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Guest Post by PCA

Guest Post by PCA

“What is Dominoe doing?” a question that would be asked of a girl often when she was first met by the writer. Now, Dominoe is a young woman and that question is still being asked. Dominoe had personal care attendants that helped her to carry through her days. At school there were aides that helped her.

Dominoe, through the last seven years, has made some progress and none of it is measurable on any test but ‘mama’s test’ and ‘old lady’s test’. She was not able to use the microwave, not because she was not capable of performing the task. The safety question had come in the picture.

As I became her direct care companion (DCC), this older (59) woman decided; she needed to be able to get a snack when she wanted one. All of the dos and don’ts were well taught so Dominoe could choose and zap a snack (all under the wary eye of her DCC).

One day her mom called, Dominoe is cooking in the microwave some noodle soup. She (mama) was surprised that she (Dominoe) had been taught to do this function and she could do it so well. As well as she knew the precautions.

Autism and Obsession

Autism and Obsessions

Dominoe used to save bottles of Coke. Then I didn’t realize how that was a characteristic of someone with autism. She would line them up in her room so she could see them. It got to be gross though. The half drank bottles started to have mold in them. I finally had to tell her she could not do that. I did let her keep the bottle caps though.

So for awhile we had 100’s of bottle caps, especially the red Coke ones. Then she got tired of those.

Then it was ink pens. She would go crazy for a pen. People would give them too her all the time. She still has some of them.

Now it is make up. She has drawers of make up. And she wants to buy more. At least it is age appropriate for her at 21.

I always remember these things when I hear other people talk about their child who has Autism’s obsessions. Sometime parents talk about how it interferes with other activities. We never really had that problem. Well except for moldy Coke! My child was still in high school when she collected pens so she wrote with them. The make up is ok. She hardly wears it. She just saves it.

Autism and The Job

My daughter has had a job with Burger King for 3 or 4 years now. She started out doing job training there in high school. She was not paid for it then. Even with the characteristics of autism they hired her during the summer and kept her on.

I thought it was due to the job coach from the school. She really was a good job coach. She really got it about people with autism being able to work. It was not her. She was good but it was not her.

I realized after high school that it was the store manager. The store manager was wonderful. When we did not have the job coach it was the store manager that made it work.

We tried to expand my daughter’s schedule to 5 days a week since she was out of high school. It did not work. The store manager still did not get rid of her. She just put Dominoe back on the two days a week she was accustomed to.

Dominoe cleaned the dining room and the bathrooms. She went in at the same time both days and got off roughly at the same time.

Well the manager retired. The new manager was young but I hoped. It did not work. After the second time that I know of that they tried to let Dominoe go, God forgive me I just let it happen. I could have disagreed and even maybe convinced them that she was not the only person responsible for the problem, but why?

The first thing that happened was the new manager wanted to change the time that Dominoe came in. Of course you know how well that went over with someone who has autism who is so used to structure and rules.

Then she wanted to let Dominoe go because the store was not making as much money. One of the other employees took up for Dominoe.

In the end the new manager took her off the schedule one day and the next weekend because they failed an inspection. Supposedly they gave her time off, because Dominoe filled the disinfectant with water. There are two staff who check after Dominoe, but I was just tired of it. They said they were not putting her back on schedule.

Dominoe cried but I told her there was another job out there for her.

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My Child with Aspergers

Aspergers is much harder to understand than Autism in many ways. My child with Aspergers is so much harder for people to understand. She talks like other children. People don’t see the way she acts or speaks rudely to other children and adults as part of her disability. It is though.

Typically Aspergers is a disability that is not diagnosed until later as a child is a teenager. Because of this there is the probability that there will be a lot of misunderstanding before the diagnosis. There is also a lot of opportunity for bullying in this type of situation. Some children feel justified in bullying a child with Aspergers because they can be so unpleasant. Other children do not understand that these children do not understand.

Some of the things to watch out with this disorder are social confusion, fixation with a specific subject, problems with change or transitions, and difficulty understanding other people’s motivations. Many of these are the same problems a person with Autism can have. Because someone with Aspergers have better control than someone with Autism you might not even realized they are fixated on a subject.

Some of the same techniques that are used with a child with autistic behaviors can be adapted for the child with Aspergers. Many times I thing of these two disorders the same because they are considered part of Autism Spectrum Disorders.

In some ways one is easier than the other. One is more noticeable and sometimes easier to get help for. One speaks more and is easier to reason with. On the other had that one argues more. Life with Autism and Aspergers is definitely interesting.

Lotion and Autism

As I have mentioned before I actually have two daughters on the Autism Spectrum. The second daughter has Aspergers. Some times I still miss things with her.

She has been complaining about paper cuts over the past few days. When I would had her a paper she would fuss about not getting cut. I finally focused on it in the car this morning. I offered her some lotion. She said no. In her typical one word way of talking. Like a good mommy I explained that the reason she was getting paper cuts might be because her skin was so dry. Again in that typical autistic fashion she grunted no.

I had to think about it for a few minutes. Finally I thought about the smell and asked her if it was the smell of the lotion. Smells really bother this child. Does that happen with any of you who have children with autism? Finally she grunted yes.

This one took some fast thinking as we were getting close to school. Finally I came up with the idea of putting odorless chap stick on my hand and then rubbing her hands with them. Did I mention she also can not stand greasy things on her hands? Any way she finally agreed.

I have not had any complaints of paper cuts since then. At least one problem solved.

I Think My Child Has Autism: What Do I Do

If I just learned my child had Autism there are two things I would start to work on immediately. The first is getting a good evaluation. Even if your child is young. The second thins I would do is start working on early intervention services right away. I would do this no matter what any one else thought.

A good evaluation is sometimes hard to get. Typically parents take their child to the pediatrician. There are many pediatricians that still will tell parents to wait. My suggestion is to trust your gut. Although doctors are more and more taking parents seriously trust your gut. Try another doctor.

You can also contact your local Parent Training and Information Center or your local Autism Society and ask. Although they will not tell you which doctor to go to they can give you a list of local or some what local doctors. Keep asking and looking until you are satisfied. I am heart broken when I bump into parents who have known there was some type of problem for years and did not get answers.

If you think your child has autism or any delay and is three or younger start looking for help at the same time. You should call your state’ public health system or Mental Retardation/ Developmental Disabilities System. As much as I hate the term Mental Retardation, it is a specific medical term that will get the attention of medical personnel. They can hook you up with your state’s Early Intervention system. It is called different things but keep looking and asking.

They will do their own evaluation and start needed therapies. Even if you are wrong and your child is just a slow starter they will be able to help. Insurance or Medicaid can help pay for this. Remember look for free or inexpensive services first.

If your child is over three call the education system in your area. They can do a free evaluation. It is a process but keep at it. If they provide services they can do it free of charge.

Time is of the essence. Get any therapies your child qualifies for as quickly as possible. Be as diligent as you can about getting them there or being available. There is much, much research behind the theory that children with autism or any other disability will benefit from early help.

Four Basic Rules of Social Engagement for Children with Autism

Children with Autism have little ability to navigate social situations but with a little work and reinforcement they can learn some basic rules. Social manipulation is even harder so should be avoided at all costs. Children with autism do not have to be the same as typical children. And I would not want my child to be like a typical child. She would lose qualities that I love about her. Anyway Four Basic Rules:

1. Keep your promises or do not make a promise. Do not promise if you can not do it or even if you are not sure you can do it. If the promise is to keep a secret do it. The only time to break a promise is if someone is going to die. Then you must tell.

2. You may not think anyone is uglier than you, dumber than you, or anything like that. You may not guess why someone is doing something and hold it against them. Even if you know you must stay away from the situation. You may not make fun of someone.

3. Be thankful for everything you get. Someone worked hard for the money or stuff you get. People go out of their way to do favors for you. Repay your favors many times over.

4. Do not make trouble. Do your work. Once again keep your promises. Do what you do well. Do not break the law or the rules. Other people may follow you

Yes I realize all these rules are easier said than taught. We automatically do it with typical children. We just have to take a more direct approach with children with autism.

Autism and Social Skills Accounting

Stephen Covey talks about a model that may be helpful to parents of children with autism. The model involves imagining that social interactions are like deposits into and with drawls from a bank.

It is of course not as easy as just talking about deposits. We also need to talk about the deposits being what happens when a child does something that the other person sees as a benefit. The important part here is that the other person has to see it as a benefit whether the child with autism does or not.

Deposits can be large or small. Ideally we want to teach our child to make the largest possible deposit with the smallest effort so as not to wear them out. There are many ways to make the most of a deposit.

Some deposits are just large because they are a huge help. A huge help for a child may be help studying for and passing a test. Small help for a child might be holding a door.

Some deposits are large because you were not expected to help. A good description of this might start with the explanation that it is expected that your mother or father will help. It may not be expected that a child help another student. Therefore the deposit is considered larger or worth more.

Also it is important whether someone asks your child for help or your child volunteers. A child who volunteers to help will get a larger deposit. This is an important technique to explain to your child with autism as it will encourage your child to look for ways to help.

An important idea to talk about is something that has nothing to do with the size of the deposit. It is where you start in this process. If the child with autism starts making with drawls with a typical child, that child will expect your child to continue to make with drawls. Of course the opposite happens. If your child starts by making deposits then the typical child expects deposits.

So now, what is our child going to do with these deposits? Deposits might be used as a way for our child to get out of activities and still be friendly. Sometimes we as parents may not even know how the deposits are being used by our child, but just by the nature of autism they will get used!

Good Grief! Dominoe, Autism, and Money

We finally have had to come up with some limits in the Dominoe buying clothes saga. She wants to buy clothes EVERY day. Then she tantrums when I say no. With her little autistic self!

Anyway know she can only buy clothes once a week.

She wants me to get a ‘card’ for her now. Oy veh! I’m going to have to think about this….

Social Skills Training for Children with Autism Part 2

Social Skills Training for Children With Autism

Once again it is up to parents to implement social skills training for children with autism. In the first part of this series we learned the three stages of acquiring some level of friendships. In this part of the series we will look at a term called Social Accounting.

Social Accounting is done by typical adults on an unconscious basis. Because children with autism do not pick up the social skills naturally we have to in some way quantify what many of us do automatically. Some of us even employ Social Accounting openly. We all know the office person who has a list of who contributes to parties and birthdays and who does not. Ideally there should be four steps in the Social Accounting process for children with autism.

The first step is to give free chances to every new child our child is trying to get the attention of. The thoughtful process is to give that child a certain amount of time say two weeks or a month to get to know our child. During this time we need to talk to our child about giving the other child free chances to try to get to know them. Your child should ignore gossip. In the process of getting to know your child other children are going to say or do things your child might assume is hurtful. During this free chances stage your child will assume these things are a mistake or a misunderstanding.

The next step is for your child to help the child in question in some way. An alternative is for your child to give the child in question something such as a small toy or snack.

Third you want your child to start using one of the two or three skills they have developed to start carving out a place among the other children. Teach your child to use their skill to make the others happy.

Finally your child with autism must not worry about the other children giving him favors. At this point your child will be a ‘good will ambassador’ to other children. Your child also needs to be careful to spread his help around evenly to other children. You and your child need to look for skills they are so proficient in that it will not take your child a lot of time to help. The goal is to make progress in your social skills training. .

Social Skills Training for Chilren with Autism Part 1

Unfortunately one the things parents will find themselves doing is trying to teach their child social skills. Remember this is the same child who sees the world in black and white. It is possible, but parents need to remember that the trick is to use those quirks of autism to their benefit.

One of the ways to use the quirks of autism to your benefit when raising a child with autism is to teach them rules. If you can teach them a rule which will ‘fit’ into their black and white version of the world you can have some measure of success. Initially you will need to teach 3 stages of meeting people and becoming some level of friends with people.

The first stage is the “Do I want to know this person?” stage. Adults have learned over years that making a good first impression is critical. This is not always the case in social skills training for children with autism. Your child may be able to make a good first impression and then not be able to keep the impression up through the other stages. Initially we should teach our children not to make a bad first impression.

The third stage is the stage that children try to figure out how the other person might be useful to them. This can be a conscious or unconscious process. As parents we need to get over the feeling that this process is self serving or calculating. Our children need us to teach them in black and white terms that they can understand. The child with autism will spend their time better cultivating a variety of skills that maybe helpful. Preferably with your help they can cultivate two or three areas they really like.

The third stage is the stage our children actually form the different levels of friendships. We need to teach our children that typical children will form closed groups. We should make every effort to teach our child with autism to stay away from becoming a member of a group. Our children should do their best to remain friendly enough with all of the groups to be able to get regular invitations to join them in an activity but not become a member.

Dietary Considerations and Communication for the Person with Autism

Surprisingly one of the things parents tell me may help a person with autism is monitoring and adapting their diet. Of course not all people with Autism will benefit from restricting some foods but the possibilities are worth looking into.

The explanation is that some foods turn into opioid peptides when digested. These opioid peptides then can cause problems with normal brain functions. This is especially significant when you look at research showing 70-80% of people with autism have very high levels of this substance in their urine.

Cow’s milk and other milk products have casein in them. Casein is one of the foods that change into opioid peptides when digested. Casein is also added into other products so be sure to check the labels! Wheat and grains have gluten in them.

Once again gluten is one of those foods that seem to give people with autism problems. This includes breads, pastas, some snacks, and the list goes on. It also takes a long time for gluten to completely work out of a person’s system. You should plan on trying it at least 6 months before you will be sure you are seeing improvements.

Although we did not use it, some families have started to use gluten and/or casein free diets. Some families have done it with the entire family and have noticed improvements in all of them. Parents, including Jenny McCarthy, have described improved eye contact, less stomach problems, less anxiety, clearer speech, and improved behavior.

One of my children takes medication for behavior problems associated with people who have autism. Although we do not like a lot of medication it was important to controlling some of her aggressive behaviors. I continually review the reasons she is taking a medication. It is also important to our family to look at whether it is working or is still working. Over the years some of the side effects have been more of a problem than what the medication was supposed to help. That was a whole different conversation with her doctor. Just like gluten free or casein free diets, medication is not the answer for everyone.

Introducing Applied Behavioral Analysis for People with Autism

One of the treatment options for people with Autism is Applied Behavioral Analysis or ABA. I know parents who have paid for ABA therapy and spend time doing ABA therapy with their child. They seem to be quite satisfied that their child has been taught to be compliant in the process.

ABA is based on some of the same beliefs as Positive Behavior Supports. The theory is that desirable behaviors can be increased with rewards or in the case of ABA with our reactions. And the reverse undesirable behaviors can be reduced by rewards or reactions.

The behaviors which ABA concentrates on are literacy, educational skills, social skills, communication skills, and daily living skills. The daily living skills includes motor skills, food preparation, personal care, cleaning, time, money, and work skills. ABA uses an individual approach developed for each child. Each skill is taught in very small steps, like dressing might start with putting on socks. ABA is typically done by therapists or trainers and by parents. It is at least a 40 hour week.

Some people are opposed to ABA because they believe it teaches children to respond like a robot. But as I said parents who I know who have learned and taught ABA love it. Another problem with ABA is that because it is so time intensive it tends to cost a lot. Some parents have found tips to help with this problem but even then there are costs involved.

More Dominoe, Autism, and Money

So now Dominoe wants a pair of shoes. I tried really hard to convince her to wait till tomorrow after work to go get shoes. She was insistant.

I could tell by the look on her face and the way she looked out of the side of her eyes….She had enough today.

Finally she said if she waited they (the shoes) might be gone!

I told her if she pitched a fit in the PCAs car they would come home without shoes. I told her if she pitched a fit (we call it a floor show) in the store they would come home without the shoes.

She got her shoes.

Although I am excited she has finally figured out she has to have money. Now what? She cant spend like this forever.

What to Look for When Helping a Person with Autism

People working with people who have autism need to understand how behaviors are a form of communication. Tantrums and meltdowns are not just willful behaviors. Sometimes they are the only way a person with autism can express themselves. People especially need to understand this within the framework of positive behavior supports. An additional need is to plan for repeat problems. People need to look for usable strategies and techniques to teach social skills to people with Autism.

Specifically people should look at enjoyable socialization methods so people with Autism may experience success and the desire to build skills. Social deficits affect life at home, school, and eventually in the workplace. People need highly beneficial strategies that can be used across a variety of settings and routines. The strategies should be practical and effective solutions to assist ‘typical’ people. The strategies should also assist people to become more understanding, accepting and engaging of those with social difficulties.

Part of behavior management strategies is the process of building a relationship on as many levels as possible. Then within the context of the relationship people with and without Autism can work on collaboratively solving problems with behaviors. It also includes doing whatever possible to avoid power struggles.

Another part of behavior management for people with Autism is to build social skills. This should be done with formal lessons on social skills. A social skills training program should also teach strategies for the person with autism to be able to generalize the skill from one situation to another.

At the same time a person with Autism needs social skills training, a typical person needs sensitivity training to better be able to work with an individual with Autism. People can use a variety of ways to practice both the social skills and the sensitivity, such as lunch buddies, peer buddies, and class buddies. Other techniques to be investigated with a person with Autism are conversation skills, cooperative play skills, emotion management, understanding others’ feelings, and dealing with teasing.

Dominoe, Autism, and Money

or a long time I have known that Dominoe does not have any idea about money. On the other hand she always surprises me….

She came running into the living room yesterday morning. She says you only gave me five dollar.

Let me explain. I don’t cook. I give her spending money from her check everyday to eat and buy stuff she wants. When she runs out of money I give her money anyway.

Well, I told Dominoe no that was her regular amount of money. She says but I want to buy another jacket. Yesterday, she came home with a matching jacket and pants.

It was time to investigate. I went to the PCA and asked where the money had come from for the jacket and pants. This PCA is young and they go to young people’s stores. Remember Dominoe is 21 now. Anyway the PCA started laughing. She said they had seen the clothes and Dominoe had told her(the PCA) she wanted to get them. The PCA told her that she did not have enough money. The PCA tells me (laughing) that when they got home Dominoe started pulling a dollar from here and five dollars from there. Dominoe kept asking if that was enough!

You see I usually give her enough money to get up to a certain amount each day. So if she has extra money I just put enough to get her to that amount. This has been going on for years and years. I am just tickled to death that she decided to hide her extra money.

And yes I gave her extra money for the jacket she was after. (So much for the budget.)

7 Tips for Raising a Child with Autism...and a Promise

Tip 1 - Changing the Environment - When we have a child with autism many times we spend time looking for the reasons why a behavior may be occurring. In the process of looking for reasons we sometimes overlook the easy solutions to the problem. One of the solutions is to change the environment to meet the child’s needs.

Tip 2 - Look for Free Services – A parent is going to use every resource available to help their child. They need to stop and take a breath. It takes extra work to look for free resources but this will help preserve their insurance for as long as possible. Insurances have caps that may limit the amount of services. They also have co pays that can figure into a formula that determines how much help your family can get.

Tip 3 – Is the Behavior the Result of Their Age or Their Disability- Many times parents are discouraged because they believe a particular situation or behavior will go on forever. If you have older children you might be able to compare where this child is in the process of growing up. If you do not have older children ask someone who does! As a matter of fact you may want to ask someone anyway. It helps to consult with someone who has a little distance.

Tip 4 – Is It Reasonable or Fair- If you run into a situation or a decision you think is unfair say something. Your child has no one else but you. You have to stretch out of your comfort zone and say something.

Tip 5 – Do Not Give Up – Everyone becomes discouraged at times. You can do this. I know many mothers who never thought they could and they are doing it. They are raising a child with autism are all the time.

Tip 6 – What Other People Think Does Not Matter – My child has melted down in a grocery store and a restaurant. Of course I thought about all the people who looked at me disapproving or even made comments. It is easy for people who do not know what is going on to judge. Sometimes I explained and sometimes I didn’t. And it was OK either way.

Tip 7 – Not All Children with Autism Are Alike – Sometimes what works with one child does not work with another. Along this some thought sometimes one thing works with one child with autism and sometimes it does not work with the next child. That is just the way it is.

And the promise – Your child with autism will make you the person you will become. You will be stronger, smarter, and more creative than you ever thought possible.

Having a Blog Is Interesting

I write what I like here.
It makes me happy.
I wonder if anyone reads it or cares?
I love being a mother.
Especially Dominoe’s mother.