I love sharing my stories about my amazing son, Billy, who was diagnosed with moderate/severe autism & sensory processing disorder. But, I feel like there are so many other stories out there, other than mine, that need to be shared. So, every month I will be sharing a wonderful blog post from another parent of a child with Autism or someone who is Autistic themselves. I hope you all enjoy reading others stories as much as I do!
This months story comes from the wonderful Marci W. She currently writes a blog called What’s For Dinner Moms? You can check out her blog here. Her son was almost 5 when he was finally diagnosed. Thanks for sharing your story with us, Marci! Here is her story….
My son was very different from his older sister right from the start. She had health problems and was in and out of doctors offices and the hospital over 175 days in her first year. It was tough and it took me almost three years to decide I had enough in me to do it again and could care for another child. Time was getting short as we were getting older so it was a now or never decision for us on having a second child.
Weighing in at 10 pounds 11 ounces (no gestational diabetes) he was induced one week early because the doctors were worried after all my daughter’s health problems that they wanted to be prepared should anything be wrong. My son was 30 minutes from being a C-section when he finally burst into the world. No one could understand why he was taking so long. He was “under 9 lbs.” according to all the ultrasounds and measurements (2 a week for 5 weeks) that we were having. They were very off in their measurements!
There were no health problems and he was declared a healthy baby. A huge sigh of relief for all of us. All of the nurses stopped by to see the “big, talking baby.” They kept telling us they had never seen anything like him. He was babbling non-stop right from the womb. Everyone kept telling us babies don’t do that. Well, he was.
He was born in the Spring and we didn’t have air conditioning. All he wanted was to be covered in a little tea towel and placed in front of this big industrial sized fan (on high) with nothing but a diaper and then he would sleep. Otherwise, he was awake all the time. His food sensitivities started right from the beginning. Predigested, non-milk, non-soy formula or”Liquid Gold” as it was called in our house. We were spending almost $300 a month on formula because he could not breastfeed. Even then, he was still throwing up at every turn.
He walked early, talked early and definitely had a mind of his own. By one-year-old he was using words that made him sound, I guess, proper would be a good term. By 2 1/2 he had taught himself to read. We realized one day when we were in the doctor’s office and he picked up a book he had never seen before and started reading it to me. He had some trouble with the names but the rest of the simple words he had down. I went home and asked, “Did you know he could read?” Neither of us knew it but within a month he was reading the cursive signs in stores.
We were excited over all his advancements but something was still not quite right with him. He was stubborn and wouldn’t, or couldn’t, follow simple directions. He would bolt into the road or away from us at any given moment. He didn’t like playing with other children preferring the company of adults and he refused to use silverware, hold a crayon or scissors. He would scream and hit at odd moments falling to the ground and refusing to be calmed. If something happened out of a very specific order he would scream for 2,3, or 4 hours at a time. Every time we went to the doctor’s office we mentioned all these behaviors and how difficult things were in our home. We were told by doctors and family he needs more structure, he’s a boy, he needs a stronger parent, he needs a man in his life …. They had an explanation for everything.
He was exhausting. He demanded all our attention. If he didn’t get what he wanted or things didn’t go his way he would scream for hours on end. Biting, hitting and kicking began around 18 months old. He began banging his head with his hands, boards and books. Still no one would listen to us. I was just a bad, over protective mother and I felt every moment of those judgements from other parents, family and friends. When parents move away from you at the playground or park because your child is screaming I started to shy away from public places unless I was with parents who understood. We pulled away from friends and family who couldn’t understand what we were really going through. They didn’t want to be around him and we understood but it made us sad and a bit angry. I would sit and cry at night because I didn’t know what more I could do for him. I tried to be a good mother but I felt like I was failing him at every turn. I would pray every single night, “Please God, make me a better mother for him.”
His sister was suffering too. She would get upset because if he was having a tantrum (I didn’t even know the word meltdown yet) we had to leave places or couldn’t go somewhere. I remember one night in a restaurant he was taken out of the restaurant kicking and screaming. My daughter and I stayed behind for dinner because we didn’t want to have her miss out on something again because of her brother. She was three years older than her brother was but she was dealing with our adult issues that we were trying our best to shield her from but we didn’t even understand what was happening.
Finally he went to three-year-old preschool 4 hours 2 days a week. He did well. We got notes home that he can’t cut with scissors, hold a crayon or silverware but these things should come with practice at home. They didn’t know what home was like. We would try to get him to do these things but he would throw them or fall down on the floor screaming We dreaded going to every school conference fearful of what they were going to tell us because we kept waiting for them to mention the melt downs or tantrums. Once-in-awhile they would but for the most part all they said was he is a bit immature for his age but his language, math and reading skills are very advanced for his age so there was probably some asynchronous development.
It was his four-year-old preschool teacher that said, “I don’t know what it is but I would like to have him tested just to get a better picture.” I went with him as they tested his vocabulary, math, speech, OT and PT skills. The one teacher testing him looked at me and said, “I have never had a four year-old test higher than this. I didn’t bring the next books for the test.” The OT, PT and speech teachers asked about how he was at home. They nodded and smiled as I told them the truth. I was praying they would have an answer or at least some suggestions for us.
They suggested we see a Child Psychologist for the best answer. So, off we went. We had to wait 8 months for an appointment but I asked to be put on a waiting list for any cancellations. Three months later they called with a cancellation. I sat in this little office while my son played with the psychologist I filled out books and books of questions about his behavior at home and at school. The Child Psychologist asked if I had any questions and I started to cry. “I am afraid you are going to tell me nothing is wrong and I don’t know what I will do. We can’t live like this much longer.”
Three hours later we had a diagnosis of Autism (most likely Asperger’s Syndrome but he was borderline between the two) and possibly ADHD. I felt some relief as he handed me a pamphlet and said, “Good luck.” My son was almost 5 years old and finally diagnosed with Autism.
When I think back over all the time he lost because no one really listened to what was going on I get upset. My son lost years that he could have been getting early intervention services because everyone thought it was our parenting or he was spoiled. This was 8 years ago before there was an explosion of information on sensory issues, Autism, Asperger’s Syndrome and other issues.
But, this is still happening. I hear of waiting times up to a year for parents seeking help for their children. Some parents don’t know where to turn or even that there truly is an issue because it has been so ingrained in them that it is their fault their child behaves in a certain way that they don’t even ask for help or admit that there is a problem. Getting help and a diagnosis should not be so difficult. With numbers suggesting 1 in 42 boys being diagnosed with autism and 1 in 68 children overall schools and doctors need to be aware and better at helping parents find the help they need.