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Discouraged

post #1 of 26
Thread Starter 
I just need to get this out where people might understand.

We had an assessment (first in a year for various reasons) for our autism specific therapy (RDI). I have been feeling like my six year old son has made huge gains in certain areas. I had started feeling like autism wasn't going to be his major challenge in life (he's got plenty of others to select from). I'm not saying I thought he was no longer on the spectrum but I just saw it rosy I guess. I had even shared with the therapist how I felt he was past much of the big issues and etc.

And it was horrible. He was entirely unaware in interactions, talked constantly without even noticing partner response, and on. It was just discouraging and I felt embarrassed about painting a picture for her that didn't at all look like the reality. He has made gains (though they couldn't be seen yesterday) but it just hit me in the face how far there is to go to be able to function. I'm worried we won't get there. I am overwhelmed too with all he's got going on otherwise.

Just down.
post #2 of 26


Those days suck. This is a difficult path to walk...your son is very lucky to have you!
post #3 of 26


I sometimes find my DD isn't herself during evals. It's almost like she knows on some level she's being evaluated. More than once I've had to say "but really, she's not like this usually." My mom said I was like that too, and I'm completely NT. I would shut down and not talk at all. That was so different from how I would behave around people at home.

You know he's making progress and you've seen it. Hold onto that. Could some of his behavior be attributed to his age? A lot of kids on the spectrum act younger than their chronological years ( I know you know that..)
post #4 of 26


Oh, I have been there. After a year of intensive speech therapy (and making some huge strides), at our last (and I mean last) developmental pediatrician appointment our doctor said "OMG, he has a very severe articulation disorder - are you doing anything about this?" Yes, we know. Yes, he gets small group speech 2x a week for the past year and 5 day a week speech in his classroom. She then goes on and on about how he needs one on one (first time she ever told us that). Not once, with my sweet boy sitting right there, did she mention how far he has come and give us any positive feedback. We went from understanding him maybe 20-30% of the time to 50-60% of the time. I think that's pretty impressive. We will hopefully have a new developmental pediatrician soon.

Try not to let it get you down. Your son has made huge strides. You aren't imaging things. He was just off that day. Just like some kids (and adults) freeze in a test, I'm sure some freeze up during an eval.
post #5 of 26


Autism parenting is quite the roller coaster. I've been feeling like my DS has lost strides in the past few days, I think it might be the heat.
post #6 of 26
Or you can take your child (who terrorizes his teacher) to the therapist where he sits perfectly still and quiet--AFTER having a major meltdown in the waiting room.

Perhaps you could send a report from his speech therapist to the evaluator?
post #7 of 26
Sending along hugs! Be strong mama!
post #8 of 26
Hugs Rachelle. I understand.
post #9 of 26


So sorry. I think we all get kind of used to the day to day sometimes and hear/see our kids in ways that start to seem "normal-ish." And then, WHAMMOOOO!
post #10 of 26
So sorry. I do understand. I was so happy seeing improvement in my 21 month old son-and then we were around other kids his age over the weekend that are verbal...

The only word my son has is "hi" and it sounds more like "haaaah". I'm happy he is trying to wave but it's more like flapping both of his hands. (2 things he has learned over the past few weeks)

I have spent the past 2 days crying and worrying. Then I remind myself that he is sooo happy and cute and sweet and I will do whatever I can to help him have a happy and hopefully independent life.

Big hugs and hang in there!
post #11 of 26
Quote:
Originally Posted by AndVeeGeeMakes3 View Post


So sorry. I think we all get kind of used to the day to day sometimes and hear/see our kids in ways that start to seem "normal-ish." And then, WHAMMOOOO!
and big

We, too, have times where I'm all excited for the progress I perceive, and then soon after that I get the big letdown. I understand.
post #12 of 26
hugs, rachelle. these kind of days feel so rotten to the core. i agree with the pp, though, that your his mom, and i can guarantee (without knowing you) that what you have seen in him truly exists. one moment certainly doesn't capture me, and i'm sure it didn't capture your son either... that said, having our kids evaluated never feels good- especially when their snapshot doesn't match yours. sorry.
post #13 of 26
I know just how you are feeling. There are those days I just look at William and think how FAR he has come! That maybe one day I will not have to explain him to people, that they can understand him, that they will not look at us in public weird ect ect. Then he has a bad day, or week, or eval and reality comes smacking me back in the face! That yes he has come SOOOOO far and I am SOOOOOO proud of him but damn we still have so far to go. Some days I just have to sit and think really hard about where we were a year ago and imagine just how far we might be in a year to just get me through that day. So big hugs to you mama!

Lisa
post #14 of 26
Hugs to you

In my experience (I work in the field) kids on the spectrum RARELY test well - since they don't do well outside of their normal routines, and being evaluated is not part of their routine this is just bound to be a difficult and inaccurate snap shot - and does your son have a rapport with the evaluator? If not then again it's not going to possibly capture an accurate picture...You know your child better then anyone, try not to let the "official picture" get you down, although I know that's easier said then done....
post #15 of 26
Quote:
Originally Posted by bonamarq View Post
In my experience (I work in the field) kids on the spectrum RARELY test well - since they don't do well outside of their normal routines, and being evaluated is not part of their routine this is just bound to be a difficult and inaccurate snap shot - and does your son have a rapport with the evaluator? If not then again it's not going to possibly capture an accurate picture...You know your child better then anyone, try not to let the "official picture" get you down, although I know that's easier said then done....
Thanks for that, and all the other mamas who've posted, I'm not the OP but I've been feeling WAAAMMOOOOO'd the past few days. I have another thread about DS being medically approved for SSI, and just knowing that other parents of ASD kids have a hard time getting approved but that my DS was approved on the spot, kinda hit me. Then he got a haircut and looks so much older and so less babyish....his delays and "ways" seem so much more obvious, I'm having a hard week. So glad there's other parents who know.
post #16 of 26
Such a bummer. Big hugs to you. I actually refused our most recent developmental assessment b/c I knew it would be depressing and for us, it wouldn't have changed the clinical picture. It is so hard to try to focus on the positive things we see when the official evals try so hard to elaborate on the negative.
post #17 of 26
Ugghh... evaluations! I find that my son (SPD, language disorder) rarely performs at his "norm" during evals. In his case, he often performs BETTER because it is one on one and he has great difficulty in groups and when there are a lot of distractions around to interfere with his receptive language. So....I will note all these problems and then the evaluator will actually find DIFFERENT ones and say she isn't seeing the same problems I (and his teachers) are seeing. So I often leave evaluations confused...does he really have the difficulties I am seeing and what is with all these NEW ones?????

Hang in there - your son's strides are real. I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.

((hugs))
post #18 of 26
We have unexpected * guests staying with us (for god knows how long) who have a 6 yo. Not only are they able to do all the hyper-crunchy sh*t with him, but he's literally twice the size of VeeGee. It's been difficult seeing her next to him, seeing the developmental gap, not just size. He eats like a horse, and she's sitting there with a tube, while they all "encourage" her to eat her banana pudding.

Last night the kid called her a spoiled brat at the dinner table because she was crying about having to take a bite of pudding. It was a lucky thing that his momma took him from the table . . . .
post #19 of 26
I hear ya!

We are right in the middle of some HUGE testing for Miss Kat and I am TERRIFIED that it is going to show no progress in the last year. Logically I know she has made progress, but I'm afraid the tests won't show it and somehow the year will have been a waste and maybe she'll never catch up....
post #20 of 26
Quote:
Originally Posted by kme View Post
I often wonder why more evaluators don't go to the kids' normal environments and observe. I think they would get a truer picture of how the child is functioning.

((hugs))
Yes! I've often wondered why more evaluators don't go to the child's environment instead of making them come to a new location. About a year ago, we went to a particular evaluator's home (she has a home office), but she kept us waiting for about 20 minutes even though we had a confirmed appointment. DD didn't make a fuss about the wait. She sat on the couch and waited patiently. I was so proud of her. But when the eval started, DD refused to play with the person. I totally understood that DD wasn't in the mood anymore after the long drive to get there then having to wait some more for the evaluator to get ready even though we were the first appointment. The evaluator made this horrible comment to me afterwards, "well if I hadn't seen her before I would have thought she was hopeless." Say what?! I couldn't believe she would say that about my very smart, verbal, funny child... As soon as those words came out of her mouth, I decided that was it. Never going back to her for an eval.

Quote:
Originally Posted by AndVeeGeeMakes3 View Post

Last night the kid called her a spoiled brat at the dinner table because she was crying about having to take a bite of pudding. It was a lucky thing that his momma took him from the table . . . .



I'm glad the mom took him from the setting.
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