Advice needed for mother of special needs children

MEMA_WIJune 19, 2002

Hello to all. I am mother to 2 very wonderful children who have special needs. My five year old daugther was treated for 2 1/2 yrs for cancer(leukemia that also passed from her blood into her spinal fluid-lots of chemo and radiation), is now off treatment, cancer-free, but has developmental delays due to the treatments. My seven yr old son was recently diagnosed with Asperger's Syndrome(which is on the Autistic spectrum). They both require special ed services at school. I am certified to teach, but am not currently. So I know a lot about educating my children and what kind of services they require. I have had a lot of difficulty with the school system, especially concerning my son.

Asperger's is a newer catagory of Autism and many schools don't know what it is or how to deal with children who have it. I have been supporting the teacher's as much as I can, but I think that if I am going to be at school everyday(sometimes more than once), then maybe I should rethink public education and just teach him myself. I posted on the homeschooling page, but I am interested in opinions from parents who have kids in school systems as well. Any advice?



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That sounds like a very difficult decision for you. Do you think the school will get up to speed as to what he needs? Or do you think you will need to be assisting like this always? Where I live, our school system is considered ok when it comes to special ed services, but if I was to move 6 miles away I would be in a school district considered very good for special ed services. Is something like that a possiblilty for you? How would your daughter react to the idea? Some siblings have lots of sibling rivalry. I am afraid I don't know much (if anything) about Asperger's. Will your son be able to socialize with other kids in things like Scouts, 4H, art lessons or sports? I know those types of activities are important to home schooled children. Are you able to regularly get away from all the child care you do? Super-Mom burnout can easily happen.

I don't know enough to really have advice. It seems to me a loving parent who stays tuned into her child's needs can't go too far wrong. There are good and bad points to either schooling situations. And if you find what you choose isn't working out, you can always go for the other way. Good luck.

    Bookmark   June 20, 2002 at 2:13PM
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MEMA, I really feel for you. For a while we thought my oldest had Asperger's but he never received that "diagnosis" - it turns out he has sensory integration disorder. He's getting OT for it. Here is what I've found. He just finished 1st grade. When he was in kindergarten, his teacher kept telling me he had adhd - but I knew she was wrong. I think teachers tend to call all kids adhd who aren't 100% average!

Anyway, once found out just what he has, I talked to the school district (we live in a very large city school district). They couldn't offer him any help because his grades were at least average and his behavior didn't distrupt class. We've been taking him to a hospital Occupational Therapist once a week for therapy and doing daily therapy at home and it's made THE WORLD of difference. In only 7 months, his reading level has jumped from kindergarden level to 3rd grade level & he's only 7. We took him to private speech therapy, too, but once he started OT we could only afford one, so we insisted the school provide speech therapy, which they agreed to do. He also qualified for one-to-one reading tutoring at school for the first 1/2 of first grade because he started with such a low reading level. It didn't help much until he started OT.

Now, here are my conclusions. DON'T EXPECT MUCH FROM THE SCHOOL. The schools are set up to deal with the 90% of kids without any special needs. If you know what you child needs, be prepared to make sure they get it yourself. That might mean taking them to private therpists, paying for it yourself, or doing it yourself. Don't sit back and expect the school to provide what your child needs. And, what they do provide, remember "you get what you pay for" The difference between private speech therapy and what he gets at school is night and day. When we were paying $40 for 1/2 hr, he got one-on-one, intense therapy that did him a lot of good. At school, he gets 20 minutes of speech therapy with a group of 4 kids and one therapist once a week, and that's considered GREAT - most kids only get it once a week! It hasn't helped at all, but it is keeping him from loosing the gains he got from the year of private therapy, and at this time he's getting a lot more out of the OT, so that's where our limited $$ has to go. Luckily, he is in a "normal" classroom so I haven't had to deal with special education - I'm sure that would be a mess, too.

You hear constantly that you must be your child's advocate. When your child has special needs, it's almost your full time job to be his or her advocate.

Also, make sure the Aspergers diagnosis is the correct one. Sensory Integration Disorder has a lot of the same manifestations - have you read "The Out Of Sync Child" - it's like the "bible" for SID.

Even with the "battles" I feel that school is the best place for my son. I know I could not provide what he needs at home, and I feel it's important that kids have "cultural litteracy" that school provides. It gives us all one common experience.

Good luck to you - you've got a tough row to hoe! It sounds like you are up to the battle, and I'll keep you in my prayers.

    Bookmark   June 20, 2002 at 4:13PM
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Homeschooling doesn't have to be all or nothing, does it? Can you identify the areas where he gets the most benefit from the school and the areas where he would be helped most by homeschooling, and split them up? I think homeschooling is wonderful, especially since you are a teacher, but to give yourself relief and to help him learn to be effective in a group setting, part-time public school would probably be good too.

It sounds like you already know this, and Momma Bird said it too, but I interviewed several school nurses a while ago and they all really emphasized that the special needs kids who get what they need from the public schools are the ones whose parents are serious advocates for them - to the point of following court cases, etc., and demanding what they need. They have to provide services because it is the law, and the more you know about the law, specific to your child's issues, the more you will get from the schools.

    Bookmark   June 21, 2002 at 2:23AM
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Thank you all for responding. This has been very difficult for me. To answer some questions and give you more info:

1. Duckie: They talk a good talk, but I don't see a lot of action. I have substituted a great deal there so I know very well what happens there. Some of the teachers are wonderful. His first grade teacher was one of them as well as both of the therapists. BUT the principal/assistant spec. ed director/school psychologist(it is a small district so they have many titles) really talks up what they can do without really showing any of it. She tells me a lot of what they can do, but it only happens if I push(and push HARD). We have school choice here so I could apply to send him to a different school in the area without having to move. I have thought about this and even know which school I would send him to(they have a good reputation for their spec. ed) but both districts would have to approve the move and they may not because of him being spec. ed. AND if they did, that would mean leaving the one or two friends that he does have in our school and traveling twenty miles to the other district. And it couldn't happen this upcoming school year because you have to apply in Feb. for the next school year.

2. Momma Bear: He has many sensory intergration problems as well which are all a part of the Asperger's. He also has communication problems, anxiety issues, problems with social interactions, and other issues. Asperger's is very complicated and can have many issues. The OT and speech offered at our school are both excellent, which does not happen everywhere. The speech therapist works with him 15-20min. 3 days a wk all one-on-one. OT is twice a wk about 20min. at a time. He has made great strides with speech, but struggles with the motor issues and OT.

3. Anita- NO, I don't think it needs to be all or nothing, but how do I balance it out? I have also thought of splitting time between home and school. Like half and half. But I would want him to be there for the therapies he gets for sure and then some social time. How do I determine what he should be at school for and what I should teach at home? And how do I go about getting the school to go along with this half-time purposal? I have also thought about this as being a real possibility.

We are in a very small community in a rural/farm area. There are some oppurtunities for social activities such as scouts, 4-H, and youth sports. I have been interested in trying scouts or 4-H but wanted to wait til he was a little older. His sister's health was also prohibitive of this for some time until the last 8-10mnths. Sports would probably not be a good idea because of the social issues as well as the motor problems which make most all team sports very difficut.

Thank you for letting me sound some ideas here. It is helpful to hear what others think, or what has worked for them.

    Bookmark   June 24, 2002 at 12:12AM
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Mema - it sounds like you're doing great and have done a lot of research on school options. I live in Ohio, and here it is all or nothing - you can't do 1/2 days at school or a few days a week. I have a friend with a severly autistic child who wanted to do 4 days at school & 1 day a week of intensive therapy at home and the district cited state law that says "all or nothing". I hope your state is more liberal. I thought it was a little harsh, but I did look it up for her & that's what it says.

My son is a Cub Scout and I'd highly recommend it. Our pack has several special needs children, including my son. There are about 115 kids in the pack (grades 1-5) and they are all so accepting of the special needs kids, it is wonderful to see. Scouting really stresses helping others and the boys are so great together - helping the ones who need a little extra help. I'd encourage you to get your son involved in scouts early - the younger ranks (1st grade Tigers, 2nd grade Wolves) are very family-oriented, so you go to meetings with the boy and help him with his achievements. Perfect for a special needs boy (my son LOVES Cub Scouts and wants to go EVERY DAY).

Has the occupational therapist suggested Listening Therapy? My son has been doing it for 5 months and IT IS LIKE A MIRACLE. Vital Sounds has the best website describing what it is - sorry, I'm at work so I don't have the URL but if you do a search you'll find it. Listening Therapy is listening to music specially mixed with certain tones through special headphones for 1/2 hr in the morning and evening, at home. It has made the single biggest difference for our son, more than the speech and occupational therapy. It basically forms new synapses in the brain that helps everything else work. OTs have to have a special certification in Listening Therapy to prescribe it - and I don't know if school OTs would have that, but you could always check and if they don't, check with a hospital OT. It's not covered by insurance but the cost for us was only about $300 (a bargain compared to speech & OT!!!) and it was the best money we ever spent. His reading jumped 3 grade levels in 5 months, his speech improved 200%, and he is now able to express ideas, something I thought he would never be able to do.

I can't stress enough to give the listening a try. I've talked to another mom whose daughter has mild austic spectrum disorder (similar to Aspergers but a little worse) and listening therapy was also like a miracle for her daughter - it helps their brain process information, and every area improves - speech, reading, behavior, modulation, etc. Please follow up and give it a try - if you can't find resources email me and I'll send you what I have. Good luck to you!

    Bookmark   June 26, 2002 at 1:32PM
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Thanks MommaBird. It is useful information. I have thought about scouts before also. And my son has even asked, but I held off last year because he was having so many problems with other kids that I was scared that it would be one more set of adults to deal with and explain why he is the way he is and more battles I was not ready for. Maybe we will give it a try this spring.

I think another mom mentioned the listening therapy. I am also looking into that.

Thanks so much.

    Bookmark   July 2, 2002 at 10:51PM
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It seems you have gotten alot of good advice. I can not offer much help except to say I admire parents who are dedicated and concern for the best interests and needs for their children. It seems you are one of those.
My thoughts and prayers are for you and your family and for those involved.

    Bookmark   July 16, 2002 at 10:02AM
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Whatever state you are in the Federal Department of Education under the Office of Special Education Programs (OSEP) has a list of Parent Training and Information Centers (PTIC) that can assist you with information, support and resources. You can access them through the web or your state department of education

    Bookmark   August 25, 2002 at 10:33PM
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