Saturday, January 8, 2011

Special

Peter has always been special. He was  our first child, he was our parents first grandchild and the first nephew to our siblings.

He was born after 26 hours of labor and 5 of those lovely hours were pushing...and he was PERFECT! We stared and stared at him for hours, looking at his tiny hands, staring at his lovely eyes (when they were open). We were 23 years old, he was only a minute old and the world was right.



When he was about a week old we received an urgent call from the doctor's office to rush to the blood clinic at the hospital, something was seriously wrong and they were keeping the clinic open.
We were in a panic, Josh FLEW....and got pulled over and we begged as any terrified parent would do to ticket us later just let us get to the hospital. That blessed RCMP officer let us go but told us to go slower and then followed us.

After blood work and sad looks from the nurses who would say nothing we raced to our doctors office to learn that our son had failed his thyroid test.
We learned that with treatment who would be 'near normal'. As parents we were horrified! What the heck does a doctor mean by 'near normal'? Would he read? Ride a bike? Get a job? Talk?
We spent 3 days, surrounded by family, crying and praying and begging. Our prayers were answered on day three when his blood work showed his thyroid WAS working and at perfectly normal levels. We were thankful and felt as if we had dodged a bullet.

Over the years Peter tested every ones limits, as  baby he was easy going, happy in his routine, but we soon learned that letting other people hold him would mean a very long night of him screaming.
As a toddler he was the master of tantrums! My parents would grin and giggle and say it was the universes way of balancing things...God was just giving us a taste of what i was like...and so I plundered through days peppered with 20-30 tantrums a day, head banging, and wails. Peter was very touchy as a toddler, he liked his routine to be as tight as a ship's schedule. If his granola bar broke...there was hell to pay!
When his little brother arrived there were many nights I sat up with a fussy infant and a screaming toddler.

Day cares and family members learned very quickly that Peter liked things one certain way and his temper could rival the best. When things went his way and were in order he was the happiest little guy. He played, danced, followed my father (Papa) and babbled.

At two I worried about his babbling but was assured he would form words any day, at three he used two words put together here and there, babbled and lisped the rest and then 18 month old Charlie started speaking clearer then his older brother.

Off to speech therapy we went!! Peter made great strives, threw some mighty tantrums, and some days shut down and refused to do anything. In his good moods he was a dear!! But with Peter he was night and day...

Time marched along and a new sister arrived, school started and new worries for Josh and I...school. I worried about his temper but was assured he was just 'young for his age'...the tantrums continued, odd little behaviours emerged, bathroom routines that became such elaborate rituals that this 5 year old little boy would hold his bladder till he got home. After school was a nightmare of crying jags and tantrums. He showed to be very, very bright but easy to tear, easy to agitate, and some days just terrible difficult.

Phone calls home were commonplace and he got the reputation as being 'difficult', 'bratty' and people openly pitied his teacher.

As horrified parents we spoke firmly to Peter, tried to get to the root of the crying, put him in sports to burn off some of this energy. Josh coached his hockey team and many practices ended early because Peter was crying. We kept in constant contact with his teacher, discussed each incident.

Then around March, at school his behaviour seemed to settle, he was quiet, withdrawn but at home he was moody and volatile.

April we received a phone call from a stressed out teacher,

"If you do not find out what is wrong with him, he cannot return to school."

My heart dropped, I mean expelled at 5 years old? Nice...
Part of me was sick...wondering what was wrong with him? One part prayed we found the answer but another part prayed that there was nothing wrong with him and it was just us.

Appointments with a clinical psychologist, a referral to a pediatrician who specialized in social disorders...and we had the diagnoses of Autism Spectrum Disorder.
Extensive testing revealed he doesn't understand facial expressions, crowded areas and large crowds can cause him to feel like he is overloading. He has OCD, high anxiety, issues with pain receptors. This year we are dealing with texture issues that we have never had trouble with before.

All in all he is just wired a little differently.

The more I learn about autism, the more my head hurts. No case is the same, it is political, it is social, for others it rules their lives, for some there is shame.

Two weeks ago, I braved the malls and took the three kids shopping alone. We were having a fairly good day and the kids all had gift cards from Christmas. We had just bought a few new books, and the boys spied the video game store.
Parents can see where this is going...big tantrum!!! But not for what you think...Peter noticed all the games had bar codes and he was reading the bar codes...after 10 mins he was frantic...and we left.

To the woman who walked by and saw me standing new two my three toddlers, one who was standing quietly (Charles), one who was in the stroller and being good (Kathleen) and the one who was on the floor screaming, 'GO BACK!!!', she commented to her partner, 'What a brat!'...
Ma'am, if I did not have the worry that my screaming little boy would not bolt and run (which he does and why we keep a firm grip on him at all times), I would have chased after you and told you he is autistic. He is high functioning, he is brilliant, he can remember conversations from 2 years ago, he is athletically gifted and is in gymnastics. I would have told you to keep your comments to yourself and instead of judging why not asking if you could help. Instead of laughing, why not walk over and offer encouragement. Instead of assuming why not ponder that maybe there is more going on then meets the eye?

I still cry for my son, I don't want him labeled, I don't want him to be set apart, I don't want him to be ridiculed.  I want him to be perfect, I want him to be accepted, I wish for people to understand.
I am thankful and blessed that now that he has a diagnosis his school has stepped in to offer him every resource available.  He has speech therapy, social play therapy and soon to come occupational therapy.
In so many ways he is a normal little boy, he plays with trucks, he fights with his brother, he loves intensely and in so many ways he is a little out of sync with the world.

But I would not trade him for a million 'perfect' boys, he is my son, he is autistic and he is special and I am so very blessed to be granted the chance to be his mother.

2 comments:

  1. Great post. I don't know what you are going through, and I can only imagine how tough it is. I'm sorry for that woman and her comment. It's a reminder that we don't always know the entire story.
    (from MMB)

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