Living with Autism Lessons to Learn Part I

Part Three of a Five-Post Series about one woman’s experiences with her son who is living with autism.

One of the major problems with autism – and there are many for parents – is that there is no guidebook. There is no tour guide. There is no manual. There is not one doctor. There is not one method. You alone have to figure out what is going to work best for your child.

My journey with my son Tommy has not been easy, but with the right tools you can learn the resources that are available that can help you figure out the puzzle of your child. You can become empowered with knowledge to help your family fight the battle along with the doctors and the therapists and learn to ask the questions that will ultimately help to figure out the puzzle. The mass amounts of information are overwhelming at first, but with time and a deeper understanding of the facets of the disease, you will start to see the important pieces that will deeply affect your child’s future.

Here are a few things that have helped our family in our journey:

1. Research, Research, Research. Before you start anything, you have to understand autism – really understand it. This leads to countless sleepless nights and many, many hours on the internet. You have to understand the latest therapies, biomedical treatments and research, current studies, genetic predispositions, etc. You need to continually update yourself since the landscape for this disease is ever changing. Spend time learning all the treatments including the main therapies such as speech therapy, occupational therapy, and Applied Behavioral Analysis (ABA) as well as some of the alternative therapeutic and medical therapies such as Relationship Development Intervention (RDI), music therapy, acupuncture, cranial osteopathy, hyperbaric oxygen treatments, homeopathic medicine, etc. Your research may hold the puzzle pieces you are looking for.

2. Find a doctor. You need someone who understands the disease and believes in the hope of recovery. Your doctor may be a developmental pediatrician, developmental psychologist, biomedical doctor, or all of the above if you can afford it. If your first choice does not believe in that hope, move on to the next. You need your doctor to support a belief that these kids can be treated and given a better life. We are not talking about a cure – we are talking about finding the answers that will be the ticket to unlocking the door.

With Tommy, I needed to address his disease both medically and therapeutically. One cannot work without the other. If the body is not up to par, the therapies are only going to work so well. If the body is being healed, your child has to learn new skills. As you start to understand the medical makeup of your child, you will understand why certain therapies have a greater impact than others. The teachers and therapists will start to notice the difference, too!

3. Work with your doctors to outline education plans as well as a medical approach every six to twelve months. The educational therapies such as therapeutic preschool, occupational therapy, speech therapy, adapted physical education, and ABA will have to be proposed to your local school system that should provide an Individual Education Plan (IEP) with specific goals for your child for the year. This plan will have to be updated. You need an established medical plan that provides a course of action and the priority of each medical treatment and test. With a plan like this for your child, you will recognize the steps to put your child on the path to recovery.

4. Contact all your local Autism charities and the national organizations such as Talk About Curing Autism (TACA), Autism Speaks, and The Help Group. Each provided me with different resources and information that proved incredibly helpful. They also provide resources and networks of families who are going through exactly what you are along with information on the latest medical news, financial grants, fundraisers, etc. Find an organization with a mission you believe in and find a support group through that program. The key is to find other parents like you who are also going through the process. And don’t forget that other moms are the greatest source of information.

Check back tomorrow for more tips to help your family on their journey.

Published on: July 02, 2008
About the Author
Photo of Kelly Austing

Kelly is a 36-year-old single mother of twin 4-year-old boys, Mikey and Tommy. In 2001 Kelly landed her dream job as an event producer at In Style, a leading fashion and lifestyle magazine.

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