Homeschooling a child with Sensory Processing Disorder, or Autism? Pub. scl issues 2

[DawnL]

My oldest son is 5.5, and did not do well in preschool. The preschool wanted every child to be exactly the same way, and that is not my child. He has sensory processing disorder. I have been planning on homeschooling him, at least for now, as dh and I both feel that this is the best route for him at this time. For a host of reasons, including that it's impossible for him to sit still, be quiet, and keep his hands to himself.

 

All this year, a preschool year for him, he has been going to speech at the school where he would attend kindergarten. He goes 2 times per week, 30 minutes each time. Dh and I decided we would enroll him in kindergarten, just to keep our options open. We want to have every door open for our kids, you know? So we had to redo his IEP for the upcoming year.

 

For the first IEP meeting, there were 4 people listed as coming, and only 2 showed up. They had planned to discuss only speech, even though I had written a 2 page note about his extensive allergies, and a 2 page note about his preschool experience, and why we pulled him out of preschool.

 

It's a long story, but they weren't very attentive, and the school psychologist just attempted to shove this into the "done" file for the year. I had to write a note to the principal, and to the school district superintendent, via certified mail, asking for an IEP meeting.

 

So the next meeting, there were 8 people from the school. And instead of the principal sitting in, it was someone from district. Well, when all was said and done, they never asked me to list all the accomodations that I wanted. And they should have, because it actually wasn't a lot. They would not accept the report from my son's OT at the hospital, stating that he has SPD. In fact, the school said they don't recognize SPD at all. They want to do their own testing. And then they brought up that they wanted to include Autism in their testing.

 

Now testing sounds like a good thing. But last year, when we were going their for just speech, they pushed for this testing, too, and stated that my son is "3 points away" from being ADHD, and we should take him to the Dr. It's not true, though, he just has SPD. Now it seems that since they don't get to go the "ADHD route" that they will simply hunt around for the "closest thing" they can label him with. And that if they can't, they will not help him.

 

Now, a lot of this doesn't worry me a lot, because I do plan to homeschool in the fall. However, I don't feel my son has Autism, and I worry about the school trying to "diagnose" him with something like this. I have had online friends trying to convince me that he likely is Autistic, and discouraging me from homeschoolling.

 

So I guess my long story ends with, is anyone here homeschooling someone who is Autistic? And how did they get their diagnosis? And should I worry if the school does label him as Autistic?

 

My son is a "seeker" with his SPD, so his is pretty active. I plan on teaching using a lot of games and such, so he is moving a lot. He really needs that.

 

Thanks for any advice.

[lisasaysto]

I wanted to post to encourage you to follow your instinct in teaching your child. You know him and what will help him learn better than anyone, especially friends who know you only online. There is absolutely no reason a child with autism has to go to school unless that is what you want.

 

My son has SPD and recently was diagnosed with dyslexia. During the dyslexia testing, it was suggested that we also have him tested for ADD/Asperger's. We haven't decided yet whether we will proceed with testing for these because we don't intend to put him into a traditional school situation, and it doesn't seem like a formal diagnosis is necessary at this time. I can make all the accommodations he needs at home. For example, he can jump on the mini-tram while he's working on math facts. I don't need a diagnosis of ADD to know that he needs to fidget while he thinks and he needs short lessons with active breaks. For now, we are just doing what we see that needs to be done and consulting with private therapists when we don't, and it's working out fine. I have a lot more confidence in the therapists of my choosing than those of the school district anyway!

 

If we decide to pursue a diagnosis of ADD/Asperger's, it will be through a private clinic and it will be because we feel it's necessary to help our son.

[TravelingChris]

I am confused about your post about ADD/Aspergers. Do you mean they think he has both because they are not the same at all. ADD or rather ADHD which can be inattetative or hyperactive or both doesn't even qualify anyone on its own for an IED. MOst people with ADHD are not distinguishable by lay people when they are treated. I don't think the same is true at all of Aspergers.

 

FOr the original OP, I wouldn't trust the school to correctly diagnose anything. THey would be doing it by what's easiest or most monetarily beneficial for them.

[Pamela H in Texas]

Even if your son is somewhere on the autism spectrum, you most certainly CAN homeschool him.

 

We put our ds in school at one time due to family issues. We also figured that the information we could get from them would be helpful. Actually, school turned out to be disasterous...seriously disasterous. And the school REALLY wasn't in a position to work with a child like my son was at the time. At least at home, he got SOME education. My son was in school for 8 weeks (well, minus a week hospitalization in the middle of his stint there).

 

At home, you'll pick materials and activities which fit his needs. You'll go his pace. You'll adjust the length of time, the times of day, whatever you need to. Schools just don't have so much liberty.

 

And you may well find out that over time, he seems less symptomatic. What seems like full blown sensory issues or adhd or something on the autism spectrum may look like just a mild quirk by the time he's 12. That isn't a guarantee but I've seen lots of these kids, my son being one of them. As a toddler/preschooler, my son seemed pretty solid with these dxes and a couple others. By 10, we could see a huge difference. By 12, the average person would never guess there is "something wrong with him" though we deal with some academic issues, spontaneous regressions, etc. They did figure he was from another country due to his "accent." He's 14 now and about on grade level across the board. He still has fairly lazy speech and we can't get the ending R sounds so he sounds like he's from Australia or something. But he's pretty "normal."

 

Anyway, I say enjoy him at home. If you want to pursue dxes, then do so privately. A good thorough evaluation will be helpful for your understanding.

[Melissa in NC]

I have a daughter (age 11) with sensory issues, food allergies and anxiety. When I consulted a Pediatric Behavioral Specialist, he told me that homeschooling was the best thing for her since school would be miserable.

 

We consulted the Specialist because we suspected Asperger's. It is so hard to diagnose a kid. I even suspected ADD at one point. Regardless of the official diagnosis, you can homeschool. The diagnosis can be helpful in choosing curriculum, such as with dyslexia, but I do not make an issue of the fact. I know people who homeschool special need kids of all types so it is possible. Look for yahoo groups that support your needs.

 

In regard to the sensory issue, as we age, we gain a greater control over our lives. Adults with sensory issues can "mask" their issue because they can choose their environment. Do tags in your shirt bother you? Buy the ones that do not have tags or cut them out. Loud noises annoy you? Do not go to concerts or movie theaters. Fluorescent lights give you a head ache? Choose a store with better lighting.

 

 

For my daughter, I try to accommodate her by buying the clothes she likes. I also do not force her to eat rice or mashed potatoes. (sensory). Instead of these food, she can eat some bread. (I hate the mouth feel of raspberries and no one forces me to eat them anyway.) We rent movies rather than go to a theater. She can wiggle all she likes in school and long as she gets her work done.

 

Remember that homeschooling is not a all or nothing proposal. You can homeschool for a season than transfer to a classroom environment at a more mature age if that is what is best for your son. Good luck.

[CookieMonster]

All this year, a preschool year for him, he has been going to speech at the school where he would attend kindergarten. He goes 2 times per week, 30 minutes each time.

 

May I suggest you explore in-home speech therapy. With a good therapist (which would be most therapists) much more progress is made. I mean, maybe your son only has moderate speech issues, but even so, I found the PS speech "intervention" to be ineffective (hence the quotation marks). My son made all his progress in the in-home sessions we were doing. (I wrote a blog post about our ST experience: Read it here.)

 

I did go ahead and send my son to preschool - even though he couldn't sit still, be quiet, or keep his hands to himself. I did it for two reasons. The primary reason was speech development. The one thing I could not provide was verbal interaction in a social setting. (I tried, but no playdate or mom's group was working out - and even then it wouldn't have been regular enough.) The first three months of the school year he improved in his social speech by leaps and bounds. The next two months he reached age-appropriate social interaction. The last three months of the school year he was not benefitting positively anymore.

 

The second reason I put him in preschool was because of the SPD the OT was sure my son had. I wanted to push my son, because I thought he was ready for the lunge, into learning to handle himself better. It took a while, but he definitely improved as the year went on. I was prepared for his not fitting in the behavior expectations, and for working on them at home. I was also lucky, though, to send my son to school who works with children where they are. They gave my son a special seat to sit in during circle time. They were cognizant of his speech difficulties. And they were just plain nice.

 

Anyway, I say all of that about what I did with my son and his speech problems because, once his speech issues were gone, his SPD was much, much easier to deal with. He could tell me what he was feeling, why he was screaming, and I could talk him through it.

 

 

For the first IEP meeting, there were 4 people listed as coming, and only 2 showed up. They had planned to discuss only speech, even though I had written a 2 page note about his extensive allergies, and a 2 page note about his preschool experience, and why we pulled him out of preschool.

 

It's a long story, but they weren't very attentive, and the school psychologist just attempted to shove this into the "done" file for the year. I had to write a note to the principal, and to the school district superintendent, via certified mail, asking for an IEP meeting.

 

Are you aware of how the whole process works in your district.? It sounds as if the school personnel may have dropped the ball. But, it also sounds like maybe you're not entirely sure of each step in the process. The whole IEP thing is absolutely a red-tape, cross-your-i's-dot-your-t's process. Get ahold of someone and start asking questions: what happens next? What happens after that? What happens if I get turned down? What happens if I get an IEP? etc. etc. ad naseum. Really.

 

_____________________________________________________

 

As a last note about the SPD thing: I decided to drop OT. I had a couple of sessions with an OT for my son's supposedly serious SPD and decided to do it on my own. All the OT was doing was giving my son something to do which caused him to flip out. She would then teach him how to deal with it. I thought to myself, "Golly gee, Batman, I can do that!"

 

Before, I had been carefully orchestrating his day to avoid negative stimuli. I would "just get through" meltdowns. After watching three OT sessions, I started to actively try to engage my son in problem situations and teach him how to cope. After all, that's what she was doing. We went to mom's groups. We went to the play area at the mall. We went shopping. We went to the park. We went to restaurants. We went to the Children's Museum and the Zoo. We played with playdoh and slime. I actively introduced him to foods, smells, and sounds he didn't like.

 

And I had to deal with a lot of meltdowns. A. Lot. We had to leave early many, many times. It was exhausting. But it worked. Now, at five years old, he's "a little touchy but liveable". Or you could say he's, "a bit melodramtic". But SPD? Nope.

[chiguirre]

Sure, you can hs a kid with autism. In fact, your life will probably be much easier if you do. School is a hard environment for a kid with sensory issues and it's all day every day. I've found that ds can hold it together in a challenging environment for a couple of hours, but it's too much to ask him to do that for 7.5 hrs a day 5 days a week. At home he doesn't become overstimulated and has fewer meltdowns.

 

I agree with Pamela H about ps being disastrous. Ds2 attended 2 years of ps preschool and all it accomplished was to show us clearly what a difference school can make. In the ps program, they thought he couldn't eat properly due to severe OT issues and wasn't potty trained. At his autism therapy center in the afternoon and at home we didn't see any of these issues and he was starting to read Bob books and do pk worksheets. Big difference! And all due to the educational environment and competence of the staff in dealing with autism. It's not rocket science, but you do need to know what you're doing or you can do harm.

 

If you don't want to use the ps for testing now, I'd just formally pull your ds out of school. If you think you might need achievement and IQ testing as part of a private evaluation, you might want to pursue the school testing route to save some serious money. OTOH, if your SPD therapists and pediatrician don't see signs of autism, I wouldn't worry about testing right now.

 

The Special Needs board is very helpful for advice about dealing with the ps and curriculum and activity ideas.

[specialmama]

I just wanted to jump in here to say a few things. I agree that for a dx you should seek independant professionals, don't use theirs. Secondly, I wanted to give you a bit of reason as to why the school wants a label. Labels come with codes, or numbers, and the more severe the dx, the more funding the school receives. In Alberta, for example, my son with autism has a code of 8, which essentially means he has the most funding available. This allows the school to purchase OT, speech, psychologists, and have an aide shared between my son and another child. The school likely wants the funding in order to meet his needs. Without it, they cannot get the services without some fancy footwork. By that, I mean, sometimes there will be a district or principal who has an aide on site who can be shared, and perhaps they could do that, but it is no guarantee that it would last forever without the dx. Thirdly, I've taken many courses and seminars on IPPs and IEPs and IPRCs (they're all the same: meeting or document, it depends on where you live.) These meetings (which lead to the written program) are *typically* very textbook, very legal, and the panel often has the personality of a frozen pizza. There's a Chairperson, a secretary (sometimes it's the same person) and at least someone represtenting the school. There can be 2-20 people attending. You are allowed to bring an advocate with you, someone trained in your district to fight for your child. Everything you say at one of these meetings must be said as a need. For example: John needs help toileting. John needs help to stay on task. (Safety is the biggest thing to note here, regarding bolting especially.) This is your main job during these meetings, to state his needs. There are sites online that give you lists of sample needs to help you with this. In Canada, not sure of anywhere else, if you state the need, then they are legally required to meet the need or to find someone who can meet the need (private tutor at home.) They must meet that need with a measurable goal. Ie: John will independantly request using the bathroom 3 out of 5 times by December. John will independantly transition from 1 activity with the help of a visual schedule by October. I'm not sure how the meeting went as I wasn't there, but our meetings in Ontario were cut throat, I felt like I was always fighting and it became very tiring. But the keys were 1) dx 2) wording of needs. They accepted no less.

If you wanted to fight for services, if money is tight and you'd like to see if you could get a specialist to come to your home should you choose to homeschool him, then the dx will help in that. Don't worry about a dx "following" him and ruining his life. It will enable you to access the services for him, and someday, hopefully, you could just stop disclosing the dx. It's that simple. You do not have to tell future colleges or universities. :001_smile: Think of it as a ticket to services to help him be all that he can be.

 

With all of that said, I'm sending hugs to you. I know all too well how frustrating it is! :grouphug:

[JFSinIL]

If you want to deal with the school, you need to request in writing that they do a complete evaluation of your son. If you do not like what they come up with, in writing request a complete OUTSIDE evaluation done at public expense.

 

For more info: http://www.wrightslaw.com/info/test.index.htm

[specialmama]

 

For more info: http://www.wrightslaw.com/info/test.index.htm

 

Bang on! Wrightslaw is awesome! It is US based, so some of it will not apply if you're in Canada. If you are a fellow Canuck, see http://www.afase.com/index.html there are many links there for advocacy, namely Lindsay Moir, Canada's expert http://www3.sympatico.ca/l.moir/index.html

[lisasaysto]

I am confused about your post about ADD/Aspergers. Do you mean they think he has both because they are not the same at all.

 

Sorry if my punctuation was confusing. Yes, I know that they are completely different things. I should have used an "and" instead of the slash.

[jujsky]

Now testing sounds like a good thing. But last year, when we were going their for just speech, they pushed for this testing, too, and stated that my son is "3 points away" from being ADHD, and we should take him to the Dr. It's not true, though, he just has SPD. Now it seems that since they don't get to go the "ADHD route" that they will simply hunt around for the "closest thing" they can label him with. And that if they can't, they will not help him.

 

My son is a "seeker" with his SPD, so his is pretty active. I plan on teaching using a lot of games and such, so he is moving a lot. He really needs that.

 

I live in your world every day of my life, so you are so not alone! My son is almost 6, has SPD (he actually has mild fetal alcohol syndrome and his neurologist believes that it's manifested itself as sensory processing disorder) and he is a seeker as well, like your son. The description you gave of your son's behaviors sounds exactly like my son, and my son also needed speech therapy as well. I have never sent DS to school, but I had him in private therapy.

 

As far as the school testing him for ADHD, your son is too young to be diagnosed with it. ADHD cannot be diagnosed until a child is at least 8 and the neural pathways have been cemented. I had read this, and my son's neurologist confirmed it when I asked her. ADHD can be suspected at a younger age (which is one of the things the neurologist originally suspected with DS) but cannot be diagnosed. The school wants to move towards diagnosing him with ADHD so he can be medicated and make their lives easier. I used to be a teacher in public school and I've seen it happen time and time again. In my personal opinion (no disrespect whatsoever meant to anyone who legitimatly has a child with ADHD) I think ADHD is often mis-diagnosed or over-diagnosed. It's become sort of a catch-all condition. I think a lot of kids who supposedly have ADHD are kids who have undiagnosed sensory issues. I'm sure you're well-educated about SPD, so you know with early intervention the neural pathways can re-route before the age of 7. I think if many of these kids had received early intervention as toddlers and pre-schoolers, they wouldn't be on medication for the rest of their lives. If you look at the list of ADHD symptoms and the list of seeker-type SPD kids, there is a ton of overlap.

 

My son's psychologist initially thought he might be on the autism spectrum (and then was completely dumbfounded that I was upset by that assessment because he didn't seem to think it was a big deal) but after meeting with him a couple of times he said he did not have it. I don't know what type of testing is involved to diagnose that. I'm inclined to say that if you are sure you're not going to send him to school, don't bother having him tested. If you think you might send him, go ahead with the testing. The district doesn't have to recognize SPD because it's not yet in the diagnostic journal (our therapist said it will be in the next edition which is coming out in a couple of years) but he will end up receiving a lot of the same therapy for autism that he would for SPD if he's diagnosed with that.

 

I'm sorry you're dealing with all of this. Has your current therapist discussed the Engine Program with you? It's designed for older kids, but the first part of it can be used for younger kids. It teaches the child how to recognize how his/her interal engine is running and then choose appropriate tools or exercises to get their engine where it needs to be for a specific activity. My son wasn't into trains, but loves animals, so we always ask him if his body feels like a rabbit, elephant, or turtle. I made him an actual sensory toolbox out of a regular toolbox that has activity cards, mouth tools, fidgets, and things in there for him to use when he needs to be an elephant and he's acting like a caffeinated rabbit in over-drive :001_smile: The program has really, really helped us. He is starting to utilize his toolbox more and more without me reminding him.

 

Good luck with everything!