Just four years ago, everything changed for my family.
Diagnosis: Autism Spectrum Disorder
Come again? I gazed down at my blue-eyed toddler, sucking his thumb.
God, I loved that kid. His smell. His smile. My baby. The last I would have.
No known cause. No cure.
He lounged in the red all-terrain, super-cool mountain buggy. I liked to jog with it. I had researched it on-line, obsessing about finding just the right configuration.
I loathed the stupid travel system stroller I had used with his sister. I was a novice when I ordered it. It was way too heavy. Way too complicated. This model was light. Easy to manipulate. I had it all figured out, this mothering thing..
Diagnosis: Autism Spectrum Disorder
Come again? I gazed down at my blue-eyed toddler, sucking his thumb.
God, I loved that kid. His smell. His smile. My baby. The last I would have.
No known cause. No cure.
He lounged in the red all-terrain, super-cool mountain buggy. I liked to jog with it. I had researched it on-line, obsessing about finding just the right configuration.
I loathed the stupid travel system stroller I had used with his sister. I was a novice when I ordered it. It was way too heavy. Way too complicated. This model was light. Easy to manipulate. I had it all figured out, this mothering thing..
Jack was happy sitting in it. He liked to go, go, go…Gazing out at the great big world whizzing by.
Scribble. Scribble..
I couldn't comprehend the gibberish the hurried neurologist was writing and the glib delivery of it all.
And I just knew he was dead-wrong.
No way.
No known cause.
No cure.
Not my baby.
Hot, heavy tears rolled down my cheeks and splashed on the page.
No known cause. That’s what he wrote.
Really? My head swirled in confusion. The words now smudged with my tears.
No cure. A life sentence delivered via a four by six memo pad.
No way.
Not Jack.
Autopilot on, I kissed Jack’s sweet, warm head and wheeled the fancy red stroller out the door of the examination room, navigating the cubicles, bathed in florescent light …
and despite my best efforts, fell apart.
Calm, collected, Judith ... Lip gloss still perfect. Standing up straight. Pushing forward.
Spontaneously combusting...
We would never be the same.
Dammit.
Jack had just been diagnosed with autism.
He would very likely end up institutionalized.
Institutionalized.
I just couldn’t bear it.
No known cause.
No cure.
$50 copay. Just come back in four months so we can tell you the same thing again.
No hope.
Your child has autism. Yes, it’s severe.
No known cause.
No words. No friends. No independence. No answers.
No cure.
No hope.
No. No. No.
Four years later, the red stroller hangs on the wall in the garage. Stroller-cruising has now been replaced with an IEP goal of “riding a two-wheeler with training wheels across the gym... twice…”
At age six, Jack can now spontaneously say “I want cookie.” He runs into the bathroom when the urge hits.
He eats a variety of foods. In fact, I almost drove my car off the road the first time I gazed into my rearview and saw him stuffing a chicken nugget into his mouth.
He gives juicy kisses.
He whispers … “I love you..”
He means it.
He’s grown bigger. And he's so much better. Thank God.
We've pushed through. In spite of the dire predictions of the neurologist, we've put one foot in front of the other, believing that there are answers. We've found treatments that have dramatically improved Jack's quality of life. We've assembled a team of educators, medical doctors and therapists who operate on never-ending hope, incredible expertise and a commitment to individuals with autism that is truly inspirational.
The heartless neuro has long been fired.
Jack's a happy dude.. See for yourself.
And four years later, according to a report released just today by the Center for Disease Control, the number of kids like him with an autism diagnosis has grown rapidly too.
Autism Spectrum disorder is now diagnosed in:
1 out of every 110 children.
1 in 70 boys.
750,000 children in the U.S. alone.
Yet some things remain the same
Still no known cause.
No cure.
If only the federal government could find the wherewithal to push through.
Stand up straight. Navigate.
Work to find the answers the millions of people impacted by autism need and deserve, not later, but now.
No reason to stop hoping. The sweet boy in the red mountain buggy is living proof of that.
Scribble. Scribble..
I couldn't comprehend the gibberish the hurried neurologist was writing and the glib delivery of it all.
And I just knew he was dead-wrong.
No way.
No known cause.
No cure.
Not my baby.
Hot, heavy tears rolled down my cheeks and splashed on the page.
No known cause. That’s what he wrote.
Really? My head swirled in confusion. The words now smudged with my tears.
No cure. A life sentence delivered via a four by six memo pad.
No way.
Not Jack.
Autopilot on, I kissed Jack’s sweet, warm head and wheeled the fancy red stroller out the door of the examination room, navigating the cubicles, bathed in florescent light …
and despite my best efforts, fell apart.
Calm, collected, Judith ... Lip gloss still perfect. Standing up straight. Pushing forward.
Spontaneously combusting...
We would never be the same.
Dammit.
Jack had just been diagnosed with autism.
He would very likely end up institutionalized.
Institutionalized.
I just couldn’t bear it.
No known cause.
No cure.
$50 copay. Just come back in four months so we can tell you the same thing again.
No hope.
Your child has autism. Yes, it’s severe.
No known cause.
No words. No friends. No independence. No answers.
No cure.
No hope.
No. No. No.
Four years later, the red stroller hangs on the wall in the garage. Stroller-cruising has now been replaced with an IEP goal of “riding a two-wheeler with training wheels across the gym... twice…”
At age six, Jack can now spontaneously say “I want cookie.” He runs into the bathroom when the urge hits.
He eats a variety of foods. In fact, I almost drove my car off the road the first time I gazed into my rearview and saw him stuffing a chicken nugget into his mouth.
He gives juicy kisses.
He whispers … “I love you..”
He means it.
He’s grown bigger. And he's so much better. Thank God.
We've pushed through. In spite of the dire predictions of the neurologist, we've put one foot in front of the other, believing that there are answers. We've found treatments that have dramatically improved Jack's quality of life. We've assembled a team of educators, medical doctors and therapists who operate on never-ending hope, incredible expertise and a commitment to individuals with autism that is truly inspirational.
The heartless neuro has long been fired.
Jack's a happy dude.. See for yourself.
And four years later, according to a report released just today by the Center for Disease Control, the number of kids like him with an autism diagnosis has grown rapidly too.
Autism Spectrum disorder is now diagnosed in:
1 out of every 110 children.
1 in 70 boys.
750,000 children in the U.S. alone.
Yet some things remain the same
Still no known cause.
No cure.
If only the federal government could find the wherewithal to push through.
Stand up straight. Navigate.
Work to find the answers the millions of people impacted by autism need and deserve, not later, but now.
No reason to stop hoping. The sweet boy in the red mountain buggy is living proof of that.
Posts
23 comments:
Hope! Love! Perseverance!
I know we didn't have the same neuro but the delivery was "delightfully" the same. I don't go back anymore. I can tell how he's doing and since so far so good he has no other underlying medical conditions associated with autism, I leave well enough alone.
Love!
yes!
yes!
and by god yes!
What Jess said. And I'll add this...
HELL yes.
As proud as I am of my kid's accomplishments, I get frantic when I hear people say "Oh they must not have been THAT disabled" or "Gee, it's great they grew out of it".
Multiply my frantic frustration by 10 when I hear "experts" say similar things about the new CDC findings.
I want to smack them and say, "NO progress is because of hard work and commitment!" I'm thinking the government should have to look the millions of frantic moms across the country eyeball to eyeball and then tell us why our children don't merit funding.
So true! Blood, sweat, tears and piles and piles of money ...
And miles to go...
Simply awesome, JU! Once again you captured the essence of being a parent, a mom of a child with autism. Your eloquent writing is such a gift. Thank you for sharing and for being an inspiration to so many. Jack is one lucky dude and now he is showing you the payoff. Go Jack go!
ONE day at at time, One blessing at a time.
Our grandson was severe autism as well and at age 10 we lost him (3 years ago) to the flu. I miss him and life remains with a hole in it.
Oh Laurie ... I'll be sending love and prayers your way this holiday season especially. I hope the happy memories can bring some peace.
Thank you for the reminder about how precious every single day is. (I'm going to hug Jack extra tight right now...)
Encouraging story, Judith. Thank you. I wonder just how many parents get the same nonchalant delivery of the diagnosis news. I remember in our case it wasn't on a memo pad, but the Developmental Pediatrician simply said, "...in fact he has autism." Then turning to the nurse he said, "...go get me one of those autism take home packets..." That struck me so weird, still does...
Judith- I love you more and more every day...thanks for being a graceful advocate for Jack and the rest of our kids... You truly are an inspiration :-)
Your story is great,Well im a single father of an autistic son, hes 10 right now and diagnose with severe autism,Hes mom left us cause couldnt deal with him.I cry sometimes cause i dont know what will become of him as he gets older,Hes been very agressive and hes ben given all this medicines like clonidine, abilify and most recently risperdal.Hes got no verbal language and i wonder if he will ever get better.His neuro really hasnt help much and i feel there is nothing more i can do if he has severe autism.he does go to the restroom by himself but has to lead me to the kitchen when hes hungry n also brings me a cup when hes thirsty.I dont know where else to turn to
You nailed it. My feelings exactly upon reading about the CDC report - and my feelings toward my daughter's diagnosis.. I, too have a daughter with an ASD diagnosis (October 30, 2009). I wrote a similar post on my blog, but yours was far more eloquent!
I love the video, He is a beautiful boy!
I'm so glad so many can relate to my rambling thoughts here. Thank you for letting me know I'm not the only one who has experienced this ..
@Mike - You sound like a really loving dad who has his hands very full. Do you have any support where you live?
Four years ago my Jack received the same diagnosis. He is also doing very well. Thank you for sharing your story.
I am a writer. The best compliment I can give you is that I wish I had written this post. Bravo.
They just don't get it. The bulk of the "1 in 70 boys" are still young. Politicians don't understand what is coming: a tidal wave of special needs adults with no one ready for them . . aside from us, their parents . . whose visions of retirement now include a 35 year old son living with them in their condo in the Florida Keys.
I, too, have the red mountain buggy in the garage and the beautiful young boy . . and a different, yet equally "charming" neuro who said "when I write autism, you'll get the most services." Well, it's autism alright. And I didn't go back six months later so they could tell me the same thing again. Once from his mouth was quite enough, thank you very much.
Thank you for this post - found you via Autism Speaks' Facebook page. My son is 8 and was given an ASD diagnosis last year. The developmental ped didn't even tell us. She just wrote it in her report and we were informed by the neuro-psych who just wanted to put him on anti-anxiety meds. While I love the docs we're currently with, there's still no coordination between them and we're still awaiting some testing (one year wait will be up in Feb). We also struggle with family members who just think I should be a better parent and let him be a boy. On the positive side, he has made much progress in the last year and our behavioral therapist has given us several tools to use. Thanks again for writing this and Merry Christmas!
As the Executive Director of a non-profit Day Activity Center for Adults with Developmental Disabilities, I sooo appreciate your words. It's always sobering to hear how parents "found out" about their child's DD. I just hope you have respite care available to you so that you may keep Jack at home with you as long as possible. Utilize your school district's Special Education programs as long as you can (usually to age 21) and then look to them for referrals to Adult Centers. Happy Holidays to you and your family and especially to your sweet boy, Jack.
Nathan is still going through testing but ... I'm almost certain he has Autism too... he has so much going on already and I just feelin like he doesn't need THIS on top of it
Yes, hope. Hope, even when the doctors, the diagnosis says otherwise. Hope.
@Moonnstar Mom .. Please check out the 100 Day Kit near the top of the blog. And e-mail me .. please!
autismville at gmail dot com
xo
Judith
Thank you for sharing this. My two-year-old daughter was diagnosed in October, and we're muddling through day by day.
I'm just becoming aware of all the other mommies out there, such as yourself, who take the time to share their experiences via the blogosphere. Each time I read a post I feel less and less alone.
And can I just say how great it is that your little man runs to the bathroom by himself, and that his speech is improving? Little things to so many parents, but I can't wait to celebrate those moments with my Chloe...whether she's three or ten when they come.
Hey Mom!
I know you must have felt really surprised when you found out that Jacky had autism. I know sometimes it's hard having Aspberger's, but sometimes I like trying to see things from Jack's point of view. Maybe you could try it sometime!
Love,
Amy Kate :)
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