Dammit! Autism...

[Bimmerbill]

Quietman, thanks. My daughter tends to go off by herself too. That is part of the reason I enrolled her in daycare. As an only child she was just too isolated.

The 25 hours of therapy they recommended is engagement therapy/opportunities. I've been really stepping up my engagement. Its hard for me, as a natural introvert and nerd.

[samclem]

Bimmerbill,
There's a lot to be hopeful about in your post. You've identified the situation early, that will almost certainly lead to a better outcome. On a national level, autism is finally being recognized for the national challenge it is.

I had a co-worker whose son has Asperger's. He graduated from a demanding college program last year and is now workign full time. You are on a challenging road--but with great challenge comes great reward. You're thinking about the technical/logistics side of things now (identifying a treatment regimen, paying for it, possibly moving, etc) and I'd be doing the same thing. But, in your heart I'm sure you know that there's nothing that is more important than your love for your daughter, your patience, and the strength of your marriage and your family as you guys take this on. Best of luck.

[free4now]

One of the things I've been doing with my early retirement is exploring whether I have some mild Asperger syndrome. After researching autism and asperger syndrome it's clear that it's not a "have it or don't" situation like cancer. The range of expression goes all the way from completely unaffected to extremely affected. Whether you "have" it or not depends on where you draw the line. I think it's pretty clear that Bill Gates has Asperger Syndrome.

I've now interacted with about 50 adults who identify as having Asperger Syndrome (AS), most diagnosed by professionals, and the range is absolutely astounding. Many are folks where you would never know they had AS unless they said so, and then there are people who are unable to speak coherent sentences. Because AS was only popularized and added to the DSM-IV in 1994, most adults with AS grew up without knowing there were others with the same condition.

I do think that my adaptive autism spectrum characteristics (tendency to systematize, singleminded focus on things I'm interested in, often feeling more comfortable interacting with machines than humans, approaching things rationally rather than emotionally) are a big part of what got me into computer software and allowed me to early retire. So it's not a death knell by any means.

I do credit my mother with having done a great job raising me; as I read about what to do with aspergers kids it's clear that she intuitively did things right. It's basically a matter of meeting the kid on their level, being involved enough to keep the kid as engaged and challenged as they are ready for. So I do believe that early intervention is important. But there are an awful lot of quackish and just plain weird ideas about how to deal with kids on the autism spectrum. They give parents hope but may in the end cause damage. So be careful and use common sense in deciding what inteventions to apply.

If you are interested in Asperger Syndrome, the best book I've found is Tony Atwood's "Complete guide to Asperger Syndrome". It covers all ages from childhood to adulthood so it gives a good idea of what to expect, and what to do about it at various life stages, from a viewpoint that is both scientific and humanistic.

[Martha]

Quote:

Originally Posted by Bimmerbill Its hard for me, as a natural introvert and nerd.

But this will help you understand and relate.

[mews]

Good luck on your journey! My nephew was diagnosed as Asperger's and was able to finish high school and college. No, he's not 'normal' in the average sense, but autism is a wide spectrum.

There was an interesting article in the New York Times (Sunday?) on a school based on an 'engagement philosophy' for boys with autism spectrum disorders.

From what I know, from the outside, not as an expert, there is a lot that can be done while the young brain is wiring itself. Every therapy I have heard of is intensive - lots of time targeting specific goals and working on them in all different ways.

The theory seems to be to re-wire what can be re-wired, to compensate for the initial glitch.

Yes, my brother (my nephew's father) has spoken of seeing parts of the spectrum in himself. I'm no social butterfly myself, and can obsess very well when something interests me. That's why I have a Master's degree and trained for 20 years and earned a fifth degree black belt.

So, if you can get your daughter down to the 'focused nerd' side of the spectrum, that's a pretty good place to be, IMHO.

Good luck, and use support groups for yourself and DW too!

ta,
mews

[simple girl]

My friend's son was diagnosed with autism when he was very young (sometime under age of 5). They got intensive therapy for him, and they really feel it has made a huge difference. They had to pay out of pocket for the therapy (it was expensive, that's all I know), and they fought, and fought, and fought the insurance company to pay for it/reimburse them (they decided to go ahead and get the therapy right away rather than waiting for insurance approval. I'm not sure if they ever got reimbursed.). It was very stressful for them, but they made it through.

If you have any detailed questions, I can ask my friend (or ask her if she'd be willing to talk via email with you). They live in California, so no local recommendations, unfortunately.

Hang in there and don't forget that under stress spouses often fight - turn towards each other for support instead!

[Sue J]

Quote:

Originally Posted by Bimmerbill DD, who is 32 months old, was just dianosed with autism. I feel bad and very worried for her future. Docs said it was moderate to mild (wouldn't commit to a level, probably not possible now), DW is in total denial. Final report is due in 30 days. Looks like we can get some additional services for more therapy (she does OT and speech now) but not sure what my small rural town has for support. We met with them a few weeks ago and they have a 2 day a week program, half days. The docs recommended 25 hours one-on-one as a minimum. I may need to move to a bigger town/city with a good preschool that can support more services/time.

Is this through your county social services agency? In our state each county has an MRDD agency and they provide free early intervention therapies and preschools.

[youbet]

Hi Bimmerbill.....

I first noticed your post while sitting at the "parents computer" at the Easter Seals facility where I spend Monday and Wednesday afternoons with my oldest (of three) grandson. He is a cerebral palsey child. His issues manifest not unlike some Autistic children and, like your daughter, receives occupational and speech therapy.

He's 7. It's been quite an adventure since that night when my son called to announce my grandson had been born........ but with "some issues."

Currently, both his parents (engineers) work full time while DW and I have the time and health to help out. Quite an impact on our original retirement plans but we are more than glad to do it and I hope you are able to draw on some extended family support as well.

My grandson's daycare, before he began attending public school, was actually at an Easter Seals facility. Handy, since the therapists could just walk down to the day care room and pick him up when his session times rolled around. And, the therapists could instruct the teachers/care givers on activities they should be doing with him.


Today he is in 2nd grade at a public school where he is in a regular class room but receives some special instruction. And, as I said, I pick him up on Mondays and Wednesdays for sessions at Easter Seals.

My wife is a special education teacher. After a year of retirement, she went back part time at the request of her school district whose needs for her skillset have increased significantly over the past few years. She has one autistic child under her care now and advocates for others on a volunteer basis.

We'd be glad to share more on a PM basis if you ever feel the need.

[free4now]

The New York Tmes has a good overview of autism:

Autism - Symptoms, Diagnosis, Treatment of Autism - NY Times Health Information

[Bestwifeever]

Hang in there, Bimmer--your daughter sounds like a sweetie and is lucky to have you as a dad.

[bright eyed]

Hey bimmerbill, sorry to hear about the diagnosis. I think it's tough for a parent to hear your kid might have a harder, more challenging life than even the normal challenging life.

I think you've gotten tons of good advice here. I do agree with the above poster who said to make sure you and your wife stick together on this one, the divorce rates are high for parents with special needs kids. Sounds like you two are grieving/dealing in different ways, just give her some time.

There is a LOT of info - pro/con, expert, alternative, parents, scientists etc. I can't help you there, but I do agree with you that you should research the best school system to be in. There is a HUGE difference in the amount of services and how much fighting you will have to do to get them. I would spend a lot of research time there first to see if you are willing to move (or perhaps just need a transfer) and can do it, that will probably save you a lot of resources and headaches in the long run.

My son has special ed designation and gets tons of services and support from his school that kids in the next town over don't get. It's not just about income levels either since the two towns are about the same in that regard, just differences between schools.

Martha, i saw that Dr. who works with livestock on Oprah and she did mention that a lot of scientists/engineers are on the spectrum...i thought that was interesting! how many people do we know who would be labeled with aspergers? she is definitely a fascinating woman.

Not sure if anyone caught the special, it was on cable, maybe cnn or discovery channel about the kids who were labeled as severely downes - had very serious physical traits/habits, can't speak in sentences, do repetitive things to comfort themselves etc - but once they learned how to use the computer to express their thoughts revealed really high (some genius) levels of intelligence...it was one of the most incredible documentaries I have ever seen. So there are definitely new discoveries, innovations happening every day.

[Bimmerbill]

My wife thought DD had Aspergers, but she had delayed language. Aspergers has normal developed language, but the social side is affected. We all have quirks, and I have lots of them too.

Thanks everyone for the well wishes and info. There are lots of great links and info here. There is so much info out there. I'll work the system and see what is available. Also research local school systems to see what is available.

DDs OT, PT and speach therapy were all provided thru the state. They have an early intervention system that covers kids under the age of 3. Once DD turns 3, she transitions to the school system and their special ed system. Services do vary greatly from town to town. My town is rural, small, and appears to have limited resources.

I am glad I got the clinical evaluation and diagnosis. DW said I was just paranoid, but things were missing in DDs behavoir. So, the diagnosis opens some doors and hopefully will allow some more therapy. One on One engagement is the goal.

I'm struggling to not treat DD any differently and to not feel sorry for her. My mom says don't do that, it will turn her into a victim. DD is really a lovely girl, very sweet and always happy. She brings me such joy. I want the best for her and I guess I'm having a hard time with the uncertainty. DW says I'm a control freak and type-a, so maybe this is part of the problem. Sometimes it tough being the first born!

Once again, thanks for the pointers and well wishes. It helped me to get some of this off my chest.

[Orchidflower]

Had a friend who was off the charts smart with an overly-educated husband whose boy had one of the many forms of autism. One thing they did was give the boy piano lessons from about 6 on, which he seemed to really enjoy. And they enrolled him in so many activities as they could to help him find friends.
The boy finished high school, and last was heard in an assisted living situation at college and doing well.
This is a tough situation, I know, and the stab in the heart is one I have been thru...but, eventually, you will find out your overreaction is just that, the child will grow and find her place in society like the rest of us. She may not be President of the USA, but who wants that job (well, except Hillary)?
Just remember to take it ONE DAY AT A TIME. That this too shall pass, and to read/join support groups to learn so you will be totally prepared for anything that comes your way in the future. Keep the faith that all will end up well, because it will. You sound like such a great Dad, anyway.

[Orchidflower]

Oh, I am so glad that you don't plan to baby your daughter, and plan to raise her just like you would any child. So healthy!!!
I had a friend with an autistic son who felt sorry for him to the point he wouldn't talk to anyone but his family. I haven't seen them in years, but have wondered often how this boy turned out.
A kid who grew up across the street from me had autism, but his parents had other kids and treated him just like one of the others. Today he is very socialized, has lots of friends, works in the yard with his father alot, works part-time, and really is coming out well. Big difference in the way these two boys were treated.
It will make such a difference for your daughter, too.

[bongo2]

You may be interested in Born on a Blue Day, written by an autistic man in his 20's. He is obviously high-functioning (since he can write a book). He has problems, but has gotten on with his life, and done pretty well for himself. There is no need to give up hope.

[Bimmerbill]

Thanks, I remember seeing a story on him on TV. Must have been 60 minutes or Dateline, or some other news program.

[Alan]

Quote:

Originally Posted by Bimmerbill DD, who is 32 months old, was just dianosed with autism. I feel bad and very worried for her future. Docs said it was moderate to mild (wouldn't commit to a level, probably not possible now), DW is in total denial. Final report is due in 30 days. ........ But, man, felt like I was stabbed in the heart when they said autism.

Our son has cerebral palsy and my sister's daughter has asperges and the first thing I would say is that we went through similar emotions, but with time, patience and the right approach everything for our family is working out extremely well.

Our son went through the regular public school system here in Baton Rouge and received special training and attention, including speech therapy. He was on anti-convulsion drugs through to age 16 then was able to get off them completely . From age 7 we enrolled him in a martial arts class which was absolutely wonderful and after a few years he achieved his junior black belt.

Even though over half his brain was damaged he managed everything we never thought possible including driving a car and going to college. In March 2007 he graduated with a BSc in Computer Science and now works in the IT department at a bank.

My sister was similarly distressed on first hearing about her daughter's diagnosis of asperges at age 4, but like us they quickly decided that these days there are many options and lots of hope.

My niece has had special training and attention at school and responded fantasically well. At age 6 she was chosen by her school to be the person to present flowers to the Queen when she visited the town and laid a wreath at the war memorial (this is England).

Last December she went down to Downing Street with her shool teacher and met Prime Minister Gordon Brown along with about 30 other special ed kids around the country. She is now 10 years old and doing just fine.

Both my son and my niece are the most adorable people you are ever likely to meet, so please take heart that there will almost certainly be a very happy outcome waiting for your and your wife.

[Dreamer]

I am so sorry to hear about the diagnosis. I do not have any experience with this, but do think that you have received lots of good advice. There are definitely lots of resources out there. Good luck.

[Bimmerbill]

OK, I've gathered lots of info and made 100s of calls. I have to say its not looking promising. Local specialists charge $60 an hour for 1 on 1 therapy, but I've been able to find 1 short term paraprofessional willing to accept $15-18 for short term. I still will have to pay a psychologist/behavoirist to do an assessment and develop a plan that the para can implement.

Target is 26 hours of therapy per week. Costs between 20-$60. Insurance doesn't pay for any of it (well, maybe I can get some OT or speech, but unsure how much).

Anyone know of any way I can pay for this? I make decent salary, have top notch health insurance... It doesn't help!

Local school has special needs daycare twice a week for a total of 5 hours. I may get a 1/2 or 1 hour of OT/Speech out of them.

Where do I come up with the money for this? Or how can I finance something like this?

[Enuff2Eat]

Bimmer, sorry to hear it. No advice from me. DW just came back from volunteering oversea, and it's wasn't a pretty picture. Hang in there, be thankful for what you have and count your blessing.

We keep you in our pray.

enuff