Wednesday, March 30, 2011

My Unofficial Look at Autism Therapies

Raising children is like a dance. From as early as a newborn parents stick out their tongue and the newborn baby does the same. While having a child with Autism eventually I realized I would have to teach her to dance. Something, I still do not know what, got in the way of our dance.

Anxiety is one of many things that get in the way of the dance when you have a child with Autism and Aspergers. One of my goals was to teach her how to adapt her surroundings to reduce the anxiety and get what she needed. Medication was also helpful for the anxiety. This was particularly important for my girls when they hit puberty. The anxiety sky rocketed.

Some parents use RDI or Relationship Development Intervention to teach a child with Autism to dance. Some of the parents who choose RDI believe that the program really unblocks their child. Then their child really can pay attention and participate.

Many parents in forums and list-serves are reporting that the process of slowing down and waiting makes a huge difference. Some people on the spectrum do not believe that is entirely true. They think the child is learning to adapt for a period in the child’s life. Time will tell as more parents have access and use the program.

Another program that seems to the favorite of some mothers of girls with Autism is FIE or Feuerstein’s Instrumental Enrichment. If I understand it correctly the premise is that all people can learn when you build on their thinking processes.

FIE recognizes what we as parents run into all the time, society in general expects very little from children with Autism and other disabilities. The program builds cognition building blocks. He has been so successful as to get hundreds of people with Down Syndrome in his country into the military.

The parents who use it say it is a paper and pencil program. The only reservation I have come across is that some people with Autism feel that they are being modified in some way without their consent or opinions. They would prefer it if someone would help them change in ways they want to change.

It is a hard line for me as a mother to not be so flexible that I do not want and demand better for my daughters. At the same time I want to be flexible enough to allow them to be who they want to be. I want to have high expectations for my daughters with Autism and their typical siblings.

Monday, March 28, 2011

I'm having some trouble partly in my mind and partly not with the services that support my oldest daughter. She wants to go to the state's Annual People First Meeting. It is in another parish and the provider has given me a list of explanations about why it is a problem.

The first explanation was that they had to get special permission for her staff to be able to take her. The more I thought about it the more I thought that I had never heard of that before. So I called the waiver unit and asked them.

They told me that there was no 'special permission' that they knew of. They did mention that it could be an agency policy or procedure. I'm thinking ok but... So my next question was "Isn't the provider supposed to support her to do the things she wants to do?"

The answer I got that time was to put it into the CPOC. That was an aha! moment for me. I knew how that worked from 16 years with this child alone of IEPs. I called the case manager and left a message within the next couple of hours about that.

Anyway when I called the provider again. I was having trouble getting anyone on the phone. As a matter of fact that has been a problem all week. I did get the regional manager and she told me she was waiting to hear back from risk management. She needed to know how to word the paperwork.

I heard back from the DSP supervisor later in the day. She is having trouble getting staff situated. She requested 2 weeks notice to get the staff lined up. I will bring Dominoe myself if it comes down to it but I'm still not happy.

All of this to explain, I guess I'm going to have to fuss. I hate fussing. I feel I'm pretty flexible. When they told me I had to pay $20.00 every pay period to get a copy of the staff notes.

I thought that was pretty expensive. But ok, I'm willing to pay $520.oo for the notes this year. But there is a limit to what the provider should be trying to tell me... This is the limit. But I hate fussing.

Saturday, March 26, 2011

Autism Spectrum

I have heard a phrase the other day "fall off the spectrum". What a lovely phrase. I hope and pray it happens for some people with Autism. I wonder though. If you still have to use modifications and adaptations have you fallen off the spectrum...Just a lovely phrase though!

Thursday, March 24, 2011

Staffing Notes

My oldest daughter has always had problems with behaviors. One of the things the state is requiring to keep her level of in home supports is a behavior plan. It has been difficult to get the provider to produce the documentation that is needed.

In an effort to make sure it is done I requested the Direct Support Personnels (DSP) shift note. That was an interesting story in it's self. But I read them! I am so amused by the wording. Nothing bad, I'm just amused.

Some of the things written are soo interesting. The DSPs sign in one after another and it is so enlightening to read what is done from one shift to another. I am sure they do not read each other's notes.

Every surface, including floors, is cleaned at least once every day, every counter, shelf, cabinet and the bathroom. Some of those things are cleaned twice a day. Now I do have to admit her apartment is spotless, but twice a day?

If you do not read the DSP notes, I encourage you to do it everyonce in awhile. Whether your child lives at home or not it can give you a real glimpse into things going on while your not there.

Tuesday, March 22, 2011


I bumped into a mother working with her child on pronouns. Her child was relatively young. Making those distinctions between he and she and we is so difficult. This was true for my daughter as well.

I have heard other mother's of children with Autism make the same observation. Pronouns were so hard. The speech therapist helped me work on it on and off for years. I can't say that there was any magical way to teach her. Maybe in hindsight it was a matter of when she was ready.

I can remember at some point that the speech therapists and I did spend a period of time trying to identify the difference between boys and girls. She was aware they had different equipment but with clothes on the identification was much harder for her.

All I can say is that we practiced. We would be in a car somewhere (with the windows up) and it would be a little game. I'd ask is that a boy or a girl? If she got it right I would cheer. If she got it wrong I would say no and the correct answer. It was never pressured though.

It was not too long after that, like 2 or 3 months, that I started noticing that the he/she and him/her combinations got better. 'We' and 'us' just took a long period of reminders to use the correct words. She still does not use the word 'we' often. Do ya'll have problems with pronouns?

Sunday, March 20, 2011


I know how important it is to write every day or two. It's just really hard to do with a full time job. I'm also still closely involved with both of my daughters and their services. Excuses.

I really need to do a better job of keeping up with you guys though. It keeps me straight and hopefully is helpful in some small way to you. I'm going to pledge to write every other day for a year. Ya'll feel free to comment and email me when I don't. Okay?