Living with Autism Lessons to Learn Part II

Part Four of a Five-Post Series about one woman’s experiences with her son who has autism.

The steps to treat a child with autism are stressful and overwhelming… what to do, what not to do, who to talk to, where to go…. Those questions are endless, so just take it step by step and day by day and no further. It is sort of how I live my life… if you focus on what you can handle today and only today, things seem manageable. If I focused on my son Tommy’s next 20 years, the overwhelming magnitude could take me out at the knees. Here are some more tips to help you on your day-by-day journey.

5. Run all the necessary tests fiscally possible that will provide a blueprint to your child. Testing is getting more and more advanced, now providing tools to understand chromosomal makeup, allergies, toxins, vitamin deficiencies, etc. I am often surprised by the number of parents who do not know about medical testing. The tests proved crucial for Tommy. I learned he had a chromosomal deficiency in his methylation pathway which meant 1) His body could not break down toxins well, 2) He was off the charts in lead, arsenic, antimony and mercury, 3) His liver was stressed, and 4) He had some major vitamin deficiencies.

These tests provided a guidebook for me to make some personal and financial decisions about which therapies might work and others might be fruitless.

6. Investigate your rights. Know the law and know what your child deserves under that law from the school district, regional center, and your medical insurance. Each avenue is not easy, but if you understand it, you know what to fight for. The people in charge will know you know the rules. Go in educated from the beginning and never, ever take NO even if it means hiring an advocate or lawyer to help you.

There are so many children right now in need of services, and because of that the system is suffering which ultimately means our children are suffering. I have watched Tommy’s therapeutic preschool increase from 3 kids to 18 kids between November and June – just kids in 3-4-year-old class. Be strong in your approach and know what you are seeking, and have the medical documentation to back it up. Keep track of your child’s progress and if he is meeting goals. Know when to intervene and ask for additional services, and when your child is falling short of the critical steps in therapy.

7. Find social groups, set up playdates, join sports teams. Get these kids with other kids even if it means just going to the local park. I was fortunate to have the “perfect social therapist” in Tommy’s brother Mikey who was the first one to truly connect with him. As a parent, I think one of my original fears was, “Will he ever have friends?” I think every parent with a child on the spectrum has had that thought one time or another. Since social issues are such a cornerstone to the disease, this step is crucial during recovery. Social circumstances are often not only difficult for these children: parents struggle, too. Although these situations are hard and they tug at the heart strings, the more the child with autism works at socialization, the more hope there is that one day another child will say, “Hi, what’s your name?” and your child will look up, make eye contact, smile, and even one day say his name!

8. Take it one day at a time. Someone once told me, “Autism is not a sprint. It is a marathon.” You are the coach. Keep your team on track and stay positive. But don’t forget to take a moment out for yourself and breathe! Ask for help when you need it. This is one of the hardest steps for us as parents: realizing you can’t do it all is often traumatic for us since we harbor such innate fears and an excruciating need to protect our children at any cost. A step away for a moment or two will not detour them off course. It actually just might help because your child with autism will often pick up on the stress and exhaustion. Taking a break and returning rejuvenated and determined to fight will give your child the continued determination to fight, too!

Do you have any practical tips that helped you in your journey? We all learn from each other, so share what has helped you and your family keep up the fight.

Published on: July 03, 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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