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.

Quitting School

So my child with Aspergers wants to only go to school when she wants to. And she thinks that should be ok. I just can not get her to understand that school doesn’t work that way.

I went ahead and made an appointment with Adult Learning. The might be able to get her a tutor. If we could just get her to the point she could get a GED. She likes animals. Maybe at some point she could get some training in that area. Some independent living skills along the way.

I just think she will do better around adults. She could mimic them a little! She seems to naturally gravitate toward younger people but if there aren’t any…

Autism Communication: Echolalia

This is probably one of the most interesting areas with a child with Autism. People who have children who do not have any speech might be envious of echolalia. On the other hand I know many parents who have children that drive them wild with the constant repetition. There are some techniques that reduce it.

My child did have echolalia about certain subjects. I thought the repetitive speech helped stimulate more speech. I have run into several parents who report the same experience. So echolalia might be good for some children with Autism.

One family I know found triggers. They then made sure not to talk about the things that triggered the repetitive speech. Unfortunately the family’s friends might trigger the child with Autism. This was helped some by warning friends ahead but never completely.

Of course parents who have a child with Autism know that sometimes echolalia starts without any seeming provocation what so ever. In this case sometimes different sensory techniques have helped reduce tension and stress. Even when it appears there was no reason for stress.

Finally other parents have found it beneficial to remove themselves from the situation. The repetitive speech did not bother their child. It was easier to just go another room or another part of the house at least temporarily.

Why Do you Need Strategies to Deal With Autism Behaviors

Many children with Autism have behaviors that there parents would like to change. The good news is that this is possible. It will take work but parents are not stuck with Autistic behaviors.

The first thing to do is to realize the purpose of behavior. Children with disabilities have behaviors to communicate. It is up to us to remember and help other people remember this first and foremost.

The behaviors may be communication about good things. They could be excited and happy and still have behaviors we would like to change. The behaviors could be communication about about things your child is unhappy about or upset about.

The second thing to do is to remember that as a parent you know so much already. Without even knowing it you have developed strategies that other people in your child’s life may not know.

One of the things I did when my child with Autism was very young was cover her eyes with my hand. Whenever she got upset and started to tantrum I would just cover her eyes. I know that sound a little strange but it would work.

I did not need to hold her down or grab her. As soon as she calmed down I could remove my hand. I am not even sure how I thought that might work. I guess not taking in so much visual stimulation for a few seconds let her adjust to what was going on.

The third thing to do is to keep a list. Since you have been and will be with your child longer than anyone else capturing your techniques is a must. It will be helpful to other people at different times.

The list will also be helpful to you. When you run into a tough problem you can look over the list of things that have worked in the past and reuse them. If that does not work parents may be able to recycle an idea in some way.

Budget Cuts

Well we are starting to feel the effects of the economy on our waiver services. This is part of what I call our Autism Services. Our state is doing something they call Resource Allocation. It is something having to do with level of services being tied to the complexity of their disability.

Anyway we lost 18 hours a week. I chose to lose half on Saturday and half on Sunday. This is the second weekend. Luckily I have not felt really bad with my fibromyalgia. I am not sure what I will do then. Dominoe really has to be watched.

Our Department of Health and Hospitals(DHH) also approved Dominoe's CPOC (Certified Plan of Care) for 90 days. They are usually approved for a year. DHH told the case manager we had to get a psychological within that time. That ought to be interesting. Her last psychological is easily 10 years old. As a matter of fact it is so old I can't remember.

Next Steps To Getting SSI

Well I guess if I am going to get SSI for Rose I need to do some things first. It has been awhile since she had an evaluation at school. I called last week for the second time. I got to speak to someone this time. They said they would send me the paperwork to sign.

I wanted to try to get what is called Mental Health Rehabilitation Services (MHRS). I tried to call and they told me no because one of her diagnoses is Aspergers. I need to investigate that.

I am still upset. I did not want to do this with this child. I am just putting one foot in front of another right now.

My Daughter With Aspergers...

I don’t very often write about this daughter. She is so different than the daughter with Autism She seems to understand and does understand a lot. She also doesn’t understand a lot.

We recently went to a doctor’s appointment. Rose turned 17 years old a couple of months ago. One of the questions I had for the doctor was about how we would be able to get and afford the medication she was on when we lost Medicaid.

I should say we have a really good doctor for my children. He has seen the last three more than the first two children and I trust him. We have gone to him for twelve or thirteen years now.

Anyway the answers to affording the medication were pretty good. Some of the medication could be gotten as generic for $4.00. (Has anyone not heard about this?)
Some were already inexpensive. Only one would be the problem and since the doctor had some kind of welcome at the local charity hospital we figured we might be able to use the drug program there. All good answers.

The I wanted to talk to the doctor with out Rose and he wanted to talk to me. Well the crux of the conversation was the same for both of us. Essentially—“And now what?”

What he said really hit me in the gut. He suggested we go apply for SSI. Oh my goodness. One of the therapists we saw when she was ten or eleven had said the same thing. I guess I never did it because I kept hoping I would not have to.

With my older daughter is was plain early I would need help. I just kept hoping with this one. I will post another time about what I have put in motion. I have just lost my breath over this.

Does anyone have a similar story? Please comment and let me know.

Autism Employment: Why Do People with Autism Need Rehbailitation Services?

Each state has an Office of Rehabilitation Services. In many states it starts with the name of the state and Rehabilitation Services. For example: YOUR STATE Rehabilitation Services or even Y.S.R.S. When parents are able to find this office and help their teenager get connected with it, they are able to start the process of qualifying for services.

Unlike with the school system, the teenager or young adult with Autism has to qualify and advocate with this office for services. There are typically a variety of possible services. Some of these may be testing for interest and skill areas, a variety of types of assistance to go to college or trade school, job developing, job coaching, job aides, following along, etc.

These services are a good place to start when looking at employment. Sometimes people with Autism who are more involved will need more services than the Rehabilitative Office can supply over the long haul but it is still a good start. Typically the Rehabilitative Office is also able to send you in the direction of longer employment supports.

At 18 year of age a person with Autism is considered a Competent Major and is responsible for making decisions for them selves. Unless you have used the legal system to continue to make decisions when your child is an adult, this agency will deal primarily with your child. Of course your child can choose to have you along for most of the process as support.

Employment on some level is possible for people with disabilities including Autism. Using the office of Rehabilitation Services gives your child access to a variety of tools designed to meet their needs. Testing can show the areas you child already has skills in. Various job related tools can help finding that first job.

Supports in college can include help advocating for a reduced course load while keeping financial assistance. It could be help scheduling classes in such a way to reduce the stress of classes requiring more effort. The Rehabilitation counselor can help your child find the Office of Disability on the campus and negotiate for accommodations in class as well.

Autism Behavior: Why Do You Need To Look For Hidden Meanings?

One of the interesting things about Autism is looking for the hidden meanings in our children’s behaviors. It is almost like being a detective. You have to look for clues in everything they do.

This is one of the activities that a parent will do that will help the most. Looking for the hidden meanings in behavior will calm our children and meet their needs. It really does not seem to matter whether your child is verbal or non-verbal.

Even with a child who is verbal you seem to have to figure it out. It is almost like having a teenager. For people who do not have a teenager, the parent can not ask them a direct question. Of course for teenagers it is for other reasons a direct question does not work.

For children with Autism they may not be able to answer you even if they have speech. On the other hand children with Autism are trying to communicate. They are trying to tell us things about their wants or needs. It is up to us to figure it out.

Parents also did this with their toddler’s. Parents did it naturally. Toddlers can not explain so we have to figure it out. Children with disabilities might use gestures or noises.

They may use behaviors, particularly behaviors that have gotten them what they wanted before. Sometimes children with Autism repeat behaviors they see others do. Again to get something they want or need.

Not all of the behaviors we are looking at are even problem behaviors. Next time your child with Autism has a puzzling behavior think back to when you have seen it before. Was it your child or someone else?

Think about the context of what was going on at the time. Also thing about what the result was in the past. Can you use that? You might recreate that or do some quick thinking to change the result.

Autism Inclusion: Why Do Children with Autism Need Supports to Succeed?

The easy answer to why children with Autism need supports to succeed is quite simple and also quite complex. In the beginning, it is really the parents who need the supports for the child. Towards the middle and the end the child, who is now an person with autism who needs them for a long term plan.

In the beginning for a variety of reasons we need supports to keep our children safe. They are so fearless and innocent that it can be exhausting keeping up with them. After around the toddler age they are usually big enough to hurt themselves or other. A little help is huge at this point.

Then of course it gets more complicated in the pre-teen and teen years. They are even bigger and could do more damage. More importantly they can get into trouble. They are curious and may be more likely to wander. What is scary is they can figure out how to get away in the blink of and eye.

In teenage years it is also nice for some adolescents with Autism to be able to go someplace without mom and dad. Supports allow that to happen while still providing an adult companion whether paid or not paid. It also allows us time to rest.

All of this is in preparation for later in life. Whether in our child’s twenties, thirties, or later we will want to make plans. Those plans depending on how independent our child turns out to be may include long term supports to be successful.

Sometimes adults with Autism need some support during the day and sometimes they need twenty-four hour supports. Of course figuring out how to pay for all of it will have to be saved for a later article.