Sometimes it’s hard to keep moving forward – Page 2

Sometimes it’s hard to keep moving forward


We once again tried for almost ninety minutes, and got nowhere. 

He tried so hard and willingly put on every shirt we gave him to try on. Unfortunately, all of them have seams in the shoulders and that’s what is bothering him. 

The longer this went on, the more distress he was experiencing. 

We spoke with the school again this morning and explained what was happening. They understood and again told us that he can wear anything he wants. 

His school work was sent home and will be completed over the weekend. 

We were supposed to go to my aunt and uncle house tonight to celebrate my cousins graduation. Emmett was still unable to wear a shirt and so we were unable to attend. They wouldn’t have cared in the slightest, if he didn’t wear a shirt. The problem is that Emmett will not set foot outside of the house, without a shirt on. He’s embarrassed, especially because of the reason he can’t wear one. 

Another day, another problem that has seemingly defeated us again. We were successful in the sense that everyone tried their best, but our best just wasn’t good enough. 

I don’t know how many have experienced a similar issue, but I’m feeling completely demoralized. I’m exhausted and so ready for Summer break. We have two weeks to go and we’ll be done until the fall. 

Throughout the summer, we will continue working with him on these struggles, but it will be far less stressful because there isn’t as much at stake. 

I wish I could say this was a phase, but as an Autism parent, I don’t get to say that very often. 

0 0 votes
Article Rating
Subscribe
Notify of
guest


This site uses Akismet to reduce spam. Learn how your comment data is processed.

20 Comments
most voted
newest oldest
Inline Feedbacks
View all comments
bwiren

Can you turn a shirt inside out and see how it feels? Now, maybe this is stupid but if it’s the seams they wouldn’t bother him if they were on the outside. Maybe he would get picked on at school. But I’ve accidentally put on shirts inside out and no one noticed!

bwiren

And I am sensitive to wool and other scratchy fabrics. Maybe he could wear one kind of fabric over another.

reBECCA

I wish I had a suggestion for you, but it sounds honestly like a bad case of a kid having nerve pain and sensitivity, actually. Has the doctor checked levels of things like magnesium, calcium, B12 and B6, folic acid? Deficiencies in these areas can contribute to nervous system dysfunction, also zinc or copper being too high or too low (according to our Neuro)- my spectrum kid had low copper. You might want to try putting him on one of those special multivitamins for those on the spectrum- they will have good doses of the B vitamins in methylated forms, which makes it easier for his body to use. Most folks of the spectrum have genetic mutations like MTHFR and often COMT- it affects how the body can break down and utilize B vitamins like folic acid and b12. My ASD kid has both of these. tests for MTHFR can be run like regular bloodwork. We found COMT through 23 and me. Our Neurologist has recommended an ASD formulated multi vitamin for my kid on the spectrum and my other child with PANDAS. Kirkman Labs has some good ones, also Neurobiologix has some too.
One thing I do with my younger one especially is give him an Epsom salts bath during really rough days. Very calming to the nervous system and body.

Jimmy Rock

Sorry that he’s experiencing this. I’m sure you must get at least a little exasperated when people give you all sorts of suggestions which demonstrate that they have no comprehension of what’s going on, are painfully obvious that of course you already tried them, or are somehow insulting because they minimize the situation. I’m going to forge ahead anyway 🙂

You talk a lot about all the efforts you make with him to work through it together. How much time to you give him to work though it himself, alone, outside of your presence? You’ve mentioned that he feels like he’s disappointing you. Perhaps some time outside of your presence would reduce some of the pressure that he’s already putting on himself. Any thought given to putting 10 shirts out in his room, and just encouraging him to give it a try when he’s ready (and suggesting that he do some calming exercises – breathing, reading quietly, wrapping himself in a blanket, whatever – by himself- before trying a shirt). Or simply suggesting to him to give it a shot by himself without you or your wife there?

Sorry if that’s a suggestion that falls into one of the categories mentioned above, but Iike I said, it seems so much of what you describe about your efforts involve you constantly working with him. I’m not saying it’s the answer to the problem (obviously no quick fixes here) but perhaps some individual time to work though it could at least reduce the pressure on him, allow him to take ownership of the issue, and try to get through it on his own terms.

Good luck – I do have some understanding of how difficult this is.

Mindfulmon

I think it becomes a catch 22…poor guy. The more he tries the more energy he uses and then the symptoms are harder to manage causing more stress. I think sometimes as a parent you just have to say OK we are done for now we can try later. Sorry…it is hard to see your child struggle.

mathewpenny648

And I am sensitive to wool and other scratchy fabrics. Maybe he could wear one kind of fabric over another.

Rob Gorski

This is a good point. I’m not sure what material he would tolerate better at this point. I would think cotton would be the best bet but who knows… I sure don’t….

mathewpenny648

Can you turn a shirt inside out and see how it feels? Now, maybe this is stupid but if it’s the seams they wouldn’t bother him if they were on the outside. Maybe he would get picked on at school. But I’ve accidentally put on shirts inside out and no one noticed!

Rob Gorski

We actually tried that but “wearing a shirt inside out isn’t the right way to wear it”… His words not mine…

reBECCA

I wish I had a suggestion for you, but it sounds honestly like a bad case of a kid having nerve pain and sensitivity, actually. Has the doctor checked levels of things like magnesium, calcium, B12 and B6, folic acid? Deficiencies in these areas can contribute to nervous system dysfunction, also zinc or copper being too high or too low (according to our Neuro)- my spectrum kid had low copper. You might want to try putting him on one of those special multivitamins for those on the spectrum- they will have good doses of the B vitamins in methylated forms, which makes it easier for his body to use. Most folks of the spectrum have genetic mutations like MTHFR and often COMT- it affects how the body can break down and utilize B vitamins like folic acid and b12. My ASD kid has both of these. tests for MTHFR can be run like regular bloodwork. We found COMT through 23 and me. Our Neurologist has recommended an ASD formulated multi vitamin for my kid on the spectrum and my other child with PANDAS. Kirkman Labs has some good ones, also Neurobiologix has some too.
One thing I do with my younger one especially is give him an Epsom salts bath during really rough days. Very calming to the nervous system and body.

Rob Gorski

I think I’ll try the Epsom Salt baths. That’s a good idea. Tha Rebecca… ☺

Mindfulmon

I think it becomes a catch 22…poor guy. The more he tries the more energy he uses and then the symptoms are harder to manage causing more stress. I think sometimes as a parent you just have to say OK we are done for now we can try later. Sorry…it is hard to see your child struggle.

Rob Gorski

You are exactly right and I’ve never thought of describing it that way. That’s perfectly accurate and why we stop before pushing him too far.

Jimmy Rock

Sorry that he’s experiencing this. I’m sure you must get at least a little exasperated when people give you all sorts of suggestions which demonstrate that they have no comprehension of what’s going on, are painfully obvious that of course you already tried them, or are somehow insulting because they minimize the situation. I’m going to forge ahead anyway 🙂

You talk a lot about all the efforts you make with him to work through it together. How much time to you give him to work though it himself, alone, outside of your presence? You’ve mentioned that he feels like he’s disappointing you. Perhaps some time outside of your presence would reduce some of the pressure that he’s already putting on himself. Any thought given to putting 10 shirts out in his room, and just encouraging him to give it a try when he’s ready (and suggesting that he do some calming exercises – breathing, reading quietly, wrapping himself in a blanket, whatever – by himself- before trying a shirt). Or simply suggesting to him to give it a shot by himself without you or your wife there?

Sorry if that’s a suggestion that falls into one of the categories mentioned above, but Iike I said, it seems so much of what you describe about your efforts involve you constantly working with him. I’m not saying it’s the answer to the problem (obviously no quick fixes here) but perhaps some individual time to work though it could at least reduce the pressure on him, allow him to take ownership of the issue, and try to get through it on his own terms.

Good luck – I do have some understanding of how difficult this is.

Rob Gorski

Those are all good suggestions. We try things like that, some are the exact same and others are sorta modified. The problem is that he’s very easily overwhelmed and laying out a bunch of shirts would be counterproductive.

As always, I do appreciate your support, understanding and willingness to share ideas… ☺

20
0
Would love your thoughts, please comment.x
()
x