Well, I finally realized why I'd been feeling so negative lately. Our appointments with the dev. ped. were coming up, and I know deep down that we wouldn't hear "mild autism" or "sensory integration problems", which is what Early Intervention said originally.
So we went in to TX Children's Hospital, yesterday and today. B. and G. dealt with it amazingly well. G. was especially excited by all the fish tanks, and Brendan was just happy to run around the waiting room with a big grin on his face. Everyone kept commenting on how calm and happy they were (they were there on different mornings, but we got the same comments). Mom and Dad weren't so calm, but we did okay, considering. We always seem to get along best in real high stakes situations.
The doctor saw G. first. She (the dr.) has a very nice manner, relaxed and encouraging. Even though G. and B. basically couldn't do much of what she presented them with, she still said lots of positive things about them. In the end, though, she said that she believes they both have autism, and fall in the category of mental retardation. They each have their areas of strength, of course, but overall her assessments of them were similar.
She did say that they have lots of potential, and she's impressed with how much expressive language they have already learned. When she was observing G., he kept making his little toy man kiss his toy duck, which I thought was pretty impressive (not to mention very cute).
Her diagnoses weren't a surprise for me, but I still feel like I'm grieving in a way. It's one thing for me to believe they are delayed and autistic, it's another to have a specialist tell me they definitely are. On the other hand, we now have letters of medical necessity, which we hope will force the insurance company to pay for private therapy.
They had to get blood drawn, to check for genetic anomolies. G. was relatively okay with it, except for the actual stick. B. was so mad about being held still that he didn't even react when the needle went in. It took him a long time to settle down. They both fell right to sleep on the ride home.
We are supposed to schedule MRI's, and also speech and OT evaluations. For the MRI's we have to go back to TX Children's, but I'm happy to say we can do the other evaluations and therapy practically in our own neighborhood.
I feel like this post sounds kind of detached and cold, but I'm a bit burned out after the last two days. Telling my parents was the worst part, although by the end of the phone call we were all just talking about what wonderful happy boys they are, and my mom had basically convinced herself the diagnosis is wrong. I don't blame her. It doesn't matter that much what the label is if they are happy.
Thank you to everyone who's posted such encouraging and helpful comments.
3 comments:
Doc appointments are hard. Especially for a diagnosis! Don't fret a minute about feeling detached because you have to be in order to get through those things.
I know its just a label. You know it is just a label. But even during those stressful times, do not let yourself forget that. Especially the mental retardation part. I hate it when I hear that said about young autistic children. I really don't understand how a doctor would feel they can determine that at this age when there is autism involved.
There is much debate about IQ testing and autism. There is no doubt that our kids don't take "standardized" tests. That doesn't mean that they don't know/can't know the answers. Your kids are young and I don't want you to take the MR label and think that they can't go far.
Hey. It's okay to feel detached right now. You need time to let everything sink in and it does feel like you take it up to another level when you go in and get that "professional" diagnosis. Both J&S had the "mental retardation" label lobbed at them too, and I felt more devastated hearing that than I did the autism. But that just means that they don't do well on these tests. Kids with autism have a hard time focusing. In J's case, he couldn't make eye contact which makes imitating what they asked him to do kind of difficult. S. had zero words when he was first seen.
All this means is that labels are fluid and can change. And you need to trust your gut about your boys and what they're capable of learning with time and encouragement. Email me if you'd like to talk.
They are so young. Please don't take the "lables" as indication of their potential. (Even your doctor said they had lots of potential!)
As you note, the labels will help receive therapy/treatment. But beyond that, they are who they are, not some generalized cookie-cutter picture.
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