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#51 Pegs

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Posted 24 October 2017 - 10:52 PM

He likes swings and roundabouts. *shrug*

Also, he was startled by a butterfly (!!!) yesterday, and I could literally see his Moro reflex in action. It was not subtle at all.

#52 OhElizabeth

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Posted 24 October 2017 - 11:31 PM

I haven't tried starfish or any others on him, because I felt it was best to just back WAY off. Now I'm wondering about working on reflexes completely separately from VT. I was really hopeful that she'd be able to take care of all of it, but oh well. Sigh.

 

I've heard of docs who can integrate the two, but just in general, when you're saying what can I find, what can I actually make happen, yes it's going to be way easier to do the reflexes first. 

 

My ds had wicked, wicked behavioral flare-ups when we worked on his reflexes. There's NO WAY he could have tolerated VT on top of that. And maybe your ds won't be that way. I'm just saying look how significant this is. If he's got Moro, he's got more, sorry. It's the first one, and it's like dominoes, a cascade. 

 

His body is just screaming at him, and that level of challenge isn't the specialty of an eye doctor. That's when you go ok, let's get someone who is SIPT trained or someone who's attempting to specialize in this. 

 

I had listed off some other systems for working on reflexes. You can google them plus your location to see if therapists pop up. I know it's hard. It's all word of mouth, seems like. :(



#53 OhElizabeth

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Posted 24 October 2017 - 11:32 PM

Sounds like he's a sensory seeker.



#54 Pegs

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Posted 24 October 2017 - 11:59 PM

We saw an OT once, and she was the person who referred us on to the developmental optometrist. I've emailed her asking for anyone local who might work on reflexes with us before we return to VT.

I also messaged the VT asking pretty much the same thing.

I've found a list of kinesiologists with RR knowledge, so I guess if I don't get a word of mouth recommendation, I'll just start cold-calling.
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#55 OhElizabeth

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Posted 25 October 2017 - 07:36 AM

Yeah, it's a hunt, sigh. SIPT is your sensory integration certification, and the directory for them is online. Obnoxious to find, but online. And sometimes a SIPT person will have taken the time. Sometimes it will be a PT instead of an OT. 

 

This is gonna be most common in the autism community, so looking for OT practices where they specialize in ASD can sometimes find you a lead. 

 

You know, another way would be to look for a person who specializes in EDS or who does the myofascial release, get some therapy just to make him more comfortable, and yourself get the Pyramid of Potential dvd and do the exercises. The dvd I'm guessing is pretty slow and thorough, because her videos on youtube are that way. PoP was the system we did with a PT, and it worked for us. There are various systems, but it worked for us, demonstrably, definitely worked.


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#56 OhElizabeth

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Posted 25 October 2017 - 07:37 AM

What's this list of kinesiologists who work on retained reflexes? Link? I'd like to see that. :)


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#57 Pegs

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Posted 25 October 2017 - 05:32 PM

I found a list by entering my postcode (like a zipcode) here: https://www.retained...k-practitioner/
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#58 Pegs

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Posted 25 October 2017 - 11:29 PM

We saw an OT once, and she was the person who referred us on to the developmental optometrist. I've emailed her asking for anyone local who might work on reflexes with us before we return to VT.

I also messaged the VT asking pretty much the same thing.

I've found a list of kinesiologists with RR knowledge, so I guess if I don't get a word of mouth recommendation, I'll just start cold-calling.


OT wrote back and said to try a kinesiologist.

Onward!
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#59 Pegs

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Posted 25 October 2017 - 11:31 PM

(VT didn't write back at all. Hmmrph.)

#60 Pegs

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Posted 26 October 2017 - 08:16 PM

Okay, so VT forwarded me a message from the optometrist, basically encouraging us to continue with them. Offered to make up the session when he was hiding under chairs and not participating in any therapy.

DS is *very* reluctant, but he has budged a little.

#61 OhElizabeth

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Posted 26 October 2017 - 09:52 PM

Wow.  :svengo:  So was the VT person a tech and the optometrist supervises? And the hiding under chairs was with the tech/therapist and now the doc himself wants to try?

 

You know, some people are just, well they just don't get it. Anybody who gets autism could have seen this coming a mile away. That tells you a TON. 

 

That doc is likely worried about his online reputation and the happy customer gig. You have more important things to worry about, like the integrity of your relationship with your ds and his willingness to collaborate. 

 

If the VT *doc* knew how to do more things, why did he let an unknowledgeable tech proceed with a complex case? That's what I'd want to know. And if the doc doesn't know more, why go back?

 

Seems to me, it could be an option to say hey, gonna do some work with the kinesiologist and let's take a rain check on that appt and come back in a month or two after we've done some work with the kinesiologist. If he respects that, then you're cool. Because I agree, it's not a good way to leave things and you'd like to have a working relationship and someone to come back to! But you can't go back to them if they don't have a LOT more tricks in their hat. And right now, it's really questionable why they even let it turn into that situation in the first place. Someone, or a bunch of someones, dropped the ball.

 

The *safest* route is to go to a specialist for the reflexes and body work, then come back and let the eye doc do what eye docs specialize in (eyes). That would be your absolute safest bet. Anything beyond that, well that's kinda judgment call on your part about what expertise and what other skills you think they're bringing. But if you take him in there and that doc is over-estimating his own skill level and qualification to deal with this, then you've shot it forever with Mr. Absolute, Black & White, Probably Not Gonna Go Back. So if it's a possibility it's gonna go south, might be better to wait and let the eye doc do what he actually specializes in, not is just a novice/apprentice in, and let the kinesiologist do what they specialize in.


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#62 OhElizabeth

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Posted 26 October 2017 - 09:54 PM

Sorry to have so many opinions on you there, btw. I'm just saying it how I see it and how my ds would be.


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#63 Pegs

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Posted 26 October 2017 - 10:11 PM

I'm erring on the side of suspending VT sessions until we find a kinesiologist to integrate reflexes first.

DS doesn't want vision therapy to involve exercising any other body parts, so reflexes stuff integrated into VT just isn't going to work for him.

The glasses have already improved his reading stamina, so at least there's that. He's getting a kindle paperwhite for his birthday next month, so I'll be able to adjust font size and spacing and make reading as comfortable as possible for now.
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#64 Pegs

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Posted 26 October 2017 - 10:24 PM

I think the VT is out of her depth with this kid. When I took him in on Wednesday, he was open to learning new exercises which didn't hurt, but somehow, somewhere, his conversation with the VT went awry, and then: under chairs. Flat out refusal.

So now I'm a bit annoyed that it's been thrown back on me. I got him to the appointment and supported him in communicating his grievances to the VT. And for whatever reason, she wasn't really able to engage him.

And I just want to add - flat out refusal is not normal for DS. He's actually a pretty cooperative kid when he's not stressed. The VT was just TOO MUCH and he is able to communicate this. I'm proud of him for that, yk?

#65 OhElizabeth

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Posted 26 October 2017 - 10:42 PM

Oh sigh. Reality is, we're used to our kids. We do all kinds of little things that compensate for our kids and help their best sides show. So he got into a situation where the person didn't have that autism behavior plan, didn't have that skill set, and she quickly got out of her field and beyond what she could handle. That under the table thing is COMMON. I had a really, really well-respected reading tutor around here say the same thing, that she charges 25% more for the autism kids because they're a pain in the butt, need extra custom everything, and end up under tables. And she's like oh we got an autism certificate so we'll understand them! I'm like, hello, if he's under the table, you still don't understand. ;)

 

You're right to let people stick to their specialties. I'll bet your ds is a different boy in some ways once those reflexes get integrated. His body is probably so 4 alarm fire right now, kwim? So to get that physical calmed down, then maybe he can handle working with someone with less skill. Or maybe you flex it. It would not be out of the question for *you* to go in, them to show *you* what exercises they want him to do and train you, and *you* go back home and work with him. That would be a totally appropriate way to work with a kid with autism. It's great to want him to work with them, but it's ok to adapt too. Or you could do shorter sessions. Or they could work on pairing first, like doing some therapy activities that are very pleasurable and then just bringing in one thing at a time that is more challenging. But all that is after he gets those reflexes integrated.

 

At least you don't have to burn bridges. Hopefully you'll be able to go back and some point and have it fit. We had a VT doc finally tell us with dd to take a month or two, do some OT and come back. That's a pretty normal thing for a VT doc to recommend I think. It's really not so crazy to say at some point VT docs are mainly eyes and that some kids need more body work.

 

It could be this under the table thing would happen in other areas of life too. It might be that as you do the body work you go hmm, maybe we could throw in some mindfulness or Zones of Regulation. Maybe it would be good to have other ways for him to signal he needs a break or how he feels. 

 

My ds has gotten speech therapy since he was newly 2, and he actually has a pretty significant need, even now at 9. The therapy is effective, but he has pretty significant apraxia. It's just his reality. Anyways, we took, I'm not sure how many months off. Maybe it was 6, 9, I forget. We took some months off, and a good chunk of the reason was we really, really needed to get that behavior to where he could be calm, walk in, work with someone, and not be under the tables and coming out jumping on people or refusing to work. Getting the reflexes integrated helped a lot. We also worked on Zones, calming strategies, being able to say when you need a break, etc. Then, when we started back in, we gave him time to pair with the therapist, get used to her, bond. He did have some stress, yes. We just kept working on it, taking it easy, keeping sessions shorter than we would have preferred given the fact that we drive over 2 hours each way, etc. Finally he bonded. Now he just walks in, has appropriate behavior, and is chilled.

 

So working on all this stuff can make it easier for him to go in and work with someone. That's frustrating if you feel like they're attacking you or blaming you for his behavior. The issue is the AUTISM, not you. The challenge is the AUTISM, not you, and the enemy is the AUTISM, not you. Our goal is not to give in but to be increasing skills till he can meet the demands of the situation. He's going to want to be able to work with providers sometimes who aren't as skillful in autism, so it does fall to you, yes, to see what skills were missing and what you can do there. But that's not a whiz bang, fast, instantaneous thing. That's like months, years, developing experiences, building skills. It's a goal, not an easy thing. 

 

You might not have a more knowledgeable VT doc option. It might be you do need to go back to this place. So that's where I think viewing it as skills and what you can do to get his own self-advocacy and self-regulation to where he doesn't have to be under the table with non-autism skilled people is going to be good. It will happen again. But it's not like it's your FAULT. It's just your learning situation like ok, something new to work on. It happens.

 

And yeah, I'm guessing your analysis is really accurate there. He knew it wasn't a good fit (he's bright, his brain figured it out), he couldn't self-advocate to protect himself and solve the problem, so he was stressed. And when a kid with autism is stressed, he's gonna retreat and have behaviors. He was doing the best he could. I wouldn't blame the doctor either. Her skillset is probably just fine for NT kids. 

 

That's really awesome that the glasses are helping! My dd wore reading glasses for several years, even after her VT. Her tone issues are such that even with the VT her eyes just plain fatigue. Thanks to the VT, she understands her body well enough that she can self-advocate and say what is working and what she needs. It lets her collaborate with her eye doc. It would be a really good goal for your ds. It will be nice to get the reflexes integrated and see what can improve, but he actually might need the glasses long-term anyway.



#66 Rosie_0801

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Posted 26 October 2017 - 10:55 PM

So working on all this stuff can make it easier for him to go in and work with someone. That's frustrating if you feel like they're attacking you or blaming you for his behavior. The issue is the AUTISM, not you. The challenge is the AUTISM, not you, and the enemy is the AUTISM, not you. 

 

Autism doesn't have to be viewed as the enemy.

 

Ignorance and inexperience are, but they can both be open to negotiation and peace talks.



#67 OhElizabeth

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Posted 26 October 2017 - 11:04 PM

I knew that line would generate controversy. That's fine. It's an issue people sort through, how they view autism. Some days I can see the neurodiversity camp, and some days I'm channeling the other side and see it there way. Like when I go to heartlessaspergers.com, I really don't see people going oh hug the aspie, neurodiversity is great. 

 

So I'm more saying it as hyperbole, to generate thinking. At some point what is the problem and what isn't the problem. It's not a problem for a perfectly fine, VT doc, who is fine with NT kids to happen to be NT. It's not their fault they're NT and it's not their fault they don't have the skill set for working with autism. There are lots and lots of people who can't work well with my ds. They just can't. And I'm over pretending about that or getting worried about that, and I'm certainly not going to fault NT for being NT, even though sometimes I really do think the NT thing is a social construct and defined merely by majority, not by superiority. I really can be in the neurodiversity is good thing on a good day (removing my even more controversial opinions here)... 

 

So yeah, more just meaning it as a suggestion to think. I think it's complex. 


Edited by OhElizabeth, 26 October 2017 - 11:07 PM.


#68 Pegs

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Posted 26 October 2017 - 11:32 PM

It's the autism and the anxiety and the retained reflexes. That whole mix with a professional who's not seen all that in one kid - that was just too much.

I told VT that OT had recommended kinesiology, and that we'll address reflexes first then get back to her.
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#69 MistyMountain

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Posted 27 October 2017 - 08:38 PM

My ds hid under chairs before his VT sessions started and it was hard to get him in the room where they do VT. He never did that anywhere else before. He did manage to get in for his appoinments though. His VT is good about stopping what they are doing when he gets upset and convincing him to sit where he is suppose when he is being obstinate about that. He used to be uncooperative at the beggining of a session but once he got started he would do better. She is careful about talking to him but he still will say things like she does not know what she is doing or she is not nice at home and that just comes from him not liking VT. The only time he has been uncooperative for teachers or instructors has been VT. He was always good for teachers when he went to school and is for extra curricular activities. In retrospect maybe we should have done the reflex stuff first then gone back to VT. I have no coverage for any of this though so getting extra evaluations and paying another provider in the mean time was not something easy to do. It seems it is going a little beter now that the reflexes are integrated.

Edited by MistyMountain, 28 October 2017 - 01:03 AM.

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#70 Pegs

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Posted 27 October 2017 - 10:31 PM

Same here, MistyMountain. We don't have refusal to participate or hiding under chairs in any other setting.

I'm glad to hear that things are improving for your kid now that reflexes are integrated. I'm really hopeful that this will be the case for my DS too.

#71 drjuliadc

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Posted 04 November 2017 - 12:37 PM

This might not be helpful for the op but one way to remediate retained reflexes is to repeatedly elicit the reflex. So for a Moro, just repeatedly do trust falls, for example.

In our area, Virginia Beach, there is seminar for parents called Connections where they teach the parents how to remediate primitive reflexes themselves. The instructor travels too. I'll try to find a link.

She had several different ways to remediate each reflex. I highly recommend her 2 day seminar.
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#72 drjuliadc

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Posted 04 November 2017 - 12:40 PM

Here is the link to the Connections seminars. Seems they are only one day now.

http://www.wellconnectedbrain.com
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#73 Pegs

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Posted 04 November 2017 - 07:20 PM

It's a shame I'm so far away down here in Australia, but thanks for sharing the link. Others may find it helpful. :)

I've found a chiropractor with knowledge of retained reflexes and a special interest in paediatric neurology and learning difficulties. I'm hopeful. We'll see what comes of it.
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#74 OhElizabeth

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Posted 04 November 2017 - 11:37 PM

Ooo, that sounds really promising! I've seen online about some chiros specializing in neurology in the US too. Well keep us posted! My ds and dd both made significant gains by working on reflexes. 


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#75 Pegs

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Posted 05 November 2017 - 03:44 AM

Ooo, that sounds really promising!


I'm glad you think so too. I'm really just feeling around in the dark, here!