Monday, November 8, 2010

The Autism Secret

I sat by the bay, sipping tea as the kids set out to discover uncharted territory. We were spending time with an old friend and her family on a recent trip to San Francisco. Funny how visits like that always leave me feeling contemplative, triggering memories of a life that seems so long ago and catching up on the selves we sometimes barely recognize in the midst of homework, activities and running a household.

We laughed as we reminisced about our days of working in television together. I swear if I closed my eyes and blocked out the sound of the playing kids, I could almost remember the girls we were -- enthusiastic about the future, filled with curiosity, wondering how it all would go. She and I had taken different paths since those days, but Facebook and our respective blogs were helpful in keeping us connected through the years. Before she even spoke, I knew about her family adventures and how they had lived for almost two years on a beautiful boat docked at a northern California marina. And I didn't have to go into too much detail about life as a minivan-driving suburban wife, she had kept up with my world as well.

But it was only a few minutes in to our three hour visit that I realized that while we had kept in touch, there was so much that was never conveyed online or through holiday cards. Because while I have been known to share the long road to finally bringing our daughter home and those fearful nights my son spent fighting asthma in the ICU, I've never really come out and talked directly about one of our biggest struggles -- our family's autism.

Make no mistake - it's not because I'm afraid to talk about it or secretive in any way. For as difficult as it can be, it's also been a blessing in many ways -- ways I will get into in future posts. If you know us in the real world, it's certainly no mystery. But I think I haven't shared so much because the journey has been long and unclear; a path we've been trying to navigate and understand for almost as long as I've been a mother. And as a mom, I work extremely hard at protecting my children from the judgment, comments and unwelcome "advice" that often comes with being open about our challenges.

But I can't stay quiet anymore.

Autism first entered our life in early 2005, when my son was just 12 months old. We were so fortunate to have a pediatrician that was not only aware, but proactive. My son's language delays were significant enough that she had us bring him to have his hearing tested -- which turned out to be fine. At 18 months, she sent us to a speech therapist who, in lieu of trying to take $100 out of our pocket for each 30 minute session, informed us about the North LA Country Regional Center; a private, non-profit organization providing services and supports to persons with developmental disabilities and their families. After a long, somewhat intense assessment process, my son was approved for four hours of speech and social intervention each week. 

The word autism was never uttered. 

We experienced tremendous progress over the next year or so. At three years old, we made the transition from the Regional Center into the school district; where my son was approved for weekly social classes. With each passing month, his language was improving, he was getting better expressing himself and he wasn't all that prone to tantrums and trouble transitioning; two traits typically brought up when discussing autism symptoms. 

For the next two and a half years, we continued social classes and addressed specific issues as they came up. Difficulty staying on topic, echolalia and "quirks" like toe walking, hand movements and lack of initiating affection were just some of the clues that something was going on with my son. But I was so in love with this little man and immensely proud of all the work he would put in to get through things that seemed to be so challenging for him, I never thought to second guess when professionals seemed to think he was doing fine and never suggested a full evaluation. Even when a couple of family members and friends dropped subtle hints, I knew we were doing what the "experts" suggested -- who was I to question that?

As he entered kindergarten, there was still no mention of the word autism. With an IEP in place, my son was allowed certain accommodations like meeting the teacher in advance to help with transitioning. But outside of 30 minutes a week, he was expected to get through the day like every other neuro-typical kid. As the year progressed, I could see the other children's amazing metamorposis from baby-like preschoolers to elementary school kids... but when it came to attention and social behaviors, my son was clearly lagging behind. 

It was February when the school district announced enormous budget cuts for the following year; classroom sizes would increase, aides would be eliminated... it wasn't looking good for our public schools. That's when it hit me like a ton of bricks... 

If my child has autism, we need a diagnosis NOW.  

How could I send him to a full day of first grade with 25 classmates, one teacher and no tools to get through it? I researched, made calls, talked with an incredible support group and got the ball rolling. I called an addendum meeting to his IEP and voiced my concerns. 

It was April 23, 2010 -- one month shy of my son's sixth birthday -- when a doctor finally said the words we had known for so long.  

Your son has autism.  

Believe it or not, I include that day as one of the more positive days of my life. We had been banging our heads against a wall for five years wanting to help our son but not knowing exactly how. THANK YOU! It had been like someone was holding us tightly around the neck and the diagnosis was like we had finally plied the strongly-gripping fingers off of us and could breathe.

I didn't cry that day. I don't think I had any tears left. I had shed them all for almost six years already, I was tapped out. I began to look back at all we had been through and how different it would've been had we really understood. Like the time when he was nine months old, I called Jeff at work crying about my day. "I don't understand. I thought when I became a mom, he would just love me. He doesn't even care that I'm in the room." I remember how heartbroken I felt, how I thought I wasn't worthy of my baby boy's love, how I longed for his little arms around my neck like every other mom seemed to get from their child. 

I remembered how he never mimicked the things we showed him, how he was almost two when he clapped for the first time. My heart hurt when I would think of all the times he was overwhelmed and how he would close his eyes to make it all go away. I had spent so many sleepless nights worried about my baby boy, questioning myself as a mother... why hadn't anyone stopped me, looked me in the eye and told me to get a diagnosis before now? Why did it take so long and so much work to get here?

For the next several weeks, I went through the grieving process. If I'm totally honest with myself, I probably still am. But at the same time, I refuse to let my own fears and frustration prevent my son from getting everything he needs; at school, at home and in our community. If there has been any hesitation about sharing our family's autism (because it really is something our whole family experiences), it's only because there are so many people who choose to not understand it. And while I do whatever it takes to help my son succeed in whatever it is he wants out of life, I wouldn't change a single thing. Because every moment with him in my life has been an absolute gift... even when it doesn't feel like it.


Kim G. said...

Beautifully written ... very touching and heartfelt. Thanks for trusting us with your thoughts and feelings xoxoxox

Renee Bowen said...

Great post, Jackie! I don't think I will ever stop grieving, but not because I'm still sad or upset about my son's diagnosis...but more because I see him struggle on a daily basis and will continue to do so for the rest of his life. So many times I wish I could just take his struggle away, make things's a parent's auto pilot reaction. But, just as we have to let our neuro-typical children fall and get back up, we have to do the same for our extra special needs kids. I would never change who Reece is.... autism is part of what makes him who he is...but it doesn't define him, and I hope one day he will find friends and maybe even a "girl" friend who loves and appreciates him as much as I do ;)

Tami and Bobby Sisemore Family said...

Thanks for sharing Jackie. Noah has some
Tendencies but genus very affectionate though at times in a rough way and very clingy. I have no clue

Maci Miller said...

Wow, Jackie. I am so sorry for what you have gone through and yet I am glad your boy has YOU as a mom to pull him through and love and guide him every step of the way. My little brother has SEVERE autism and mental retardation and while it has been an extremely hard road for my mother, it has also been a huge reward to know and love this amazing boy. (Well, now he is a young MAN!) I wish you and your family continued love and success. Glad to see you are still blogging, too. Have missed your writing and advice and stories!

Hazen N. said...

As someone with an autistic spectrum disorder that was diagnosed later in life, I must say that I'm happy that your son got one as soon as he could. Every little bit helps, after all. And while I can't pretend to know your son's thought processes, I'm sure that he thinks you're a wonderful mother. :)

On an unrelated note, that was nifty that he was diagnosed on my 26th birthday.

Hazen N. said...

Addendum: You know, in so far as how 6-year-old boys think of their mothers at that age.

Anonymous said...

Stumbled upon your post after someone posted it on Twitter. It was amazing to read. I remember telling my husband almost the exact same thing when my son was an infant. I also understand the relief it can be to get the diagnosis! I cried off an on for 3 days when my son hugged me for the first time.

Thanks for sharing.

momwithfaithandhope said...

Love this Jackie. You certainly have a way with words. I wish I could somehow print this out and put it before a family I know. You embrace your children fully. Each and every one of 'em. We're still trying to implement the "no thank you" we've picked up from your wonderful family.