Monday, May 23, 2011

Aspergers Services

As I am sure you know many times it is harder to get services for someone who has Aspergers. They can function so high that they do not qualify for the more comprehensive services that a person with an Autism Spectrum Disorger should get.

We were able to get what in our state is called Mental Health Rehabilitation Services (MHRS) for my daughter who has Aspergers. One of the continuing conversations I have with my daughter's caseworker and counselor is whether DD is taking her medication.

They do not seem overly worried about it. Although I understand completely that they can not make her take her medicine I still think they should know when she is not. I also think there should be more that just asking her if she takes it.

A discussion behind the reasons a child with Aspergers or any other disability refuses to take their medication could give everyone involved some useful information.

Insight into her reasoning might give us some understanding of 'immature' though processes. It also can give us a greater understanding of her understanding of her medication. If her understanding is incorrect in some way that might be a huge part of the problem.

Those same discussions can be used to teach her strategies about remembering to take the medication at different times of the day. Medication discussions can also be centered around the best times of day to take certain types of medication.

Some medication does not work when mixed with certain foods. Other medication might work better after meals or at the beginning or ending of the day. Information about side effects and what might help with those would be useful. All things that someone should know about their medicine.

I just see the area of medication management with a child with Aspergers as so much more than it is. I also do not see her as being able to initiate this type of discussion. Am I being unreasonable?

Saturday, May 21, 2011


We went to the evaluation in the school system for my granddaughter. I suppose the good news is that they did the ADOS and do not believe she qualifies under Autism. I was not present for that part. She will qualify under Speech only at this time.

My daughter in law did not realize how far DGD was behind though. I kept trying to lead to it without being too in her face about it. She kind of fell apart after the evaluation. She finally told my son how much trouble she was having.

At some point she had been falling apart after seeing the Educational Diagnostician or Speech Therapist in EarlySteps. Then she would get it together and figure out how to present it to my son in the best possible light.

It finally got to her with the school system evaluation though. I have not mentioned to either one of them that although the school system evaluation may not show Autism and medical evaluation might. I do not know.

Thursday, May 19, 2011

Grandchildren and Disability: The Battle

I have 5 children but I also have 3 granddaughters. I love them all very much. It is always heartbreaking to have a child with a disabilty, any disabilty, Autism. It is even more heartbreaking to come to the realization that something is going on with a grandchild.

I had noticed between one and two my last grand daughter dis not speak alot. As that year went on I became more and more concerned and mentioned it to my daughter in law and my oldest son. I was told many times she was just a little slow.

Eventually I realized at about two that this was not going to be an accepatable answer to me anymore. Because the response I had gotten from my son was pretty harsh, I started to talk to my daughter in law about it first.

Well, I have to admit, I started to lean on her pretty hard about calling what in our state is called EarlySteps. It is the early intervention program for our state. My son kept saying no and I kept insisting.

Finally I had to have a discussion with him that he had a mother who worked in the disability system and two sister's with disabilities. I feel bad because I told him I could not believe that he did not want her to get help.

We have finished the first year of EarlySteps. My granddaughter's speech has grown by leaps and bounds. We are in the midst of evalutation for services from our school system. Here I am fighting the same battle with my son though...

Do any of you have older, typical children? Grandchildren? Do you have similar problems?

Tuesday, May 17, 2011

Finances and Independent Living Skills

My second daughter has Aspergers. She understands more than the first daughter who has full fledged Autism. Unfortunately because she understands alot she can get into more trouble. It is a mixture of good and bad.

I want her to be able to do as much as she wants to do. Even with Aspergers, I want her to be able to handle all of her business. It is definitely easier on me. That said, I can see how her difficulty understanding social cues is making things difficult for her.

Case in point, she decided she wanted to get her check in her own name. She got one of the people she lives with to give her a ride to do it. Two months later she is calling me crying because SSI took the amount of her rent and utilities OFF of her check.

I spent some time telling her that she must have said something wrong in the interview. Of course she got mad and hung up on me several times. Why would I know what I was talking about? Finances are probably one of the hardest Independent Living Skills to teach any child, let alone one with Aspergers.

Now that might be some typical teenage behavior. She is the fourth of five children and she is 18 so I have seen typical teenage/young adult behavior before. Conversely the two oldest boys knew when they needed help.

Once she calmed down we had several on and off discussions about money and SSI. Aspergers is one of the reasons she gets SSI. It just worries me that everything I have put together for her will unravel.

After all if she could do everything she would not need SSI. What do you think? Does your child get SSI?

Sunday, May 15, 2011

My Child with Autism Played Her DSP

I'm vastly amused. People think my first daughter with Autism is not very smart. They think she does not understand. They think she is not paying attention. They are so wrong.

She has skills I did not even realize she had. DD#1 wanted a coke. She told her Direct Service Person (DSP). When they got to the counter she told the DSP she did not have any money. The DSP told her she should have gotten some money today.

My daugher said she had the money at home. The DSP told her she would pay and DD could pay her back at home. When they got home DD did not have any money. The DSP was upset.

About this time DD called me and was fussing because the DSP was sitting on the couch not really speaking to her. I got the story in bits and pieces. Of course I fussed at my daughter too.

But after thinking about it for awhile, I wonder where did she see and hear someone do that. It was not me. DD#1 has been in her own apartment a little over a year now. She is with the DSPs a majority of the day.

DD also probably had to see that done more than once to remember it and be able to copy it. Like I said I am vastly amused. Right or wrong, DD has skills I did not know about. I wonder if this is what professionals mean when they say 'independent living skills'.

Does your child with Autism surprise you with skills? Are they listening even when people think they are not or cannot?

Friday, May 13, 2011

Sibling's Memory of Autism

It's funny what your children remember. I had two older boys before I had the two daughters with autism. I also have another boy after the two girls. One of the olders boys, his daughter, and his girlfriend were in for a couple nights.

They live about 2 hours away and do not get to see the daughter with full blown Autism very much. Well, they don't get to see either one very much. It's just surprising what DS#2 remembers.

DD#1 has echolalia or verbal tics. She also have appropriate speech on some level. It's one of those symptoms of Autism you hear so much about.

It is just sometimes the verbal tics are worse than other times. There are different triggers. The tics can depend on medication, environment, and a whole bunch of other things. But these repetitive phrases is what DS#2 remembers.

He talked about being able to hear his sister in the early hours of the morning saying "Here kitty, kitty. Here kitty, kitty." I had forgotten about that one. The latest one is "Bar-b-que, Bar-b-que."

Does your child have echolalia or verbal tics? What do your older children remember?

Wednesday, May 11, 2011

Autism Behavior: Scheduling

I was talking with a friend the other day. She has a child with Autism too, a younger child. She was frustrated because the child was having so many tantrums. He was losing it for what seemed like every day things.

After a few minutes I remembered things from when my daughters were much younger. With the magical power of hindsight I understand so much more now. At least on some days.

Anyway what I remember looking back it that my child tantrumed when there seemed to be no real reason to be upset. At some point I came to realize that those typical life events, like brushing your teeth, felt dangerous to the girls.

It was like they were being physically slammed by life events. For what ever reason, probably effects of the Autism, they could not anticipate brushing their teeth or hair every morning.

In a nutshell, my daughters with Autism could not feel the rythym of life. So having to eat breakfast or put on shoes stimulated their fear response. The solution on alot of days was simple.

We had a visual schedule. One that the girls could physically interact with. That way in addition to being able to see what was supposed to happen next. They could feel finishing that small section of the schedule in their muscles and bones.

Does this sound familiar to anyone else? Does your child with Autism have unreasonable tantrums? The angry, protecting myself tantrums? Let me know what you think.

Monday, May 9, 2011

Behavior and Energy Drinks

The provider believs part of the problems we have been having with one of my daughter's behavior in the evening is Energy Drinks. It seems my daughter has been drinking one every afternoon for awhile now. The provider thinks it does not mix with her medicine. What do ya'll think?

Saturday, May 7, 2011


I get busy with life and forget to write. I love to write I just forget. I did do 9 posts in April. I had only done 5 in March. I want to do 15 a month. Here I go again. :)