Behind the Autism Statistics, Fact 1

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Fact:A child with autism may appear to develop normally and then withdraw and become indifferent to social engagement… Children with autism may fail to respond to their name and often avoid eye contact with other people.” (NINDS)

People often ask my husband and I, “What was it that made you think that your son was autistic?

Loving his bathtime

Loving his bathtime

He was a good baby. I mean a REALLY, really good baby.

10 months old

10 months old

He had a suitably round head, capped off with dark spiky hair. Big hazel eyes fringed with long eyelashes. Bestowed with an angelic smile, he rarely cried and laughed often.

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first Beach trip

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1st Christmas

He had started baby talking. He responded to his name and delighted in playing Peek a boo with his 8 year old older sister. He had cooed and laughed, rolled and sat up, crawled and learned to walk all on time his pediatrician noted at every check up. Status quo. “Normal” by any standard.

So what was it?

He quit responding to his name

He quit responding to his name

It became harder and harder to get him to look at us when taking pictures. He laughed while lying in his crib, gazing at a spot on the ceiling. He withdrew into himself, his language dwindling down to just a few words. He had never played with toys the way they were designed to be played with – lining up cars instead of pushing them along “vrooming”. He would spin his ABC blocks in both hands, stopping every so often and babbling at the letter or number showing up.

OP-tics Book - his favorite "toy"

OP-tics Book - his favorite "toy"

His favorite book was an Optics college textbook and he would turn it page by page endlessly. He climbed compulsively, but never fell. He quit turning when we called him.

We had his hearing tested, but he could hear just fine. The doctor said he was a boy – they talked later and not to worry.

One day as I let the water out of the tub, I said, “Ok! Now get ready to say byebye to the water…three…two…” and he looked up and said “One…zero!”

“YES!” I shouted “that’s right!!”

Beaming he began to count back up to ten, “One…two…three…”

Amazed and excited, I realized he was hearing everything and THEN some!

When he reached ten, he began to count backwards back down to zero.

And then he did it again all the way through.

Only this time in Spanish. (Side note: we are not a Spanish-speaking household)

Trying to engage him in our world made him miserable

Trying to engage him in our world made him miserable

So we took him for an evaluation. In the waiting area he pointed at the sign above the door, declaring “Exit!” Sigh…

He had significant enough delays that they diagnosed him in the Autism spectrum. At 26 months old, he was a bit too young to hit ALL the criteria, but given a few more years he would, we were told. We needed to take him to the “experts” at Children’s Hospital to get a confirmation. (Side note: The confirmation came with the recommendation that we “be prepared to institutionalize him when he hit puberty” and nothing beyond speech therapy and special education classes were suggested as treatment. (Side note to the side note: We didn’t agree.))

Time, at that moment, was suspended for a heartbeat. A time-divider was born. Life was one way BEFORE that moment and life was irrevocably different afterwards.

“Autism…progressive…no cure” kept floating in my head and every time my stomach would drop to my feet.

How could they know what his fate would be? He was only a baby, after all! It was a neurological disorder and science wasn’t always so predictable when it came to the brain, right? I mean, I had heard stories about people who had lost part of their brains, for heaven’s sake, and somehow they were able to do things they were told they never would! We would see.

That was April 12, 1996. My husband’s 35th birthday and we were in town to be in my little sister’s wedding. Positioning a smile across my face, I pushed it all to the back of my mind reminding myself that this was her wedding day – HER day. I could reel and grieve and begin researching what to do when I got home. I would be doing nobody any favors by dwelling on it – I couldn’t change the reality and I couldn’t start making any changes until I got home, so why not live in the moments as they unfolded? Announcing a diagnosis like autism could change what was supposed to be a celebration and the happiest day of her life – and to what end?

Nope. There were plenty of days on the horizon that could be eclipsed by the magnitude of autism.

Miracles happened everyday, didn’t they? Of course they did! And as I reached down to strap him into his car seat to head back home, he looked up at me and a smile spread from his eyes to his mouth. Inside my heart, hope was born. I wasn’t willing to watch him slowly withdraw into his own little world without a fight.momnme

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6 Responses

  1. All the facts…yes….but boy is he photogenic. I am loving these posts. Thanks LeLe for sharing your precious angel with us:)
    xxoo,shelly

  2. Beautiful words, beautiful child from a beautiful Mom. Thank you for sharing….

  3. Thanks for making me cry first thing in the morning, Leigh! Haha! What sweet pictures of him as a baby. This is a beautiful “journal” of your journey…and will be a source of blessing to those who read it. You are such a gifted writer and creator. I had no idea you found out the day before my wedding. I knew it was around that time…but didn’t realize …that must’ve been soooo hard for you. I always have such guilt for that time we were at the beach w/ Brroke and Robert was hysterical for several hours while we waited on that stupid restaurant. Can’t believe we didn’t say, forget it, let’s go somewhere else. Please forgive me for my stupidity and selfishness. I still fee so bad about that night! Keep posting…Love you! Laney

  4. Hey Leigh, I hear a book coming, THis was a good easy read, and I look forward to more of ….brain is searching for a name of the book
    Robbie’s Dream
    The Dream of Robbie
    Hope can be a Smile Away
    hmmmm
    .

  5. […] with Elected Officials” Pam Klipa, The Arc of PA’s Training and Special Education Coordinator Behind the Autism Statistics, Fact 1 – fencepostings.wordpress.com 04/06/2009 Fact: “A child with autism may appear to develop […]

  6. Wow! Leigh you are a beautiful writer….I teach art in an elementary school and work with several children with Autism…I can’t wait to read all of your other posts.

    I just finished reading “Heaven is Real” written by the same guy that wrote “90 minutes in Heaven”…all through the book he keeps talking about events in our lives that happen to change everything and require us to find a new “normal” to gauge things by…I know with Robbie your “normal” changes and you and Drew seem to adjust very well.

    I’m so glad facebook was invented and we are reconnected…I want to meet Drew in person though…since I know the rest of his family! Let me know when y’all are in the B’ham!

    Much love
    Mary Jane

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