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.

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.

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.

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!

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

Sprite

Raw Vegetables with Ranch Dip

Whole Nuts

Cereal

Yogurt
Milk
String Cheese

Any sweet type snack cake

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.

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!
Thanks,
Mylinda

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.
http://www.surveymonkey.com/s.aspx?sm=2V3cpuKQaxlbRkmAXJRO_2bA_3d_3d


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
Email: tingliu@txstate.edu
Website: http://www.hper.txstate.edu/People/Faculty-Web-Pages/Ting-Liu.html