Wednesday, April 9, 2014

The End


Dear Joe,
 
You left to school this morning so excited for the Agassiz Book Fair.
 
You left for school with your book fair money in your pocket instead of an envelope.   You are clearly a guy who does not need to carry his book fair money in an envelope.  & You are right. Money is best placed in a pocket.
 
You left for school this morning so chaotic & confident & with a huge  sense of pride.  You run towards your bus with leaps & bounds & you greet all the kids & driver & I love you so much. 
 
You adore  Agassiz School.  You love Mr Lee & Mr Peet & all of "my adults".  You are the star of special ed @ Agassiz School. You know all the kids & all the kids know you!   You have friends.  You & Tony M have been best friends since January 6, 2011.   Occasionally you have announced "Tony is not my friend AND I WANT A DIVORCE" but you & Tony always find your way back to your friendship.  You have made friends in the General Ed.  You are frantic & bold & smart & clever.  
 
You have friends.
You help your classmates.
You share.
You are smart
You are in constant motion
 
You are unusual & wonderful & bold & strange &  you have Autism - PDD/NOS & ADHD & a profound anxiety disorder.
 
You are my guy & you worry all the time.  & honestly, you are right to worry.  Your life is hard & it is not your fault,   Joe, what has happened to you is not your fault. 
 
Autism - KAPOW!
ADHD - WHAMMY!
Anxiety Disorder - YOWZA
Dead Father - KNOCK DOWN
 
 On January 1,2010 you & I left Brooklyn   & we came to Chicago & we were together & scared & brave & we came without our Bill & you & I moved to a small apt & you had your 1st day @ Agassiz School & we were in motion.  New school, new doctors, new apartment & eventually friends & support & all sorts of changes - good & bad - & you & I  managed & kept moving.  & I love you so much.
 
 Bill stayed in Brooklyn & it has hard & lonely & necessary & 2010 was filled with all sorts of heart ache & adventure & trauma & bull shit that no child should have to endure & you did & you did so with a huge amount  of tantrums & crying & whining & dreadful behaviors & most beloved child - I  behaved the exact same way!
 
& We were together &  we kept moving forward & now, we are better  & I love you so much.
 
 As you were (literally) leaping off the school bus yesterday  you shouted  "Can you call me BILL PLEASE?"   No.  I cannot.  It is too hard.  I cannot call you Bill.   I cannot call you or say "Bill".   It is too hard & in my head I am pleading with you to never ask again...This is selfish & I am heartfully   sorry my child, but I cannot say 'Bill" or call you Bill.  It is too hard for me.
 
You are 11 1/2.
& you deserve your privacy & a huge amount of respect.
 
I started this journal /blog in the late winter of 2010.  
This is only my 2 cents.
 
& I love you so much.
 
Let's do better.  
 
Your father kept a journal for you & Bill's last entry said "I can not  wait to see how you turn out"  & Bill could not wait.  Bill could not wait.
 
I promise to wait.
 
Your Kate 

Saturday, April 5, 2014

Shame & Envy

Autism never fucking ends.
 
I see kids  - ordinary & typical  - & cannot get over the magnitude of my child's delays. 
I see kids - ordinary & typical - & I think how easy their life is
I see parents-ordinary & typical - & I think "I envy you"  
I see parents - ordinary & typical - & I wonder if they have any idea what it is like to spend all day every day trying to encourage your child to engage.
 
Joe's yelping & noise & profanity is making me  feel shame. 
& Shame is a new feeling for me.
 
I have trudged through so much bullshit & red tape & paper work & have not stepped away from1 battle for or regarding my child & almost no battles were lost or time wasted &  who knew  that I would be beaten down by yelping & swearing & constant noise.
 
We cannot go out into the community  yelping & swearing & constant noise.
We cannot.
 
The constant shouting profanity & shouting & yelping fray my nerves  & drain my hope & remind me I fail my child on a daily basis.
 
Today Joe went to Barnes & Noble with Alex the Saturday therapist & I went to Trader Joe's.  
 
Autism never fucking ends.
 
 
 
 
 

Monday, March 31, 2014

Not Kidding

Our most recent medication change has been a bloody hell -

We are 9 days into Quillivant - 5 very very bad days & after a dose increase, 4 good days with (mostly) appropriate behaviors & focus.

I need a haircut.
& Bourbon.

Saturday, March 29, 2014

Less IS More

Today Joe woke up  shouting with total confidence & happiness "My DAD has super powers"   "I know THIS because I saw my DAD's lightning bolts"
 
1. Joe rarely refers to his father as "Dad" - most always Bill
2. We are in serious need of less crazy - not more.
 
I am making a big effort not to over react & not take up too much time from our psych, social worker, 2 therapists & case manager - but how can I not?   :)
 
2nd day of the increased dose of Quillivant & so far so good.
 
Tonight Joe is sleeping @ his friend's house.   This is 40% Joe & 120% the R family that has so opened their hearts & home to my guy & my big ideas & my guy's chaos etc....
 
Tonight while Joe is @ the R house, I am lucky enough to have an evening with a good guy.

Friday, March 28, 2014

Do's & Don'ts

Friday - Joe & I are both home.  Joe's Quillivant dose is up 2mg's & we are both trying very hard to maintain our collective cool.
 
This morning is slightly better - some  improvement.   May be the ADHD medication may be Joe is exhausted & may be no reason @ all.
 
Yesterday - after a full & chaotic day @ school -  Joe worked on his 5th grade science project, wrote in his journal, advanced 1 level on Raz Kids (On line reading comprehension program) & raged for 35 minutes.   Rage included, but not limited to throwing a glass of water, biting my left arm until he was literally hanging off my left arm, spitting, screaming, name calling & finally ended when I managed to get Joe his evening dose of Catapris & Celexa.
 
& Once Joe settled into his bed, we had a long & coherent & interesting & connected conversation.   A connected & fully coherent conversation is not usual.  Joe's classroom is chaotic.  Joe asked if I could work in 307 to help J.  "J is a big giant mess Kate"   Joe is concerned for the 3 kids graduating from his class "But will I EVER see N after Jun 13th?"  Joe told me he loved his speech teacher Miss H and thought Mr F had too long of a daily break +++++
 
Special Ed  Autism classroom is a contradiction   -  A SPED Classroom should be calm & orderly but it is not possible.  
 
Fact:  Autism kids need order & calm & patience & total organization.
Fact:  Autism  destroy order & calm & deplete patience & organization.
 
 
 
 
DO – EVERY DAY
 
Read 2 books
Make your own bed
Clean your own room
Quite voice
Brush your teeth
Take a bath
Clean your own bottom
Take your medicine
Do homework
Go for a walk
Listen
Use correct names
 
 
DO NOT – NOT EVER
No Swearing
No pounding
No loud voices
No calling names
No Hitting
No Biting
No Spitting
Do not say “Lie” “Liar”

Thursday, March 27, 2014

Not Joe's Fault

Joe's medication change has created total chaos - constant motions  & noise & moderate aggression & short tempers and depleted
 
ADHD is no not nothing.  
Joe's ADHD is bigger determinate to Joe than his autism.
ADHD & Autism combined are a mighty force.
ADHD debilitates the child - the family - the classroom.
 
No  focus 
No attention
Very little impulse control
Constant testing of limits & boundaries & name calling & on & on & on...
 
& If  Joe is not @  school - he is @ my side - pushing books & games in my face & shouting & screamimg  & I know this is exhausting for my Joe as he is asleep by 645p since we stopped the Daytranna.
 
Without the support of an effective ADHD medication, the entire time my Son is not sleeping is  - we are catts chasing our tails.   Waking up at before 5a & shouting & screaming & using the IPAD & DS & the TV & laptop & "GET ME BREAKFAST" & "NOOOOOOOOOOOOOOOOOO  I WANT TO WEAR MY DONKEY KONG SHIRT"  & constant chat and chatter @ the loudest decibel imaginable. & banging on tables & windows &  On & On & On.
 
& I am taking XANAX & trying to keep me & Joe & our house organized & moving forward.
 
We are increasing the Quillivant dose by 2mg's & will wait 7 days.
 
Within the past 8 days we have had 2 formal @ home observations by Hope Institute for  Children  & Families.   The Hope Institute for Children & Families will be @ Joe's school next Tuesday & Wednesday.   & then we wait for the data to be complied & studied & then we discuss & discuss & discuss.
  
& We are on lock down - no sleep overs or play dates or errands. 
 
& This is not Joe's fault & for the past 7 days,  I am constantly reminding myself  - this is not Joe's fault.

Friday, March 21, 2014

If Only...

Today I picked up the much anticipated Quillivant XR prescription -paid in full by the Pfizer Care Program.  Changing Joe's ADHD medication is a huge.
 
Joe has never successfully used an XR (Extended Release) ADHD medication.  Joe has been using the Daytranna patch for 6.5 years. For Joe, the patch is effective for less than 5 hours.    If Quillivant XR is fully effective, Joe should have 12 good / better hours a day.
 
& @ home, we are on a roller Coaster of violence & almost constant screaming & chaos & movement & @ school, Joe is doing swell.  
 
Last night Joe raged @ me for almost 50 minutes.   I am so sick & tired by autism  that I cannot type last nights details. 
 
& tonight Joe's friend BR is sleeping over & I hear the most typical & joyful shouts & laughter coming from my Joe's room....
 
If Only....

Bitch

All Day -
Most Days -
I am autism's main bitch.

Saturday, March 15, 2014

by Ellen Notbohm "10 Things Every Child with Autism Wishes You Knew"

1. I am a child.

My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I meet you, but you’re more than just that, aren’t you?
As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, why try?

2. My senses are out of sync.

This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me.
My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.
And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.

3. Distinguish between won’t (I choose not to) and can’t (I am not able to).

It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%$&*.” Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.

4. I’m a concrete thinker. I interpret language literally.

You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.”
Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.

5. Listen to all the ways I’m trying to communicate.

It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.
Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Picture this! I’m visually oriented.

Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn.
Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.
I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.

7. Focus and build on what I can do rather than what I can’t do.

Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.

8. Help me with social interactions.

It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”

9. Identify what triggers my meltdowns.

Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A pattern may emerge.
Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me. My behavior may have a physical cause. Food allergies and sensitivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.

10. Love me unconditionally.

Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.
Three words we both need to live by: Patience. Patience. Patience.
View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?
I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.

Thursday, March 13, 2014

Dentist

Joe "Can we order pizza?
Me "No"
Joe "Why Kate Myers WHY?"
Me "Once a week we order pizza. We already ordered pizza this week"
Joe "What day next week can we order pizza"
Me "Saturday"
Joe "OK Order 10

Joe has been prescribed a new ADHD medication & our insurance (Medicaid) will not pay & Me & Joe & Joe's prescribing psyche & Joe's neurologist have been through a dozen medication options & phone calls & faxes & Fed Ex packets & to no avail.  & this is not the 1st time me & Joe & Joe's prescribing psyche & Joe's neurologist have gone 50 rounds with Medicaid & sometimes we win & sometimes we loose.
 
Medicaid or as folks in Chicago call it "Public Aid".
 
& Pfizer to the rescue.
Pfizer Cares program does indeed care.
14 phone calls.
19 faxes
1 Fed Ex
& Voila!
In approximately 2 - 3 weeks, we will receive a Pfizer Cares Card and Joe's Quillivant XR will be @ no charge to us.  
 
Good.   Great!  Wonderful!    In 2 -3 weeks Joe will start Quillivant XR.
Bad.   2 - 3 weeks without support of any ADHD medication.
 
Joe's ADHD is much more severe than Joe's autism.   & the ADHD creates constant - constant motion & noise & chaos & aggression & screaming & mess & on & on & on....
 
2 - 3 weeks we may or may not have a new & improved ADHD medication.
 
2 days ago Joe had a dentist appointment.  Ummmm.....his 2nd & Joe is 11.   & I was expecting the worse & it was (for us - in our upside down / square peg world) a giant success.   1st.   I was beyond nervous - I was scared.   2. M.M. to our rescue.  M gave up her day & met me & Joe @ the dentist office & was patient & held the coats & said all the right things & help to keep the peace. The literal peace.   The waiting room was the hardest part -Dr. Lassman has a crowded waiting room filled up with folks paying cash for their dental work on a block in Humboldt Park that has not yet been made shiny by gentrification.  Joe was still for less than 90 seconds.  The office was @ last 75 degrees and jammed pack.    Joe started pacing and touching & then pounding the walls & I started to coral my child & hoping the glass was shatter proof...& Joe was chanting  & loud "BUT I CAN'T MAKE A GOOD CHOICE"....then by the grace of Dr Lassman, Joe's name was called & Dr Lassman was calm & Joe was receptive & Joe announced " I am making a good choice" and got into the dental chair.  & no signs od decay!      & M.M. Stood by our side & I could not have done it alone.
 
I am a mother who cannot take her child to the dentist without help.
 
Most every day is an exercise in humility.  

Saturday, March 8, 2014

Cluster &^%K

The autism program @ my Joe's school is loosing it's foundation.  Largely because CPS has fucked all the Special Ed kids by eliminating  specialized classrooms (i.e Autism classrooms) for kids that are not likely to succeed in a general education / classroom.
 
Autism is not CP / MR / ED & on & on & on.   Autism kids need an autism program.  Not a special ed CPS Cluster Program.   
 
A CPS employee - someone working @ CPS head quarters replied "There really isn't a list of special ed  programs..."   When I asked the CPS employee sitting in his office on Clark Street  - to give me list of SPED program within CPS.  
 
No detailed list of SPED programs within CPS
No instructions on how to transfer a student.
 
So I think about moving to the North Shore - North Shore Special Ed Co-Operative.  Less than 20 miles north of my current address.  A Special Ed Co-Operative that includes 10 - 15 of Chicago's most affluent suburbs with an amazing & comprehensive  & inclusive SPED program.   Live in 1 of the communities within the North Shore Special Ed Co- Operative  & have access to all the services & support & classrooms in the NSSED Co-Operative.  & I do not want to live on the North Shore.  I don't. 
 
I like a city. 
I like this city.
 
Selfish me.
 
Joe has verbal language &  often there are conversations that come alarmingly close to ordinary & less  often there are seemingly disconnected   shouts  that scare the hell out of me.   The content doesn't scare me - but the disconnect scares the hell out of me. 
 
Joe needs so much more than CPS can provide. CPS is a piece - a component of getting Joe ready for the world / the community & most urgently - independent living.   & I am failing Joe & not getting Joe the services he needs / deserves.
 
I have been exercising.
 
I have been working (from home)
 
I have been leaving my house most everyday.

Thursday, March 6, 2014

You Are Not Special - You Are Sort of a Self Involved Jerk!

"Special Ed"
Perfect Example of an Oxymoron
 
People need to know - our kids are not special.
 
An Autism mom / FB friend of mine posted photos  of her broken nose, torn up, bruised, scratched, bloodies arms & legs & black eyes.   Her 10 year old son with autism has been beating the fucking hell out of her all week  - the child is hard & difficult & mood & non verbal & trapped & his school says "he is too much...he has to be picked up every day by 1p" & this woman picks up her son every day @ 1p & has the shit knocked out of her until 830p when her child goes to sleep.  This family is educated, caring, intact  & affluent & still, there is no help for their child.
 
Not the fault of the child.
Not the fault of the family.
 
& no help.
None.
 
Imagine being  so limited in your ability to communicate that all you can do is beat the shit out of the person that loves you the most. Imagine being the person who is loved the most & going to the ER & being asked "Who did this to you?"
 
"My child has special needs"
 
& It's bullshit - our children  / my child / no child is "special".
 
" Hey  - your kid is not special"   My kid is not special.
 
Our kids have to clean their own asses tie their own shoes, wait in line, go to school, keep their heads & emotions together & do everything else every person on this planet has to do ever single day. 
 
Not special.
 
No excuses.
Joe is 11.5
No excuses.
 
Last week end Joe had a friend sleep over - B.R.    Not our first sleepover & B.R. is an even tempered 5th grader with minor learning delays.   B.R. is (mostly) in control of his emotions & Saturday was swell & early Sunday morning was heading towards shaky so I interfered and directed a Dr Seusse project.  B.R. & I took turns reading pages from "Oh, The Places You'll Go" while Joe created scenes via Lego's & Magna Blocks.   & as we headed towards the 1230n pick up by B.R.'s parents, the boys bundled up & headed to the courtyard & all was good & I was lurking @ the kitchen window & then KABOOM.  "Fucking Bitch"  'Goddam Fucking Bitch" & on & on & on....Joe was furious & unwinding & cold & pissed off.   B.R. - in the spirit of a snow fight - with no malice - threw a snow ball @ Joe & got Joe right in the face.   & To Joe's credit, Joe was able to control his impulses enough to stop himself  from hitting & to Joe's determent, he could not control his impulses enough to keep his temper in control &  what was coming out of my Joe's moth sounded the same as if 3 teamsters had lost all of their money @ the track.  As if my Joe was instigating a riot @ a prison.  The rage & language & lack of self control  scares the hell out of me.   Within 6 minutes, Joe was able to calm himself down & scream a scathing apology @ B.R.  
 
& B.R. behaved like an ordinary 10 yr old & was surprised & smirky & when it was over - it was over & Joe & B.R. went back to games in the snow.
 
& I felt shame.
 
& It breaks my heart.
 
Yesterday when Joe got off the bus, Joe was in tears. Not tantruming, crying.  Joe spent a large portion of his school day taking a standardized test  - with a huge amount of support & consideration - & Joe said he had failed the test.
 
Last night Joe screamed "Fucking Bitch for 21 minutes"  When Joe calmed himself down, his voice was inaudible.   Joe has a WillU &  a Wii. The WiiU is perpetual set up on the TV in Joe's room. The Wii  has been stored in a closet for @ least 22 months & suddenly the Wii was all Joe could think about.  Nothing else.  "Help me with my Wii"  Over & over & over in a screeching loud & panicked voice. I did & a cable / connector is missing & or the TV does not have the appropriate port & does not work....
 
 
& life happens & Joe has got to be able to act & react with appropriate responses.
 
 
We are changing ADHD medications
We are waiting to start round #2 of a 30 week / 12 hour a week  @ home behavior modification plan / program.
We are waiting for warmer weather
We are waiting to wear our sneakers & leave our apt. without gloves, boots, scarves & hats.
 
We are waiting.

Tuesday, February 25, 2014

Warts Et All...

I have a friend in Benzie County Jail - somewhere in the Upper Peninsula of Michigan.   My friend has been in jail since early September & her trial will start this April . My friend is pleading guilty.  My friend is guilty.
My friend is in jail  because my friend committed a hateful & atrocious act / crime.  
My friend tried to kill herself  &  her 13 yr old daughter.  
My friend tried to kill herself   & her 13 yr old daughter who is autistic & violent +++++
 
My friend's daughter is violent & beat the shit out of her mother 30 x a day. 
& my friend cracked & came to the conclusion the only way out of a nightmare  was a badly planned murder suicide.
 
& my friend is in jail & on her way to prison & my friend's children are without their mother.   A tragedy.   A huge & heart breaking tragedy. 
 
 A good mother who cracked into ten million pieces.
 
& so I think about my friend & jail & cracking & autism & children & how hard life  can kick an ass. 
 
& I write long letters to my friend.
Long letters to my friend in jail.
 
I did not ever imagine having a friend in jail.
 
I did not ever imagine having a child with autism.
 
Three nights ago my child with autism had his very 1st sleep over @ his friend's BR's house.   & my child was amazing & wonderful & brave & navigated a night away from home with confidence & appropriate & easy going behavior / attitude.
 
Yesterday Joe led the social skills group @ his school. Joe was responsible to ask a question of each member of the group (4 members) ask a question - listen to the response & ask a follow up question.  
 
This morning the last remnants of Joe's wart fell off onto the kitchen floor

Wednesday, February 19, 2014

Problem Solver

I am back to exercising @ Core Fitness.  I need the exercise. I really need the distraction.  I need to be physically tired.
 
Reminder to me:  If I want Joe to do better, I have to do better.
I have to be stronger & calmer & smarter.
 
I have to get my child ready for a world  that has little interest in accepting m child.
 

My son’s issues – diagnosis – behaviors are not his fault.     There is also no evidence that my sons issues – diagnosis – behaviors are my fault
 Autism will twist you 10 different ways every 60 seconds. 


All day every day I search for solutions.
Solutions to problems both  real & imagined.
 
What if I have to change a tire on my car?
What if Joe never stops swearing?
What if Agassiz closes their Special Ed Program?
What if I forget to file taxes?
What if my brother dies?
What if BDB decides not to love me?
What if BDB gets a divorce?
What if my mother dies?
What if Joe breaks a leg?
What if I am in menopause?
What if I am not in menopause?
What if Bill is really not dead?
Should I sell my car?
Should Joe's medications be adjusted?
& on & on & on....
 
 
& so I am distracted all day every day  conjuring up solutions to dozens & dozens of problems.
 
& it is exhausting & distracting & worrisome.
 
& I am a magnificent problem solver.
 
Autism & ADHD & Seizures & violence & aggression
 
We will soon start another round of 3 x a week home therapy & 3 x a week for behavior modification therapy @ the  Pediatric Development Center.  
 
Joe is 11.5    1/2 way through 5th grade & so much work & growth is needed...

Monday, February 10, 2014

Cannot Care

I don't care about the Olympics or the Beatles 50th Anniversary or that bike thefts are up 5% in Chicago.  I don't care about the minimum wage & I really don't care what causes autism.
 
Today my day started @ 430am.  "Kate Myers, what time is it?"    @  the 1st shout of my name, I wake up  & apply a 30MG Daytranna patch to Joe's bottom  tell my Joe we do not get out of bed until 6a.  Joe is quiet for nearly 30 seconds before he screams again "KATE MYERS, WHAT TIME IS IT?" .  &  on & on for  every 90 seconds until 6a.  6a  - our agreed upon time to get out of bed & start our day.
 
Yes - Joe has a clock next to his bed as well as a watch & a IPOD.  When I tell Joe to stop shouting & asking me the time he replies "But Kate Myers YOU ARE THE TIME KEEPER".
 
6a.  Week day,  week end,  holiday, school day, 1/2 day - any day.  Everyday. 6a.
 
"WAKE UP KATE MYERS".   The volume & frequency is the exact same if Joe is in his room or my room.  "WAKE UP KATE MYERS"
 
Sometimes Joe substitutes "SIR" for "KATE MYERS".
 
& it is like rapid gunfire until the school bus arrives  @ 735a that day or 1 day or 2 days or 10 days later.
 
My mornings with my Joe are assaulting & jarring & jagged  exhausting.
 
By 715a Joe's Daytranna starts to take effect & our morning becomes the slightest bit productive. Check list for book bag & lunch & boots & who will Joe want to sit next to on the bus & what will I do while Joe is at school & will Mr Lee take Joe to gen ed Math & will S.  hit @ break time & will the kids go outside to recess or have  free time indoors  &  mostly ordinary chat - ordinary for me & my Joe.
 
 
Today. Joe is @ school & I have to exercise, go to the Laundromat, vacuum, 2 hours of work, shower, make  4 appointments for Joe, follow up with a new  social skills workshop for Joe & pick Joe & N. up from school @ 245p.  N. is our friend whom comes to our house 1 day a week after school. N. is starting high  school next year & my Joe finds N's graduation very very exciting.
 
It is 1 degree in Chicago.
The washing machines in my building are not working.
My trash is piling up on the back porch
My apt.is cold
& I am tired
& I am lonely

Sunday, February 9, 2014

Cursed

No swearing.  None. Done.  No swearing.
 
I swear / swore & this has taught m child to swear & Joe's swearing must stop.  & Joe's swearing is not stopping & I am concerned. 
 
My Joe has autism & ADHD & swear words seem to be in perpetual play.  When Joe was 7 & 8 & he would say "....what the fucking hell ..." & "...THAT is a big fucked up mess..." it was for reaction - even when admonishing Joe, it was hard not to smile.  & verbal language was new & any verbal language was thrilling & honestly, there were so many other behaviors that were so much more destructive & daunting that I did not care about the swearing.  But now Joe is 11.5 and it is not cute or disarming for Joe to swear.   Joe's swearing is aggressive &  cold & assaulting & there are rules in the community.
 
Basic rules of / in the community - "we don't swear" may be #26 or #27  on the list - but it is on the list!  No swearing.  Joe cannot call the guy @  7-11 who pushes ahead of us in line a "jack ass" or "ass hole".  Can't do it.  Joe does not look like a little kid with disabilities, Joe looks an ordinary kid who is soon to be an adolescent.  
 
No more swearing.   
 
Impulse control - more accurately, Lack of impulse control remains our headline.
 
Joe is doing great in general ed 5th grade  math @ Agassiz School.  Joe sits with the group & raises his hand for both questions & answers.  Joe's "adult" ("Me Lee is my most favorite adult") is a few seats away keeping an eye on my Joe & ready to offer support if needed.

A few days ago, Joe was playing on our sidewalk & a older kid from Joe's school walks and & says to his friend (7th or 8th graders) "Hey - that kid stutters" & my Joe - as cool & as confident & self assured as can be says "I am that kid - RACE ME" And all three guys took off in a mad dash of running & fun. Of course Joe's verbal language is too loud & abrupt with movements to match but thrilling to see Joe acknowledge his disability in a cool and calm manner
 
For approximately 47 days we will have no  @ home support services.

Wednesday, January 29, 2014

Why I Am Awake All Night Long

The washing machine in my apt. building is not working.   It is -3 degrees in Chicago.  My best friend moved to Portland.  I am getting fat. I am tired. I am in debt.  My child has  autism.  My child has ADHD. My family is fractured beyond repair.  My father has been dead for 39 years.   CPS has had 4 snow days this year.  My other friend's daughter used the word / label "Autistic" in a derogatory fashion".   My clothes are ragged.  My boots are from Walgreen's.  I rarely exercise.  I am alone. My child is difficult.  My child hits / bites / scratches me.  Bill crosses my mind too too much. Flashes of lies & anger & love & fun & deceit & stupidity. I have had no face to face grown up contact since early Saturday morning. It is now early Wednesday morning.  I am lonely.  I am too easily frustrated. I take Xanax.  I rent my apt.  Lease renewal is almost always an issue. Tension. Pressure.  Parenting.  Siblings.  My cousin.  Boyfriend. Boyfriend's wife (estranged). Exercise.    Honesty.  Appointments.  Ignorance.  My ignorance.
Go away.  Get Away.  Can I drive 8 hours to the Smokey Mountains alone with Joe? Gaitlenberg TN.  Graceland.  Taxes.  Fun. I need some fun.  Choices - nap or work out?
Appointments - go or cancel?
Should I move to Portage Park?
Should I move to Humboldt Park?
What about the NYC Co-Op?
I do not want to go to a Laundromat.  
What if I get sick?  What if I get sick for 2 days & can't take care of Joe?
What if I get really sick & die & Joe goes to social services?
What if I have a heart attack while I am sleeping and Joe wakes up & I am dead?  What if Joe never gets himself organized & ready for an ordinary life. 
What if Joe never stops hitting me?   What if Joe hits me so hard I get a brain injury?  What if Joe rages on a stranger & the police are called & Joe goes to jail?  What if I have done/ am doing everything wrong? What if my idea / plan / philosophy of getting Joe as independent as possible is bullshit?  What if I am the cause of Joe's anxiety & stress?  What if I am the cause of Joe's autism & ADHD & social & emotional delays?  What if Bill was right & I am a selfish bitch?  "I gave you every  chance to be a good wife"  1.1.10   Said Bill Myers to me as Joe & I were in a taxi on our way to LaGuardia on our way to move to Chicago & leave Bill & NYC. 
I am constipated.  Menopause.
I spilled Joe's Celexa and now we are 4 days short of a refill. 
& I have insomnia

Monday, January 27, 2014

Snow Day

 
 
Yesterday Joe flipped.
Yesterday Joe raged.
 
 
& we are back to behavior charts, tracking ever swear word & name calling  & every  mood & banging &  every  action.
 
Banging.  A child in Joe's class room bangs. Bangs his fist to accompany ever word & ever action. & Joe thinks the constant banging is terrific.  Imagine clapping syllables but with fists & a great deal of aggression & each bang is loud & aggressive & the noise is jarring & the banging scares me.
 
& the tension builds.
& the noise builds on the tension.
& Joe gets manic
& the name calling starts
& the swearing starts
& then KABOOM
 
& Snow day today
 
 
& I am tired & scratched & bitten & bruised & sore & today, all I can manage is to go through the motions...
 
There is more but I am sick of myself & autism & noise.
 
 

Monday, January 20, 2014

My Father

My father has been dead 39 years & 1 day.
My mother has been a widow 39 years & 1 day.
 
My father died on a Sunday afternoon @ Little Company of Mary Hospital.
I believe my father died of a pulmonary aneurysms & after 39 years even a straight forward fact like cause of death becomes cloudy.
 
6 children left.
1  wife left.
 
My mother - I am not certain, but it seems  her life has been defined by loss.   My mother's parents were dead  before she was 9.  My mother's husband was dead before she was 35.
 
Brutal
 
My life mimics my mother's & her mother's.
My mother's mother - my maternal grandmother was a widow before she was 40. My mother was a widow before she was 36.  I was a widow before I was 46.

Saturday, January 18, 2014

More of the Same...

The Illinois State Board of Education is auditing the Special Ed Program @ my Joe's school.
The ISBE is preaching inclusion  - & inclusion with proper supports for students (both the general ed & special ed students )  & staff is an ideal model / program for my Joe. 
But inclusion without support & training & planning & great care & concern is a giant cluster fuck. 
& I am both concerned & afraid.
 
Joe has been doing OK -OK for a child with PDD/NOS - & absolutely rotten for a child without PDD/NOS.
 
Joe swears.
I hate the swearing.
I hate the shouting.
 
Joe rages.
I hate the violence.
I hate the anger.
 
Tonight Joe's friend IH is sleeping over @ our house.  Tonight my friend BD will not be sleeping over.
 
When Joe wants to make a strong verbal point, Joe starts a sentence with "I solemnly swear..."


I am overwhelmed & alone & tired.
I am sick of myself & autism & big ideas & my  emotions & Joe's emotions.
 
& I need to make decisions & I can't & I am having trouble.
 
My lease is up-do I move?
Joe's class room is mediocre @ best - do we change programs?
Is Joe ready for inclusion?
& on & on & on...
There is so much more but I am sick of myself & feel rotten
 

Friday, January 10, 2014

T R U T H


I do not do my best.  I do what I can & I wonder if that really means, I do what I want. 
 
I have spent too much time wondering what to do next  & by next I mean what to do / what I should be doing for my Joe.
 
Yesterday Joe had a serious melt down / rage @ his school - @ his Teacher Miss R.  Joe bit Miss R  called her a "Fucking Bitch".  
 
I am close to conceding.
 
Score as of January 10,2014
 Autism                  234568,000.
Myers Family         7
 
 
The day before yesterday  Joe's school & I were discussing inclusion.   Yesterday there was no discussion.
 
& I am embarrassed.
Not embarrassed by my child or autism but embarrassed of my optimism.

Saturday, December 28, 2013

Dream A Little Dream.

A reoccurring dream & I know other people's dreams are boring & still I am going to type about my dream.

There is a big party - an event - me & my Joe are excited & dressed up & we arrive & we hear the fun & look through the windows at our friends & family & the door is closed & on our side of the door there is no knob.

We cannot get in.
We were invited.
We made plans.
We arrived.
& still we could not get inside.
& me & my Joe leave.

The End

Thursday, December 26, 2013

Call This Christmas OVER

It's Christmas Night & our house is quiet & Joe is content & in his bath.  Our day was anchored by presents and a breakfast @ my brother & sister in law's.
& Christmas Eve  was easy & anchored by Joe spending a few hours alone with his uncle.

We spent the afternoon & early evening  of Christmas 2013 building Lego spaceships & fire trucks & cities & played 20 rounds of Sorry & 6 rounds of Monopoly.

Christmas 2013.

Lonely.
Alone.

There were holiday dinners & parties & friends & loved one's called before & after the parties & wished me & Joe well & told us of their holiday but no one invited us to their  dinner or  party & to paraphrase Dr.Seusse from The Sneetches  - Fuck you - you snooty old smarties, we would not have gone to your holiday party! 


Holidays are cause to gather & a gathering creates a memory & a memory gives us common ground & common ground  gives us a foundation & both a sense of belonging & reason to belong.  

Me & Joe.

12 days left of Christmas vacation.

Friday, December 20, 2013

I HATE AUTISM

Joe is a high flyer!  Joe is soaring to high heights & is a happy & gutsy & confident boy & ever day of his life - everyday forever - forever!  Autism is going to fuck with my boy.

Fuck you autism & the ongoing pain & damage & destruction & heart ache & violence & the constant robbing my boy of so so much.

There is not one aspect of my child's life & of my life that is not hatefully  tattooed by autism.

Joe wants to be a cub scout!  Great!  But finding a troop leader that is willing to have a scout with moderate autism  - so far - has not been possible.  I have become a stalker on the Boy Scouts of America troop locator website - have extended my search as far as Hoffman Estates & nothing.
Joe wants  / like to ice skate but the noise of the blade on the ice incites tantrums & rage in my child.  & on & on & on it goes.


I am not patient -
For the most part of my day / week / month/ year,  my only concern is for my child
I am curt.
& I will help you because I know exactly what it is like to be in almost constant need of support & assistance.

Joe: "Kate Myers, you are my whole fucking planet!"
So loving & heart breaking.....


Today is the last day of school for 2013.
& Joe is thrilled - over the moon & I am literally scared.

Monday, December 16, 2013

Gone

I have lost my confidence
I have lost my courage
I have lost my belief that Joe will go out into the world & have some sort of independent life.
 
I have lost it.
All of it.
 
Joe has been a superstar for the past few months & 3 days Joe raged @ me & we have been in a 72 hour downward spiral.
 
I worry.
I worry I am loosing my mind.  Literally loosing my mind.
I worry Joe is going to hurt me - really hurt me & Joe will be alone.
I worry I will never feel peace.
& I worry about all the ordinary bullshit
& I worry about my extraordinary circumsances
I worry about my child.
& my worry has infected my child & Joe's worry & anxiety has increased dramatically in the past few weeks.
 
 & Joe worries about his classmates  & Joe worries about the weather & Joe worries about the Dominos delivery guy & a huge source of worry is Santa.  "Will Santa scare me when he comes in my window?"     & Joe is right on about Santa!  The idea of Santa is some seriously scary shit. & yes - I have explained & no, there is no relief for my child & yes we medicate & sill our struggle is gigantic.
 
I hate fucking autism. Autism has robbed my child & me & so many others of anything ordinary. & of possibilities & options & plans.
 
Joe's classroom is chaotic & I continue to believe it is the best in the city & I am no longer certain it is good enough for my Joe.
 
Yes we go sledding & on play dates & to the movies & for long walks & occasionally we see friends & honestly, Joe is doing great - amazing  ha Joe has friends & is independent enough to go his friend's house on his own & within the autism community - this is a big fat WOW!   WOW!  Joe makes his own lunch & has friends & spends part of his day within the general ed 5th grade & talks about high school & this is so much &WOW ... but none of this is organic or ordinary.  It is all orchestrated & coerced & begged & taken & It is  so fucking hard & exhausting & lonely.   I am so grateful & It is not enough. Not good enough.  No good enough for my child.
 
I love my son.
& my son deserves / needs better.
 

Thursday, December 5, 2013

Say CHEESE!

Picture Day @ Agassiz School & Joe is over the moon!  "But I need a hair cut"   "What are my BEST shoes?"  & last week end Joe wanted to be sure his dress shirt & bow tie were in top notch condition & ready for the 307 class picture.
 
Picture Day & Spelling Bee's = White button down with silver & black diamond pattern bow tie.
 
Photo is last year's - today's photo is (almost) identical.
Every Picture Day is similar
In 2011 Joe substituted a jaunty tartan plaid bow tie for the silver & black diamond pattern bow tie..
 
 
 
 
 
& Yesterday Joe had a melt down / tantrum / rage....1st in a very long while - July was the last...
FUCK! 
 & why must I count the days between melt downs / tantrums / rages?  Keeping track is not good for me.
 

Yesterday's tantrum was 8 minutes & Joe backed out of the tantrum & calmed himself down on his own. Joe accepted the consequence of the tantrum & a (sort of ) calm evening followed.

Monday, December 2, 2013

Inclusion

I am happy.
 
Joe is happy.
 
We are happy & for the moment, we are @ ease. & this is an unusual feeling for me & my boy.
 
I was very anxious & tense & nervous for the Thanksgiving Break & me & Joe got through it as easy as "1 2 3".
 
Autism, ADHD, Anxiety Disorder ++++ & we are good & happy.
 
Joe  got off the school bus shouting with joy!  "I am student of the month" & I said we were going to walk to the bank, the bagel shop & Walgreens & Joe could pick out a treat to celebrate "Student of the Month".  & on our walk Joe was chatty & asked appropriate & connected & relevant questions & was patient & steady @ the bank & ordered & handed over the money & counted the change @ the bagel shop & answered the pharmacists questions @ the Walgreens "Can I have your address?"  "What is your date of birth?"
 
& last year a day like today would not have happened. Joe would have raged without mercy @ me to avoid going anywhere without prompting.  & would have screamed & tantrumed & spit & swore @ at every errand.   I would have crumbled.
 
" for Joe to be able to be in the community, making appropriate choices & to be moderately independent"  When asked by teachers & staff & MD's & shrinks & therapists & aides what I want for my child I say "for Joe to be  able to be in the community, making appropriate choices & to be moderately independent"
& it is my mantra & it is my goal & it is what drives   me& motivates me to keep my  Joe moving forward.
 
Me & Joe are lucky.
We have found friends in families with general ed kids that are willing play dates & sleep over participants & running buddies @ the park & zoo & tag a longs on other events & field rips &  see the benefit of inclusion for their typical kids as well as the benefits for my A typical kid.
 
& Joe is modeling better / stronger / more appropriate behaviors because of his Gen Ed friends.
 
Inclusion. 
Our very best chance.

Thursday, November 28, 2013

Tired.

Bill & I married the day after Thanksgiving. 
In New York City.
1990.
 
& every Thanksgiving is tied up in what was /  might have been a wedding anniversary.
 
Most Thanksgivings Bill & I spent together in NYC - Umberto's in Little Italy, North by NorthWest on the Upper West Side, Slades in Brooklyn Heights.  or a train trip to Philadelphia or a driving trip to Chesapeake Bay (St. Michael's MD)  or to Providence...but always  @  a bar - corner stools.  Beers early in the day, vodka straight as the holiday wore on & it was mostly fun. & there was always music & occasionally a big  giant fight. 
We belonged.
 
 
Once during our marriage we spent a Thanksgiving with Bill's family in Jonesboro & once we spent a Thanksgiving with my aunt & uncle (my aunt's last) in Ann Arbor.
 
Joe's 2nd Thanksgiving, my mother & sister came to Brooklyn.  I don't know why.  Visiting family was not usual.
 
Alone.
 
Bill preferred to be alone most of the time & certainly on holidays.  Not especially alone with me, but alone.
 
& with just a little bit of luck on my side, this Thanksgiving can be over in just over 4 hours.
 
Bill's last Thanksgiving was in my apt in Chicago.  2 days before the hospital bed arrived  10 days before Bill  died.  Bill & Joe played CandyLand most of the day & my friend Mary brought food & Christmas decorations.
 
& now every Thanksgiving is wrapped up in a well imagined wedding anniversary & Bill's death.
 
My family is broken.  For generations, my family has been broken.
& holidays are strained.  I think death has ripped us all apart.  Our grand parents, our father, great aunts & great uncles, our aunt...so much loss & we can't seem to recover. 
 
Christmas 2010 was the last family holiday that me & Joe attended.  I was 20 days after Bill died & I could no stop crying & Joe was perpetually pulling on his penis & there was no sausage in the stuffing & we left.  I couldn't  take the small talk  Later in the afternoon, moderate lake effect snow storm, middle of Christmas dinner & Joe & I left.
 
Last Christmas we were both invited & welcome to my brother's for Christmas day but we were in the hospital & honestly,  being in the hospital was a giant relief.
 
Today.
Thanksgiving 2013
Joe & I baked chocolate breakfast rolls & made turkeys out of Oreo's and licorice (feathers) & went for a jaunty walk & went to the movies & played 3D Mario Party 2 players.  I like to be Princess Peach, Joe likes to be Mario.  I am awful @ Wii/WiiU games.  Joe is spectacular @ Wii/WillU games.   2 people waling around the town is not a family walking around the town,  2 people going to the movies on Thanksgiving is not a family outing.  2 people going to the movies on Thanksgiving is 2 lonely guys trying to get through the day.
 
Joe needs a family.
I need a family.
 
Belonging.  A sense of belonging.  I want to belong.  I want Joe to belong.
 
I am tired.
 
I am tired of being alone.
 
Tomorrow me & Joe are going to the circus.  The Big Top!  Barnum & Bailey's 3 Ring Circus @ the United Center.  1130a & then we are meeting classmates of Joe's @ Pump It up @ 130p & then Joe is having a friend sleep over...
 
& I am really tired
& I am  really tired of being alone.
 

Tuesday, October 29, 2013

I know dead is dead

 
& Still I am resisting the urge to call the Ruby Room & make an appt. with a Medium. I have been to the Ruby Room. Summer of 2012 was my first visit. & it is in my head, because the Medium told me! That Bill is not @ rest. The news did not especially disturb or surprise me. Bill was not a person who was @ peace or content in life so status check says - unchanged.
More than usual, Bill is on my mind.
Bill is on my mind.
Time passes & memories change & a terrible memory becomes less terrible & a pleasant memory becomes an amazing memory.
I feel Bill every where & have been dreaming he is not dead - not romantic day dreaming of my life with Bill, but seeing Bill. Loosing track of what I am doing & reminding myself to buy beer @ the grocery store. & Bill has been a big part of Joe's conversations & questions for the past few days. I engage & we chat about Bill & Brooklyn & who has a dad & who doesn't have a dad and who has a dead dad & who has a divorced dad.
Nice that Joe is aware of divorce and understood the basic concept of divorce. Aware. I love to see evidence that Joe is tuned in & connected. I need to see evidence that Joe is tuned in & connected.
Joe wants to play soccer & I readily & happily & eagerly - not kidding - eagerly agree to most any interest Joe shows or expresses. & So I am doing research for moderately priced, highly organized soccer teams for 8 - 12 yr olds.

Monday, October 28, 2013

Lived & Learned

Bill was not good @ the day to day minutia of life & family but really really excelled @ the holidays special occasions.
Bill made our holidays fun & unexpected - trips to Little Italy,The Staten Island Ferry, a sleep over @ a hotel with a pool & room service NY Botanic Gardens...Christmas Tree with all homemade ornaments & honestly, Bill was the best gift wrapper I have ever met! Fanciful & fun & often Bill would draw the wrapping paper for Joe's gifts. & it was NY so a trip on the A train to Times Square was so fun - a lot to see & take in & the GIANT Toys R Us on 44th Street.
& We were a family.
Family Holidays
Myers Family Holidays
& without Bill, it is not a Myers Family Holiday but me & Joe . Me & Joe keeping busy & in constant search of distractions.
Me & Joe.
2
The lonely guys
This Holiday season will be our third. Holiday season without Bill & between Thanksgiving & Christmas there is our - now mine - wedding anniversary & the third anniversary of Bill's death.
I have sucked @ the last 2 Holiday seasons.
Not enough plans
Not enough distractions
Too man gifts for Joe.
Lived & Learned.
So today I start with 2013 holiday planning in a frightened & manic & use my Visa sort of way...
Christmas Spectacular - Not @ Radio City as it should be - but in Rosemont Il., The Circus, Zoo Lights, Museum of Science & Industry to see Christmas Around The World, Shedd Aquarium ++
November 26 - January 4. Please pass fast.

School's Cool

Every morning - especially every Monday - Joe is happy & ready to get on the bus & I am thrilled to see my guy so excited to get to Agassiz School to see his friends & teachers.
Joe refers to his teachers as "My Adults".
& Every morning & I am relieved for Joe to be out of my care and into the care of the staff @ Agassiz school.

Saturday, October 26, 2013

Whine

Joe has worked his ass off & I have worked my ass off &  and we try & push & grow & raise the expectations & increase the consequences & have new experiences & nurture ideas & interests & read & we read to make us more interested & interesting & less lonely - less alone.    We do all of this ++++ so  Joe has a good  /  better chance of a fuffilling & meaningful life with choices & options.
& it is so hard & exhausting & expensive &  often boring & relentless & constant & I know with absolute certainty we have 1 chance.
1 chance & this is Joe's best chance.

Thursday, October 24, 2013

Batter Up!

Joe is on a winning streak - Joe's very own home run derby.
& it is wonderful!

Hours & hours & hours of @ home therapy + The Pediatric Development Center + Therapeutic play groups + Agassiz School + Dr Y & Dr S & Dr M + Daytranna + Celexa + Catapris + Carbatrol + Joe's general ed play dates + outings + walks + friends + books + CAU + therapeutic toys + constant over seeing & managing & learning most every moment & after 8 full months of all of the above, we have mild to moderate improvement!

We have improvement.
Later we may have regression.
Later we may have tantrums & aggression, but for now we have growth & improvement.

Grateful. I am grateful to every adult,child, therapists, bus driver, aide, teacher, Agassiz staff member, Agassiz parent, Indie Burger employee, Walgreens worker, friend, Doctor, neighbor who has crossed our path & given my Joe a chance to engage,


Not a total & complete day @ the beach, but a pleasant day in the sunshine.

Me & my Joe still move this world like a pair of wilderbeasts, but we are happy to be moving this world.

Autism is a devious twist of fate & circumstance & impossible to accurately predict & or expect behaviors.

"Anything can happen & it usually does"

Hard to take a moment and breath & realax when I know that there is a chance the very next moment can bring a ugly ugly tantrum.

So I take Xanax
& drink red wine or icey cold vodka or tawny port
& I try to stay in the moment.

Joe is learning ( nearly ) age appropriate academics. Thrilling to watch my Joe furrow his brow & reduce a fraction or solve a mathematical equation with 2 variables & or an unknown.
& questions - Joe is teaming with appropriate questions regarding his academics & plenty of inappropriate questions regarding the size of my ass or his classmates pubic hair.

& Joe struggles with reading comprehension & inference & we work on reading comprehension & inference.
& Joe struggles with most everything & so we work on most everything.

High School - 3.5 years away!

Sunday, October 20, 2013

Motorcycle Diaries

For the past few days Joe has been asking me "Did that guy die on the street?" & I would ask Joe for details & Joe would respond to the questions I asked.... "In Brooklyn" "We lived in 9F" "Just Kate & Joe, Bill was watching the Yankees" "It was on a 1 way street".
& I have been concerend & worried - 1. until late last night I had no idea what Joe was talking about & 2. WOW - Joe has been thinking about a horrible accident we saw on Dekalb Ave in Brooklyn in the summer of 2008.
Last night Joe asked again "what about the guy on the street in Brooklyn" & Added "We couldn't run fast, we had on flip flops" AHHHH HAAAA...Yes!
In the summer of 2008, Joe & I would swim most ever day @ a public pool on Dekalb, near Norstrand & one Sunday afternoon we were leaving the pool & right in front of us - literally, blood splattered our legs - a man riding a motor cycle was hit by a car traveling too fast on Dekalb. We called 911 & ran back to the pool to get help & life guards. It was frantic & frightening & fast. & we saw the motorcycle driver be put into an ambulance.
It was chaotic & scarey & it seems this 2008 incident has been on Joe's mind for 5 years & for most of the time, I had no idea what Joe was talking about when Joe asked about "the guy on the street in Brooklyn".
My guy has heart.
My guy has big big problems.

Monday, September 16, 2013

Update

Joe has turned 11.
Joe has had seizures.
Joe has started 5th grade.
I attended a family wedding without my child.
My son's classroom is not as good as it needs to me & I am all over 307. Although 307 needs improvement, I believe there is not a better Austism program within the Chicago City limits.
Joe had a general ed 4th grade friend over to play @ our house!
Tomorrow Joe sees his Neurologist. Joe's right eye hurts. Joe sees "Hurry up Kate Myers, I see black shooting stars". Joe's legs hurt - Joe limps. Joe is having seizures.
& Joe's autism is ever so slightly retreating but Joe's ADHD is aggressively assertive. We need new / better ADHD medication.

Thursday, September 5, 2013

BLUE

 
Joe's 5th grade school year is off to a rocky start.
Joe's 11th birthday is a few days away & Joe is barely functioning as a very immature 9 year old. Another year that I did not do as much as my Joe needed.
Joe is over the moon - can hardy wait - jumping up & down @ the very mention / thought of his birthday party.
Saturday Sept, 7 @ 2p. 20 kids all with various forms of autism, ADD, ADHD. LD ++++ & their parents. & Me & Joe. No cousins or family. & I am overwhelmed so I asked our best baby sitter & friend MW to the rescue & so MW will help wrangle kids & hand out pizza & juice bags & cake...
Last night Joe asked me "Does Autism last a long time?" Followed by "I am done with therapy" "I graduated from 4th grade & therapy" followed by "I need longs sleeve shirts & don't forget to donate all my shorts"
& so I am blue & sulking & feeling that my boy has been cheated.
Saturday is our party.
Tuesday is Joe's actual birthday.
Tuesday.
Me & Bill & Joe.
Brooklyn
September 10, 2002.

Tuesday, September 3, 2013

Silver The HedgeHog & Ebay

This past week end was my brother's wedding.
& seeing my brother happy & in love & surrounded by so many - many! people so happy & interested & joyfull (& lucky!) to be apart of my brothers life, was wonderful. I felt thrilled to see my brother & his wife in a perfect moment.
My brother's wedding was a family event. My eldest brother & his son & wife, my two youngest sisters with their husbands & children & my sister E & mother were all in attendance.
1. 2 sisters are not speaking to me. Apparently not looking at me, towards me or even in my direction & it is crazy & I think, not fixable.
2. Joe did not attend the wedding. Joe's cousins attended the wedding. Joe did not attend the wedding.
3. I attended my brother's wedding with a date.
Very few people in my family asked about Joe.
Very few people in my family asked about my child.
I asked about their kids - well...to the people that who are speaking to me..."Hows XXX school / summer/ camp" I mentioned big kid hair cuts & shoes & made small talk about their kids
It is all awful & heart breaking.
& my family is broken & I am sorry & it most likely my fault.
The wedding was fancy & grown up & urban & not a place for a 10 year old boy who loves Sonic & pizza & skateboarding.
While I was @ my brother's wedding having a very good & grown up time, my Joe was home with his best baby sitter MW having pizza & fun.
Excluded.
When me & Joe 1st arrived in Chicago from Brooklyn, I wanted / demanded that Joe be included. I wanted / demanded that Joe have relationships with his cousins & aunts & uncles. We schlepped to parties & bbq's and outings & we hosted trips to the ice capades, & Ed Debevic's & parties & within 12 months of our arrival, it was clear Joe's cousin's did not / would not have a relationship with my Joe. I think my family would have lost interest much sooner had it not been for Bill's death. I believe Bill's death got us a few more months of invites to family events.
My sisters and probably my brothers too, say I am a bitch - I believe they say controlling & selfish bitch. Demanding. Cold. Selfish. I am a bitch. I am tired.
Everybody is hurt. Everybody has cause & reason.
I know my child is too loud & chaotic & demanding. I know both my child & I are difficult & unpleasant & WTF people? My child is 10 & has PDD/NOS & ADHD & Profound Anxiety Disorder & where is compassion & kindness?
Most members of my family, it is hard to find a member who gives an inch to anyone & due to autism, my son & I need so much more than a measly inch!
Yesterday was a post wedding BBQ that Joe & I had planned on attending together....we did not.
We could not.
Joe's anxiety about a 3.5 vinyl action figure Silver the Hedgehog, purchased on Ebay from a seller in China for 3.25 USD has gotten the best of us. 2 medium sized melt downs in 2 days. All thanks to a 3.5 vinyl action figure Silver the Hedgehog.
Joe has been asking for this action figure for weeks & I was distracted & I hate Ebay & did not make this 3.5 vinyl action figure Silver the Hedgehog a top priority. Back to school, groceries, laundry, work, therapies, appointments BLAH BLAH BLAH....& Joe asked a few times a day "Did I earn my Silver the Hedgehog action figure?" "Did you order my silver the hedgehog action figure?" and asking once a day increased to twice a day increased to 45 times a day increased to constant and 3 days ago increased to relentless.
Yesterday I called 67 collectible / comic / toy stores in and around Chicago - while Joe was relentlessly and maniacally repeating "But I think I earned my Silver the HedgeHog action figure" & yesterday was a post wedding BBQ for my brother & his wife & the tension in my house was 500% & we did not attend the post wedding BBQ for my brother.
& this morning Joe happily went to school & I made a pot of tea & have no idea what to do about the SIlver the Hedgehog action figure. & it is a huge problem. A situation that may not be manageable.
Joe's patience for waiting on the deliver of the Silver the HedgeHog action figure has turned to panic & @ 320p Joe will get off the school bus and the relentless chant of silver the hedgehog will reignite.
& one of us will crack.
I will shout "STOP IT" or something similar
or Joe will melt down & rage.
According to the Ebay seller of Silver the Hedgehog, we will receive the Silver the hedgehog action figure in approximately 23 days.
& tonight is curriculum night @ Joe's school.