Systems That Don't Work Together For People with Autism

If you are a parent of an adult child with autism you realize a lot of the systems you work with don't mesh correctly. I think the correct terminology is 'link' or 'linkage', or at least that is the terminology I hear people use. In the last posts I have been talking about the things we have done to be able to get Dominoe another job. She has a job making $8.00 an hour doing janitorial work. This is basically cleaning the lunch room and bathrooms. That is the same work she did at Burger Kind and Taco Bell years ago. She has done very well but is ready to exit from the services at Louisiana Rehabilitation Services (LRS). Her waiver is supposed to be available for the extended follow along services. At LRS follow along is basically a supervisory type service that checks to see if things are going ok. It is also used to provide more training or do problem solving if there are issues. With the waiver the extended follow along seems to be more of a function of the job coach or at least that is what it appears to be. With the waiver there are 24 days of extended follow along a year. The code is the same code as would be used for the job coach. Although things are going well I would like to access the extended follow along through the waiver. I, maybe right or wrong, believe that the company would be more likely to keep Dominoe if there were re-occurring resources. You cannot get the job coach and the direct support person/DSP/aide. We have built Dominoe's services around her behavior. The easy solution is to have both people work for the agency that supplies the DSP and the agency that supplies the job services. Except that there are four to five staff that would have to be trained for 24 days a year. My question was then is the job coach/follow along going to tend to behavioral needs or physical needs? Of course the answer is no. At this point I'm stumped and in the process of going up the chain of command through the Department of Health and Hospitals to find out if this is true. I realize this is requires a very fine understanding of how both systems work. I also believe these differences is why most families with a child with a significant disability like autism just give up on employment. Does any one else have experience with this?

Situational Assessment

We were still working on employment. I asked Louisiana Rehabilitation Services (LRS) for a situational assessment. If you remember LRS is our state's agency that does rehabilitation services. After a discussion about the situational assessment we were given the list of the providers in the area who could do it. There were three of them. One of the providers was one we tried to work with in the past. They spoke to Dominoe, looked at her file, and told us all they could offer was the day habilitation. Day habilitation in our area means sheltered workshop. I know people tell me it doesn't. I was working in this field when the sheltered workshops became day habilitation. The providers changed the name. The paperwork changed. The program didn't. I'm reminded of the story...if it walks like a duck and quacks like a duck it might be a duck. It was still a sheltered workshop. Anyway one of the other providers that could do the situation assessment was a one person company. She rarely worked with new people. So by process of elimination we choose the other company. I was present for the situational assessment. With a child with Autism someone needs to be there, at least in the beginning, to be able to provide accurate information and to explain some of the idiosyncrasies of the person. The situational assessment with the provider took one hour. We met in my daughter’s apartment for an hour. No one was present but the DSP, me, Dominoe, and the employment provider. Dominoe did have some job experience to talk about. She had worked for Burger King and Taco Bell. I’m sure we were able to provide some specific information about work about what she could do and could not do. Maybe other families didn’t have that kind of information. But an hour? After the meeting I called friends and professionals again to ask questions. They again were surprised and a little shocked at what I described. I was told that a situational assessment usually was done in a work setting, more than one work setting. The employment provider did tell LRS they thought they could help her get a job. Again I was waiting to see how this was going to work out.

Employment a Difficult Activity For People with Autism

My oldest daughter, Dominoe, and I have been working on getting her a job. She has had a job before. Twice as a matter of fact. She lost it when the economy tanked. We tried to get another job. I called our local Louisiana Rehabilitative Services (LRS) and was counseled that they could not help her because she was ‘too disabled’. Of course they didn’t use those words but that is exactly what they meant. Since she has waiver services we went to the largest agency in the area for help. I was upset that they sent us a letter saying all they had to offer her was a ‘sheltered workshop’. We made it clear from the beginning that she was looking for competitive employment. I was so disappointed that a sheltered workshop was all they thought she could do. So we did nothing. In the next couple years I got involved with an initiative in our state called Employment First. I got to meet several people who offered me advice. Again we went to Louisiana Rehabilitative Services but this time I knew a little more. When they counselor there told me that Dominoe needed more supports than they could provide, I emailed one of the people I had met. She told me to say that I knew they had to do an evaluation anyway. I immediately did that. I also told the LRS counselor I was working with someone who knew the system and was willing to give me advice. At that point he immediately scheduled her for an evaluation with a psychiatrist. I was greatly surprised at the thoroughness of the evaluation. Unfortunately the evaluation said exactly what that agency had said years ago. It said she would be appropriate for the sheltered workshop. Although the Employment First meetings never have really produced much, I again I consulted the lady I had made friends with through the meetings. She told me to ask for a ‘situational assessment’. Although that process was not all that I believe that was the point where everyone decided that we would really be working through the process. So she was on her way to a job. Or so we thought.

Adult Children with ASD

Being the parent of an adult daughter with autism and an adult daughter with aspergers is very interesting. Dominoe turned 25 years old a few months ago. Rose will be 21 years old next month. At this point they are old enough for me to be able to look back and evaluate some of things I tried with them. It also brings a whole host of other issues that are not particularly within my control. This is particularly true with an adult child with Aspergers. Because she is so verbal people forget the difficulties she has until they are presented in an odd situation. The issues with an adult child that has a deeper disability are no less frustrating. From dealing with staff designed to keep her independent to the struggle trying to get her meaningful activities like employment, services are so complicated. At one point in time I blogged about my daughters in the hope other people could find some nugget of information to help them raise a child with ASD. I have gotten away from that. Several adults with disabilities have posted in other arenas about their anger at their parents. I have spent a lot of time thinking and reading about that. Ultimately this is my story too. The issues around small children and adult children with ASD touch my heart and my need to write. If I give away too much information or as one of my children call it ‘TMI’ please remember it is done with the hope I can give other parents hope and joy when raising their child.

What Parents Need to Know About Raising a Self Advocate

One of the side benefits of inclusion is our children learning to be self-advocates. A self advocate is someone who knows how and when to make their wants, needs, and opinions know. Parents do not always realize how important this will be in the long term. Letting our children see us advocating for them as early as possible it important. Parents are the first models and teachers for their children. One of my children with ASD always went to her IEP meetings. If we want our children to be able to advocate they need to see us do it. Another one of my daughters with autism didn't want to go to any meeting. She definitely could advocate not to go! Many times children with disabilities are taught to be compliant. There is a time and place for compliance. There is also a time and place to advocate for yourself. Learning how and when to do this is just as important a skill. Whether it is advocating for services or modifications in school or advocating for medical services it is important for our children to see us do it. Some children will get upset so we need to have plans for an aide or family member to be ready to take our child out of the situation. At different points in life our children will start mimicking what we do. This might be annoying when they do it with us but is critical for their long term health and growth. It is also not surprising that a child with a disability would advocate with us first because we are safe people in their lives. Later in life our children will be able to tell people in the world what they want or need. They will even be able to do it when they know other people do not agree if they have seen parents and others do it. When we as parents are gone this will be an important daily living skill our child will need.

The Irlen Method for Children with Autism

Raising children with autism is different with each child. I have two children with autism and they are completely different from each other. Because of this it is difficult to find exact treatments to help your child work with the characteristics he or she possesses. One of the problems a child with autism may have is what is called a Visual Perceptual Disorder. Thankfully there are some tips and techniques that can improve visual perception. It is quite possible that using this treatment a child with autism can see more clearly, increase comprehension, and help mitigate some of the behavior problems associated with autism. Many children with autism have problems when they experience sensory issues. Those issues can be just a general overload of input or distortion of sensory information that can make a child uncomfortable or even cause pain. As adults we have the same experience at the end of the day when we have just had it with everyone and everything. Parents and professionals may find a child with autism becomes overloaded from colors, lights, shapes, and patterns. Too much of any of these can cause the child with autism to display unwanted behaviors or just shut down. This may be multiplied by family factors particularly when there is a parent who had trouble reading or had visual perceptual problems themselves. . Many children with a visual perceptual disorder respond to a treatment called the Irlen Method. This treatment uses color to create a background the world. This background makes the world easier for the child with autism to deal with and live in. Most people have heard of someone who uses a color filter over a page while reading. It helps a child read easier and quicker. This is helpful for a child at that level. Another child who is not at the reading level yet may wear glasses similar to sunglasses that are of different colors. This helps the child have a color background to everything they see. Even if your child reads they may benefit from wearing the glasses the entire day. Since not every color works the same way you will want to see someone trained in the tips and techniques to try out a variety of colors and shades. Some families even use colored light bulbs in their homes. Children with autism can be helped in four different areas with this type of visual perceptual treatment. Those areas are depth perception, social skills and interaction, learning, and general physical well-being. A child with autism will be more oriented to his world because he or she can tell how far they are from objects. No more bumping into things. The world will have layers and dimensions. Because the child with autism is better able to handle his world there may well be calmer days. The child may well be able to learn to pick up on facial emotions if depth perception improves. Some children have reported they have less headaches and dizziness. Experimenting with different treatments including the Irlen Method can help a child with autism in so many ways. I found it was worth the effort with both of my children with autism.

Raising Children With Autism and Aspergers

I'm almost afraid to admit how different my feelings are for my daughters.  One has autism and the other has aspergers.  Don't get me wrong I think they are both perfect.  I don't know what others believe but I believe God sent them and for what ever reasons he sent them they way they should be. 

DD#1 is just perfect.  I can't imagine her any other way than she is.  She can't control many of the ways she expresses herself and here we are.  She couldn't change if she wanted to.

DD#2 is also just perfect.  But I can and do remember wishing she was different.  Some days she is so reasonable and easy to deal with.  It ALMOST seems like she can control her behaviors.  Some days she's almost typical.  Then she has a really bad day.  I realize it just isn't so. 

Everyone has to plan for DD#1.  They know it and understand it.  We do our best to craft her environment to best meet her needs.  DD#2 is different.  I still find myself advocating for her on a regular basis.  I also find myself trying to convince her to do the things she should.

It's not a good or bad difference in my feelings between them.  I'm just aware it is hugely different.  Do you know what I mean? 

DD Right Left Story

My daughter told me the funniest explanation.  She was arguing with her staff.  They wanted her to do something and she didn't want to do it.  Having a conversation with a person with Autism is sometimes a very interesting thing. 

I asked her why she didn't want to do it.  She said because she wanted to go left!  At first I didn't understand so I asked her again and got the same answer.  I'm sitting there trying to think of what to say and she tells me she didn't want to do the right thing.  She says she wanted to do the left thing.

The thing is she seemed to quite clearly understand what she was talking about.  I told she should do the right thing because she's supposed to do that.  She told me sometimes she just wanted to go left....

Lol, I just wonder who told her this and how they explained it.  She clearly got the difference between the right thing and the not right thing.  Lol. 

This is how my days go...  How is your day? 

A Little Bit More About Autism and Santa Claus

To continue this subject a little bit.  I woke up with a worry about what will happen to Dominoe and her Christmas after I'm gone.  I'm not going anywhere you understand.  I plan to live to be a 120 years old.  :)

Anyway, I was worried.  I called my oldest son to tell him that she still believes Santa Claus comes on Christmas morning.  Someone one, mainly him because he was the oldest, would have to make sure that happened.  He said ok. :-/

He's a man of little words.  LOL   I hope you are having a wonderful holiday. 

Autism and Santa Claus

I woke up in a panic a couple mornings ago.  I couldn't remember if the daughter, Rose, with aspergers believed in Santa Claus or not.  I finally called and asked.  The older daughter, Dominoe, who has autism still believes Santa Claus passes and there are presents on Christmas morning.

I can remember when my youngest, Mikey, who was only ten years old finally came to me and said there wasn't any Santa Claus.  He had been saying it for the past two years.  I had been putting him off by saying if he didn't believe in Santa Claus he might not get any presents Christmas morning.

Well at ten years old he finally said he didn't care.  Sooo I had to fess up.  Well as anyone knows who has more than two children information in a family works it's way around.  (I have five children.)

The daughter with aspergers (Rose) didn't believe him.  She really didn't believe him for another couple of years.  I guess that would have made her about 14 years at that time.  The son wasn't finished with telling though.

He had told his Dominoe that there was no Santa Claus.  I remember the look on her face.  She said, "There's no Santa Claus?"  I told her there was and gave both Rose and my last son, Mike, my best momma says to 'shut up' look.

Later I talked with Rose and Mike in private that Dominoe might always believe in Santa Claus.  They tried to understand at the time.  They certainly understand now.  To get back to the start of this post Rose, the daughter with aspergers, doesn't believe in Santa Claus.

I know this is going long but Rose doesn't get a whole lot of autism type services.  She doesn't seem to be 'disabled' enough.  Most of the services she gets is through mental health rehabilitation services.  Dominoe on the other had gets supports 24/7.  I know a lot of it is because of the behaviors.

I wonder though if people who believe in Santa Claus at 24 years old don't need more autism services.  I just wonder...

I hope and pray you have a Peaceful Christmas and New Year!

Autism and Siblings

It was time for another one of those discussions.  The one that I periodically have with one or the other of my two oldest boys about their sisters and autism spectrum disorders.  The oldest son is 32 years old. 

I'm always mystified because one or the other son will tell me 'Why are you telling me this?'  It's not like we haven't had these discussions for year.  I then go into the whole speech that it is because as I get sicker they will have to do more.  Of course they need to know things that I know. 

I guess what brought it to mind again is one of the adult siblings I know.  They just found out that their brother has a medical condition that can be helped by a specific diet.  The sibling reminded me of my son.  The sibling is doing some of the medical stuff right now. 

Anyway mom remembered the diet.  I didn't say anything to the sibling but I sat there thinking about how guilty the mom is going to feel shortly.  She knew and probably forgot over the years.
So I keep telling my two oldest about things, over and over. 

Self-regulation and Aspergers

You know I have to tell you when I bump into a term that has helped me through the years.   There have been several of them.  Perservation, de-escalate, and independant living skills are a few.  Well the latest one that I heard concerning autism and my daughters is self-regulation, particularly aspergers.

So here goes, as close as I understand self-regulation is when you play hard and work hard and know when to do each.  So like you know you have to go to bed at a certain hour because you have to be up at a certain hour. 

You may not have to do that on some nights because you do not have to be up then next day.  Therefore you can stay up a little later.  Well people with aspergers seem to have alot of difficulty self regulating. 

At least one of my daughters who has aspergers does to a huge extent.  So we have lots of discussions about things like this.  When I used this term she asked what it was.  Hence my definition of playing and working at the right times. 

The daughter with autism doesn't regulate at all.  Hence her behavior problems.  She doesn't know how to calm herself. 

Hair and Aspergers

I know I've spoken about this somewhere before.  My daughter with Aspergers hates to brush, comb, or otherwise touch her hair.  The daughter with Autism doesn't like it either but she's a little more tolerant.  I know it's a sensory issue.

But it's her hair for goodness sakes.  It gets so tangled there are balls of tangled hair in the back.  It's not like I can make her take care of her hair.  She is 19 years old and everyone in the world reminds me that she can do as she pleases.  Of course she can.  If she understood consequences that would be a different matter.

We do all the things I tell other mothers to try.  We keep her hair short.  I buy enough detangler that I should have stock in one or two of those companies.  I take her to the beauty shop and let them wash it and style it, a little, when she'll let me.  It just gets so knotted sometimes.

Well at one point the people she lives with, the boyfriend and his family, had some problems with child protection.  It was the mother and her boyfriend's baby.  Anyway during the whole mess, pictures of my daughter, the one with Aspergers hair, ended up in the baby's file with CPS.  They have the baby back.

God forgive me, this last time her hair was a mess I reminded her of it.  I know that's not the major reason the baby was taken away.  My daughter just has to learn at some point that what she does has consequences.

She cried.  I cried.  It took about a week to get all the tangles out but they came out.  I feel horrible.  I'm positive the reason she doesn't get some things is because of the Aspergers.  Tell me I'm not the only one having these type of painful to the bone discussions with their child with Aspergers.  Right??