Thursday, September 24, 2009

It's Time To Talk About Autism

--Adrienne Miller

We are coming up on an anniversary in my family. I remember every detail of the day. How kind the psychologist was as we came into the little office. How much I just wanted her to get to the point when she presented my husband and I with our copy of the long report. And, even though I thought I had prepared for myself for what was coming, how much it hurt to hear for the first time that my son, Jack, has autism.

Its not an uncommon scene, though I wish with all my heart that it was. The CDC says that 1 out of 150 children have autism. Which means that a whole lot of families have been through similar first years. And just as many are now starting this journey. 

It's almost been a year now and I think I'm ready to start talking about autism.

I remember the horrible tangle of emotions I felt in those first few weeks and months. Lots of anger and despair. And guilt. Don’t forget the guilt. Maybe I did something to cause this. I have no right to be this upset. Jack is healthy and some people aren’t so lucky as that, you know. 

But then I would see Jack and most times just being around him would snap me out of it. Cause he was going on with his life, not caring about the specifics of that report or where he fell on what chart. He went on being the sweet, funny guy he always was. The little boy who loves trains and books and Disneyland.

Jack went into early intervention program through our local school district, one that gave him 25 hours a week of ABA therapy. We were also lucky enough that our insurance covered speech therapy sessions at our highly esteemed local Children’s Hospital. 

He began making amazing progress. When Jack first started school he only had a vocabulary of about 40 words, now he talks in sentences. The same kid who couldn’t draw a straight line with a crayon can now write his own name. We have a gallery dedicated to his art work in the entryway to our house. He even plays with his younger brother. Not alongside him. With him.

Don’t get me wrong, there is still a long, long road of us. There’s a lot of skills Jack hasn’t mastered. Maybe he always will have those problems or maybe he won’t. I don’t know. No one does. 

But over this last year I’ve learned a lot about my son. He’s an amazing courageous boy who has handled everything that this tough year has thrown at him.  I can only imagine how difficult every day is for Jack-- every day that he has to struggle to communicate, every day that he is bombarded with too much sensory information, every day that he works so hard in school to learn what comes naturally to the rest of us.  And everyday I see him smile. 

And this is what I’ve really learned over the last year. This is why its time to talk about autism. Because Jack isn’t just a 1 in 150 statistic. He is brave and strong and downright amazing. All our kids are. And that is what the world needs to know about them.


Tom Neely said...

folks can put whatever label they need to on him but to me he's just Jack. he means the world to me and he's not broken, he's just Jack.

Sophie Littlefield said...

I am so glad to have started getting to know Jack - what a wonderful boy! Thank you for showing us what a great family looks like. The world needs to see more examples.

Jamie Freveletti said...

What a touching blog. Sitting here with my morning coffee in tears--but a bit uplifted, too. Mostly at the way Jack continues with his day, getting it done. The rest of us could learn a lot from that, couldn't we?

Violet Ingram said...

I'm a mom of 5. My oldest has Cerebral Palsy and Epilepsy. My 3rd child was diagnosed w/ Autism when he was 2 and child #4 was 3 weeks old.

We're also in the "lucky" category. He is now 10 yrs. old plays w/ his 4 siblings, can do things on the computer that I'll never be able to do,and where he had a very, very limited vocabulary talks non-stop now.

I send nothing but the best wishes to you and your whole family.

Martha Flynn said...

you're amazingly courageous too, ya know. :)

Juliet Blackwell said...

THis is such a touching and well-written story of your family, and about such an important subject. Can't wait to meet Jack!

Rachael said...

I love this post. I also love Tom's comment. xo

Liz Flaherty said...

Yay for Jack and Tom and all of you. Sounds as though being "just Jack" is just about perfect.

The blog was wonderful.

Christy Semsen said...

Beautiful. I'm a high school friend of Gigi Pandian. My youngest son was diagnosed with autism 4 years ago this month. We too, jumped into interventions and creative things. He was diagnosed moderate to severe- but Noah is now in a regular 1st grade classroom, and his friends so far don't know about his challenges. I wish the same for you- keep up the work and you won't regret it!!

Jenn said...

I am so grateful for your post! My 4 yr old son was just diagnosed this week and it is a lot to take in. But it is encouraging to know that I am not alone and that my feeling about how beautiful and special my son is isn't unique. Calling them autistic doesn't change the reality of what precious little people they are; its not dehumanizing though I felt that way at first. My little guy is the same as he was pre diagnosis and just as dear to me and everyone who knows him. Thank you so much for sharing your experience with us (and so well written too!)

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