Dammit! Autism...

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!
 
Bimmerbill said:
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.
Click to expand...

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.
 
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.
 
Hang in there, Bimmer--your daughter sounds like a sweetie and is lucky to have you as a dad.
 
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.
 
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.
 
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.
 
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.
 
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.
 
Thanks, I remember seeing a story on him on TV. Must have been 60 minutes or Dateline, or some other news program.
 
Bimmerbill said:
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.
Click to expand...

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 :D. 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.
 
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.
 
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?
 
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
 
Any government assistance, grants, etc,you can apply for? I admittedly have NO knowledge in this area, my son was a "late developer" but now is a year ahead in school..........
 
Bimmerbill said:
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?
Click to expand...

Dang it! I wish I had seen this earlier. My daughter has Down Syndrome and is involved in many types of therapy that you'll be interested in. DS and Autism are two of the most common and we have significant contact with parents of Austistic children through the therapies.

We are active in some national groups, I just asked DW to send me some data and I'll PM it to you. My quick thought is of all the therapies, horseback riding has produced the greatest results for both my daughter and the children I know with autism. One young man who wouldn't talk to me or even look at me started riding with my daughter. After a few months he couldn't stop babbling and just loved it. I don't know if his enthusiasm for it broke down whatever barriers just at the ranch or outside it as well, but the looks on his parents face said it was completely worth it either way.

My sister was diagnosed in the autism spectrum, and it was definitely noticeable. She would shut down in crowded rooms, I had to hold her to keep her from getting upset. She distrusted all strangers as a rule ( one plus side, I guess). Even around the dinner table she had trouble verbalizing an emotion. Fortunately her younger sister was extremely close to her (still is) and could translate. Relief would spread across her face when her younger sister stepped in.

My sister is now at Rutgers, fwiw. There is still issues, but at 21 she is really doing well, far better than we hoped.
 
You've probably already found autism support groups in your area--I hope they were helpful in finding more resources.

My good friend's daughter has disabilities (multiple developmental) and from the time she was born they practically lived at Easter Seals. I just looked at their website and saw they have services for preschool age autistic children (Easter Seals : Autism Services for Young Children). I don't know where you are but they have services a lot of places.

I don't know about the financial aspect but I think they work hard to make their services available to all and do a lot of fundraising to keep costs low.

Bless you and your family, Bimmer.
 
If your circumstances permit consider transferring to a location where services are available for your child.
 
About 15 years ago I did volunteer work with a family whose son had autism. They went to the Option Institute in MA and followed the intensive play therapy oriented approach the Institute promotes. It did work wonders. The founders of the institute worked with their own child, and they believe he is no longer autistic. Off to college, travelled the world, the whole "normal" life. I would recommend checking out the website and books. The family I worked with used speech and OTs and other therapists as well as concentrating on the food sensitivity issues. And they used a lot of young people who volunteered their time to come and play with the boy. They tried to do that all day long (before school age) and had a dedicated room in their house for it. The point is to create a bridge to their world and make what you are doing with them compelling enough for them to cross that bridge and come play with you with lots of eye contact and other interactions.

Also, my sil is a special needs teacher and really likes the books by Sidney Greenspan. Good luck.
 
I had sunk into despair earlier today. It is hard not being able to provide for my daughter. I am very responsible, work a good job, have great bennefits.

There are some grants available, I am working them now. Most are for kids much worse than dd. I will still pursue them, as more therapy = better, from everything I've read.

I may consider moving to a state that passed an autism law requiring insurance agencies to cover treatment. Trouble is, I don't think I'd do well without family/friend support. I also considered joing the military, as TRICARE will pay up to $50K in therapy costs! Too dangerous, and dd needs me here I think.

I've been in touch with the local Easter Seals. Lots of great free seminars and other things, as well as a family support group. I'll go 10DEC and ask questions of those who have been there done that.

They offer a home based training program to teach Floortime to the family. Docs come out to my house, teach us 3 hours a month, videotape it, review and offer suggestions. Trouble is, its $400 a month, 12 month contract. Still, best bang for the buck, since I can invite family/friends to the training.

I feel a bit better now. Our speech therepist teaches at the local univeristy, and knows of grad and undergrad students looking to earn money, some specializing in autism. I can probably hire them for $15 an hour or so. Once I find a therapist/behavoirist to work thru, I can probably get some 1 on 1 time going at daycare.

Also may be able to arrange speech therapy at the university, paid for thru insurance. Grad/undergrad students could help/train and use what they see at the 1 on 1s.

Now I just gotta come up with $15 an hour, target 26 hours and go from there. Add that to day care costs, possible training costs, etc and things look bleak again!

Speech therepist did mention horseback riding. My town has a ton of horses and a local mom with an autistic kid started thereputic riding. I'll give it a shot. DD is actually making HUGE strides in language, joint attention and eye contact. Need to find out how to work on the social and emotional side of things!

Pedi GI visit looked good, will blood test for celiac when we do the genetic tests. Pedi Neuro visit next week. At least insurance covers all this stuff.
 
Good news. My only thought on the therapy is that sounds like a lot of hours being recommended. My daughter, at her peak of therapy ( OT, PT, speech, horseback riding, swimming....) was just wiped out, it led to some mild meltdowns. The problem is all the trucking around the county to get services. The home based program sounds like a big winner as your daughter will do better in familiar environs, IMHO.

I tried to find some resources, but I'm not having luck for your neck of the woods. I would say don't do anything rash, though. Your daughter is still a child who needs family around as much as possible. Moving or going back into the military is not the answer. We're always told in our support meetings, "Child first, disability second". :)
 
Bimmerbill:
Our son was diagnosised about the same situation about 12 years ago, I remember the feeling in my gut, and the feeling of helplessness. Fast forward, son is 15, in high school, doing very well. He was lost all ability to speak, communicate just before 3. My wife never gave up, kept on talking to him and teaching him when i urged her to give up, accept reality, she never stopped. When we ask Sean now why he didn't talk, he says "it was too hard" Don't dispair, its a lot of work, therapy can be done by you & your wife every day, its not complicated, read everything you can, learn about all the various interventions, but, bottom line, start along term initiative. Son was sitting in the corner smearing his feces into the rug & wall, non-communicative. Now he won't shut up, gets good grades, would be seen more as having asbergers d/o now. (like Bill Gates...a bit odd)
When you think child can see you, she does. When you think child can't hear you, she does. She will tell you that some day.
Good Luck, God Bless.
I have been there, done that.
 
Thanks, I feel better today. I was up at 330AM when we lost power and my dd got scared of the dark. We turned a flashlight on, but we always play with flashlights so she wanted to play not sleep!

She is very vocal, and making language gains each day. I am going to try to put together a team of people, to include undergrad/grad students from the state university.

Its hard when I read that 40 hours of one one one can improve a kid to such a degree that 40% of them lose the diagnosis of autism. I can't afford 40 hours! But, between me, DW and others, I think I can cobble together enough. I hope I can.
 
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