Help with younger autistic brother

[Joe_5859]

What state was that in? We are in NJ. How did you get them to write the IEP that way?

I’m not in NJ. In our case, it may have been easier since he was only 3 at the time and younger than even pre-school age. Even if we weren’t homeschooling and were planning on sending him to the public school, he still wouldn’t have been going there yet. So they probably didn’t worry about it as much in his case.

That’s why I’d recommend them contacting the HSLDA (Home School Legal Defense Association) to get tips on how to approach this as a homeschooling family as well as Autism Speaks to get tips on how to approach this as the family of an autistic child. Even if the IEP has already been written, parents have a right to call for an IEP meeting at any time to ask for revisions.

One thing I’ve learned through the process is that the school system will not usually volunteer to do more than they have to do. As parents, we need to educate ourselves about what the schools have to offer by law. That’s where outside consultation comes in.

That reminds me. Another place to contact for info is the local County Board of Developmental Disabilities (or whatever similar name it might be called). I think ours will actually send someone to go to the IEP meeting with the parents. We haven’t had to utilize that because we’re working with an outside group who served that role. His IEP at 4 was therefore much more fleshed out that it was when he was 3 and we were doing it by ourselves.

 

[Xantippe]

Joe 5859 said:

“One thing I’ve learned through the process is that the school system will not usually volunteer to do more than they have to do. As parents, we need to educate ourselves about what the schools have to offer by law. That’s where outside consultation comes in.”

Yes.

The mental image to have is of the scene in Fellowship of the Ring when the fellowship is standing outside the gates of Moria, trying to get the doors to open. You have to know exactly the right password.

I have a friend with a very visibly disabled child with a very complicated medical history. The public system didn’t want to do anything for him until they got an evaluation done that said “PDD-NOS.” At that point, the doors suddenly swung open. The kid wasn’t a bit different–it’s just that now they had a piece of paper. (The family didn’t like the SPED options they were given and decided to homeschool instead, but at least they had the choice.)

 

[Joe_5859]

Joe 5859 said:

“One thing I’ve learned through the process is that the school system will not usually volunteer to do more than they have to do. As parents, we need to educate ourselves about what the schools have to offer by law. That’s where outside consultation comes in.”

Yes.

The mental image to have is of the scene in Fellowship of the Ring when the fellowship is standing outside the gates of Moria, trying to get the doors to open. You have to know exactly the right password.

I have a friend with a very visibly disabled child with a very complicated medical history. The public system didn’t want to do anything for him until they got an evaluation done that said “PDD-NOS.” At that point, the doors suddenly swung open. The kid wasn’t a bit different–it’s just that now they had a piece of paper. (The family didn’t like the SPED options they were given and decided to homeschool instead, but at least they had the choice.)

It’s amazing how much significance that piece of paper has. And it usually takes a long time to actually get it. I have also heard that schools cannot (or will not?) even mention a specific disability to the parents, even if they are fairly certain the kid has one. It really slows down the process considerably.

 

[St_Francis]

You’d think, because then they wouldn’t also have to pay for books and everything else he’d need were he to be enrolled. But according to my parents they are giving them a hard time about giving him therapy if he is not enrolled. Why is this? Is it just because that’s the policy? Surely it would be less of a hassle to just give in and let him have therapy? I wonder if the people they are talking to simply don’t have the authority to do so.
My parents are in contact with HSLDA, as they joined the organization a few years ago. I think that they are trying to get their help, but I haven’t talked to them about that much. A friend of theirs who is a lawyer had also offered to talk to the school district for them. Hopefully he can convince them to give him therapy.

The reason they want him enrolled is probably because they could get more federal money if he were a student as were as a disabled student, iyswim.

 

[dunkin]

LoveGod102… I read your post carefully…it could have been written by my daughter. Her autistic brother drives her, and her younger brother, crazy. I started letting her take a couple of classes at school this year to give her a break (everyone else is completely home schooled). We have come to an understanding that what we deal with everyday is just a more intense version of what everyone else deals with in their families. We have had to develop strategies for coping…sometimes it means we need a break from each other, sometimes it means communicating. (sometimes you need to communicate and that just isn’t possible…that can be frustrating. That’s usually when prayer is most helpful.
Things that have helped us…I try to make it a point to spend 1:1 time with each kid several times a month…a mother-daughter day for venting and fun, a trip to Mc Donald’s, etc. I encourage the kids to thank God for each other and to find kind things to do for each other. I also try to find an activity that we can all do together that even my autistic son likes. We also like looking at photos from good times (either together or individually) to remind us that we do have good times together. Maybe you can put some up around your room.
You sound like you are a great big sister. Remember to keep communications open with your parents, help out where you can, and remember that you are a kid…you don’t have to solve the problem, just be cooperative with the process.
Also…some autism support groups have groups for siblings that can be helpful.
For your family…a therapist/ coach may help your family develop strategies for various
scenarios. The homeschool defense league has $ for families with disabilities. Maybe this can help with getting help sooner.
My prayers are with you and your family.