Thursday, December 10, 2009

New Things/New Blog

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Wednesday, December 2, 2009

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.

Tuesday, December 1, 2009

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.

Sunday, November 29, 2009

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.

Wednesday, November 25, 2009

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Sunday, November 22, 2009

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.

Friday, November 20, 2009

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.

Monday, November 16, 2009

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.

Saturday, November 14, 2009

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.

Thursday, November 12, 2009

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!

Tuesday, November 10, 2009

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….

Sunday, November 8, 2009

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. .

Friday, November 6, 2009

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.

Wednesday, November 4, 2009

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.

Monday, November 2, 2009

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.

Friday, October 30, 2009

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.

Wednesday, October 28, 2009

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.

Tuesday, October 27, 2009

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.)

Monday, October 26, 2009

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.

Sunday, October 25, 2009

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.

Saturday, October 24, 2009

Discussing Autism Types

There are many autism types. When people typically think about autism, they think about people who are non verbal or people who have savant like abilities. Athough these are two types are important autism types there is more to it than this.

Autism is considered a spectrum disorder. What this means is that people on this spectrum can be at any point. Some have speech and some only have some speech. Many people with autism have conversational and public speaking abilities.

It is a disservice to think that people with autism are all one way or another. Just as many people with autism have savant abilities as not. Those abilities can also be in a variety of subjects.

To further complicate the topic of autism types is the problem of co occurring disorders. Disabilities like ADHD and cognitive disabilities can complicate autism. Another complication that can make a person with autism seen to have more problems is sensory integration problems. If the sensory integration problem is severe enough the person with autism will seem to be unable to communicate. This is because of the pain they experience in what we consider a normal day.

Hopefully you can see that autism types is a complicated subject. Whether autism, aspergers or pervasive developmental delays is important to people as a more definitive diagnosis. Then of course knowing and understanding the co occurring disorders is imperative.

Saturday, October 3, 2009

My 15 Yr Olds Post About Autism

Another name for AUTISM is Pervasive Developmental Disorder (PDD). PDD is the same thing as autism but in a more proper language. Pervasive Developmental Disorder (PDD) is a name for all kinds of autism.
Autism seems to affect more on boys than girls. The reason it affects more boys than girls is not yet proven. Stuff like family income doesn’t usually affect a child with autism.
One symptom of autism is pretend play. Another symptom is social interactions. A third symptom is verbal and non-verbal communication. Another is repeated bodily movements. One other one is if they show unusual attachment to an object.
Have you heard of the MMR Vaccine? Well I have, and most parents believe it causes autism in children. The only proof parents have is around the time the vaccine was given autism increased tremendously. Doctors think it was only a coincidence that it increased around that time but parents seriously don’t agree.
There are a lot of different treatment options for different types of autism but I’m just going to name a few. One is medication. Two is (ABA) Applied Behavior Analysis. Three is Occupational Therapy (OP). Four is Physical Therapy (PT). The last one I’m going to name is Speech-Language Therapy (SLT).
Medicine is used for a lot of things but I’m only going to name a few. One is mood swings. Another is tantrums my sister has them a lot. Another is outburst. Another is sleep difficulties which my sister has a lot and so do I. One other one is anxiety. One last one is Hyperactivity which me and my sister both have.
Complications can be caused by a few things which I’m about to name. One complication can be caused by Fragile X Syndrome. Another complication is Mental Retardation or some people call it a mental illness. The last complication I can think of is Tuberous Sclerosis.
Autism is been proven to be inherited by other family members. Take identical twins for instance if one has it so will the other. Which is really sad because they both have to have the same everything in every way? The risk of having a second child with the same disorder is very low but it’s possible. So watch it carefully.
Autism can improve over time with treatment and age. With some kids it might not though. With some children modifications have to be made because of the illness. But others get at least a little bit better over their life span and some get all the way better.

Tuesday, September 8, 2009

Is a Blood Test for Autism Necessary?

I ran across an article about the Autism Genome Project. The article is from the middle of 2007. Dr. James Sutcliffe is one of the doctors working on DNA samples from families with two or more members with autism. At the time they were hoping to be able to come up with a blood test that could predict IF a child would have autism. The article talks about the families’ urgency in developing this test.

It reminds me of the mothers who come into our office. In the past few years we have had several mothers who come in who are pregnant and have been told their child will have Down Syndrome. They have been offered an abortion. We give them information. In at least a couple of instances the mother’s have called months later and did not have a baby with Down Syndrome. I guess that is my first concern. That in the effort to know we will in effect throw the baby out with the bath water.

My second concern is about getting rid of all of the people in the world who are different. I have realized now and in years past that my experience with my daughter with autism is different. I enjoy the differences. Yes we still have the bad times. The barking that went on for almost a year. The evenings spent holding her head so she could not slam it on the floor.

Anyway I did experience all of these things, but I also experienced joy. The joy of seeing her do things that took her years to do compared to other children. The fun of figuring out the way she thought about things. The joy of seeing her face light up.

I am the woman I am today because of her. My concern is that if we had a blood test for the possibility of autism, we would miss those things and become a further intolerant society. So what might be next? A blood test for people who might have asthma or how about diabetes……

Sunday, September 6, 2009

Autism Symptoms?

I have heard many people over the past twenty years ask about ‘autism symptoms’. At different times the question has struck me differently. I suppose most people are expecting me to come out with a list of five things they can use to look at whether a person has autism or not. If only it were that easy.

Most people do not realize that the symptoms of autism can vary widely across children and adults. The symptoms also change depending on other characteristics of the child or adult we are talking about. Usually we are looking at three main areas concerning autism: social interactions, relationships, and behavior. Unfortunately it is not even that simple, as the severity of each of these areas can be different.

Relationship problems are talking about the ability to connect. To connect with parents, siblings, and friends is what seems to be sometimes the most disturbing part of autism. At least at first, that is what I and other parents I know have experienced. Social interactions or communication is an on going autism symptom that is particularly troubling as time goes on. My daughter got speech therapy all through school and sometimes besides what she got at school. It was hugely important in our family that she be able to communicate on whatever level she could. Then the behaviors, this is probably the biggest autism symptom I hear about once a family gets over the initial surprise at the problems with connecting.

Of course each one of these areas can be involved in various degrees. I hear professionals who are usually not parents talk about mild, moderate, severe, and profound as the levels of severity. At first I suppose I was a little offended but these four levels at least give you a frame of reference.

This description is probably just the start of all the things that come to my mind when I hear someone ask about the autism symptoms. Some other areas I will try to cover at a later date are the ages you might see symptoms, the different characteristics which will make a difference, why it is good to talk about autism symptoms, and why you might not want to wait for a doctor to identify autism.

Saturday, September 5, 2009

Update on Breaking the Car

I really do have a good relationship with the provider company that supplies my daughter's DSP/PCA. They have agreed to pay for a psychological and the psychologists time to help with a behavior plan. The state system to get the psychological has not done one since 1997. They are also so backed up right now. Did I mention that the provider company is so good!

Friday, September 4, 2009

Autism Symptoms and Technology

Autism is one of the harder disabilities in which you can identify technology. So I have a list of different types of technology that seem to help in some way. Or at least seem to help mitigate one or more of the autism symptoms.

A piece of information that I have run across lately is a different type of keyboard. It isn’t exactly a keyboard. It is more like a video game controller. The person with autism uses it to cut out the confusion that people with autism feel looking at a typical keyboard. It is also used by people with physical disabilities.

This piece of equipment is called an OrbiTouch keyboard. A human-factors engineer named Pete McAlindon of a company called BlueOrb developed it. You can look at the article here

Wednesday, September 2, 2009

Brain Stuff and Autism Symptoms

I keep reading interesting articles like this one . The articles talk about different areas of the brain that do or do not ‘light up’ when different situations presents itself. Usually the situations that are looked at are situations which highlight one of the many autism symptoms. This one in particular is about personal space and the different part of the brain, in this case the amygdala, which work. The amygdala works quicker when another person gets close, close enough to make us uncomfortable. In people with autism this does not happen. Even when people get nose to nose too close.

I keep reading articles like this and find them interesting for a couple of reasons. The first one being that we can tell which areas of the brain are used in different behaviors. I just find that interesting. The second reason I keep reading being that if we can tell which areas of the brain are not responding, when will we be able to use the information to make a diagnosis?

I remember years ago thinking that there must be more to it than this. You go to a doctor, they ask you a few questions about when or if your child does things, they look at a list of autism symptoms and then the doctor tells you a diagnosis. It just seemed like there should be more to it than that. But there wasn’t. There was no blood test or anything else. Of course they took blood but that wasn’t it. Anyway I keep reading these types of articles and trying to understand…

Saturday, August 29, 2009

Did ya miss me?

I just read a really great post at Extreme Retirement. He talks about all his interests and the cycles he goes through with them. I guess that is what is going on with me. I just never thought it through.

Anyway, my daughter, the one with full fledged autism, broke her PCA's car while I was out of town last Friday. They were at Walmart arguing about a video. To say the least I was not happy but at least when she kicked the windshield she didn't break it. She broke mine years ago.

At least everyone is listening to me now. The provider company isn't happy about paying the bill to fix it. We came up with a schedule to meet her needs instead of what everyone else wants. Schedules are one of those accommodations that help some people with autism. Or at least my people with autism. Let's see how that goes....

Tuesday, August 4, 2009

More Places to Get Equipment and Therapy

Of course there are the typical systems for people to get equipment. It is possible to get medically necessary equipment with a prescription through Medicaid if your family qualifies. Unfortunately to qualify your family is usually poor. You may be surprised at what your states definition is of ‘poor’. Some states also have a system that some parents can ‘buy’ into Medicaid when they have a child with a disability.

In Louisiana a person automatically gets Medicaid if they receive Social Security (SSI). In other states there are two separate processes. Some people can have insurance and Medicaid. The private insurance is the primary and Medicaid is the secondary. It gets complicated and requires strict attention to the paperwork but it is possible to get equipment this way.

Your state also has an office responsible for, as much as I hate to use this term, Mental Retardation. It is called different things in Louisiana it is called the Office for Citizens with Developmental Disabilities (OCDD). In some sections of Louisiana it can also be found in the Human Services District Office. This is another resource for equipment. These offices have a small amount of money that can be allocated, at times, for equipment or therapy for your child.

Parents have discovered another way to get equipment that they need for their children is to trade equipment with other families. Some trade groups just put up what they have to give and let anyone else that needs that equipment or tool get it. Other groups have a point system and keep track in some way of what they trade. Sort of like a babysitting co op. The secretary usually gets a small amount with each exchange for doing the math and recordkeeping. This system appeals to some people because they get ‘value’ for what they have. Other people don’t care.

Out of The Ordinary Places to Get...

Sunday, August 2, 2009

Important Reasons to Get Early Help If Your Child May Have Autism

Although a parent might not have a diagnosis early on, it is imperative to start intervention early if you suspect your child may have autism. As any parent knows children acquire huge amounts of information while they are the youngest. From crawling, to walking, to talking, to toilet training those first three to five years are packed and when a child seems to learn the fastest. Because of this ability to learn fast it is important to start with therapies as young as possible.
In this manner it is easier to build on strengths. One of the ways a child with any disability will learn to cope is to strengthen the skills that they find easy. Those early strengths can be used to motivate children as well.
In the case of poor behaviors it is easier to learn acceptable behaviors first of course. Learning how to teach a child with a different way of understanding is important. Nest it is easier to stop unwanted behaviors and teach replacement behaviors before they become ingrained. Unfortunately many people only look for help after everyone seems to be locked into a system of unproductive behaviors, whether the behavior is the parent’s or the child’s.
Equipment or tools are also easier to develop while a child is young. Teaching a child to use a communication board or communication cards while younger is critical. In the process the young child is taught to make choices. Later when or if a system of communication is needed it will be easier and quicker to go to the next step.
One of the surprising reasons that you will want to get help if you child might have autism is to help yourself. Parents of children with asd need to be able to think outside the box. Whether responding to odd behaviors or figuring out a different way to teach a concept, we need to be able to think in a different way.
Finally the last reason to get help is to develop the systems that will support you and your child early. Some of these systems will take years to fully develop so getting an early start no matter what the diagnosis is critical.

Friday, July 31, 2009

Exploring Myths of Autism and A Little Something Extra

One of the interesting Myths of Autism is that people with autism do not form personal relationships. I personally know this is a myth because of my own children. Having a daughter with autism and a daughter with Aspergers I can say that my children interact with me and their siblings. The also interact with friends and people in the community.
They have attached to me and the rest of the family. It is just different.

I always wonder how these myths get started. Possibly it is from the early belief by professionals that the reason our children have autism was because the mothers were what was called “refrigerator mothers.” I wonder how many mothers had trouble attaching to their children after that. Well anyway, professionals now agree that the mothers are not the problem

Quite possibly the reason this myth persists lies with our children. My typical children do not necessarily like to be around people they do not know, especially if they are around those people in a strange place. I am not sure why we expect children who might have a disability to be friendly. Just because our children ignore people they know does not mean they can not attach. Even when in the presence of someone they know they might not seem to be interested if there are other things going on.

Children and adults with autism have their own special way of worming their way into your heart. Sometimes that is good and sometimes that is difficult. When you have a self abusive child is one of the difficult times. It is sweet anyway.

Spending time a quantity of time with a person with autism and paying attention, really paying attention starts to give you the input necessary to be together in a meaningful way. It is just different. Different than anything some people have ever experienced. Raising children with autism has taught me to listen, really listen. That is a gift I would never want to trade.

A Little Something Extra

It was hard for me to let my then child with autism learn to sign. I wanted her to speak. But she learned to talk even with signs. It might be hard to let your child use a ‘talker’ of some type but communication on what ever level is so important.

During my research one of the things I have learned from people with autism is the benefits and the pure joy of being able to communicate. People with autism have mentioned that they did not want to learn to communicate in the beginning. They also say it is one of the most wonderful skills for building relationships.

Thursday, July 23, 2009

Out of the Ordinary Places to Get Needed Equipment for Children with Autism

(or any other disability for that matter!)

At some point in time most parents of children with autism will realize that they need different pieces of equipment or tools to work with their child. This article explores some of the ways parents have found to meet those needs.

After working with therapists many parents choose to buy specific pieces of equipment. Of course this is the easiest and probably the quickest solution. The only suggestion is not to forget to use the good shopping techniques you have learned in other areas of your life. Just because some of the equipment you need might be considered medical equipment does not mean you can not shop around for the best price.

Call several places or look up several prices online. Do not forget to ask for a discount. If buying online and you are buying several items will the company give you free shipping. Also check if there is a just as good piece of this equipment that is not considered medical or therapy. A ball pool can be expensive if bought through a company that supplies medical equipment and quite a bit less expensive when bought as a toy.

Another suggestion is to use skills you already possess. Can you barter those skills for needed supplies? Of course this might only work with a physical company but may be well worth your time. Small medical supply companies might be more than willing to barter typing, accounting, or even cleaning skills for equipment.

Do you know other parents who have children with autism? Can you trade items which your child no longer uses? If you know parent of older children would they be willing to ‘hand me down’ old equipment. Of course you need to make sure the equipment is appropriate and in working order. Bring it to your therapy provider and ask them to check the item out.

Another possibility is to look for local organizations which operate a loan closet. Many disability organizations operate a loan closet. Those closets can have pieces of equipment that are reusable as well as one time use equipment. One of our local loan closets at times has special formulae and the larger than baby size diapers. Of course you can find equipment that you can try out or keep indefinitely as well.

Tuesday, July 21, 2009

People First Language

People First Language is a concept where people use a thoughtful and considered way of talking about people with disabilities. It is also considered polite and respectful.

Typical people have learned many things form people with disabilities. It has only been in the past roughly 20 years that people with disabilities have consistently been living to retirement age. Surprisingly one of the things we have learned by people with disabilities approaching old age is that they consider their disability as only part of who they are. Just like a hobby or job or any other role they may have in life.

After all I do not want to be only known by some of my characteristics. How much fun would it be to only be known at that short grey headed square lady with glasses! I am so much more than that and so is my child. She likes animals, she works, she likes to go to the local soccer games, and she happens to have autism.

The technique of using People First Language is to put the person first and them the disability. An example is the child with autism, not the autistic child. Another example is the man who uses a wheelchair for mobility, not the wheelchair bound man.

Another benefit of people with disabilities aging has been changes in the fabric of government agencies. Many federal and state agencies are now required to use People First Language. People with disabilities have risen to different levels in agencies and have made their mark at least in the way they are referred to.

One of the tales of how People First Language was started goes back to World War I. After that war and other wars some veterans returned home with various degrees of disability. It is believed that men would be on streets with their hat in their hands asking for help. People passing would throw a few coins into the cap, hence the term handi-capped. Later people took exception to the term handicapped especially when applied to people. Even later came People First terminology.

As the parent of a child with autism and also a person who works in the system I choose to use People First Language. Not everyone I come into contact makes the same choice. Some of the parents I run into do not know or understand the concept.

At first I have to admit that I would get upset. I suppose as I have gotten older I have developed a different outlook. Modeling People Fist Language without being upset has been very effective. Some parents even automatically start using that way of speaking about their children. With professionals and other parents I wait till I know them better. Then I choose a good time to mention I want to talk about it. To date I have never gotten a bad response with this technique. As a matter of fact some of the professionals I know consciously work at it and ask me for help!

Monday, July 20, 2009

Everything I Learned About Being an Advocate I Learned From My Mother

Everything I Learned About Being an Advocate I Learned From My Mother
Stolen and Adapted by Mylinda Elliott

My Mother taught me to appreciate a job well done.
“If you’re going to kill each other, do it outside…I just finished cleaning.”

My Mother taught me Religion.
“You better pray that will come out of the carpet.”

My Mother taught me about Positive Behavior Supports.
“If you don’t straighten up, I’m going to knock you into the middle of next

My Mother taught me about Logic.
“Because I said so, that’s why.”

My Mother taught me to Follow an Individualized Plan.
“Make sure you wear clean underwear, in case you’re in an accident.”

My Mother taught me about Goals and Objectives.
“Keep laughing and I’ll give you something to cry about.”

My Mother taught me about Learning Styles.
“Shut your mouth and eat your supper!”

My Mother taught me to be Flexible.
“Will you look at the dirt on the back of your neck!”

My Mother taught me about Stamina.
“You’ll sit there till that spinach is finished.”

My Mother taught me about Hypocrisy.
“If I’ve told you once, I’ve told you a million times-- Don’t Exaggerate!”

My Mother taught me about Behavior Modification.
“Stop acting like your father.”

My Mother taught me about Related Services.
“There are children less fortunate than you in this world who don’t have wonderful parents like you do!”

My Mother taught me about Parental Participation.
“I brought you into the world, and I can take you out!”

Friday, July 17, 2009

5 Easy Techniques for Parents Coping with Autism

One of the first ways a parent of a child with autism or aspergers can cope is to take care of themselves. Parents of children who have autism are hard workers and engaged parents. Although this is a wonderful characteristic of parents in general, it can also be one of a parent of a child with Autism/Aspergers worst enemy. Because autism and aspergers can take over the family life it is important to do those little things for yourself and each other every day. It does not have to be something big.

The second way a parent can cope with raising a child with autism or aspergers is to use local support groups. Since people seem to be social creatures in general, it should come as no surprise at how important it is to have some one to talk to. Preferably someone who at least has some idea what we are going through. This is where support groups like the Autism Society come in. These groups provide the perfect opportunity to discuss, vent, or problem solve with people.

The third way a parent can cope is to use internet opportunities. Several internet techniques are available to parents. A parent can belong to an internet group/list to have someone to talk to via email. There are also discussion boards centered around children with autism. These options are much more readily available to parents in the middle of the night.

Surprisingly accepting help is probably one of the hardest ways for a parent to learn how to cope. It is also the forth way to cope on our list. We just naturally do not want the bother of having people so intimately involved in our lives. It is difficult in learning how to have helpers or personal care attendants in our homes on a regular or even occasional basis.

The final item on our list is easier. Consider the other people in our lives. We need to have an idea of how people can help us. Many times people will tell each other “Let me know if there is anything I can do to help.” Having some ideas ready is a technique people can use. If you are a single mom do you need the grass mowed? Or would it help if someone took your younger child for a couple of hours once a week so you could spend some quality time with one child or another? Do you need someone to pick up milk or a few things at the grocery store today?

This is a simple list of some of the ways parents can cope with the issues around raising a child with ask. It is by no means a comprehensive list. Some of the items on the list are easy and quick to start implementing. Others may take longer. All of them can and are implemented every day.

Wednesday, July 15, 2009

Three Easy Tools for People with Autism and Sensory Issues

Three Easy Tools for People with Autism Working on Sensory Issues

To learn about a few tools to reduce Sensory Integration in people who have Autism read this article all the way to the end. Specifically, I’ll cover the Earobic computer game, Therapeutic Horse riding, and using a trampoline. After you’re done with this article you should be able to reduce some sensory issues.

The Earobic computer game can be an important tool in helping with Sensory Integration. Specifically, it helps with auditory defensiveness. Families can use it everyday if needed. Reducing Sensory Issues will be easier if you have the tools at home whenever possible. This tool is easy to have at home. That brings us to Therapeutic Horse riding.

Therapeutic Horse riding is important when working on Sensory Integration. Therapeutic Horse riding can be used to reduce sensory issues. Private insurance or Medicaid may pay for Therapeutic Horse riding. It is good for Autism and ADHD. Finally using a trampoline is another technique to controlling Sensory Integration concerns. .

Using a trampoline can be another tool to reducing sensory issues for people with Autism. People with sensory issues will need access to a trampoline in order to start reducing sensory issues. It can be bought and used at home for your convenience. The trampoline may be large or a small exercise one. The trampoline will also provide exercise.

Reducing Sensory Integration is possible to understand. Initially you can work on these three techniques. These are three simple ways to reduce sensory issues.

Wednesday, July 8, 2009

Response to My Three Questions

I am so excited someone responded! As promised here is their answers in their entirety.

Thank you for visiting My answers follow.

Do you think people with autism need to be "fixed'?

No, not necessarily. Autism is a spectrum disorder and there are a variety of symptoms that are associated with autism. Some people have severe and painful GI symptoms and I believe those symptoms should be treated and the underlying problem “fixed.” Some people have self injurious behavior and those people should be helped. Some children are bullied and they deserve to understand bullying and be taught how to address it within the system.

Most of all, a diagnosis of autism can be difficult for the entire family and I think that all aspects of the family need to be healed. Sometimes the healing may involve an evolution of the parents so they learn to meet the child exactly where that child is and love the child for who s/he is and not who they want the child to be.

2. Do you think therapies for people who have autism are overpriced?

Mostly no. Caring for a child with autism is extraordinarily resource-intensive. It requires buckets full of time, energy, love, and money. I do not believe that speech therapists overcharge or occupational therapists overcharge or art therapists overcharge. In most cases supplements can be purchased for a reasonable price.

There are, however, treatment programs that are extraordinarily expensive. These include some ABA programs as well as some of the more intensive implementations of the DAN protocol. While it is hard for me to call them overpriced, I do think that parents should be very thoughtful when spending their precious resources. In my mind this means having a very specific and clear understanding of what the treatment goals are and how long the treatment should be continued before some progress is seen on the treatment goals. There is not time or money enough to do everything for every child. We also know that not all treatment approaches will work for every child. Therefore parents, therapists, physicians, and teachers need to have honest discussions about specific treatment goals and which treatments have the best odds of achieving those goals. There should also be honest discussion about when it is best to abandon a treatment because it is not advancing the child.

3. How do I buy all the equipment I am told is necessary?

What equipment? Who tells you what is necessary? This goes back to the answer to number 2 above. No parents should be put in a position of thinking that if they can’t afford a piece of equipment their child will not do well. Therapists, physicians, and teachers need to support the parent so that the parent feels s/he is healing the child with the resources that are available. Healing Thresholds is designed as a free resource to help parents sift through all of the different opinions and ask hard questions of the different members of the therapy team. When parents of newly diagnosed children write me asking similar questions, I point them to this page:
These are great questions. Thank you for giving me the opportunity to weigh in.

- Lara

Lara C. Pullen, Ph.D.
CEO and Founder
Connecting community and science to heal autism.

Sunday, July 5, 2009

Indespensible Tips When Raising Children With Autism, A Little Something Extra

 Use schedules. My children-all of them-knew what time we got up and what time we took a bath. My child with autism had visual schedules for her day. She also had a visual schedule for individual tasks. My child with asbergers understood time if I had a digital clock. She knew what time things were supposed to happen. This also gave us the opportunity to discuss what was happening if we were going to deviate from the schedule. We are a real live family and that happens sometimes.
 First look towards changing the environment when trying to work through a problem. Changing the environment is many times the easiest solution. We, the adults, are smarter than they are!
 Work with your child to learn to complete single steps. There is no point in frustrating you or them until they can “put this in the trash”.
 Sometime we have to get up and model the behavior or action we want to see. Words are not enough. Children on the autism spectrum need to see and feel what should happen.
 If you have siblings of children with autism a good rule of thumb is ‘Everyone has to do what they can do.’ This gives all of the children the opportunity to be part of the team, your family. Then we all accomplish the tasks necessary to family life.
 Children with autism and other disabilities do not seem to have the positive self talk others have. Remember and talk to them about past good accomplishments so they will remember. Celebrate all those little things!

A Little Something Extra to Think About…

Children with autism and other disabilities have short attention spans. It is one of those characteristics which seem to cross disabilities. Obsessive compulsive disorders and a tic disorder are two others. These also seem to be characteristics which show up in siblings and/or parents.

Friday, July 3, 2009

Autism and The Jelly Shoes

Being a mother of five children, I always had to watch our budget especially to afford some of the other things associated with a child with autism (or two children with autism ). One of the things we learned early on was to make use of hand me downs whether siblings or friends. One of my friends gave my daughter a whole grocery bag of Jelly Shoes, in every color. My 20 year old was excited. She was the only one with a foot small enough for these.

Of course the first pair my daughter chose was a bright red pair. Some of them had buckles. We have not bought shoes with buckles in years. As she tried to get them unbuckled she became frustrated. After fussing at the shoes for a few minutes she handed them to me. I asked if she wanted help and she said yes. This skill is a big improvement for her.

Then we went to getting the shoes on her feet. They slid on easily. Unfortunately there was that buckle again. She worked on it and worked on it. She got more and more frustrated. Finally she started talking to the shoes. She told them they were crazy. She started screaming at the shoes and cussing them. I sat across the room from her and watched.

Somewhere in the screaming phase I told her she needed to ask if she wanted help. This is a skill we have been working on for a long time and as you know a very hard skill for people who have autism in general. She ignored me!

After screaming at the shoes for awhile she started hitting them. I seriously considered making her let me help her at that point. I decided against it because she really was not hurting herself or any one else. She also was not damaging property. I did mention she could ask me for help again. She told me no! After much rolling around on the couch and screaming, she did get the buckle fastened.

Thinking about it, there is really so little she can control and SHE DID IT! She really was not doing anything that typical adults do not do every day. Get angry, start cussing, and start slapping things around.

Wednesday, July 1, 2009

Views of Autism

Yesterday I saw a notice from Ari Ne’eman from the AutisticSelfAdvocacy Network. He has a list I belong to at
which I highly recommend. The notice spoke of Dr. Eric London’s resignation from one of the AutismSpeaks committees. His letter spoke of decisions being made with out input from the scientific committee. This was the committee on which he was a member.

This brings up some interesting questions and thoughts.

1. Do you think people with autism need to be “fixed”?
As you may know from previous posts I have two daughters. One has autism and one has asbergers. No I do not see either one of my children as someone who needs to be fixed. On the other hand do I want to maximize all of my daughters’ experiences? You Betcha!

2. Do you think that therapies for people who have autism are over priced?
Sometimes. Parents of children with autism have to be very creative to keep their children engaged. I am not sure they should pay for every therapy that comes along. That is a really good way to break the budget for years to come, especially without investigating the free resources available. Then supplementing those resources with their own resources would be wiser.

3. How do I buy all the equipment I am told is necessary?
There are many ways to cut costs of equipment. Make some your self, borrow some, and explore agencies set up to help with the costs. Some parents even invest in one or the others education to learn how to do therapy themselves. I will make a separate post on this at a later date.

I would like to see other blogs on autism respond to these questions, particularly the first question. Knowing exactly what mindset people come from is so important in the area of autism and aspergers. So how about it?

Monday, June 29, 2009

Explaining Autism For Your Children

Some of the earliest conversations I can remember having with the two older boys about my middle daughter were about what to say to their friends. Being new to this myself I was surprised and concerned about their obvious discomfort as well as my own. Finally we came to the agreement they could tell their friends she was just a little slow. This seemed to satisfy them for quite awhile.

When my oldest, Sam, was about eight or nine he asked if they were going to ‘catch’ what she had. Of course I reassured him people did not catch a developmental delay from a sibling. I explained every once in awhile someone got sick and were left with a developmental delay. If you could have just seen the way he looked at me sideways out of the corner of his eyes when he asked. Many years later I learned these were perfectly normal reactions from older siblings.

Some younger siblings are in many ways less tolerant than older siblings. They grow up seeing you spend extra time tending to the older siblings needs. As they start to pass their sister’s abilities, they are very upset when she seems to be able to do things or act in ways they are not allowed. It is very difficult to explain the many choices they will have a head of them which she will not have. As one of the younger ones said just the other day, “That’s too long away. This is now!”

I have tried several things to help with this situation. One of them is books about children and books by children or teenagers. There are books about autism and there are books by the siblings of children with autism. Another newer idea is several videos on YouTube that have been made in recent years. Some of them are surprisingly good and challenging to other children/adolescents. I have found organizations, such as the Autism Society, willing to lend me videos from their libraries. Borrowing videos or books is good for the budget when possible. The videos and DVDs tend to be expensive so be sure to return them. All of these ideas work with your own children or children in your child’s class.

Sunday, June 14, 2009

Expert Parent on Autism

One of the things I have learned in my 20+ years raising children with autism spectrum disorders is that the parent is the expert. We as parents spend a lot of time going to one doctor or another. We go to a variety of therapists. We go to the education system for help. In all of those people no one knows your child better than you do.

Everyone seem to be able to describe all of your child’s deficits and weaknesses. But one person alone knows all of your child’s strengths—you. And of course it is building on these strengths which is going to give your child any independence and happiness in life. You as the parent will also be the person there the longest. Siblings come in a close second and have their own insights but you are there the longest. Specific knowledge of your child and the length of your exposure to autism make you an expert.

Saturday, June 13, 2009

Reminds Me of Raising A Child with Autism

I came across this poem again in some of my things. Even though it is written about a toddler it reminds me of raising a child with autism. I do not know who wrote it so let me know if you do. Enjoy!

The Rules of Toddler

If it is on, I must turn it off.
If it is off, I must turn it on.
If it is folded, I must unfold it.
If it is liquid, it must be shaken, then spilled.
If it is solid, it must be crumbled, chewed or smeared.
If it is high, it must be reached.
I it is shelved, it must be removed.
If it is pointed, it must be run with at top speed.
If it has leaves, they must be picked.
If it is plugged, it must be unplugged.
If it is not trash, it must be thrown away.
If it is in the trash, it must be removed, inspected, and thrown on the floor.
I it is closed, it must be opened.
If it does not open, it must be screamed at.
If it has drawers, they must be rifled.
If it is a pencil, it must write on the refrigerator, monitor, or table.
If it is full, it will be more interesting emptied.
If it is empty, it will be more interesting full.
If it is a pile of dirt, it must be laid upon.
If it is stroller, it must under no circumstances be ridden in without protest. It must be pushed instead.
If it has a flat surface, it must be banged upon.
If Mommy’s hands are full, I must be carried.
If Mommy is in a hurry and wants to carry me, I must walk alone.
If it is paper, it must be torn.
If it has buttons, they must be pressed.
If the volume is low, it must go high.
If it is toilet paper, it must be unrolled on the floor.
If it is a drawer, it must be pulled upon.
If it is a toothbrush, it must be inserted into my mouth.
If it has a faucet, it must be turned on at full force.
If it is a phone, I must talk to it.
If it is a bug, it must be swallowed.
If it doesn’t stay on my spoon, it must be dropped on the floor.
If it is not food, it must be tasted.
If it IS food, it must not be tasted.
If it is dry, it must be made wet with drool, milk, or toilet water.
If it is a car seat it must be protested with arched back.
If it is Mommy, it must be hugged.

Wednesday, June 10, 2009

Autism and The Bathtub

One of my daughters has a problem once or twice a year. During the night she does not make it to the bathroom fast enough, if at all. Last night was one of those nights. When I got up in the morning I had some cleaning up to do. As I am sitting on the edge of the tub I am reaching down and around the toilet to clean while talking.

My child wants to know if she is in trouble. I keep telling her no. In her wonderfully autistic way she keeps asking. We talk about the movie we saw last night. I am concentrating on keeping her calm and reach way too far. And I fall into the bathtub! Butt first! I am sitting there with my feet in the air and first I think, did I hurt anything? I am no small woman, but I think no.

Then I think with…did I mention…with my feet in the air, how am I going to get out of here? I certainly do not want to have to call the firemen to come get me! All this time I am trying to keep a young adult with autism, my child, calm. Well I finally figure out how to wiggle myself to the side and get on my knees and get out.

By now my daughter and I are laughing. What else am I to do? Another day in the life of a parent of a child with autism!

Sunday, June 7, 2009

Autism and Food Budgets

Many children with autism are picky eaters. I have one of those children. One of the techniques I learned was to keep a list of things she would eat, even if she only ate them occasionally.

I was surprised. There was variety in what she ate. The list helped me feel better that she did eat more than I thought she did. Using the list to routinely offer her food she only ate sometimes also helped keep her diet as varied as possible.

I also was able to keep better control of our food budget. I knew which items to watch for coupons and/or sales. There was less waste since I was very selective about new foods I wanted to introduce. With the help of my list, I also choose foods similar in taste or texture to what she already would eat.

Here is one of my children’s list:

Chicken Nuggets
Breakfast Burritos
Chicken and Sausage Gumbo with Rice
Cheese Nachos

Apple Juice
Orange Juice


Raw Vegetables with Ranch Dip

Whole Nuts


String Cheese

Any sweet type snack cake

Friday, June 5, 2009

Things I Wish I Knew In the Beginning

1. Get as much Speech Therapy as I could for my daughters, as often as I could get it.
2. Touch my children with autism as much as I could. I wish I knew to hold them around the middle with hand to skin touch. I would have stroked their cheeks and hands more. I would have given my children as much skin to skin contact as possible.
3. If you have insurance and can afford Speech Therapy, Occupational Therapy, and Physical Therapy, do it.
4. If you have Medicaid use it to get those same therapies.
5. Each state should have an entity that provides early intervention. In Louisiana it is called EarlySteps. Sometimes you can find it at the State Department of Education. Sometimes you can find it at the Department of Health and Hospitals. States provide some or all of the services free.
6. If your child is older than 3 check with your local department of education. They can provide specially designed instruction and all those therapies free.
7. Call your local United Way. Some United Ways provide monies for agencies to provide free services.
8. Contact your states Parent Training and Information Center to speak to other parents and ask about resources for therapy.
9. The Department of Health and Hospital in your state may have funds to help pay for therapies. It is sometimes located in the Office for Developmental Disabilities and Mental Health. In Louisiana it is in the Office for Citizens with Developmental Disabilities (OCDD).
10. Plan for your child, no matter how sever their disability, to have a job at better than minimum wage with benefits. A person needs a job to hang their day around.

Tuesday, June 2, 2009

Gift Cards Rewards For You Because of Autism

At the recent training in Austin, Texas, I ran into these people. The survey is simple and they will send you a gift card for your help. This is such an easy way to contribute to research about autism. Please consider filling out the survey if you have a child with autism. I also got both of my gift cards already!

From: "Liu, Ting"

You can fill out the survey on line by clicking the link below. A $10 gift card will be mailed to the parents upon completion of the survey. Look forward to hearing back from you. Thanks.

Ting Liu, Ph.D.
Assistant Professor
Department of Health, Physical Education, and Recreation
Texas State University-San Marcos
San Marcos, Texas 78666
Voice: 512-245-8259
Fax: 512-245-8678

Thursday, May 28, 2009

Accommodations Are Part of the Answer

Accommodations Are Part of the Answer

My 16 year old came in from school and didn’t say a word. Then at 4 o’clock she tells me the Algebra teacher would not let them use the calculator on the Final. The calculators were getting stolen. Every year we go through this. Everyone knows she has to use a calculator. It is critical for students with Aspergers to use their accommodations and to use them consistently. This is so important for their success in school and out of school.

Anyway I luckily got the principal at 4pm. He said to come in the first thing in the morning and she would be able to retake it with the calculator. The present principal was the vice principal and really worked with me when the 20 year old was at this high school. He is also more than helpful with the 16 year old. Building relationships before you need them is another technique which can save time and in the long run money.

Wednesday, May 27, 2009

Behavior Plan Again....

My 20 year old has started having unacceptable behavior again. She is trying to open the car door when the car is moving and having little tantrums. She doesn’t do it with me but does with the staff. I guess it is time to take out the behavior plan again and dust it off. It is always such a struggle to get the PCA’s (Personal Care Attendant) to do it all consistently and of course myself to do it too. Just a frustrating day….

Friday, May 22, 2009

Getting To the End...

14. A lot of sensory integration toys can be bought at the ‘Everything Is a Buck’ store or a similar store in your area for – a dollar. Toys that light up, make sounds, or have the ‘spaghetti’ feel to them. Do a little research on the internet and then go see what you can find with similar characteristics.

15. Talk to other families with an upbeat attitude about autism. Avoid parents who have the ‘it just gets worse mentality’. Autism is but one characteristic of your child.

Thursday, May 21, 2009

More of My List

I think I like lists...

10. Ball pits can be found online, but get well-reviewed ones.

11. Avoid autism toys that say therapy on it. Usually you can buy the same exact thing at a much cheaper price by surfing

12. Indoor hammocks, mini trampolines and rocking chairs could be purchased on cheap or gotten for free from

13. Homemade play dough can be used in sensory activities, and egg-less cookie dough can also be used if they put play dough in their mouth. It’s cheaper than therapy play dough and better for your child if they put it in their mouth.

Wednesday, May 20, 2009

And Again...

Yes, I know it is taking me a while to get this together. I will be more diligent about it...

6. Avoid surfing the Internet too much. There is a lot of misinformation on the web. Nothing you did or didn't do caused your child's autism. You are not to blame.

7. Use your library before deciding which books go into your home. Check with local disability organizations like Families Helping Families to see if they have free lending libraries. Some books are by parents whose children really had much milder autism than they realized and some books are very negative.

8. "1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders" by Veronica Zysk and Ellen Notbohm is great. This book is a surprisingly thin book for all the wealth of information it has. The book has loads of budget sensory therapy ideas and more.

9. If your child can read, you can spend hundreds of dollars on specially made social stories or
explains how to make them for free.

Sunday, April 19, 2009

Autism Therapy on a Budget continued

3. Play therapy can be a lot of fun and it doesn't have to cost a lot. Autism Games has a lot of low cost ideas at

4. Evaluate relatives for the characteristics needed to help. If grandma is healthy, loving and can handle your child, you could have grandmother trained to do therapy at home. Nieces and nephews might be glad to help, with your supervision of course. You might want to pay a little, if you can. Books like "Engaging Autism" can be a place to start.

5. There are inspirational interviews with famous Temple Grandin on for free. Just search her name.

Be patient this is a work in progress!

Saturday, April 18, 2009

Autism Therapy on a Budget

I can remember, when my child was diagnosed with autism, investigating all the therapies and options available for her. And boy, were some of them expensive! I was a single mom and I had to so the best I could with what I could get. I would have loved a list like this back then. There are a lot of suspicious ‘therapies’ out there, be careful. In one treatment, that cost $5,000, you were given activities which you could have gotten from a $13 sensory integration book and a booklet of $5 scratch and sniff stickers.

Although many people with autism will need lifelong care, they can work, marry, and lead normal lives on a variety of levels. There are even people with autism who are geniuses, but have problems with sensory pain which causes outbursts. The future of your child still lays open before them!

1. Use free school resources like early intervention classes. Use the school speech therapist or any other therapist your child needs. Some people have moved because the school cannot provide the speech therapy, physical therapy, and occupational therapy which their child needs.

2. ABA can be expensive but you can do matching games on your own and add that to a school based play intervention with speech therapy. You can mix this with other free and low cost therapies. You can make your own flash cards by searching the internet. Laminate the cards for wear and tear.

I will add to this list in the upcoming days...

Autism Therapy On A Budget Continued

And Again

More of My List

Getting To the End

Wednesday, April 15, 2009

Autism and Seasonal Affective Disorder (SAD)

The full spectrum lights seem to be helpful for people with Autism and Seasonal Affective Disorder. Some of the professionals working with the people who have autism call these lights ‘Seven Spectrum Frequency Lighting’. Unfortunately these lights are very expensive on the order of $15,000 for the set. A relatively inexpensive solution is ‘grow lights’ that would be used on a planetarium or fish tank. You might be able to buy one every so often until you had a bank of these to use in the mornings.

Friday, January 9, 2009

Other Local Blogs

My Penny Pile is in Texas.

Wednesday, January 7, 2009


Walmart in my area-Southwest Lousiana-does let you have overage with a coupon. They also have travel sizes of products in the pharmacy department. And will let you use a 'any' coupon on a travel size. I appreciate living in such a good area.


Target in my area-Southwest Louisiana-does not allow you to have overages with your coupons.

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