Handwriting 8 yr - refusal/visual spatial/working memory

[Sarah00]

I need ideas for handwriting for my 8 year old son. He never cared about drawing or writing at all until he was 5 and it's still pretty minimal. His 4 year old brothers drawings are more elaborate than his. 

I started Logic of English Foundations cursive handwriting around age 4.5 but he just couldn't make sense of all the loops and swirls and we moved onto manuscript using TPT handwriting heroes. Similar concept as HWT. 

From there we went back and did sandpaper letters and then did OT Size Solutions which helped some. He was also still switching his hand at age 6. The OT said he was right handed and he was dominant in his right hand at the time but often wrote left handed. He's demand avoidant and when I told him he was right handed he switched to fully writing with his left. He's 8 now and still 100% writes with his left but uses his right for lots of other tasks. 

He also had IQ evaluated and was borderline low in visual spatial and working memory which I'm sure affects handwriting. 

He refuses to write certain letters left handed and really struggles even when he wants to write. When he doesn't want to write, it's a miracle if I can get him to write a single word, much less a sentence. Usually it is outright refusal. If he's writing on his own time, he has more stamina but gets upset about how poorly his letters look. And he refuses to write quite a few letters in lower case. 

Right now I am having him do writing assignments on the computer which he doesn't mind at all and it takes so much less time. But as such, he's not getting much handwriting practice. 

He does like fun/games so I'm looking for advice on games or ways I can get him writing more but also practicing correct formation without pulling teeth.

I'm also wondering, at what point do you just give up and let them use a computer full time?

 

 

[Rosie_0801]

It sounds like he needs crossing the midline work, and possibly has a retained palm reflex.

My daughter couldn't learn to write until I began teaching her joined letter pairs. I don't know why.

[kbutton]

Besides the retained reflex possibility, I suggest a developmental vision exam. It looks at more than just acuity. Covd.org is where you find a developmental optometrist. These kinds of vision issues can easily fly under the radar—kids know only what they see; they don’t know what is not normal because it’s normal for them.

Mixed hand dominance seems to go with convergence issues. Both my son before vision therapy and another relative with convergence issues are right-hand dominant but do some tasks better left-handed to compensate for the convergence (no longer a factor for my son now that his is fixed).

Convergence issues caused lower than expected visual spatial scores on my son’s IQ test. After fixing the convergence issues, his entire non-verbal score increased dramatically (multiple standard deviations).

A good vision therapist will do bodywork (midline and often specific reflex work), and the sessions will be tailored to your child. It can make the OT work more effective in the long run.

[PeterPan]

Are you still getting OT? If you're not, you need it. If you are, you need a new OT. Yes probably retained reflexes and those glitch the visual development. Do a LOT MORE OT and then hit the dev. optom. and see if you still need vision work.

My ds did the mixed dominance thing a lot time and he's diagnosed with ASD support level 2. He would assemble lego kits in mirror image because of the whole brain issue, so we did them a lot more to just keep work, working on it. And he got a LOT of OT. BalavisX is particularly good for this, and we got an OT who was the bomb at it. You can get the video and book and try to do it yourself. I'm just not that coordinated and probably never will be, lol. This OT could do all the stages, the most difficult stuff, and carry on a conversation and smile at the same time. 😂 

Yes, use tech. You're probably going to do psych evals and some point and they're probably going to diagnose some SLDs and more going on. You're right on track to do what works. If speech to text works, do it. 

How is his narrative language? How is his self regulation? 

[PeterPan]

The good OTs who had my ds work on handwriting would do things with single letters like coding. So if you're going to write, maybe consider doing codes, crosswords, things with teeny tiny amounts at a time like that. 

For the lego kits, it worked well for me to sit opposite him. Then he could look up/down and I could prompt him to check the orientation against the paper. It's like he needed to *feel* left/right and compare it to the visual to get it sorted in his brain. And we were doing BalavisX at the same time. 

I tried sitting beside him (to his left?) because they claim that's better for teaching left/right eye movements in writing/reading instruction. If you're doing that and it's not going well, maybe shake it up and try sitting opposite for some things.

[kbutton]

2 hours ago, PeterPan said:

Are you still getting OT? If you're not, you need it. If you are, you need a new OT. Yes probably retained reflexes and those glitch the visual development. Do a LOT MORE OT and then hit the dev. optom. and see if you still need vision work.

Yes to all…and no. If you don’t I’ve in an area where you have a lot of OTs to choose from, but you have access to a good vision therapy program, doing VT first might be better.

It all comes down to resource availability matched against the needs.

A good COVD will let you know what’s up and what can be done, and if you say you’re doing OT, will be able to set those priorities with you. In our area, we have a lot of OTs, but most are not hitting the niche stuff that the vision therapy people are doing. The vision therapist we used (no longer lives here), was laser focused on what she needed to provide in the context of local resources and where OT and VT overlap.

But yes, your OT strikes me as either not feeling able to speak up about side issues like vision and reflexes or else is not equipped to know about that particular interplay.

Oh, caveat I forgot to give…if your kid is hypermobile, all of this gets harder and mushier to parse out. 

[Sarah00]

3 hours ago, PeterPan said:

Are you still getting OT? If you're not, you need it. If you are, you need a new OT. Yes probably retained reflexes and those glitch the visual development. Do a LOT MORE OT and then hit the dev. optom. and see if you still need vision work.

My ds did the mixed dominance thing a lot time and he's diagnosed with ASD support level 2. He would assemble lego kits in mirror image because of the whole brain issue, so we did them a lot more to just keep work, working on it. And he got a LOT of OT. BalavisX is particularly good for this, and we got an OT who was the bomb at it. You can get the video and book and try to do it yourself. I'm just not that coordinated and probably never will be, lol. This OT could do all the stages, the most difficult stuff, and carry on a conversation and smile at the same time. 😂 

Yes, use tech. You're probably going to do psych evals and some point and they're probably going to diagnose some SLDs and more going on. You're right on track to do what works. If speech to text works, do it. 

How is his narrative language? How is his self regulation? 

Unfortunately, the OT I had was not able to help much with these issues (not the same OT that assessed him) and finding OTs in these speciality areas that are accepting patients is really difficult. 

BalavisX looks a lot like crossing the midline work. I have tried to do similar activities (actually many of the same) with my son myself but he couldn't even begin to do so many of them and I don't have the expertise to know what to do or how to help him when he's unable and far too demand avoidant for me to slowly take him there the motion. 

I don't know how or if I can get funding for OT for these issues (Canada) but I'll look into it - the funding for OT was for emotional regulation. 

Narrative language is ok - not great. Emotional regulation is poor - he's diagnosed with intermittent explosive disorder but is a whole lot less explosive than he was between 2-6.5. He still has frequent meltdowns and we live a very low key lifestyle now. I don't take him to stores at all. Demands are very low. 

He reads at a 5th grade level - haven't ever been concerned about convergence issues because of this but I know it's still a possibility. Comprehension is good if he paid attention...

[Sarah00]

3 hours ago, PeterPan said:

The good OTs who had my ds work on handwriting would do things with single letters like coding. So if you're going to write, maybe consider doing codes, crosswords, things with teeny tiny amounts at a time like that. 

For the lego kits, it worked well for me to sit opposite him. Then he could look up/down and I could prompt him to check the orientation against the paper. It's like he needed to *feel* left/right and compare it to the visual to get it sorted in his brain. And we were doing BalavisX at the same time. 

I tried sitting beside him (to his left?) because they claim that's better for teaching left/right eye movements in writing/reading instruction. If you're doing that and it's not going well, maybe shake it up and try sitting opposite for some things.

Thank you, I will look into those kinds of writing things. 

Re: Lego, he just built a large Lego police station with very occasional help - so no issues there. 

[Sarah00]

6 hours ago, kbutton said:

Besides the retained reflex possibility, I suggest a developmental vision exam. It looks at more than just acuity. Covd.org is where you find a developmental optometrist. These kinds of vision issues can easily fly under the radar—kids know only what they see; they don’t know what is not normal because it’s normal for them.

Mixed hand dominance seems to go with convergence issues. Both my son before vision therapy and another relative with convergence issues are right-hand dominant but do some tasks better left-handed to compensate for the convergence (no longer a factor for my son now that his is fixed).

Convergence issues caused lower than expected visual spatial scores on my son’s IQ test. After fixing the convergence issues, his entire non-verbal score increased dramatically (multiple standard deviations).

A good vision therapist will do bodywork (midline and often specific reflex work), and the sessions will be tailored to your child. It can make the OT work more effective in the long run.

I have looked into this a bit but it seems quite expensive and seems to require quite a bit of at home exercises, is that correct? 

A regular structure of exercises is very difficult unless they are game like - I could maybe institue a reward system though. 

I find your comment re: IQ very intriguing as he has very low non verbal IQ. 

[Sarah00]

15 hours ago, Rosie_0801 said:

It sounds like he needs crossing the midline work, and possibly has a retained palm reflex.

My daughter couldn't learn to write until I began teaching her joined letter pairs. I don't know why.

Can you explain further re: joined letter pairs? Do you mean double letter phonograms or something else? 

[PeterPan]

Has anyone ever talked with you about the possibility of an autism diagnosis? It could open up doors. We've had people in the past here on the boards who lived in Canada and some were in regions with disastrously hard access and some were in regions that were so gracious and helpful. 

I wish I had an easier answer than that, but a diagnosis and moving to a region with better access could be on the table. 

We can point you to resources, but you are going to WEAR YOURSELF OUT trying to do all this yourself. At the level of things you're describing, that is clinical and it needs a global diagnosis that opens doors to help you build a TEAM. 

What do you want to make happen? Do you want to do things yourself or do you want to get access to services? Do you need some empowerment? It sounds like you asked for help and people gave you bizarre, pigeonholed answers and blew you off, discounting the MYRIAD things going on. 

[PeterPan]

5 minutes ago, Sarah00 said:

I could maybe institue a reward system though. 

It won't last long and doesn't deal with the real issues. That's just typical ABA and it works better for lower IQ kids. 

I would save use of extrinsic motivators for your *biggest asks*, the things that are super important and hard to make happen. Instead look for *intrinsic motivators*. Those are going to be things like time with you, relationship, the pleasure of being together. 

 

[PeterPan]

https://www.amazon.com/Bal-Vis-X-eXercises-Brain-Body-Integration/dp/0990848809/ref=sr_1_1?crid=1G3AW612CHSZP&keywords=balavisx&qid=1701891996&sprefix=balavis%2Caps%2C97&sr=8-1

$25 and a can of tennis balls or squash balls, maybe some little beanbags. 

You mentioned the starting point was too high. This book will boil it WAY DOWN. It's literally going to start with hand over hand, him moving the beanbag from one hand to the other with support. They build to doing it being them, with rhthym, with speed, with distraction, with more movements (tossing, tossing in the air, tossing to another person), but it all starts very small, baby steps.

When my ds was that age, he could not do a single clap. Read my posts and see. If I tried to get my ds to clap, he would hyper clap (clap really fast a bunch). It was severe EF issues. We had to break it down very carefully into small steps. We would clap while I touched each letter on an alphabet puzzle, that kind of thing. Eventually we did some metronome work.

If you find a community that has more autism services, you get in with better therapies. I'm sorry it's hard. You're in the worst stage, the hiding stage where your kid is home and nobody is listening and they're blaming you for stuff that isn't your fault. This is not normal stuff parents should have to deal with or somehow teach out, sigh.

[Sarah00]

Just now, PeterPan said:

Has anyone ever talked with you about the possibility of an autism diagnosis? It could open up doors. We've had people in the past here on the boards who lived in Canada and some were in regions with disastrously hard access and some were in regions that were so gracious and helpful. 

I wish I had an easier answer than that, but a diagnosis and moving to a region with better access could be on the table. 

We can point you to resources, but you are going to WEAR YOURSELF OUT trying to do all this yourself. At the level of things you're describing, that is clinical and it needs a global diagnosis that opens doors to help you build a TEAM. 

What do you want to make happen? Do you want to do things yourself or do you want to get access to services? Do you need some empowerment? It sounds like you asked for help and people gave you bizarre, pigeonholed answers and blew you off, discounting the MYRIAD things going on. 

I'm not blowing it off, I'm explaining the difficulty of getting access to services like that here. I emailed 20 OTs before I found one accepting patients. Once I got her, my funding only allowed her to come once a month. This gave me absolutely zero help.

We live in the capital of Alberta. I spent $3000 to get a damn autism diagnoses to "open up services" (which by the way, it doesn't if there is no one to serve you). He was diagnosed with SPD and IED. I still got all the services an autistic child would get but a once a month OT who is 20th in line in terms of "fit" is not helping a whole lot.

I will try again (I said that before) but I don't have a lot of hope after my previous experience. Nor do I know how to get an OT to help with this kind of thing because it's usually funded through the school and the only OT provided to homeschoolers here is terrible (I've met with her explaining my issues) and she knows nothing about crossing the midline. 

[PeterPan]

1 minute ago, Sarah00 said:

Alberta.

I'm not sure which areas of Canada have better access. I'm sorry it's so hard. 

 

2 minutes ago, Sarah00 said:

I'm not blowing it off,

I meant it seems like OTHERS are blowing you off! You are clearly working so hard. I'm sorry the systems there are not opening up the way you need them to. 

[Sarah00]

12 minutes ago, PeterPan said:

It won't last long and doesn't deal with the real issues. That's just typical ABA and it works better for lower IQ kids. 

I would save use of extrinsic motivators for your *biggest asks*, the things that are super important and hard to make happen. Instead look for *intrinsic motivators*. Those are going to be things like time with you, relationship, the pleasure of being together. 

 

 

2 minutes ago, Sarah00 said:

by

 

10 minutes ago, PeterPan said:

https://www.amazon.com/Bal-Vis-X-eXercises-Brain-Body-Integration/dp/0990848809/ref=sr_1_1?crid=1G3AW612CHSZP&keywords=balavisx&qid=1701891996&sprefix=balavis%2Caps%2C97&sr=8-1

$25 and a can of tennis balls or squash balls, maybe some little beanbags. 

You mentioned the starting point was too high. This book will boil it WAY DOWN. It's literally going to start with hand over hand, him moving the beanbag from one hand to the other with support. They build to doing it being them, with rhthym, with speed, with distraction, with more movements (tossing, tossing in the air, tossing to another person), but it all starts very small, baby steps.

When my ds was that age, he could not do a single clap. Read my posts and see. If I tried to get my ds to clap, he would hyper clap (clap really fast a bunch). It was severe EF issues. We had to break it down very carefully into small steps. We would clap while I touched each letter on an alphabet puzzle, that kind of thing. Eventually we did some metronome work.

If you find a community that has more autism services, you get in with better therapies. I'm sorry it's hard. You're in the worst stage, the hiding stage where your kid is home and nobody is listening and they're blaming you for stuff that isn't your fault. This is not normal stuff parents should have to deal with or somehow teach out, sigh.

Thank you, this is great. Super helpful. I will give it a go if I can't find more OT services. 

[PeterPan]

In the US this is an issue too, with access in some states being better than others. Funding makes a difference, because without funding there will not be service providers. 

[Sarah00]

1 minute ago, PeterPan said:

I'm not sure which areas of Canada have better access. I'm sorry it's so hard. 

 

I meant it seems like OTHERS are blowing you off! You are clearly working so hard. I'm sorry the systems there are not opening up the way you need them to. 

Ha, thanks. Sorry maybe I misread! It's all very frustrating to say the least. 

[PeterPan]

1 minute ago, Sarah00 said:

 

 

Thank you, this is great. Super helpful. I will give it a go if I can't find more OT services. 

No one person can do it all! It's ok to start some things now, do what you can, and add services as you can.

Fwiw, I'd suggest you *assume* autism, and READ about autism. Just go ahead and assume. So everything you're considering, research how that works with autism to find the ins and outs. There will be tons on motivators and rewards. The most *interesting* thing in that vein is PowerCards. It's just a concept, not a book you need to buy, so if you google PowerCards you can learn all about them and ponder how to use the concept.

My ds, when he was most isolated, responding well to having a relative, a doting aunt, take him out. She would take him to the store with a TINY LIST of like maybe 5 things, and they would buy those 5 things at the grocery and pick up a toy in the last lane of the store. That is ABA at it's BEST, kwim? You're building relationships, building skill, doing it in a positive way. 

What's hard is when you go in with your whole list and are dragging him along. He's not going to be ready for that probably. But if the person is ONLY taking him out to build the skill, they might bind they can make progress. You could do that too, but again ask for help. Maybe there's someone loving in your lives who would do that for him. 🙂

[Sarah00]

19 minutes ago, PeterPan said:

I would save use of extrinsic motivators for your *biggest asks*, the things that are super important and hard to make happen. Instead look for *intrinsic motivators*. Those are going to be things like time with you, relationship, the pleasure of being together. 

 

Oh I don't. I have only used it once - for math - and it really helped turn things around. I made sure I was also putting in more effort in our relationship at the same time. For the most part, I just try to make things fun. 

[PeterPan]

Motivators can be more complex. When the behaviorist came to us, she taught us how to use *breaks* as intrinsic rewards and motivators. My ds liked to THROW things and throw them HARD when angry, so she got a bag of cotton balls and would have him throw cotton balls for breaks! She took what he was already doing and morphed it into something that helped him go forward. 

Fwiw, the explosion thing can be behavior, can be language, etc., and it can be chemistry. We were told to wait and we did. We were told everything that worked would CHANGE when he hit puberty, and we did. When we finally started Abilify it was a *miracle*. It's going to be ideal for the high methyl, COMT defect, dopamine receptor defect profiles (which you can see by running genetics). The vast percentage of kids with autism seem to have MTHFR defects, which is why they'll sort of get into a blame game when your kid is having behaviors. But if the behaviors are *partly* from chemistry, because of the less common profile (high methyls, not low, where high methyls ramp up dopamine), then it's really not fair to blame parents or say straight ABA/behavioralism or lots of sensory/OT work or anything else is the issue. At some point, chemistry ends up part of the solution. 

I don't know if I wish we hard started earlier and I don't know how young they're using it. I know they wanted to put my ds on methyl donor meds like Prozac and stimulants that would have been a very bad scenario, dangerous. I think they use Risperidone a lot, right? But is it an atypical antipsychotic? We never tried it. So far my ds has had very few noticeable side effects from the Abilify, but we keep the dose *low* and did thyroid labs to keep track of that and have a pdoc who helps us with other things too. 

I think I'm just putting a bug in your ear, not saying what to do. Getting the chemistry piece under control brought SO MUCH PEACE to our house. I kind of sense the level of stress you're living with, and the chemistry is part of that. But there's this reluctance to go at that with meds, which I get. We did supplements based on genetics for several years, which *helped* but was never perfect. Once he hit his teen years, he was DONE with that, lol. But yes, there are supplements you could do (to try to stabilize the methyl levels) that might help a bit. Or find a doc who specializes in that to guide you.

[Sarah00]

16 minutes ago, PeterPan said:

Motivators can be more complex. When the behaviorist came to us, she taught us how to use *breaks* as intrinsic rewards and motivators. My ds liked to THROW things and throw them HARD when angry, so she got a bag of cotton balls and would have him throw cotton balls for breaks! She took what he was already doing and morphed it into something that helped him go forward. 

Fwiw, the explosion thing can be behavior, can be language, etc., and it can be chemistry. We were told to wait and we did. We were told everything that worked would CHANGE when he hit puberty, and we did. When we finally started Abilify it was a *miracle*. It's going to be ideal for the high methyl, COMT defect, dopamine receptor defect profiles (which you can see by running genetics). The vast percentage of kids with autism seem to have MTHFR defects, which is why they'll sort of get into a blame game when your kid is having behaviors. But if the behaviors are *partly* from chemistry, because of the less common profile (high methyls, not low, where high methyls ramp up dopamine), then it's really not fair to blame parents or say straight ABA/behavioralism or lots of sensory/OT work or anything else is the issue. At some point, chemistry ends up part of the solution. 

I don't know if I wish we hard started earlier and I don't know how young they're using it. I know they wanted to put my ds on methyl donor meds like Prozac and stimulants that would have been a very bad scenario, dangerous. I think they use Risperidone a lot, right? But is it an atypical antipsychotic? We never tried it. So far my ds has had very few noticeable side effects from the Abilify, but we keep the dose *low* and did thyroid labs to keep track of that and have a pdoc who helps us with other things too. 

I think I'm just putting a bug in your ear, not saying what to do. Getting the chemistry piece under control brought SO MUCH PEACE to our house. I kind of sense the level of stress you're living with, and the chemistry is part of that. But there's this reluctance to go at that with meds, which I get. We did supplements based on genetics for several years, which *helped* but was never perfect. Once he hit his teen years, he was DONE with that, lol. But yes, there are supplements you could do (to try to stabilize the methyl levels) that might help a bit. Or find a doc who specializes in that to guide you.

Thank you, yes. I'm not opposed to the right drug - I do feel like we likely don't have all the right diagnosises which will hopefully help sorting out drugs in the future. For right now, we are okay but making a note of this. 

[PeterPan]

39 minutes ago, Sarah00 said:

Thank you, yes. I'm not opposed to the right drug - I do feel like we likely don't have all the right diagnosises which will hopefully help sorting out drugs in the future. For right now, we are okay but making a note of this. 

Abilify is on label for autism irritability, but again autism is not a homogenous thing. So no in that sense it might not help. Genetics might help because you could see his methylation pathways and look for patterns. Methylation is not that hard to understand and it directly affects serotonin, melatonin, and dopamine levels. There are some common foods like OJ that are *high methyl* that can aggravate methyl levels immensely for people already prone to high levels. And when methyls go up, dopamine goes up. Stimulant meds have *methyl* in the name. So when you know his methylation status you can predict what will go well or backfire. You could find he has COMT defects and that you could *tweak* his exposures to lower methyls. There could be patterns and little changes like that. Vitamin D uses up methyls as it's being processed, so those kids will do better on D or when in a lot of sunlight. It helps balance the methyls and hence the mood. So those can be easy, non-med things that can help.

[kbutton]

2 hours ago, Sarah00 said:

I have looked into this a bit but it seems quite expensive and seems to require quite a bit of at home exercises, is that correct? 

A regular structure of exercises is very difficult unless they are game like - I could maybe institue a reward system though. 

I find your comment re: IQ very intriguing as he has very low non verbal IQ. 

It was not more expensive than other therapies, but it’s not commonly covered by typical funding sources. If they do OT work as part, sometimes insurance will pro-rate coverage for that part of it.

Our therapist aimed for 10-15 minutes per day, five days per week, and she made it reasonably fun. My kids were both open to explanations of why they needed a specific therapy (not just for VT, but for all therapies), and they could use that to propel themselves to do it (lucky me!). For them, if they had negative behavior with any therapy, it meant it was either too hard, not the right solution, or not a good therapist. Obviously, we still had our moments. And sometimes, they needed serious explanation from a serious adult—my younger one’s SLP had conversations with him that she’d literally never had with anyone who wasn’t also an SLP, lol!

 

1 hour ago, PeterPan said:

 You're in the worst stage, the hiding stage where your kid is home and nobody is listening and they're blaming you for stuff that isn't your fault. This is not normal stuff parents should have to deal with or somehow teach out, sigh.

Well said!

And I think that the diagnoses this kid has gotten seem to ignore what might come to light if the reflexes and such were integrated—a child has to have some a serious compliance or intrinsic motivation to move past those issues and want to do activities that aggravate those retained reflexes. It just seems very obvious to me that those are in play—he sounds so incredibly uncomfortable.

 

1 hour ago, Sarah00 said:

Thank you, yes. I'm not opposed to the right drug - I do feel like we likely don't have all the right diagnosises which will hopefully help sorting out drugs in the future. For right now, we are okay but making a note of this. 

There is genetic testing not just to give you a list of genes but also to tell you how a person is likely to respond to these classes of meds and why. The reports are meaningful, and the company who does this has a program where you can submit paperwork and potentially get most of the cost covered. I can’t find the company name at the moment, but it might be GeneSight.

[Rosie_0801]

3 hours ago, Sarah00 said:

Can you explain further re: joined letter pairs? Do you mean double letter phonograms or something else? 

I mean writing two letters joined together. Cursive, but only two letters at a time instead of whole words because whole words are too much work for beginners. 

 

Have you explained his issues to him? 
Around here we have a strong family culture of "brains are weird." This disallows, as much as possible, the feeling that the autisms, learning difficulties etc are character flaws, because of course they aren't, but it's very easy for a kid to feel that way when someone is telling them they need fixing all the time. Dd struggled a lot with what thinking meant when she was small, trying to remember instead of puzzle something out. I would have to tell her that she won't find the answer in her hippocampus because it isn't there yet; this is a new thing we're learning so you need to use your prefrontal cortex.

Your son might be less demand avoidant if you tell him you know these activities are hard. They are hard because the two sides of his brain don't communicate very well and you can't just say "Hey Brain! Do this properly!" because brains can be a bit lazy about stuff like that. Sometimes you have to teach them new things stealthily and gradually build it into a habit so his brain can do the thing lazily instead of not do the thing lazily. Brains, after all, don't have phones to set reminders on.

[kbutton]

31 minutes ago, Rosie_0801 said:

Your son might be less demand avoidant if you tell him you know these activities are hard. They are hard because the two sides of his brain don't communicate very well and you can't just say "Hey Brain! Do this properly!" because brains can be a bit lazy about stuff like that. Sometimes you have to teach them new things stealthily and gradually build it into a habit so his brain can do the thing lazily instead of not do the thing lazily. Brains, after all, don't have phones to set reminders on

Well said

[Sarah00]

3 hours ago, Rosie_0801 said:

Around here we have a strong family culture of "brains are weird." This disallows, as much as possible, the feeling that the autisms, learning difficulties etc are character flaws, because of course they aren't, but it's very easy for a kid to feel that way when someone is telling them they need fixing all the time. Dd struggled a lot with what thinking meant when she was small, trying to remember instead of puzzle something out. I would have to tell her that she won't find the answer in her hippocampus because it isn't there yet; this is a new thing we're learning so you need to use your prefrontal cortex.

Your son might be less demand avoidant if you tell him you know these activities are hard. They are hard because the two sides of his brain don't communicate very well and you can't just say "Hey Brain! Do this properly!" because brains can be a bit lazy about stuff like that. Sometimes you have to teach them new things stealthily and gradually build it into a habit so his brain can do the thing lazily instead of not do the thing lazily. Brains, after all, don't have phones to set reminders on.

I love the way you put this. I've talked to him a bit about it but finding the right words is difficult so I appreciate this. 

I had actually given handwriting (and many other things) a break this past semester because I was tired of always trying to "fix things" about him which was hindering me from just enjoying him for being him. 

[PeterPan]

Or he's demand avoidant because he has anxiety and language issues. 

It can go both ways. Just saying I'm at a point in my life where I don't take accept a lot of "if you did better it would be better" type stuff. Some people ARE HARD to work with. It's why there are a range of placements in schools, a range of support levels for autism diagnoses, etc.

[Sarah00]

25 minutes ago, PeterPan said:

Or he's demand avoidant because he has anxiety and language issues. 

Demand avoidance is definitely from anxiety (at least in part). It's why we live a very low key lifestyle. It's not like he can help having a hard time. His anxiety has improved a lot - hopefully it continues in that direction with support. 

[PeterPan]

3 hours ago, Sarah00 said:

Demand avoidance is definitely from anxiety (at least in part). It's why we live a very low key lifestyle. It's not like he can help having a hard time. His anxiety has improved a lot - hopefully it continues in that direction with support. 

chemistry/meds

instructional/behavioral approaches

interoception/self awareness work 

For chemistry/meds, there are some vitamin issues that can directly affect anxiety/GABA levels. Zinc is an easy one to look for, easy to treat. Shows up on genetics as an issue with zinc receptor defects, results in anxiety and acne when low, and cheap cheap cheap. Not a complete cure but a surprisingly useful piece in our house.

There's another *much less common* nutrient cause of anxiety and it involves the processing of B6 to the active form. Symptoms include being unusual prone to dehydration/thirst and of course anxiety. Treatment is again quite easy, taking the active form of B6 which is P5P. You can identify that issue using genetics and there are some unusual markers you can read about in articles like https://www.mensahmedical.com/pyroluria-pyrrole-disorder/

For instructional/behavioral, you might as well go ahead and read about FBA just to wrap your brain around it. "Stop that Seemingly Senseless Behavior" is short and will get you what you need. I also particularly like the book "Stuck Strategies" which has a whole list of ways not to say NO. 😂 I think we talked about PowerCards earlier. Fwiw, all the books that people like to talk about here on the boards (collaborative problem solving, Green, etc.) are *nice in theory* but so not at the level we lived. There's a real difference between ASD1 pitb and ASD2 pitb. It's fine to read all kinds of things, but don't *feel like a failure* if you read something and it's not meeting you in your reality. It just means you need the next step up on tools. 

Jessica Minahan is crazy spot on.  https://jessicaminahan.com/ I attended a talk by her in person that finally validated all the crazy lengths I felt like I was going to to make things work. For her I suggest looking on youtube, as I think you'll find video from workshops she's done. Free learning. 🙂

For interoception/self awareness, Kelly Mahler has what you need. https://www.kelly-mahler.com/product/the-interoception-curriculum-a-step-bystep-guide-to-developing-mindful-self-regulation/

https://www.kelly-mahler.com/what-is-interoception/

And again, look on youtube because you're going to find all kinds of great videos by her. 

Working on interoception will not change chemistry, sigh, but it's still going to give you progress. It will get you a common language and get him *started* on being able to have a *chance* at being able to self-advocate. It's not enough to want to or have the prompt or the permission. We have to recognize our body signals and discover what they mean. And really, kids are surprising. Sometimes kids CRAVE things you wouldn't expect, and your dc might actually CRAVE the awareness building activities. It might not be as hard to get participation with those as it is some things.

The two systems that helped us for retained reflexes were Pyramid of Potential, which has a (hopefully) affordable video you can buy telling how to test and treat, and MNRI, which is much more involved and requires expensive training. If you can find an OT who got trained in MNRI, they will probably be worth the effort to connect with.

Edited December 8, 2023 by PeterPan

[kbutton]

16 hours ago, PeterPan said:

There's a real difference between ASD1 pitb and ASD2 pitb. It's fine to read all kinds of things, but don't *feel like a failure* if you read something and it's not meeting you in your reality. It just means you need the next step up on tools. 

Gosh, the second sentence applies to so many things in life!

Levels are a tool to help people have a common language and get supports. It’s like knowing what county someone lives in vs. what state, but it might not get you to the street address.

Someone can have peaks and valleys that don’t line up neatly with levels and/or their scores on various diagnostic tests.

[SFisher]

Hey!

my son has a bunch of overlaping symptoms with yours… his current diagnosis is 2e: gifted, written expression disorder, writing fluency deficit, working memory deficit, likely has hypermobile joints. His handwriting has persistently lagged behind his other skills. More than just lags… causes problems, keeps him from expressing his knowledge and ideas through writing. Lots of refusal. 

these ladies will help you explore diagnostic possibilities and therapies. But, I can help you with some practical stuff…

handwriting without tears… get a student work book and the teacher guidelines. There’s a bunch of multi sensory stuff in the teacher handbook that will feel more playful to your son. Using a laser pointer on a door, using a chalkboard, rhymes for formations. The handwriting lessons are nice and short also.

ciphers: my son loves to do games where he has to use a cipher and figure out an answer. With this, he only has to write one letter at a time. There’s no “written expression” involved. 

Work around the writing so it doesn’t keep him from learning other things. One frustrating thing about writing problems is that writing is part of nearly every other school subject. We used little wooden numbers from the craft store for many years for math. Or I would write numbers on circle stickers and he’d use those to answer math worksheets. For spelling, you can write for him, or use tiles. Scribing for him is totally OK if it keeps him engaged and not resisting.

For my son, Numbers clicked handwriting wise before letters. I suppose that is because there’s a smaller set of formations to master. Also, numbers don’t require spelling, grammar, punctuation, self expression. You could focus on just mastering number formation for a while. Depending on how he does with math concepts, this could be a confidence booster

read about working memory. There’s verbal and visual memory and his weakness may be in one or the other. What I’m noticing is that my son doesn’t realize he lost some info in his working memory. Then, people around him (us parents, teachers, even peers) assume that he is defiant, distracted or not listening. That’s a recipe for frustration and blowing up. Check for understanding - did he start the task that was asked of him? When he looks lost/distracted, Ask him if he can remember what he was supposed to be doing. If he loses something in his working memory, give him the info again. Use devices to help him - checklists, chore cards, physical objects that serve as reminders. Like yours, my child reads well, so lists help him. Shorten instructions. Create routines. Teach him how to compensate. I’ve been showing my son how to use a calendar for school. He also will forget what he’s supposed to be doing in the shower, we worked together making a list of showering tasks, laminated it and put it in the shower, now he showers independently and he knows that he could use that same strategy for some other hard multi step tasks.

Another thing might be to check in with your mindset and how you talk about weaknesses/disabilities to your kid. From personal experience… make sure your child is getting the message that you understand writing is hard for him. Accept it. Believe it. Look out for people who think he’s got a character problem, isn’t trying, is lazy, etc and do what you can to remove that feedback.  Be honest with your child that you don’t know why it is hard for him, but you are trying to understand why… you are observing, you are reading books, you are reaching out to experts, you are getting assessments. If you find a diagnosis or therapy that may help… explain why you want him to try it. Make sure he feels valued… whether or not he can write. Literally say “I’m going to love you whether you continue to struggle with writing or not”. Protect him from situations where people judge and devalue him. Some particular things that we’ve discussed multiple times: “you are not a finished product, you’re a work in progress” and “I am working to get you help, please be patient and we will find a way to help you”. You may already have a great perspective, but just wanted to pull this out in case you felt in panic / crisis management mode.

Edited December 13, 2023 by SFisher