Wrinkles in Our Lives

I was having a discussion the other day with my oldest son. He remarked something about Autism being so traumatic for our family. It surprised me and made me think if it was worse for him as the oldest child. I mean worse than it was for me as the parent.

Well later I called him to talk about it. Of course his first remark was that I didn't remember. You know how it is if you have childre above say pre-teen. You're don't know anything or you forgot. It gets better when your children hit their twenties but... Anyway I digress.

My oldest is a son and he is 29 years old and I forgot. It took awhile to get to it but I finally got it through to him that every child is traumatic in some way and at some time. I see all of those things as wrinkles that change our lives. Sometimes change our lives dramatically but all children have wrinkles.

Once he understood that we agreed on what the diagnosis of Autism was like in our lives. I got the impression he thought it was the turning point in our life. He had the idea I didn't think it was important.

Autism Services: What Parents Need to Know About the History

It is only in recent history that there has been such a thing as Autism Services or any services for people with disabilities. Understanding the history is important for parents to know how far services have come. It also keeps them from getting discouraged when Autism Services seem to go so slow.

In the distant past a baby or a young child with a disability was left by the side of the road. Many children died. The lucky ones were picked up by couples who could not have children Other children were picked up to be slaves or workers.

Some families kept their loved ones in cellars or attics. They also used cages. As bad as this sounds many times these families loved the person. It was necessary to use these measures so people could work.

Some where in the early 1900’s people started to realize people with disabilities could learn and do things. At that point schools still did not accept children with disabilities. You might find people with disabilities working with parents in the kitchens or fields. Sometimes they were still kept locked up.

In roughly the 1960’s parents started to organize schools in the attics or cellars. Because it was considered a statement on the family’s genetics many families still kept their children at home.

Some parents had organized advocacy organizations like the ARC’s. They went door to door and literally begged people to tell them about the family members that were essentially hidden.

Armed with some hard numbers these early parent advocates went to the federal legislature for our children. They convinced legislators that our children could learn and deserved to learn. This led to the early laws that insisted children with disabilities be included in schools.

At about the same time those same parents were advocating for other services for our children. This was the period we saw large institutions built for our children. Many parents were told that their entire family would be damaged by keeping a child with a disability at home.

Institutions were state of the art services at that time though. We owe a serious debt of gratitude for these parents. As with everything the culture and the beliefs of parents changed.

Many parents wondered why their child could not receive some if not most of these same services at home. Parents in general believed they could pay rent, utilities, and raise their children. They just needed a little help. This has led to the services many families receive for their child with Autism or other disabilities in their home.

Uncomfortable Autism

Many times therapies and education for a child with Autism seem to be aimed at making them more “normal”-what ever normal is. I guess it had never occurred to me before. After talking to other families with a member with Autism I became aware of this.

The current topic at our house is my 21 year old daughter’s desire to get her own apartment. I suspect, no wait I know, the reason is to have ‘alone’ time with her boyfriend.

This seems on the surface to be more than typical for anyone who is 21. What is strange is my part in thins. I am essentially having to advocate for them. I’m her mother. Although myself and all five of my children are pretty open and plain in our discussions, I have never had to be this involved.

It feels strange. I asked the provider we work with about the people they serve. They mentioned that the only once which are intimate is a married couple. So that brings up another thought. Does that mean most people with disabilities are not intimate???? WHY???

Hmmmmm. Uncomfortable again.

Related Posts:

Autism Social Skills: Finding a Spouse

Parenting a Child with Autism

I am greatly amused and delighted to read other parents blogs about their child with Autism. One of the blogs I found is so great. The parent of a boy with and a boy without Autism writes it. Not all of his posts are about his children. He writes of other topics too. Thank goodness. At times people think all we parents think about it Autism. It’s not.

The latest article (or at least the latest one I have gotten to read) was about being the parent of a child with Autism. It was wonderful. Like this parent I am a parent first. Two of my children just happen to be on the Autism Spectrum, but I am a parent. I am posting the link:
http://blog.gbrettmiller.com/parenting-is-parenting/

I hope you enjoy it. Let me know what you think!

Autism Parent

I was called an Autism Parent the other day. I had never heard that term before. I mean I have heard Autistic Child but never Autism Parent. The first thing that went through my mind was ‘What about people first language?’

In case you don’t know People First Language is the concept that you talk about the person first and then the disability. Like you should say ‘…child with Autism.’ It is considered polite. After all you would not say the eye glasses lady would you?

Anyway that brought to mind a whole conversation I had about our Autistic Cat. One of my friends said ‘You mean your cat with Autism?’ Of course my smart response was ‘Do animals have the right to expect animal first language? I don’t think so.’

After the Autism Parent description I might have to rethink the whole Autistic Cat business though.

Aspergers, Engineers, Cheating, and Lying

I read an article the other day about cheating. It proposed that engineers cheat less because that profession is more likely to have a person with Aspergers. The article also proposed that engineers cheat less because people with Aspergers lie less. Supposedly this is because people with Aspergers have a harder time lying.

I have a couple thoughts about this. Well questions really. Does that mean people in other careers that have more people with Aspergers are also less likely to cheat and lie? Does engineering really have anything to do with this?

And do you agree that people with Aspergers are less likely to lie at all? I tend to think they may not be as good at it. I am not so sure that means they are less likely to lie but are more likely to get caught. As a matter of fact I am pretty sure about that since I live with a teenager with Aspergers.

What do you think?

Differences in Dealing with High Functioning Autism

There are several important differences to dealing with high functioning Autism in children. The differences are because children with this type of Autism are very intelligent and fast.

They know about the differences in the world and are not happy about it. They many times know if a situation is fair or not. Unfortunately they also will deal with their frustration on another level.

This is what leads to what some parents call difficult behaviors. It is important to remember that difficult behaviors are a form of communication.

As quickly as a parent can develop effective techniques and consequences for this child, they figure out a different way to get what they want. This means the average parent must constantly be on the look out for new strategies.

This is done by lots of reading, experimenting with your child, and networking with other parents. The alert parent will always be on the look out for the next obsession to use as a reward. They will know which item is their child’s favorite to calm them down.

A child with high functioning Autism will bring out every creative streak or dribble in a parent. Although this might not seem attractive now, this child will make you stronger as time goes on.

Many people do not realize or believe what a joy a child with Autism can be to raise. The child can be loving and a delight to have a discussion with. The child can bring a whole different climate to a family. Siblings are more kind and sensitive human beings. Everyday people do not realize the talent necessary to raise a child with autism either.

We went to the school for the 17 year old to drop out. Going to try adult education and social security. I'm not happy but not sure what else to do.... Aspergers is so difficult in such a different way than Autism. Yes I know they are part of a spectrum and all that. The problems are just so different. And the decisions that need to be made so much more difficult. It's not black and white the way it was with my older daughter...
Just venting today....

Social Skills

My 17 year old with Aspergers is a wonderful child. When I feel bad she shelps me. She is kind and caring.

She melted down at the movies. She had spend one night at the friend's house by herself. They wanted to go to a movie. Well the friend had a friend come over.

I knew it was trouble. Whenever there are three of them she seems to have trouble. It doesn't matter whether it is her friend or her friend's friend. What was I going to do though?

If I insisted she stay home, it would be another fight. And of course I am the meany. Not that I care about having to be the one to put on the breaks, but she has to see herself sometimes.

So there I was at midnight, going to get her.

Staying Together

I noticed a news piece about Ari Ne'eman's nomination being held up. President Obama had sent his name for the National Council on Disability. People are upset that Mr. Ne'eman seems to be more interested in services.

On the flip side he is not as interested in a cure. As far as I understand he thinks the genetic research in some way is working towards something like the amniocentesis for people with Down Syndrome.

Although I tend to agree more with him on the view that we need more services, I do agree with him over his other views as well. What I am concerned about is the hold on his nomination.

This seems more of the divide and conquer tactics that have been used against people with disabilities for year. If we fight among ourselves then we do not work on all of our issues. That disturbs me more than anything....

Autism Communication: Why Do Parents Need Non-Verbal Communication

Parents of children with Autism learn to read their non-verbal child’s communication early on. As a matter of fact all parents learn to read their child’s non-verbal communication. I would even go so far as to say people in general learn how to do it.

So learning to read non-verbal communication is not hard or unusual. What is unusual is when that is the primary form of communication and it goes on for a long period of time.

It is essential at some point that we remember to keep pairing verbal and non-verbal communication. This will help stimulate speech in our child if it is ever going to happen on any level.

Non-verbal communication is needed because we use it all the time. It also lets us know when something is wrong. This is particularly true when a typical person does not want us to know.

It gives our children the opportunity to make choices. After all making choices is critical to proving to other people that our child does understand even if they do no speak with their voice.

Many people believe our non-verbal child is not communicating with people, but they really are communicating. It is just different. Some parents of children with Autism have taught their child to sign or to use an alternative communication device.

In the past parents were worried that a child who signed or used a communication device would depend on it and not speak. Over time it has been recognized that if our children are going to speak with their voice it will happen anyway. Speaking even seems to be stimulated by the signing or the device.

Autism Inclusion: Why Do Parents Need Community People?

I have a friend that thought that Autism Inclusion was only about school. This was surprising since our children actually spend such little time in school compared to the length of their days and lives. Inclusion should be about friends, neighbors, co-workers, church members, and even employers.

Since human life is finite, our lives as parents are also finite. Meaning that we in all probability we will be gone before our children. I have told people for years that I have been preparing for my death for many years now. Do not get me wrong I do not plan to die for many more years. But I have been planning.

All of the people in my community are parts of that plan. Even my grandchildren are part of those plans. The people in my community will be the ones who know when our children with disabilities need help. They will be the ones to notice is something is wrong.

That is why it is important for our children to be included in the community. They need to go shopping at the stores you go to and pay the bills with you. Our children need to go to church with us and help clean the yard. This is inclusion in the real sense of the word.

Parents of children with Autism need people in the community for the same reason everyone else does. The people in the community need our children so they can remember things like tolerance and acceptance of difference. It is really a win/win situation for everyone.

Autism Medication: Why Do Parents Need Medication for Safety?

Medication is just a tool. It is neither good nor bad. It can help in a variety of ways. But it is just a tool. Many people have an aversion to medication and I understand. On the other hand there is a time and place for medication.

When a child with Autism tries to run at every opportunity it might be time to look at a variety of tools. When a child tries to physically damage themselves or other people it might be time to look at a variety of tools.

To me the critical point is safety. Safety is paramount. Some parents could not make it through the night if they did not have medication for their child to sleep. Who am I to judge?

If a parent seeks medical help to keep their child safe, they are being a good parent. It might be critical at their home for them to be able to sleep so they can be fresh to deal with the next day.

Of course as with any tool a parent wants to use medication with the proper medical care. They would also want to alert all the people who are involved with their child to possible side effects. Parents can keep track of the side effects for themselves and their doctor to continue care.