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Friday, October 2, 2009

loving trace: the long journey dealing with aspergers`and cerebral palsy

He`s beautiful, isn`t he?  I fell in love with him the first  moment I laid eyes on him.  Just after midnight, born 7lbs, 8 ounces and without a pulse.  Born blue and needing to be resuscitated as I watched helplessly, bawling into my husband's arms.  

When  I look back on the past three and half years and all our family has gone through.  It seems like a lifetime.  All those worried nights, lying awake in the darkness and listening to him breath.  The knowing that something was wrong and wondering when was someone going to figure it out before I went insane? 

When I was pregnant with him I knew he was going to be special.  I knew there would be something different about him.  I just knew.  It began after four months, late at night after leaving the hospital because of a scare and needing to get things checked out to make sure I wasn't having a placental abruption, like I did with the last (before him).  There was this young man at the bus stop where my husband and I waited.  Must've been maybe 23 or so.  Out of the blue he asked if he could say a prayer for the baby I was carrying.

Two months later again.  A woman, walking downtown stopped.  She picked up a paper I had dropped and smiled at us.  "You are expecting.  That's wonderful!"  She said.  Then she gazed over me and frowned.  She asked if she could say a prayer for the baby.  Two more incidents followed with two seperate individuals we'd never met - until we came into our last month.

I was standing outside the bank.  Forgetful Dad (hubby) I call him that because he has a brain injury which basically renders him like Drew Barrymore in 50 first dates, forgot our key for our bike lock at home.  So there I stood, big as a house and waiting as FD and my oldest son Gamer went home to fetch it.  When this elderly looking man approached me.

He was a painter there to do work on the bank's outside sign.  We got to chatting and it happened.  He placed his hands on my belly and I'll never forget what he said.  "Lord, keep this child safe for he's one of yours and god bless this family."  I still get chills just thinking about it as he followed up with a prayer of peace for me not worry.  It would be all right.

My son came three weeks early.  He came fast.  Twenty minutes, high risk labor and finally he was here.  They did get him to breath (on his own) too.  And they released me fifteen hours later with a severely jaundice and sick child due to bed shortages.  We went back in two days later after Bradycardia and Apnea took away my sleeping at nights making calls to 911.  He went under the billy lights.  He regained his colored.  But something -- something was different about him.

As a mother you know -- you know?

When something is wrong with your child.  You feel it.  It's hard to describe without coming off sounding like a lunatic and over-protective.  But I knew there was more to our son's condition then just (slow to develop) or (failing to thrive) but will catch up.  We knew.

At first they thought it was Cystic Fibrosis.

His first test came back positive and my heart sank.  But a retest showed he was normal and that wasn't it.  It was something else.  At a year he couldn't sit up on his own.  He didn't really cry much.  His eyes seemed vacant, though he still smiled.  He didn't move the way he should have been moving.

I remember his first birthday sitting at McDonald's, him in a highchair with pillows propped up so he could see because his mobility was lacking and how hard he cried when everyone started singing.  It was too loud and the place was too noisy for him.

I was no stranger to a brain injury or the effects caused by one.

In dealing with my husband day to day it's all around me.  The lack of emotion.  The inability to comprehend feelings and remember anything.  I was a strong woman.  I had been through my fair share of past ghosts and demons.  I could handle anything they threw at me.  At least that is what I told myself each and every time we left Children's Hospital, only to be rescheduled for another visit with another department.  (Metobolic, Endocrynology, Orthopedics).

I can still hear the words as they came tumbling from the neurologists lips.  "Your son is recovering from a brain injury.  He has Cerebral Palsy..." 

"He doesn't look like he has CP..."  Everyone says when they meet this bright eyed three year who runs and plays like everyone else.  We are lucky.  It's only mild.  Except he doesn't -- run and play like everyone else.

Each night he comes in -- it begins.

Heat on the legs and the tears that follow -- especially if he's been playing hard with the other kids outside.  Cerebral (meaning brain) and Palsy (meaning affecting his legs) is the best way I can describe it when someone points out just how normal Trace is.

Most days he's good.

Most days he pushes himself and it's amazing to think he only started walking a year and a half ago, just before his second birthday.  He doesn't wear braces and we consider that lucky.  Sure it took him until this year to learn how to climb and jump, but that's okay.

He's alive and he's happy.

But he also lives in his own world.

Trace with his Nana

You see on top of his Cerebral Palsy, Trace also has Asperger's Disorder.  One of the milder pervasive developmental disorders (PDDs) on the autism spectrum.

We do not know how severe the disorder is concerning Trace as he has yet to be diagnosed.  In fact we just put him on the waiting list (which can take) six months up to a year to wait before we find out.  What we do know is that dealing with this disorder doesn't change that we love him.  Just how we love him.

Trace socializes with other in a group setting - but needs to be frequently told to share toys and reminded what appropriate behavior is when he becomes angry.  He's tenacious when it comes to wanting something.  Some call it stubborn.  Child Development calls it's brazenly focused (GOD BLESS) them.


He doesn't always pick up on facial cues or body language.  He doesn't understand body space.  "I want to hug you..." he will repeat over and over and over, even during inappropriate times when space is needed or wanted from someone else.  He never gives up.

He can become aggressive, too.

He's three yes, and just learning what is appropriate and inappropriate behavior can be difficult for any child this age.  But for Trace it's even harder. There are four main reasons to Trace's thinking and feeling when he acts out in ways that others may see as being spoiled, a bad child, poor parenting (on our part) or just a troublemaker.

1. To avoid something – He can become aggressive and shout if things don't go according to how he thinks or feels or if he doesn't want to deal with what someone wants to tell him because he's disconnected from the emotion entirely.

2. To get something – He may lash out at another child because they are playing with a toy he played with (whether it's a week ago or yesterday) that is his toy and he doesn't quite understand the concept of sharing items or space.  This can lead to biting, hitting, slapping, screaming and punching.

3. Because he's in pain – He may show a range of challenging behaviors to us or other people because he feels physical pain (such as with his legs) or when he's sick.

4. To fulfill a sensory need – He may lash out or shout if we are in an environment that becomes too noisy, too busy, too hot, too cold, or strong in a particular sense of smell or feel to him.

He's in his own world and reaching him isn't always easy.

Today was a bad day as far as days go when loving him.

It started out with getting up for school (which he enjoys).  Trace goes to preschool.  It's a fine arts school that works with children with a variety of disabilities and his teacher Mrs. Marilyn and Kathy from Child Development work with Trace on teaching behavioral modification and socializing skills that he needs.

He refused to eat breakfast, like he does every morning until I convinced him a vanilla pudding would hit the spot, followed with a fruit snack before he hopped into the car with daddy, his knapsack in his hand because he refuses to allow anyone else to carry it or touch it and they were off.

9:30 to 11:20 Tuesday's and Thursdays is my peace.  My only sense of peace while he's away.  And yet I miss him when he's go - go figure and can't wait to see him barreling through the door with his new piece of work he's done in art therapy or new song he's learned during music time.

It was a rainy day today, and so I knew it was going to be a challenge since he loves to play outside.  Despite the problems with his legs; Trace is no stranger to pain and will take it when and wherever he can, just so long as it revolves around playing with his older brother and running.  His orthodics help him some but we know come bath time he will just lay there and soak his legs for an hour.

* He definitely knows himself and his limits.

He asked thirty nine times if he could go outside followed by several melt downs which involved hitting me twice, throwing himself on the floor, crying and spitting at DH and screaming loudly.  That is his newest form of expression - to scream that he's angry and bawl his hands into fists with the look of death upon his face at you. 

Then we had lunch...

We picked up Gamerboy at 2:30 and it was challenge for our parent teacher conference.  "Stop talking mommy..." he demanded while constantly poking me and grabbing my face to turn my attention to him asking if we could leave because he felt uncomfortable.  Thank God big brother kept him busy turning his attention to the computers so we could finish up our conversation.

Back at home again.  Trace wanted to do the dishes.  He got a chair, despite me telling him there were no dishes to do.  Another melt down - he became angry and threw a fit.  He cried hard and screamed and bit me on the leg.

Nana (my mother) offered his services to help mommy make supper.  The distraction worked wonders for a short period of time and so we cooked supper together.  Thanks mom.

Standing on the chair; he helped me pour his doodle bops (alphagetti) into the pot and stirred while he waited for it.  When it was ready he sat down at the table.

A few moments later he was covered in it because he threw it across the table.  It wasn't cold enough and another melt down, followed by tears and I'm sorry mommy with no expression on his face.  We cleaned up and began to spin, clapping our hands to make it through before another emotional fit broke in.

* spinning works for Trace as a distraction and as a calming effect when his senses are overloaded.

Daddy had to go to volleyball and so it was just me and the boys, upstairs to play a few computer games while Gamer did his homework.  Trace loves Backyardigans Race way.  He could play for hours and learning to wait and be patient is something we are working on each and every day.  Finally it was bath time.

Both of us in the tub, he soaked his legs.

Bruised and battered; again he's no stranger to pain.  In fact most days he rarely cries when he falls, since his balance isn't always great.  He is used to it.  He uses the stretches Evette his physiotherapist taught him from Child Development.  Flex the toes... then the feet, stretch them out and relax.  He even breaths, it's cute.

Then on to washing mommy's hair.

He has to wash it but can't touch the soap because he doesn't like the feel of it on his fingers in my hair (just his hands) not on the hair.  He rinses it out with the same cup that sits on the side of the tub and has been sitting there since he was a year old.  We can't use another one or (melt down).  It has to be that cup.

Done... we get out and dry and begin our settling down time. 

Okay not!  Chasing and trying to compose my patience as he asks... "when is daddy coming home?"   for the fifty millionth time, hitting his brother whenever he can, pinching him and then biting me again, this time on the neck because I said "soon." but he wanted daddy now and he cries hard for him for fifteen minutes with me holding him to give him some sensory relief.

All this led to more spinning and clapping and singing.

* Trace loves to sing songs. 

In fact he loves music of any kind and will be starting guitar lessons this month.  He is very excited.  My uncle is going to teach him.  Another challenge well worth going through but one well worth it.

Trace's legs after a week outside

Ten o'clock and we are still fighting with bedtime.

Trace doesn't sleep in his own room.  He doesn't have a bed.  He only plays in his room.  We went through six beds in the past year and ended up giving them all away or selling them.  Too hard, too soft, not enough room, too much room.  You name it.

He sleeps on the sofa downstairs.  Sometimes in our room, but he doesn't sleep well if he does.  Mostly it's the sofa.  We don't know why.  He likes the feel of it I suppose.  Finally asleep he will sleep straight through the night until morning.

I sit and watch him.

I sit and sometimes I cry.

I don't cry because he's different.  I don't cry because he's got disabilities or challenges.  I cry because loving Trace is a challenge and it takes all I have each and every day to try to reach him.  God... how badly I wish I could reach him some days.   My arms are open wide and my heart hangs by thread when I see him play and try to talk to him but there is no answer, no-one listening, only repetitive talking on the subject he wants to discuss over and over -  until he's ready to hug or awknowledge we are there.

We are there.

It's a long journey dealing with Asperger's and Cerebral Palsy and it's one I never asked for or counted on when I had Trace.  But it's one I am not ashamed to travel through either.  I love Trace more than anything in the world.  He's my baby.  My little man.  My pickleboy.  My angel and each day is a challenge.  Each milestone a blessing.  With every bad day there is a good one in between somewhere.  Stolen moments of priceless effort and harmony (even if briefly).  Trace just has the ability to bring the best out in your and the worst at the same time.  That's talent in my books.

"So daddy heard you weren't a good boy for mommy while daddy was gone.  How come?"

"I played with this doll."

"Trace, why weren't you a good boy for mommy?"

"I played with it's hair."  His eyes focus on the blue hair upon the treasure troll some man willingly handed to him at the swap fair for kids.


"Yes?"  Not looking at either of us.

"When are you going to be a better boy for mommy?"

He glances over at me, walks up to me and gives me a big hug and whispers in my ear.  "Saturday, k mom.  On Saturday."

Saturday is how he always answers hard questions he wishes to avoid or cannot cope to answer and both my husband and I smile.  Trace was born on a Saturday, so it only makes sense.

I'm truly blessed not because Trace is my son.

I'm truly blessed -- because I was chosen to be his mother.


A.Marie on October 2, 2009 at 7:36 AM said...

What a wonderful post! I am raising our adopted foster daughter, who was diagnosed as Fetal Alcohol, when she as 11, and she also has autistic tendencies. I understand alot of what you are experiencing, and can totally relate!

My son, who I was (unknowingly) pregnant with, when we got our daughter, has Obesssive Compulsive Disorder and also has some sensory issues. Going shopping or other places, where there are alot of people, can be such fun at times. NOT!

God Gives us Much Grace and Strength when we need it! :)

Frugal Vicki on October 11, 2009 at 1:14 PM said...

Wow. You never, ever fail to amaze me. To begin with, how you tell the stories of your life are so amazingly beautiful, but you have me loving a little boy I never met, a little boy who I am sure is so very misunderstood by so many people. That people prayed for him while you were pregnant is absolutely amazing! It gave me goose bumps. He is such a handsome little man. You have a strength that I doubt many other than you have, and I only hope those in your life recognize it.

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