A few days ago, a mother of a 22 year old son, shot her son and then herself.
The son had profound autism.
The son aged out of therapeutic programs & had been home with the mom for 6 months. Aside from the father who worked full time, long hours, there was no support for the mother and son.
& the mom flipped her wig and shot her son and then killed herself.
& now family and friends and acquaintances are all full of wonder "we would have helped".
The question is "why didn't you help?".
I understand why family & friends do not help. Families with autism are mostly a black hole of need. Need of respit, naps, money, energy, concern & on & on & on.
& everyone has their own kids & work & shit....
& on the rare occasion we see family, the situation, event , occasion is riddled with stress.
Many of our family members are not able to see Joe's strengths & capabalities & charms.
Done.
& I am lucky.
& Joe is lucky.
& until you have a child with autism, you cannot imagine the effort it takes to get through 1 day.
My darling friend L (18yrs) used a DymaWrite (Voice Box) when she attended a general ed classroom with CPS. L entrusted me with her Voice Box to donate to a child @ Joe's School.
When my Joe saw the Voice Box, Joe literally yelped with delight and shouted "Now xxxxx can have a voice!".
This morning Joe packed up the voice box and was so thrilled to carry the voice box to the bus & on to school.
& Miss R. sent me an email telling me the 1st thing Joe did this morning was to put the voice box on Logan's desk.
Joe's level is empathy & compassion is indeed exquisite.
Joe has top notch play skills, verbal language, age appropriate academics & clever & savvy and remarkably able to take care of day to events, ADL's (activities for daily living) etc....
& in order for my Joe to succeed, everything must be in order & as expected every single second of every single day.
Meals the exact same
Clothes
Schedule
This past week end we had another playdate with Joe's classmates & it was wonderful!
Community. We have created a community.
Monday, March 12, 2012
Sunday, March 4, 2012
Saturday, March 3, 2012
Better Day
All ready & dressed for our play date with Mario.
& this is amazing & wonderful.
& I love you so much Joe Myers
& I am so glad you are mine
& I have to stay out of the boxes & by "the boxes" I mean the boxes that are tightly packed with Bill's momentos and our rememberances of our life in NYC.
& I promise to look forward.
& this is amazing & wonderful.
& I love you so much Joe Myers
& I am so glad you are mine
& I have to stay out of the boxes & by "the boxes" I mean the boxes that are tightly packed with Bill's momentos and our rememberances of our life in NYC.
& I promise to look forward.
Friday, March 2, 2012
Blue By You
Honestly I have had my fill of autism & special needs & neurologists & explaining & chronic worrying & fear & being broke & tired & imaging a hair cut & properly fitting pants.
& I am only 9.5 years into a lifetime with my child.
& I feel sorry for myself & Joe.
Joe has me. No dad.
& I have Joe.
& together Joe & I are a hot mess.
& it's 959a in the morning & I can't stop crying.
&I am worried I am ill and then what?
& my mom says I should pray.
& I know I am lucky
& I dearly love my child
& I need 24 full hours of quiet & peace & sleep & a long shower & a clean house & a day @ a dentist @ a day @ a doctor's office.
& I miss Bill Myers.
& I miss Bill loving me
& I miss Bill aggravating me
& I miss late nights & long talks & someone else who loves my son. Someone else who would understand and incisively give a shit that Joe & I spent 5 hours with a neurologist discussing MS & 20 other horrible possibilities as to why my Joe looses control of muscles on his left side...
& I want to go to St Michael's Maryland & stay in the same house where Joe & Bill & I spent August 2004. & it was great. The house was was on Chesapeake Bay & every day was something great. & Joe was great & happy & autism was no where on our radar & never mentioned & never dreamed & every night when Joe went to sleep, Bill & I sat on a front porch drinking port & talking & imaging everything great.& in the day we would walk through the harbor and look @ boats & have lunch & play in parks & every afternoon we would take long naps & I had no idea how fucking lucky I was....
A few weeks before the August 2004 trip to St Michael's, Bill had started talking about getting sober. This is the one period in 21 years that Bill seriously talked about getting sober. Talked about what his day would be like without alcohol. Talked about changing & looking froward to not being dependant on alcohol.
& so we agreed. After Joe's 1st birthday party on 9.14.03, Bill would stop drinking. Bill would go to AA meetings & if needed go to rehab @ Gracie Square Hospital or Smithers Clinic. Bill made a plan. I believe there was even a chart! A flow chart, an excel sheet, so much planning & so much wasted effort.
& Bill did not stop drinking & Bill did not drink less & in fact Bill drank more & more.
& it should have been different but it was not different..
I want to go on a trip. I want to pack up my little car and put Joe in the back seat & drive away.
I was lucky.
& Aside from the loss of muscle control on Joe's left side, Joe has been a (mostly) perfect citizen. So clever & smart & sweet & such a beautiful child.
& Joe is so much calmer & happier than he was 6 months ago & we are able to go places & have play dates & school is perfect & still I am in a big fat slump of self pity.
& Joe is @ school & I miss him.
& I miss you Bill Myers.
& I have Joe & I am lucky.
On Tuesday Joe came home form school & asked for the phone.
Joe dialed a number and asked for "Mario".
Joe did not speak with Mario - as a voice mail answered the call.
I asked Joe how he knew Mario's phone number
"I read it from Mario's coat."
Mario is Joe's best friend @ school.
Mario & Joe have agreed to meet for lunch @ 1p on 3.3.12 @ the McDonald's on Ashland.
Luckily the mom's agreed.
& I am only 9.5 years into a lifetime with my child.
& I feel sorry for myself & Joe.
Joe has me. No dad.
& I have Joe.
& together Joe & I are a hot mess.
& it's 959a in the morning & I can't stop crying.
&I am worried I am ill and then what?
& my mom says I should pray.
& I know I am lucky
& I dearly love my child
& I need 24 full hours of quiet & peace & sleep & a long shower & a clean house & a day @ a dentist @ a day @ a doctor's office.
& I miss Bill Myers.
& I miss Bill loving me
& I miss Bill aggravating me
& I miss late nights & long talks & someone else who loves my son. Someone else who would understand and incisively give a shit that Joe & I spent 5 hours with a neurologist discussing MS & 20 other horrible possibilities as to why my Joe looses control of muscles on his left side...
& I want to go to St Michael's Maryland & stay in the same house where Joe & Bill & I spent August 2004. & it was great. The house was was on Chesapeake Bay & every day was something great. & Joe was great & happy & autism was no where on our radar & never mentioned & never dreamed & every night when Joe went to sleep, Bill & I sat on a front porch drinking port & talking & imaging everything great.& in the day we would walk through the harbor and look @ boats & have lunch & play in parks & every afternoon we would take long naps & I had no idea how fucking lucky I was....
A few weeks before the August 2004 trip to St Michael's, Bill had started talking about getting sober. This is the one period in 21 years that Bill seriously talked about getting sober. Talked about what his day would be like without alcohol. Talked about changing & looking froward to not being dependant on alcohol.
& so we agreed. After Joe's 1st birthday party on 9.14.03, Bill would stop drinking. Bill would go to AA meetings & if needed go to rehab @ Gracie Square Hospital or Smithers Clinic. Bill made a plan. I believe there was even a chart! A flow chart, an excel sheet, so much planning & so much wasted effort.
& Bill did not stop drinking & Bill did not drink less & in fact Bill drank more & more.
& it should have been different but it was not different..
I want to go on a trip. I want to pack up my little car and put Joe in the back seat & drive away.
I was lucky.
& Aside from the loss of muscle control on Joe's left side, Joe has been a (mostly) perfect citizen. So clever & smart & sweet & such a beautiful child.
& Joe is so much calmer & happier than he was 6 months ago & we are able to go places & have play dates & school is perfect & still I am in a big fat slump of self pity.
& Joe is @ school & I miss him.
& I miss you Bill Myers.
& I have Joe & I am lucky.
On Tuesday Joe came home form school & asked for the phone.
Joe dialed a number and asked for "Mario".
Joe did not speak with Mario - as a voice mail answered the call.
I asked Joe how he knew Mario's phone number
"I read it from Mario's coat."
Mario is Joe's best friend @ school.
Mario & Joe have agreed to meet for lunch @ 1p on 3.3.12 @ the McDonald's on Ashland.
Luckily the mom's agreed.
Tuesday, February 28, 2012
Love
Dear Joe,
Now you are asleep and you have had a great day.
Now I am awake & am waitting for a Pediatric Neurologist to call me.
You are having trouble walking. You are limping & or dragging your left foot. You say you feel "great".
This is a mystery. When you were 3 years old you had the same problem. & You & I went to NYU Hospital & stayed for a week. Your dad kept us company and brought us take out and loved us. You had so many tests & more tests & more tests and after a few days the doctors told your dad "sometimes we just don't know". & by the time the NYU doctors told us to go home, you were walking and toddeling around and happy and perfect.
& we took a taxi back to Brooklyn & we watched fireworks from our back deck & your were great.
& tomorrow we will go to Children's Hospital & see...
Together we will see.
xoxox
Come with us Bill. We need you.
Now you are asleep and you have had a great day.
Now I am awake & am waitting for a Pediatric Neurologist to call me.
You are having trouble walking. You are limping & or dragging your left foot. You say you feel "great".
This is a mystery. When you were 3 years old you had the same problem. & You & I went to NYU Hospital & stayed for a week. Your dad kept us company and brought us take out and loved us. You had so many tests & more tests & more tests and after a few days the doctors told your dad "sometimes we just don't know". & by the time the NYU doctors told us to go home, you were walking and toddeling around and happy and perfect.
& we took a taxi back to Brooklyn & we watched fireworks from our back deck & your were great.
& tomorrow we will go to Children's Hospital & see...
Together we will see.
xoxox
Come with us Bill. We need you.
Monday, February 27, 2012
WTF Chicago?
Saturday afternoon Joe & I went with our friends Spencer & Sandy to a Sock Hop.
The Sock hop was hosted by a local autism agency.
Joe had a blast.
Joe was dancing & laughing & happy.
1st - Kudos to the organization for getting so many families out of their houses, into the community & dancing & sharing & talking & laughing.
2nd - What the fuck Chicago?
There were approximately 100 people in the gymnasium @ the Sock Hop. Maybe 55 kids raging in age from 8 to 25. Almost all were black and all currently in or graduates of the Chicago Public School System. & it was dismal. Few of the kids were verbal. Many were in constant motion. Most kids appeared disconnected.
It was a Sock hop for kids with autism. What was I expecting?
I was expecting more.
The city of Chicago & the state if Illinois is failing it's children with autism / special needs.
If a child does not have an instinct or natural curiosity for play, socialization, peer interaction etc...the child must be taught to play, be curious & social and a part of a group & community. I know a family of typical children will think this crazy. It is not crazy. It is a requirement. It is necessary.
NY state did a great job for my Joe. @ 19 months Joe was center based at The Therapy & Learning Center in Brooklyn New York. Joe was in a excellent Early Intervention program that taught my child how to play and be curios and communicate etc...Yes it was a slow & daunting & arduous & on going task. But (most) every week day, year round, my Joe went to school @ The Therapy & Learning Center from 19 months til Joe was ready for 1st grade. & in addition to the excellent teachers and therapists and resources @ TLC, Joe also had home based services. The majority paid in full by the Dept of Mental Health in NY State. I am horrified to hear center based early intervention programs are rare in the sate of Illinois. A child with PDD/NOS. Autism etc...needs a community & a school & a classroom & therapy & services.
& Joe is 9.
& Joe is talking & learning & laughing & occasionally tantruming & making friends & having melt downs.
& Joe has emotional & social delays
& I thank my lucky stars Joe was born in Brooklyn New York.
Joe is (most likely) not more intelligent than the other children @ the sock hop.
Joe is not better than the other children @ the sock hop.
Joe is luckier than other children @ the Sock Hop.
Joe received more than 40 hours a week combined center based & @ home services for the most important part of his development. From 19 months until 5 years old Joe had the best of the best of Early Intervention & I thank NY State.
& I thank my lucky stars Joe landed @ Agassiz School in Chicago. And aside form Agassiz, where else? What are the options for children with mild to moderate autism PDD/NOS? I have no idea.
Chicago needs to step up and meet the needs of children that are A-Typical learners. Meet the needs of children that need speech and occupational therapy on a daily basis. Meet the needs of children that need social skills and hand over hand support in order to navigate a school day.
Our children will not get "better" without the support of services.
& without services for our children, our children will grown up to be in constant need of help and aide. & then what Chicago?
Today I heard a parent say "We are going away for a few days. What's the point of sending ..... to school anyway?"
How do we make our schools better?
If we do not find a way to provide services & education for our children, we are 1 fucked up town.
The Sock hop was hosted by a local autism agency.
Joe had a blast.
Joe was dancing & laughing & happy.
1st - Kudos to the organization for getting so many families out of their houses, into the community & dancing & sharing & talking & laughing.
2nd - What the fuck Chicago?
There were approximately 100 people in the gymnasium @ the Sock Hop. Maybe 55 kids raging in age from 8 to 25. Almost all were black and all currently in or graduates of the Chicago Public School System. & it was dismal. Few of the kids were verbal. Many were in constant motion. Most kids appeared disconnected.
It was a Sock hop for kids with autism. What was I expecting?
I was expecting more.
The city of Chicago & the state if Illinois is failing it's children with autism / special needs.
If a child does not have an instinct or natural curiosity for play, socialization, peer interaction etc...the child must be taught to play, be curious & social and a part of a group & community. I know a family of typical children will think this crazy. It is not crazy. It is a requirement. It is necessary.
NY state did a great job for my Joe. @ 19 months Joe was center based at The Therapy & Learning Center in Brooklyn New York. Joe was in a excellent Early Intervention program that taught my child how to play and be curios and communicate etc...Yes it was a slow & daunting & arduous & on going task. But (most) every week day, year round, my Joe went to school @ The Therapy & Learning Center from 19 months til Joe was ready for 1st grade. & in addition to the excellent teachers and therapists and resources @ TLC, Joe also had home based services. The majority paid in full by the Dept of Mental Health in NY State. I am horrified to hear center based early intervention programs are rare in the sate of Illinois. A child with PDD/NOS. Autism etc...needs a community & a school & a classroom & therapy & services.
& Joe is 9.
& Joe is talking & learning & laughing & occasionally tantruming & making friends & having melt downs.
& Joe has emotional & social delays
& I thank my lucky stars Joe was born in Brooklyn New York.
Joe is (most likely) not more intelligent than the other children @ the sock hop.
Joe is not better than the other children @ the sock hop.
Joe is luckier than other children @ the Sock Hop.
Joe received more than 40 hours a week combined center based & @ home services for the most important part of his development. From 19 months until 5 years old Joe had the best of the best of Early Intervention & I thank NY State.
& I thank my lucky stars Joe landed @ Agassiz School in Chicago. And aside form Agassiz, where else? What are the options for children with mild to moderate autism PDD/NOS? I have no idea.
Chicago needs to step up and meet the needs of children that are A-Typical learners. Meet the needs of children that need speech and occupational therapy on a daily basis. Meet the needs of children that need social skills and hand over hand support in order to navigate a school day.
Our children will not get "better" without the support of services.
& without services for our children, our children will grown up to be in constant need of help and aide. & then what Chicago?
Today I heard a parent say "We are going away for a few days. What's the point of sending ..... to school anyway?"
How do we make our schools better?
If we do not find a way to provide services & education for our children, we are 1 fucked up town.
Thursday, February 23, 2012
It's Really Us!
LegoLand @ The Discovery Center
2 parties
1/2 dozen adventure walks
7 play dates
Best & most encouraging IEP to date
Daily kudo's form school
1 mild tantrum
Getting dressed completly on own.
Within the past 4 weeks, Joe has had a emo
WOW! We have been doing great.
A few days ago, Joe started to limp. Within a few hours, the limp became severe and Joe was dragging his leg and then Joe did not want to walk or run or play,
Joe had no pain. I was able to touch, rub, move, easily manipulate all parts of Joe's leg and hip.
This has happened 3 times.
Each time we go to the Neurologist and then to a hospital for tests. Each time Joe regains his ordinary gait & each time there is no explanation.
& still we are all good.
& we are counting down the days til The Lorax opens on 3.1.12
& tomorrow Joe has a babysitter and I have an evening with a friend.
& we are happy & grateful
2 parties
1/2 dozen adventure walks
7 play dates
Best & most encouraging IEP to date
Daily kudo's form school
1 mild tantrum
Getting dressed completly on own.
Within the past 4 weeks, Joe has had a emo
WOW! We have been doing great.
A few days ago, Joe started to limp. Within a few hours, the limp became severe and Joe was dragging his leg and then Joe did not want to walk or run or play,
Joe had no pain. I was able to touch, rub, move, easily manipulate all parts of Joe's leg and hip.
This has happened 3 times.
Each time we go to the Neurologist and then to a hospital for tests. Each time Joe regains his ordinary gait & each time there is no explanation.
& still we are all good.
& we are counting down the days til The Lorax opens on 3.1.12
& tomorrow Joe has a babysitter and I have an evening with a friend.
& we are happy & grateful
Monday, February 6, 2012
This Will Hurt
The thought of going to the dentist makes me ill. Literally ill. I hate the dentist. & I only go to the dentist in case of an emergency.
July 2010 I had a dental emergency. I had a tooth ache for months and knew I had to see a dentist. I went to see a dentist and was told my tooth was beyond a root canal and should be pulled. The rear tooth was pulled and I had months of dry socket and opening the wound and packing the wound and stitches in and stitches out and by September my mouth was better.
& I was hounded by the dentist to return as soon as possible to start root canals on 3 other teeth.
Fat Chance!
I brush my teeth twice a day.
I floss.
I purchase a new tooth brush every few weeks.
I use mouthwash.
& my teeth are an overly sensitive mess.
& today was another dental emergency. I have had a tooth ache for 6 weeks and called a dentist, made an appointment, took a Valium and went to the dentist.
Dentist says 4 root canals, possible extraction, infection and bone disease.
My jaw bone is weak and my teeth are moving and infected and now what?
Yes - I took my prescription to Walgreen's & will pick up tomorrow when I get Joe's Bi weekly medications.
Am I going to go back for 4 root canals & a possible extraction?
60/40.
& the dentist took most of my day.
& Joe was happy to be home from school and we played with the Sonic characters and built space autobot's with Lego's and a storage facility for the Wisps out of Lincoln Log's.
& my mouth hurts.
Joe was off school this past Friday & we went to see my mother in Michigan.
After a day in Michigan we came back to Chicago & took a side trip through China Town.
Joe was fully charmed by China Town. "Oh Kate Myers, I love Chinese people". "Chinese people sing when they talk".
& someone I love & someone I trust said with equal amounts of pity and annoyance "Get some control over your kid".
July 2010 I had a dental emergency. I had a tooth ache for months and knew I had to see a dentist. I went to see a dentist and was told my tooth was beyond a root canal and should be pulled. The rear tooth was pulled and I had months of dry socket and opening the wound and packing the wound and stitches in and stitches out and by September my mouth was better.
& I was hounded by the dentist to return as soon as possible to start root canals on 3 other teeth.
Fat Chance!
I brush my teeth twice a day.
I floss.
I purchase a new tooth brush every few weeks.
I use mouthwash.
& my teeth are an overly sensitive mess.
& today was another dental emergency. I have had a tooth ache for 6 weeks and called a dentist, made an appointment, took a Valium and went to the dentist.
Dentist says 4 root canals, possible extraction, infection and bone disease.
My jaw bone is weak and my teeth are moving and infected and now what?
Yes - I took my prescription to Walgreen's & will pick up tomorrow when I get Joe's Bi weekly medications.
Am I going to go back for 4 root canals & a possible extraction?
60/40.
& the dentist took most of my day.
& Joe was happy to be home from school and we played with the Sonic characters and built space autobot's with Lego's and a storage facility for the Wisps out of Lincoln Log's.
& my mouth hurts.
Joe was off school this past Friday & we went to see my mother in Michigan.
After a day in Michigan we came back to Chicago & took a side trip through China Town.
Joe was fully charmed by China Town. "Oh Kate Myers, I love Chinese people". "Chinese people sing when they talk".
& someone I love & someone I trust said with equal amounts of pity and annoyance "Get some control over your kid".
Thursday, February 2, 2012
Help IS NOT on the Way
"Our lives begin to end the day we become silent about things that matter.”
– Martin Luther King,
I am outraged by the death of a 15year old child with autism, @ the hands of the Calumet City Police Dept.
A 15 year old child with autism was shot 1st shot in the torso and again in the head by officers within the Calumet City Police Dept.
Stephon Watts had autism. The Calumet Police Dept says they were aware of Stephon's neurological disorder before they arrived @ the Watts home. Stephon's family repeatedly reminded the 5 officers that came to their home that Stephon had autism.
Stephon Watts had autism.
People with autism have aggressive and violent tantrums. . The aggressive and violent tantrums are not because of bad parenting, a neglectful household or a rotten child. The aggressive and violent tantrums are due to autism.
My 9 year old son has autism and aggressive & violent tantrums. It is heartbreaking and fierce and I am often left with scratches that bleed for hours and arms that look like raw meat. This is part of autism.
2 years ago on a sunny, spring morning here in Chicago, in our cheap & cheerful rental, my child had a very bad tantrum. Not even our worse morning or tantrum. Apparently a neighbor called the police. As the tantrum was winding down (My son did not want to turn off his lap top and go to school - same circumstances as Stephon Watts) the door bell rang & it was the Chicago Police Dept.
The policeman asked if I was the only adult in the house & I said yes, as I stood there with arms bleeding form scratched and hands swollen from pinching. I explained my son had autism. the officers were dumb founded & asked if I needed help "Hell yes! I need help!" & the police left, no report was filed and I have never heard back from anyone regarding my affirmation that Yes, I needed help.
I am disgusted that a family had no other option than to call the police to help calm their 15 year old son who has a Neurological Disorder.
Stephon Watts & his family were in crisis. Stephon Watts & his family needed help.
Help.
Do we help members of our community in crisis?
Seems we do not.
– Martin Luther King,
I am outraged by the death of a 15year old child with autism, @ the hands of the Calumet City Police Dept.
A 15 year old child with autism was shot 1st shot in the torso and again in the head by officers within the Calumet City Police Dept.
Stephon Watts had autism. The Calumet Police Dept says they were aware of Stephon's neurological disorder before they arrived @ the Watts home. Stephon's family repeatedly reminded the 5 officers that came to their home that Stephon had autism.
Stephon Watts had autism.
People with autism have aggressive and violent tantrums. . The aggressive and violent tantrums are not because of bad parenting, a neglectful household or a rotten child. The aggressive and violent tantrums are due to autism.
My 9 year old son has autism and aggressive & violent tantrums. It is heartbreaking and fierce and I am often left with scratches that bleed for hours and arms that look like raw meat. This is part of autism.
2 years ago on a sunny, spring morning here in Chicago, in our cheap & cheerful rental, my child had a very bad tantrum. Not even our worse morning or tantrum. Apparently a neighbor called the police. As the tantrum was winding down (My son did not want to turn off his lap top and go to school - same circumstances as Stephon Watts) the door bell rang & it was the Chicago Police Dept.
The policeman asked if I was the only adult in the house & I said yes, as I stood there with arms bleeding form scratched and hands swollen from pinching. I explained my son had autism. the officers were dumb founded & asked if I needed help "Hell yes! I need help!" & the police left, no report was filed and I have never heard back from anyone regarding my affirmation that Yes, I needed help.
I am disgusted that a family had no other option than to call the police to help calm their 15 year old son who has a Neurological Disorder.
Stephon Watts & his family were in crisis. Stephon Watts & his family needed help.
Help.
Do we help members of our community in crisis?
Seems we do not.
Help IS NOT on the Way
"Our lives begin to end the day we become silent about things that matter.”
– Martin Luther King,
I am outraged by the death of a 15year old child with autism, @ the hands of the Calumet City Police Dept.
A 15 year old child with autism was shot 1st shot in the torso and again in the head by officers within the Calumet City Police Dept.
Stephon Watts had autism. The Calumet Police Dept says they were aware of Stephon's neurological disorder before they arrived @ the Watts home. Stephon's family repeatedly reminded the 5 officers that came to their home that Stephon had autism.
Stephon Watts had autism.
People with autism have aggressive and violent tantrums. . The aggressive and violent tantrums are not because of bad parenting, a neglectful household or a rotten child. The aggressive and violent tantrums are due to autism.
My 9 year old son has autism and aggressive & violent tantrums. It is heartbreaking and fierce and I am often left with scratches that bleed for hours and arms that look like raw meat. This is part of autism.
2 years ago on a sunny, spring morning here in Chicago, in our cheap & cheerful rental, my child had a very bad tantrum. Not even our worse morning or tantrum. Apparently a neighbor called the police. As the tantrum was winding down (My son did not want to turn off his lap top and go to school - same circumstances as Stephon Watts) the door bell rang & it was the Chicago Police Dept.
The policeman asked if I was the only adult in the house & I said yes, as I stood there with arms bleeding form scratched and hands swollen from pinching. I explained my son had autism. the officers were dumb founded & asked if I needed help "Hell yes! I need help!" & the police left, no report was filed and I have never heard back from anyone regarding my affirmation that Yes, I needed help.
I am disgusted that a family had no other option than to call the police to help calm their 15 year old son who has a Neurological Disorder.
Stephon Watts & his family were in crisis. Stephon Watts & his family needed help.
Help.
Do we help members of our community in crisis?
Seems we do not.
– Martin Luther King,
I am outraged by the death of a 15year old child with autism, @ the hands of the Calumet City Police Dept.
A 15 year old child with autism was shot 1st shot in the torso and again in the head by officers within the Calumet City Police Dept.
Stephon Watts had autism. The Calumet Police Dept says they were aware of Stephon's neurological disorder before they arrived @ the Watts home. Stephon's family repeatedly reminded the 5 officers that came to their home that Stephon had autism.
Stephon Watts had autism.
People with autism have aggressive and violent tantrums. . The aggressive and violent tantrums are not because of bad parenting, a neglectful household or a rotten child. The aggressive and violent tantrums are due to autism.
My 9 year old son has autism and aggressive & violent tantrums. It is heartbreaking and fierce and I am often left with scratches that bleed for hours and arms that look like raw meat. This is part of autism.
2 years ago on a sunny, spring morning here in Chicago, in our cheap & cheerful rental, my child had a very bad tantrum. Not even our worse morning or tantrum. Apparently a neighbor called the police. As the tantrum was winding down (My son did not want to turn off his lap top and go to school - same circumstances as Stephon Watts) the door bell rang & it was the Chicago Police Dept.
The policeman asked if I was the only adult in the house & I said yes, as I stood there with arms bleeding form scratched and hands swollen from pinching. I explained my son had autism. the officers were dumb founded & asked if I needed help "Hell yes! I need help!" & the police left, no report was filed and I have never heard back from anyone regarding my affirmation that Yes, I needed help.
I am disgusted that a family had no other option than to call the police to help calm their 15 year old son who has a Neurological Disorder.
Stephon Watts & his family were in crisis. Stephon Watts & his family needed help.
Help.
Do we help members of our community in crisis?
Seems we do not.
Wednesday, February 1, 2012
GOD HELP US
A 15-year-old boy who suffered from an autism disorder was shot and killed by police in his Calumet City home after he threatened officers and cut one of them with a knife, police and the boy's family said.
The family called police this morning after Stephon Watts, who suffered from Asperger's syndrome, became upset and did not want to go to school, said his mother Danelene Powell-Watts. Asperger's is an autism-type disorder in which a person often has normal or high intelligence, but struggles with social skills and repetitive behavior.
Police were called about 8:30 a.m. to the home in the 500 block of Forsythe Avenue, an address that was familiar with police, said Calumet City Police Chief Edward Gilmore. "This is an address that's flagged in our system as having a autistic young man there who is very strong and likes to fight with the police."
Five officers were consequently sent to the home, Gilmore told a news conference. When they arrived, the boy was in the basement, holding a kitchen knife, Gilmore said. Two of the officers went to the basement and the boy "lashed out" with the knife and struck one of them in the forearm, Gilmore said.
"At that time, cornered and having no way to retreat back up the stairs, the officers fired one shot each, striking the (boy) twice," Gilmore said. "Unfortunately, the officer thought that his life was in jeopardy."
Gilmore was uncertain of where Watts was hit, but his mother said the boy -- who stood at 5-foot-10 and weighed 220 pounds -- was shot in the head.
The officer who was cut was treated on the scene by paramedics, Gilmore said.
Police have been to the home 12 times since June 2010, 10 times to deal just with this boy and domestic issues involving him, Gilmore said.
The 15-year-old had wielded knives before, including barricading himself in a bathroom with a knife, prompting police to call out a negotiator, Gilmore said.
On Dec. 10, Stephon's birthday, police were called after he punched his mother in the face, Gilmore said. The boy fled his home with a knife and officers gave chase, eventually hitting him twice with Tasers.
Both officers in today's shooting are on paid administrative leave until the completion of an investigation by Illinois State Police.
All Calumet City police officers last year attended a class dealing with people with autism disorders, and all 84 have been trained to deal with them, according to Gilmore.
Stephon's family arrived at Calumet City Police headquarters before Gilmore's news conference and said they were shocked that officers had to resort to shooting the boy.
"If the policemen had never been out to the house, I can understand that because they don't know the situation," said Wayne Watts, the boy's uncle. "It seems to me they would have known how to deal with the child because they knew him. To shoot the child, to shoot him. It's just too much. He's gone ... They knew he was sick."
Powell-Watts said she had trusted that police would not hurt her son, especially because "they know he is sick and they are trained to deal with someone that is sick.
"The way they did it, they didn't have to shoot him," Powell-Watts said.
bschlikerman@tribune.com
The family called police this morning after Stephon Watts, who suffered from Asperger's syndrome, became upset and did not want to go to school, said his mother Danelene Powell-Watts. Asperger's is an autism-type disorder in which a person often has normal or high intelligence, but struggles with social skills and repetitive behavior.
Police were called about 8:30 a.m. to the home in the 500 block of Forsythe Avenue, an address that was familiar with police, said Calumet City Police Chief Edward Gilmore. "This is an address that's flagged in our system as having a autistic young man there who is very strong and likes to fight with the police."
Five officers were consequently sent to the home, Gilmore told a news conference. When they arrived, the boy was in the basement, holding a kitchen knife, Gilmore said. Two of the officers went to the basement and the boy "lashed out" with the knife and struck one of them in the forearm, Gilmore said.
"At that time, cornered and having no way to retreat back up the stairs, the officers fired one shot each, striking the (boy) twice," Gilmore said. "Unfortunately, the officer thought that his life was in jeopardy."
Gilmore was uncertain of where Watts was hit, but his mother said the boy -- who stood at 5-foot-10 and weighed 220 pounds -- was shot in the head.
The officer who was cut was treated on the scene by paramedics, Gilmore said.
Police have been to the home 12 times since June 2010, 10 times to deal just with this boy and domestic issues involving him, Gilmore said.
The 15-year-old had wielded knives before, including barricading himself in a bathroom with a knife, prompting police to call out a negotiator, Gilmore said.
On Dec. 10, Stephon's birthday, police were called after he punched his mother in the face, Gilmore said. The boy fled his home with a knife and officers gave chase, eventually hitting him twice with Tasers.
Both officers in today's shooting are on paid administrative leave until the completion of an investigation by Illinois State Police.
All Calumet City police officers last year attended a class dealing with people with autism disorders, and all 84 have been trained to deal with them, according to Gilmore.
Stephon's family arrived at Calumet City Police headquarters before Gilmore's news conference and said they were shocked that officers had to resort to shooting the boy.
"If the policemen had never been out to the house, I can understand that because they don't know the situation," said Wayne Watts, the boy's uncle. "It seems to me they would have known how to deal with the child because they knew him. To shoot the child, to shoot him. It's just too much. He's gone ... They knew he was sick."
Powell-Watts said she had trusted that police would not hurt her son, especially because "they know he is sick and they are trained to deal with someone that is sick.
"The way they did it, they didn't have to shoot him," Powell-Watts said.
bschlikerman@tribune.com
Sunday, January 29, 2012
SHHHHHHHHHHHHHHH..................
This afternoon Joe & I went to my brother B's for our "every other week, meet & greet" and it was swell.
Fun.
B was welcoming and (almost!) comfortable with Joe & I in his apt. and Joe was appropriately curious and answered B's questions.
I am grateful to B for his time and willingness & effort.
The Meet & Greet made for a nice day.
Joe continues to be enthralled with Kreon's & Kre O Transformers & Lego's.
Noise.
Today there is a lot of noise. & I add to / create the noise.
Reminder: Be Quiet Kate
Fun.
B was welcoming and (almost!) comfortable with Joe & I in his apt. and Joe was appropriately curious and answered B's questions.
I am grateful to B for his time and willingness & effort.
The Meet & Greet made for a nice day.
Joe continues to be enthralled with Kreon's & Kre O Transformers & Lego's.
Noise.
Today there is a lot of noise. & I add to / create the noise.
Reminder: Be Quiet Kate
Ghost
I woke up in the middle of the night and there was a gray haired woman, very pale, almost transparent wearing a white shawl sitting on my bed & rubbing Joe's back & talking with Joe.
I was not scared but closed my eyes.
& then I heard Joe laugh & say "no more tickling".
Grief twists your ideas & perceptions & images & thoughts.
I of course believe I saw my aunt Jill comforting my son or I had a dream of my aunt Jill comforting my son.
Yesterday Joe & I drove aunt Ellie to work, went to the post office, stopped for doughnuts! & cleaned up our apartment in preparation for our play date.
& our play date was great. Joe's school friend N. came over with his dad and sister L. All adorable & fun & pleasant & accepting of our circumstances & behaviors. & now we look forward to twice weekly visits with N.
& last night Joe declared "Movie Night". Joe made a sign "Movie Night 7p / 6p Central". While I made popcorn, Joe put pillows & blankets on the floor and set the DVR to Toy Story 3 & we had movie night & we had fun @ the end of a already great day.
& today Joe & I are going to Uncle Bobby's @ 1230n. My brother & I & Joe are working on building a relationship / bond between Joe & Uncle bobby. Every other Sunday. 30 minutes - 1 hour. 1 on 1 between Uncle Bobby & Joe.
& tomorrow Joe is back to school.
Oh, & me?
I was not scared but closed my eyes.
& then I heard Joe laugh & say "no more tickling".
Grief twists your ideas & perceptions & images & thoughts.
I of course believe I saw my aunt Jill comforting my son or I had a dream of my aunt Jill comforting my son.
Yesterday Joe & I drove aunt Ellie to work, went to the post office, stopped for doughnuts! & cleaned up our apartment in preparation for our play date.
& our play date was great. Joe's school friend N. came over with his dad and sister L. All adorable & fun & pleasant & accepting of our circumstances & behaviors. & now we look forward to twice weekly visits with N.
& last night Joe declared "Movie Night". Joe made a sign "Movie Night 7p / 6p Central". While I made popcorn, Joe put pillows & blankets on the floor and set the DVR to Toy Story 3 & we had movie night & we had fun @ the end of a already great day.
& today Joe & I are going to Uncle Bobby's @ 1230n. My brother & I & Joe are working on building a relationship / bond between Joe & Uncle bobby. Every other Sunday. 30 minutes - 1 hour. 1 on 1 between Uncle Bobby & Joe.
& tomorrow Joe is back to school.
Oh, & me?
Tuesday, January 24, 2012
More of the Same
& now I am thinking of the last sentence of my last post:
"I am being held hostage by autism".
OK -
I am being held hostage by my fear and anxiety regarding my child's autism. & more specifically. I am being held hostage by my fear and anxiety regarding my child's behaviors and mannerism caused by autism.
I am tired of defense. I am tired of explaining. & I wonder why the hell do I bother?
Today in Walgreen's, Joe & I were picking up a prescription. Joe was squawking. Not like a chicken - which would be clucking, but squawking. Sort of like a seal or a wild bird of some sort. Joe was also waiting patiently and was not harming anyone or himself. So squawks be dammed. We were getting our prescriptions.
& of course some jack ass said "how old is he?" "Oh, 9? Really?" "What's wrong with him?"
& this happens 50% of the time when Joe & I leave our apartment.
Ignore it? I do not ignore any comment regarding my child.
Take time to educate the person? Fuck them.
So I am defensive & angry & mean.
"Someday a child you love will have a very bad day and some ass hole like you will make your day worse"
"Is that your child? What is it like to have a totally average kids?"
"We live in this neighborhood, we spend our money here, we are members of the community so get the hell out of my way"
"Maybe 1 day you will get laid, have a child & your child will have a great deal of difficult managing a trip to Walgreen's. Or maybe you will never get laid".
"It's autism. It's contagious. Get away from us".
"I believe there is room for everyonne in this world. Everyone but ass holes".
& After Walgreen's we went to Whole Food's and on and on and on it goes.
& Joe does not have full blown autism. Joe has PDD/NOS. Prevasive Developmenatl Disorder Not Otherwise Specified.
PDD-NOS is typically diagnosed by child psychiatrists, psychologists, or pediatric neurologists.[2] No singular specific test can be administered to determine whether a child is on the spectrum. Diagnosis is made through observations, questionnaires, and tests. A parent will usually initiate the quest into the diagnosis with questions for their child's pediatrician about their child's development after noticing abnormalities. From there, doctors will ask questions to gauge the child’s development in comparison to age-appropriate milestones. One test that measures this is the Modified Checklist of Autism in Toddlers (MCHAT). This is a list of questions whose answers will determine whether or not the child should be referred to a specialist such as a Developmental pediatrician, a neurologist, a psychiatrist, or a psychologist. Another checklist, the DSM-IV is a series of characteristics and criteria to qualify for an autism diagnosis.[3]
[edit] Characteristics
Because PDD-NOS is a spectrum disorder, not every child shows the same signs. The two main characteristics of the disorder are difficulties with social interaction skills and communication.[4] Signs are often visible in babies but a diagnosis is usually not made until around age 4.[5] Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.[5]
[edit] Social functioning skills
Once a child with PDD-NOS enters school, he or she will often be very eager to interact with classmates, but may act socially different to peers and be unable to make genuine connections. As they age, the closest connections they make are typically with their parents. Children with PDD-NOS have difficulty reading facial expressions and relating to feelings of others. They may not know how to respond when someone is laughing or crying. Literal thinking is also characteristic of PDD-NOS. They will most likely have difficulty understanding figurative speech and sarcasm.[1]
[edit] Communication skills
Inhibited communication skills are a sign of PDD-NOS that begins immediately after birth. Infants with PDD-NOS do not babble; as they age, they do not speak at the age at which speech develops in typical persons. Once verbal communication begins, vocabulary is often limited.[2] Some characteristics of language-based patterns are repetitive or rigid language, narrow interests, uneven language development, and poor nonverbal communication.[6] A very common characteristic of PDD-NOS is severe difficulty grasping the difference between pronouns, particularly between you and me when conversing, as in this example:
Parent: Do you want to colour this or do you want me to?Child: Me.
Here, because the parent used the word me to describe himself or herself, the child thinks that "me" is applicable to the parent regardless of who the speaker is. The child does not understand, without intervention, that the assignment of me depends on the speaker, not to whoever spoke it first.
& So Joe & I stay home & cozy & read books & watch movies & cartoons & do homework & enagage in language that is odd to most anyone else. We walk in the snow @ 7am when every other kid is home eatting oatmeal. @ home we are safe. With the exception of school, we are @ risk most anyplace else.
Most anyplace else, takes so much energy and defense that I choose for us not to engage.
& while Joe is in school, I could be exercising @ the LakeView YMCA, walking, visiting a friend - almost anything. But I don't. I do necessary errands & stay home.
Most all of my loved one's have said one thing or another that have offended and crushed me. Laughed @ jokes about kids who ride the little bus, recoiled when Joe wants to hug, says a straightforward "NO" when Joe asks "Can I sit next to you?" and then there is someone I dearly love who does not want my child around her children. and on and on and on it goes...
& 1 by 1 friends & family fall out of our circle. Our already small circle.
I read a review in the New Yorker of the file "Extremely Loud & Incredible Close" I have previously read that Oskar, the child in the film, is a character written to have autism. The review did not mention autism but did say "Oskar was extremely annoying".
Annoying.
"I am being held hostage by autism".
OK -
I am being held hostage by my fear and anxiety regarding my child's autism. & more specifically. I am being held hostage by my fear and anxiety regarding my child's behaviors and mannerism caused by autism.
I am tired of defense. I am tired of explaining. & I wonder why the hell do I bother?
Today in Walgreen's, Joe & I were picking up a prescription. Joe was squawking. Not like a chicken - which would be clucking, but squawking. Sort of like a seal or a wild bird of some sort. Joe was also waiting patiently and was not harming anyone or himself. So squawks be dammed. We were getting our prescriptions.
& of course some jack ass said "how old is he?" "Oh, 9? Really?" "What's wrong with him?"
& this happens 50% of the time when Joe & I leave our apartment.
Ignore it? I do not ignore any comment regarding my child.
Take time to educate the person? Fuck them.
So I am defensive & angry & mean.
"Someday a child you love will have a very bad day and some ass hole like you will make your day worse"
"Is that your child? What is it like to have a totally average kids?"
"We live in this neighborhood, we spend our money here, we are members of the community so get the hell out of my way"
"Maybe 1 day you will get laid, have a child & your child will have a great deal of difficult managing a trip to Walgreen's. Or maybe you will never get laid".
"It's autism. It's contagious. Get away from us".
"I believe there is room for everyonne in this world. Everyone but ass holes".
& After Walgreen's we went to Whole Food's and on and on and on it goes.
& Joe does not have full blown autism. Joe has PDD/NOS. Prevasive Developmenatl Disorder Not Otherwise Specified.
PDD-NOS is typically diagnosed by child psychiatrists, psychologists, or pediatric neurologists.[2] No singular specific test can be administered to determine whether a child is on the spectrum. Diagnosis is made through observations, questionnaires, and tests. A parent will usually initiate the quest into the diagnosis with questions for their child's pediatrician about their child's development after noticing abnormalities. From there, doctors will ask questions to gauge the child’s development in comparison to age-appropriate milestones. One test that measures this is the Modified Checklist of Autism in Toddlers (MCHAT). This is a list of questions whose answers will determine whether or not the child should be referred to a specialist such as a Developmental pediatrician, a neurologist, a psychiatrist, or a psychologist. Another checklist, the DSM-IV is a series of characteristics and criteria to qualify for an autism diagnosis.[3]
[edit] Characteristics
Because PDD-NOS is a spectrum disorder, not every child shows the same signs. The two main characteristics of the disorder are difficulties with social interaction skills and communication.[4] Signs are often visible in babies but a diagnosis is usually not made until around age 4.[5] Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe.[5]
[edit] Social functioning skills
Once a child with PDD-NOS enters school, he or she will often be very eager to interact with classmates, but may act socially different to peers and be unable to make genuine connections. As they age, the closest connections they make are typically with their parents. Children with PDD-NOS have difficulty reading facial expressions and relating to feelings of others. They may not know how to respond when someone is laughing or crying. Literal thinking is also characteristic of PDD-NOS. They will most likely have difficulty understanding figurative speech and sarcasm.[1]
[edit] Communication skills
Inhibited communication skills are a sign of PDD-NOS that begins immediately after birth. Infants with PDD-NOS do not babble; as they age, they do not speak at the age at which speech develops in typical persons. Once verbal communication begins, vocabulary is often limited.[2] Some characteristics of language-based patterns are repetitive or rigid language, narrow interests, uneven language development, and poor nonverbal communication.[6] A very common characteristic of PDD-NOS is severe difficulty grasping the difference between pronouns, particularly between you and me when conversing, as in this example:
Parent: Do you want to colour this or do you want me to?Child: Me.
Here, because the parent used the word me to describe himself or herself, the child thinks that "me" is applicable to the parent regardless of who the speaker is. The child does not understand, without intervention, that the assignment of me depends on the speaker, not to whoever spoke it first.
& So Joe & I stay home & cozy & read books & watch movies & cartoons & do homework & enagage in language that is odd to most anyone else. We walk in the snow @ 7am when every other kid is home eatting oatmeal. @ home we are safe. With the exception of school, we are @ risk most anyplace else.
Most anyplace else, takes so much energy and defense that I choose for us not to engage.
& while Joe is in school, I could be exercising @ the LakeView YMCA, walking, visiting a friend - almost anything. But I don't. I do necessary errands & stay home.
Most all of my loved one's have said one thing or another that have offended and crushed me. Laughed @ jokes about kids who ride the little bus, recoiled when Joe wants to hug, says a straightforward "NO" when Joe asks "Can I sit next to you?" and then there is someone I dearly love who does not want my child around her children. and on and on and on it goes...
& 1 by 1 friends & family fall out of our circle. Our already small circle.
I read a review in the New Yorker of the file "Extremely Loud & Incredible Close" I have previously read that Oskar, the child in the film, is a character written to have autism. The review did not mention autism but did say "Oskar was extremely annoying".
Annoying.
What To Say? What To Do?
Setting - I am in my room, doing work and on the phone.
Joe: Kate Myers, if you don't come out of your room, I am going to flip my wig!
Me: Joe, be kind & patient. I will help you in 3 minutes. Set the timer
Joe: OK - I have to find out how to flip my wig.
& this morning was awful. Joe woke up too early & I woke up too early & everyone was crabby & KABOOM....
Joe has 2 bunnies, 8 sonic dolls & 6 angry birds & for more than 65 minutes Joe thrusted the stuffed toys into my face on by one while shouting "Kiss the bunny" "You love the bunnies" "Kiss skinny sonic" "you love skinny sonic" "Kiss tails" "You love tails" & on & on & on. & when I refused (in a loud & angry voice) Joe raged & attacked towards me. & it was not our worse rage nor was it the longest. It may have been our shortest rage.
Joe & I have been doing well & I was not expecting / anticipating a rage. & I was not prepared. I let my guard down & I was caught.
& when the rage / tantrum ended Joe wanted hugs & to see my arms & back & legs & feet. "I will fix your blood" "Where is the purple & yellow (bruises)?"
& Joe was left with a scratch on his forehead & a heart & head filled with sadness.
& I feel sick and sorry and ashamed.
& it has been three hours since Joe left for school & I still feel sick and cold and broken.
& I have no idea what to expect when I see Joe.
& I fear Joe is also worried.
My child.
& today I pick Joe up @ 1230n.
Early dismissal.
Joe was thrilled by early dismissal.
We have a doctor's appointment, prescription pick up, groceries & Joe wants to get a present for Tails the fox (Sonic's side kick).
I feel held hostage by autism.
Joe: Kate Myers, if you don't come out of your room, I am going to flip my wig!
Me: Joe, be kind & patient. I will help you in 3 minutes. Set the timer
Joe: OK - I have to find out how to flip my wig.
& this morning was awful. Joe woke up too early & I woke up too early & everyone was crabby & KABOOM....
Joe has 2 bunnies, 8 sonic dolls & 6 angry birds & for more than 65 minutes Joe thrusted the stuffed toys into my face on by one while shouting "Kiss the bunny" "You love the bunnies" "Kiss skinny sonic" "you love skinny sonic" "Kiss tails" "You love tails" & on & on & on. & when I refused (in a loud & angry voice) Joe raged & attacked towards me. & it was not our worse rage nor was it the longest. It may have been our shortest rage.
Joe & I have been doing well & I was not expecting / anticipating a rage. & I was not prepared. I let my guard down & I was caught.
& when the rage / tantrum ended Joe wanted hugs & to see my arms & back & legs & feet. "I will fix your blood" "Where is the purple & yellow (bruises)?"
& Joe was left with a scratch on his forehead & a heart & head filled with sadness.
& I feel sick and sorry and ashamed.
& it has been three hours since Joe left for school & I still feel sick and cold and broken.
& I have no idea what to expect when I see Joe.
& I fear Joe is also worried.
My child.
& today I pick Joe up @ 1230n.
Early dismissal.
Joe was thrilled by early dismissal.
We have a doctor's appointment, prescription pick up, groceries & Joe wants to get a present for Tails the fox (Sonic's side kick).
I feel held hostage by autism.
Thursday, January 19, 2012
My Father
"We attract tragedy. We are like the Kennedy's without the sex appeal & money"
My father died 37 years ago.
Today is the 37th anniversary of my fathers death & this is amazing to me.
My father died on a Sunday in the early afternoon. We lived @ 11350 So Bell Chicago Ill 60643. I was 10 years old & in the 5th grade @ St. Cajetans' School. My father was 39 years old when he died. My mother was 36 & had 6 children under the age of 11. My oldest sibling was 11. My youngest sibling was 11 months old. & we are all damaged & flawed & hurt.
My family already lived with our maternal grandmother. I do not remember any changes in our family dynamic & or structure. My grandmother remained our caretaker. & my mother (continued) worked. & my siblings & I largely did what we wanted, What we felt was best & this may or may not had been fine, except for the fact we were children!
My father had a wife, parents, cousins, 6 children and now, 8 grand children. My father was loved and dynamic and stopped existing 37 years ago.
People die. People stop existing. Dead. Done. Final.
& I think Joe is brilliant to realize and verbalize "Bill Myers does not exist". "Bill Myers final day was December 4, 2010".
So much better than passed away, went to heaven etc...straight forward and direct.
When you die, you no longer exist.
My father died 37 years ago.
Today is the 37th anniversary of my fathers death & this is amazing to me.
My father died on a Sunday in the early afternoon. We lived @ 11350 So Bell Chicago Ill 60643. I was 10 years old & in the 5th grade @ St. Cajetans' School. My father was 39 years old when he died. My mother was 36 & had 6 children under the age of 11. My oldest sibling was 11. My youngest sibling was 11 months old. & we are all damaged & flawed & hurt.
My family already lived with our maternal grandmother. I do not remember any changes in our family dynamic & or structure. My grandmother remained our caretaker. & my mother (continued) worked. & my siblings & I largely did what we wanted, What we felt was best & this may or may not had been fine, except for the fact we were children!
My father had a wife, parents, cousins, 6 children and now, 8 grand children. My father was loved and dynamic and stopped existing 37 years ago.
People die. People stop existing. Dead. Done. Final.
& I think Joe is brilliant to realize and verbalize "Bill Myers does not exist". "Bill Myers final day was December 4, 2010".
So much better than passed away, went to heaven etc...straight forward and direct.
When you die, you no longer exist.
This Way Joe
Joe: "Good Night Kate Myers. See me in the morning"
Me:"I will see you in the morning. Good Night"
Joe: Don't forget to see me in the morning"
Me: I will see you in the morning
Joe:"I will sleep in your room so we can remember to see each other in the morning"
Joe's words are tender and kind and backwards.
Joe will say "Do you smell Johnny Test?" What Joe means is, "Do you see Johnny Test?"
Joe confuses Hearing something and seeing something.
"Kate Myers, I smell the snow"
I amnot staying in the moment. I am worried about High School & after High School. This is naughty.
This has been a good week. We have done what we were supposed to and have done it well.
For weeks after Bill died, I rarely dremed of Bill. & then I had raccous sex dreams of Bill. & recentlyI have been having comfort dreams of Bill. Lovely & detailed dreams of Bill and memories & fun Bill & I shared.
Joe will tell me whne he dreams of Bill foloowed by Joe saying "I don't want to dream with Bill".
Me:"I will see you in the morning. Good Night"
Joe: Don't forget to see me in the morning"
Me: I will see you in the morning
Joe:"I will sleep in your room so we can remember to see each other in the morning"
Joe's words are tender and kind and backwards.
Joe will say "Do you smell Johnny Test?" What Joe means is, "Do you see Johnny Test?"
Joe confuses Hearing something and seeing something.
"Kate Myers, I smell the snow"
I amnot staying in the moment. I am worried about High School & after High School. This is naughty.
This has been a good week. We have done what we were supposed to and have done it well.
For weeks after Bill died, I rarely dremed of Bill. & then I had raccous sex dreams of Bill. & recentlyI have been having comfort dreams of Bill. Lovely & detailed dreams of Bill and memories & fun Bill & I shared.
Joe will tell me whne he dreams of Bill foloowed by Joe saying "I don't want to dream with Bill".
Saturday, January 14, 2012
Snow Shoes
Today Joe asked so many great questions.
Joe & I were outside & walking in the snow and Joe was so filled with curiosity & observations & questions.
"Why is lava hot?
"How much does snow cost?"
"How many days old am I?"
Joe brought his Sonic Gang (Fat Sonic, Skinny Sonic, Knuckles, Amy Rose, Tails & baby Tails). We chased & walked & played hide & seek & laughed & teased. Joe said " We are hunting icicles!" & I grabbed a huge icicle and Joe said "You get the trophy". & then "Can I have your trophy?"
& we came home and Joe built transformers and Kreons & staged battles & adventures & was happy.
Joe laughs easily & this makes be happy.
Joe has a beautiful laugh & an incredible face.
Tomorrow Uncle Bobby comes pver for a visit.
Joe & I were outside & walking in the snow and Joe was so filled with curiosity & observations & questions.
"Why is lava hot?
"How much does snow cost?"
"How many days old am I?"
Joe brought his Sonic Gang (Fat Sonic, Skinny Sonic, Knuckles, Amy Rose, Tails & baby Tails). We chased & walked & played hide & seek & laughed & teased. Joe said " We are hunting icicles!" & I grabbed a huge icicle and Joe said "You get the trophy". & then "Can I have your trophy?"
& we came home and Joe built transformers and Kreons & staged battles & adventures & was happy.
Joe laughs easily & this makes be happy.
Joe has a beautiful laugh & an incredible face.
Tomorrow Uncle Bobby comes pver for a visit.
Thursday, January 12, 2012
Tuesday, January 10, 2012
No News
My 2012 New Year's Resolution is too NOT buy any new clothes / shoes etc...for myself. & 9 days into the New Year I have had to stop myself twice from making 2 impulse purchases. 1 pair of slippers from Target. 1 pair of pants from Old Navy.com
Joe is happily back to school & I have had a long nap & now what?
Grocery store
Prescriptions
Drop box off @ food pantry
Make Dr. appointments for me
Use facial gift certificate
Marketing for travel business
Clean apt.
Laundry
Exercise
Walk
Car wash
Joe is happily back to school & I have had a long nap & now what?
Grocery store
Prescriptions
Drop box off @ food pantry
Make Dr. appointments for me
Use facial gift certificate
Marketing for travel business
Clean apt.
Laundry
Exercise
Walk
Car wash
Saturday, January 7, 2012
Progress
We have had 2 BIG achievements.
Yesterday I was in the shower & Joe barged into the bathroom crying and holding "Bumble Bee" (transformer) and demanding I fix "Bumble Bee". I told Joe to look @ the clock & I would be out of the shower & fix "Bumble Bee" in 10 minutes.
& When I finished my shower and used my lotions and put on my pajamas & opened the bathroom door, there was my Joe! Waiting patiently in the kitchen, holding "Bumble Bee" and calmly telling me that I took 12 minutes to come out of the bathroom.
Today Joe & I planned a trip to the grocery store. We made out list. In addition to ordinary groceries, Joe wanted Captain America Fruit Snacks. Ok. Captain America Fruit Snacks went on the list. & I told Joe that the grocery may not have Captain America Fruit Snacks. & Joe was certain the grocery would have the preferred fruit snacks. My stomach knotted as I imagined the tantrum @ the grocery store if there were no Captain America Fruit snacks. & as fate would have it, there were no Captain America Fruit Snacks & there was NO TANTRUM!
TADAAAAAAAAAAAAAA!
We have progress!
Yesterday I was in the shower & Joe barged into the bathroom crying and holding "Bumble Bee" (transformer) and demanding I fix "Bumble Bee". I told Joe to look @ the clock & I would be out of the shower & fix "Bumble Bee" in 10 minutes.
& When I finished my shower and used my lotions and put on my pajamas & opened the bathroom door, there was my Joe! Waiting patiently in the kitchen, holding "Bumble Bee" and calmly telling me that I took 12 minutes to come out of the bathroom.
Today Joe & I planned a trip to the grocery store. We made out list. In addition to ordinary groceries, Joe wanted Captain America Fruit Snacks. Ok. Captain America Fruit Snacks went on the list. & I told Joe that the grocery may not have Captain America Fruit Snacks. & Joe was certain the grocery would have the preferred fruit snacks. My stomach knotted as I imagined the tantrum @ the grocery store if there were no Captain America Fruit snacks. & as fate would have it, there were no Captain America Fruit Snacks & there was NO TANTRUM!
TADAAAAAAAAAAAAAA!
We have progress!
Thursday, January 5, 2012
4 Days Till School!
We are home & I do not know what to say.
I feel lost & tired & lonely & alone.
& Joe somehow manages to grow and bloom and mature and move forward. Joe has been calm and focused and aware and participating in most of my big ideas. baking Brownies, vacuuming, walks, etc...yesterday Joe wanted to take the trash out to the alley by himself.
I am amazed how Joe has figured out the Kre O Construction sets. daily,Joe assembles and disassembles with focus and patience.
Every day Joe makes his daily calander and schegule.
My mom wanted to stay on Sunday night & I said no. Joe goes to school on Monday & Joe comes first. Joe's balance is fragile & I am not taking a risk / having a guest on the night before school starts. I know & understand my mother is hurt & angry. & I am hurt & angry as Joe & I have been home for 19 days & any day except the last day would have been a good day for a visit.
Joe goes back to school in 4 days. Joe is thrilled to be home & building auto bots, transformers & Dragadars & on & on & on....
Read an interesting article written by a woman who did not buy any new clothes or household items for 1 year. This was by design and conscience decision.
Use what you have. Appreciate what you have. Be more aware and less consumed.
I'm in.
No new clothes, pillows, shoes, towels etc...for 1year.
Joe is exempt from this very big idea of mine
Johnny Test - Hate you & your talking dog, your stay @ home dad & your super busy mom....
I feel lost & tired & lonely & alone.
& Joe somehow manages to grow and bloom and mature and move forward. Joe has been calm and focused and aware and participating in most of my big ideas. baking Brownies, vacuuming, walks, etc...yesterday Joe wanted to take the trash out to the alley by himself.
I am amazed how Joe has figured out the Kre O Construction sets. daily,Joe assembles and disassembles with focus and patience.
Every day Joe makes his daily calander and schegule.
My mom wanted to stay on Sunday night & I said no. Joe goes to school on Monday & Joe comes first. Joe's balance is fragile & I am not taking a risk / having a guest on the night before school starts. I know & understand my mother is hurt & angry. & I am hurt & angry as Joe & I have been home for 19 days & any day except the last day would have been a good day for a visit.
Joe goes back to school in 4 days. Joe is thrilled to be home & building auto bots, transformers & Dragadars & on & on & on....
Read an interesting article written by a woman who did not buy any new clothes or household items for 1 year. This was by design and conscience decision.
Use what you have. Appreciate what you have. Be more aware and less consumed.
I'm in.
No new clothes, pillows, shoes, towels etc...for 1year.
Joe is exempt from this very big idea of mine
Johnny Test - Hate you & your talking dog, your stay @ home dad & your super busy mom....
Tuesday, January 3, 2012
Tattle
Joe was napping in the couch & was folding laundry & sorting the laundry on the same couch....& I hear Joe's beautiful voice say "Kate Myers, I am sure you are squishing me."
Monday, January 2, 2012
Let It Snow
Snow today. Walk in the snow today.
Joe & I have to get out of the apartment every day. Out of the apartment & for a long walk. Not out of the apartment & into the car.
The car is so tempting.
The car is (mostly) irresistible.
Walgreen's for prescription refills.
Stop by Uncle B's restaurant for a short visit.
Maybe to Mary's to see a new couch.
Get moving.
Going outside causes (me) mild anxiety. Joe & I are so exposed. & anything can happen & not in a great & fun way.
& bath & shampoo & teeth brushing,
I understand this day is too basic. I understand this day includes no bells & or whistles.
I understand.
Waking up @ 4a is too early. I cannot get a balance or groove to the day. I spend all day thinking / knowing I am exhausted. My head spins & I cannot focus.
& this is the day we will have.
When it comes to laughing, my Joe is an easy customer. Joe laughs easily & readily & willingly. Today Joe & I will share some laughs.
Joe & I have to get out of the apartment every day. Out of the apartment & for a long walk. Not out of the apartment & into the car.
The car is so tempting.
The car is (mostly) irresistible.
Walgreen's for prescription refills.
Stop by Uncle B's restaurant for a short visit.
Maybe to Mary's to see a new couch.
Get moving.
Going outside causes (me) mild anxiety. Joe & I are so exposed. & anything can happen & not in a great & fun way.
& bath & shampoo & teeth brushing,
I understand this day is too basic. I understand this day includes no bells & or whistles.
I understand.
Waking up @ 4a is too early. I cannot get a balance or groove to the day. I spend all day thinking / knowing I am exhausted. My head spins & I cannot focus.
& this is the day we will have.
When it comes to laughing, my Joe is an easy customer. Joe laughs easily & readily & willingly. Today Joe & I will share some laughs.
Sunday, January 1, 2012
New Years Day 2012!
A entire & brand new year & I am thrilled.
Exactly 8 days left of Christmas vacation & I am not thrilled. Most of Joe's Christmas presents were carefully selected to help Joe engage in creative & thoughtful play. & so far, so good.
Kre O Construction sets have proven to be engaging & challenging. The Kre O Construction sets have been assembled & disassembled & reassembled.
Cars 2 Toyko Spin Out (once assembled) has been fun and taken up hours of arranging & rearranging races & spin outs & opening & closing ceremonies & award presentations.
The Pokmon Play Set is the ugliest piece of plastic I have yet seen. The Pokemon Play Set has lots of proverbial bells and whistles and the Pokemon's are busy with trap doors and draw bridges etc...
Toy Story Recycling Center is also ugly & plastic& fun. Cranes & bull dozers push and heave most everything, including Lightening McQueen, Finn McMissell and @ least 3 Pokemon's onto the conveyor belt.
Joe plays & I am grateful for Joe's play skills.
Joe is funny & clever & bright.
1 way or another, by hook or by crook, this child of mine is going to gain patience.
1 way or another, by hook or by crook, I am going to beat 15 pounds off my ass.
Our friend Matthew (15yrs old and patient and extraordinary) is coming over to baby sit Joe & I am going to the LakeView Y to exercise. I have to exercise on a regular basis. I am old and tired and exercise is urgently needed. I have to / I am take better care of my physical & emotional self.
A problem: I am already tired (I am always tired) and after exercise I will be more tired and I will have a full day ahead of me. I hate being tired. I am literally afraid of being more tired. I need patience and energy.
Dear Grown Up Fun,
I am learning to live without you.
Your Old Friend,
Kate
Exactly 8 days left of Christmas vacation & I am not thrilled. Most of Joe's Christmas presents were carefully selected to help Joe engage in creative & thoughtful play. & so far, so good.
Kre O Construction sets have proven to be engaging & challenging. The Kre O Construction sets have been assembled & disassembled & reassembled.
Cars 2 Toyko Spin Out (once assembled) has been fun and taken up hours of arranging & rearranging races & spin outs & opening & closing ceremonies & award presentations.
The Pokmon Play Set is the ugliest piece of plastic I have yet seen. The Pokemon Play Set has lots of proverbial bells and whistles and the Pokemon's are busy with trap doors and draw bridges etc...
Toy Story Recycling Center is also ugly & plastic& fun. Cranes & bull dozers push and heave most everything, including Lightening McQueen, Finn McMissell and @ least 3 Pokemon's onto the conveyor belt.
Joe plays & I am grateful for Joe's play skills.
Joe is funny & clever & bright.
1 way or another, by hook or by crook, this child of mine is going to gain patience.
1 way or another, by hook or by crook, I am going to beat 15 pounds off my ass.
Our friend Matthew (15yrs old and patient and extraordinary) is coming over to baby sit Joe & I am going to the LakeView Y to exercise. I have to exercise on a regular basis. I am old and tired and exercise is urgently needed. I have to / I am take better care of my physical & emotional self.
A problem: I am already tired (I am always tired) and after exercise I will be more tired and I will have a full day ahead of me. I hate being tired. I am literally afraid of being more tired. I need patience and energy.
Dear Grown Up Fun,
I am learning to live without you.
Your Old Friend,
Kate
Thursday, December 29, 2011
Nice Guy, My Guy
Joe received a $50.00 VISA Gift card for Christmas & yesterday we went to TOYS R US so Joe could use his credit card.
& I told Joe he could pick out whatever he wanted as it was his money.
& Joe picked out small gifts for every child in his class.
Play Dough, Silly Putty, Race Cars, Captain America action figure and a new notebook for his teacher, Miss R.
Joe paid for his purchases and when we came home, Joe smashed everything into his back pack for school on January 9.
& I told Joe he could pick out whatever he wanted as it was his money.
& Joe picked out small gifts for every child in his class.
Play Dough, Silly Putty, Race Cars, Captain America action figure and a new notebook for his teacher, Miss R.
Joe paid for his purchases and when we came home, Joe smashed everything into his back pack for school on January 9.
Wednesday, December 28, 2011
Cheers
I smell beer. & this is a frequent occurrence. & there is only 1 beer in my house. Bill's last beer. 2nd shelf of fridge, in the back, towards the right side of the fridge.
There has not been on open beer in my house for for more than 1 year.
Beer in the morning.
Bill & a morning beer.
Bill & morning beers.
Joe received KRE-O construction sets for Christmas (Thank you Aunt Pat) & I was concerned. Concerned Joe would be frustrated. Concerned 325 pieces would be too chaotic for my Joe.
& the KRE-O was a huge hit and Joe patiently followed the 32 page instructional manual and assembled a warrior and then took the warrior apart and followed the 32 page instructional manual and assembled a semi-truck.
& I was amazed.
Today Joe & I have to go to Walgreens to pick up prescriptions and then to Mariano's for groceries.
We will also go for a walk and try to find some fun in a park.
There has not been on open beer in my house for for more than 1 year.
Beer in the morning.
Bill & a morning beer.
Bill & morning beers.
Joe received KRE-O construction sets for Christmas (Thank you Aunt Pat) & I was concerned. Concerned Joe would be frustrated. Concerned 325 pieces would be too chaotic for my Joe.
& the KRE-O was a huge hit and Joe patiently followed the 32 page instructional manual and assembled a warrior and then took the warrior apart and followed the 32 page instructional manual and assembled a semi-truck.
& I was amazed.
Today Joe & I have to go to Walgreens to pick up prescriptions and then to Mariano's for groceries.
We will also go for a walk and try to find some fun in a park.
Tuesday, December 27, 2011
3 Down
Yesterday Joe & I went to Montrose Harbor and saw a Winter White Owl, a really big fish & a wavy Lake Michigan.
Our 8 year old friend wanted to throw rocks into the lake. Joe was ready to go home. Joe cried & shouted & fussed & was able to wait approximately 8 minutes & then we all headed to the car. Our friends called us in the early afternoon & got Joe & I out of the house and into the post Christmas sunshine & wind.
Yesterday we cleaned up our little apartment & today (again) we will clean up our little apartment.
Joe made a 'Game Center". Joe received board games (Connect 4 Launch, Whack A Mole Mania, Scrabble +++) for Christmas and Joe decided the games deserved better than a stack on the the floor. It was interesting & wonderful to see Joe hatch a plan and complete a project on his own. Joe started the game center by completely clearing 3 book shelves of actual books and carefully reviewing & sorting each title. Joe had a stack for his room, a stack for my room & to my delight! A stack to donate!!!! Thanks to Toy Story 3 Joe knows the importance of donating. Joe completed the project ny carefully stacking all of his board games on the shelves.
Last night I used Joe's Wii to watch a movie on NetFlex - "In To The Rabbit Hole" with Nicole Kidman. Earlier in the day, Joe & I used a NetFlex download to do Yoga. We are not especially good @ Yoga, but we will get better. I am hoping to use NetFlex as an escape as opposed to big bowls of heaping carbohydrates
Joe received a VISA gift card for Christmas & was so thrilled to have a "credit card for Joe Myers". The VISA gift card actually has the name "Joe Myers" on the card. Thanks to Uncle Bobby.
I have a family member that is most excellent @ holding a grudge & anger Excellent @ at other things as well, but when it comes to shutting down, this person is the best of the best. I prefer a confrontation. Grudgey prefers a long, long & sometimes, infectious stew. I am a fixer. If a friend or loved one seems to need help, I do my best to resolve the situation, get help and search for a solution. A caveat being: my help / resolution / solution is rarely needed / appreciated / wanted. I am frightened & angry for / towards Grudgey as I cannot fix Grudgey's situation. Grudgey needs to fix a really big and ugly problem. A problem that has affected many people I love. Most importantly, most urgently & what causes most distress and sleepless nights, is that Grudgey's problem has affected my Joe & other tots.
Joe needs better dental hygiene. I have tried dozens of different tooth brushes, tooth paste & gel, flavored & unflavored, Brushing in the AM, Brushing in the PM. Brushing while bathing, brushing while standing, brushing while on the toilet, in the car, on the couch, using the computer. All to no avail...
It is cold and raining in Chicago.
Christmas Vacation Count:
3 down
14 to go
Our 8 year old friend wanted to throw rocks into the lake. Joe was ready to go home. Joe cried & shouted & fussed & was able to wait approximately 8 minutes & then we all headed to the car. Our friends called us in the early afternoon & got Joe & I out of the house and into the post Christmas sunshine & wind.
Yesterday we cleaned up our little apartment & today (again) we will clean up our little apartment.
Joe made a 'Game Center". Joe received board games (Connect 4 Launch, Whack A Mole Mania, Scrabble +++) for Christmas and Joe decided the games deserved better than a stack on the the floor. It was interesting & wonderful to see Joe hatch a plan and complete a project on his own. Joe started the game center by completely clearing 3 book shelves of actual books and carefully reviewing & sorting each title. Joe had a stack for his room, a stack for my room & to my delight! A stack to donate!!!! Thanks to Toy Story 3 Joe knows the importance of donating. Joe completed the project ny carefully stacking all of his board games on the shelves.
Last night I used Joe's Wii to watch a movie on NetFlex - "In To The Rabbit Hole" with Nicole Kidman. Earlier in the day, Joe & I used a NetFlex download to do Yoga. We are not especially good @ Yoga, but we will get better. I am hoping to use NetFlex as an escape as opposed to big bowls of heaping carbohydrates
Joe received a VISA gift card for Christmas & was so thrilled to have a "credit card for Joe Myers". The VISA gift card actually has the name "Joe Myers" on the card. Thanks to Uncle Bobby.
I have a family member that is most excellent @ holding a grudge & anger Excellent @ at other things as well, but when it comes to shutting down, this person is the best of the best. I prefer a confrontation. Grudgey prefers a long, long & sometimes, infectious stew. I am a fixer. If a friend or loved one seems to need help, I do my best to resolve the situation, get help and search for a solution. A caveat being: my help / resolution / solution is rarely needed / appreciated / wanted. I am frightened & angry for / towards Grudgey as I cannot fix Grudgey's situation. Grudgey needs to fix a really big and ugly problem. A problem that has affected many people I love. Most importantly, most urgently & what causes most distress and sleepless nights, is that Grudgey's problem has affected my Joe & other tots.
Joe needs better dental hygiene. I have tried dozens of different tooth brushes, tooth paste & gel, flavored & unflavored, Brushing in the AM, Brushing in the PM. Brushing while bathing, brushing while standing, brushing while on the toilet, in the car, on the couch, using the computer. All to no avail...
It is cold and raining in Chicago.
Christmas Vacation Count:
3 down
14 to go
Monday, December 26, 2011
YAY! Followed By Shouts of Joy!
& A wonderful response from my brother regarding my request that my brother spend quality, one on one time with my Joe on a regular scheduled basis.
A mentor, an Uncle, a male adult who Joe can grow to trust.
Thank you dear brother!
A mentor, an Uncle, a male adult who Joe can grow to trust.
Thank you dear brother!
& Bill Would Be Right....
Bill Myers & I both love / loved Joe completely & fully & conditionally.
& Joe needs complete & full & unconditional love.
& This is why I miss Bill Myers. & This is reason #67,98989,000. that Joe Myers needs his dead father.
If I could call Bill Myers on the phone, and tell Bill someone stared @ Joe, or confronted me about Joe or shouted @ Joe or disciplined Joe, or did not want to sit next o Joe, Bill Myers would say:
"You try too hard sweetheart."
"Fuck them Kate".
"They're assholes, remember how exciting it was when Joe made friends @ the RedHook Pool?"
Or,
"So what, the have their own stuff. let it go."
This morning Joe woke up happy & rested & shouted "my cousins are great".
& Joe needs complete & full & unconditional love.
& This is why I miss Bill Myers. & This is reason #67,98989,000. that Joe Myers needs his dead father.
If I could call Bill Myers on the phone, and tell Bill someone stared @ Joe, or confronted me about Joe or shouted @ Joe or disciplined Joe, or did not want to sit next o Joe, Bill Myers would say:
"You try too hard sweetheart."
"Fuck them Kate".
"They're assholes, remember how exciting it was when Joe made friends @ the RedHook Pool?"
Or,
"So what, the have their own stuff. let it go."
This morning Joe woke up happy & rested & shouted "my cousins are great".
Sunday, December 25, 2011
Reminder
Please remind me to never again leave my house.
Admittedly I am overly sensitive to and for my Joe. When Joe and I are around people, I am on high alert. Around our family, our neighbors, the staff @ Joe's school, the checkers @ Mariano's Grocery Store, folks on the street et all else.
I look for reactions - believe I am reading reactions. I watch to see how people are looking @ / seeing my child.
& often / mostly, it is not good.
In Brooklyn, people were straightforward - direct and honest.
Brooklyn Guy with baggy pants "Hey - what's wrong with your kid?"
Me:"autism - right now my son & I are doing our best. ok?"
Brooklyn Guy with baggy pants : "Oh, sorry, my cousin too" & then a story and a smile.
In Chicago, folks seem embarrassed for us / by us & strained by my Joe & I. This includes my family.
Joe wants a sleepover. I have coaxed and cajoled Joe's cousins and my sister and my brother.
No takers.
No offers.
Joe & I applied to Big Brothers / Big Sisters United Way Program. I did not follow thru after reading the child molesting news out of Penn State.
Joe needs a positive and reliable male influence. I have asked a family member to give Joe 30 minutes of one on one time every 2 weeks. This was hard for me to ask. This is a big risk. If this person says no, then what?
I know...I know..I know...
The only way to increase Joe's social skills is to get out in the community. Go to the grocery & 7-11& park & play lot & shoe store & Christmas dinner et all else...
Honestly, I am sad and disappointed and lonely and furious.
This afternoon, Joe & I drove 90 minutes to my sisters house for a casual XMAS dinner and a trip with cousins to see ChipWrecked
. Turns out no one wants to sit next to Joe in the movies. Turns out Joe wants to sit next to everyone in the movies.
We left the movies close to 6p and drove back to Chicago. Joe cried and whined the first 60 miles and had fully blown tantrums for the last 30 miles.
Turns out the Toll Taker on the Illinois Toll Road - Waukegan Toll Plaza is an expert on Child development. "That boy is too big to be crying like that". "That were my kid, Christmas presents would be returned!". Turns out the Toll Taker on the Illinois Toll Road - NorthBrook Toll Plaza also has 2 cents to add towards my parenting skills.
I am not sleeping.
For so long, I was a magical sleeper. Sleep whenever I wanted / needed. & Now I am awake most of the night & my day starting between 4 - 5a, when Joe starts his day.
I am exhausted.
Admittedly I am overly sensitive to and for my Joe. When Joe and I are around people, I am on high alert. Around our family, our neighbors, the staff @ Joe's school, the checkers @ Mariano's Grocery Store, folks on the street et all else.
I look for reactions - believe I am reading reactions. I watch to see how people are looking @ / seeing my child.
& often / mostly, it is not good.
In Brooklyn, people were straightforward - direct and honest.
Brooklyn Guy with baggy pants "Hey - what's wrong with your kid?"
Me:"autism - right now my son & I are doing our best. ok?"
Brooklyn Guy with baggy pants : "Oh, sorry, my cousin too" & then a story and a smile.
In Chicago, folks seem embarrassed for us / by us & strained by my Joe & I. This includes my family.
Joe wants a sleepover. I have coaxed and cajoled Joe's cousins and my sister and my brother.
No takers.
No offers.
Joe & I applied to Big Brothers / Big Sisters United Way Program. I did not follow thru after reading the child molesting news out of Penn State.
Joe needs a positive and reliable male influence. I have asked a family member to give Joe 30 minutes of one on one time every 2 weeks. This was hard for me to ask. This is a big risk. If this person says no, then what?
I know...I know..I know...
The only way to increase Joe's social skills is to get out in the community. Go to the grocery & 7-11& park & play lot & shoe store & Christmas dinner et all else...
Honestly, I am sad and disappointed and lonely and furious.
This afternoon, Joe & I drove 90 minutes to my sisters house for a casual XMAS dinner and a trip with cousins to see ChipWrecked
. Turns out no one wants to sit next to Joe in the movies. Turns out Joe wants to sit next to everyone in the movies.
We left the movies close to 6p and drove back to Chicago. Joe cried and whined the first 60 miles and had fully blown tantrums for the last 30 miles.
Turns out the Toll Taker on the Illinois Toll Road - Waukegan Toll Plaza is an expert on Child development. "That boy is too big to be crying like that". "That were my kid, Christmas presents would be returned!". Turns out the Toll Taker on the Illinois Toll Road - NorthBrook Toll Plaza also has 2 cents to add towards my parenting skills.
I am not sleeping.
For so long, I was a magical sleeper. Sleep whenever I wanted / needed. & Now I am awake most of the night & my day starting between 4 - 5a, when Joe starts his day.
I am exhausted.
Saturday, December 24, 2011
Later The Very Same Christmas Eve
So far so good....
On our way to Navy Pier we stopped to see our friend's the W's. A house with 2 beautiful Christmas trees, 2 parents, and 4 boys. Boys that all accept and genuinely like Joe. To quote The W's 12 year old son "Don't worry, Kate. We got your back". Joe was great & comfortable & engaged & thrilled to be with boys and having fun.
Winter Wonderland @ Navy Pier was fine. We spent 2 hours @ Navy Pier and Joe was happy and tired when we left.
& we come home and Joe is tired and beyond cranky and brimming with anxiety....
& Joe was asleep @ 5p....
Santa packages are wrapped and ready....
Joe & I are going to see my sister and her family tomorrow. We will arrive in time for a 3p Christmas dinner and then be home in time for bed.
Tomorrow is Christmas. Tomorrow is our second Christmas without Bill. Tonight, after Joe was in his jammies and Joe had written a note for Santa, I asked Joe if he remembered Christmas in Brooklyn with Bill. Joe asked " what date?" "what date Kate Myers" I told Joe, 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009. And Joe's face turned upside down and Joe crawled onto my lap and said "No".
On our way to Navy Pier we stopped to see our friend's the W's. A house with 2 beautiful Christmas trees, 2 parents, and 4 boys. Boys that all accept and genuinely like Joe. To quote The W's 12 year old son "Don't worry, Kate. We got your back". Joe was great & comfortable & engaged & thrilled to be with boys and having fun.
Winter Wonderland @ Navy Pier was fine. We spent 2 hours @ Navy Pier and Joe was happy and tired when we left.
& we come home and Joe is tired and beyond cranky and brimming with anxiety....
& Joe was asleep @ 5p....
Santa packages are wrapped and ready....
Joe & I are going to see my sister and her family tomorrow. We will arrive in time for a 3p Christmas dinner and then be home in time for bed.
Tomorrow is Christmas. Tomorrow is our second Christmas without Bill. Tonight, after Joe was in his jammies and Joe had written a note for Santa, I asked Joe if he remembered Christmas in Brooklyn with Bill. Joe asked " what date?" "what date Kate Myers" I told Joe, 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009. And Joe's face turned upside down and Joe crawled onto my lap and said "No".
BAH
This is the 1st Christmas that Joe is fully participating. Joe is filled with anxiety & anticipation.
Joe is worried for Santa.
"But Sleigh's can't fly".
"It's too cold for a reindeer"
"Rudolph needs his mother".
"What time will Santa bring my presents?"
It is 601a and I am thinking I should hand over the presents. Joe cannot wrap his head around the idea that a guy named Santa is flying through the sky & around the world to deliver presents to every single child.
"How many children in the whole world?"
How many children in Chicago?"
"Does Santa know my address?"
Every 4 minutes Joe asks "Is Santa safe?"
Joe has a friend named O. & tomorrow is O's birthday. O's birthday on Christmas is a source for additional anxiety.
"Does Santa bring O's birthday present?" "How does Santa carry birthday presents?"
& all day Joe will worry and fret and question and ask and slowly begin to unravel.
& all for a phony big reveal. & it is just Joe & I & I know the regular rules do not apply, but Christmas? Santa comes on Christmas Eve when all the children are sleeping.
Right?
BAH!
Today I am taking Joe to Navy Pier. We will leave @ 945a and arrive Navy Pier when Winter Wonderland opens @ 10a. & we will hope for some fun.
& we will hope for some relief form Joe's anxiety & anticipation.
Yesterday as Joe was getting of the bus, Joe shouted to his friends "Merry Christmas Guys!". Hearing Joe wish his friends a Merry Christmas was teh perfect present for me.
Joe is worried for Santa.
"But Sleigh's can't fly".
"It's too cold for a reindeer"
"Rudolph needs his mother".
"What time will Santa bring my presents?"
It is 601a and I am thinking I should hand over the presents. Joe cannot wrap his head around the idea that a guy named Santa is flying through the sky & around the world to deliver presents to every single child.
"How many children in the whole world?"
How many children in Chicago?"
"Does Santa know my address?"
Every 4 minutes Joe asks "Is Santa safe?"
Joe has a friend named O. & tomorrow is O's birthday. O's birthday on Christmas is a source for additional anxiety.
"Does Santa bring O's birthday present?" "How does Santa carry birthday presents?"
& all day Joe will worry and fret and question and ask and slowly begin to unravel.
& all for a phony big reveal. & it is just Joe & I & I know the regular rules do not apply, but Christmas? Santa comes on Christmas Eve when all the children are sleeping.
Right?
BAH!
Today I am taking Joe to Navy Pier. We will leave @ 945a and arrive Navy Pier when Winter Wonderland opens @ 10a. & we will hope for some fun.
& we will hope for some relief form Joe's anxiety & anticipation.
Yesterday as Joe was getting of the bus, Joe shouted to his friends "Merry Christmas Guys!". Hearing Joe wish his friends a Merry Christmas was teh perfect present for me.
Friday, December 23, 2011
Happy Me
Today is a day of all days!
Joe cleaned his own bottom & got completely dressed by himself!
We have had our very own Christmas miracle.
WHOOOOOOOOOOWHOOOOOOOOOOOOOOOO
Last day of school before the start of Joe's 17 day Christmas vacation & I am starting to panic.
17 days
We are not seeing family & friends for Christmas.
We will see family & friends during the 17 day school break.
When Joe & I & Bill were in Brooklyn, holidays were easy. We would have presents and then what closely resembled a ordinary day. Christmas in Brooklyn means stores are open, movies are an option, people are everywhere and China Town and Little Italy are bustling. In Chicago, no one is anywhere but their families living room.
I have an infection in the nail bed on big toe. It is slightly uncomfortable and icky and gross and clearly an issue for an old bag.
--
Joe cleaned his own bottom & got completely dressed by himself!
We have had our very own Christmas miracle.
WHOOOOOOOOOOWHOOOOOOOOOOOOOOOO
Last day of school before the start of Joe's 17 day Christmas vacation & I am starting to panic.
17 days
We are not seeing family & friends for Christmas.
We will see family & friends during the 17 day school break.
When Joe & I & Bill were in Brooklyn, holidays were easy. We would have presents and then what closely resembled a ordinary day. Christmas in Brooklyn means stores are open, movies are an option, people are everywhere and China Town and Little Italy are bustling. In Chicago, no one is anywhere but their families living room.
I have an infection in the nail bed on big toe. It is slightly uncomfortable and icky and gross and clearly an issue for an old bag.
--
Thursday, December 22, 2011
3 Days
Christmas is 3 days away.
The trunk of my car is packed full with Santa gifts for Joe Myers.
My closet is hiding the final Hanukkah gifts for Joe.
Joe & Hanukkah.
OY!
1. We are not Jewish
2. I have no idea why my Joe has decided he is Jewish and celebrating Hanukkah.
Me: "Joe, we are not Jewish. You have to be Jewish to get Hanukkah presents"
Joe: "But I love being Jewish"
& so we are having Hanukkah.
Joe's Christmas & Hanukkah presents have been carefully selected to help get us through the 17 day holiday break from school. Transformer Construction set, Magna Block Building Set, Board Games etc...
Joe & I are going to spend XMAS @ home. Together in our apartment.
During the XMAS break, we hope to have a few day trips to Wisconsin and Grand Beach.
Joe has been fine & calm & settled. I do not want to risk mayhem.
The trunk of my car is packed full with Santa gifts for Joe Myers.
My closet is hiding the final Hanukkah gifts for Joe.
Joe & Hanukkah.
OY!
1. We are not Jewish
2. I have no idea why my Joe has decided he is Jewish and celebrating Hanukkah.
Me: "Joe, we are not Jewish. You have to be Jewish to get Hanukkah presents"
Joe: "But I love being Jewish"
& so we are having Hanukkah.
Joe's Christmas & Hanukkah presents have been carefully selected to help get us through the 17 day holiday break from school. Transformer Construction set, Magna Block Building Set, Board Games etc...
Joe & I are going to spend XMAS @ home. Together in our apartment.
During the XMAS break, we hope to have a few day trips to Wisconsin and Grand Beach.
Joe has been fine & calm & settled. I do not want to risk mayhem.
Tuesday, December 20, 2011
Monday, December 19, 2011
2 Man Job
When we lived in Brooklyn, when Joe was between 3 & 5yrs old, Joe loved the park. & In Brooklyn, parks and play lots were plentiful.
After school, we went to the park.
On Saturdays we went to the park.
On Sundays we went to the park.
The park.
On school days, Bill & I would get Joe off the bus & we would go to the park. We would be in the park for @ least 2 hours and often had a pizza dinner in the park. Parks & pizza.
Pizza & parks.
We had no regard to weather. We went to the park every day.
Parks always had kids and running buddies and action and scooters and soccer balls etc...
On Saturdays, Joe & I would go to the park by 9a. Bill would join us in the early afternoon & as soon as Bill arrived, I wanted to go home. Go home by myself & be quiet. Bill would want me to stay. "Kate, stay" & I would reply "This is not a 2 man job". "It's your turn." & then Bill would offer to go to the deli & get me a diet coke & water balloons for Joe & I would stay....
& would we take turns pushing Joe on the swings, navigating Joe's social interactions, defending Joe, guarding Joe.
& Bill & I would sit on a bench and read The New Yorker or the New York Post and talk about the people in the park & Brooklyn & Joe & Joe & Joe & Joe.
& I miss Bill. Bill was always responsive & willing & able to talk and about Joe. Dissect Joe's behaviors. Worry for Joe. Encourage me. Encourage Joe. Talk for hours about Joe's achievements & what was missing, what was wrong, how we could make the world exactly right for our Joe...
& now Bill is dead.
After Joe's school dance performance, I cried.
I missed Bill's willingness to be amazed by our Joe. I
I had dozens of amazing photo's of Joe Myers, dancing on stage. Singing on stage. Celebrating on stage.
& so what?
Bill did not see.
Yes - my mom and sisters all chimed in "So cute" but it is so much more than cute when Joe Myers sloppily bounds on stage and dances along to "Beat It".
I was absolutely wrong.
This is indeed a 2 man job.
Last night Joe was sick. Vomiting and other nasty stuff. No fever. & I wanted to call someone and say "Oh, Joe's sick and I am worried" but whomever I called would know Joe would be fine...But Bill would "go there with me". Bill and I would fret about seizures & medication & thermometers & pajamas et all else...
After school, we went to the park.
On Saturdays we went to the park.
On Sundays we went to the park.
The park.
On school days, Bill & I would get Joe off the bus & we would go to the park. We would be in the park for @ least 2 hours and often had a pizza dinner in the park. Parks & pizza.
Pizza & parks.
We had no regard to weather. We went to the park every day.
Parks always had kids and running buddies and action and scooters and soccer balls etc...
On Saturdays, Joe & I would go to the park by 9a. Bill would join us in the early afternoon & as soon as Bill arrived, I wanted to go home. Go home by myself & be quiet. Bill would want me to stay. "Kate, stay" & I would reply "This is not a 2 man job". "It's your turn." & then Bill would offer to go to the deli & get me a diet coke & water balloons for Joe & I would stay....
& would we take turns pushing Joe on the swings, navigating Joe's social interactions, defending Joe, guarding Joe.
& Bill & I would sit on a bench and read The New Yorker or the New York Post and talk about the people in the park & Brooklyn & Joe & Joe & Joe & Joe.
& I miss Bill. Bill was always responsive & willing & able to talk and about Joe. Dissect Joe's behaviors. Worry for Joe. Encourage me. Encourage Joe. Talk for hours about Joe's achievements & what was missing, what was wrong, how we could make the world exactly right for our Joe...
& now Bill is dead.
After Joe's school dance performance, I cried.
I missed Bill's willingness to be amazed by our Joe. I
I had dozens of amazing photo's of Joe Myers, dancing on stage. Singing on stage. Celebrating on stage.
& so what?
Bill did not see.
Yes - my mom and sisters all chimed in "So cute" but it is so much more than cute when Joe Myers sloppily bounds on stage and dances along to "Beat It".
I was absolutely wrong.
This is indeed a 2 man job.
Last night Joe was sick. Vomiting and other nasty stuff. No fever. & I wanted to call someone and say "Oh, Joe's sick and I am worried" but whomever I called would know Joe would be fine...But Bill would "go there with me". Bill and I would fret about seizures & medication & thermometers & pajamas et all else...
Sunday, December 18, 2011
Nothing Much...
355a & I hear Angry Birds on my cell phone.
Joe is awake.
& then I am awake and making tea and pancakes.
& we both drag our asses all day.
Yesterday we had snow. To escape our apartment & tired & crabby attitudes, Joe & I went for a walk.
Walked a few blocks & then to Murphy's for lunch.
Today we are driving Aunt Ellie to work & have to get groceries & then it is only 9a & both Joe & I are tired.
Christmas.
Christmas is 1 week from today & I do not yet have a plan.
We have a Christmas tree.
We have presents.
But we have no plan....
We could go to my mom's in Grand Beach or we could go to my sisters in Wisconsin or we could stay home. All options are risky.
@ my mom's & sisters, we have the risk of Joe's behaviors & tantrums followed by looks of horror on the faces of my loved ones. The almost constant refrain of "Kate, Joe is swearing" "Kate, Joe is spitting" "Kate, this is disgusting" "If Joe were my kid...." "What does Joe's doctor say?" & then well intentioned loved one's raising their voices towards Joe, disciplining Joe & taking their own children out of the room & away from Joe.
@ home, alone, we run the risk of self pity, crying jags and a huge and bountiful platter of "I miss Bill".
On Christmas Eve, Joe & I could head to the Winter Wonderland @ Navy Pier, have a late lunch @ Ed Debevic's and then home to get ready for Santa. On Christmas morning Joe will have a kaboodle of toys & games & we could spend the morning playing etc...
& then Christmas 2011 will be over.
Last year, our 1st Christmas without Bill was a disaster. Joe & I were @ my mom's and we stayed in our pajamas until I cried & we left in the midst of Christmas dinner.
This year is not our 1st Christmas without Bill.
This Christmas will not be a disaster.
Joe has a full week of school this week and then vacation until January 9, 2012.
Joe is awake.
& then I am awake and making tea and pancakes.
& we both drag our asses all day.
Yesterday we had snow. To escape our apartment & tired & crabby attitudes, Joe & I went for a walk.
Walked a few blocks & then to Murphy's for lunch.
Today we are driving Aunt Ellie to work & have to get groceries & then it is only 9a & both Joe & I are tired.
Christmas.
Christmas is 1 week from today & I do not yet have a plan.
We have a Christmas tree.
We have presents.
But we have no plan....
We could go to my mom's in Grand Beach or we could go to my sisters in Wisconsin or we could stay home. All options are risky.
@ my mom's & sisters, we have the risk of Joe's behaviors & tantrums followed by looks of horror on the faces of my loved ones. The almost constant refrain of "Kate, Joe is swearing" "Kate, Joe is spitting" "Kate, this is disgusting" "If Joe were my kid...." "What does Joe's doctor say?" & then well intentioned loved one's raising their voices towards Joe, disciplining Joe & taking their own children out of the room & away from Joe.
@ home, alone, we run the risk of self pity, crying jags and a huge and bountiful platter of "I miss Bill".
On Christmas Eve, Joe & I could head to the Winter Wonderland @ Navy Pier, have a late lunch @ Ed Debevic's and then home to get ready for Santa. On Christmas morning Joe will have a kaboodle of toys & games & we could spend the morning playing etc...
& then Christmas 2011 will be over.
Last year, our 1st Christmas without Bill was a disaster. Joe & I were @ my mom's and we stayed in our pajamas until I cried & we left in the midst of Christmas dinner.
This year is not our 1st Christmas without Bill.
This Christmas will not be a disaster.
Joe has a full week of school this week and then vacation until January 9, 2012.
Friday, December 16, 2011
Bravo!
Today was Joe's Winter Assembly @ Agassiz School & it was fun & funny & uplifting & filled with hard work & practice & joy.
Joe and his class #207 were extraordinary!
& the entire auditorium cheered for the 207 kids.
Joe and his class #207 were extraordinary!
& the entire auditorium cheered for the 207 kids.
Show Time!
Last night (actually 4p) I went to see a movie. A movie all by myself! Alone & happy, drinking diet coke in the dark watching The Descendants.
It was thrilling.
& Joe was home & happy with Miss C. reading books & racing cars.
I know Joe was happy & comfortable while I was @ the movies because I returned home @ 710p to find Joe in his jammies and cozy and sleeping on the couch.
This morning while Joe & I were waiting for the bus, we did not see handsome dog walking guy.
Today is a big day @ Agassiz School.
Today is Winter Assembly!
Joe and his guys from 207, will be performing a dance especially choreographed to Michael Jackson's "Beat It". The 207 guys are a tough crew. The 207 guys all have autism, all have behaviors & all are difficult,
& Mrs C, drama & movement teacher from Agassiz School is able to get the 207 guys dancing to a beat!
Neither Joe nor I attended the 2010 Winter Assembly.
I was too nervous.
I could not take the risk of Joe being aggressive or disruptive on stage.
It was thrilling.
& Joe was home & happy with Miss C. reading books & racing cars.
I know Joe was happy & comfortable while I was @ the movies because I returned home @ 710p to find Joe in his jammies and cozy and sleeping on the couch.
This morning while Joe & I were waiting for the bus, we did not see handsome dog walking guy.
Today is a big day @ Agassiz School.
Today is Winter Assembly!
Joe and his guys from 207, will be performing a dance especially choreographed to Michael Jackson's "Beat It". The 207 guys are a tough crew. The 207 guys all have autism, all have behaviors & all are difficult,
& Mrs C, drama & movement teacher from Agassiz School is able to get the 207 guys dancing to a beat!
Neither Joe nor I attended the 2010 Winter Assembly.
I was too nervous.
I could not take the risk of Joe being aggressive or disruptive on stage.
Thursday, December 15, 2011
Dog Walker
821a Joe & I go downstairs to the porch to wait for the bus
829a Joe starts crying and whining and shouting "I want my bus"
833a Handsome dog walker verbally assaults Joe
"Hey - Stop Crying! I don't need to listen to your bullshit you spoiled kid" "Set some limits for your kid"
& handsome dog walker is calm and steady and standing 12 inches from Joe & I.
& I respond
"Someday you will have a child, or someone you love will have a child and things will be less than perfect. & then some ass*&^% like you will make an awful day worse"
"Walk your effin dog on a different block"
835a Handsome dog walker is cool as a cucumber and walks away.
I hug & hold onto Joe & then Joe gets on the bus hitting & spitting.
Joe & I see handsome dog walker most every day.
829a Joe starts crying and whining and shouting "I want my bus"
833a Handsome dog walker verbally assaults Joe
"Hey - Stop Crying! I don't need to listen to your bullshit you spoiled kid" "Set some limits for your kid"
& handsome dog walker is calm and steady and standing 12 inches from Joe & I.
& I respond
"Someday you will have a child, or someone you love will have a child and things will be less than perfect. & then some ass*&^% like you will make an awful day worse"
"Walk your effin dog on a different block"
835a Handsome dog walker is cool as a cucumber and walks away.
I hug & hold onto Joe & then Joe gets on the bus hitting & spitting.
Joe & I see handsome dog walker most every day.
OKEY DOKEY
I sleep when Joe sleeps.
I wake when Joe wakes.
We are usually asleep by 8p and awake by 5a.
I would like to be awake and alone and reading or watching a movie, but I cannot. The idea of being tired scares me.
The very thought being tired makes me panic. I panic. I panic that I will be tired and Joe will have a seizure and I will not be able to properly react. I panic Joe will need a hospital and I will be tired and not able to care for Joe.
& yet I am most always tired.
I take an anti depressant called Cymbalta and Cymbalta effectively controls my emotions. I get through my day / night without long crying jags and am able to push back thoughts of Bill Myers and his death and stop endless thoughts of my Joe's future and how we will manage etc...but Cymbalta makes me sleepy and removed. Due to Cymbalta, I move like a tired turtle. Due to Cymbalta , I am also able to rationalize my weight gain.
I see a shrink twice a month.
I have blood tests and a moderate to severe thyroid issue.
I am fine.
I want to be better.
Today I am having a breakfast with my uncle and brother.
Today I want to see my friend M. M's daughter is waiting on early decision from NYU & I want to be part of anticpating something great.
Today we have a baby sitter from 4-6p. & I am looking forward to seeing a movie. A movie that is not animated.
I wake when Joe wakes.
We are usually asleep by 8p and awake by 5a.
I would like to be awake and alone and reading or watching a movie, but I cannot. The idea of being tired scares me.
The very thought being tired makes me panic. I panic. I panic that I will be tired and Joe will have a seizure and I will not be able to properly react. I panic Joe will need a hospital and I will be tired and not able to care for Joe.
& yet I am most always tired.
I take an anti depressant called Cymbalta and Cymbalta effectively controls my emotions. I get through my day / night without long crying jags and am able to push back thoughts of Bill Myers and his death and stop endless thoughts of my Joe's future and how we will manage etc...but Cymbalta makes me sleepy and removed. Due to Cymbalta, I move like a tired turtle. Due to Cymbalta , I am also able to rationalize my weight gain.
I see a shrink twice a month.
I have blood tests and a moderate to severe thyroid issue.
I am fine.
I want to be better.
Today I am having a breakfast with my uncle and brother.
Today I want to see my friend M. M's daughter is waiting on early decision from NYU & I want to be part of anticpating something great.
Today we have a baby sitter from 4-6p. & I am looking forward to seeing a movie. A movie that is not animated.
Wednesday, December 14, 2011
More Great. More Perfect
Joe had a terrific day.
Great day @ school and a great day @ the JCC after care @ Agassiz.
When I arrived @ Joe's school, Joe was sitting with a group of kids working on math homework. Independently working on a math sheet subtracting 3 digit equations complete with carrying and borrowing. Currently there are 2 children with Autism in the JCC after care @ Agassiz.
So often Joe is able and great and willing and a child who is a positive force in his classroom & school.
& Every so often, Joe is not able to participate, is destructive and volatile and aggressive.
When Joe & I arrived home, Joe hung up two large sheets of paper on the wall in the living room.
On sheet #1, Joe wrote "In Joe's Brain".
On sheet #2, Joe wrote "In Joe's Book"
& Joe said it was time for Social Studies.
& Joe asked me "What color is a good idea?"
On the side of the paper labeled "Joe's Brain" Joe listed numbers and math equations.
On the side of the paper labeled "Joe's Book" Joe drew pictures.
Last night was picture perfect.
We had dinner.
We read 3 books.
We built Lego's and transformers and Joe talked about "the guys" . Joe now refers to his classmates as "the guys".
I am considering taking Joe to "Winter Wonderland @ Navy Pier" on 12.15.11.
Great day @ school and a great day @ the JCC after care @ Agassiz.
When I arrived @ Joe's school, Joe was sitting with a group of kids working on math homework. Independently working on a math sheet subtracting 3 digit equations complete with carrying and borrowing. Currently there are 2 children with Autism in the JCC after care @ Agassiz.
So often Joe is able and great and willing and a child who is a positive force in his classroom & school.
& Every so often, Joe is not able to participate, is destructive and volatile and aggressive.
When Joe & I arrived home, Joe hung up two large sheets of paper on the wall in the living room.
On sheet #1, Joe wrote "In Joe's Brain".
On sheet #2, Joe wrote "In Joe's Book"
& Joe said it was time for Social Studies.
& Joe asked me "What color is a good idea?"
On the side of the paper labeled "Joe's Brain" Joe listed numbers and math equations.
On the side of the paper labeled "Joe's Book" Joe drew pictures.
Last night was picture perfect.
We had dinner.
We read 3 books.
We built Lego's and transformers and Joe talked about "the guys" . Joe now refers to his classmates as "the guys".
I am considering taking Joe to "Winter Wonderland @ Navy Pier" on 12.15.11.
Tuesday, December 13, 2011
Birthdays & Harmonica's
Today Joe asked "Do I get a present for harmonica?"
Me "Ask me the same question using different words"
Joe"Do we have harmonica?"
Me "oh, Hanukkah!" "Of course you can have a present for Hanukkah!" "People who celebrate Hanukkah get 8 presents"
Joe "Harmonica players are lucky"
Last night was calm & steady & fun.
Joe & I did homework, had dinner and built a intricate racetrack using Jenga blocks, train tracks and Lincoln Logs & we were both asleep by 8p.
This morning (like every morning) we were up @ 430a....Hate this (too) early morning wake up. By 9a I am tired and facing a full day.
Today Joe has school and then participates in the JCC after school program @ Agassiz. Today I meet with a new pediatrician and ENT to discuss Joe having tubes removed form his ears. Ear tubes are to fall out after 12 - 18 months. This did not happen. & the tubes need to be removed.
Today I have to pick up Joe's prescriptions (medications are compounded and have a 14 day shelf life), get groceries and bake a birthday cake for Joe's friend SRB2.
SRB2 = Sonic Robo Blast 2. Also affectionately called "Fat Sonic".
SRB2 or "Fat Sonic" is the blue hedgehog from the Sonic series. SRB2 has been Joe's friend for a very long while and today we celebrate SRB2's birthday.
Me "Ask me the same question using different words"
Joe"Do we have harmonica?"
Me "oh, Hanukkah!" "Of course you can have a present for Hanukkah!" "People who celebrate Hanukkah get 8 presents"
Joe "Harmonica players are lucky"
Last night was calm & steady & fun.
Joe & I did homework, had dinner and built a intricate racetrack using Jenga blocks, train tracks and Lincoln Logs & we were both asleep by 8p.
This morning (like every morning) we were up @ 430a....Hate this (too) early morning wake up. By 9a I am tired and facing a full day.
Today Joe has school and then participates in the JCC after school program @ Agassiz. Today I meet with a new pediatrician and ENT to discuss Joe having tubes removed form his ears. Ear tubes are to fall out after 12 - 18 months. This did not happen. & the tubes need to be removed.
Today I have to pick up Joe's prescriptions (medications are compounded and have a 14 day shelf life), get groceries and bake a birthday cake for Joe's friend SRB2.
SRB2 = Sonic Robo Blast 2. Also affectionately called "Fat Sonic".
SRB2 or "Fat Sonic" is the blue hedgehog from the Sonic series. SRB2 has been Joe's friend for a very long while and today we celebrate SRB2's birthday.
Monday, December 12, 2011
Cousins Rock
Yesterday was great fun.
Joe & I drove to WI. to celebrate my sister's birthday with my sister and her 2 daughters.
& we had fun.
We had lunch @ Red Robin ( never had been ) and went to Build A Bear Workshop. My nieces were all over Joe and Joe was all over the idea if building a stuffed animal. After Build a Bear, Joe & his cousins took a holiday train trip through the mall & my sister & I were able to chat and laugh about a 43rd birthday celebration @ Red Robin & Build A Bear
I have become FaceBook friend's with David Royko. For most Chicagoan's, David's father is a celebrity. For me, David and his wife are celebrities and hero's and trail blazers. Their son is a young adult with autism. David's FB page has photo's of David and his wife assisting Ben with shaving.
Until the moment of seeing David's FB page, I had never given one second of energy or thought to Joe's puberty & physical and emotional and hormonal changes.
I suspect, Joe's puberty and adolescence will make Joe's childhood seem like a day @ the beach. A day @ the beach for typical folks. Not a day @ the beach for Joe & I.
This is a busy week.
Joe has school every day. Joe has JCC After School @ Agassiz on Tuesday, I have my shrink on Wed, A breakfast with my Uncle on Thursday and Joe is preforming in the Agassiz School Assembly on Friday.
Oh, & Santa preparations & groceries, clean the bathroom, & meals & prescription pick up's and post office & et all else....
Oh, & I have to call my mother.
Joe & I drove to WI. to celebrate my sister's birthday with my sister and her 2 daughters.
& we had fun.
We had lunch @ Red Robin ( never had been ) and went to Build A Bear Workshop. My nieces were all over Joe and Joe was all over the idea if building a stuffed animal. After Build a Bear, Joe & his cousins took a holiday train trip through the mall & my sister & I were able to chat and laugh about a 43rd birthday celebration @ Red Robin & Build A Bear
I have become FaceBook friend's with David Royko. For most Chicagoan's, David's father is a celebrity. For me, David and his wife are celebrities and hero's and trail blazers. Their son is a young adult with autism. David's FB page has photo's of David and his wife assisting Ben with shaving.
Until the moment of seeing David's FB page, I had never given one second of energy or thought to Joe's puberty & physical and emotional and hormonal changes.
I suspect, Joe's puberty and adolescence will make Joe's childhood seem like a day @ the beach. A day @ the beach for typical folks. Not a day @ the beach for Joe & I.
This is a busy week.
Joe has school every day. Joe has JCC After School @ Agassiz on Tuesday, I have my shrink on Wed, A breakfast with my Uncle on Thursday and Joe is preforming in the Agassiz School Assembly on Friday.
Oh, & Santa preparations & groceries, clean the bathroom, & meals & prescription pick up's and post office & et all else....
Oh, & I have to call my mother.
Sunday, December 11, 2011
Mini Cooper's & More
Joe woke up @ 439a & so did I.
& we are both tired & crabby.
& we are meeting my sister & kids for a birthday lunch in Gurnee.
& I am looking forward to using a blow dryer and wearing a dress. Even if it is for a birthday lunch in a far flung suburb & a trip to Build A Bear to see the Chipmunks.
& it is 21 degrees in Chicago and the freezing temperatures makes my apartment cold and the back porch closed for the season.
My back porch was MY BACK PORCH. My place for tea & (sometimes) cigarettes.
& Joe is full of mischief...."ohooooooooo, Kate Myers.......I am drawing a Mini Cooper on the table.....
& Joe has been calling me "idiot" and I am about to flip my wig....
I know I know I know.....& still I am frustrated and angry and want to rest.
The noise and requests are constant.
"Spell gumball Kate Myers"
"What color are my legs?" "Not white Kate Myers." "My legs are pink"
"Look @ me Kate Myers"
& I am right next to Joe and fully engaged and cannot distract Joe with a project book or computer or story or tickle...
Quiet.
Please
& we are both tired & crabby.
& we are meeting my sister & kids for a birthday lunch in Gurnee.
& I am looking forward to using a blow dryer and wearing a dress. Even if it is for a birthday lunch in a far flung suburb & a trip to Build A Bear to see the Chipmunks.
& it is 21 degrees in Chicago and the freezing temperatures makes my apartment cold and the back porch closed for the season.
My back porch was MY BACK PORCH. My place for tea & (sometimes) cigarettes.
& Joe is full of mischief...."ohooooooooo, Kate Myers.......I am drawing a Mini Cooper on the table.....
& Joe has been calling me "idiot" and I am about to flip my wig....
I know I know I know.....& still I am frustrated and angry and want to rest.
The noise and requests are constant.
"Spell gumball Kate Myers"
"What color are my legs?" "Not white Kate Myers." "My legs are pink"
"Look @ me Kate Myers"
& I am right next to Joe and fully engaged and cannot distract Joe with a project book or computer or story or tickle...
Quiet.
Please
Friday, December 9, 2011
Patience Makes Perfect
Aunt Ellie got Joe thinking about a Christmas List ...and tonight Joe asked
"How many on my list?" "How many on my Christmas list?"
I randomly said "7" & Joe numbered his paper 1 - 7 and went to work.
Joe listed 7 friends to by presents for...
& that my friends is a True Christmas List!
Tonight Joe fell asleep on the couch while I was in my shower.
I love my shower.
The shower drowns out the noise of my household and I linger.
& then lotions and pajamas and sleeping socks.
50/50 Joe will interrupt my shower.
"Kate Myers I need you".
"Kate Myers the bunnies need you"
& on & on & on.
Tonight my shower was all quiet.
Tonight my shower was all mine.
Joe's patience tops out @ 9 minutes. Joe will wait 9 minutes. 9 minutes for the bus. 9 minutes for dinner. 9 minutes for help with his computer's power source. 9 minutes.
I am helping / teaching / urging / insisting Joe stretch his patience. Joe will ask for help and I will coax and cajole and extra 10 / 20 / 30 seconds. & then KABOOM.
@4p Joe & I picked up Aunt Ellie from a haircut for a ride home. We all agreed to for a quick stop @ Jewel. Joe was fine and happy and content.
& then Joe starts obsessing towards the time. "How long Kate Myers?" "How long till I am home Kate Myers?" "How long Kate Myers?" "How long till I am home Kate Myers?" I tell Joe we will be home by 515p. if it were not for unexpected traffic on Lincoln Ave, we would have been fine. But there was traffic on Lincoln Ave and things were not fine.
Joe starts crying before we dropped Aunt Ellie @ her apartment. Joe starts shouting and crying "Just get me home Kate Myers".
& I remind Joe we have to drop Ellie off @ her apartment and then we will go home.
& Joe says "Push Aunt Ellie out". "Just do it Kate Myers".
I did not push Aunt Ellie out of the car.
Stayed on the plan and ignored Joe's crying and fuss and shouting and drove home.
& All is fine.
"How many on my list?" "How many on my Christmas list?"
I randomly said "7" & Joe numbered his paper 1 - 7 and went to work.
Joe listed 7 friends to by presents for...
& that my friends is a True Christmas List!
Tonight Joe fell asleep on the couch while I was in my shower.
I love my shower.
The shower drowns out the noise of my household and I linger.
& then lotions and pajamas and sleeping socks.
50/50 Joe will interrupt my shower.
"Kate Myers I need you".
"Kate Myers the bunnies need you"
& on & on & on.
Tonight my shower was all quiet.
Tonight my shower was all mine.
Joe's patience tops out @ 9 minutes. Joe will wait 9 minutes. 9 minutes for the bus. 9 minutes for dinner. 9 minutes for help with his computer's power source. 9 minutes.
I am helping / teaching / urging / insisting Joe stretch his patience. Joe will ask for help and I will coax and cajole and extra 10 / 20 / 30 seconds. & then KABOOM.
@4p Joe & I picked up Aunt Ellie from a haircut for a ride home. We all agreed to for a quick stop @ Jewel. Joe was fine and happy and content.
& then Joe starts obsessing towards the time. "How long Kate Myers?" "How long till I am home Kate Myers?" "How long Kate Myers?" "How long till I am home Kate Myers?" I tell Joe we will be home by 515p. if it were not for unexpected traffic on Lincoln Ave, we would have been fine. But there was traffic on Lincoln Ave and things were not fine.
Joe starts crying before we dropped Aunt Ellie @ her apartment. Joe starts shouting and crying "Just get me home Kate Myers".
& I remind Joe we have to drop Ellie off @ her apartment and then we will go home.
& Joe says "Push Aunt Ellie out". "Just do it Kate Myers".
I did not push Aunt Ellie out of the car.
Stayed on the plan and ignored Joe's crying and fuss and shouting and drove home.
& All is fine.
Thursday, December 8, 2011
Tacky to Boast?
This is from Joe's Speech Therapist @ Agassiz School.
A gem of a school with an incredible staff that just happens to be part of the Chicago Public School System.
The people. The people. The people.
It is all about the people and staff within a program / building.
& I quote
"Your son is such a pleasure to work with. Every day that he comes to speech he participates, is cooperative and completes his work. Today we worked more on identifying what others are thinking We also are continuing to video record conversations and then identify what we need to improve upon. I am so proud of him!
Sarah XXXXXXX
Speech-Language Pathologist
Agassiz Elementary
& this is the same child that tantrumed and scratched and hit and bit @ and towards me for hours just three days ago...
Autism never gives me a chance to gain balance.
& I have a 23 page application to complete. I am applying for financial aide for Joe to attend the JCC After School program @ Agassiz School.
I can afford 1 day a week.
1 day a week = 84.00 per month.
This I can (not easily) afford.
I am applying for financial aid so Joe can attend two days per week. Joe needs interaction in a ordinary social setting. Joe needs interaction in a ordinary social setting with skilled and patient care givers.
I was working on a trip to France. For clients.
& Joe saw photo's of France & said " Is that Paris?" "Are we going to Paris" and I say "We could"
& Joe says "We can't go to France. We don't speak Spainish".
Joe brings up a strong point.
A gem of a school with an incredible staff that just happens to be part of the Chicago Public School System.
The people. The people. The people.
It is all about the people and staff within a program / building.
& I quote
"Your son is such a pleasure to work with. Every day that he comes to speech he participates, is cooperative and completes his work. Today we worked more on identifying what others are thinking We also are continuing to video record conversations and then identify what we need to improve upon. I am so proud of him!
Sarah XXXXXXX
Speech-Language Pathologist
Agassiz Elementary
& this is the same child that tantrumed and scratched and hit and bit @ and towards me for hours just three days ago...
Autism never gives me a chance to gain balance.
& I have a 23 page application to complete. I am applying for financial aide for Joe to attend the JCC After School program @ Agassiz School.
I can afford 1 day a week.
1 day a week = 84.00 per month.
This I can (not easily) afford.
I am applying for financial aid so Joe can attend two days per week. Joe needs interaction in a ordinary social setting. Joe needs interaction in a ordinary social setting with skilled and patient care givers.
I was working on a trip to France. For clients.
& Joe saw photo's of France & said " Is that Paris?" "Are we going to Paris" and I say "We could"
& Joe says "We can't go to France. We don't speak Spainish".
Joe brings up a strong point.
Yes or No
Can you or can you not turn right in red (unless otherwise posted) in the state of Illinois?
Love my car.
Hate my car.
Love my car.
Hate my car.
Just A Lot of Blah
This morning Joe is relaxed.
And Joe scratched @ me & I was able to stop the behavior before it escalated.
I am using (almost) constant verbal cue's
"No scratching"
"No hitting"
"You cannot bite"
"Spitting is not acceptable"
I hate the aggressive behaviors. I hate cringing and recoiling when my child gets close to hug me.
I remember Joe's relentless head banging from 13 months to 5 years. Joe would bang his head out of frustration, anxiety, for communication et all else...My child had a constant bump / bruise on his forehead for years. Joe's head banging was not rhythmic.
Joe's head banging was brutal and disturbing.
& When I would see or anticipate my Joe's head banging, I would reach for Joe. Hold Joe close to protect my child from himself & more than once, I saw stars. I saw stars when Joe banged his head into mine.
I cannot / do not trust Joe's behaviors & this is what keeps Joe & I in our apartment.
This is my weakness.
1 outing a day (for now) is all I can manage.
And we have so many great days. More good days than bad, & still I am waiting / expecting aggressive behaviors.
& Joe is 9.
& as Joe likes to remind me "You are 48 Kate Myers".
& I have to do better.
Do better for Joe.
Do better for me.
And Joe scratched @ me & I was able to stop the behavior before it escalated.
I am using (almost) constant verbal cue's
"No scratching"
"No hitting"
"You cannot bite"
"Spitting is not acceptable"
I hate the aggressive behaviors. I hate cringing and recoiling when my child gets close to hug me.
I remember Joe's relentless head banging from 13 months to 5 years. Joe would bang his head out of frustration, anxiety, for communication et all else...My child had a constant bump / bruise on his forehead for years. Joe's head banging was not rhythmic.
Joe's head banging was brutal and disturbing.
& When I would see or anticipate my Joe's head banging, I would reach for Joe. Hold Joe close to protect my child from himself & more than once, I saw stars. I saw stars when Joe banged his head into mine.
I cannot / do not trust Joe's behaviors & this is what keeps Joe & I in our apartment.
This is my weakness.
1 outing a day (for now) is all I can manage.
And we have so many great days. More good days than bad, & still I am waiting / expecting aggressive behaviors.
& Joe is 9.
& as Joe likes to remind me "You are 48 Kate Myers".
& I have to do better.
Do better for Joe.
Do better for me.
Wednesday, December 7, 2011
Selfish
Since Joe's robust and rage filled and violent tantrum, Joe has been quiet and distnat and remorseful. Joe has been sullen and seems wholey alone.
I don't know what to do for my child.
& I disregarded Joe's need for me and Joe's need for comfort and went to a dinner. Our baby sitter arrived @ 430p and I was home by 730p.
& While I was gone, Joe was quiet and distant and remorseful and sullen and wholely alone.
& I had a great dinner & converstaion & laughed & listend & talked.
& I was a grown up! In a restaurant that did not serve chicken nuggets and sat @ a table that had no ketchup.
& now my Joe is sleeping and seemingly content and comfortable.
& now I am relieved and quiet and grateful.
I don't know what to do for my child.
& I disregarded Joe's need for me and Joe's need for comfort and went to a dinner. Our baby sitter arrived @ 430p and I was home by 730p.
& While I was gone, Joe was quiet and distant and remorseful and sullen and wholely alone.
& I had a great dinner & converstaion & laughed & listend & talked.
& I was a grown up! In a restaurant that did not serve chicken nuggets and sat @ a table that had no ketchup.
& now my Joe is sleeping and seemingly content and comfortable.
& now I am relieved and quiet and grateful.
And Now What?
I am heartfully sad.
& I am embarressed.
& I am shamed.
Seeing & feeling the scratches on my face and hands fills me with anxiety and dread.
How can my Joe be kind and loving and laughing and content and then so filled with rage?
I don't have a next step.
& I am embarressed.
& I am shamed.
Seeing & feeling the scratches on my face and hands fills me with anxiety and dread.
How can my Joe be kind and loving and laughing and content and then so filled with rage?
I don't have a next step.
Tuesday, December 6, 2011
Bad Bad Day
Last night I went to sleep with a sense that my world was in order.
That my world was in good order.
This morning Joe woke up @ 445a repeatedly SCREAMING "I am hungry" "HELP ME",
I could not move fast enough.
While I got Joe a milk and microwaved pizza - wanting / begging to avoid a full blown tantrum, Joe's emotions escalated.
Once Joe seemed content on the couch and snuggled up with his bunnies and chipmunks and his breakfast, I turned on my email and KABOOM.
& it lasted from 445a - 710a and then Joe cried and whimpered and wanting hugging and comfort until the bud came @ 821a.
& Joe is @ school and his 1st day of "after care". 1 day a week Joe is registered to participate in "after care"@ Agassiz School. "After care" is to be a tool to help Joe with typical socialization.
& I am afraid.
While Joe is tantrumiing Joe is hitting and scratching and bitting and screaming and filled with rage and shouting awful words. When Joe is tantruming he has a way of being right next me as well in front of me. I cannot move away from my Joe. If I go to my room, Joe & his violent and agressive tantrum follows. If I sit on the couch, Joe & his violent and cruel and frightening tantrum follows.
& When the tantrum settled, we were both crying & tired & scared. & Joe kept whimpering and climbing on me "We are friends Kate Myers" "We are friends".
We have had horrible and unimaginable tantrums.
& today was our worse.
My arms ache and I am scratched and and sad and heart broken.
& I am worried for Joe.
& I am scared Joe had all day to be scared and sad.
Autism allows no comfort.
Autism is a constant beast lurking under the surface and gives us no warning or little control.
That my world was in good order.
This morning Joe woke up @ 445a repeatedly SCREAMING "I am hungry" "HELP ME",
I could not move fast enough.
While I got Joe a milk and microwaved pizza - wanting / begging to avoid a full blown tantrum, Joe's emotions escalated.
Once Joe seemed content on the couch and snuggled up with his bunnies and chipmunks and his breakfast, I turned on my email and KABOOM.
& it lasted from 445a - 710a and then Joe cried and whimpered and wanting hugging and comfort until the bud came @ 821a.
& Joe is @ school and his 1st day of "after care". 1 day a week Joe is registered to participate in "after care"@ Agassiz School. "After care" is to be a tool to help Joe with typical socialization.
& I am afraid.
While Joe is tantrumiing Joe is hitting and scratching and bitting and screaming and filled with rage and shouting awful words. When Joe is tantruming he has a way of being right next me as well in front of me. I cannot move away from my Joe. If I go to my room, Joe & his violent and agressive tantrum follows. If I sit on the couch, Joe & his violent and cruel and frightening tantrum follows.
& When the tantrum settled, we were both crying & tired & scared. & Joe kept whimpering and climbing on me "We are friends Kate Myers" "We are friends".
We have had horrible and unimaginable tantrums.
& today was our worse.
My arms ache and I am scratched and and sad and heart broken.
& I am worried for Joe.
& I am scared Joe had all day to be scared and sad.
Autism allows no comfort.
Autism is a constant beast lurking under the surface and gives us no warning or little control.
Monday, December 5, 2011
Dreams Do Come True!
Today Joe had a great day @ school.
This afternoon Joe was great for his hair cut.
& after Joe's hair cut we found someplace great!
Absolutely wonderful!
We found a huge and working recycling center just off of Clybourn near Racine!
Giant "claws" picking up real cars, 1 by 1 by 1 and dropping the cars on a cnnveyer belt for recycling! Plows and trash and recycling and cranes and et all else....It was mesmorizing and intriguing and interesting.
A feast for Joe's senses. A huge and giant construction set complete with working recycling center / garbage dump.
Joe's words ran so fast "ISEEITKATEMYERS" "LOOKATTHE CARKATEMYERS" "SMELLITAKTEMYERS"
Toy Story 3 came to life right before Joe's eyes!
Joe was thrilled
& I was too.
xoxox
This afternoon Joe was great for his hair cut.
& after Joe's hair cut we found someplace great!
Absolutely wonderful!
We found a huge and working recycling center just off of Clybourn near Racine!
Giant "claws" picking up real cars, 1 by 1 by 1 and dropping the cars on a cnnveyer belt for recycling! Plows and trash and recycling and cranes and et all else....It was mesmorizing and intriguing and interesting.
A feast for Joe's senses. A huge and giant construction set complete with working recycling center / garbage dump.
Joe's words ran so fast "ISEEITKATEMYERS" "LOOKATTHE CARKATEMYERS" "SMELLITAKTEMYERS"
Toy Story 3 came to life right before Joe's eyes!
Joe was thrilled
& I was too.
xoxox
Back to The Future
Joe "Kate Myers, are you my commander?"
Me "yes"
Joe "are your pajamas your uniform?"
& Joe Myers makes me happy & better & braver every single day....
Today is the day for Joe's holiday hair cut.
3 haircuts a year.
Late Spring
Back to School
Christmas.
3 visits a year to Kid Snips is all Joe will tolerate.
3 visits a year is all Kid Snips will tolerate.
In Chicago, barber shops are fewer and literally, far between. We now go to Kid Snips on Clybourne. Kid Snips is fine & Joe is able to get a haircut. Joe is adorable with long or short hair but long & shaggy hair adds to our already chaotic demeanor.
In Brooklyn, there are barber shops on every block. We would start out with the barber shops closest to home and slowly edge out of our neighborhood towards Barber shops that did not know us. Towards barber shops that had not seen our tantrums and heard our yelling. In Brooklyn, everything happens on the street. In Brooklyn, people use their neighborhood. In Brooklyn, people sit on their stoops / porches and in the summer, will often move a couch to the sidewalk for more comfortable seating. In Brooklyn, a trip to the park is an all day adventure. In Brooklyn, you may not know you neighbors names, but you know their details and consequences. You see who is working and who is not by the amount of time they spend on their stoop / porch. You see who has a happy marriage and who has a not so happy marriage by who is sitting next to whom on their stoop / porch. & on & on & on it goes....You see kids doing homework and kids hanging out on the corner. You see who rides the trains and who takes taxis & car services.
Brooklyn wears it's life on it's sleeve.
In Brooklyn you do not have secrets.
In Brooklyn you do not need secrets because most everyone has seen most everything.
In Brooklyn, none of our neighbors knew our names but they all knew Joe loved his scooter and ice pops from the corner deli. In Brooklyn our neighbor kids raced Joe on his scooter and would shout "Hey Little Man - You waiting on your bus?" "Oh Little Man - you giving your mama trouble?" In Brooklyn our neighbors did not know Bill's name but knew his bike and Yankee hat. & all of our neighbors knew that Bill & Joe & I all belonged together...
In Chicago, our neighbors are silent.
Yesterday marked the 1 year anniversary of Bill's death.
& now we continue to go forward.
Me "yes"
Joe "are your pajamas your uniform?"
& Joe Myers makes me happy & better & braver every single day....
Today is the day for Joe's holiday hair cut.
3 haircuts a year.
Late Spring
Back to School
Christmas.
3 visits a year to Kid Snips is all Joe will tolerate.
3 visits a year is all Kid Snips will tolerate.
In Chicago, barber shops are fewer and literally, far between. We now go to Kid Snips on Clybourne. Kid Snips is fine & Joe is able to get a haircut. Joe is adorable with long or short hair but long & shaggy hair adds to our already chaotic demeanor.
In Brooklyn, there are barber shops on every block. We would start out with the barber shops closest to home and slowly edge out of our neighborhood towards Barber shops that did not know us. Towards barber shops that had not seen our tantrums and heard our yelling. In Brooklyn, everything happens on the street. In Brooklyn, people use their neighborhood. In Brooklyn, people sit on their stoops / porches and in the summer, will often move a couch to the sidewalk for more comfortable seating. In Brooklyn, a trip to the park is an all day adventure. In Brooklyn, you may not know you neighbors names, but you know their details and consequences. You see who is working and who is not by the amount of time they spend on their stoop / porch. You see who has a happy marriage and who has a not so happy marriage by who is sitting next to whom on their stoop / porch. & on & on & on it goes....You see kids doing homework and kids hanging out on the corner. You see who rides the trains and who takes taxis & car services.
Brooklyn wears it's life on it's sleeve.
In Brooklyn you do not have secrets.
In Brooklyn you do not need secrets because most everyone has seen most everything.
In Brooklyn, none of our neighbors knew our names but they all knew Joe loved his scooter and ice pops from the corner deli. In Brooklyn our neighbor kids raced Joe on his scooter and would shout "Hey Little Man - You waiting on your bus?" "Oh Little Man - you giving your mama trouble?" In Brooklyn our neighbors did not know Bill's name but knew his bike and Yankee hat. & all of our neighbors knew that Bill & Joe & I all belonged together...
In Chicago, our neighbors are silent.
Yesterday marked the 1 year anniversary of Bill's death.
& now we continue to go forward.
Saturday, December 3, 2011
Rise & Shine
554a and we have been up for more than 2 hours.
Yesterday I purchased an alarm clock. A bedside clock. A clock that I could manipulate and set early etc...
Joe is painstakingly committed to a 4a wake up. My plan was to set the clock 2 hours early and give us a 6a wake up.
Busted. I was busted.
@ 4a Joe work up and saw 6a on the clock and said "have you tricked me?" "let's get up".
Yesterday I purchased an alarm clock. A bedside clock. A clock that I could manipulate and set early etc...
Joe is painstakingly committed to a 4a wake up. My plan was to set the clock 2 hours early and give us a 6a wake up.
Busted. I was busted.
@ 4a Joe work up and saw 6a on the clock and said "have you tricked me?" "let's get up".
Friday, December 2, 2011
Leonard Cohen
A few days after Bill died, an old friend's of Bill sent me the lyrics to Leonard Cohen's "Bird on a Wire".
It is appropiate and moving and true.
& I miss Bill
Like a bird on the wire,
Like a drunk in a midnight choir
I have tried in my way to be free.
Like a worm on a hook,
Like a knight from some old fashioned book
I have saved all my ribbons for thee.
If i, if I have been unkind,
I hope that you can just let it go by.
If i, if I have been untrue
I hope you know it was never to you.
Like a baby, stillborn,
Like a beast with his horn
I have torn everyone who reached out for me.
But I swear by this song
And by all that I have done wrong
I will make it all up to thee.
I saw a beggar leaning on his wooden crutch,
He said to me, you must not ask for so much.
And a pretty woman leaning in her darkened door,
She cried to me, hey, why not ask for more?
Oh like a bird on the wire,
Like a drunk in a midnight choir I have tried in my way to be free.
It is appropiate and moving and true.
& I miss Bill
Like a bird on the wire,
Like a drunk in a midnight choir
I have tried in my way to be free.
Like a worm on a hook,
Like a knight from some old fashioned book
I have saved all my ribbons for thee.
If i, if I have been unkind,
I hope that you can just let it go by.
If i, if I have been untrue
I hope you know it was never to you.
Like a baby, stillborn,
Like a beast with his horn
I have torn everyone who reached out for me.
But I swear by this song
And by all that I have done wrong
I will make it all up to thee.
I saw a beggar leaning on his wooden crutch,
He said to me, you must not ask for so much.
And a pretty woman leaning in her darkened door,
She cried to me, hey, why not ask for more?
Oh like a bird on the wire,
Like a drunk in a midnight choir I have tried in my way to be free.
Glory Be To The Father
Last night Joe asked "Can we stay up all night?" "It will be great and we can watch TV ALL NIGHT". Of course I cheered "Oh, staying up all night IS A GREAT IDEA" & of course Joe was asleep by 8p.
Last night was fun.
Last night Joe asked "What is a Christmas cookie?" Joe asked his first question less than 2 years ago. Less than two years ago, Joe asked his dad "What are you watching?". Joe is nine. Joe was seven when he asked his first question.
After school (usually) Joe is quiet and withdrawn. Joe will sit with his books & computer & LEGO's for 2 - 3 hours. & Joe insists I sit / am very near to him. & I almost always comply.
I am literally inching my way towards Joe's Independence. Not sitting so close, not sitting on the same couch, not sitting in the same room...
While Joe reads his books or is on line or building LEGO's, I too am on line. or reading The New Yorker and or child development books. I do not talk on the phone.
Phone calls make me nervous and Joe has tendency towards tantrums when I am on the phone. To create a tolerance for phone calls, I have fake calls.
Practice. Practice. Practice.
Joe & I reherse and practice and imagine and discuss and prompt.
Ready. Ready. Ready.
Independence for Joe, from me is moving along like a heard of tired and hung over turtles.
Somehow the morning bus routine has been perfect for the past three days.
Tomorrow is the Christmas tree lighting @ Wrigley Field.
I asked Joe if he wanted to go.
"What time do we go?"
"What time is it finished?"
"What time do we get home?"
"Can Ellie Come?"
"No Thank You Kate Myers. Let's stay home and be cozy".
When Bill died, I stopped praying. Not because I was angry with god or any obvious reason. Honestly, I am not sure why I stopped praying. Maybe I was too exhausted? Maybe I was too sad. I don't know why I stopped praying. Within the past year, I have occasionally prayed and had to remind myself to not pray. I bartered a deal within the universe. I would not pray for 1 year and Joe would be a calmer, more comfortable, more able child who would enjoy an occasional day / night. I wanted to know I could move myself and my child forward. I wanted to know that on 12.4.11 - 1 year after Bill's death, that I would feel relief and comfort. Withholding prayer will guarantee that after 1 full year of mourning and grief and struggle and emotional battle, I would feel relief and comfort and gratitude.
On 12.4.11 I will pray.
I will pray for strength and acceptance and patience and give thanks.
In 2011, Joe & I did something great and horrifying and unimaginable. We survived and grew and loved and learned and cried and grieved and celebrated and had a year without our Bill.
I am proud of us.
Last night was fun.
Last night Joe asked "What is a Christmas cookie?" Joe asked his first question less than 2 years ago. Less than two years ago, Joe asked his dad "What are you watching?". Joe is nine. Joe was seven when he asked his first question.
After school (usually) Joe is quiet and withdrawn. Joe will sit with his books & computer & LEGO's for 2 - 3 hours. & Joe insists I sit / am very near to him. & I almost always comply.
I am literally inching my way towards Joe's Independence. Not sitting so close, not sitting on the same couch, not sitting in the same room...
While Joe reads his books or is on line or building LEGO's, I too am on line. or reading The New Yorker and or child development books. I do not talk on the phone.
Phone calls make me nervous and Joe has tendency towards tantrums when I am on the phone. To create a tolerance for phone calls, I have fake calls.
Practice. Practice. Practice.
Joe & I reherse and practice and imagine and discuss and prompt.
Ready. Ready. Ready.
Independence for Joe, from me is moving along like a heard of tired and hung over turtles.
Somehow the morning bus routine has been perfect for the past three days.
Tomorrow is the Christmas tree lighting @ Wrigley Field.
I asked Joe if he wanted to go.
"What time do we go?"
"What time is it finished?"
"What time do we get home?"
"Can Ellie Come?"
"No Thank You Kate Myers. Let's stay home and be cozy".
When Bill died, I stopped praying. Not because I was angry with god or any obvious reason. Honestly, I am not sure why I stopped praying. Maybe I was too exhausted? Maybe I was too sad. I don't know why I stopped praying. Within the past year, I have occasionally prayed and had to remind myself to not pray. I bartered a deal within the universe. I would not pray for 1 year and Joe would be a calmer, more comfortable, more able child who would enjoy an occasional day / night. I wanted to know I could move myself and my child forward. I wanted to know that on 12.4.11 - 1 year after Bill's death, that I would feel relief and comfort. Withholding prayer will guarantee that after 1 full year of mourning and grief and struggle and emotional battle, I would feel relief and comfort and gratitude.
On 12.4.11 I will pray.
I will pray for strength and acceptance and patience and give thanks.
In 2011, Joe & I did something great and horrifying and unimaginable. We survived and grew and loved and learned and cried and grieved and celebrated and had a year without our Bill.
I am proud of us.
Electric EEL & Daytranna & Me
Yesterday Joe & went to our regular (every 90 days) appointment @ the Pediatric Child Development Center, Illinois Advocate Hospital.
Joe grew 1.5 inches
Gained no weight
Blood pressure OK
Medications will remain the same (Daytranna and Clonidine)
Will start OT and Social Skills Group.
A minor, perhaps major issue is that our beloved (not kidding, beloved) Walgreens is out of stock of Daytranna and we are out of Daytranna patches. The Daytranna can be ordered but will not be available until Friday.
1 week + No patches = system failure.
The Walgreens on Broadway @ Diversy may have 1 box of Daytranna as well as the Target Pharmacy on Sunnyside @ Broadway.
My day will (literally) not be completed until I find Daytranna.
I feel a great deal of anxiety regarding the availability of Daytranna and most everything else.
Gratitude.
An old and dear friend of mine has donated a brand new & beautiful IPAD to my Joe's classroom.
This donation is beyond generous and so many kids will benefit and will be such a wonderful addition to room #207 @ Agassiz School.
Thank you
Thank you
Thank you & amazing.
& My cell found was found!
Today is Friday. Once school ends @ 240p, Joe will not want to leave our apartment until school starts on Monday morning. I will coax and cajole our participation @ a Family Swim @ the LakeView Y on Sunday @ 130p.
Joe is wonderful.
Joe is stubborn.
Joe is weird.
= all fine and interesting qualities in moderation.
Beware of the zealot.
I need to promote my services as a travel planner. Not plan a trip to Disney - better planned on line, by you, but manage your corp travel and holidays and leisure travel. I need income. I teeter on month to month checks and this is frightening and uncomfortable.
A few days ago I watched a movie. This was not usual. I rarely take the time to watch a movie. If I have more than 60 minutes of free time, I nap. I sleep.
"Last Summer, In The Hamptoms" Nice dialogue and probably written as a play.
Family & summer drama in East Hampton, NY.
& I quote "Our family is like a barrel of electric eel - swimming in circles and stinging and shocking and hurting one another"
A truth: If you want different circumstances, you must change your actions. You can not keep doing everything the exact same way and expect a different result.
Motion creates motion.
I love my brother and sisters and mother but I have (temporarily) closed my boarders. I have spent too much time in my families business. As my youngest sister generously reminded me "I am 39. I am fine". Of course this reminder came during a family fight.
& from now on, when someone says they are fine, I will believe.
Joe grew 1.5 inches
Gained no weight
Blood pressure OK
Medications will remain the same (Daytranna and Clonidine)
Will start OT and Social Skills Group.
A minor, perhaps major issue is that our beloved (not kidding, beloved) Walgreens is out of stock of Daytranna and we are out of Daytranna patches. The Daytranna can be ordered but will not be available until Friday.
1 week + No patches = system failure.
The Walgreens on Broadway @ Diversy may have 1 box of Daytranna as well as the Target Pharmacy on Sunnyside @ Broadway.
My day will (literally) not be completed until I find Daytranna.
I feel a great deal of anxiety regarding the availability of Daytranna and most everything else.
Gratitude.
An old and dear friend of mine has donated a brand new & beautiful IPAD to my Joe's classroom.
This donation is beyond generous and so many kids will benefit and will be such a wonderful addition to room #207 @ Agassiz School.
Thank you
Thank you
Thank you & amazing.
& My cell found was found!
Today is Friday. Once school ends @ 240p, Joe will not want to leave our apartment until school starts on Monday morning. I will coax and cajole our participation @ a Family Swim @ the LakeView Y on Sunday @ 130p.
Joe is wonderful.
Joe is stubborn.
Joe is weird.
= all fine and interesting qualities in moderation.
Beware of the zealot.
I need to promote my services as a travel planner. Not plan a trip to Disney - better planned on line, by you, but manage your corp travel and holidays and leisure travel. I need income. I teeter on month to month checks and this is frightening and uncomfortable.
A few days ago I watched a movie. This was not usual. I rarely take the time to watch a movie. If I have more than 60 minutes of free time, I nap. I sleep.
"Last Summer, In The Hamptoms" Nice dialogue and probably written as a play.
Family & summer drama in East Hampton, NY.
& I quote "Our family is like a barrel of electric eel - swimming in circles and stinging and shocking and hurting one another"
A truth: If you want different circumstances, you must change your actions. You can not keep doing everything the exact same way and expect a different result.
Motion creates motion.
I love my brother and sisters and mother but I have (temporarily) closed my boarders. I have spent too much time in my families business. As my youngest sister generously reminded me "I am 39. I am fine". Of course this reminder came during a family fight.
& from now on, when someone says they are fine, I will believe.
Wednesday, November 30, 2011
Mid Day May Day
Mid day 911 call from Joe's school.
This does not often happen. Joe's teachers are professional. Joe's teachers handle and deal and challenge and teach.
& Joe's teacher has put together a plan and I am grateful and will follow.
Joe will remain @ school until dismissal and Joe's teachers will work towards calming and settling Joe.
There is no apparent reason why Joe broke down/
I will meet Joe as school is dismissed and walk Joe home.
I am worried. The tantrum must be aggressive and on going as this tantrum caused a 911 mid day phone call.
I am concerned.
The mid day report mentioned that Joe had a great morning and loved the field trip to the "Good Night Moon" play & when Joe returned to his classroom, he began tantruming and crying and chanting "I miss my mom".
Joe will call me "mom" while tantruming - all other times I am "Kate Myers".
When Joe & I get home, Joe will want to be hugged and held for hours. I will wrap Joe tightly in a blanket and rub his back and listen to Joe whimper his sadness.
I read an article that referred to severe tantrums as "Behavioral Seizures".
Tomorrow is our appointemnt with out Neuro - Psyche.
This does not often happen. Joe's teachers are professional. Joe's teachers handle and deal and challenge and teach.
& Joe's teacher has put together a plan and I am grateful and will follow.
Joe will remain @ school until dismissal and Joe's teachers will work towards calming and settling Joe.
There is no apparent reason why Joe broke down/
I will meet Joe as school is dismissed and walk Joe home.
I am worried. The tantrum must be aggressive and on going as this tantrum caused a 911 mid day phone call.
I am concerned.
The mid day report mentioned that Joe had a great morning and loved the field trip to the "Good Night Moon" play & when Joe returned to his classroom, he began tantruming and crying and chanting "I miss my mom".
Joe will call me "mom" while tantruming - all other times I am "Kate Myers".
When Joe & I get home, Joe will want to be hugged and held for hours. I will wrap Joe tightly in a blanket and rub his back and listen to Joe whimper his sadness.
I read an article that referred to severe tantrums as "Behavioral Seizures".
Tomorrow is our appointemnt with out Neuro - Psyche.
Fund Raiser
My Joe's autism program @ Agassiz School is a blessing & incredible & skilled & able & willing to care for kids that need hand over hand learning 8 hours a day.
& the Autism Program @ Agassiz School needs donations for everything from 2 IPADS to Velcro.
Because of the expertise and love @ Agassiz School, Joe has become an academic star and almost sometimes, even a good citizen. Without Agassiz School, Joe's story would have a very different ending. Autism reeks havoc and Agassiz School mends and heals and loves and nurtures and teaches & makes us all better....
So if you can, please consider making a donation to:
Room #207 @ Agassiz School
2851 N. Seminary
Chicago, Illinois 60657
Checks can be made payable to Agassiz School Room # 207 & mailed to the above address.
Please reference Joe Myers on the check.
& the Autism Program @ Agassiz School needs donations for everything from 2 IPADS to Velcro.
Because of the expertise and love @ Agassiz School, Joe has become an academic star and almost sometimes, even a good citizen. Without Agassiz School, Joe's story would have a very different ending. Autism reeks havoc and Agassiz School mends and heals and loves and nurtures and teaches & makes us all better....
So if you can, please consider making a donation to:
Room #207 @ Agassiz School
2851 N. Seminary
Chicago, Illinois 60657
Checks can be made payable to Agassiz School Room # 207 & mailed to the above address.
Please reference Joe Myers on the check.
Bunnies et All Else
446a "Kate Myers, Let's wake up".
"Put my patch on, Kate Myers".
& we are awake.
& Joe's Daytranna patch is applied.
& Joe is dressed and ready for school.
& now it's 528a.
Yesterday Joe wet his pants @ school.
Yesterday Joe wet his pants on the school bus.
This is not like my Joe.
Maybe a bladder infection?
Maybe something?
Maybe nothing.
Tomorrow @ 12n Joe & I have an appointment @ the Illinois Advocate Child Development Center. Discuss, wonder, ask, answer and see you again in 90 days.
Nothing ventured, nothing gained.
Everything ventured, little gained.
Today Joe & his class are going to see a play @ The Victory Garden Theatre. It is cold and windy and the class is walking to the theatre.
Today I have to do most of yesterday's list plus today's list.
Joe's class needs fundraising. Joe's class needs everything from Glue Sticks to storage shelves. & our class cannot sell wrapping paper or magazine subscriptions attend a fancy dinner & so I sent an email to friends and family and asked for checks to be sent to Joe's classroom.
& now I feel embarrassed.
Why?
Bunnies. Joe has yellow bunny & pink bunny. Joe got theses bunnies in Brooklyn Bridge Park in 2004.
& The bunnies smell.
& The bunnies drive me crazy.
& Joe always needs to know exactly "where are my bunnies?".
& Joe says @ least 100 times a day "Kate Myers, kiss the bunnies" & then Joe thrusts the bunnies in my face. When I am @ my computer, in the kitchen, driving my car, talking on the phone, sitting, standing, in the bathroom, taking the trash..."Kate Myers, kiss the bunnies".
& the bunnies keep Joe & I up @ night. "Where is yellow bunny?" Where is pink bunny?" "Kate Myers, kiss the bunnies".
& If I refuse to kiss the bunnies, Joe starts with "Pinch the bunnies, Kate Myers".
& this is all day most every day Joe & I are together.
Literally, all day, most every day.
& the bunnies have been to school, water parks, doctors & most everywhere else Joe & I have been since Marty Markowitcz handed us the bunnies on Easter 2004, in Brooklyn Bridge Park.
& I am gaining weight.
& I am already over weight.
Fat.
& I take comfort in food.
& I am tired.
& I eat unhealthy food.
"Put my patch on, Kate Myers".
& we are awake.
& Joe's Daytranna patch is applied.
& Joe is dressed and ready for school.
& now it's 528a.
Yesterday Joe wet his pants @ school.
Yesterday Joe wet his pants on the school bus.
This is not like my Joe.
Maybe a bladder infection?
Maybe something?
Maybe nothing.
Tomorrow @ 12n Joe & I have an appointment @ the Illinois Advocate Child Development Center. Discuss, wonder, ask, answer and see you again in 90 days.
Nothing ventured, nothing gained.
Everything ventured, little gained.
Today Joe & his class are going to see a play @ The Victory Garden Theatre. It is cold and windy and the class is walking to the theatre.
Today I have to do most of yesterday's list plus today's list.
Joe's class needs fundraising. Joe's class needs everything from Glue Sticks to storage shelves. & our class cannot sell wrapping paper or magazine subscriptions attend a fancy dinner & so I sent an email to friends and family and asked for checks to be sent to Joe's classroom.
& now I feel embarrassed.
Why?
Bunnies. Joe has yellow bunny & pink bunny. Joe got theses bunnies in Brooklyn Bridge Park in 2004.
& The bunnies smell.
& The bunnies drive me crazy.
& Joe always needs to know exactly "where are my bunnies?".
& Joe says @ least 100 times a day "Kate Myers, kiss the bunnies" & then Joe thrusts the bunnies in my face. When I am @ my computer, in the kitchen, driving my car, talking on the phone, sitting, standing, in the bathroom, taking the trash..."Kate Myers, kiss the bunnies".
& the bunnies keep Joe & I up @ night. "Where is yellow bunny?" Where is pink bunny?" "Kate Myers, kiss the bunnies".
& If I refuse to kiss the bunnies, Joe starts with "Pinch the bunnies, Kate Myers".
& this is all day most every day Joe & I are together.
Literally, all day, most every day.
& the bunnies have been to school, water parks, doctors & most everywhere else Joe & I have been since Marty Markowitcz handed us the bunnies on Easter 2004, in Brooklyn Bridge Park.
& I am gaining weight.
& I am already over weight.
Fat.
& I take comfort in food.
& I am tired.
& I eat unhealthy food.
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