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?

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