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Permalink Reply by Michele Williams on August 27, 2008 at 4:57pm

Janet,

I'm attaching something I wrote to help parents be effective in their educational advocacy for their children with disabilities. Your school must keep records about every child's education and those records are kept in a cumulative file. That file is available to you. the attachment is information about how to get a copy of this file and understand what is in it, and in some cases, what to do about what you find. Please take this attachment and study it. Get your child's cumulative file and know what your school is doing with/to/for your child and how it is (or isn't) providing free, appropriate public education (FAPE) for him.

Contact your state's Parent Training and Information Center (federally funded with IDEA money) and find out what training they can offer you online and in workshops for parents. They will help you learn about and understand IDEA. PARENTS are the main enforcer of IDEA--not the schools and not any department of education in any state. That fact means you need to be familiar with what IDEA provides for you and your child so you can claim it. There is an abundance of information about education advocacy that ALL parents of children with disabilities can use at:

www.nichcy.org
Council of Parent Attorneys and Advocates (COPAA) www.copaa.net

COPAA is an organization of attorneys, advocates and parents. Its primary mission is to assure FAPE for children with disabilities. Working on a national and an individual basis, COPAA members advocate for the educational needs of students of all ages with all disabilities through amicus briefs, legislation consultation, legal representation, parent-to-parent advocacy assistance, etc. Member parent advocates and attorneys have access to listservs to discuss and share information, strategies, case histories, support.

Website contains links to federal and state laws, due process decisions and special education websites in all 50 states available to the public. Public Policy link yields lots of resources helpful to parents in their advocacy.

ADA’s Guide to Disability Rights Laws http://www.ada.gov/cguide.htm

Provides an overview of disability rights laws from the ADA to age, travel, housing, voting, rehabilitation, education, and more. Each section contains links to full laws, related websites, phone numbers, etc.

Wrightslaw.com www.wrightslaw.com Extensive website of Peter and Pam Wright, attorney and licensed clinical social worker, respectively. Website includes special education laws, related services laws, case histories of Supreme Court Cases and commentary, strategies for advocacy, explanation for understanding evaluations, IEP assistance, and more.

The Advocacy Institute http://www.advocacyinstitute.org/ Dedicated to providing information for parents about No Child Left Behind and how to use it to get appropriate education for students with disabilities. Several publications online with very good explanations of how IDEA and NCLB work together, explanations and parent tips for getting FAPE and monitoring progress toward educational goals.


US Department of Education's Office of Civil Rights
http://www.ed.gov/about/offices/list/ocr/index.html?src=mr
US DOE has its own department link to Office of Civil Rights (OCR) for safeguarding the rights of students with disabilities and other groups subject to discrimination.

Also, you should visit websites about learning disabilities as well as AS. Students with AS frequently have the same difficulties with learning and can use the same strategies and help. Parents can use the advocacy information on those websites, too. Go to:

LDOnline www.ldonline.org
Information about learning disabilities, strategies, help for teachers, students, and parents, and advocacy help.

LD Info http://www.ldinfo.com/
Written for the student with learning disabilities to understand and jam-packed with strategies. Explains the learning disabilities, strategies, learning styles, ways to strengthen weak areas, self-advocacy, and more.

National Center for Learning Disabilities http://www.ld.org
Easy resource of authoritative information on learning disabilities.

SchwabLearning www.schwablearning.org
Website by the Charles Schwab Foundation to help families dealing with children’s learning disabilities. Extensive resources.

I'm gathering tons of information on parenting and education advocacy for families of children with disabilities for a book and will happily share. So far I have 20-years' worth of experience and 2 Gigs of stuff....lots of sorting ahead! Take the information, use it, let me know if it works for you.

Hug your kids. Each one is a unique creation and has a reason for being here. Hug yourself--the same is true for you. Our role as parents is to open that world of potential for our children. You're making all the right moves.

Michele

Attachments:

• How to Get and Analyze the Cumulative File.doc, 46 KB

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Permalink Reply by Tina Miller (mother) on March 31, 2009 at 10:31pm

When I found out about my son, his Dr. did not have much to tell me besides to go join a support group. At first I didn't want to, but ever since I put aside the pride, it is one of the best things that I could have ever done for the both of us. To be around others with similar situations has really helped. They have events that the kids do togther and no one judges them. At our support group we have a social worker who will go to the IEP meetings with you. For me this was great because I didn't even know what an IEP was. But seeking out a group in your area might be an idea to think about.

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Permalink Reply by Hollie Miller on March 31, 2009 at 10:52pm

I have read as much as I can because many "experts" don't really know what our kids' need. I think my son gets way more therapy and help from me than anyone else. If I think of anything else, I will let you know. I haven't had much luck with help either...LOL

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Permalink Reply by aspie on April 5, 2009 at 6:32am

Don't allways listen to what the others say!
Sometimes you just need to go your own.

I am a girl with Asperger's and I can help you with some advice.

With us the biggest problem is that we don't know exactly how to behave, and because of that we go into our world and seem like big individualists for who it doesn't matter how do you feel. But it's really not true.

I sometimes seem like that and because of that I have no friends at all.

For me the safest world is my own world, but I can get into yours if you show me how.

ou'll need a lot of patience with your son.

He just doesn't "get it". You'll have to show him things for which you think he have to know naturally.

Show him how to behave in "your" world, speak with him, anyway if he seems like this is not in his interest that moment and if he seems like "I don't even listen to you".

He hears, but I think he doesn't know how to react. If you find it he really isn't listening to you don't give up. Just tell him it's important for him to know, he might need your advice some time.

If you have some problem, don't allways do what the other people says, sometimes you need to work in the way you think it could work for him. You might read some literature about Asperger's.

Don't think for us it's normal to have Asperger's, we can sometimes find it very demanding and we think that all around us (NTs) are different and don't show us how to behave. That can be sometimes frustrating. If you find your son that looks confusing, try to find what is the thing he is confused of and try to tell him what to do. It'll help.

We sometimes find hard to talk to other peolpe, but don't give up, hope dies the last.

Try to contact some people with similar experiences as you have, maybe try to befriend some Aspie, read some literature (order or buy some book, find something on the internet (on google and yahoo you will find many of it), you can contact me on aspiegirl91@live.com email, ... Anyway find some way to know more about the disorder and it'll be easier for you to help it. Or do you know a lot but still don't know how to help?

Anyway,

never give up, everything is gonna be fine!

Regard,

Aspie

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Permalink Reply by Gavin Bollard on May 27, 2009 at 6:43am

Janet,

What makes you think that you need to be doing more? Do you feel like something is missing? It's not all about services, it's about trying to address the needs of the aspergers condition without attempting to change the child into an NT (neurotypical) person.

You need to look really carefully at the IEP and make sure that it really is "individualised" for your child - or at least for the aspergers condition. We find at my son's school that the IEPs often aren't as individual as they should be. You might find the things I wrote about IEPs (see links here: to be of interest).

The other thing is that I second "aspie"'s feelings above.
1. Don't give up, it will all be fine.
2. Work on the biggest weaknesses - social skills.

We've gotten a tutor for our eldest son because he needs additional help with his work. I take the attitude that School is mostly about socialisation and that a couple of hours of one-to-one tutoring each week is better than the entire week of school academically. This will probably change as he gets older but right now, it's true. We've also got speech therapy and occupational therapy going, though not all at the same time (we alternate every six months).

Finally, we've found a great place for our aspie children. Scouts. It's rigid and disciplined enough to give them rules to follow and it's understanding enough that they are able to be social without too much effort. My wife and I have both become scout leaders (of different platoons). This enables us to help both of our sons and observe them in social settings to assist and correct (without being overbearing).

Good luck.

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Permalink Reply by John "Hai" Knapp on January 31, 2010 at 10:06pm

I might see if I can offer anything. I have AS. He may be a step above because he likely knows he has AS. I grew up knowing I was different, but not knowing what the heck it was.

I suppose I have been told at 7 I had AS; but long since forgot. Then, at 53, in Sept 2007, unemployed, figured I need help competing for a job, needed help with Nebraska Voc Rehab, which of course requires a disability label. My mom told me I was diagnosed with Aspergers Syndrome. I have started to research it and contacted Voc Rehab. They sent me to a psychologist who has re-diagnosed me with AS.

A number 1 most important item is he must know that he is loved unconditionally for who he is. He must know that you accept him as he is. Things he has an interest in he may need encouragement in pursuing them. Is he interested in Electronics? Does he have an interest in music or a musical instrument?

Currently I am a folk musician/singer/songwriter. I play guitar and piano. I wrote few songs with autism awareness theme. I am also an activist for affordable healthcare here in USA.

When the economy was in halfway decent shape I have worked 9 years at a Battery Charger manufacturer as a test technician. Much of my life I have managed my AS well, not even knowing what my condition was.

I have wrote an essay on some of my experiences with AS, "Needing Health Insurance and Having a Mild Disability." I have attached it.

Hope what I'm offering is helpful.

Bear Hugs, John, also Hai (sounds like high)

Attachments:

• need insurance and Mild disabilities.doc, 37 KB

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