User:Luv4autism

A Mother's Experience

I am the mother of a child diagnosed with autism. My son was not identified with autism until the age of 9. Prior to this age, he was labeled as a "hyperactive child", "oppositional", and a child with attention deficit hyperactivity disorder (ADHD). I knew early on that there was something different about my child. He was more curious and "busy" than most of those we came in contact with at his same age and he didn't play with other children, he just played parallel to them. He had some "strange" behaviors which I couldn't explain. I kept after the doctors to figure out what we were dealing with here. I knew there was something we were missing. He was developing normally and all of his well child visits were positive. He excelled in many of his developmental goals. I thought I had a smart child. This was my first, and I had nothing else to compare to. My son was always "busy" and getting into things. He was very curious to learn how everything worked, climbing to the top of things such as the entertainment center and the refrigerator, throwing everything from his bedroom out the window onto the lawn, leaving the house and going outside through any door or window, and so on. My husband and I had to put locks on everything and secure large pieces of furniture to walls and floors to prevent falling. This seemed a bit excessive to us and we couldn't understand why everyone we knew didn't need to do these things to ensure the safety of their children. Of course, as a stay-at-home mom I began to question my parenting and wonder if I was doing something wrong. The first doctor I sought advice from told me I was the problem and I was a bad parent. You cannot imagine how many years this was stuck in my head. I believed him. As the parent of such a "busy" child, I found a new Pediatrician for my son and he began to see some of the things I was describing about my son when we went into the office. He would hide behind me or want me to cover his face with my hands so no one could see him. He climbed under my chair and braced himself refusing to come out. This was around the age of 7 and the doctor then decided he had ADHD. I accepted that because this was our doctor and he seemed to know what he was talking about. He also told me it was not my parenting and that he felt I was doing everything right. He suggested trying medication to help. I refused to give my 7-year-old medications for ADHD. I decided we would try some diet modifications and set stricter boundaries. Of course, the stricter boundaries were necessary, but the diet didn't seem to make any difference at all. At this time, I remember talking with a wonderful woman at my church who had an adult son with ADHD and she said he takes the medication and it helps him tremendously. She asked me, "If your son had diabetes wouldn't you give him insulin?" This changed my view of medication at this point. I was getting desperate to get some help at this point in time. My son was struggling in school, not sleeping, and his behavior just seemed to be getting more out of control. I could see he had a lot of anxiety around school and just getting him there was a daily struggle. I kept pushing for answers to help us understand more about what we were dealing with. Finally, when he was nine we were sent to a team of doctors, psychiatrists, nurses and social workers who did an entire work-up on my son. They came up with 3 new diagnoses which seemed to fit my son. He now was identified with Asperger's Syndrome, Anxiety and Depression. They suggested medication with minimal side-effects and setting up an Individual Education Plan (IEP) meeting with his school to design a plan to help him be more successful in school. Now I had some concrete answers and could work with this. Knowing was a huge relief. At this time I began to do tons of research to find out all I could about Autism Spectrum Disorders and Asperger's Syndrome. I also began to search for resources to help us any way possible. There were no agencies including the school who were going to come forward and tell me what was available to us. Obviously, that would cost them money. So I had to go looking and be an advocate for my child. I asked everyone I met, searched the internet, called different agencies all to educate myself on what was available and how to set up services for my child. Another important thing I did was found an internet support group. At the time when my son was diagnosed, there was not much being said yet in our area about Autism. No one seemed to understand what it was. I had to educate the school, the neighbors, parents of other children my son came in contact with and so on. This was a huge heartache for me. I felt so alone. I would suggest to anyone with a child who has autism to go and find someone else who is going through the same thing or who has gone through it. I cannot tell you how much it meant to me when I finally talked with others who knew my pain and struggle. It helps to share stories and give understanding as well as getting the same in return. Parents need support groups to encourage them that they are not alone and that they are doing all they can to love and raise their amazing children with autism. It isn't easy and sharing that with someone else is so important. Be sure to take time for yourself. Find a caregiver who can give you a break once in a while. Some states provide Respite services with qualified caregivers who will care for your child while you take some time to relax and refresh. Check with your state agencies and learn if these services are available for you. Be an advocate for your child. No one else can speak up for your child as you can. My son is older now, in high school, still having some struggles especially with peer interactions, but he is doing well and becoming more independent. He will soon have his driver's license and applying to college. It is amazing how quickly they grow up and you begin to feel they don't need you anymore. I am finding it especially hard to let go now, feeling he needs me to speak and do for him when he really doesn't need me in the same way that he once did. This is surely a success story. Hang in there, you can make it too.