These sensory issues are absolutely killing me as a parent and I’m not even the one having to physically experience them. I can’t image what it’s like for Emmett.
We tried and tried to help Emmett work through his sensitivity to anything on his feet but we were unable to make it happen this morning.
It’s extremely frustrating for Lizze and I as parents because we know that he needs to be at school. It’s even more frustrating for Emmett because he wants to be at school but his body is making that very, very difficult for him.
We were somewhat pressed for time this morning because we were already late, Elliott needed to get to school and Gavin needed to have his bloodwork done first thing.
The bottom line is that Emmett didn’t make it to school today.
When I dropped Elliott off, I spoke with the school and no one’s overly concerned about him missing right now because this isn’t something anyone has any control over.
Academically he so far ahead, these misses don’t impact him one way or the other. There’s no social concerns either.
Having said that, this is still an obvious problem and in the back of my mind, I’m worried about things like truancy or how he’s going to manage this when he gets older.
Interesting. My girlfriend’s son has sensory processing issues. He’s grown now, but she was just mentioning to me that sometimes when combing his hair when he was young, he got upset and it hurt him and he cried and cried. Reminded me of your situation.
This is such a major problem because it’s an invisible condition that is very difficult to understand….
Did you have issues with him yesterday morning when he had a field trip? I know that his issues are very real, but it really does seem like he has at least a tiny bit of control over them. It might be worth setting new ‘daytime’ rules in the house for when he’s home for sensory issues. You can stay home, but there is no tablet or tv until the time when school is out. And I asked this before and it got buried in the comments, but when he’s home, why not have school at home? Surely his teachers could throw together the day’s work for him so that he is still moving forward. Being ahead will eventually become being left behind when you’re missing an average of a day a week. If nothing else, get some workbooks and have them on hand for when he’s not in school. Just something so that he realizes that being at home is not going to be a free day.
Hey Kim, I hope it’s okay to nest this comment under yours – I can’t seem to post otherwise. I love all of your suggestions, by the way!
I know this has been frustrating and exhausting for all of you.
I’m wondering if, while this is partially due to SPD, is it possible that – whether consciously or otherwise – what started as SPD has morphed into a combination of that, plus the “secondary gain” of all of the attention that he gets in the morning/the bag of tricks, and the attention and whatever other benefits he gains from missing school?
I understand he enjoys school very much, but having more time (and with only one other sibling) with you and Lizze might be a lot more valuable to him right now. I know you’re trying to minimize some of fun and games at home when he’s not going to school. But I’m also just very curious about the different kinds of attention and other gains from staying home too. Also, has he always been unwilling (unable?) to go barefoot outside or indoors but outside the home?
Interesting suggestion by Gracie above. Although my guess would be that there’s not really an attention seeking component here, I do think, generally speaking, that Gracie (and Kim too) is on to something regarding your approach to Emmett’s sensory challenges. If you feel you’re doing all you can with the SPD, then turn your focus to the component of the challenge which may be within your control to help him change — the psychological component. I know you have a handle on the understanding of SPD, and because of that understanding, the fact that you would resort, at times, to attempts at bribery, suggests that you know, or at the very least, think, that Emmett might be able to overcome his sensory issues, at least at times, if motivated the right way. When he’s having difficulties with socks and shoes, it always seems like (obviously I don’t know what happens all the time, but this is my impression based upon the information you provide) that you and/or Lizze are right there by his side, helping him through it. What would happen if you gave him some sort of motivation to get his socks and shoes on, left the room, and let him figure it out? Might give him a little independence and perhaps a desire to have some ownership of his challenges. Also sometimes, if you push too hard in trying to get past the pressing SPD problem of the moment, the child can reach a “point of no return” where he or she is psyched out, is completely frustrated and upset, and there’s no way in hell that anything further can or should be attempted.
And be careful presuming that there are no social concerns because of this. Not just talking about missing school, but the psychological impact on a kid knowing that he can’t do something “so simple” as putting on socks and shoes when everyone else can, etc. could have an effect socially, particularly when he knows that it causes him to miss out on things. If it doesn’t, it doesn’t, and that’s great. Just saying to watch for it.
Okay. It’s like this. Emmett has $100 to spend on coping throughout the day. Every night he goes to sleep and the balance is generally replenished. It’s these days that he tends to do okay with sensory stuff because he’s got resources to cope.
There are however, some days where we wakes up bankrupt and there’s absolutely nothing that can be done to help him through it. These are days like today.
As I mentioned above, they are more frequent lately but still the exception to the rule.
You’re right about the psychological impact and that’s why we handle it the way we do. He’s so upset with himself because he can’t do this seemingly simple task…
The $100 analogy is an interesting way to explain it but I’m not sure it applies in its entirety. It doesn’t seem like you’ve ever described his sensory experience as a gradual wearing down over the course of the day until he succumbs to sensory issues. In other words, it doesn’t seem like Emmett is more likely to experience sensory issues later in the day, when his “money” would more likely to be depleted from the “expenses” of the day.
Rather, I think it is as you’ve generally described – you simply don’t know which morning will be a tough one for him.
It is interesting that you use the analogy though – sensory issues can be compounded by the cumulative effect of sensory overload, which would mean that it would be a good idea to engage sensory related activities/exercises throughout the day and before bedtime.
I know how frustrating this is for Emmett – and you. And I understand that you’ve worked hard to help him, and I know that sometimes these issues are just not resolvable. But it really does seem like there just this level of acceptance that this is just how it is. Is that resignment based on your OT’s opinion? Has your OT given up on the possibilty of the existence of any other approaches as far as home strategies? If so, have you spoken to more than one OT?
No. There are nights when he doesn’t sleep or has bad dreams and wakes up depleted before even starting the day. Do a Google search for fibromyalgia and spoons. That’s a really good example…
No one’s given up on anything but the situation is as I describe it. We fight one battle at a time and sometimes live minute to minute. What we’ve accepted is that Emmett comes with certain challenges and he may or may not overcome them at some point.
Our OT is top notch. We’re at Akron Children’s Hospital and there simply isn’t any better in our part of the state.
Thanks for the response, although I think you might have missed my point. I’m familiar with the spoon theory which is basically the same as your $100 analogy. I’m not doubting in any way that some mornings he wakes up already “depleted”, as it were.
That’s good you have a top notch OT. I wasn’t challenging the quality or ability of your OT. If you’re satisfied with your OT that’s awesome. Just keep in mind that even the top 2 people in any discipline might look at the same issue with a different perspective.
And of course there’s a big distinction between accepting a child’s challenges for what they are and giving up on working on them. I wasn’t accusing you of “giving up.” I acknowleged that “sometimes these issues are just not resolvable.”
But if you have reached that point of acceptance, what do you tell your child so as to try to ease his frustration? What are you teaching him about accepting and taking ownership of his challenges? What about his feelings about frustrating his parents with his challenges (even if you try to hide it I’d bet he sees it), realizing he’s holding up his whole family’s morning, etc.?
Rob, don’t feel compelled to comment again. I just think it’s good you write about these issues. I think in this age of emerging autism awareness I think the sensory processing component is still one of the least understood by the general public.
This has been an issue since he was born. It’s very consistent. There’s no attention seeking anything here though. He really wants to be at school and we usually try for at least an hour or so. Sometimes it works and other time it doesn’t.
Not working through it is becoming more common but still the exception to the rule.
That’s a good idea. He doesn’t think it’s fun and games though. He doesn’t want to be home. He just can’t wear anything on his feet.
Interesting. My girlfriend’s son has sensory processing issues. He’s grown now, but she was just mentioning to me that sometimes when combing his hair when he was young, he got upset and it hurt him and he cried and cried. Reminded me of your situation.
This is such a major problem because it’s an invisible condition that is very difficult to understand….
Did you have issues with him yesterday morning when he had a field trip? I know that his issues are very real, but it really does seem like he has at least a tiny bit of control over them. It might be worth setting new ‘daytime’ rules in the house for when he’s home for sensory issues. You can stay home, but there is no tablet or tv until the time when school is out. And I asked this before and it got buried in the comments, but when he’s home, why not have school at home? Surely his teachers could throw together the day’s work for him so that he is still moving forward. Being ahead will eventually become being left behind when you’re missing an average of a day a week. If nothing else, get some workbooks and have them on hand for when he’s not in school. Just something so that he realizes that being at home is not going to be a free day.
Hey Kim, I hope it’s okay to nest this comment under yours – I can’t seem to post otherwise. I love all of your suggestions, by the way!
I know this has been frustrating and exhausting for all of you.
I’m wondering if, while this is partially due to SPD, is it possible that – whether consciously or otherwise – what started as SPD has morphed into a combination of that, plus the “secondary gain” of all of the attention that he gets in the morning/the bag of tricks, and the attention and whatever other benefits he gains from missing school?
I understand he enjoys school very much, but having more time (and with only one other sibling) with you and Lizze might be a lot more valuable to him right now. I know you’re trying to minimize some of fun and games at home when he’s not going to school. But I’m also just very curious about the different kinds of attention and other gains from staying home too. Also, has he always been unwilling (unable?) to go barefoot outside or indoors but outside the home?
Interesting suggestion by Gracie above. Although my guess would be that there’s not really an attention seeking component here, I do think, generally speaking, that Gracie (and Kim too) is on to something regarding your approach to Emmett’s sensory challenges. If you feel you’re doing all you can with the SPD, then turn your focus to the component of the challenge which may be within your control to help him change — the psychological component. I know you have a handle on the understanding of SPD, and because of that understanding, the fact that you would resort, at times, to attempts at bribery, suggests that you know, or at the very least, think, that Emmett might be able to overcome his sensory issues, at least at times, if motivated the right way. When he’s having difficulties with socks and shoes, it always seems like (obviously I don’t know what happens all the time, but this is my impression based upon the information you provide) that you and/or Lizze are right there by his side, helping him through it. What would happen if you gave him some sort of motivation to get his socks and shoes on, left the room, and let him figure it out? Might give him a little independence and perhaps a desire to have some ownership of his challenges. Also sometimes, if you push too hard in trying to get past the pressing SPD problem of the moment, the child can reach a “point of no return” where he or she is psyched out, is completely frustrated and upset, and there’s no way in hell that anything further can or should be attempted.
And be careful presuming that there are no social concerns because of this. Not just talking about missing school, but the psychological impact on a kid knowing that he can’t do something “so simple” as putting on socks and shoes when everyone else can, etc. could have an effect socially, particularly when he knows that it causes him to miss out on things. If it doesn’t, it doesn’t, and that’s great. Just saying to watch for it.
Okay. It’s like this. Emmett has $100 to spend on coping throughout the day. Every night he goes to sleep and the balance is generally replenished. It’s these days that he tends to do okay with sensory stuff because he’s got resources to cope.
There are however, some days where we wakes up bankrupt and there’s absolutely nothing that can be done to help him through it. These are days like today.
As I mentioned above, they are more frequent lately but still the exception to the rule.
You’re right about the psychological impact and that’s why we handle it the way we do. He’s so upset with himself because he can’t do this seemingly simple task…
The $100 analogy is an interesting way to explain it but I’m not sure it applies in its entirety. It doesn’t seem like you’ve ever described his sensory experience as a gradual wearing down over the course of the day until he succumbs to sensory issues. In other words, it doesn’t seem like Emmett is more likely to experience sensory issues later in the day, when his “money” would more likely to be depleted from the “expenses” of the day.
Rather, I think it is as you’ve generally described – you simply don’t know which morning will be a tough one for him.
It is interesting that you use the analogy though – sensory issues can be compounded by the cumulative effect of sensory overload, which would mean that it would be a good idea to engage sensory related activities/exercises throughout the day and before bedtime.
I know how frustrating this is for Emmett – and you. And I understand that you’ve worked hard to help him, and I know that sometimes these issues are just not resolvable. But it really does seem like there just this level of acceptance that this is just how it is. Is that resignment based on your OT’s opinion? Has your OT given up on the possibilty of the existence of any other approaches as far as home strategies? If so, have you spoken to more than one OT?
No. There are nights when he doesn’t sleep or has bad dreams and wakes up depleted before even starting the day. Do a Google search for fibromyalgia and spoons. That’s a really good example…
No one’s given up on anything but the situation is as I describe it. We fight one battle at a time and sometimes live minute to minute. What we’ve accepted is that Emmett comes with certain challenges and he may or may not overcome them at some point.
Our OT is top notch. We’re at Akron Children’s Hospital and there simply isn’t any better in our part of the state.
Thanks for the response, although I think you might have missed my point. I’m familiar with the spoon theory which is basically the same as your $100 analogy. I’m not doubting in any way that some mornings he wakes up already “depleted”, as it were.
That’s good you have a top notch OT. I wasn’t challenging the quality or ability of your OT. If you’re satisfied with your OT that’s awesome. Just keep in mind that even the top 2 people in any discipline might look at the same issue with a different perspective.
And of course there’s a big distinction between accepting a child’s challenges for what they are and giving up on working on them. I wasn’t accusing you of “giving up.” I acknowleged that “sometimes these issues are just not resolvable.”
But if you have reached that point of acceptance, what do you tell your child so as to try to ease his frustration? What are you teaching him about accepting and taking ownership of his challenges? What about his feelings about frustrating his parents with his challenges (even if you try to hide it I’d bet he sees it), realizing he’s holding up his whole family’s morning, etc.?
Rob, don’t feel compelled to comment again. I just think it’s good you write about these issues. I think in this age of emerging autism awareness I think the sensory processing component is still one of the least understood by the general public.
This has been an issue since he was born. It’s very consistent. There’s no attention seeking anything here though. He really wants to be at school and we usually try for at least an hour or so. Sometimes it works and other time it doesn’t.
Not working through it is becoming more common but still the exception to the rule.
That’s a good idea. He doesn’t think it’s fun and games though. He doesn’t want to be home. He just can’t wear anything on his feet.