The other day, I received a psychological evaluation of Abby in the mail. I opened it and read the mostly-routine bits of this yearly update. The words of her autism treatment program supervisor stung, but they're true, so we live with them. "Continues to show aggression and some self-injury.....extreme moods......increasingly obsessive-compulsive......slow progress.........working on rote counting and survival reading skills with difficulty." Ouch.
Then my eyes wandered down the page and what do you know, she has a new diagnosis. It's not like I didn't know it. I've known it for years. But it's still one of those heartstopping, gasp with pain for a moment things to see those words.
Next to her 299.0 diagnosis of autism is now diagnosis 318.1. Severe Mental Retardation.
That's why, when people tell me about their kids with autism who are doing almost anything even remotely normal, the words I say in my head are "My kid doesn't have the autism your kid has. I *wish* my kid had your kid's autism." By that, I mean that I believe there are many (hundreds? thousands?) of disease processes causing the end group of behaviors we call "autism" nowadays. Unfortunately, my child has an extremely severe disease causing her end diagnosis of autism, as compared to many of the kids I see who are diagnosed on the spectrum today. I'm experienced enough as a parent, now, to see that doesn't mean that another parent's journey with a higher functioning child is easy, or even necessarily easier, but I still wish I could experience what they do with their children who can talk and do any number of things for themselves. I hold out hope for all of these children, no matter how seriously they are affected, that someday soon, medical science will find a breakthrough that will give them all a chance to live their lives independenly and happily.
Meantime, is it any wonder I obsess over Ian and his development? Do you know what would happen to my heart and soul if I heard the words "autism" or "severe mental retardation" about another one of my children? I guess I'd get over it and move on, just like I did with Abby, but the scared, dark, buried place in my heart screams out that I would die.
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6 comments:
you already know you'd get over it. fearing it is probably more normal than if you didn't fear it. I pray he's fine...completely and utterly neuro typical.
you & my friend rachel (brightside blog linked from my blog) should really be friends. i've even told her so on more than one occasion - i think i've even had her email you before.
abby & her willie have a lot in common and i know how very much you two would "get" each other.
i love you and only wish the best for all of your family. {{{hugs}}}
Lisa, my heart is truely aching for you today. :( It makes complete sense to me the feelings of abrupt pain, seeing those words in print. You LOVE Abby! You want the best in the world for her, as all mommies do. And just to know that this is the truth of the matter is painful. Many hugs reaching around you right now.
Don't beat yourself up for having these worries about Ian. I think any of us in your shoes would be the exact same way. But, know that I'm praying for strength for you every day.
You have no idea how much I've learned from you over the time of our aquaintance. It is a priviledge to know you. Wishing you some sunshine somehow today.
OJ
Oh, geez, what a rough, rough week you've had. I don't know how you do it, but you DO. You're just all the way "there" for your sweet kids, no matter what they need.
It sounds totally normal to wish for a different diagnosis for Abby, even if it's just one step up on the vast spectrum of autism -- or the omission of that new code that doesn't serve a purpose for you. YOU know Abby is more than a code or a phrase . . . you know the whole story of her life -- the heartache, the love, the small accomplishments, the joy. I'm so sorry the experience spills over into worry about Ian's development. Of course it would. But it sounds like he is right on track with his early Pattycakin' expertise!
I know this is a bit of a ramble with no clear point. I just wanted to send you some hugs and kudos for the awesome job you do as a mom. I hope you can catch a little time for yourself over the long weekend.
Reading the doctor's report sounds traumatic. Almost like the doctor had been hoping things would get better, and now feels that they won't.
On the other hand, doctors can be wrong. I pray that they are and that there is more in store for Abby than they anticipate. And perhaps having the second official diagnosis might be helpful in getting further/better services for her to aide in her possible future improvement.
I'm glad all is well with little Ian. I would love to see a pic of him doing his Patty Cakes!
You seem like a great mom. I always read your stuff on FF...I'm ttc #1 at age 42! Anyway, I believe that you will provide your children with whatever they need to succeed w/what they have.
Your little guy is adorable! Lots of good health & happiness to all of you!
I just wanted to thank all of you for your kind words to me when I was feeling down. You all rock. And Anonymous, whoever you are, I hope you'll come back soon. :)
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