Phonics for a child with severe speech delay and SPD?

[Aoife]

My 3.5yo DS has a severe speech delay. At 3.5 he still is unintelligible 90% of the time. Cannot say compound words and only has the ability to say maybe 4 2-word phrases. He also has severe SPD and a severe feeding disorder as in he just doesn't eat and relies many on a liquid diet. He is in speech, OT and feeding therapy once per week. He has some interest in reading as he sees big brother doing it and I just would like to be prepared as he nears 4yo.

 

In your experience which program is best suited to a child like this? I have AAR and that was bombed and he knows what the letter is but just can't say half of them. I am thinking I am going to need something more specialized then just what I have on hand (saxon phonics, LOE). I want to help him with his speech and his reading/phonemic awareness as much as I can and I am scared that he will not be able to learn to read like he wants to until he's much much older because of the speech holding him back.

 

This child LOVES books. He sleeps with them (literally) clutches them everywhere we go and will sit and look at them non-stop through the day.

 

I have heard of LiPS, Barton and such but I am so new to all of this I just don't know what is good for whom and what their strengths and weaknesses are. :tongue_smilie:

[craftyerin]

I don't think I would start phonics with a child like that. I would read, read, read to them, and wait another year or so to begin teaching them to read.

[Amirah]

My 3.5yo DS has a severe speech delay. At 3.5 he still is unintelligible 90% of the time. Cannot say compound words and only has the ability to say maybe 4 2-word phrases. He also has severe SPD and a severe feeding disorder as in he just doesn't eat and relies many on a liquid diet. He is in speech, OT and feeding therapy once per week. He has some interest in reading as he sees big brother doing it and I just would like to be prepared as he nears 4yo.

 

In your experience which program is best suited to a child like this? I have AAR and that was bombed and he knows what the letter is but just can't say half of them. I am thinking I am going to need something more specialized then just what I have on hand (saxon phonics, LOE). I want to help him with his speech and his reading/phonemic awareness as much as I can and I am scared that he will not be able to learn to read like he wants to until he's much much older because of the speech holding him back.

 

This child LOVES books. He sleeps with them (literally) clutches them everywhere we go and will sit and look at them non-stop through the day.

 

I have heard of LiPS, Barton and such but I am so new to all of this I just don't know what is good for whom and what their strengths and weaknesses are. :tongue_smilie:

 

i am in the same boat as you my son is a little over three can say 3 words that makes sense and alot of baby babble. he also loves books and "reads all day and night" they think he is low functioing ASD not sure we still got a 1.5yr wait for diagnosis. he does know and recognize all of his letters and sounds except x and z. we are teaching him sign and holding off on phonic and any schooling outside of some montessori stuff at home at least for another year( when he will get speech, OT/feeding hopefully). we are reading tons and hoping this will give him some time to pick up.

 

my opinion is (and i am no expert) wait and let his speech catch up. if he loves books and you keep reading to him and give him access to books he won't lose the love of reading. i think it would frustrate him to try to do phonics or something.

[PeterPan]

There's a technique for working with totally non-verbal children, and the name right now is totally slipping my mind, sorry. I've mentioned it before, and it will come to my mind later.

 

http://forums.welltrainedmind.com/showthread.php?t=265535&page=3

 

This thread is close, but I didn't mention the other program. I'm sorry, it was some lady from India and her son who was non-verbal into adulthood and how she taught him. There are videos demonstrating it online. Basically, if the non-verbal continues into adulthood, you use the alternate forms of interaction. For instance you put two letter tiles in front and ask him to point to the A. So he's giving feedback without speaking. It can be done.

 

Because he's young, I'm gonna back up and ask about the speech therapy. Have you heard of PROMPT? The Deborah Hayden video is available on youtube. Check into it. Huge, huge changes for us.

 

I got AAR pre- to use with my ds3.5. We've done 4 weeks now of it alongside MFW K5. We've been doing PROMPT for almost 2 years now, started right as he turned 2, so we have more speech. However she warned us not to use letters he can't say correctly. I totally rearranged AAR pre. Her Ziggy activities are not done in a logical fashion to build for a SN dc, sorry. I love 'em, but they just aren't. The entire program has to be reorganized and rearranged. Also his SLP said to start Earobics with him. I have it and just haven't started it yet.

 

In your case, I would do some checking into PROMPT. Also look at flax or fish oil and some of the nutrition options. There's a very active apraxia yahoo group. If your SLP hasn't labeled it apraxia, well... I guess don't even get me started. What are they saying it is? Sounds like there's a huge differential between his development and his motor control, and that's apraxia whether they call it that or not. Sometimes they'll call it an articulation delay and pansy around, saying they'll call it apraxia when he can talk. A therapist who treats a lot of apraxia can show you the praxis without any speech. And because what you're talking about is severe, I would get a certified level or instructor, nothing lower. I drive 2.5 hours each way, and I'd drive a week each way. You could drive however far it takes, stay for a week of intense therapy, and go home for 3 months. It's that potent.

 

Well whatever. I would pursue the speech thing first and make sure of what you're getting. My ds learned his alphabet in speech therapy, so the next thing was just to add the sounds and do activities. She inventoried his learning styles along with one of the motor control tests, so now I have the information that he's dominantly a kinesthetic learner. So now that I know that, I try to bring everything in using that channel.

[PeterPan]

Hallelujah, I found it!!

 

http://www.halo-soma.org/about_soma_tito.php

 

It's called Rapid Prompting, and you use it with non-verbal autistic children, etc. Surf around that site for videos. I met a mom who did this with her then preteen ds who was totally non-verbal, and it was amazing, allowing him to stay on grade level and even show his giftedness. At that point when I met him he was starting PROMPT for speech therapy, because he wanted to be able to talk.

[Amirah]

I just read your blog. Are you using Montessori for language? Because I would think even if he has speech problems the pink, blue, and green series would be ok. Not 100% on this though. Are you In the Montessori homeschool group? You can ask there. A few ladies have ASD kids and they been helpful when I asked about similar stuff. I'm setting up to do primary now

Edited August 11, 2012 by Amirah
Typo on the thumbs down typing on ipod

[Aoife]

I am not looking to start phonics now per say more of just reasearch and fiind so I can then budget for it :lol: He is so so smart ( he can do huge adult jigsaw puzzles even) so it is just his speech that is terribly behind. He's been in speech since 18 months old through birth to three and since he turned three he has been in private speech and though he has made vast improvements he is still severely behind. I looked into prompt before but I couldn't find any therapists that were even moderately close to me :(

 

I would love to find something that I could do here at home with him that would help supplement him.

 

thanks for the advice and the link I will be looking through it all again later when the kids are more calm :lol:

[PeterPan]

The brain is putting all his speech energy into fine motor because he's not talking. My ds was very similar, and it didn't chill to we were able to get him talking more.

 

People come in from multiple states away to use the therapist we use. They drive in, stay for a week, and leave. Often they leave with a kid who is talking.

 

An hour with a PROMPT therapist is worth more than weeks of therapy with non-PROMPT. Just sayin. They can show you what to do and you can do it at home. That's why it can work to come into a therapist from out of town, use them, and leave.

 

Whatever. I know everyone's position is hard. I'm just saying you want fish and I'm showing you how to fish. This isn't a problem that goes away. So in your case I'm saying I would buy travel to a better speech therapist and hotel rooms instead of curriculum. It's more important. You get that speech working, and the phonics will resolve itself and be a lot easier.

 

BTW, I'm sorry if that's nudging too hard. I know sometimes we need time to sort things out and decide if something we view as expensive or impractical or whatever is actually necessary. I waited a long time on a neuropsych eval for my dd, thinking the same thing. Some people here nudged me (pretty hard frankly), and I finally did it. In retrospect I wondered WHY I had waited so long. So I'm saying PROMPT is the same thing. Might seem really impractical or out of reach, but it might be something that's worth being nudged for. Sometimes you just have to sort out if that big reach is really necessary (travel multiple states, stay in hotels, etc.) or if it's a problem that's just going to resolve on its own. In your case it isn't resolving, so it's worth looking at those more extreme options.

 

BTW, if you wanted, I'd be happy for you to stay with me if you ever came this way and wanted to go to mine. I don't even remember where you live. The therapist we use is BEYOND awesome.

Edited August 11, 2012 by OhElizabeth

[Aoife]

is prompt still effective with a child who does not have apraxia of speech though? He has been eval'd 3 times once being for apraxia and he does not have that as far as all of the evaluations have said. His main driving problem is his SPD and oral aversion to sensory input thus the severe feeding problems ( doesn't eat most foods)

 

Unfortunately Prompt just really isn't an option for us as his feeding therapy is the most important factor right now because he will continuously bring himself to the brink of starvation in his food refusal. Luckily where we live we have one of the best feeding clinics nearby and he goes weekly now and then come October he will start his week long intensive daily feeding therapy. We are doing what we can to try and desensitize him orally and get him used to saying different sounds ( he does not like the way they feel to say them) as well as slowly trying to introduce foods other then milk and nutritional shakes. Yeah this fall is gonna be crazy here with all of that and a new baby coming :lol: If prompt would still be a good idea for him anyhow I will of course try and get him there. I looked and there is a therapist in Cincinnati which is where my grandmother lived (she just passed away 3 weeks ago) and if we haven't sold her apartment yet I could look into going there next spring for therapy if needed.

 

 

Thanks so much for the advice :D pushing is always ok if it is the best interest of a child's needs!

[eoffg]

Aoife,

Given his love of books, perhaps you could take an opposite approach, so that he may become fluent in reading and writing, before he becomes a fluent speaker.

Where for children with oral apraxia, the written word provides them with a far greater ease of access to language, than speech.

While the traditional approach to confirming whether a child knows a phoneme or word? Is to have them pronounce the phoneme or word?

With oral apraxia, the problem is not with knowing the phoneme/ word, but with pronouncing it.

Where crucially, this should not be confused with verbal apraxia, and a difficulty with recognizing the phonemic segments that form words.

So that I might suggest an opposite approach, where instead of having him pronounce the sound of the phoneme/ word that he is looking at? That you pronounce it, and then he identifies it as written on the page?

Where this will still confirm his recognition of phonemes, phoneme blends and words.

But puts aside his difficulty with pronouncing it himself.

So that he can discover the written word, regardless of his speech difficulty.

 

Though it is of considerable concern, that 'oral hypersensitivity' isn't currently recognized within the definition of oral apraxia?

[PeterPan]

The lady you found in Cincy, Tara Nokia-Kohler, is the one we're using. :) Bop her an email or call her at some point and just pick her brain, kwim? She talked with me for an hour on the phone before I ever went in. Feeding therapy + apraxia is what she does. We didn't have that problem but evidently, as you're saying, there's overlap. Her site is: http://www.teachtofeed.com I'm not saying to undermine what you've already got, because it sounds like you've got a good place with a lot of experience. If you're wanting to know how they connect and whether PROMPT would change anything, that's what she can answer.

[Aoife]

Ok so I did some more digging and used some of my Mom's connections up at UPMC pittsburgh where David Hammer has his clinic which specializes in childhood apraxia of speech. This guy has been treating and researching the disorder since the 70s and uses a method very similar to prompt which predated prompt. Not to mention he's 6 hours closer to me and in network for our insurance :lol: Our game plan for now is to keep him in his normal speech therapy and feeding therapy down here and augment with workshops specifically for apraxia up in PGH.

 

Even though the SLPs down here did not think he had apraxia it took my mother's friend from children's a min of listening to him to say she was near 100% sure that is what is going on here. I am going with the likely hood that the SLPs down here (WV) just have never encountered a real case of apraxia before and gave him the blanket diagnosis of severe articulation disorder because it was the closest fit for him.

 

I am feeling a bit better now because I was like so unsure why his progress with speech was still so slow and why at 3.5yo he is still struggling to make a large majority of the sounds needed for intelligible language.

 

She also said we can go ahead and start LiPS at home with him because every little bit helps and it is a great program for kids with apraxia of speech. So I went ahead and ordered LiPS and will start soon as it gets here. I also being the over researching dork I am ordered a few books off of amazon on apraxia so I can be more armed with the knowledge I need to help his as much as I can.

 

 

Thank you soooo much ladies for your help! It means a lot to have a bunch of experienced mamas to help you out when you are clueless at times!!!:D

 

ETA: I am also still going to send an email over to the Prompt therapist in cincy as well cause it can't hurt to have more options!

[PeterPan]

Ok, I hate to contradict, honest, but I wouldn't spend any money on books on apraxia OR Lips until you've gotten a full eval by someone who actually knows apraxia. You don't *listen* to someone to determine if they have apraxia. Apraxia is motor control and you can see it and demonstrate it when you know what to look for. When you get an eval by someone who actually knows apraxia, you'll see.

 

You're probably aren't even going to *need* Lips if you get effective speech therapy, and the therapist is going to want what you do to coordinate anyway.

 

Ask the therapist in Cincy whether she has heard of this other man. I'm sure there have been people who have been in parallel tracks discovering things that work, kwim? It's not like one person has the market on the ultimate. However I will tell you Tara has stories of kids who come in for a week of intense therapy, and they come in non-verbal and leave talking. It's pretty incredible. Your dc is plenty old enough, and there's nothing cognitive holding him back. If it's possible to do, it might happen.

 

Like you're seeing, a lot of places are willing to treat apraxia. When they don't know how to treat it well, they just give it less specific names like articulation disorder. Burns me up, because it keeps people from researching for themselves and making that choice. And there are lots of therapists who just do Kauffman (which probably works for some kids) and don't question whether it's adequate. It's sort of this entry-level therapy mentality, where they just do what they were taught to do and don't specialize or ask questions. So then you have kids sitting around in therapy that isn't working. It burns me up because ONE WEEK with a better method can change a child's life, ONE WEEK.

 

All that matters are results, kwim?