Hi all,

This forum seems so quiet, and I would really appreciate it if someone could come back to me, I've tried to google this but there's just not much info.

We fired our first OT after she told the teacher my son's problems in class aren't sensory and there's something else "wrong" with him - after she told us the opposite, stating the SIPT shows huge modulation problems.

Our new OT (we are only starting with her today, I just met with her once to go over previous assessment results) - said that kids with modulation problems will inevitably hit sensory overload, and then their central nervous system will shut down and they will seem to daydream / not engage. She says these are often the kids you see in almost a "zombie-like" state.

This matches what the teacher has said about my son, who after Wednesday, just doesn't do anything at all in class. She says it's not an academic problem, as academically he's ahead of his class. It's just that he doesn't perform at all.

Yesterday I could tell he was hitting major overload. He wasn't registering even half of what I was saying to him and replied mostly in grunts. He will automatically reply "I don't know", and will then plead with me to stop asking questions. If I ask how school is, he will automatically say "fine" even if it wasn't fine.

Yesterday is the worst I've seen this in him though. First in the morning it was like everyhting I was saying was ricocheting. On thursday evenings he has a gymnastics class which he absolutely loves, but afterwards he seemed to go straight back into his "funk". When I asked him if he had fun he said I don't know, and then when I tried to rephrase and asked if he'd enjoyed it he put his head in his hands and again asked me to stop asking so many questions. (Please don't think I am interrogating this poor child, I usually ask 3 questions after school - how was his day? What did he like most? What did he not enjoy - that's it.)

We then went to a supermarket to pick up some stuff, and when we pulled into the parking lot he got very upset and almost angry and kept saying "Why are people going to eat at Breakfast!?" I had to work out that he had meant a restaurant we usually eat breakfast at - when we do eat there, which isn't often. I then had to ask him if he meant the restaurant - it took 3 attempts to get him to hear me. I then had to state 5 times that that restaurant also serves supper/dinner food. He had again put his head in his hands and after the 5th time went quiet and then just said "really?". He seemed to calm down after that. (I did manage to stay calm and talk quietly through all this but it's not always the case, especially if I have the girls with me as well, but I'm trying to be more sensitive to his overloading and talking quietly and trying very hard not to raise my voice and talk in a calm way.)

Is this normal!?!??!?! Is THIS what the OT actually meant about a CNS shut down??? It seems like nothing gets through to him, and that thinking is really really hard and things that he can and does say often and easily become really hard for him.

He is bright (in South Africa the kids only start to learn to read in grade 1, at age 6 or 7 - he learnt last year, with my helping with sight words that aren't phonetic, and is now already on level 4 readers and ahead of his class. He's also usually great with numbers though the disconnection he's experiencing with language when in an overloaded state seems to also affect this.)

I am completely stressed out. His sensory overload just increases as he gets further through the school week. he's in a class of 30 kids and the only available smaller classes are the remedial classes where they tell me the pace is super slow and he will get extremely bored very quickly.

They will start doing assessments from next week - ONLY on Fridays!!! This is the worst news for my boy. On mondays he's a star pupil (I'm told), and manages very well. By Wednesday the wheels are loose and by Thursday they are completely off.

Can anyone share some experience please, and let me know if there's anything that might help that we can do at home. I just know he needs a lot of help - he is just so miserable right now - and I don't know how to help him. We do sensory diet stuff but don't have a lot of time for this so I have to try do little bits of the exercises I think might help the most...

If anyone can shed some light on all this I would just appreciate it so much.

I can't ask for help from the teacher, she's told me she "knows all about" sensory integration and in her opinion based on her experience, his issues are not sensory. She's pushing for ADD assessments (he just did one at the end of last year, which showed no evidence of ADD or any other learning problems!) and medication. She also refuses to read any information I send into school because she claims she's reading stuff she "already knows". aaarrrrrrrrrrrrrrrrrrrrrrrggggh.

Thanks in advance.

1. When can you get him a new teacher and what can you do to make sure the new teacher will take his issues seriously?

2. At home, and if you can at school because you don't have to put it in terms of "sensory", something simple that might help (knowing that that description matches me well), is when open ended questions are too hard to answer, give choices. "What do you want for dinner?" might be too hard to process while dealing with overload. No thoughts will come to mind. However, given options, something might sound better than something else. (Same thing for other questions, the trick is you want to make sure its still him answering and not you prompting answers that get chosen only because you said them)

3. In this state, its not just doing that's hard, its thinking that's hard. Thinking is hard, doing hurts. Knowing is hard. Everything is wrong.

4. This is in fact a shutdown. There are multiple styles of shutdown.

5. Has he been sleeping more?

6. Have the shutdowns been getting worse week to week?



When someone is in overload, you need to get them out of overload. When he's overloading at home because of school because school isn't taking him seriously, you need to find a way to without disrupting your schedule get him out of overload at home.

Shutdowns might not look as bad as a meltdown, but they can last longer, and they can compound more in terms of how people think. Meltdowns have more impact on others, shutdowns have a lot of impact within one's self if management methods aren't figured out.

So, my immediate suggestion is figure out a few things that calm him down and make a ritual of doing those immediately after coming home from school, and then after that go into the rest of the day. Make that part of the sensory diet, but make sure its fun.

For me that'd be something like give me some peppermint snack (because a snack is good for people in general and peppermint is good for me), and then wrap me up in my weighted blanket and play a game that I need to play while in my blanket.

And then after that we can see what state I'm in. Or what state he's in.

I don't know if that'd help but its my immediate response.

Hi TT,

1. This is very difficult. I'm told that his current teacher is the best in the school for his grade. The only other options with space in their classes are the remedial classes. We had to move him between schools every year for the past 3 years for various reasons, which isn't great for stability and letting him get used to one place and one group of kids. My cousin is a teacher and has sent me documents from the Department of Education that involve "inclusive" education being mandatory. So if the teacher doesn't start getting with the program soon I will ask for a meeting with her, the head of department, and if that still doesn't help, then with the headmaster, and if that still doesn't help, then with the Department of Education. I have asked the teacher for contact details for the person in charge of the Inclusive education program at the school but haven't got an answer. If I still don't have one this afternoon I will phone the HOD.

2. I'm so glad to hear that! I have somehow already started doing this. If I can see he's having trouble thinking about his answers I'll make suggestions - like for what did he like most, I'll ask did they do a project or paint or colour something or cut and glue something, or did they do games in ball skills (phys ed). or did he have fun on the playground at break time. For supper, I try to do the same, offering suggestions of things I know he will usually eat. When he's really not coping I try only give him 2 choices between his favourites. You are right though that it gets tricky, especially with school stuff, to know whether he's just nodding or agreeing because something sounds plausible as an activity he would have done at school, or whether he's agreeing because they really did do it.

3. It just breaks my heart to know how hard this must be for him. And that the people at school are not seeing it

4. If you are able - please can you describe various shut-downs, so I know what to look for and can better understand what is going on and try find ways to help him?

5. ummm... not that I've noticed. We try to get all our kids into bed by 7pm though so maybe he's already getting enough sleep?

6. Yes, he is definitely getting worse!!! He has never been as "bad" as he has been this year. There have been a couple of reactions in social situations which were really not ok and I find it just so HARD to try placate people when their 3 year old just started screaming next to my son and then decided they wanted to wrestle and pushed him as well, and then my son pushes back to get some space and they completely blow up because my son is older/bigger and "should know better". He DOES frigging know better, but stuff like this is just impossible at the moment. We don't ever say it's ok for him to react like this, but we can't exactly punish him to the ends of the earth for something he did as a result of SPD/SMD. And no, I'm not writing everyhting off as SPD-related, because I can tell the difference, most times, and when I can't some careful questioning usually gives the answer I need to know...

Can I ask why you're asking if they're getting worse week to week??? Is there a special significance to this?

Our new OT has recommended brushing 3 times a day at the major transitions (wake up, get home, bed time), and massages. He seems to react weirdly to all the stuff that should help for tactile - he liked the light brush she did on him first, and didn't like the deep brush and said afterwards his other arm felt "better" than the brushed arm... But there were things she did (like make a sandwich, etc) that I want to start doing at home.

I think you have a great point and I need to leave him be after we get home and let him regroup before asking any questions and about homework etc.

I've found a lady to make him a weighted blanket, and ordered one!!! Just waiting for weighted beads to come into the one place so I can pass these onto her and we can get that organised. Can't wait for this!

Ugh the biggest obstacle at the moment is that with 2 other kids age 3 and 1, hometime is often really noisy as everyone is tired and hungry after a long day. It's hard to give him the quiet I'm sure he needs. But I'm setting up my old iPhone with calming music and thinking we need to give him 10minutes of listening while we settle the girls and hopefully get the house into a quiet-zone...

He seems in general to be having less meltdowns (I think maybe because I've gotten better at seeing them coming and heading them off), but the shut-downs are becoming a huge problem.

He's building up, and not resetting completely over the weekend. He's resetting enough to cope, but he's in a pattern where he's not managing to cope and stuff is getting worse within the day, and after school it gets somewhat better, but not enough for the next day.

Over the weekend he gets enough for Monday to be good, but he's still building up overload. As stuff is for him until you get stuff figured out for him (not necessarily in school), he'll just keep getting worse, because he's never managing to fully recover.

Some of us get overloaded enough that we take this path. I did this too long.

Good news for you is that figuring out how to help him now will have a huge effect on him. Getting him help now, which you ARE doing, is the right time to do it.

He sounds like he's at the right stage where he's not gotten so overloaded that it'll be harder to help him with the longer term build up. So, as you work on the things to help, you might get to see more extreme changes. Not right away, but as stuff gets working in his sensory system.

But, it sounds like he both is particularly prone to the overloading building up path, and isn't too far along it. The fact that he's not too far along it is good news for you.

Thanks TT!

I've started doing joint compressions and made him a heavy "thing" (homemade weighted lap-pad). These seem to be helping him while we wait for the weighted blanket. I've even told him to put the weighted lap-pad on his chest while he falls asleep. It obviously falls off, but I'll try anything!

It really makes me so sad to hear what kind of cycle he's in. I wish I had taken this more seriously early on and tackled it more agressively, but the first OT we saw was nowhere near "great" and made it sound like it was no big deal at all. The more I read and learn, the more I realise how wrong that opinion is. I'll never get why some people go into careers that they really shouldn't have, especially teachers and therapists!!

The good news is that he seems to have settled well with the new OT who has said that we should really start seeing a difference in 6 weeks. If there's no difference, it means something else is going on.
I really don't want to think about him having ADD as well (his first tests showed no evidence, but supposedly this can change!!??) but, seeing as the research seems to point to this being pretty darn likely, I guess I have to keep an open mind. I guess we'll just handle whatever comes, when it comes.

Thanks so much for your replies they have helped me a lot!