Thursday, June 30, 2011

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?

Friday, June 24, 2011

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.

Thursday, June 16, 2011

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... :)

Tuesday, June 14, 2011

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.

Sunday, June 12, 2011

The Youngest Teenager and His Sister with Aspergers

My youngest son surprised me last night. He is the last one at home. The sister right above him has Aspergers. They are only 16 months apart. When you add the fact he is the youngest, she has Aspergers, and they are so close together, it was pretty rough at times.

For years he believed his sisters were cheating because they got help at school. At times I have accessed counseling for the girls. I was blessed with a counselor that believed the family should work as a unit. Therefore she might work with any combination of the girls, my self, and my sons.

She helped me get the youngest son to the point he understood his oldest sister with Autism needed the help. She got him to understand that her world was small compared to his, even though my son was only 8 years old then. It never worked with the sister with Aspergers.

He just did not believe it. Still does not here at 16 years old. He came home from his part-time job last night fussing about one of the workers who did not do all of his job. Then, this is the surprising part, he said that he could cut him some slack because this other boy was sor of like the sister with Aspergers.

I never said a word. I will eventually but he was already upset than more than one of his co-workers were not pulling their weight. It just was not the time. I am just so excited this was a definite change in attitude.

Friday, June 10, 2011

Electricity Outage update

God Bless my daughter's support system. One of the people called the television about the electricity. Another person called the city councilman. Today we all got calls that the electricity would not go off.

Of course being my suspicious self, I will still bring my daughter home for the night. Just in case...

It is not that we do not want the Electric company to update their system. There just needs to be a plan in place for what the people who have no family or friends can do. I did a little investigating there are eight floors with 30 units on each floor. That's just alot of people who need a plan.

Thursday, June 9, 2011

My Life As An Advocate

I feel the constant pull of being a parent with a child with Autism and being an advocate for people with disabilities. Today is a case in point. The electric company is turning off the electricity at my daughter's appartment complex. It will be off from 4AM to 1PM. She lives on the 6th floor and will have no air or elevator.

I had already confirmed it with the electric company before I called the provider. The electic company is upgrading their system. I called the provider and made plans to get my daughter the night before. I will bring her to my house to spend the night.

In the course of my discussion with the provider they reminded me of all the people who lived in the upper floors of the apartment who used wheelchairs or are elderly. Not all of those people have family to go to. Myself and a friend have been calling various people about it but everyone says it is not their responsibility.

I suppose I need to call the news station but all of this takes so much time and energy. It's not my responsibility. But this is what you find yourself doing when you have a child with Autism or any disability. You become an advocate and do all kinds of things you never thought you would do.

Friday, June 3, 2011

Employment for People with Autism

Although I attended a very interesting 2 day workshop on employment for people with Autism and different disabilities, I was disappointed.

I wish I could find someone who could tell me how to make it work better. What I did understand was there were alot of states trying to figure this out.

The up side was I did learn the term 'situational assessment'. I have asked for one of those for my daughter. Autism did not keep her from having a little job once before. I'm not giving up.

The situational assessment is something the Vocational Rehabilation Agency should do. We'll see.

Wednesday, June 1, 2011

Autism Services and Independence

I have been having an interesting discussion about the Supported Independent Living (SIL) services for my daughter. It's one of the services available for people with Autism and other developmental disabilities.

During a discussion about the small change (nickels and dimes)her grandmother gave her the provider told me some interesting things. The supervisor said they had to count every dime. More importantly she told me it was part of the program.

I told her at the time I would check. Since the program is part of the NOW waiver in my state. I called the local office to ask them. They told me it might be for her safety and the safety of the provider company.

Eventually after I made it clear that I wanted to see those rules in that part of the program the local office said they would talk to the provider.

Eventually the NOW office called me back to tell me that it was part of the provider's rules. The NOW office told me that it was because she had staff in her house with her. I understand.

Really I do. But how intrusive. At some part I asked the person at the NOW office who counted her change. No one counts my change. And I do understand, but...