The thing that surprised me about having a child with a Autism or any other disability was that there wasn't a list or a menu of the things you might need. My goodness there wasn't even a list of the government programs that might help.

Sometimes you do not even know the right questions to ask. Having a list of programs for a child with Autism might have at least pointed me in the right directions. It's like everyone was afraid to have a list because then people might ask for that kind of help. And yes the costs would go up.

I know some wonderful parents of children with Autism have put together lists of possible therapies. The general public believes that there is a list or 'programs' to help parents of children with Autism. Yeah, and they all get a government check too--not.

I am excited about the Employment First Initiative in our state. I just got invited to sit on a workgroup with our state's Office for Citizens with Developmental Disabilities. Our state recently went to a system of waiver services that is based on levels of care.

At this point there is a tie between the level and the budget amount for services. One of my complaints was that the manual for these changes talked about day programs. I even at one point told one of the administrative people in the state that I was offended that employment wasn't at least mentioned in that box first.

I realize not everyone will work a 40 hour week in 5 days. I am not sure my daughter will be able to work more than 3 hours a day twice a week. We tried 4 hours a day for 5 days a week and she could not do it. The behaviors she has with Autism got unbearable.

But she deserves to have work to build her life around just like everyone else. It might look different for her but she deserves a chance. Like I said I am excited about the Employment First Initiative.

My youngest daughter got approved for SSI as an adult. She has Aspergers. I'm glad. I think.

I remember going to a regular doctor appointment. She was 17 1/2 years old. He sent her out of the room and asked me what we planned to do. In the conversation he told me to go apply for SSI for her. I remember telling him I did not want to.

I did it though. She qualified after about 4 months. She did not get a check for two months and only part of a check a couple months because I made too much money. A couple months after she turned 18 years Social Security started the process of deciding if she still qualified.

I was on pins and needles. I was not sure if this daughter would qualify. She can do so much more than my oldest daughter. The oldest one has Autism and all the behaviors that go with it.

I hear from the youngest daughter every day, several times a day. She qualified.
At least it gives her a base to live her life. I still hope and will work with her to get her to work someday. I'm just not sure how I feel about it.

When the economy is flush it seems to be so much easier for a person with Autism or any other disability to get a job. It is easier to carve out the parts that other people find boring or that other staff that do not do well.

Many times those are the tasks people with Autism do well and do cheerfully. But those jobs are the first to be cut or absorbed. There are also other ways people with Autism lose jobs. There are just wrinkles to this that bother me.

I talked to a friend who happens to have a disability. He talks about people with disabilities being out manuevered for jobs. He particularly was talking about people who had physical disabilities.

Their jobs are being absorbed because they do not move as fast. Goals that an able bodied person can do take them longer. At least that is what he says. It can be done but it takes longer.

I suppose what bothers me is that while I do not want to dilute a job to make it easier for someone that has Autism or another disability, there also needs to be a place where we let keep people in their job.

Ok, the more I think about it the pissier I get.

Getting To Be An Older Young Adult with Autism

I was thinking again about the oldest daughter, Autism, and the differences in her lately. Part of the changes I see in her are probably due to the growing up process. Although at 23 years old she is not growing up the way she did as a child, anyone with adult children knows they are still growing up.

I have two boys older than the girls and a boy younger than the girls. Right about this age the two older boys made some dramatic changes in the way they thought too. It just looked like a clearer process when they made a decision. Their thinking was so much more solid.

Alot of time I talk and think about Independent Living Skills and Autism Spectrum Disorders for my daughters. But we all need and use Independent Living Skills. I am so pleased at the way even with Autism the girls progress and go through the steps of owning their lives.

My oldest daughter came to spend the night because they were doing updates on the electricity at her apartment. The electric company was supposed to do it before but they did not.

Anyway there was a community dance we went to. I did not feel good but her boyfriend was going to be there. The boyfriend is older and has broke up with her several times. He tells her he is taking her back. Well, I'm not happy about that, but she is so satisfied with herself when it happens--what am I going to say?

At the dance she was so happy. That's another thing she is so happy when he is around. She laughs and giggles and dances. She also forgets to call me but again what am I going to say.

One evening when I called her she told me she had to get off the phone because she was waiting for him to call. I guess I got bumped. lol I paid for her cell phone bill so I can talk to her. How is that for Independent Living Skills? If she is too busy to talk to be I'll pay for the cell phone.

But she is just different when she has a relationship. She communicates differently. She is more outspoken. Usually when I ask her where she wants to go out to eat she just shrugs. Now she tells you what she wants...

How do ya'll handle relationships? Are your kids even old enough? Please let me know.

Book Review

Since I have two daughters with Autism Spectrum Disorders I have always been interested in the discussions of vaccines as a cause of Autism. Although I know there were ways to get exemptions I did not know a lot about it.

I was excited to be able to review the 2007 updates to the book ‘Your Personal Guide to Immunization Exemptions’ from Dorrance Publishing Company. This book is full of information on how to approach the hospital, the school system, child protective services, and a wide variety of other agencies and situations.

In each instance there are strategies and advice on how to get your needs and desires met. This is described with an eye towards keeping the situation non-confrontational and professional. There is advice on when to discuss and who to discuss the issues with and when to extricate yourself and go to the next person.

I found the book to be a very informative read, particularly on custody cases and children’s health rights. You can get the book at this link:


Although I was given a copy of this book by Dorrance Publishing Review Team in exchange for the review, I was never told or required to write a positive review. Visit dorrancebookstore.com to learn how you can become a member of the Book Review Team.

The Boyfriend Is Back

The boyfriend is back. I can't get her to understand that he is not the best choice. She deserves to be happy and she takes him back every time. I do need to get busy and check when is the last time she took the birth control shot.

Of course she can have a baby if she wants to I ask her all the time. I'm also glad she says no. Working on keeping her in regular classes and in everyday life helped her learn about babies. She will tell you they are loud. Those independent living skills come in handy!

I guess this post really has nothing to do with Autism and everything to do with being a young woman...with Autism.

Aspergers and Confabulation

She does not lie and she is not lazy.

I went to the psychiatrist for my second daughter's SSI. It brought up all that anger from all those people, usually teachers, over the years who used to tell me she lied or she was lazy.

I have watched this child with Aspergers and now adult with Aspergers. She works ten times harder than any of my children to produce less than half as much work. I have watched it. I flat refused to let teachers or anyone else say any of those things.

Lying is a deliberate decision to tell something that is not true. She believes what she says. The psychiatrist today said what she does is a 'confabulation'. She believes it but it is not real or not really what happened.

I need to remember that word. I asked if I would get a copy. The psychiatrist said he did not think so because the federal government 'owns' it. Hmm I wonder how I can work on that.

I really need to get better organized. DD needs to go downstairs at her apartment building to get her lunch. Someone from the apartment complex goes to get the lunches for the elderly and disabled. But she has to be down there by 10:00AM.

If she is not down there then she will miss it because the lunches go quick. I forgot yesterday. Even though the DSP is there if I do not remember it does not get done. I figure since not all the DSPs cook they need to go get the food. Besides the fact that if her stomach is full the behaviors are easier for her to control and the medication works better.

She does not eat with the other people though because they complain about the food. Then DD does not want to eat it. One of the autistic behaviors she has is mimicing the people around her. The food is perfectly good. Just like if someone cooked. Some days a little spicey or salty. Some days better than others.

I am just amazed that even though she is an adult, in her own apartment, with a DSP, I do the remembering. Does anyone else have this experience?

My oldest daughter recently had an appointment with Louisiana Rehabilitative Services (LRS). I met her and her DSP there. Mostly because I had sent them by themselves once before and it did not work right. But that is another issue.

Anyway the appointment brought it to my attention, again, how different my daughters are even though the both have Autism Spectrum Disorders, ASD. Part of the testing at LRS was cognitive.

The oldest daughter know alot but there are holes in what she knows. Or at least that is the best way I can describe it. She knows this but she does not know that. Then at some point you realize the holes get bigger and bigger.

The second daughter also knows alot, actually a whole lot. There are just cracks in what she knows. At first you do not realize it. There might be one little part she does not know.

It's not until you start to press her on what she knows till you realize how wide and deep those cracks go. She does not know what to do with what she knows. Like she might know HOW to wash her hair. She does not know how to make it work for her.

The other thing is she does not believe she has to even wash her hair. The soap and water hurt. It's sensory. I understand it bothers her that much. She just does not get that her hair is dirty, unhealthy, and or might bother other people.

That is part of the problem, people think she does not want to comply. Her lack of understanding is so much more complicated that that.

Speech Therapy Is So Much More

Just recently when my daughter's apartment was supposed to have a scheduled electricity outage to upgrade the system, she came to spend the night. The next day we were running around and I had to go to the office for a little while.

One the porch to the non-profit where I work there is a stand in one corner with a cement statue of an angel. My daughter saw it and started laughing. She said, "You better hide that statue, grandma's gonna steal it." I was definitely surprised and even got her to repeat it.

My mother collects angels but DD#1 probably has not seen her since Christmas. Even then we were not at grandma's house for the holiday. I supposed all those years of speech therapy paid off. We had to call grandma and tell her about the statue.

For years I tried to get the speech therapist to teach her to chit chat or to notice things and comment on them. Sometimes the therapists understood and sometimes they did not. Some years my daughter did better than others.

I suppose she learned to notice and comment more than I thought. Just as an aside I also worked with the speech therapists to get them to unders stand they were the beginning of reading for my daughter. The vast majority did understand. Other speech therapist thought I was out of my mind... :)

My daughter with Aspergers asked me if I missed her. Of course I do. She then told me she would come home to spend the night Friday night. Hmmm. I'll have to remember how that worked.

She thinks she is helping me. She is more willing to do what I want when she thinks she is helping me. I forget that she and the daughter with Autism sometimes feel what other people feel more than what they feel. That must be a talent. Other people do not seem to do that.