Remembering

I overheard a young mother, who has been an trained advocate for a while, ask another mom if there was a name for what her child had. It brought back memories of wondering if there was a name for what my child had. I didn't know anything back then. Let alone what Autism was.

This post was stimulated from one of the blogs, Achieving Extraordinary Success, I read and enjoy. You can see it here. Hopefully the link works...

Hello,
Hmmm. I'm definitely one of the parents that continue to blog about the sorrows and more importantly the joys of raising two children with Autism. I guess the reason I do it is because I don't find alot of parents with adult children on the spectrum continue to blog. I also have typical children. One of the things I have learned is that parenting isn't over once any of my children has become adults.

It has changed dramatically. I have become more of a consultant than a teacher at this point in all of my children's lives, well except maybe the last one. (Almost though, he’s 17 years old.) All of them, except the youngest, live on their own. This includes the ones with ASD. Given that I still am involved in their lives, I still have something to blog about.

I baby sit my grandchildren. I still manage the extensive services one of them receives. I try to keep the 18 year old focused. I’m still raising the last one, sort of. I’m kind of busy for a hobby. Oh yes, I also work as a disability advocate for a living and am on at least one group working on Employment for people with developmental disabilities, like Autism and Aspergers.

So maybe you can answer a question for me. I read several blogs by adults with Autism Spectrum Disorders. At least a couple if not more of them are really antagonistic towards their parents. I’m at a loss to figure out why. We did this before our children are able. We do this when some of our children are not able to do it.

Please, really, explain. I definitely would not be doing this to hurt my daughters. And please don’t lock me off your blog, I really learn from it.
Thank you!

2nd time post

Sorry if you got this post twice. My link didn't work. God Bless the people who point those things out to me. I'm not very good at computer stuff. Thanks!

Relationships Good or Bad

Does anyone else have a son or daughter with Autism Spectrum Disorders that is in a relationship with someone? How does that work? I don't want my daughters to be sad and they both are in a relationship.

The oldest one has Autism and when she doesn't have a boyfriend, she's sort of sad. The second one lives with her boyfriend and it is decidedly different. I'm just wondering how this works for other people with Autism or Aspergers...

Something happens when I take the daughter with Aspergers to the doctor. I take her because even though she lives on her own no one else will take her. Well and because she's my daughter of course. I want her to get the best medical care we can get.

Anyway the daughter with Aspergers is very verbal. She can narrate things that happen in great detail. She is also very good at answering certain questions. Unfortunately when we go to the doctor he tends to word the questions in such a way she can not answer.

Yes, the words are more complicated, but it is more than that. The doctor's questions are too general. He might ask 'How are things?'. She would say 'Just fine.' I know he wants to know more than that and might prompt her about trouble sleeping.

Then the doctor might talk about the difference between falling asleep and staying asleep. He might pause then and wait for a repsonse. She looks at me and I tell her that he wants to know which is the problem falling asleep or staying asleep.

She can answer that question. It has to be worded pretty specifically and said verbally. She won't just volunteer the information. This is just one instance. It has happened in many different situations. I think it is part of her Aspergers.

I suppose what I'm wondering is if anyone else has noticed this with their child with Aspergers or Autism. It seems to be something about the way they communicate. Both of my daughters do it.

It is just so much more confusing with the daughter with Aspergers because she is so verbal and does answer the correctly worded question so well.

Getting That Diagnosis Good or Bad

I like to read other people's blogs. I really like them, especially ones about Autism and Aspergers. It was with great relief that I read a blog by 'thoughty autie'. The specific post is here

You see, I have this worry at times. Basically I wonder, particularly with the child with Aspergers, if I should have ignored it. Or maybe hid it. I was determined to find out what was going on.

If anyone knew what to do to help her, and her sister, I wanted to find out. But sometimes I wonder that if maybe I hid it, maybe, just maybe, she would have been able to fit in better. I also wonder if at some point in time one or both of the girls will hate me for being so insistent.

Then I read the post above. She talks of the struggle she had when she was younger. The struggle of trying to conform to what other people thought she should do or be. Now with her diagnosis she can be herself. That's what I want for my daughters with Autism. To be happy and be themselves.

I recently did a workshop about special education issues. I got to talk about my daughter with Aspergers. At different points in a variety of my workshops I talk about several of my children.

Some how at one point during the workshop we started talking about how hard it is to get a child with Aspergers to be organized. My child in particular did not like people touching her stuff. She still does not.

We were talking about the fact we know homework gets done. We supervise it being done. We know it gets into the booksack and our child still gets a zero. I shared one of my strategies.

Since my daughter did not like anyone touching her stuff, including the booksack. I worked with the school system to put a goal on her IEP about organizational skills. Once a week a teacher would sit with her to go through the booksack.

In elementary school the daughter with Aspergers would sit on the floor by the teacher's desk and go through it. That gave my daughter the opportunity to talk about what each paper was. My daughter loves to talk. Does your child with Aspergers love to talk?

Anyway, when they came across homework or an assignment that had been completed, the teacher helped my daughter make sure it got to the right teacher. If the homework or assignment was not completed the teacher 'saved' the paper.

The saved papers were given to my daughter one by one over the next week to finish. They also had a trash can right there to get rid of the papers they decided were trash. What was left went back into the booksack.

Wonderful strategy for us. It was an organizational skill on the IEP so no one was upset. I did not have to argue with teachers about the fact that she should learn to turn in her papers. Completed work got where it was supposed to go.

More importantly no one upset my daughter by touching her stuff. I do not know if she learned to organize this way because of the practice. Maybe with the Aspergers she was going to learn to organize on her own. But she is really good at it now.

Being the Person Responsible

A friend told me about helping his brother. His brother had gotten SSI many many years ago. At some point the brother got a job and eventually lost the SSI. My friend talked about how rewarding and validating it had been for his brother.

Well in this down economy the brother lost his job. My friend has his brother living with him while they try to re-establish SSI or find another job. I remarked that I did not know if any of my children would do that.

My friend looked at me and in all ernestness told me, "Not as long as you're in the way." In a spit second I went from shocked to laughing. You know he is probably right.

Employment First

I went to the meeting about our state's Office for Citizens with Developmental Disabilities Employment First Initiative. I was there as a parent of a child with Autism. We spent the entire day coming up with major goals to move our system in that direction. We even had time to flesh out the goals with steps.

Different comments amused me during the day. One of the comments was that employment should be one of the first things that everyone looks at. One guy said, "After all I was never given the option of getting a job or not."

Now before everyone gets upset, it is true isn't it? Yes I know that there are issues to work through like how to plan for losing part of their SSI checks and making sure people do not lose their medicaid eligibilty.

After all if you lose medicaid eligibility your child may lose waiver services if your child has them. But their are ways to plan for these issues.

I have said it for years. A job, any job, no matter how small gives someone something to build their life around. It gives them something to think about and a boost to their self esteem.

I definitely want both daughters with Autism, well and anyone with any disability to be able to experience those things. Who know it could help with their behavior in alot of ways. I know people that it has helped.

Sometimes the hardest lessons for a child with Aspergers to learn are the ones best taught by letting her feel it. If she does not feel it in her bones she just does not seem to remember it.

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.