Vision therapy

[Pegs]

DS has just been assessed by a developmental optometrist who identified poor tracking, convergence, focus.

 

We're picking up DS' new glasses and starting VT next week. Apparently he's likely to need eight sessions, rather than four.

 

What to expect? Anecdotes, stories, experiences are all welcome.

[OneStepAtATime]

1.  Expect fatigue.

2.  Expect to need to reduce academics significantly.

3.  Read to him instead of expecting him to be able to read on his own a lot.

4.  He may get headaches.

5.  He may need naps.

6.  He may need extra hugs and possibly some sort of something to look forward to after each session to get him through those sessions.

 

And with only 8 sessions, how often are those occurring?  Monthly?  Weekly?  Are they giving you any exercises to work on at home?

 

He is having to unwrite and rewrite how his brain and eyes work as a team.  That is a hard thing to do.  It can take a lot of work.  If they can give you some things to work on at home that can help but he may be very resistant.

 

[Pegs]

Thanks, OneStep.

 

The eight sessions are two lots of 45min/week for four consecutive weeks.

 

We'll be given software to do daily homework on the PC, and possibly other exercises.

 

I've already taken all reading and writing out of our homeschool. I'm a little worried about DS losing hard-earned handwriting stamina,so I guess I'll introduce a whole lot of playdough/putty/clay activities, to at least keep up his tone. He has very hypermobile fingers, so writing has been a lot of work. I'm amazed he's done so well with such significant vision problems, actually. I might ask our OT for ideas as well.

[Pegs]

DS doesn't mind getting glasses, but he's not keen on the VT at all. Any tips for getting buy-in? Or at least tolerance?

 

I've told him that the first appointment is just to help us both learn more about it.

[Julie of KY]

Agree with One Step that it takes a lot of energy to do VT well. 

We did it weekly for 30 weeks. 

[PeterPan]

That's a lotta VT they're doing. Places vary as far as how they approach it. It's really naive to think THERAPY is going to be fun, easy, preferred, etc. Go in with the mindset that it's going to be WORK, that they'll make it as fun as they CAN, but that it may very well be fatiguing. 

 

Also, given the amount of physical issues he has (writing, etc.) and given how absolutely slipshod, crummy, variable, etc. OTs are (I'm in a foul mood apparently), have you checked for yourself to make sure he has all his retained reflexes integrated? Because bank on it, if those aren't integrated this is gonna be WAY LESS FUN than it could be. Like it could be really, really unpleasant. And you can go through 4 or 5 OTs before you find one who is worth half a grain of salt on them. So it's really worth checking for yourself.

 

It sounds like he also might have some anxiety. I would use all your anxiety techniques. Pair the appointments with something highly highly preferred or motivating. Like we would take field trips afterward and go to caverns, go to a history site, etc. Or if he likes hunting, go to Cabela's. Like really do some over the top things that *pair* the unpleasantness with something good. My dd was really tired afterward, so she would nap on the way to wherever. 

 

Motivators like lego sets, rewards, well I tried, but they weren't much help. I would just pair it with preferred activities. 

 

The advantage of your place doing so much therapy in-office, even though it's expensive, is that they're taking the brunt rather than you. That can be really good. It can also be stressful, because it's someone for him to get to know and be used to. Will the therapist be consistent? If you insist on a consistent therapist, consistent time, that can help. Anything where you're reducing anxiety, helping it be more predictable can help.

 

I use Calm Child with my ds. It has a touch of chamomile, etc. I'm finding that it helps take that edge of anxiety off so he can go into the thing and be chilled. The anxiety starts the day or night before, so he'd spend the day leading up all stressed, not sleep well, and then not be his best. So for us, what is working well with appts and things he's stressed about is to use those stress/anxiety techniques the day before. That way he sleeps better. I'm saying if you can't make it better, which you can't always, then use your tools to at least reduce the stress and anxiety about it. 

 

Definitely don't pay ahead. Like no more than one month. Some places try to lock people in by having them pay many sessions ahead (months) and you don't want to do that. It doesn't give you any flex if the therapist is a terrible fit or you need a different pace or something. It could happen. Hopefully your sessions will work out and he'll do great! But if you need to flex, it's ok. There's a lot of room in there, with that pretty aggressive plan, to find a pacing and therapist that clicks for him. I'd definitely watch it and get his feedback. I was uber picky with dd about which therapist she worked with. I knew there were some who just would not click with her. 

 

Well keep us posted on how it goes. Some kids are really crunchy with it and some do great. Hopefully he'll do great! Feed him. Food solves a lot. :)

[Pegs]

Bad news first: yes to retained reflexes.  :closedeyes: 

 

Good news: the VT will work on these along with visual-motor systems!  :hurray:  I'm so relieved, because I thought it was going to be a whole 'nother rabbit hole to fall down. And I'm already kinda overwrought from solo parenting, and study, and just life in general with an intense child.

 

I still haven't quite figured out how to get him on board, but he knows that we're meeting the VT tomorrow to "learn more about it." I'm hoping she gets some good rapport happening pretty quickly, or this is going to be quite the battle. We'll go out for sushi afterwards. He really likes sushi.

 

And I think that the anxiety will ease off a whole lot once we actually know what it's all about. DS finds anticipation and unknowns really stressful.

[PeterPan]

Well that's good she has a plan for the reflexes! This could be a huge time of growth for your ds. My ds RADICALLY CHANGED as we got his reflexes integrated. Seriously. Like huge, radical, astonishing changes.

 

The vision problems are treatable and you'll be able to do something about the reflexes. That anxiety is gonna be lifelong. I would go ahead and look for some counseling to do CBT with him and get him some strategies going. I'm not saying you're wrong that it won't die down. I'm just saying it's gonna be there, every new situation, every time, and maybe this is an opportunity to make that step and bring in some support on that. If he had a counselor he felt comfortable with, he could start learning tools. That whole gig of getting comfortable using help, using your tools, understanding what's going on, self-advocating, it's all really important. It's part of the process.

 

At the very least, you could begin some daily mindfulness, if you don't already do that, or consider Mighteor software or both. I'm not saying the Mighteor helps with anxiety, because I don't have data for that. What it definitely does is help you connect to how you're feeling, which lets you then realize you need to use your strategies. So it would go well with other things you're doing, and it's fun, games, reinforcing.

 

Well I'm happy for you that you have a VT doc who is nailing it on reflexes. That must be a huge relief!!  :thumbup1:

[PeterPan]

Love the sushi plan! :D

[Pegs]

Psychological support was one of the two recommendations on his autism report (the other was OT). It's definitely the next thing on the list.

 

We have our first VT appt in a few hours. I'll be back later today with an update. :)

[Pegs]

This morning's session went well. DS was cheerful and cooperative, but was exhausted by the end of it. We finished at 11.30am, but the poor kid looked like he was well overdue for bedtime.

 

He got very shouty for a little while when we got home, but I managed to deescalate him and we had some snuggles while I pretended to be interested in his favourite game and let him monologue at me. We also went out for sushi once he was a bit more settled.

 

The homework looks pretty full on. We are starting with exercises to integrate DS' retained Moro reflex, plus some other physical tasks, and a couple of computer based activities. We have a total of six activities daily for homework.

 

Homeschool is slow going this afternoon. I think he's a bit fatigued, but doesn't really recognise the feeling, so he's uncomfortable and figures it must be my fault (!!!). I'm encouraging breaks and quiet time, but trying not to get thrown completely off schedule, because we find the days run smoother with some structure. It's a tricky balance.

[PeterPan]

You might want to drop your school work entirely for now and just do the VT. It sounds like it's going to be pretty trying for him, especially till he gets a breakthrough with those reflexes. If you want to make it more comfortable, stop the VT, only do the exercises for the reflexes, work on the reflexes until they're all integrated, THEN go back and do the VT. I know the optometrist will say you can do both. I'm just saying it would be a way to cut down on the torture. The order is retained primitive reflexes, the visual and vestibular. So everything they're trying to get him to do with his vision is harder because the reflexes are a mess. How many were issues? How many did they test? If moro is not integrated, probably others are not. 

 

If you work on the retained reflexes daily, consistently, 30-45 days can be lightning bolt, radical changes.

 

It's more important that he stay calm than it is to get school work done. Your worst case scenario is he gets so frustrated he refuses therapy entirely. 

 

Do you work with a behaviorist? It sounds like you need one. I would use your calming strategies and take them for in the car on the way home. Does he have a preferred stim or something he does when he needs to chill? I would do that. You are correct that he's not telling you if he has headaches. My dd had the language (ADHD, no ASD), and she took ibuprofen before every session. You could assume he's having headaches and give him ibuprofen before the session starts.

 

Yeah, I hear you on structure, sigh. What if you do something really alternative afterward? He's going to be this wicked tired after the homework too, odds are. See, but it's very possible. There are other things you could work on, like life skills. Or do your school work or routine plan first, only for a shorter period of time, then do your VT homework.

 

I would consider disconnecting the VT and the reflex work and doing the reflex work first. Maybe it will go great. I just, I don't know. I just have a really bad attitude these days about experts. They say anything and take no accountability for the consequences. If your kid is destabilized or so frustrated he won't go back, it won't matter how theoretically right the eye doc was. My dd is very sensitive, and she gets so tired of practitioners who just ram in with tons of stuff and overwhelm her...

[Pegs]

She did say to prioritise the reflex work, and to do it daily. I'm pretty sure we'll be addressing others, but we're starting with Moro.

 

I'm checking in with him about headaches. He's pretty good at letting me know about them.

 

I put him in charge of car music on the way to VT this morning, and he listened to an audiobook on the way home. He finds both of these things soothing, so I guess that's our anxiety strategy in action right there. I'm happy to make a habit of post-VT sushi, too. It's one of his favourite foods, and he can be hard to feed when he's anxious, so I like knowing that lunch will be a done deal, iykwim?

[Pegs]

As far as a schedule goes, I'm thinking...

 

* Morning time

 

Break

 

* VT physical tasks

* VT on the PC

 

(Very long!) Break

 

* Maths

* Spelling

 

He's used to doing morning time plus four subjects a day, so I think he'll get on board with this plan.

 

Also, we can always drop maths and spelling if he's too tired when we get to them.

Edited October 18, 2017 by Pegs

[PeterPan]

Anything you can do that is distance focusing instead of near focusing will feel better and will let his eyes relax. So like on the spelling, if you have your choice of doing it written/visually vs. maybe orally or with a game, do something that uses less near focusing for right now. That's just if he's feeling the strain and fatigue. 

 

Sounds like you're working it out! It will feel good when you get to the other side. :)

[Pegs]

Thanks for the tip. Nature walks, here we come!

 

Spelling is AAS, and he does all the dictation on a little whiteboard, so it's close, but not super focussed.

 

Math we can do entirely orally.

[Pegs]

Sounds like you're working it out! It will feel good when you get to the other side. :)

Thanks for the encouragement! :)

[Pegs]

Wow. This kid is really putting up a LOT of resistance. We got through two activities for homework today, and quickly took off for an impromptu snack run. He picked out some treats for our movie night tonight.

 

I'm having a lot of trouble filling the stimulation gap seeing as how we've backed right off from academics. This is a child who literally cries with boredom when he's understimulated. So here I am, bumbling on through. Audiobooks are our friends.

[PeterPan]

I would use your own judgment and set him up for success. I personally would not do VT on him until the reflexes are integrated. Doing the reflex integration alone was VERY ruffling to my ds. Like any behavior he had had in the past that was connected to those retained reflexes got WORSE, way worse.

 

Your ds is way more complex than the average client walking into that VT doc's office. It's why I keep posting in this thread, because I think you need to know that. He's more complex and he needs much more careful handling. He needs to be set up for success and the amount of struggle needs to be kept reasonable. The whiz bang approach really might overwhelm him. Then you'll be no where, with total shut down. 

 

You want to keep the frustration with each change to a minimum. If you did JUST the reflex work right now, you might be able to keep going with some academics. In 30-45 days, you'd have the reflexes integrated enough that those symptoms would have settled down. THEN you could start the vision work at half pace and be able to keep that half pace of academics.

[PeterPan]

But if you've got another mix that you think will work, do it! I'm just saying don't expect that VT doc to be right just because she's $$$ and got Dr. in front of her name. A dc with ASD plus plus plus is going to be WAY more complex than the average bear. The reactions will be more intense and the ramifications more complex. His ability to self-advocate and say how he feels might be less. He may be feeling some really intense things and not able to put words to it. 

 

So I would go with your gut and modify the plan from the doctor to a level you think will keep your ds stable. Sure talk with her, but you really may have to go with your gut here.

[Pegs]

I like the way you put that - "ASD plus plus plus". He really is a complex little thing. Thanks for the reminder.

 

We're doing duck walks and pigeon walks to integrate Moro. These need to happen daily. Yesterday I stumbled upon some inspiration and put The Duck Song on for him. I think I'll have compliance/cooperation from here, because he LOVES it when I pair tasks with music. Winner. Much relief. We'll do duck walks to Duck Song 1, and pigeon walks to Duck Song 2.

[Pegs]

He may be feeling some really intense things and not able to put words to it.

 

 

There's definitely a bit of this going on. I was speaking to another WTMer on the phone last night, and we pretty much concluded the same thing. DS tends to interpret feelings of discomfort as either physical pain, or boredom. He can be surrounded by cool stuff to do, and still complain of boredom. He can get a bit shouty: "Do something about my boredom!" Which really means, "I'm uncomfortable! You're my mum! So fix it!"

 

I'm trying to fill out our days with things he enjoys. Lots of quiet snuggly time. Many treats. Favourite foods. Etc., etc..

[PeterPan]

Have you thought about getting a behaviorist? My behaviorist does a lot of things for me, little stuff. It's not only to bring in workers and do ABA. Like for me, she sees these patterns and helps me piece together stuff like when he hurts, this is what happens, or this is what happened last time. She works on things like words for emotions. There are games from Social Thinking, where they can work on expanding his ability to express more nuance. You might find, or at least I find with ds, that lots of things are sort of b&w, all or nothing, all the way good or all the way bad. So like you're saying, when he puts words on what he's feeling, he doesn't perceive it well and isn't able to communicate nuance.

 

Yes, that boredom stuff is serious. It's waiting, it's initiation, it's executive function. You could make some visual schedules or choice boards so he realizes his choices and would be more empowered. Then you could use choice boards with a prompt and fade the prompt. You definitely don't want it to always be that you're helping him realize those choices. If he has the cognitive ability to become more independent in that and have faded supports, that would be good.

 

LOVE your creativity with handling the reflexes!!! Moro is pretty foundational. 

[Pegs]

I looked into how I might find a behaviourist very early on (well, post diagnosis, so not that long ago), and honestly, I think that maybe they're just not a Thing here.

 

CBT/psychology is where we're headed next.

 

VT homework resistance is abating. I really won him over with that duck song, and he now doesn't hate the star chart with a burning passion. Phewwwww!

[MistyMountain]

My ds has been extremely resistant to vison therapy too and his behavior got much worse especially right after starting. We got the reflex work out of the way finally but it has not been all sunshine and rainbows since then. He is less resistant now but he still says he hates it. I notice that he seems to call more things boring that he used to enjoy after starting.

Edited October 22, 2017 by MistyMountain

[Pegs]

Thanks for sharing, MistyMountain.

 

Sounds like we're in for quite a slog.

 

Siiiigh.

[Pegs]

I got in touch with the VT by SMS today, because the Moro walks are really difficult for DS and he complained of back pain afterwards. She said to discontinue anything which is making him uncomfortable (um, that would be all of it!), so at least I know that she is being careful not to overwhelm him. I'm glad to find that we're on the same page with that.

 

It's hard to know how hard I should expect/require him to persevere, as he is so very uncomfortable.

[Rosie_0801]

It's amazing he's doing as well as he is with a retained Moro.

 

So :hurray: to you. 

[Pegs]

Thank you so much, Rosie.

[PeterPan]

Can you get a PT/OT who has training in retained reflexes to do the work with him, THEN go back to your very nice VT? His needs may be beyond the scope of her practice. There *are* some rare, occasional VT docs who've learned a lot about reflexes, but if you've got a kid who maybe has other physical issues (low muscle tone, dyspraxia, whatever) and is having trouble, he may need more whole body answers. There are various systems to work on retained reflexes, so she may be trained in one and maybe he would benefit from a different one. 

 

All that matters is that the reflexes get integrated and you eventually get to work on the vision problems. It doesn't matter who does them. Did she give you replacement exercises for the Moro? I know that duck walk is real standard stuff. You can look on youtube for alternatives. You could do that today and maybe also google for tests and test for the rest of them (ATNR, STNR, Spinal Galant, etc. etc.) while you're at it. Pyramid of Potential (site, not youtube), has a list of the most common reflexes to look at. You could use that list and find the tests for each on youtube. Then you'd know how much you're dealing with.

 

Did your OT say he has low muscle tone or dyspraxia or both? There's a strong connection between retained reflexes and the low muscle tone. I was told until you get those reflexes to integrate the low tone issues don't resolve. So it's not an accident that he's having pain or trouble, kwim? That's why I was saying this may be a stage he needs to stay at a while or where he needs more help. But you could sort that out with youtube maybe today, see how many reflexes you're dealing with.

 

I'm not saying it's better, but RMT (rhythmic movement therapy) is another system for working on the reflexes. I'm really, really not saying it's better, just that it's another. You could them google search that and see what RMT recommends for Moro. And you could see if Pyramid of Potential shows anything for Moro. 

 

Sorry he's having pain and a hard time. Definitely work with honesty together. It doesn't matter who's right, only that it gets right in the end. So when he has pain, you go wow let me find out if that's normal, let me see if we have options, let me see if this is a tough it out or a tweak or back up here kinda thing. We've had SO MANY practitioners be wrong, especially with my uber-sensitive one (dd). They'd make it sound like just push through or they didn't really know enough about their field to know other ways to get there or what step they had skipped or why she was having that problem. So it's why I don't trust people anymore, not ANY of 'em.

[PeterPan]

https://www.google.com/search?client=safari&rls=en&q=retained+moro+reflex+rmt&ie=UTF-8&oe=UTF-8  That turns up a bunch of hits.

 

The best Moro reflex integration exercise - YouTube  PoP shares their moro exercise instructions on youtube.

 

Pyramid Of Potential - The Solution For Learning Challenges - Primitive Reflexes  DVDs (cost money, sorry) on testing for retained reflexes. This is the lady our successful at it PT liked, and the tests are pretty thorough. Or take her list and go through youtube. 

[PeterPan]

Retained Moro Reflex or Startle Reflex - Solve Learning Disabilities  Starfish--I think this is what PoP does and what the PT had dd do.

 

Primitive Reflex Exercises - Carthage Central School District  Totally different recommended exercise, a very slow bridge. I just thought it was interesting that a school district was putting it out and training their people in it.

 

The Moro Reflex: "Bridges" - YouTube

 

If he feels agitated, stressed, or otherwise out of sorts after doing the exercises, there are things a PT/OT who specializes in this might have him do. Basically you're setting off that startle reflex and making his sensory system go crazy, so he might need distractors to tolerate input during it or he might need to decrease the number/amount at first to a tolerable level (3 instead of 10). The PT would have dd wear tight clothing and lay heavy blankets on top of herself, so it was like calming input while also getting the agitating input. And of course anything they use for calming the sensory system afterward can be good. I think my dd played a certain type of quiet music that calmed her, while she did the exercises, while in tight clothing, while having the heavy blankets on top. 

 

Some kids are more complex like that. Some kids just go to the VT doc and get told to duck walk and duck walk. Then there are the other kids. :D

 

The plus side of having a really honest relationship like that, where you're problem solving and working through it together, is that he starts to understand and own his body and self-advocate. He learns how to push back and say that doesn't make me feel good and how to problem solve with a practitioner. It's something even adults don't always do well! But it's important for our kids, because it empowers them. It lets them know it's ok if it's not comfortable and how to sort through that. Because, in reality, even if you get the reflexes integrated, if he gets stressed, he may find they undo and he has to go back and do the integration exercises again. He's gonna have to own his body over time and understand how he feels and self-advocate. Then he'll be able to say ok, my symptoms caused by retained moro or whatever are returning and I'm going to choose to do the exercises to help that but I know I have to use these strategies to make it comfortable. 

 

That might really be his long-term outcome. It has been for dd. So, as much as I'd like to say you get them integrated and it's like a healed broken leg that it just poofs, I'm not sure that's the case. 

SaveSave

Edited October 22, 2017 by OhElizabeth

[PeterPan]

Obviously don't tell him that this could be an on and off problem. But I'm just saying it's a good reason to build that communication, because you don't know how his reality will pan out. Being self-aware and able to self-advocate and to know how to work through that will be to his advantage. It's a skill to be able to tell yourself to do something you don't want to do too, that's for sure. It's a hard balance. 

 

That's really good that the doc is talking with you. You'll get it sorted out!  :thumbup: 

[Pegs]

There's been no mention of dyspraxia, but the optometrist did say that the hypotonicity we're seeing in his hands, for example, is also a problem for the muscles around his eyes. He does have pretty low tone all over. I have Ehlers Danlos, so his low tone and hypermobility might be coming from that.

 

VT said she will give us new exercises for Moro when we see her next, which is in a couple of days. I think I'll ask her to check all the reflexes at the next appointment (I'm not confident doing it myself). Then I'll ask if she can either address all of them, or refer us on to someone who can. I'm getting the feeling that this is not going to be the neat little 2 x 4 weeks experience I was expecting. We're dealing with more long haul stuff.

[Pegs]

Thanks for all the links, by the way. I'll have a proper browse through all the information you've provided once I get to the PC. It's a bit too fiddly on my phone.

[Pegs]

I forgot to say that until we see the VT again for new exercises, we're going to do seated duck walks. Just thought I'd mention it in case anyone with similar struggles ever finds this thread useful/validating/informative.

 

ETA: Nope. He hates all of it, won't try a seated duck walk, has regressed to hiding under things and signing instead of speaking, except when he needs to share that he's "bored".

 

ETA2: I managed to gently cajole him into Morning Time, and he seemed to relax into his routine pretty happily. I am very relieved.

Edited October 23, 2017 by Pegs

[PeterPan]

You have ED? Has he been checked? Some others on the boards here have dealt with ED or suspected ED. I don't know much about it, but it seems like if you got a PT who was knowledgeable in reflexes, that would be the best of both worlds. This could quickly get beyond your VT doc. Just be really cautious. I'm sorry he's shutting down and getting overwhelmed. Definitely back off. 

 

I'm like you, not really comfortable doing the tests. The people who are good at them make it look so easy, lol. 

 

Kid gloves. Make people handle your kid with kid gloves. No whiz bang, 14 things at once. If he has ED, he's got significant stuff going on. Nothing in his body is going to react the way they think. 

 

Well keep us posted on how it goes with the changes at the appt. 

[PeterPan]

Did you try the other moro exercises on those videos I linked? That starfish one is a pretty normal one to do. 

[Pegs]

Yes to both backing off and kid gloves.

 

I tried a modified lying down duck walk where he lay on his back and held the pole (lightsabre), and I manually turned his feet out and walked them up and down for him. Even this was extremely uncomfortable for him, because his shoulders so very badly wanted to turn out!

 

I guess next VT visit I'll have to ask that we either very very gently integrate reflexes with the VT, or be referred on to someone with more expertise.

 

He hasn't been evaluated for EDS, but he probably has it. All his practitioners know that I have it, and that he is hypermobile. So we're all working under the assumption that he has it also.

[PeterPan]

You could, just for your trivia, try the other exercise options on the videos I linked and see if they're comfortable. Then you'd at least know whether ANY of the common exercises for integrating Moro work for him. 

 

Sorry it's hard. You might try finding the PT or whomever you'd use. Might take a while. Might need a tag team approach. I have no clue. And maybe your VT doc this week will have more options. That would be really helpful! I agree, doesn't make sense to do things that hurt. Should be able to do a different exercise or back up and figure out why and get some help. He's clearly extra special. :)

[Pegs]

I'll try starfish at home tonight, depending on how resistant he is. I'm erring on the side of backing right off for the next couple of days, and starting over with the VT on Wednesday.

[PeterPan]

If you do them, maybe just try them saying Hey, I wanted to know does *this* hurt as well... Like it might be uncomfortable in a totally different way, or it might be that positionally it's not hurting at all. You could throw out a couple of them that way, just asking him to try them once to see if they hurt. Then you'd have that data.

 

But yeah, makes sense that now that he is getting frustrated you'll have to back off. 

[Pegs]

We're taking today off homework and seeing the VT again tomorrow.

 

I've told DS that VT didn't know the exercises would hurt him, and that neither of us want him to be in pain or uncomfortable. He understands, and is open to going back and trying different exercises.

 

Backing off was definitely a way forward, in this case.

 

Thanks OhE for your support in backing right off and pulling the kid gloves on. I don't think I've ever really identified as a special needs parent, but it's becoming clearer to me that I have a pretty special kid.

Edited October 24, 2017 by Pegs

[PeterPan]

Keep us posted on how it goes! You are SO right to do it this way, love how you're explaining it to him.

 

That's how people get hurt, when practitioners don't have enough experience to realize extra complex cases when they see them. They're used to the 95% of kids who come through where their formulas just work. So when you've got that narrower percentage kid, you've got to be extra careful and pull the SN card.

 

When ds started swim lessons, I thought oh they're the experts, they'll know, blah blah. He went under the water, had a horrible reaction, and had terrible anxiety about it for months after that. They're only experts to the extent they've had experience with *our* situations. Once you say spectrum plus this plus that plus another thing plus another, that's a pretty special kid. Trust but verify. Or just plain don't trust. 

 

Definitely your approach of collaboration and honesty and communication is the way to go. It will allow him to see that practitioners mess up, that it doesn't mean they CAN'T help us but that sometimes we have to collaborate and work together even more. It will be really good for him in the long run, because this could happen in other areas too. It's a good life lesson. 

[kbutton]

I have a kiddo with a connective tissue disorder who has some retained reflexes and has done VT...my other kiddo has autism and has done VT (reflex issues might be there, but if so, less of a problem). Anyway, has he ever had myofascial release? My son with connective tissue problems sees an OT who works on reflexes and does a lot of release techniques on him. He is a mix of hypermobile and hyper tight. It's like one set of muscles is stuck to compensate for the mobile ones, and the reflexes are just making it worse. Anyway, that might be why your son is experiencing pain with the Moro work. My son's tight/lose pairings are in the shoulders, ribs, and hips. 

 

The OT has been doing the release work for just a few sessions, one per week. In just a month's time, our chiropractor could both see and feel a difference in my son--he was very vocal about it, and our chiro is not usually that vocal.

[Pegs]

Today's session was an epic fail. DS was teary as he described to the VT how difficult the exercises were for him, and then went and hid under some chairs in the waiting room.

 

I actually don't know whether I'll be able to get him back there.

 

Starting to look into other ways to address his reflexes (myofascial release is now on the list of possibilities - thanks kbutton), and maybe we can try VT again later with fewer physiological barriers in the way.

 

I just don't know.

[Rosie_0801]

OhE, do you know much about how the reflexes work together? I know you can't get integrate the plantar entirely without getting the palmar completely integrated first. Are there any  prerequisites for the Moro? I'm pretty sure that one stands alone, but you know more about it than I do.

 

 

Pegs, how does Boyo do with swings and roundabouts? I believe they help with the Moro too.

[PeterPan]

Oh Pegs, I'm sorry it was such a fail. Sigh. But now you know. It happens, and it happens to everybody. That doc could be totally fine for lots of people, but she was outta her league. She just was. He's way more complex.

 

So yes, get him calmed down, put words to his frustration, say that you're going to look for other ways to help his body feel better, and move on. No, I wouldn't go back to that lady. Maybe a long time from now, when other stuff is better.

 

Kbutton's point on the myofacial release is really interesting. It seems reasonable that it could be an explanation for his pain. I don't know, just saying it's reasonable. Did you ever try the other exercises to see if he could do any of the others commonly used for Moro without pain? 

 

Kbutton's person is an OT. I had only heard of massage therapists doing myofascial release, so that's interesting that an OT is doing it. It's funny how you search through people and then bam someone comes along who's actually really helpful. 

 

It's hard when they're under tables and it's very stressful for *you*. :(

 

The thing you have going for you, the biggest thing, is the honesty of your communication. Right now your ds is putting things into words (huge) and willing to work with you at least (huge). So you've got something to work with. You just didn't know how far from typical he was going to be. You're looking for someone unusual at this point, not therapies and approaches that work for the 95%. Take some time, keep looking. Think about what is most important, what is most FOUNDATIONAL. Like what is his worst problem, that if you could make headway on it would change his life? And what is the most foundational step toward making that change happen? 

 

Retained reflexes were huge here, way huge. They effect language, behavior, vision, muscle tone, EVERYTHING. I think it's reasonable to want to find a way to make bodywork happen so he can tolerate some system of reflex work. There are various systems and they all work, so all that matters is you're able to get his body to where he can tolerate SOMETHING.

[PeterPan]

OhE, do you know much about how the reflexes work together? I know you can't get integrate the plantar entirely without getting the palmar completely integrated first. Are there any  prerequisites for the Moro? I'm pretty sure that one stands alone, but you know more about it than I do.

 

 

Pegs, how does Boyo do with swings and roundabouts? I believe they help with the Moro too.

 

I'm sorry, I'm *not* up on it enough. Yes the Moro is generally considered the earliest. There's one earlier, but it's actually used for birthing, iirc and just very uncommon to be discussing. (fear paralysis reflex)

 

My suspicion is that Kbutton is correct, that something about his probable EDS is making things uncomfortable. He's had so many other body symptoms, it's a reasonable assumption. In general, Moro is pretty straightforward to integrate. You just lie on your back, do the starfish gig, boom. That's why I keep asking if she tried any of the OTHER ways to work on it, because the duck thing was dead in the water. (sorry, haha)

[Pegs]

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.

Edited October 25, 2017 by Pegs