Getting a diagnosis of autism for your child is probably one of the hardest things a parent can go through. Autism is a silent creeper. Some families have pregnancies and deliveries that were complication free and for the most part maybe the first 6 to 12 months seemed to be pretty “normal”. Then one day you sit at a park or at church or at a playgroup and you suddenly realize that your child isn’t really doing anything any of the other kids are doing. It is a very scary moment it is almost a moment that takes your breath away, because as a parent you want to immediately fix it, you want to save your child the heartache of not “fitting in”. My situation was a little different and I am going to tell you what it felt like to get a diagnosis from my end of being an autistic parent. I had a very difficult pregnancy, a pregnancy that ended in a medical helicopter flight to another hospital than my own and resulted in my son being born 5 ½ weeks early, he remained in the hospital for 14 days after delivery. My son once home began to develop at a pretty “normal” pace or so I thought. He did not walk until 15 months he said some words, but at about 15 months he lost every last word he ever had. As I look at pictures now I see him staring off into space he was lost. I took him to a local play group at about 15 months of age. When I left him in the room with the other children I noticed how the majority of children the same age as him were doing things he was not doing. I felt a little sad and panic in my heart. My doctors told us that he was just premature and that he would progress, he had recurring ear infections and the language loss was blamed on that, we were referred to an ENT doctor for tubes. A funny thing the tubes did not bring the language back, it helped with the ear infections but did not bring the language back. I called early intervention on my own and requested they give him a screening. He was referred for speech and developmental therapy. It is a very hard thing to know in your heart that there is something very wrong with your child and you can't get anyone to listen to your concerns. I finally got a referral to Iowa City for a screening for autism. We left with the paper work that told us there was nothing wrong with my child who was not saying any words at over 18 months and had major sensory issues. The rest of my family was relieved that our son did not have autism I was kind of sick feeling because quite honestly I thought Iowa City was full of it! I remember getting into an argument with my husband and the words he said to me were “Why do you question them, it is like you want something to be wrong with him.” I know he didn’t mean it and he apologized but as a mother in my heart I knew there was something wrong and I knew it was autism I just needed someone else to realize it and confirm my suspicions. I remember my child sitting on my grandmother’s floor and lining the patterns on a throw rug up turning the blanket over and over again and again. I can remember going to Kmart one time and seeing my aunt and grandma at Kmart who my son saw on a regular basis and he screamed and cried as if he did not know who they were. I now realize that they were not in the normal place that he regularly saw them at so he did not recognize or know who they were. I finally confided in my doctor that I feared my son had autism and as I researched doctors I found children’s memorial in Chicago she referred us and we went. Unfortunately our first appointment was a wash because my son came down with rotavirus and had to be hospitalized. Having a child with autism hospitalized is a whole story in itself, it is very difficult. Our visit to Children’s Memorial was supposed to be three separate visits with a team who would evaluate him. By the second visit they informed us there was no need for a third visit they were most certain that our child had autism. I remember feeling a flood of relief wash over me; we now know what we are dealing with now we have to do what we can to help him. When we returned to our car for our three hour ride home, I crumbled. I cried and sobbed and wondered about the what ifs. What if I hadn’t been so sick in my pregnancy?, what if I did something wrong?. I think all family members of children with autism go through the what if’s. But I think mothers beat ourselves up the most, we carried that child and nurtured that child and somehow we feel it was our fault. My big thing was what if it was because we did not get to bring him home right away. I was devastated, I basically felt lost. I loved my child but I mourned this child that was “suppose to be”. I took our diagnoses with the determination to help my son succeed and progress. I became this tiger mom I wanted to protect my son from the stares, when he had a huge meltdown, I wanted to protect him from the other kids who would give him funny looks when he looked at the lights at walmart and laughed. My son progressed. He is a 10 year old boy with a sense of humor, Mapquest Genius, In a regular ed class with some pull out special education, And most importantly he is very verbal. I would be lying if I told you that I don’t still get upset from time to time. But the good outweighs the bad. I believe that if you expect more from your children you get more. We expect more from our son and I just know we will get more than we could ever imagine.
