A Special Education ; Justin

I tend to write about Kyle a lot and that's mainly because he is one of those characters in life that stands out....always into something....always creating something new....just always there, on my heels and has been since the day he was born....my kangaroo baby that needed (still does) to be in his mother's pouch at all times.

Justin, my eldest son, is very laid back...a calm and gentle soul - one that is perfectly happy taking a back seat and laughing at all his brother does. He shines away from the limelight whereas Kyle bounces towards it.

But don't let that fool you - the day Justin was born not only changed my life, but made a significant impact for positive change in the lives of others. He was beautiful baby...one of those plump babies with a round head, and just a couple of little curls doting the almost bald head. A whooping 9lbs when he was born - and after 20 hours of natural child birth to that size baby...the reason I said "give me the drugs" when it was time for Kyle's birth.

It was in that last half an hour of the birthing process that something happened which changed the course of our history, as well as others. I'll never forget the terror I felt when the doctor screamed at me to stop pushing, and then the next thing I knew an oxygen mask was thrown on to my face. No one told me what was wrong, and being that it was my first birthing experience I wasn't sure if I should worry or not.

The cord had been wrapped around Justin's neck - and I found out later that those few minutes when that oxygen mask was on me was because that dear sweet baby of mine heart beat had gone done, and he was losing oxygen.

When he did come out to meet the world all appeared to be fine. There was definitely nothing wrong with his vocal cords as when he let out that first cry, I am sure everyone in the ward could hear it.

We did as most new parents do, we took our beautiful baby boy home and cherished every moment with him. I can remember us going into his nursery to watch his sweet little body sleep and being in awe that we created that little life laying there before us.

The hours I clocked rocking him while he slept, and talking to him while he was in my arms...telling him about everything I knew, all the family in his life, and all my dreams I had for him...how great his life would be and how much I loved him with every beat of my heart.

A calm baby that rarely cried....he would wiggle with joy when he saw he was getting Blueberry Buckle being airplaned to his anxiously awaiting mouth...a new mother couldn't wish for a better experience...having Justin as my first child spoiled me. He slept through the night after a few weeks of his birth - and always awoke with a smile on his face. (Kyle - well - COMPLETELY DIFFERENT STORY THERE!) .

It was when Justin was around a year old I started noticing and worrying about some things...he wasn't on target with all those milestones that his baby book told me he should be. Doctors dismissed my worries, and told all was fine....boys mature at a slower rate than girls.

He didn't walk until he was 15 months....speech seemed to come incredibly slow....but at the same time in front of me was this happy child who always was giggling and smiling. So adorable he was...one of those babies people stopped and admired....the type where you couldn't help but want to pinch his rounded cheeks and just eat him all up.

My father adored him. He fawned all over his first blood grandchild. Together and for hours upon hours they would sit in recliner together and watch golf or whatever other sport was on television. Justin could do whatever he wanted as long as Grandpa was there. I am grateful they had those two years together before my father died. I am also grateful my father passed on before Justin would be officially diagnosed with mild cerebral palsy, epilepsy and learning disabilities.

So mild was his cerebral palsy that it went unnoticed until he was 7. Although when he was 4 he was evaluated and found to have a speech disorder, and some developmental delays...and that's when my nightmare with the public school system started.

At first the "school psychologist" tried telling me he was in the autism spectrum. She came to that conclusion after just spending 20 minutes observing him. I told her she needed to go back to school because she was an idiot.

"Well he can't follow 3-step directions, and he called that block an 'Enterprise and the other Borg'. He doesn't play with the toys as they are intended to be played with."

My mother's instinct told me why he did what she thought he couldn't do....then I told Justin to please go get my purse in the other room, "carry it like Mommy does, and bring it here to give it to me".
As my child followed the directions this quack just told me he was unable to, I glared at the woman before me and told her - "He doesn't know you, and my child has a very vivid imagination - too bad you were unable to see that as they didn't teach you it in the text book from whatever correspondence school you got your supposed education from."

Justin followed through with the directions, and we took our leave...and yes, I was now labeled that wacky mom who was going to make trouble.

Don't get me wrong, I knew Justin was different...but I wasn't going to allow them to convince me he couldn't do things I knew he could....I was after all his mother - the expert on my child - I wouldn't allow them to dismiss me and label him for their convenience.

He entered the special needs pre-k program under the label of speech/language impaired. He continued on in the special education system under that label up until he was in the first grade. And that's when things changed...that's when I got an overnight education on our rights under federal and state laws...and when I pushed doctors for a correct diagnosis - all of which came when a teacher one night leaned over to me during a parent/teacher conference and whispered, "None of the kids are getting speech therapy - they haven't been," She then told me that they (teachers) need parents to speak up and advocate because administration was breaking the law by not telling parents.

Now according to my child's Individual Education Plan (IEP and something every child in special education has) he was to receive 90 minutes of speech therapy a week. I went home that night not knowing what I could do..but knowing I needed to do something.

Calls were made the next day and I hit brick wall after brick wall. Finally after a useless call to the district and speaking to a special ed. coordinator that laughed at me when I asked questions....the wrong thing to do to this mother.

Very long story cut short...I ended up learning our rights under the Individual with Disabilities Education Act (IDEA) - and formed a parent group for parents of special needs children....from there life took a direction i never anticipated...but always credited it to Justin entering my life and the world. Amazing what a love for a child can do....so many parents learned their rights, and so many children ended up attaining services they needed...all because of this special child of mine.

Within a couple of years our group became a force in the state of Illinois...and eventually on a federal level. It was also soon after that Justin received a proper diagnosis, and we learned exactly what his needs were...

Not only was he diagnosed with the mild form of cerebral palsy..but along with that we found out he was dyslexic, and had a significant case of Central Auditory Processing Disorder (CAPD) which in Justin's case meant there was nothing wrong with his hearing, but rather how the brain processed what he heard. He misses hearing vowel sounds - and cannot discern competing auditory signals. This means when he is in a room that has an appliance running (humming) and there is more than one conversation going on...he is lost..it's an overload for his brain to handle...and it can cause him pain. Imagine what that means in a school setting...in a classroom where kids are talking...desks are opening and closing, and then the noise in the hallway...nothing is getting in...nothing is being absorbed...and he is lost. Top that off with the absence seizure disorder we learned he had....the poor kid was being asked to do the impossible; learn and punished by teaching staff when he couldn't....being told he was "messing around" ..."faking".

What has always amazed me the most about my child was his ability to keep smiling and wanting to learn. He went from a child that could barely put together a sentence because he spoke the way he heard sounds...to an articulate young man who one day would sit in a Senator's office in Washington D.C. and tell everyone there what it was like to be a child in a public school where no one tried to understand him...when he was done telling his story..a young man who was only 9 years old...there wasn't one dry eye in the room...he changed attitudes that day...he made an impact...and I was and am so very proud that he is my son.

I now home school Justin because for us, and his needs, we've found it is what he needs to learn so that he will have a chance at a future he deserves. My son constantly amazes me. He understands more about government and politics than most adults. He has a photographic memory and his mind's eye sees everything in 3-D...he is my navigator when I am lost..my map reader...he loves science fiction and understand some of the most complex issues. He is a brilliant young man and has taught so much about what it means to love and how to be a mom.

Unique in so many ways and because of those few moments at birth that changed our history...his life has already changed history in the lives of others.

Plus...he is also that teenager who is eating me out of house and home....so when you hear me complain about that..know that I do so with a great love in my heart for all that he has brought to me and to others.


Gin said…
What an awesome tribute to your son. He is so fortunate to have a mom like you!
Eva Marie said…
thank you for that..I tend to complain about those teen years so I wanted to make sure I also spoke about just how special a young man he is!
Anonymous said…
This is a wonderful, heartfelt, well-written testament to a great young man (and mother of course). I have known Justin since birth and even I had tear-filled eyes when finished. Keep up the good work Eva!

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