Part one of a two-part essay by Christine MacPherson.
Autism is a neurodevelopmental disorder characterized by social impairments, cognitive impairments, communication difficulties, and repetitive behaviors. Autism affects each person in different ways and can range from very mild to very severe and occur in all ethnic, socioeconomic and age groups. Males are four times more likely to have autism than females. Some children with autism appear normal before age 1 or 2 and then suddenly “regress” and lose language or social skills they had previously gained. Autism can be associated with intellectual disability, difficulties in motor coordination and attention and physical issues such as sleep and gastrointestinal disturbances.
Autism Affects 1 in 88 Children in the USA, this is the story of my 1 in 88.
by Christine MacPherson
On February 18, 2007 my life changed in the most amazing way, I became a Mommy to our beautiful little boy. My husband and I planned so carefully for our sweet son. The nine months before he was born we spent hours and hours talking about him every day. We would have fun trying to imagine who he would look like and whose personality he would have. One thing we knew for sure is that he would be beautiful and he would be smart because we are serious about education. We would debate sending him to a Catholic school or Public school. Mikey wasn’t even born yet and my husband would try to convince me that our son was going to play football in school (I was not having it though!). It was the most amazing time in our lives. We were filled with so much hope and excitement for our future with Mikey. I envisioned a little dark-haired boy running up to me and saying “Mommy”. I anticipated spending weekends watching him and my husband play football together. When Michael Patrick (Mikey) was born, our dream came true. Like most parents, we were on cloud nine! I remember vividly dancing in my living room with my baby boy to Donald Duck & Daisy’s rendition of a Bicycle Built for Two. I held him close, and imagined how one day we would dance together at his wedding.
In that moment life was perfect.
On January 30, 2009, my life changed forever. All it took was one little word. It was a word I never dreamed of, never wanted, never planned. AUTISM. In that moment, with that one word, every dream we had for our son, every hope, every plan, was shattered. Our discussions of Catholic school and football teams were replaced with discussions of therapists and doctors. Questions of whose personality would he have were replaced by questions of will he ever speak? Will he ever be able to function independently? Will I ever hear him say Mommy? Will he ever play ball with Daddy? Will he get married? Will we need to care for him forever?
For months my husband and I took turns crying. We mourned all of the hopes and dreams we had for our son. How could this happen to our beautiful, sweet, innocent boy? I cried endless tears. The cries were unlike any I have ever experienced before. They came from the pit of my stomach and took over my whole body. My legs became weak. My body shook as if it were trying to release a foreign substance. I had no control. It felt like we were living in a bad dream. We were displaced and living a life that wasn’t ours. This was not the life we had planned for.
I didn’t want to feel any kind of happiness. I didn’t want to have any fun. How could I be happy when this was happening to my son? I started to wear sweat suits all the time. I didn’t do my hair. I didn’t put on makeup. I felt guilty doing anything nice for myself while my child’s future was in jeopardy. I felt a strange disconnect, like I didn’t know who my son was and he became a different child. My husband came home from work one day and found me crying, yet again. He held me and said, “Get it all out because this is it, we aren’t crying anymore. Look at him. He is perfect.” I looked at Mikey and he looked back at me, his mouth wide open offering me a sweet smile. He was innocent. He did not understand what was going on. I saw my baby again. He was perfect, he was still the same sweet, perfect boy he was before that ugly word, AUTISM, came into our lives.
I made a decision to dwell in a place of hope and love. I stopped thinking too far into the future. I began to live in the moment. I celebrated every single accomplishment Mikey made. I stopped focusing on what he wasn’t doing. The decision to be happy is not an easy one, and I work at it every day. There are some very difficult days. Mikey also suffers from gastrointestinal issues. On the days when his stomach is upset, he will cry all day in pain. He can’t tell us what he is feeling. He can’t tell us what hurts. It takes every bit of strength and faith I have to hold myself together. I sometimes want to curl into a ball and cry too. Many times, people who experience a life altering event like we did allow themselves to be overcome with anger, resentment, self-pity and misery. I have felt some of these feelings but I refuse to have that energy surround my son. I freed myself from negative feelings about his diagnosis a long time ago. I never want Mikey to feel that he is not good enough or that he did something wrong. I want him to be confident. I want him to know and feel how much we love him.
I choose not to dwell in an ugly place. I have a beautiful son. Mikey is always smiling at me. He is always kissing and hugging me. Mikey is unaware of all the things that he will have to learn.
He is unaware that he is anything less than perfect.