When I was pregnant with Ryan it was a very complicated pregnancy. As my OBGYN put it, he could have written a book on my pregnancy alone. I had every text book complication in one pregnancy.
Ryan came into this world sickly. He had chronic ear aches beginning at 10-days old, and things continued from there. I think I began to see he was different before he turned 2. Ryan started walking at 11 months old, talking before he was 1, and fully potty trained by the time he was 18 months old. That was back in the day when disposable diapers just came out, and re-sealable tabs were not thought of. So when a diaper tab was pulled away, it didn't re-stick. I remember Ryan's nanny calling me at work to say I needed to be training pants because Ryan wanted to used the potty and she was wasting diapers. So I bought a ton of training pants, and brought them home. He fought with his dad and I when we tried to at least have him sleep in the diapers at night until we were sure he would not have an accident. He never did unless he was sick. Then he panicked. We were blessed!
When Ryan reached 2, he started having little freakouts which we attributed to terrible 2's and tantrums. It never occured to me that he was not having tantrums, but it could be autism. I was a young mom, and my child seemed to be progressing normally. Actually, a little faster than most babies. Then he went to spend a couple of weeks with my mom and dad, and I remember my mom saying, "I feel like I have this little adult following me around." She said he spoke in full sentences and sounded so grown up. She also ran into problems when she would wash his clothes. He freaked out, and would sit with his suitcase in front of the washer and dryer until his clothes were done. My mom worried about this attachment he had to his things. I guess because I was used to his ways, it was normal to me.
When Ryan turned 3, I had remarried and we had moved away from our family due to my new husband's job. Ryan began to have these outbursts saying, "I'm scared - I'm scared!" He would do this when we were not even around him or in close proximity of him. Well wouldn't you know we would have that one neighbor in our apartment complex who heard Ryan screaming this one time. Naturally this person called the Department of Children and Families on us, and reported us for abuse. My first instinct was panic and I screamed at the worker over the phone that this was crazy! I would never hurt my child. It was an aunt of mine who talked to me, calmed me down, and told me to cooperate with them. I had nothing to hide. So I called back, apologized profusely, and scheduled at time for them to come out to our home. Of couse they checked out our apartment, going through it with a fine tooth comb. The worker spoke to Ryan in front of us and away from us. She checked him for bruises and marks on his body. My then husband and I were sitting in our living room, when Ryan started screaming, "I'm scared - I'm scared!" It was a funny scene to watch this case worker come running down the hall screaming, "I didn't do anything, I didn't touch him!" We were telling her that is just what he does. She sat down and said, your home is spotless. It is child proofed, you have healthy food to eat, and Ryan's room and toys are age appropriate. She says, the allegations are unfounded. Then she suggested that we seek help for Ryan. We took him to therapy and we enrolled in parenting courses. We were told Ryan was just hyper, and he was prescribed Ritalin. Right away we noticed Ryan was having a negative reaction and nervous ticks. I asked that he be removed from the Ritalin, and the therapist he was treating with refused. I consulted with his Pediatrician who sent us to a child psychologist in a neighboring town that was much bigger than the one we lived in. After extensive testing, the doctor said that Ryan was not hyper, and he should have never been put on Ritalin. It took 2 types of medicines to get Ryan off the Ritalin. It was done in stages. However, no one ever suggested that Ryan might be autistic.
Ryan was diagnosed with bi-polar in his teens. There was an extensive family history, and it made sense. He fit every characteristic for bi-polar. He also suffered from panic/anxiety attacks, and various phobias. Ryan was not a behavorial problem. He had learning disabilities, but always did very well in school. When Ryan was in high school his therapist suggested that he fit the criteria for Asperger's Syndrome. She wrote a letter to his psychiatrist, asking that they be able to work together for Ryan's sake. His psychiatrist ignored it. After I read and researched Asperger's, I realized that Ryan did in fact have it, but how was I going to get a formal diagnosis without his doctors being on board. Ryan went on to graduate from high school with a 3.8 GPA. He went to our local college for the next year and a half. That was until his physical illnesses became too much and his panic/anxiety attacks became worse because he was sick all the time. It was at this time that we applied for disability. The medical bills had taken their toll on me, and literally broke the bank. I knew I could not keep going on like this. It took us 3 years and a heartfelt e-mail to the Governor and a Congressman to get help. We prevailed after an administrative hearing, and Ryan was able to receive disability. The Judge talked to Ryan in the presence of our attorney. I chose to sit outside and wait for my turn. When it was my turn, Ryan was not present. The Judge commended me on how I parented Ryan, and said that Ryan was very lucky to have me fighting for him. He asked me why I thought Ryan had Asperger's Syndrome and why I thought Ryan should be on disability. I said your Honor, when you have a child you only want the best for them. I saw my son go from being an active child with friends, to becoming a recluse. I am his only friend. I have this wonderful young man who is broken and I can't fix him. I told him that I had done everything within my means to help him, but I needed help. The Judge stopped me. He said, Ms. Parish, I see the love you have for your child. He said he had read every e-mail and letter I had written. He said you have done a wonderful job. He said he had worked with children with autism and on the autism spectrum. He said he did not need an official diagnosis to tell him Ryan had Asperger's, but he knew that I would need an official diagnosis to get Ryan the help he needed. He said I am approving Ryan's disability. He said take advantage of everything you can to help your son succeed. Well that is easier said than done. There is not a lot of help out there for adults with Asperger's. Ryan was officially diagnosed approximately 5 years ago. He was 22. I fight everyday to get him help. Insurance won't cover therapy for the autism and those on the spectrum. It happens in some states. Just not Florida.
This blog is our way of sharing and telling our stories, and we are hoping to raise awareness too. I wanted to give an earlier look so that you would see where we are today. It's an everyday battle, but I would not trade my life or Ryan's for anything else. Ryan will tell me from time to time, "mom, I know you wish you had a normal child." I just say, what is normal? Our life is normal for us. That is true. What is normal today? It can be whatever we make it. Our life is normal for us.
Peace!
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