Getting to Know Asperger's Syndrome

Eight years ago I had no idea what Asperger's Syndrome was or that there was anything called an Autism Spectrum. All I knew was that I was pregnant and something didn't feel right. My baby didn't move as much as my first child did, and when he was born it wasn't any better. He would lay in his crib without a noise and although I was relieved at having such an "easy baby", I was scared. Then there were the feedings where his vomiting was so bad that I would sit in the floor on a towel to breastfeed him. The doctor did tests for reflux, which showed nothing, and I was told to stop breastfeeding. To think that my breastmilk was making him sick was devastating.

So on we went, trying to ignore the growing panic that something was wrong with our baby. He was late for all major milestones and every time I asked his doctor about it I was told excuse after excuse, all of which seemed to blame me somehow: "You can't compare your children, each one is different", "He's just a lazy baby", "He isn't doing as much because you don't have as much time for him as you had when you had your first child." Eventually, I fell for the bait and started using these reasons myself, feeling that the doctor was a professional he must be right.

At one and a half Boston still hadn't started walking and he still seemed overly flexible to me. He would still laugh if you touched his toes to his nose like a six month old. The doctor we had at the time didn't seem to notice this, even when I inquired about the delay in his walking. At twenty-two months, my son finally started walking and I was relieved. I told myself he would be fine. But it wasn't fine, he could walk but he fell so often his legs stayed bruised. Even at two and three years of age his walking was still extremely clumsy. He wasn't learning colors or numbers like other kids his age, he wouldn't potty train and I had this little voice in my head that said I was a bad mom because he didn't seem interested in hugging or cuddling me at all.

Finally, some hope came when his doctor retired and we were forced to go to a new one. This new doctor had insisted on her new patients getting a well exam from her so she could get to know their situation. As she started to examine Boston I saw her lift his arms and drop them. Not surprising to me, they fell to his side like dead weight. She then turned to me and asked about his milestones. I started to tell her all of it as the panic came into my voice and I had to hold back tears all my fears poured out of my mouth and by the end of the appointment we had a referral to a developmental specialist at Vanderbilt Children's Hospital and a wonderful doctor that continues to really listen to all my concerns.

The next few months were a blur of doctor appointments, blood work, and research. I pulled all the medical files on my son up to that point, including my pregnancy. I looked through everything. If I didn't know what something was, I looked it up. I searched the net for anything resembling the problems we were having. I was scared to death when they tested, and in some cases retested, him for things like muscular dystrophy and leukemia. I sobbed when I got the first medical report. It was so impersonal, yet it was my son they were talking about in such technical medical terms. The very terms that terrified me then have become a regular part of my vocabulary; hypotonia, developmental delay, oppositional behavior...

During this time we were able to get him enrolled in a developmental pre-k program, physical, and occupational therapies. I was so overwhelmed to finally be getting help that I cried on when the therapy office secretary gave me the appointment dates. Finally, my son was getting help, now if we could only find out what was causing all the problems. The next three years were more and more doctors appointments each more disappointing than the last. The research I did online led me to actually ask one neurologist about the possibility of Autism at which time I was told, "No your child makes eye contact he couldn't have an Autism Spectrum Disorder". Yet another neurologist looked me in the eyes, in front of my son and told me that I should "...accept him the way he is." I was so angry I honestly wanted to hit him. I got to the point where I would give up for a few months and then I would hear about another doctor or another therapy and start all over again meanwhile, Boston was improving dramatically.

After all the fighting and upset, IEP meetings and doctors visits, I wised up. I started keeping a notebook with his complete medical history, school information, a timeline of milestones, and a list of all things about him I thought were a little abnormal. Some of the things on my list; an obsession with his shoe laces being tied, refusing to eat anything unless in was cold, noticing every little sound around him, having a take you or leave you attitude, not sleeping through the night, apparent discomfort in crowded places, inability to do simple puzzles, and often having meltdown temper tantrums over seemingly simple things. I noticed a totally different attitude from the doctors when I walked in prepared to answer their questions or possibly hit them upside the head with my three inch binder.

One such doctor that took me seriously, and actually listened, was the third and final neurologist to see Boston. He started him on medications that actually helped and really was concerned for my son. This past spring he told me he even had a diagnosis, something I had almost gave up on. Asperger's Syndrome fit him to a tee. Again I went into research mode I had to have all the latest information. I was on a mission to get to know Asperger's. I went to meetings, I scoured the internet, I read books, and talked to other parents. Then one day I was watching my son play and I realized something. I already know Asperger's. I know it's funny, and quirky, and frustrating, scary, and irritating, and stressful. I have known it for eight years. I knew it before the professionals did. I lived with it and cared for it. And because it is part of my son I have even loved it.