Gifted Issues Discussion homepage Forums Twice Exceptional Anyone with child that has Apraxia of speech?

I'd say that that is a matter of course when dealing with gifted/autistic-- because most people who have autism also have cognitive delays, the gifted/autistic combination is rare, especially when you get to a kid whose giftedness is really out there.

At some point I looked at the statistics and concluded my DS's combination of gifts and deficits is somewhere between 1 in 25,000 kids and 1 in 50,000-- which means that none of his teachers or therapists will likely have encountered one like him in their career.

I will say that it *is* possible to find people to help; but as you note you may have to work hard to find the right people. We have found some people who were flexible in their approach from the beginning, and some who became flexible as they learned to understand DS. But yes, we have had to do a lot of explaining.

As for the 1/2 hour eval: not remotely appropriate. I would expect about 5-6 hours, including a complete ADOS, Conner's behavior checklist, and Vineland adaptive skills questionnaire. They didn't do their job; you can call them to find out why not, or you can seek an evaluator who will do the job correctly.

Hang in there,
DeeDee

So today's evaluation was definitely a step in the right direction! This therapist was new at this place, only started couple weeks ago but is an experienced, retired therapist who does it part time and clearly enjoys her work. 4 questions about his eating habits and watching DS eating banana was enough for the her to see there's definitely something off with his mouth and the way he eats and talks. She said she hasn't seen enough to pinpoint the reason but it's either tactile (not wanting any food / tongue touching the back parts of his mouth) or motor problems, in which case the hands and other coordination problems could be related. It could also explain why he does not want to use utensils and does not want us feeding with utensils because then he's losing control of where exactly he puts the food in his mouth. When he's feeding himself with his hands, he keeps it all upfront (kind of like a squirrel) or when he's eating banana, if I make him to take a bigger bite, he'll use his fingers to push it aside and doesn't use his tongue to move the food around. The tongue thing points more towards motor issues.
When he makes sounds, the simple letters names and phonic sounds he makes there in the right places in his mouth but when he starts saying words and sentences it's all produced again only in the very front part of his mouth. FINALLY someone noticed what I've been seeing all along!
So, independently of what the school therapists will be doing, we'll start seeing this lady as well and work on the feeding and oral issues to see what the problem really is. And we might get DS4.5's OT check out the hand mobility issue to see what she thinks about it.

So, as I said, definitely a step in the right direction!

DeeDee, those are some interesting statistic data!

I think depending on how things develop in the next year maybe two, we'll seek out another diagnostic evaluation if we see the need. He is supposed to be re-evaluated by the same people in about 8 months again so I am interested in finding out how that will play out given the initial diagnosis.

hi MK

LOL also had a few eating issues with my DS, who couldn't even blow a bubble or spit incl spit OUT gum/food/anything in mouth oh until maybe a year ago? Blowing bubbles came first. He was also very much a talker by then as well... never did learn why the blowing/spitting thing so difficult and if you see as issue and learn why? PLEASE share I'd like to know, even though every kid different...

ok, so I DID mention bubbles/spit thing to School OT- who very clearly stated it was NOT a school concern, it didn't impact his ability to learn curriculum etc, OT stated they did NOT do anything for oral eating etc type OT issues- she did say it was an OT issue, just not something she could work with DS on. *ST is one who gave me ideas for helping him...

Eventually, he got better with this. He still sucks at spitting out toothpaste, it sorta dribbles down chin? idk. if that is the only issue I don't care so much. I'm no longer concerned as much that he will choke on something b/c he can't spit it out when needed (he actually did do this and i had to pop it out for him, it had been lodged as evidenced by the piece of food flew across the kitchen!)

wow! deedee! those are amazing stats!
thanks for sharing them! our kids really are "unique"!!!

and probably why people don't see my DS as aut, because his intelligience and compassion, is what they pick up on so quickly,

and the general public incl many public school teachers and even yes I think- doctors- think of autistic ppl w/ low intelligience and no empathy etc

and it is very sad that ppl are so archaic in their thinking/knowledge...

yep, we've had couple incidents! He can't spit anything out either (or blow bubbles or any of that) so I have to watch for him getting quiet and his eyes popping out of his head to know when he's having trouble with food in his mouth! And when the few times I stuck my fingers in to dislodge the food I'd end up with deep bite marks. lol ... not intentionally but he just has that reflex ... something goes in - he BITES! and people wonder why I keep obsessing with not having anything small that he could put in his mouth around him even though he's already three. Fortunately he's finally stopping to chew on everything so hopefully I'll be able to relax a bit and he'll be able to get that stuff out of his mouth himself!

One of the reasons why I did go with the private eval was because I knew that the school therapists only really look at things that are an issue or may case an issue eventually at school. I feel like I finally have a little victory here! The big reason why I initially contacted Early Intervention were these same issues. My biggest concern wasn't the social part or the lack of speech itself ... I kept telling everyone "I think there's something wrong with his mouth and his hands!" The rest I knew can come and go with age (already having experience with the 4.5 year old who was a total disaster at the age of 2-3.5 and now has very few PDD issues that impact his life). It was the physical issues I couldn't figure out and finally feel like we're getting somewhere!!!

Now a "what would you do" question. Do I share the results of the evaluation today with the school? Or do I wait till I know what they pick up on and what they plan on doing??? I don't want them to think I don't trust them but I also don't want the rediscovering the wheel all over again.

Do keep in mind that they are back-of-the-envelope data done my me (NOT scientific), derived from % of children who have Aspergers and % of children who have IQ of my kid...

But I did find that thinking about it this way helped me be more compassionate to the professionals who were often baffled by DS. They were flying blind much of the time too.

DeeDee

I just wish they would admit it! lol The therapist that connected with DS3 the most was the one who openly admitted that she has NEVER met a child like him but she was very open to trying anything and everything with him to get him engaged on his level. And he was quite happy to see her every time!

I think the problem is that most therapists when they see a child with any form of Autism who does very smart things they think of those as splinter skills, so I've been told "oh, this is quite normal in kids with Autism" ... what they don't understand is that I don't believe he has ANY splinter skills. He's above his age in many different areas, not one or two or three special skills. And that's where the disconnect comes from. The therapist he clicked with called him "incredibly smart" and knew how to challenge him.

Often they can't admit it because their experience doesn't include the outliers, so it's hard for them to recognize an outlier when they are faced with one. Yes, DS's strange talents were referred to as "splinter skills" when he was younger. Yes, it drove me crazy; but this misjudgment didn't do him any harm. Over time, the judgment problem has gotten much better as the therapy team has simply had to come to grips with the reality of the academic gifts. They can't argue with the test scores.

All the same, I have to say that I am glad we didn't put the giftedness *ahead* of the disabilities, either. DS really did have a ton of autistic challenges that needed to be worked on, and it was very, very helpful to have our expert team and ABA therapy in which to do that work. It was highly beneficial to spend the early elementary years working on the deficits, so that we are better positioned in late elementary and middle to let him soar. Had we failed to take advantage of those therapies, and just excused his difficult behaviors by saying how gifted he was, everything would be much harder than it is now.

DeeDee

I think of DS as gifted first and autistic 2nd.
He was born gifted.
He reached all milestones early, spoke early etc.

He regressed @12mos. *if he infact is autistic? This is when Autism said "hello".

Like DeeDee, we focused on what were his deficits. His intellect helped him immensely- I don't deny this and we embraced this aspect of him. And still do.

Now he is really just deficit in the Pragmatic Department... he has a wonderful SLP, and then there is life. Life is a wonderful teacher.

*above I said, IF he has autism, because as I've mentioned, even though I am okay with Dx, and we have certainly taken advantage of all the therapies that were open to DS because of that particular Dx-- no other professionals other than the Pysch who initially Dx'd DS has thought he was Autistic.

Only now am fully comprehending that giftedness in and of itself will often present with a child lagging in speech, fine motor,social, etc, and that often these kids are misdiagnosed as "autistic" or "adhd" etc....If back when, I had been told, oh he is gifted, probably the line "don't worry" would have followed, and no therapy in sight other than enrichment- which I did on my own, just type of parent I am believing in enriching a kids life, and following their lead (many Professionals have told me I in fact was doing "floortime" or "play therapy"!! unbeknownst to me! Hey! Whatever works LOL But really that is just the kinda parent I am.

All that said---- I still am HAPPY with the Aut Dx because of all the help that came with it.

His Dx doesn't define him. Or any of our kids. Just like a child who is said/proven to be gifted? That child may still be a high school dropout (my brother!) and never live up to the potential that is there.....
Hugs