Saturday, February 27, 2010

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.

Tuesday, February 23, 2010

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.

Sunday, February 21, 2010

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.

Friday, February 19, 2010

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.

Thursday, February 18, 2010

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.

Sunday, February 14, 2010

Autism Medication: For Co-occuring Disorders

Funny thing happened along the way to getting my child help for her Autism. Hang on to that thought.

My daughter was six years old and basically non-verbal. She did make sounds that sounded like gibberish, with an occasional word. She was also a very busy little person. The business was not a problem as I had two children before her. They were also a little on the busy side.

I knew as a parent of three children that my child with Autism was on the slow side. Even though she was six, I figured that the busyness of toddlerhood was lasting longer with her.

Sometime around six we found a really good doctor for both of the children with Autism Spectrum Disorders. The relationship was a good fit for our family. I did not have to spend a whole lot of time convincing him that there was some type of problem or another. He seemed to understand Autism. The doctor really paid attention to what I was saying.

One day while in for a regular visit he watched the daughter with Autism and suggested medication for ADHD. Although I was aware ADHD ran in our family, I had resisted medication in the past. Since this doctor had really worked to understand what was going on in our family, I was willing to try.

Low and behold I started noticing more words. Within about a month I noticed a lot of words. She still at twenty one has an odd turn to the way she uses language, but you do understand what words she it using.

At some point I asked the doctor about it. The explanation I got was the ADHD medication sped up certain parts of her brain so that executive functions could come out. One of those was clear speech. She probably had words for quite awhile. I don’t know. It sounds good to me. It works wonderful for her.

That is the funny thing that happened to me along the way of getting help for the Autism. I got help for the ADHD and the speech.

Related Post
Autism Communication: Why Do Parents Need to Stimulate Speech?

Friday, February 12, 2010

Autism Social Skills: Finding a Spouse

Did I mention my daughter has a boyfriend? She will tell you she ‘luvs’ him. I wonder about people with Autism and their ability to find a spouse. I know two couples that have a member with Autism.

In one of the couples the wife has Autism but both of them have disabilities. In the other couple the wife has Autism, but I only know them remotely.

The couple I have known for longer has been together for roughly 20 years. They seem to make it work. She could drive and would stay with her mother during the day while he went to work.

After her mother died she would go to older friend’s houses while he worked. At some point they moved in with her father. They never had children and somehow seemed to make it work. The husband must have had a learning disability but he seemed very understanding.

I know from watching my daughter that people with Autism have the need to connect. She is so much happier, even when she just gets to talk to the boyfriend.

I seem to be the one with the issues. I have been thinking about it on and off for several days now. I have older children so I have something to compare my feelings to, I suppose. Maybe parents always will have issues with their children’s choices for a companion. Her happiness is really all that matters to me at the end of the day.

Related link:
Uncomfortable Autism

Wednesday, February 10, 2010

Autism Communication: Why Do Parents Need to Stimulate Speech?

Autism is considered a communication disability by many professionals. It is also characterized by a variety of other characteristics. Professionals who focus on communication specifically are focused on speech. It is thought that children with Autism would not have as many different behaviors if they were more skilled at using speech.

So how can parents help? One of the ways they can help is to do their best to make their child use what speech they have. If they only can make a sound when they want a specific item then they need to make that sound. If they can say some words they need to say those words at the right time.

Speech therapists have sometimes found that it is easier to teach children with Autism how to sign. One of the fears of parents have been if their child learns to sign they will not speak. Thankfully this does not seem to happen. Children who are going to speak seem to do it anyway.

Just the same as speaking though, if your child knows some signs for words they need to use them. If they say the word so much the better but if they do not insist on the sign.

This is more difficult than it seems because many times parents already know what their child wants. It is easier and faster to just give it to them. We have to resist that urge and remember the long term goals for our child.

Related Post
Autism Medication: For Co-occurring Disorders

Monday, February 8, 2010

MY Child with Autism

Raising a child with Autism has at the same time been easy and so difficult. When you are in the process of raising your children you do not realize the creativity and energy that goes into it. Then multiply that times ten to raise the child with Autism.

I was dealing with a child slamming her head on the floor to the point I thought she would break her head. I did not even know what head banging was at that time!

Even though I had two children older than her I had to re-examine everything I thought about children. Then to have a child after that one with Aspergers… Supposedly part of the Autism Spectrum Disorders but so very different. The second daughter required a completely different set of skills.

Would I change it? No. All of my children had made me the woman I am today, including those with Autism.

Everything I have learned though I have learned about Autism I have learned the hard way. A situation has come up, I have had to ask people, go to professionals, or read books. Sometimes I have just had to literally ‘bump’ into someone that knew what to call whatever we were experiencing.

I was offered to send my child with full blown Autism to an institution. I knew in my gut that that was not the answer. I stormed out of that doctor’s office. Now I realize, God Bless him. He was the doctor that Social Security had sent us to for my child’s qualification. The doctor obviously was not offended by my anger.

We got her SSI in less than three month. In our state I had been warned many times we would have to appeal many times. Like I said God Bless the doctor who was not offended by my anger.

Ok, I am rambling for some reason in this post so I will close. I just felt moved to say this today.

Saturday, February 6, 2010

Intrinisc Rewards with Children with Autism

Children with Autism may respond to the same intrinsic rewards a typical child. My children all responded to rewards. At one time one single, solitary skittle was a reward every five minutes to behave in the car. A whole bag lasted for an entire car ride with three children.

Intrinsic rewards are typically rewards that do not have to be paid for. Physical rewards are rewards that are bought or have to be gotten in some way. Both rewards should be paired in preparation for the phasing out. You also need think about how expensive the physical rewards might become over time.

Because some children respond differently than others, sometimes parents also pair two or more intrinsic rewards with success for children with Autism. It really was not my imagination when I noticed that one or another of my children needed bigger rewards. Many professionals have come to agree with this observation as well.

The bigger rewards were in some way true for my daughter with Autism. This might have been because she responded differently, but that is what it took to work.

Thursday, February 4, 2010

Autism and Inclusion

Children with Autism and inclusion at school it sometimes a difficult topic for parents and educational professionals. Especially when looking at a child that is so vulnerable. It is a little scary.

If we want our children to be able to survive in the real world it is important to start early. Starting as early as preschool and elementary school is not unheard of for parents like me. It is never too late to start though.

Long term inclusion was and is a goal for our family. It is also a concept that many families with a member with Autism or another disability have.

If you want to start early there are a few things to keep in mind. First our children need to go to the neighborhood school with all of the neighborhood children. Second our children will learn to dress and speak like other children by being in the same places. Finally children, teenagers, and adults with Autism have the opportunity to develop the relationships and skills they will need later in life by experiencing it.