Friday, April 22, 2011

Aspergers Things That Surprise Me

I forget how resourceful my daughter with Aspergers is. She got in trouble in school when doing work because she would go from person to person to find the answer. She did not see that as cheating. Once she learned that rule about cheating, it was a black and white rule. Again typical of Aspergers.

Well she and I have been arguing about whether she can handle her finances or not. Even though I am concerned, she still surprises me. She wanted me to apply for food stamps for her although she wanted to be in control of her SSI check. I told her to figure out how to apply for it herself.

I also told her she would have to keep her food separate. Since she was living with other people I felt she needed to learn that rule. Once again I was trying to use that characteristic of people with Aspergers.

I admit I was more annoyed with her than anything and would have done it eventually. She kept asking people until someone helped her print the application and fill it out. She got a call for a phone interview and told me. We talked about what they might ask her.

That must have gone well. She got a ride from one of the people she lives with and brought the paperwork they told her to bring. She also already got the card in the mail. I’m happy to be surprised that she was able to do this.

I know many times people with Aspergers have trouble interacting with other people. One of the things I tried to teach and she learned on some level was to ask for help. Interacting with people does wear her out. When she’s done, she’s done till she can rest. I know that is part of the Aspergers. The asking for help was a learned Social Skill that is serving her well.

Wednesday, April 20, 2011

Autism Employment at a Fair Wage

I recently read a blog post from another country. It was on employment of people with disabilities. In that country the minimum wage was roughly $13.00. People with disabilities there are paid as little as $2.00.

They were talking about the fact that it was criminal that people with disabilities there were paid such a pittance. I agree. I am appalled when I look at the take home wage of people with disabilities in the United States.

Although our minimum wage is $7.25 the last time I checked, I know people with disabilities that are making 14 cents and 25 cents an hour. I know people with disabilities that shred papers, change trash cans, clean floors. I know other people with disabilities that do yard work, clean dining rooms, and roll silverware for restaurants.

They might get paid varying amounts, but not minimum wage. The small amounts paid in the United States is worse than other countries. In a society that is upset that work from this country is outsourced to other countries for small amounts you hardly hear about the small wage paid to people with Autism and other disabilities.

Monday, April 18, 2011

Autism Communication: Emotions and Non-verbal Communication Help with Behavior

Emotions and children with Autism is such a source of heart ache and confusion. We all wonder why our child loses control in line or while waiting or whenever. Over the years I have learned a few things about emotions and a child with Autism that have helped us. As close as I can tell, emotions help us make sense of the world.

For example, if we are good at doing something, like work or fixing things, we feel calm. Children with Autism stim with objects like the wheels of the car or lining up dolls because it makes them feel calm. Stimming is also like a nervous habit.

Twirling our hair or popping the plastic packing material from a box calms us. It works the same for children with Autism, they feel anxious so they stim to calm themselves. The only difference is that we are aware of the world and why we are doing what we do.

The world always seems to be changing and intruding for a child with Autism so they are more anxious. It helps to keep our faces calm and peaceful. Babies react if our face looks upset. They cry. It can work the same way for our children, but we have to tell them to look at our calm face.

They do not learn to do it automatically like babies. We have to tell them. It can help them feel less anxious. Getting my daughters to relax and be calm was also done by slowing down. I would slow down everything so my daughters would have time to notice and react.

I focused on one reaction at a time. For example, I would smile if everything was ok. Then I had to teach my daughter that a smile means it is ok. Next it might be shaking my head meant something was ok or it might even be the pitch of your voice that you could teach your child to react to.

One of my daughters did learn to read. We were able to match non-verbal communication or cues to text too. Just like anything else in life, if it does not work, stop it. Maybe go back later. Just spending time together is an important activity too. It teaches your child even when you do not do anything else.

You can do the non-verbal stuff with little games too. You might want to pass a toy around. The fun part is to pass the toy only when the next person smiled or whatever was the isolated non-verbal cue you want your child to notice. This also helped her to learn to wait. I could gradually increase the amount of time before I smiled. My daughter enjoyed learning to do the same.

One day I was cooking I had trouble getting the microwave to work. I am not sure why. My daughter started to get upset and tantrum. When she looked at me I had a blank look on my face and told her it was ok. She immediately calmed down.

Another time we were picking up medication. It was not ready. She started to cry. When I looked at her with a calm face and said it was ok, she relaxed. Years ago she would have had a serious tantrum over things like that.
Sometimes when all else failed and we had to wait somewhere, I let her verbally stim. In the scheme of things I prefer to play with her by verbally stimming than tantruming.

Saturday, April 16, 2011

Looking for a Cure for Autism

Oh my, I slipped right into it. I started reading about a promising program that many parents of children with Autism are using. I became obsessed. Then I went back to that program with the Dolphins.

I am also trying to figure out how to go to Europe to get trained in that first program. Plane tickets, a week's stay, the registration... I do not have that kind of money. Obsession.

Breathe! I had not done this in years. At some point in the oldest dauther's life I had decided it was about the quality of her life, not a cure. Do not get me wrong I did believe and look for a cure when she was young.

But at some point it became about whether she was happy and loved. It just surprised me how quickly I slipped back into looking for a cure.

Thursday, April 14, 2011

Parenting a Child with ASD

Did you get a book when you had a child? I didn't get the book with any of mine. There should be an instruction book that comes with a baby.

I sure did not get an instruction book with the child with Autism. If I had of it would not have done any good with the daughter with Aspergers. There should have been one with her too.

Even after 22 and 18 years I am not sure I could write and instruction book. I am still at the point I am telling our stories.

Tuesday, April 12, 2011

Service Personnel

It's a business arrangement. We can become very attached to providers, case managers, service coordinators, direct support personnel, personcal care attendants, etc. It is just important to remember that it is a business arrangement.

They are not our friends although we may all be friendly. They are not our child's/adult's with Autism friends either. Now that I think of it this is important to remember with teachers and educational professionals as well.

It' a business arrangement.

Sunday, April 10, 2011

Autism and Alzheimers

I have a friend, Mary Ann, whose mother is getting steadily worse. She has dementia or Alzheimers. Well this friend worked as a DSP for me during a time when I desperately needed the help.

Mary Ann tells me regularly how thankful she is that she worked with my daugher. It is helping her in this time with her own mother. One of the issues Mary Ann and I discuss is keeping your options open.

The rest of the family does not understand or maybe does not want to understand how badly their mother is doing. She's not sick but she does have all of the willful characteristics of Autism and Alzheimers. She wants to take off, wander, and argue.

The family, ie the Circle of Support, do not want to get on any of the waiting lists for in home care. They need to have some discussion around long term supports. I describe this to the families I interact with as 'not leaving their options open'.

If you do not get on the various lists for help you do not have the choice of using it when you need to when your loved one's name comes to the top. OR of saying we want to go back to the bottom of the list because we do not need the help now. OR even of saying we want and need this little bit of services but no more than that.

I have the same conversation with parents of young children with Autism. If you do not get on the list now. You are not keeping your options open!

Friday, April 8, 2011


Yes, I know I'm slacking again. I promised every other day. The words just take me by fits. Anyway I'm trying again.

Friday, April 1, 2011

Stages and Competencies in Children with Autism

Listening to parents in general talk about stages and competencies is interesting. The discussion is even more interesting when you have children with Autism. When you have a child with Autism, they don’t develop at an even level.

Typical children don’t develop at an even level either, but with a child with Autism the spread is so much bigger. Then when you add into it what peers might be doing it becomes even a larger spread. That's part of the reason why stages and competencies seem like strange terminology, to me at least.

What a lot of parents get to at some point is that it is ok to be at so many stages and competencies, just different. Sometimes it is a struggle for some of us parents (meaning me!) to get to that point where it was ok.

When my oldest daughter with Autism can tell I am upset, but cannot tie her own shoe I am not surprised any more. I gave up being frustrated or even worried about what other people thought about it too. What do ya'll think? Do you thing in terms of stages and competencies?