Ways to prepare my child with SPD for Kindergarten

[Melbel]

Actually, I've already been looking at these links when you posted them in that other thread. I was thinking some of these characteristics fit Greenbean too. I"m still reading, but so far I don't think there is a clear fit. Course, with these issues, nothing is clear so I'm not ruling it out. But Greenbean's sensory issues started showing themselves when he was 8 weeks old. He would cry for hours and the only way he'd be consoled was by being snuggled down in the Moby wrap OR swaddled tightly, canopy down, in the Graco Sweetpeace swing.

I was not sure if you saw the other thread. Considering our completely unexpected path, and the countless stories about children I have read about through my own research, I am much more compelled to dig for underlying causes, rather than simply accept labels and treat symptoms. I am also much more willing to research on my own rather than trust the doctors to know or care enough to figure out the tough cases. I just feel horrible for all the kids that I read about who suffered for years before discovering they had a chronic underlying infection (Lyme, strep, Bartonella, mycoplasma, candida etc.) causing a myriad of problems (autism, ADHD, SPD, anxiety, autoimmune dysfunction, etc.). Although the testing is not precise, and there is so much overlap in symptoms, IME, it is at least worth consideration (particularly if there is a blood draw for other things). There was a list of suggested tests in one of the PANDAS links. I would definitely consider an immunology workup and a Lyme Western Blot as well (all of the symptoms are also consistent with Lyme too; OCD is a little less clear, but anxiety is definitely present with Lyme). I along with DS and DD2 had patterns in our blood work showing immune dysfunction long before we discovered Lyme was at play (low WBC and other values which is counter-intuitive for a bacterial infection; it actually showed that the body was losing more WBC than it could generate and an overwhelmed immune system). It may sound like I think EVERYONE has Lyme or another infection. To the contrary, I think that it needs to at least be considered and ruled out in many cases (to the extent that you can with current tests). :group hug:

FWIW, DS has major organizational challenges (beyond the norm for his age), problems with handwriting, and SPD.

[brittone2]

Can his OT provide sensory diet suggestions that could be incorporated into the classroom? I would use the existing OT's input and suggestions. Sometimes they'll even consult with the teacher about incorporating those ideas into the classroom. He'll be in private, right? So no OT at school?

That's why I would use the existing OT to chat with the teacher about meeting his sensory needs. Does the OT have any experience in schools? If so, she should be able to make some suggestions to the teacher and should be familiar with common classroom accommodations for kids with SPD.

Move N Sit cushion, sensory diet/breaks, fidget toy,

[gatorsmom]

Can his OT provide sensory diet suggestions that could be incorporated into the classroom? I would use the existing OT's input and suggestions. Sometimes they'll even consult with the teacher about incorporating those ideas into the classroom. He'll be in private, right? So no OT at school?

That's why I would use the existing OT to chat with the teacher about meeting his sensory needs. Does the OT have any experience in schools? If so, she should be able to make some suggestions to the teacher and should be familiar with common classroom accommodations for kids with SPD.

Move N Sit cushion, sensory diet/breaks, fidget toy,

Yep he'll be in a very small private school. They have been very accomodating so far with any issues I discuss with them for any of the kids. But they have no funding of any kind other than the money they raise so the school staff is really a skeleton crew. Which means no specialists of any kind. Over the next few weeks I'm going to focus heavily on getting his team assembled to get him ready in every way I can. His regular OT is on maternity leave until February and we are loving her replacement, Joe. He has been VERY helpful so far. But I'm going to start putting more pressure on all the people working with him to work together to find solutions. So far, I feel they make just random suggestions here and there fir thing for me to try. But I don't see any concerted effort to get him ready. Sigh. We had it so good in Minnesota. The EI program was fantastic there. They would have orchestrated all of this for us and come up with a plan how to handle this. Wisconsin is so backward.

[Melbel]

PANDAS/PANS and Lyme presentation streaming LIVE now. Free.

http://new.livestream.com/accounts/2...events/1688460

[Melbel]

I just came across this detailed PANS symptom scale that I thought you may find helpful. It described PANS and what constitutes OCD symptoms differently and in a way that I better understood.

https://word.office.live.com/wv/Word...PANS+Scale.doc

[pastrygirl]

I found out yesterday that the aide is taking Toby for walks throughout the day, carrying his backpack which has a 2lb weight in it. Or it used to. He took it out and I keep forgetting to put it back in. I hadn't realized they were using it for heavy work throughout the day, but they said it works really well for getting him focused.

[gatorsmom]

I just came across this detailed PANS symptom scale that I thought you may find helpful. It described PANS and what constitutes OCD symptoms differently and in a way that I better understood.

https://word.office.live.com/wv/Word...PANS+Scale.doc

Thank you for all the info. I thought hard about what you said upthread about investigating the causes for his SPD and not just how to relieve the symptoms. I thought about it for a week or more. Greenbean displayed his SPD symptoms at 6weeks. So I guess I always assumed he was born with this. But I admitted to myself that you are right- if there was an underlying condition it needs to be looked into. So, last week, I met with our OT, our Child psychologist and our very experienced and highly regarded Pediatrician. I asked all of them about this. Of course, the ped was who I most wanted to discuss this with. He thought all my concerns on this were totallly valid and was willing to do the testing. HOwever, he said in his opinion and experience of seeing many, many kids with SPD or SID or the many labels it has been given, we won't find anything by doing invasive testing. He said that each time we meet he has been listening for other symptoms, trying to rule out other diseases that could have caused this. He just doesn't think there is any symptoms or signs that something else is at play here. He said we should always be ready to revisit the idea of doing thorough testing if things change or new symptoms or clues present themself. But at this stage, he thinks we would really get no new information. I feel comfortable with this.

anyway, I thought I'd give that update and thank you for presenting the idea. Ive become so used to Greenbean behaving this way that your comment really made me stop and think. I'm glad it did.

[gatorsmom]

I found out yesterday that the aide is taking Toby for walks throughout the day, carrying his backpack which has a 2lb weight in it. Or it used to. He took it out and I keep forgetting to put it back in. I hadn't realized they were using it for heavy work throughout the day, but they said it works really well for getting him focused.

This is really good info. It would be a simple, easy thing to integrate into his classroom schedule.

[Melbel]

Thank you for all the info. I thought hard about what you said upthread about investigating the causes for his SPD and not just how to relieve the symptoms. I thought about it for a week or more. Greenbean displayed his SPD symptoms at 6weeks. So I guess I always assumed he was born with this. But I admitted to myself that you are right- if there was an underlying condition it needs to be looked into. So, last week, I met with our OT, our Child psychologist and our very experienced and highly regarded Pediatrician. I asked all of them about this. Of course, the ped was who I most wanted to discuss this with. He thought all my concerns on this were totallly valid and was willing to do the testing. HOwever, he said in his opinion and experience of seeing many, many kids with SPD or SID or the many labels it has been given, we won't find anything by doing invasive testing. He said that each time we meet he has been listening for other symptoms, trying to rule out other diseases that could have caused this. He just doesn't think there is any symptoms or signs that something else is at play here. He said we should always be ready to revisit the idea of doing thorough testing if things change or new symptoms or clues present themself. But at this stage, he thinks we would really get no new information. I feel comfortable with this.

anyway, I thought I'd give that update and thank you for presenting the idea. Ive become so used to Greenbean behaving this way that your comment really made me stop and think. I'm glad it did.

I am happy to be of help through our experience. Our pediatrician shot us down too, unfortunately. IME, even those doctors with some knowledge re. Lyme/PANDAS, they have not kept up with the evolving research and the nuances of the disease(s). I have seen in my own children (DS before his crash and both my DDs) that the symptoms can be SO incredibly subtle (where Lyme was not remotely on our radars; the kids had various ailments, but appeared to be thriving). It does sound like your pediatrician has an open mind, thankfully. If Greenbean is having a blood draw for other reasons, I think it is a no brainer. There may not be an underlying infection, but what if? I just wish I had pushed harder with our own pediatrician (who was SHOCKED that my girls were positive for Lyme, even though she had Lyme training during her residency in the NE).

[hillview]

DS2 (5) is in prek at a montessori school. he also has some sensory and possible AHDH challenges. The teachers provide him with time to do exercises, they've provided him with a chair during circle time (he sits better in a chair vs on the floor), a specialist there has also offered some modifications for him. DS1 had some handwriting challenges 2 years ago and the school provided him with a slant board and pencil grips.

Also if you go to a good OT, for eval you can get a write up of suggested modifications. We did this with both kids.

HTH