Kids with autism?

[droogvan]

Hi all. Wondering if anyone else here can chime in with some advice or encouragement. My daughter is 4 almost five (in October) and has been diagnosed with hyperlexia which is a type of autism. Hyperlexic kids can read often by two years old but social interaction is difficult. My daughter has very little concept of who, what, where, and why questions and meltdowns are frequent. Going anywhere as a family is stressful because I never know how she will react. Restaurants are out of the question. Stores in general can be pretty tough and shopping malls are brutal. All I can do when meltdowns occur in these situations is pick her up like a sack of potatoes and head for the door. People give us dirty looks like we're not disciplining our kids but it's not easy because she doesn't respond to disciplinary action.

If anyone else here has had experience with kids with autism I'd love to hear how you've dealt with it.

And yes I know I'm posting this on a vw forum but there are some real sharp people frequenting this site and I'm all ears if it can help.

Jack
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[Zeen]

An old classmate of mine has a child with autism and lives in GR. Here's a resource, best of luck.

http://www.hopenetwork.org/autism
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[eviloval]

1st thing 1st....get into a support group of other parents that have autism. Hopefully you can find a group that have kids at your level. The reason I say that is there are children that are low function and those that are high function. They are night and day in comparision. You don't want to talk about your child to a group of people who have low function. It hurts them like hell and your not going to find much in advise.

2nd....if she is going to a standard school make sure the school is aware of her condition. Children with autism cannot handle change...event the smallest change is a meltdown (mine sure can't....but she's getting better year after year). If the school has an IEP program they should be able to work on her on a 1 on 1 or small group basis. Even if its only a 1/2 an hour a week it will do wonders.

3rd.....if you have medical insurance they may be able to suggest groups that all of you can be apart of.

My little girl use to have a thermal nuclear meltdown when we went to a grocery store if she didn't walk out without a book or a candy bar. There was a few times that I had to walk her out on my shoulder pushing my car in 1 hand. Embarrassing, absolutely!!!!!! but there are ways to get past it. At one point my wife refused to go shopping since this would happen everytime. It took a lot of persistence and a few tears here and there but I can now go to the store with her without the issues (and have been for the last 2 years).

Unfortunately with autism each child is different. But the sooner you get a plan of action going the better off your child will be.
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[djkeev]

My youngest grandson has similar problems.

He is very fortunate for his parents adore him and give him the attention he need and the special help he requires.

They are also extremely patient with him and are able to shrug off the outside critics and not be bothered by what others may or may not be thinking. This may be key in long term success, doing what is right for you and our child.

Hang in there and persevere!

I recently read this.... They say that god won't give me more than I can handle.......I sure wish he'd stop trusting me so much!

Dave
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[busdaddy]

[splittybusgirl]

These places are very stimulating situations even for children without autism, it could be theyare getting over stimulated in these places. There is also a possibilty the lights or noises could be bothering them. I worked in a special needs classroom for several years and we had several autistic children that was affected when we went into different classrooms because of the lights, and then one that would get extremely loud when we went to lunch when the other kids came to lunch, because he was over stimulated. Hope this helps!
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[Busryder]

[wbrown45]

I am a special education teacher, and have taught autistic children from the ages of 4 through 14. The key to successful mainstreaming is finding a school staff that is supportive, and proactive in her needs. If she isn't getting any services from a school, or program of some type please get it ASAP. There are many forms, and degrees of autism, so early diagnosis is critical to ensure she will have a successful school career. Never forget that you are her number one advocate and you have the right to ensure she receives all the services she needs. I love all of my students, past and present. My children with autism have a special place in my heart. I think it is cool Busryder has a lot of experience in this area. If I can ever help please PM me with specific questions.
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[DAIZEE]

This is not a big deal BUT I watched a program on Autism. It addressed the older child i.e. double digits and spoke high praise for programs offered on tablets and laptops. It stated that the instant response of the appliance to what they are trying to say was marked. I wrote down all the info for the local program and gave it to a lady in my apartment bldg. The child gets very into communicating via the appliance and the study shows that they get the incentive they need to communicate. I'm sure it's not the same for each person affected but I know from my days in trauma medicine that patients being ventilated and/or who had suffered strokes and could not speak, got less frustrated when given the opportunity to communicate through a device. Apparently now there are all kinds of simple and yet sophisticated applications out there. You only have to track them down.
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Mental Health issues affect us all. Ignorance is not bliss. It's up to each of us to educate ourselves.

[droogvan]

Thanks for the replies everyone it speaks a lot of the quality of people frequenting this site. We are having her tested to help determine the best school for her next year. The day I posted this was after a seemingly all day meltdown and I was just exhausted. It's comforting to know that we're not alone in this though it feels that way sometimes.
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[chazz79]

Just love them! I can assure you we turn out fine. With age comes the tools nessessary to work around the quirks and become a productive member of society.


In youth their minds race and focus is easily lost. The resulting frustration usually causes the outbursts. Later in life this focus will make them extremely adept at one thing. Start figuring out what makes them tick and feed that monster. As a kid the only thing that I found calming was taking things apart. This manifested into becoming a mechanical genius. Don't ask much more of me though...I'm a bit of a one trick pony.
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[thewalrus]

I'm not sure what kind of help or comfort I can offer but, I can tell you about my point of view. I've been diagnosed with Auditory Cognitive Processing Disorder since day one and spent my whole school life in and out of Special Needs classes. Basically it means it took me 10x as long to do tests, answer questions and understand verbal instructions and such. I still struggle with it today but it's something I've grown to live with. Although, in the Special Needs Classes in school I received exactly the help I needed. Along with the amazing staff that was always there, I was around various level of Special Needs students. Let me tell you they were always the first people I made friends with and were always the most friendly, happy accepting people. I still keep in touch with them through FaceBook and such. Still not sure what my point is. Maybe to ease your concern about your daughter in Special Needs classes? I hope I helped in some way.
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[Glenn A]

[DAIZEE]

When I think of autistic kids, one word that always comes to mind is FRUSTRATION. No I don't mean the frustration other people have due to their actions, I'm talking the frustration that they feel because their body or their mind doesn't do what they want it to do. I liken it to being similar to what stroke victims feel. Their minds still work but they can't speak or they can't walk or shake hands. It's frustration at themselves. If only more people could understand that frustration then perhaps that would be the start of positive results. Yes I realize I have over simplified it but sometimes simplicity is necessary.

I have a young autistic friend who lives in the building. I can get her to hold my hand and walk with me and laugh and be responsive a lot of the times but sometimes she is just 'closed' off. Each time I see her tho my feelings are positive, in the now moment.

Just remember the frustration from the inflicted's viewpoint
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84 Vanagon GL Wolfsburg Westy WBX 4 speed (sold)

Mental Health issues affect us all. Ignorance is not bliss. It's up to each of us to educate ourselves.

[cory464]

i have a son with aspergers. i have to say the hardest challenge for me has been other people, especially my parents who refuse to believe that there is anything wrong with him. they assume that all of his problems are due to bad parenting. it is a prison of sorts, being afraid to take him anywhere for how he might react. yes we have had the meltdowns. according to my dad he just needs a spanking. trust me i have tried, those do nothing. it has really brought my wife and i closer together, but i can see how it can rip a family apart. my other kids are great (yeah they have a few quirks). i have had to move from neighborhoods due to his behaviors, and interactions with other kids. thing have greatly improved as he has grown older (11 this year) but we still struggle. aspergers is extremely difficult, because so many people try to pretend it doesn't exist. and with a high functioning kid, it is hard to get anyone to realize there is a problem. thanks for opeing up this discussion. in referenc to the original poster, hang in there, it does get better.

[wbrown45]

[mark tucker]

I have a grandaughter with aspergers,. the real only thing I wory about is her trust issues. she dosent have any.nobody is a stranger, everybody is a friend, hmm why cant the whole world be like her???

[flemcadiddlehopper]

My Son has Aspergers. He is now 20. Elementary school was very difficult for him. He was diagnosed as "gifted" first , then adhd. It wasn't until he made the move to middle school and we were having a team meeting with all teachers involved, that during the discussion of his needs a teacher wrote on a small slip of paper "search aspergers syndrome" and slipped it quietly to us.
We did.... and answered a questionaire online that was very conclusive. We could not only believe that we answered the questions to match his condition, but what question they were asking. he was later professionally diagnosed.
Once our son got to high school things went much better. The classes that an aspergers person takes are different than the general population (physics honors, algebra honors, calculus honors, robotics, computer programing) and a large portion of those classes ,including the teachers, either have aspergers or are undiagnosed. so things will get better, maturity helps. These kids have very high IQs but very delayed EQ (emotional).

What worked for us in the early years was behavior modification classes(for us). These helped us learn to : redirect, ignore, positive re-enforcement techniques(goals and rewards).

When our son was very young (2ish) we would be walking with him through a busy mall and he would take off on us and hide, very stressful. So as a result we built a harness for him, he didn't like it much. So the rule was if he walked beside us and stayed with us, he could hold his own harness. Aspergers kids are very rule bound, many can't even lie, so this style of parenting worked very well for him. We would ,with him, set goals for his behavior (outbursts) and have a calandar made so he could mark off the days of good behavior to add up to a prize. We would let him choose the prize and how long before the prize(surprisingly it would be longer than we would have set and the prize was generally less than we would have chose.)

another avenue to look at is RDI,(relationship development intervention) with Dr. Gutstien. It deals alot with facial referencing and has many games to play with your child to help fix the missing interactions. Yes I do mean fix. It really is an amazing program, we just came upon it too late (our son was too old).

You have lots of work ahead of you...keep a sense of humor about everything, otherwise it will drive you nuts.
If it helps I believe Sheldon from "The Big Bang" has aspergers and he has a doctorate degree.

All I can say is you are lucky to have a diagnosis at an early age, when your child is twenty you will be much better at this than I am.

gordo.
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[The Sage]

Jack,

I am an advocate for CAUSE in Michigan. When it comes time to get your daughter into an IEP (Individualized Education Plan) with Kent Co. ISD, you will face some push back. GR and EGR are very reluctant to support IEP's.

If you need help, PM me. I have helped several families in GR navigate this process...

Listen to what other suggest about therapy early, it works. Also, be thankful to all the citizens who recently campaigned to get Autism therapy covered by insurance in Michigan.

Sage
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