Initial Steps for Parents of Children with Autism Having Problems in Special Education Services

I work with parents of children with disabilities on a regular basis. Many of those parents are parents of children with autism. At the point parents find me they are usually in some type of crisis with the school system.

After doing this for many years I have noticed some patterns that I hope to capture and write about. Sometimes the child with autism has been suspended or expelled. Hopefully the parent has reached out before an actual expulsion.

I know the parents I work with would like me to talk to them or make some calls and do something about their child’s situation. Fortunately I have learned that for long term results for the parents I should not and do not do that. If I do the school system personnel start interacting with me.

If I get the parents to call and ask for documents or ask questions, they may have to call me back several times BUT the school system personnel interact with them. That works better for their child and for them. It is part of the parent being and learning to be the expert about their child.

From the beginning I tell the parent we need to meet, just me and them. Then I give them a list of several documents I would like to see. If they do not already have those documents then they can go to or call the school and ask for them.

First to get a snapshot of what has or should have been going on this year I need the current IEP. Second I also need to see the last 3 year evaluation from the school system. Where I live there is a smaller evaluation if we are just agreeing that the child continues to need special education services. I want to see the evaluation where more in depth testing was done. Third I would like to see behavior plans, office referrals, Response to Intervention (RTI) reports, suspension reports, or anything else. 

All of those things are important before I am able to do something for a child with autism or any other disability. Ideally those are things the parent has readily on hand. Even if it is not the parent has some verbage to use with the school system to let them know they are learning how special education services work.

Dominoe, my daughter 16 years

Home for Mother's Day

Dominoe came home for the day for Mother's Day. She just wanted to come for the day which was fine. I have noticed that when she comes to my house it is for less and less time. That may be due to her sister's babies. With a 19 month old and a 6 month old things are busy and loud. My daughter does not like loud. It is a sensory thing.

Another thought has occurred to me though. Maybe she is just getting older and does not want to be at my house as much. At her apartment she is queen of her castle. My older children are like that. They like their own house. She has staff with her waiver services 24/7 so that helps. I am not sure what we will do if or when that level of support is gone. I have a Plan B but it would be hard on her. I suppose we shall see.

A Baby Boy

Well exactly one week and one day after we found out my daughter was pregnant she delivered a baby boy.  He's healthy and wonderful of course.

She and I on the other hand are not getting along well.  I was able to keep my mouth shut while she was pregnant.  My patience is gone now though. I did fuss long enough and loud enough that she has the shot before she left the hospital.

We won't have any time where she calls herself on the pill.  I understand and agree she has the right to have children if she wants.  I also know she doesn't understand the consequences of things.  There has to be some way to balance the two.

I'm still concerned that she didn't know she was pregnant.  I'm still wondering if it is the Aspergers. How can you not know?  She is still a wonderful mother but two babies under two is rough.

She Went To the Doctor for a Cough and Came Out 36 Weeks Pregnant

As you may remember I have two daughters with Autism Spectrum Disorders.  One of them has Autism and the other has Aspergers.  Lots of things have been going on with both daughters.  I just forget to write about them.

Well Rose, the daughter with Aspergers, has had this funky cough.  At times it got bad, so I told her to make an appointment with the doctor.  She went to the doctor on Thursday afternoon.  By the time she was done she was 36 weeks pregnant.

Because she and I argue so much I have been letting her go to the doctor by herself since she was 18 years old.  Particularly since EVERYONE tells me she is an adult and can not be forced to do things like take her medication or use a reasonable form of birth control or cooperate with her case worker.

Then when she had her first son I still let her go to doctor appointments for her and her baby by herself.  I've learned that I talk so much that she doesn't talk when I'm there.  She's a very good mother.  She watches her son like a hawk.  I would only go with her to the doctor if there was a problem.

All of that to explain why I wasn't with her.  The other thing about Rose is she loves her cell phone.  She calls me or texts me most of the time she is in the doctor's office.  She called me that Thursday.
She said the doctor listened to her chest and felt her stomach.

He told her her stomach was 'distended'.  She asked him 'What does that mean?'  He told her her uterus was inflamed.  She asked him 'What does that mean?'  He told her she might be pregnant.  She kept telling him no.  Finally he got an old sonogram machine and gellied up her stomach and let her see and hear the heart beat.  He tried to get her to look at the head but she wouldn't look.

I'm so upset.  I knew she had gained weight but so had her boyfriend.  They moved in about 5 months ago.  We always have food.  They don't have to walk a mile to and from the store.  I figured that was why.  I had been giving her the deprovera shot since March.  It didn't even occur to me she was pregnant.  She had taken a pregnancy test before she started the shot.  She was probably pregnant since January...

And did I mention she has a son.  She's been pregnant before.  How can you not know you are pregnant?  I wonder if it's the Aspergers.  Maybe she is so unaware of her body?  I know problems with realizing where your body is in relation to your environment is one of the problems with ASD.  I really can't come up with another explanation?  What do you think?

A baby is a good thing.  A baby is a good thing.  A baby is a good thing.

Yes People with Disabilities Can be Unsavory Characters

My daughter has a new boyfriend.  I learn about him on a Wednesday.  He showed up at her door, which was fine.  I won't use his name for reasons which will become apparent shortly.  The DSPs (Direct Support Personnel) are supposed to call me, which they did.  They reported from the beginning that he had a disability.


I like to know when something different goes on because most of Dominoe's schedule and life is pretty structured.  If you have a child with autism you know how important that structure is even if they are an adult.


I'm not sure if they saw each other the Thursday.  I just don't remember.  I know the Friday they did.  There is going to be an election in a few months.  One of the people running for something or the other threw a dance in the recreation room at the apartments where DD lives.


The next day, Saturday, we met at a restaurant for DD's birthday.  She was 26 the next day.  The new boyfriend wanted to attend so I said yes.  He gave DD an iphone and activated it for her birthday.  I'm aware he has a disability and asked lots of questions.


He was aware that the phone was expensive.  He was sure he had the money.  Even though he has a disability he does not have a service coordinator or a provider agency.  He worked at the same place as DD but I'm not sure if it was competitive employment or not.


At some point the next evening he ended up with all of DD's gift cards.  When I fussed and asked her about it, she told me they were hers.  And...she's right so I didn't say a whole lot more.


The next evening she gave him her birthday money.  Now I really fussed.  She told me it was 'theirs'.  Then I really fussed.  There is no theirs with a guy you have been seeing five days.  We continue to discuss this issue and when money 'might' be shared between a couple.


I continued fussing and one of the DSPs who has been with DD a long time.  She had a long discussion with this young man about DD not understanding.  The next day he brought back the cash but to this date we have never seen the gift cards.


I know this young man knows more than DD does because he drives and he can carry on a general conversation by text.  Yes, DD texts but it's 'lovey lovey lovey' or 'mothery mothery mothery' or something  similar.


At some point he stopped talking to DD.  He also asked one of her DSPs to be his girlfriend.  He told the DSP her would buy her a cell phone!!!  He has been seeing DD less than two weeks.


I'm in the process of trying to get DD to understand that he isn't a good guy.


I'm also amused when I think of the people who say people with disabilities are little angels - NOT. lolol  Do you have a similar story?

Not a Good Year For Autism in Our Lives

I have to admit sometimes I'm full of my self. Things have been going so well for quite a while with my oldest daughter's services. Even the behaviors associated with her autism have been going fairly well. Then we had several problems right in a row and things have gone south. FAST. Somehow Dominoe burned herself with a hot bowl of soup. I haven't ever gotten a straight story from Dominoe if she carried the soup to her chair or if the DSP handed it to her that hot. As you may know with people with autism, getting a full accurate story is challenging. She's better now. But we spent a couple months going to the wound care doctor and having the wound debried. I now know more about would care, bandages, tapes, and burns than I ever wanted to know. I have had intense discussions around health and safety. I have had even more intense discussions about following the doctor's orders with nurses and the provider company. Then the supervisor of the DSP's was let go from the company. Dominoe was very attached to her. The new supervisor is totally different and definitely not hands on. Things gradually got to the point that we started looking for another provider company. There started being issues in the process of linking with the new company. I thought they were misunderstandings. Unfortunately when I spoke to someone in the local state office within 2 hours the new provider decided the couldn't meet Dominoe's needs. I guess it's better I found out now. I know people in the state office across the state. I don't want a provider company who thinks they might be able to stop me from speaking to anyone about how things work. On the other hand I feel like I have done something wrong... Things were going so well for Dominoe. But then maybe I'm too full of myself. It's really about Dominoe being healthy, safe, and happy.

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?