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[Mom28GreatKids]

I am grieved that my very innocent question sparked such an argument. It is my hope that admin will remove this thread altogether.

Edited February 6, 2016 by Mom28GreatKids

[PeterPan]

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Edited January 29, 2016 by OhElizabeth

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[Mom28GreatKids]

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[PeterPan]

Some positive/helpful thoughts.  Have you considered kinesio taping?  Our OT used to work in EI and she said they loved using it there.  You cut a 6" strip lengthwise and apply the strips with some tension to their backs, parallel to the spine.  The video is on the RockTape site.  It's cheap, and it's WICKED powerful for my ds.  It's just giving this constant sensory input.  Also, has your OT tried Therapeutic Listening on him?  Is he getting OT? TL is modulated music that tries to work the vestibular portion of the brain to give a deep sensory effect.  Therapeutic Listening is VERY calming and regulating.  If you can get an OT to get you set up (headphones, cds or the app), you could do that before his ST session.  Definitely check into that.  It might be lightning gold for you.  You could do both TL and the tape.  They're just this deep sensory input, so he'd start in a better place, kwim? 

 

Crazy question, but is this a large space or small?  Small spaces can be sort of calming and regulating in and of themselves.  I've seen some therapy places that have these HUGE rooms, sort of a common area.  If that is part of the dynamic, obviously you could change that.  Probably isn't but I was just throwing it out. 

 

Is she doing the breaks after he becomes dysregulated or before? 

Edited January 29, 2016 by OhElizabeth

[Mom28GreatKids]

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[Lecka]

My son is (at 7) too young to do Zones in the sense that it has high language demands.

 

On the other hand ---- visuals are great for him.

 

Locally when they "do visuals" they are not choosing to use the visuals from Zones (Zones is newer and they have got other visual systems that, while not incorporated with Zones, are still very good.) 

 

Visuals are great.  Visuals with emotions are great. 

 

I would ask if she uses PECS cards for feelings, too.  She might think the Zones cards are a better choice for him right now.  Otoh -- sometimes you ask, and they go, "why, I happen to have a little stash of PECS cards, have some." 

 

I don't quite know how to put this..... my son used to be the hardest kid at a practice I had him at.  He was the hardest kid. 

 

Well, we changed practices.  Now he is one of the easiest kids. 

 

Even though it feels nicer to have him at the clinic that has a lot of kids going who have more minor issues, it just feels nicer that way........ it is a better situation for him that he is in a practice now where they have seen a lot similar, and they have seen worse.  They have got tools and experience, that are just not comparable, for the people where their bread and butter is kids who have less severe needs in some ways.

 

They are both nice people ----- they just have a different clientele in some ways, though there is a lot of overlap, too. 

 

I have seen this in general..... you don't want your child to be the highest-performing child, and you don't want your child to be the lowest-performing child.  There are drawbacks to both.  If you have a chance to "move up" or "move down," even though it is mentally hard to do that for a child, it can be better to have them in a situation where they are a bit more in the middle, or if not in the middle, at least they have a little cohort. 

 

I think it is just something to think about, when you have a child who is the hardest client. 

 

I also think, mentally, it can be nice to be in a situation where, just b/c of going a different place, all of a sudden your child is NOT the hardest client.  I LOVE it that my son is not the hardest client.  It is a different mental space for me, and it is much better for me.  Even though -- duh, some of that is just based on a location.  Still -- it is hard to feel that way, and I am much happier now when I know my son is not the hardest client (partly due to his progress and age, and partly b/c my son's agency has a different case load). 

 

But I have seen it be a difference between "trying" things and having a lot of experience with a population such that they are not "trying" things, they are doing the standard interventions for their clients. 

 

I was actually kind-of unhappy with my place where my son was the hardest, though.  It is like ---- they were nice, they were very nice.  But they were not so nice I didn't feel like "they think he is their hard client when they see him."  Like ---- they didn't really like him that much, they didn't have a soft spot for him.  I think they probably saw him on their schedule and thought "oh, not him today." 

 

Where -- when I switched to a place where people had a soft spot for him and enjoyed him, I liked that better. 

 

The first place.... they were not mean, they were nice, but they were not going "oh, I went into this job to work with kids like this" about my son.  Not at all. 

 

Your place sounds like they are a lot nicer and like they have a soft spot for him, which mine didn't have, and that is really as important as any particular program a lot of the time. 

 

Edited January 29, 2016 by Lecka

[Mom28GreatKids]

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[Crimson Wife]

My son is (at 7) too young to do Zones in the sense that it has high language demands.

 

 

Same here. My DD is at about the same level as a typical 4-to-5 y.o. in her language skills. Zones looks like a fantastic program and I think she'll do well with it once she's got high enough language skills. But I wouldn't try it with a 3.5 y.o. unless that child was verbally advanced (which there are some "twice exceptional" preschoolers who probably are).

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[Mom28GreatKids]

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[Lecka]

I realized after I left this place, I should have left sooner.  They were nice, but they were the kind of nice that is not mean.  They were not nice like they really liked him.  Your place does sound good. 

 

I don't think he is too young to name his emotions.  I think his age is very appropriate.  What I mean is ---- I think they are using it in a way that sounds very, very appropriate. 

 

I don't think they are "doing Zones" in a way that is what Crimson Wife or I would understand as "doing Zones" in that there is a manual and it is language-heavy.

 

But the way they are adapting it for him and utilizing the same ideas/concepts sounds very good! 

 

Locally the same kind of thing might be described as "doing PECS" but it could be the same basic thing.  That happens a lot, where it is the same thing but different words are used to describe it. 

 

Just think of visuals as a way to bypass language delays and skip to cognitive understanding.  They help with language development, too.  But they are a great way to connect with the cognitive level that may be blocked by language issues.  If you think he has a cognitive level ---- then he has it, he just needs to have the communication be in a way that is easier for him to understand.   

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[PeterPan]

I think you won't know if it *could* be different unless you visit a different place to see what your options are.  Maybe you don't *have* an option of a place with more experience with more severe cases like this, kwim?  But if you visit them and see a different therapist work with him, then you can compare and say ok, these other therapists had some other tools.

 

I don't think that's just a function of having the training in a particular therapy.  Sometimes SLPs are doing a lot of different things and they haven't really gotten a niche yet, meaning they aren't getting that experience level.  

 

So that would be an option, for you just to visit some other SLPs and see.  

Edited January 29, 2016 by OhElizabeth

[Mom28GreatKids]

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[Mom28GreatKids]

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[Lecka]

So how is the book?  I am not familiar with it, but it looks intriguing. 

 

Otherwise:  labeling emotions ----- this is a vital foundational skill for everything (social, emotional regulation, reading comprehension even, etc. etc.) and it is a theme for pre-school, so it seems really good and appropriate for his age. 

 

Using visuals for communication ----- also seems very good and appropriate for his age.  children have the chance to communicate beyond their articulation level.  If they have any auditory issues, it is a lot easier.   

 

It seems good!  It is the kind of stuff that fits in with language, communication, regulation, behavior, social, etc. so it has a lot of oomph.   

 

It is stuff that was a focus in my son's special needs pre-school program. 

 

It is good stuff up and it can be tied into a lot of areas! 

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[Mom28GreatKids]

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[Lecka]

I get wanting him to be able to do a bit longer of a session, but keep in mind he is young and it is still an age when a lot of therapists are keeping parents very involved.

 

It is supposed to be better for kids when parents can be part of therapy and carry over therapy into the rest of the week.

 

It is really important and worthwhile.

 

There is a saying about how the speech therapist has your child one hour a week, and you have your child for a hundred hours a week.

 

Even if you are not teaching brand-new skills, you are encouraging your child to use skills from therapy.

 

I bet the therapist appreciates you. They like to see their kids make progress with practice carried over through the week.

 

 

The book does sound good! Oh, the terminology I have had to learn to be able to communicate with therapists. I know it by now, but it is hard when they are so used to their terminology they forget that parents don't know what all the words mean. It is a steep learning curve.

 

I will look for it at the library :)

Edited January 30, 2016 by Lecka

[Mom28GreatKids]

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[Lecka]

They are both good books, and they are both nice people.

 

I like books just for information, too, but a kind author makes a book special.

 

I have read around a bit, and for early communication, you do find a lot of resources in the autism books and in the Down Syndrome books. Other than the Hanen book I have seen, I have not been as impressed with generally-written books I have read on children's language, they do not devote much space to it, really. Either they are focusing on more advanced levels, or just talking about different diagnoses and not actual practical ideas beyond the really obvious ones.

 

When you get a book about autism or Down Syndrome, you are not going to spend half the book discussing getting a diagnosis, you are assumed to be past that point, and they have more practical advice, a lot of the time.

 

So I think, go for it!

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[Lecka]

There is a special needs lending library in my town, and I have checked out a Hanen book from it. They are pricey books, I would not pay for one. The book I have read is very good, though.

 

My favorite book has been The Verbal Behavior Approach. It is also written by a nice mom. It is on the specific side, though, and my son was in this kind of therapy approach. It is my favorite book about ABA. My son had very limited imitation skills and very limited requesting skills when we started, though, and I think this is a little bit of a certain profile that clicked for my son.

 

It is the kind of book where your child can have almost no imitation or requesting skills, and you read it, and think "I can do this."

 

Bc a lot of books assume the child has some imitation skills and that if they can label an item or repeat a word for an item, they will be able to request the item. This book is not one you read with a sinking feeling like "my son is not at this level." The Joyce Snow book is like that, too.

 

Like, it is hard to read a book that is assuming "oh your child already HAS imitation skills, so all these ideas for encouraging play will be great." Or the book is encouraging gentle suggestions, and you know your child does not have the receptive language level to understand the gentle suggestions.

 

These are the kinds of books I like a lot now, but my son has very good imitation skills now, and his receptive language is good enough for a lot of suggestions. When he didn't have them, these books seemed very far away.

Edited January 31, 2016 by Lecka

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[Guest Alice112]

Personally, I would give them the chance and see what they can do for him. 

[Mom28GreatKids]

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[Lecka]

For some books you may be able to borrow them from your speech therapist.

 

I have borrowed several autism books from my son's therapist and from a lending library in my town.

 

I don't know how common lending libraries are, but I think it is worth asking the speech therapist.

[Mom28GreatKids]

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[PeterPan]

I looked up the Ittleman book. Interesting premise. It isn't in our library system. Marie, would you recommend it that I buy it? The description freaked me out a bit, as it talks about insurance companies declining therapy more and more. Oh my. That would not be good. What do you think? Is is really practical?

 

Sent from my XT1049 using Tapatalk

I got Ittleman through the library.  The chapter I read (I started at the end) was fine.  To me it was like oh nice idea, similar to things I already do.  But I need to keep reading.  He had enough variants and ideas it was interesting.  Really though, I keep going back to this, but your FIRST order of business is motor planning with apraxia.  Language development is good, and that's what Ittleman could be a nice part of.  But I'm only just now worried about that with ds now that he's 7, kwim?  Now we're going ok, we can SAY all these words, so let's sure we're developing all the language concepts (asking questions, using adjectives, comparison, verb tenses, etc.).  But that has NOT been our focus for the last 5 years.  It as all motor planning, motor planning, motor planning.  And that is NOT a mistake to focus on motor planning.  It takes SO LONG for motor planning to become automatic.  Any sound my ds gets with assistance (the input of the PROMPTs), he takes about 3 years to have to automaticity.  Think about that.  So I'd put ALL your energy into motor planning the speech right now.  And you don't need Ittleman for motor planning, because that's your Kauffman, PROMPT, whatever.  You need the targets, the prompts to help him get them, and scenarios that you use daily to practice, practice, practice them.  That's all.  Ittleman is fine, but it's just not your MOST IMPORTANT thing right now.  Not with apraxia.

 

Oh E I just ordered tape. It should be here Tuesday in time for ST on Wednesday. When would you tape him? Like just before we leave (25 min drive), an hour before? Thanks for the suggestion. I am telling you, it all sounds like voodoo, but I don't care. Lol.

 

Sent from my XT1049 using Tapatalk

Put it on the night before.  Leave it on till it falls off or he pulls it off.  

 

Maybe I can make a video of me applying it to my ds.  I've never done that before.  Might be helpful to see it done on someone smaller.  :)

 

I don't have a comeback on the voodoo, lol.  I mean, OT in general is voodoo, but to me voodoo is when somebody says do all these things and believe eventually something might happen.  With the tape, we're just saying let's give the sensory input and see what happens.  He might turn out to be allergic to the adhesive and have funky reactions.  He might chill out.  Who knows.  But when you get the tape, go ahead and put it on.  No need to wait even for the night.  The tape will usually stick several days.  I started buying the H2O version, and that will stay on close to a week even with him swimming, hehe.  Regular tape doesn't last as long, but you're only using a few inches, kwim?

 

Ok, if I haven't said this or it's not clear in the video, the trick is to apply it with some STRETCH.  You want 25% tension.  So you stick one end, then sorta tug and apply.  The heat of you rubbing it activates the adhesive.   The strips will be 2" wide, and I cut them up the middle, making 1" strips for my ds.

 

Maybe I'll go put the tape on him right now.  He's all whacked out because he had to take pictures for his team.  He did it, but he came home and fell apart.  I'll fiddle with it and see if I can manage.  

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[Lecka]

I have researched a bit in my area. There is a great speech clinic and the lead therapist spoke at the autism workshop I went to last summer.

 

I spoke to her after her presentation, and she said my son would have the same therapy at her clinic as he was getting in home ABA.

 

Bc he was working on wh questions, and wh questions are wh questions.

 

And -- they would, in his case, be working on it in pretty similar ways.

 

There are quality people at both places.

 

For some situations, I do not think it makes sense to get into "who is better" when it can turn out that the same things work whether one person or another is doing them.

 

I think it does matter, really, but I don't think we would be doing better for my son to have outside speech instead of outside ABA.

 

I don't think the people doing outside speech instead are doing any worse, either.

 

It can come down to insurance, though.

 

Also my son really needs the generalizing and that is a drawback of a therapy clinic, and an advantage to the structure he has where they can go on community outings with him.

 

I think the built-in social times at clinics and group sessions (etc) are a huge advantage to clinics and also speech therapists who offer that.

 

But I don't think it is fair to say speech therapists have more success. The quality people often have a background in speech therapy and autism regardless, whether they are from one specialty or another.

 

Like -- to me it says something, if Marie's son sounds like he is doing similar things to what my son did at special needs pre-school.

 

But when they do it there, it is part of an ABA program. But it looks like a speech therapy program. There is not some big dividing line. There can be, but often there is not.

 

You see this with VT also. My older son did what other kids on this board do, at VT, but he did it in OT instead.

 

One or the other does not own visual tracking or bilateral coordination.

Edited January 31, 2016 by Lecka

[Mom28GreatKids]

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[PeterPan]

The SLP *will* start bringing in goals like wh- words, etc. at some point.  It's just not the focus right now.  I do a LOT of that now, now that he's 7.  Like we have the Magnatalk (love!), the Grammar Processing Program, games, listmaking and oral composition with the kindle, etc. etc.  And we're literally doing ALL of those things EVERY day now.  Because he really needs that.  But we spent 5 years focusing on the motor planning, because that was the big issue.  

 

And, frankly, my ds has a gifted IQ.  He has used his kindle to memorize speech.  He masked a lot of his language issues when his speech started coming in, because he was using so much memorized speech.  It has taken this long for the breakdowns to be more obvious.  When you realize ok he really isn't understanding instructions I give that involve prepositions and he isn't understanding verb tenses and conditionals and he really isn't using adjectives in front of nouns or forming questions.  But we didn't REALIZE because he has this 99th percentile vocabulary and this ability to MEMORIZE large amounts.  When he was 5, he was reciting whole paragraphs from Lion, Witch and the Wardrobe!  So he will memorize large chunks of a Beverly Cleary book and then use that to determine correct behavior for a situation, kwim?  

 

Apraxia is a long road, or at least ours has been.  And we've done everything that can be done.  It's just a long road.  We spent MONTHS picking up his jaw (6 months?).  More months pushing in his tongue.  Much longer working on rounding for /sh/.  Then the prompts got so complex I couldn't help him.  This fall he started doing some cluttering, so we're using an app to work on that.  He's not doing that so much now, come to think of it.  There was a period of months though where it was like OH MY GOODNESS WHAT HAPPENED!!!!  I mean, you work for years, and then he just decides to shove it all together and be a ventriloquist!!  Long road.  

 

Flax oil helps him a lot btw, because of the omega 3.  I just upped the amount.  I was realizing maybe we had dropped it too low.  We started when he was 2, and we were giving him 1 tablespoon a day.  Now he weighs twice as much and we were just giving him the one tablespoon.  I have bumped it up to 1 1/2 (a very generous).  I want to get to 2, sigh, but he hates it.  Anyways, I was just realizing that cluttering is doing better.  Is it the app?  The oil?  Dunno.  But definitely, definitely, definitely get some serious omega 3 into his diet.  It can be fish oil, flax, borage, evening primrose, whatever.  I don't do fish because it makes him fussy.  For us, the flax has been good enough and definitely makes a difference.

 

Honestly, the easiest way to develop language is to sit down and play with him every day.  Get appropriate toys (like go buy them) and sit down and play 20 minutes every day, being very intentional to use lots of language.  Whatever he has, require.  If he can say /a/, then he has to say /a/ every time he wants the next piece.  LOTS of speech woven into the whole session.  At that age puzzles, peg stackers, race cars on a track, finger paints, lacing toys.  MFW has terrific activity cards.  Anything you want.  Most of your developmental goals (colors, sorting, shapes, counting, etc.) will be woven into those.  It's social skills, eye contact, visual processing.  You could even take a swim class together.  Oh, he's too old.  I wouldn't send him alone till he's older.  My ds was 5 1/2 when we started him.  He didn't close his mouth when he jumped in and it was horrible.  After that we had a talk with the lead teacher and we were all much more careful, oy!  So don't let him swim by himself till he has the ability to close his mouth AND handle fear of the water, etc.  It's fine to sign him up, but don't let him be with a ditzy teen.  Needs a mature adult who will watch him and be extra gentle.  My ds now LOVES to swim, but it was hairy for a while there.

 

Well THAT was a rabbit trail!  :)

 

I hope the tape helps.  I don't think it's going to solve all your problems, because I think you have a complex situation.  Therapy for apraxia is HARD WORK!  Our SLP finds kids start bucking it once they get what they want.  Like if what he really wanted was to be able to communicate that he wants things, and he gets that, then maybe, bam, I'm done, no more need on my part to participate, outta here.  And then it's our part to get really firm and say no, this is it, you have been assimmilated, resistance is futile.  And that really is our SLP's approach.  And the end of the day, she's the Borg and that kid is going to be assimillated.  And she told me leave the room, come back in an hour, he'll figure it out.  And she was never mean or anything else, but she didn't ask.  It was just that she had the game, she had what he wanted (and it was high enough value that he indeed would want it) and there was nothing else to do in the space BUT participate or throw a fit.  

 

And I hope what she does gets your ds there, kwim?  I get that you like her approach.  But me, I was paying $110 an hour for therapy and on top of that $60-80 in gas for the long trips.  Now we do double sessions.  I couldn't afford to go and only get part of a session.  He did completely blow a session once.  That was horrible, really horrible.  And there was that tension for a long time.  But she said we've got to do the Borg, leave the room, and we got through it.  And she straps the kids down and puts sensory input under their feet and bums.  There are balance pods you can buy, these disks with nubs.  There are fancier things too like what Abilitations sells.  But I'm just saying there ARE ways to keep it pleasant and get compliance and not waste your session.  And me, I'd be a little upset, because being nice and loving on my kid is NOT going to make up for lack of therapy.  And maybe it works out or maybe that's not your calculation.  

 

I'm saying our SLP was able to get ds to comply before we ever got the additional tools like the tape, the therapeutic listening, neurofeedback, reflex work, etc.  She just has that skill set and enough experience with autism (including lots of level 3) that it was like no big deal.  And I don't think tape alone is going to bridge that gap if the therapist doesn't have that skill set.  Collaborating, asking for help, to me that means they're learning on my kid.  But, you know, let's hope it works out!  You're happy so far with the speech improvements.  I just don't want you to be disappointed if the tape isn't like this wow miracle cure.  It's a piece.  I've seen my ds' scans with and without the tape (when we go in for neurofeedback) and his brain is definitely calmer with the tape on.  Definitely.  But it's not going to fix the ENTIRE DYNAMIC of what is going on in therapy.  It's just going to be a small piece.  

[Crimson Wife]

For some situations, I do not think it makes sense to get into "who is better" when it can turn out that the same things work whether one person or another is doing them.

 

I think it does matter, really, but I don't think we would be doing better for my son to have outside speech instead of outside ABA.

 

I don't think the people doing outside speech instead are doing any worse, either.

 

It can come down to insurance, though.

 

I stopped private speech therapy for a while when my DD got approval for ABA because there are only so many hours and co-pay budget dollars available to devote to therapy, KWIM? We started back up after the discovery of the hearing loss but specifically with a SLP who specializes in auditory-verbal therapy for the deaf & hard-of-hearing. Our ABA team is fantastic but their expertise is autism rather than hearing loss. They don't have the training or experience to tackle the kind of articulation, auditory discrimination, and language tasks specific to dhh kids.

 

I do wonder if the hearing loss might've been caught earlier if we'd continued the private speech therapy. The school SLP was the one person who expressed some concerns over the consonant mixups possibly being hearing-related. But even she didn't make the referral until I was pushing for dyslexia testing at the 2015 annual IEP meeting.

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[Crimson Wife]

Lecka, I have not seen any prerequisite studies or programs offered in ABA training covering speech. So yes, I still firmly believe that for kids on the spectrum with language delays, an SLP should be part of the team.

 

I've looked at the ABA courses that I could take as electives for my 2nd bachelor's, and at least at my university there is one on Verbal Behavior. It's not speech (as in articulation and developmental phonology aka using the correct sounds) but rather language (as in vocabulary, syntax, etc.). Autism causes difficulties with the latter, though kids with ASD may also have speech difficulties as well. My DD had good articulation until her hearing started deteriorating.

 

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[Lecka]

In practice I know who we are working with. In practice, right now we are coordinating with the school SLP and I like her a lot. She sends home new speech articulation targets every week or two. She wrote phonemic awareness goals into his IEP (I didn't know this was possible!). She is good with my son.

 

We are not doing outside speech at this time, though. It doesn't make sense for us.

 

That is true, it is not the same as saying I don't think a SLP is a good person to have on the team, though. I was thinking of it in a different way. Really I do like Ms. J. But as far as am I taking my son to a speech clinic right now, I am not.

 

He has two undergraduates majoring in speech therapy working with him as ABA tutors right now, though. They are great. I am very satisfied with how they work on the artic targets Ms. J sends from school.

 

I have got military insurance and a child in public school who actually qualifies for things, so it is complicated and we do not have time to do everything. Plus the quirks of our insurance do make a difference.

 

I am going to be notified if the speech clinics starts a pragmatics group for my son's age/level, though. They may have one this summer.

Edited February 1, 2016 by Lecka