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Old 11-25-2008, 02:10 PM   #41
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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..........
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Old 11-25-2008, 02:19 PM   #42
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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?
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.
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Old 11-25-2008, 02:27 PM   #43
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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.
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Old 11-25-2008, 04:21 PM   #44
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If your circumstances permit consider transferring to a location where services are available for your child.
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Old 11-25-2008, 06:27 PM   #45
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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.
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Old 11-25-2008, 06:53 PM   #46
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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.
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Old 11-25-2008, 07:00 PM   #47
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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".
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Old 11-25-2008, 09:11 PM   #48
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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.
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Old 11-26-2008, 09:17 AM   #49
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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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Old 11-26-2008, 09:35 AM   #50
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But, between me, DW and others, I think I can cobble together enough. I hope I can.
If you can do what it took to put together that shadowbox in your avatar...
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Old 11-26-2008, 09:53 AM   #51
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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.
God always finds a way to help.........
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Old 11-26-2008, 10:56 AM   #52
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Consider contacting the special ed folks in your school district too. They may be supportive, or they may be a PTIA. No harm in taking their measure now.
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Old 11-26-2008, 11:21 AM   #53
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Thanks, I do think I'm making progress. I read a pretty good article about the role of dads and autism. #1 is THIS IS WAR. So, I'll attack it any way I can.

Special ed folks at the local school were pretty good, tho I don't expect many one on one hours out of them. Preschool only meets twice a week for 2.5 hours.

Anyways, thanks for letting me vent and giving me some options to think about.
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Old 11-26-2008, 11:41 AM   #54
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I would try to get the undergrad students for free first. I volunteered ( no pay) for several hours a week for a year when I worked with that family. I was about 26 with a masters degree and a full time job and found out about it because my friend was their music therapist. They had a full schedule of people with some paid and some volunteer.

Here's that link for the Option Institute's Autism Treatment Center and the cool thing is that the Kaufmann's formerly labeled autistic child is the CEO of the Institute and a trainer for their Autism Treatment Center. Autism Treatment Center of America: The Son-Rise Program
I looked at the web page and it seems very informative and has a link for forums too.

What a great dad you are. Some would be tuned out or letting their wife handle it. Your child will have a great advantage with the stong love and support of her father.
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Old 11-26-2008, 11:58 AM   #55
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Thanks, I do think I'm making progress. I read a pretty good article about the role of dads and autism. #1 is THIS IS WAR. So, I'll attack it any way I can.

Special ed folks at the local school were pretty good, tho I don't expect many one on one hours out of them. Preschool only meets twice a week for 2.5 hours.

Anyways, thanks for letting me vent and giving me some options to think about.
You will find a way because you are committed to finding a way........
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Old 11-26-2008, 01:01 PM   #56
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Exactly. Something that can't be overrstated is that your daughter will know/sense you are making her a priority. That in itself is huge. She will rise to your expectations.
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Old 11-26-2008, 06:14 PM   #57
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Actually, I am the primary care taker. My wife is tuned out and letting me take care it all. She still says DD does not have autism, despite the diagnosis. Flat out denies it. A few months ago I put DD in daycare because DW wasn't interacting with her too much. DW did the basic care tasks OK, but anything else wasn't happening.

DD really has made great progress since I stepped in, started doing A LOT more, and started taking her to daycare daily. Plus, I spend the evenings with her while DW works, so DD gets daddy from 0630 to 1830 or 1900.

I tell you what, this would have been much easier 20 years ago when I was 22. But I am very grateful I make good money now, have a nice home, decent job security and spent the last 20 years buying all of my toys.

Thanks again for the words of encouragement. I will ask for volunteers first!
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Old 11-27-2008, 05:33 AM   #58
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While I do not want to challenge or belittle the diagnosis - could some of DD's condition be the result of too little interaction in her first months of life?
Autism and Asperger diagnosis seem to be in fashion to diagnose people with little social abilities.
Any way, the better you help DD now at this early point in her life the better her chances are that she outgrows her condition.
It is the best "investment" you could ever make.
All the best to you, DD and DW.
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Old 11-27-2008, 02:04 PM   #59
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The idea of parental interaction or lack thereof has pretty much been put to rest for Autism. They used to throw it on the parents but extensive studies have sunk that line of thinking completely.

I think there is an uptick in Autism diagnosis because it is better understood now, and I think the medical community has fined tuned the process now. I know a couple people who have kids that had Autism ruled out and instead been diagnosed with subtler and less heard of issues. I really think they've learned from the whole ADHD/Ritalin debacle.
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Old 12-01-2008, 11:46 AM   #60
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Google Jenny McCarthy

her son has autism and she did some research and took care of him and supposedly he is a lot better now and she says very close to normal.
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