Question: How does everyone here deal with it?

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I have a 9 year old daughter with Aspergers and a few other things. There are all these therapy's out there. They all seem to cost a ton of money. Most are not covered under insurance. My daughter has been going to Occupational therapy and after 60 consecutive days they will no longer cover it. I am lucky as my doc was able to get an additional 60 days covered. There are also social classes that are $40.00 a week which i am pretty sure will not be covered. I am lacking faith that the school will acually help so i want to start some things in the mean time.

I have a full time job so do not qualify for assistance. My daughter also gets Social Security because her father past away. I did apply for medical on the advice of my doc. Hope that gets approved. She said most likely it will because of the issue of my insurance not paying claims. I want to do the best for her and make sure she can become sucessful just like every other parent wants.

I am also afraid of lossing my job because of the time i must take off to take her to these appointments. If I loss my job we would end up homeless. I really do not have anyone to help. I am feeling really frustrated right now and have no idea how to deal with it all. Any advice will be appreciated.

Thanks,
Anna

This is a tough one. I hope someone has some ideas for you because I remember how frustrating it was dealing with a lot of things like that when I was raising my own daughter.
We have been seeing some student therapists lately who we have specifically asked to help us with difficulties like that (for example having to be two places at once) and they have actually been very helpful and had some good ideas.
I wish you luck. It is very hard to be a working mom.

I have a 19 yr old son with AS. Social skills training is really important. I don't know about occupational therapy. Does your child have fine motor problems? Mine does, but never received therapy for it. He manages OK without it. His penmanship sucks and his typing is with one finger, but he is in college.
The best advice I can give is to find a competent child psychiatrist. This will be your best resource for the newest and most effective treatments, therapies. They will also help you with getting correct programing in school. Don't be afraid to try medication. My son does real well on it. Without it he is non-functional. He realizes this and continues to see a psychiatrist and take his meds even though he is away at college in another state. He's studying to be a pharmacist.
I have always been up front with my child and my family about his diagnosis. It helps my son understand why he is different. It helped my family be more accepting of his little idiosycracies when he was little.
Don't be afraid to set high standards for your daughter. Most AS kids are very bright. Your daughter may need help with organizational skills, especially as she gets older and gets long term assignments in the upper grades. My son was mainstreamed in the ED program at school where he got excellent help in the resource center but stayed in all the regular classes. I talked to his teachers at the beginning of the year so everybody knew what to expect and they were very supportive. Most teachers don't have time to read everybody's IEP, but if your meet with them as a group at the beginning of the year they will usually be happy to do that. I attended the team meetings during the year if they asked me to.
Now with my son in college, I continue to help him to structure his time by setting up a schedule to adhere to so that he doesn't miss important things like study groups and assignments. It involves a calendar he can write on and notes to remind him to check the calendar daily. I do some of the "leg work" on the internet to find things like the location and hours of the math lab at school, etc. He still has some trouble with these details, but does fine in the classes.
Participating in group sports and activities will be tough. We tried this, but when my son was young his peers were not particularly welcoming. It was hard for him to try to fit in where he was obviously not accepted. It was more hurtful than helpful so we stopped butting our heads against the wall. If your daughter is into activities, go for something where she can excel as an individual rather than trying to fit into a team. AS kids can't read social cues, don't respond appropriately, and get confused and hurt by the constant rejection. They don't do well in groups. One to one they function much better. Being competent at something will improve her self esteem and if she is a good athlete it will bring her increased acceptance by her peers. Swimming is good because it doesn't require a lot of fine motor coordination. My son swims like a fish.
Your daughter will never be quiet like kids who don't have AS, but that's OK. No two people are the same anyway. She can be very functional if you get her the help she needs. One writer called NASA a sheltered workshop for AS people. They focus in on the things that interest them, never tire of their specialty, and become real experts.
Best of luck to you!

pink

some places offer sliding scale fees. have you tried talking to the providers about this ?

Welcome to group - I hope we can provide some support. It is going to be tough for you to pull together the time and money to do what's best for your daughter, but hang in there - we all go through it. First I would say to fight for whatever insurance coverage you can get. Sometimes you end up spending a lot of time on the phone talking to a lot of different people, but eventually it usually helps. Some doctors can also be very helpful with this - coding things right or talking to the insurance company themselves.
My son has seen psychiatrists and psychologists - I view the psychologist as the primary dr. - find one who understands AS. The psychiatrist is helpful if your child cannot function without meds, but that's about all they're good for (we've seen 6, so I have a pretty good idea about that).
The other REALLY important thing is the school environment. They need to be in a supportive place where everyone is valued and included and bullying is not tolerated. AS is very hard for some teachers to "get" - the kids are often so bright and articulate, that some teachers think they're just lazy or stubborn. Do whatever you need to to stay away from those teachers!
As far as the time away from work, I am very sympathetic. I ended-up starting a consulting practice 6 years ago, and a big part of the reason was so that I could have control of my time.

Thanks everyone for all the advice. My daughter does participate in horseback riding which she loves. Anything to do with animals she loves. I know about the coding and stuff the docs to. Mine just did that for me. My daughter does have fine motor and balance delays. That is why she goes to OT. She also has sensery concerns. We are working on those things. I just get so worried about it all. I will also look into the sliding scale fee stuff with the social skill thing or see if they can somehow get my insurance to accept it. I will write more later. Time for work.

Thanks,
Anna

Keep working with the school and try to get some OT and other social therapy there. Our school district offered a *lunch bunch* once a week for kids with social issues which was run by a psychologist. They also had a p-t OT for handwriting and other fine motor skills. It wasn't the best therapy, but might help fill in some gaps.

Try to find a Center for Independent Living near you. Ours offered a youth advocate ($free) and also offered some great resources for trying to find those low-cost, sliding scale type services. We found ours via internet search.

How about just doing it yourself?
There's nothing a 9 year old have to do that is so important that you couldn't instruct her yourself.
I've had professional counseling on only one occation, on how to apply for jobs, because I don't think as NT people do.
That's all the professional help I've ever had in my entire life, and I'm 25 years old.
Unless your daughter is a vegetable, I find it hard to see why she would need anything more.
Just raise her the old fashioned way, only you wll have to explain WHY things are a certain way, WHY she should behave a certain way, and HOW and WHY other people thinks, acts and reacts in certain situations, so that she have some kind of reference.
I think you could do just as good a job.
Do it when you're both home from school/work.
If you're uncertain, just get one of those books on how to behave properly or something, which at worst could lead to the situation where people might think she behaves oddly, but at least they can't complain about it.

Besides, parents and their children should have as much contact as possible. I would not want my children to be raised by strangers.
You'll also save money which you can use for better purposes. Having food on the table is more important than behaving properly.

What's penmanship, and what's wrong with typing with one finger? I type with one finger whenever I'm feeling lazy, and no one really gives a crap, and I normally type with only two fingers.

My son is almost 12, dx'd at 10, and has never had any therapy as far as going to a psychologist, etc. His school runs a "game time" program, where they get some kids on the spectrum and some NT kids together (hand-picked and okayed by their parents for a "social friendship time") and he learned a ton about interacting, taking turns, personal space, lots and lots of social skills.

He also gets pulled out 15 mins a day for handwriting class, though this year in middle school I'm fighting for an alphasmart.

Everything else he's needed help with he's gotten from me. From organizational issues to sensory, there's no magic formula, nobody has "the answer" for your kid, it's all hit and miss anyway.

My son has come a long, long way since his dx, and is doing remarkably well. For some children if you can help them deal with their anxieties and other issues, then meds and dr. visits are unnecessary.

One of the complaints (among many) of the Autism Every Day video - one said something like it was having to send your kid to Harvard every year. While some people feel compelled to do that mostly through expensive ABA programs - alot of familes really do not have that kind of money to spend and their kids improve just fine. I was doing some research recently and came across this article from Kanner (one of the original researchers into autism) and despite what bio-medical and behavioralists claim - a certain number of the kids in his study did just fine as adults and without all the interventions that they have today. One of his observations was that the kids who were very successful were "allowed" more of less to confront their environment on their own terms while being supported but not pushed. It makes you think about if some of the interventions done actually inhibit the development of the person with autism by forcing their progress.

Ion and walk-in-the-rain have very good points. This may be a little inflammatory to some readers, but the thing that helps me manage the autism thing is to simply let go of the concept of trying to achieve the almighty 'normal'. Yes, I completely agree that people need to learn the skills for independence.

Just remember that society's version of 'normal' includes all of the B.S. with trends, cliques, and keeping up with the Jones'. Seems like a bunch of needless hassle to me.

As far as normal is concerned I like that my daughter is different. Normal is boring anyway. She already know what she wants to do in her life. I just want to make things easier for her so she can achieve her goals. I plan on getting some of those social story books to use with her also but I still want to get as much outside help as possible. I do have faith that it will all work out for the best.

Thanks,
Anna

I think advice being given is spot on. My son is HFA and we experienced the same issues in Indiana and California, that is, the experts knew less than us. They were less informed, less in tune and really not even autism specialists. They were more interested in extreme behaviors that my son was already learning to abandon. We didn't have to pay for it, it was paid for by the state. California has the Lanterman Act, which requires the state to ensure that people who have qualifying developmental disabilities are taken care of appropriately. They have a centralized system that assigns you to a regional center and then a caseworker. They handle everything from researching what monies you may get, applying for SSI, helping with emergency supplies and getting professional services/therapies.
My son is simply too high functioning to benefit from those types of interventions. The things he's really been helped by is home-grown tools. I make my own "social stories". They are now cartoon doodles that I can produce anywhere and we call them schedules. Finding playgrounds with tolerant children helps too. Usually in racially/economically diverse neighborhoods there are children that will play with him and tolerate his autistic traits.
I agree with the idea that changing jobs to fit your son's schedule may be really helpful too.

instead of social skills classes, why not try girl scouts? a smaller troop might just be a good solution . if you stayed at the meeting, you could even help your daughter navigate all the various social aspects.one of the great parts about girls scouts is that it can be a very economical solution for your family. when my aspie son was little, he was in cub scouts. it was a great experience for him to learn how to get along with the other boys.
i am the troop leader for my daughter's troop of 8 girls ( including her). it is difficult sometimes, buit i feel that it's good for her to have more time practicing turn-taking ( both in games and social conversation), and working on her fine-motor and gross-motor skills.

Not to take this thread off topic but I have noticed this too. Affluent/ white groups of children seem to be much less tolerant of disordered behavior than poorer/ racially mixed groups of children.

Good luck with your daughter. Remember, YOU know her best.