Homesteading Forum banner
1 - 20 of 25 Posts

·
Registered
Joined
·
1,224 Posts
Discussion Starter · #1 ·
Well, we have finally gotten the diagnosis for my oldest son, Noah, of Aspergers Disorder. I have written before asking questions and I guess now I have another one. Where do we go from here?

The psychologist gave the diagnosis..I have been reading like crazy to learn all I can. I have contacted the local Autism Society about support meetings. I know I will have to do something at his school (I guess). His teacher knows and is supportive to a point.

I guess what I am asking for is direction. If you have had a child with this diagnosis..tell me where did you go after the diagnosis to help your child. What obstacles did you meet..what was most helpful.

I found out about a camp in our area for Asperger children and the director wrote and said we should apply for an access card because the program is funded through them. Does your insurance help or did you need the access card.

I am confused and a bit stressed about it all but am coming the the realization I need to do something ...I'm just not sure what.

Thanks everyone for listening..it is a confusing time for me. I dearly love my son and want to do all I can to help him.
 

·
CF, Classroom & Books Mod
Joined
·
9,934 Posts
Teresa -- Many people have found that a strict diet can help with the "issues" that Aspies deal with and lessen some of the symptoms. A really good book is "Is Your Child's Brain Starving?" by Dr Michael Lyon. I have a friend with a profoundly affected Asperger's child, and this helped enormously.

Also, keep in mind that being diagnosed with Asperger's isn't necessarily a bad thing. Some VERY successful, learned people have Asperger's -- or it is speculated that they did by later looking at their lives: Albert Einstein, Isaac Newton, Benjamin Franklin, Leonardo da Vinci, Bill Gates, Henry Ford, and Isaac Asimov. These are just a few.
 

·
Registered
Joined
·
1,056 Posts
Terese, my heart goes out to you as you learn of this diagnosis, but be encouraged that this is not the end of the world.

I don't have any professional help for you, only that I have a friend with this and I so enjoy his company and am willing to accept his little quirks to have him as a valued friend.

I have read that there are many famous people with this condition. Einstein is suspected as having this as well as president Kennedy and even Robin Williams and Jim Carey.

Please keep doing research and I hope and pray that you find a workable solution for your family.

big hugs from me
 

·
Premium Member
Joined
·
3,166 Posts
I am probably on the spectrum; an autism diagnosis was mentioned when I was a kid, but they never made it official. Aspergers wasn't a possible diagnosis then.

Quite a few aspies do just fine, or better than fine, as adults.

Childhood is hell because we're different and being different means you're singled out and picked on. I had a hellacious time in high school because few teachers made any accomodations for the fact that I CANNOT track a spoken conversation for more than a few words in sequence (i.e., you might as well be speaking Greek if you lecture at me) -- even when this was documented and medical records provided -- and I was bullied by both students and some teachers.

As an adult, I'm doing fine. I have a good job, friends, and a pretty normal life. Other adults are alot more accomodating if I have to say, "Huh? I'm sorry, I didn't catch that ..." than kids are and I communicate via e-mail a lot with people so I've got it in writing.

By the way, the single biggest concentration of Aspies interacting socially that I know of is SF fandom. If your kid is older (mid teens or older) and likes science fiction or fantasy, you might encourage them to get involved online and attend some cons. Half of fandom has aspergers, and I'm lumping the pros in with that assessment!
 

·
Registered
Joined
·
49 Posts
My son (8 yo) has been diagnosed with AS. He is a happy, healthy, very loving boy. He loves to hug, and really enjoys lots of things. We have placed him in therapy with our local community mental health center and have him in OT/PT/Speech. He is in a special class for special kids at school (only 7 in the class) and he LOVES school.:bouncy:

One thing we have done is change to an all natural diet with no dyes, preservatives and minimal sugar. We have our whole family on the Feingold diet (www.feingold.org) which helps us understand the natural part of manufactured foods. We have also learned that a very structured routine helps tremendously. Any diviation from routine is very disturbing to him. We have learned to roll with the flow and know that he enjoys life no matter what. He has made great progress in therapy.

We also know he will never be "normal" but we have also learned to redefine normal. He loves life and we do too. Through much prayer, and support of each other we do make it everyday. Don't forget, he shows his love in his own special way.
 

·
Registered
Joined
·
2,726 Posts
By the way, the single biggest concentration of Aspies interacting socially that I know of is SF fandom. If your kid is older (mid teens or older) and likes science fiction or fantasy, you might encourage them to get involved online and attend some cons. Half of fandom has aspergers, and I'm lumping the pros in with that assessment!
:rock: My AS son is really, really into this! Since I'm a long-time SF fan, it gives us a connection.

With him, the main problem seems to keep him grounded in reality - he has grandiose plans & doesn't see why they won't work. Also major procrastination, but that's my problem, too, so I don't consider it an AS problem.

It's worse to have an AS spouse than child. Believe me! It's taken a long time for me to adjust & learn to live with it. To his credit, he knew there was something wrong & tried to warn me before we married, but I was in love! Still am, fortunately, so we just keep working on it.
 

·
Registered
Joined
·
1,224 Posts
Discussion Starter · #8 ·
He is in a special class for special kids at school (only 7 in the class) and he LOVES school.:bouncy:
That would be nice! We have no "special classes" at our school...everyone is mainstreamed
so he is in a class of 24 kids (he is 7 1/2).

One thing we have done is change to an all natural diet with no dyes, preservatives and minimal sugar. We have our whole family on the Feingold diet (www.feingold.org) which helps us understand the natural part of manufactured foods.
I have had Noah on Feingold for 2 years thanks to the good people on this board advising me so. I am not as rigid as I was in the beginning but still eat organic as much as possible because the artificial preservatives really bother him.

Thanks for your encouraging words everyone.

Bufford- I have marked the sites you found and will go back to them later.

Tracy- thanks for the book name. I am reading everything I can get my hands on.

AR Transplant-Thanks AR...I hope someday my son can find a friend like you.

Cygnet-It's good to hear things get better as an adult. I am trying all I can to make his childhood less traumatic.
 

·
Carpe Vinum
Joined
·
1,735 Posts
My son has Aspergers, and we are in PA. You need to contact Welfare and apply for an Access card for him, you'll need his diagnosis. Hopefully you'll only have to fill out a disabled child application, but you'll still have to supply all your financial information. Depending on his age you would contact either Early Intervention or the IU(Intermediate Unit) for you area. They will assess him and write him an IEP. The IEP is both an educational plan and a services outline, and its a legal document, once you have one you can force both the IU and the school system to follow it. You need to go to MHMR (Mental Health Mental Retardation) and apply for Provider 50 services if you feel you need them. A Provider 50 company would provide a TSS worker to follow him in school, a behavioral specialist to coordinate and implement his treatment, a mobile therapist to come into the home, and a Dr to evaluate him. They will also advocate for you with the school and the insurance company. You need a PA Access card to pay for these services. There is also a grant of up to $500 for children in the spectrum for summer activities thru the state.

Now for the bad part, this is a lousy time in PA to be applying for any kind of services. PA has decided to slowly turn their system over to Managed Care county by county, meaning that an insurance company will now be deciding what services your child needs not a Dr. Its happening here right now, and the insurance company is cutting services left and right, with the mentality that the schools should be taking over these services. Needless to say many here are fighting to keep their childs services, and the schools attitude is one of 'we can't pay for it, they'll have to go to a special school'. Its a very ugly situation, one that will worsen with time. Whats happening with my son is their trying to eliminate his TSS, she stays with him thru most of the day in school, keeps him on task, focused and she deals with emotional outbursts. In the past when she was removed he regressed and sat under his desk for hours. Her presence allows him to function well in a class of his peers, and teaches him much needed social skills. Without her I fear they won't be able to keep him in a regular classroom. But Managed Care only cares about their bottom line, not the children their supposed to be serving.

In your place I'd try to line up services regardless, and go from there, Good Luck!!!
 

·
Premium Member
Joined
·
4,281 Posts
Where do we go from here?

The psychologist gave the diagnosis..I have been reading like crazy to learn all I can. I have contacted the local Autism Society about support meetings. I know I will have to do something at his school (I guess). His teacher knows and is supportive to a point.
His school is required to set up at IEP (Individual Lesson Plan) for him so they can tailor his academic needs to fit his abilities. Don't sign until you are satisfied with it. Ask the special ed teacher/department for any resources they can provide. Social services can also tell you about resources. Look for an online support group too.

It's tough, but not the end of the world. Now you have the official diagnosis and can take action. Lean on us as much as you need to.
 

·
My kids have hooves
Joined
·
2,227 Posts
Diagnoses are great: they provide a common language to help understand a child. There's an equally important question, though, and that's what does the child NEED?

No ASD child is the same. I've worked with Aspies in self-contained special education classes and I've worked with kids who only needed social skills training and some OT for fine-motor issues. Hopefully, your psychologist didn't just diagnose but also gave you some concrete recommendations re. what to address and how to go about that. The evaluator needs to do more than just "admire the problem", s/he needs to give you direction, too.

With respect to what schools are required to do, and how to go about it, check out wrightslaw.com. Pete Wright is a very well-known SPED attorney with a great website.
 

·
Premium Member
Joined
·
2,230 Posts
We think my nephew has Aspergers although it is not diagnosed. He is 22 now but has always had a problem which seemed mental. As a child he had a hard time in school and kids picked on him really bad. He has mannerisms that are odd. He was tested and had counseling but they could not find the problem. He is in the navy as of December 1 and I am very concerned about it. So far I guess he is doing ok but then I'm not sure we would know if he wasn't. He is at Great Lakes Naval Base in Rantoul(sp) IL. A phycologist my sister talked to said that was the worst thing he could do if he does have Aspergers. Good Luck with your child. It is good to have a diagnosis.
 

·
Super Moderator
Joined
·
16,906 Posts
7 1/2 is a most excellent time for the school to teach him any basic skills he might be weak on. Other kids pick up skills without help but an aspie might need them explained (like raising your hand if you want to speak, standing in line, etc)

My son ALSO got some one-on-one for things like what facial expressions mean, how to greet a young adult vs an older adult vs another child, and when to do each.

And so forth!
 

·
Registered
Joined
·
277 Posts
Nami - the National Alliance for the Mentally Ill might be useful to you.
I belonged to a support group in Nami for quite some time.
I learned a lot and there were parents with children who had Aspergers in the group.
 

·
Registered
Joined
·
50 Posts
I have a 7 y/o DD, we have been working on this since she was 4. It does get better and easier! Take a deep breath, you can't do it all at once. Start with developing a plan for your child. You will recieve some kind of a written report from the Dr. which should identify areas of strengths and weakness. Use this and your knowledge of what is the most trouble for your child, pick one or two areas to concentrate on. In the begining for us it was meltdowns and social skills.

I used the Starving brains book for information regarding supplements and diet. It is written by a Dr and she explains the theories behind the treatment in a way that is understandable without being overwhelming. The best messageboard is the Barb Kirby one, many parents with been there and done that knowledge, it was a wonderful resource for me. She also co-wrote a book with another mom who has a son with AS, it is The Oasis Guide to Aspergers. It is a good reference for all aspects of AS and can point you to more indepth resources for the things that pertain to your child. If anxiety is a problem for your son, Parenting your Asperger Child by Alan Sohn and Cathy Grayson is very helpful in both understanding how and why a child could have anxiety and practical advice and techniques to use. There are so many books out there that I found it helpful to check with the local library and get the books I wanted through the lending library to read before I spent money on something that wasn't useful for my child.


Please remember this is a syndrome, a collection of symptoms. Your child is an individual with some of these behaviors and symptoms, it doesn't define him and it doesn't have to limit his future. You are the one who will spend alot of time educating yourself and then advocating for him. It can be overwhelming and frightening at times but it is worth it to see them grow and blossom.

I know my daughter is a special blessing. She has helped me learn to be not only a better mom but a stronger and better person.

Rhonda
 

·
Registered
Joined
·
49 Posts
One thing we have discovered is that "we have to fight for him". We fought to have the classroom because he was doing poorly in the mainstream. We, along with another family in our community, had to petition the school board to begin this special class.

We were able to get him on KY Passport (medicaid) to help pay for all his therapies because there is no way we could afford all he requires.

It does get easier, as rhondajk said. Just keep on looking for new ways to stimulate him to grow and learn. You will be surprised at how wonderful it will be. My son is now learning to read and do math.

There are lots of resources out there. Just keep digging and praying.:happy:
 

·
Registered
Joined
·
109 Posts
A friend's son was diagnosed a few years ago and she believes that diet is everything. He is on a gluten free, dairy free (caesin) and as little sugar as possible diet and she says it made a huge difference. He is a very well behaved young man and does well in school. Before the diet it was much different. She keeps in touch with others online in different autism forums.
 

·
Premium Member
Joined
·
16,652 Posts
My main suggestion is to remember that your child is the same kid he was before he was diagnosed. They don't become the diagnosis. I know that may sound strange, but when my DS first showed signs of having a learning disability I did a lot of research and tried so many things to help him, only to find out that we no longer just enjoyed being with each other. Our whole life became methods to try to help. The GFCF diet helps a lot of kids. It's a very hard diet to do, but is doable. Yahoo has a GFCF group that a friend of mine belongs to. She swears by it. Many have tried fish oils and have had varying results from them.
 

·
Registered
Joined
·
1,224 Posts
Discussion Starter · #20 ·
Thank you so much everyone. It is a stressful time and that's why I asked for advice..you just don't know what to do next.

Honorine - Thank you for the step by step for PA. That's exactly what I needed.

We are lucky enough to have a national renowned center here that deals with Autism/Aspergers.

This Saturday I am taking Noah there from 1-4 and they will have a group of no more than 12 kids..supervised by trained staff and he will get to swim, do arts and crafts,and gym. These are all the things he loves...but the coolest thing is we can leave him and not worry about him.....I'm sure some of you know exactly what I am talking about. If he has a problem or meltdown while he is there they will know just how to deal with it. It will be so great!!
 
1 - 20 of 25 Posts
Top