Nothing worked because everything hurt

Sensory processing disorder has gotten the best of us today. Mr. Emmett woke up after a night filled with nightmares, completely overwhelmed. In his nightmares, he’s being eaten alive and can’t wake up.

Emmett’s daily life is often dictated by his sensory issues. Today was particularly bad because he woke up, already overloaded, and not standing a chance.

More often than not, Emmett will struggle with his clothes in the morning, but we can work through it. On these days, Emmett has enough resources in his coping bank account to help him through. Unfortunately, there are some mornings where this coping bank account is already overdrawn.

He was very clearly overdrawn this morning, and he wasn’t able to tolerate wearing a shirt.

We worked to help him through this from 7 AM – 8:35 AM, but nothing worked. The school said he could wear any shirt he needed to, even if it wasn’t dress code.

By the time we had to call it quits, and get Elliott to school, we had worked with over fifteen different shirts. Nothing worked, and everything hurt.

I’m now devoid of anything resembling motivation or energy.

Emmett ended up staying home, and I don’t like the idea of him missing school. At the same time, wearing a shirt is causing him extreme levels of distress today, and forcing him to wear one would be cruel.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
0 0 votes
Article Rating

Leave a Reply to JennyCancel reply

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

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

I’m guessing the nature of your sons’ disabilities is why they are given leeway into missing school.

The Spectrum of Life

Re where do you draw the one, I think you just know. At least that’s the case with my 2. Each day is different and their ASD reflects this, so some days you can work it out but the same issue the next and it’s just not gonna happen. Not sure if I’m making sense but as an asd parent you tune into them and get a feel for their coping abilities and how far you can push…

It’s an incredibly tough gig and having judgements such as how many school days are missed really doesn’t help.

kimmy gebhardt

I have a question- do you try to keep him in clothing during the summer or is summer clothing optional time? I’m curious if a break would be a good or bad thing, or would it even matter at all?

Kim

@spectrum of life- I brought up the days missed the other day; not out of judgment but because Emmett has missed about a month’s worth of school and I was wondering where the school (and State) drew the line. As it’s a charter school, I would be concerned that my child was going to be asked to leave so his spot could be given to a child who might attend more frequently and get a bigger benefit from it. The other concern was when would Ohio say ‘enough is enough’ and not allow him to pass to the next grade.

Jenny

The number is days is 42 Mr Gorski, not counting the times late and early pulls from school

Jenny

I”m not with the school for crying out loud. You put your entire life out there, i just counted. Nothing malicious, and not judging either. Just letting you know that it is quite a few days is all. You are busy and I”m sure have no idea how many there were.

Jenny

Surely you know what an algorithm is, I didn’t have to read every single post from the first day of school

Jimmy Rock

Wow, OK. Apparently somebody’s keeping the numbers…Anyway, sorry that the sensory issues won the day. Quick question though — you talked about drawing the line where you stop trying to work through it. What dictates where the line is drawn? Is it an amount of time? The severity of the reaction? Your knowledge of his potential sensory capacity based upon recent events? Your particular patience/tolerance level that day? I agree that there has to come a point where you can’t continue to force it. Just wondering how you determine what that point is – because I agree – the longer you try to work through it only to fall short and not achieve success, the worse off you may be.

mathewpenny648

I’m guessing the nature of your sons’ disabilities is why they are given leeway into missing school.

Rob Gorski

If that’s directed at me, I’m guessing that’s correct.

Rob Gorski

Great discussions everyone. 🙂

Kim

@spectrum of life- I brought up the days missed the other day; not out of judgment but because Emmett has missed about a month’s worth of school and I was wondering where the school (and State) drew the line. As it’s a charter school, I would be concerned that my child was going to be asked to leave so his spot could be given to a child who might attend more frequently and get a bigger benefit from it. The other concern was when would Ohio say ‘enough is enough’ and not allow him to pass to the next grade.

Rob Gorski

I know your question was genuine. As for the question itself….. Emmett’s in no danger being held back. Frankly, he could probably skip a grade academically. Socially, it’s a different story. I don’t know where the cutoff is and honestly, I never asked. I was just talking to Dr. Pattie about this the other night. I would LOVE to have year round school. They get frequent, but shorter breaks and school just keeps going. I think that’s a good idea but not easy to change to. As for losing his spot, he’s in no danger. Frankly, Emmett’s state testing scores are very high and that’s very important for the school. They also completely understand and know what’s going on.

The Spectrum of Life

Re where do you draw the one, I think you just know. At least that’s the case with my 2. Each day is different and their ASD reflects this, so some days you can work it out but the same issue the next and it’s just not gonna happen. Not sure if I’m making sense but as an asd parent you tune into them and get a feel for their coping abilities and how far you can push…

It’s an incredibly tough gig and having judgements such as how many school days are missed really doesn’t help.

Rob Gorski

Thanks Sophie,

For the record, Kim’s question about days missed is genuine. There are others that are meant to be judgemental and those are very frustrating. I can totally relate to your experience. It’s difficult to put into words and it’s very fluid. There are rarely if ever, simple solutions. 🙂

kimmy gebhardt

I have a question- do you try to keep him in clothing during the summer or is summer clothing optional time? I’m curious if a break would be a good or bad thing, or would it even matter at all?

Rob Gorski

You weren’t caught in the spam filter today… Progress 🙂

We work with him all year long, but when he’s out of school, we can back off a little more. We try to stay consistent because that only helps to make things easier for him moving forward..

Jimmy Rock

Wow, OK. Apparently somebody’s keeping the numbers…Anyway, sorry that the sensory issues won the day. Quick question though — you talked about drawing the line where you stop trying to work through it. What dictates where the line is drawn? Is it an amount of time? The severity of the reaction? Your knowledge of his potential sensory capacity based upon recent events? Your particular patience/tolerance level that day? I agree that there has to come a point where you can’t continue to force it. Just wondering how you determine what that point is – because I agree – the longer you try to work through it only to fall short and not achieve success, the worse off you may be.

Rob Gorski

I’ve no idea who that is. Even if it is 42 days, it’s 42 days. It is what it is and all I can say is we’re doing our best to help him through this.

As to your question, the answer is probably all of the above. Perhaps not all at the same time but each one is a reason we would likely draw the line.

Today for example, we knew he had a bad night. We knew how badly he wanted to be at school and so we worked with him for about 90 minutes all together. He reaches a point where he feels ashamed, and like he’s letting us down. We can also see how much he’s trying to work through it, but just can’t. We feel that’s a good place to draw the line, at least today. Other days, the line may be when he dry heaves.

We do push his limits but we also know that if we push him too far, the next time we have this problem, he’s going to be less willing to work through it.

I’m not sure how else to describe it. I think as parents, we know what our kids limits are and we have to be very careful because the ends doesn’t always justify the means.

Great question Jimmy…

Jenny

The number is days is 42 Mr Gorski, not counting the times late and early pulls from school

Rob Gorski

What? I’m sorry, do I know you? How could you possibly know that?

Rob Gorski

Apparently they come in three’s. The above comment about the number of days Emmett has missed is fictional and posted my what I would say as Internet stalker or troll at the very least. This is her third identity and fourth email address I believe.

Why is this being mentioned? Because the principal at my kids school read the comment and was very upset because if that was from someone within the school, it was actionable and in breach of hippa laws.

There are a few staff members that share that first name and so this was taken very seriously. As a result of him reading the comment, he’s had to address the entire staff to remind them that posting this kind of information violates hippa laws and they will get in serious trouble.

I don’t personally care one way or the other because I would share the number myself if I knew what it was. Many people read this blog, including staff at the school. Posting things like this can have a real impact on people.

I’ve attached a screeshot proving who this comment was made by, but I’ve redacted part of the email address. You’ll notice that all the IP addresses are the same and the email addresses follow a pattern.

Get a life. Exercise some self-control and move on..

Jenny

I”m not with the school for crying out loud. You put your entire life out there, i just counted. Nothing malicious, and not judging either. Just letting you know that it is quite a few days is all. You are busy and I”m sure have no idea how many there were.

Rob Gorski

Whatever helps you sleep at night. You’re not trying to help at all and you can’t just go back and count. You would have to search through hundreds and hundreds of posts, reading each and trying to figure out a day count. I wouldn’t even do that.

The way you presented the comment sure made the school think it was one of their staff… Have a great day, but have it somewhere else.

Jenny

Surely you know what an algorithm is, I didn’t have to read every single post from the first day of school

Rob Gorski

yeah, I do. Please feel free to share that algorithm.Your number is way off so your methods are flawed..