Parents w/ low functioning kids - what skills to focus on ?

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Hi,

My son will be 4 in a few weeks' time and has just started an intensive intervention program. Developmentally, he is between 12 to 18 months old, depending on the skill domain we are talking about. His gross motor skills are pretty much the only ones that are age appropriate.

I pulled him out of preschool because he was making NO progress whatsoever, and they wanted to push him out of the autism specific preschool class and into a non-cat classroom for children with intellectual disability. Long story short, they weren't going to do that to MY kid, so I pulled him out of the public system and into a private program. This is very expensive, to say the least, but it is the only shot my son has of ever learning to talk or ever becoming independent, since the public school let him down very badly.

At intake, the agency conducted an assessment and found that he was severely lacking in language (no words at all, just babbles the same consonants over and over again), and severely delayed in fine motor (developmental age 12 months) and cognitive skills (developmental age 9 months). Language is at age 7 months.

So, we came up with programs to address fine motor delays and cognitive delays. However, when it came to dealing with the severe language deficit, they told me that, rather than focus on developing verbal language, they would, instead, get him started on an augmentative communication form, mainly ASL and the IPAD.

Basically, they told me that they don't want to wait around for him to learn to talk, that they were going to teach him ASL just so he has a means of communication. I am not opposed to ASL, I just want them to work on spoken language, too. So far, they are very resistant to the idea and continue to focus on the ASL, since, with his cognitive delays, the IPAD has not worked out very well. He is now able to use some signs (prompt dependent). His eye contact is improved, but he is not yet motivated to communicate, but the fact that he has gained a couple of signs means that they are not open to discussing working on spoken language.

I am very worried because he is going to be 4 very, very, very soon and I feel like I am racing against the clock. It seems that the general consensus is that there is a window of opportunity for language development, and, if a child isn't talking by 5, then the odds of them talking at all are slim to none.

I just received an email from his program manager, asking about a clinic meeting next Thursday. Should I insist that they work on spoken language in addition to ASL ?

Does this sound unreasonable ? I am panic striken, every time I think that he has just a year to go before he turns 5, and that magical window slams shut.

Please help ? If you have or had a low functioning child with minimal skills, what areas did you / are you focussing on ? Is this a hill to die on ?

Also, he still has no play skills, and is a huge visual stimmer. This means that you can lock him up at Toys R Us, giving him a million options to play with, and all he will do would be to pick up any random object to visually stim on. It is very hard for me to watch, especially between trials, when he is given a short break, and he reaches for a puzzle piece or a shape sorter or whatever and starts stimming on it,

Any ideas / advise / feedback is gratefully accepted.

Thank you all so much in advance for any help you can give me.

Hi there

Your son sounds a lot like mine. Mine is 5, he can physically speak but does not do so to communicate very much.

One thing we've found that has helped is showing him educational videos on Youtube. Vidoes for ESL (English as a second language) often work for autistic kids.

My son learned a lot of words this way. He still does not use them much to communicate except to ask for a few preferred items (mostly food) but we are hoping he will be able to put everything together once he starts talking.

At my son's school, they are pushing PECs (the pictures) which do not work at all for him.

My wife and I even started our own YouTube channel for videos we've started making for our son. You can find the link in my signature.

Actually, augmentative communication is a great idea!! In fact, he will have a higher success rate speaking verbally if he learns how to communicate non-verbally. Sounds backwards, I know, but if you think about it - communication is not just about spoken words. It's about HOW to string those words into sentences that create meaning.

Unprofessional.

My advice: Augmentative Communication!!

Hi Wreck - Gar,

You have some great videos on YouTube. I enjoyed the verbs flash cards and am going to try to get him to watch it. Thank you !

ASDSMom,

I am not opposed to them trying to teach him ASL, but I am worried about their stubborn refusal to work on spoken language now. They do label everything for him, so he is drowned in language almost all day but they do not specifically set out to teach him to talk, nor do they want to require him to talk. They want him to sign, instead. I am all for giving him a means to communicate, first & foremost. But what worries me is that they suspect he has apraxia of speech, too. He has been diagnosed with dyspraxia (which is why his fine motor skills are severely delayed), so the odds are that he is apraxic, too. So, I want them to really urge him to talk, especially because apraxic children really do not WANT to talk as it is hard for them.

I am just worried that he may become reliant on the alternate communication methods, and never really care to use spoken language, even if he can. Furthermore, with his fine motor delays, I don't know how many signs he will eventually be able to use. He is not cognitively ready to use an IPAD yet.

I attended a workshop once and they said the exact opposite. Children who learn augmentatively, are more likely to speak because the transferable skills make this process easier for them to do so.

Thank you for the gift of hope, ASDsMom ! !

Yes this is what speech therapists will tell you because they can make a bucket load of money from desperate parents. My brother and daughter were non-verbal till they were five, after which they started speaking. My brother was not diagnosed with anything but he was labelled intellectually handicapped back in the late 1970s. He probably had autism just like my daughter.

What worked for him was my parents forced him to attend mainstream school and maisntream curriculum. He struggled till he was in upper primary when he started catching up. By highschool he had completely caught up and despite bullying he went on and finished an engineering degree at university.

My experiences tell me the Loovas school of intensive learning for toddlers is not essential. A child will develop on their own terms and exposing them to mainstream activities promotes and encourages them to participate and communicate. I think that's the same message Temple Grandin makes. Certainly work with your child on communication with speech therapists or ABA therapy but don't rely on it. Each child is different. My daughter didn't care for PECS or language videos so we never forced her to watch these. On the other hand other children may respond differently.

The window doesn't slam shut. It doesn't. Your son will continue to learn, take it slowly, calmly. It always pisses me off when I hear professionals say that, because I've seen the things my son has learnt since that age, amazing things. It's depressing to hear that when your child is young and it's just not true.
On the issue on augmented communication... I also think this is what gave my son the motivation to learn other ways to communicate. Pecs and then much later the iPad. He still relies on his iPad for communication because it is easier for him than speech and people have trouble understanding him without it. Not family though, we understand him better. He has some basic speech now, had none when he was 5 and that window supposedly slams shut... And he's gaining more every year. Until he learnt the benefits of communicating, basically letting us know what he needs, wants... He wasn't learning how to speak. So if they want your son to learn the power of communicating, it's makes sense to teach him a way of communicating that is easier for him. If he has picked up a couple of signs, then signing is probably easier for him than speech. If the speech is going to come, it will be helped by the signing. He has been surrounded by speech since the day he was born and hasn't picked it up yet, the signing may be the link he needs to understand the whole point of communicating.
The great thing is that he is always going to be surrounded by people speaking, the education is constant. Just keep speaking to him, telling him the names of everything, actions etc... the way you do with a baby.

Anyway, I've rambled... Just my point of view. The one thing, I'm positive of though, is that the window remains open. Don't give up hope!

Double post

Cyber Dad, I find your POV very refreshing. Early Intervention is pushed as key, and, I am sure it is, for MOST kids. But for children like my son who make no progress with EI, the situation goes from bad to worse because the "experts" then take a dire view of their prognosis. My son was labelled the most awful things and I was told "not to expect much from him". It is just so easy to dismiss other people's children ! Well, Karma does have a reputation as a female dog ... so good luck to all who dismiss my child with a nonchalant wave of the arm.

Can you share your daughter's language development past the age of 5 (when she was still non verbal) ?

Miss - Understood, as always, it is nice to hear from you ! You never fail to make me feel better about my kid. Thanks, as always, for chipping in.

I am not all opposed to ASL but I just wish that they would have sound or word approximation goals, in addition to ASL goals.

Be glad they are not pushing PECS! They just ended up a total mess on the floor.

They are actually ANTI PECS ! ! They told me quite frankly that if I wanted a team that would work on PECS with him, that I would need to find a different agency.

This rigidity on their part also worries me quite a bit. Every child is different, and since many kids on the spectrum are visual learners, he may benefit from PECS. We won't know until we try. But it is early days yet, and I have hope that he will progress, given enough time and intense intervention.

I also probably just need to keep on and on and on about having word and word approximation goals.

The lack of non-stimming play is concerning, more so than lack of speech at his age. Are there any parents here with kids who didn't play at 3 or 4 or 5? Does your son line things up? Therapist would probably say that is evil autistic play, but I consider a level up from visual stimming play.

I heard that a lot of therapists set 5 or 6 as some critical age after which development is limited, but that doesn't seem to be true from my observations of other low-functioning autistic children who are developing speech beyond that age, or in the case of apraxia, typing in their teens (independently, not facilitated).

Did you ask why?

That is a HUGE concern of mine, too. When he is not engaged, he either stims visually on objects at hand OR he watches trees / flags etc fluttering in the wind. Or he would sign music over and over and over again, although he cannot say "music".

He does not line objects up at all, he prefers to stim on them visually. The only "play" he has is the play he does on playground equipment when we take him there. AND, he loves to swim and jumps into the water when we are at the local swimming pool. He just seems to dislike books, laptops / iPads etc, and isn't into toys at all.

This is similar to my son. He likes to watch videos, mainly music and educational stuff like the alphabet and numbers, seems like he is always counting 1-100 or reciting the alphabet. For a while he was into books but it was mainly number books or he'd just be looking at page numbers.

My son is not interested in toys much. He will pick one up and play with it for a minute every once in a while, maybe one a month if that. He never lined up toys at all. He was into spinning stuff for a while, looking at ceiling fans, but that has resolved.

I tried Ipad and video games, he's not really interested and doesn't really get it. He just watches the screen and likes to hear the sounds.