This is the first in a series about the real-life impact of autism on families. Check back for future posts.
A guest post by Lindsey Nichols
|My son Dominic|
My name is Lindsey and I am the proud parent of an autistic child. When people find this out I am usually faced with many different responses. Usually one of the first questions I am asked is how I “knew” he was autistic.(I will save the other responses for later posts such as “I am so sorry” and “That must be SO hard,” etc ). Well, I always knew something. I just couldn’t put my finger on it. Let’s start at the beginning, shall we?
Enter Dominic Derek Henning, born on September 12, 2002 weighing a whopping 8 pounds 8 ounces. My pregnancy was as normal as any other aside from the three weeks of false labor that terrorized my last days of pregnancy. My actual labor was tough, a full 24 hours, where he was finally born after some drops in his heart rate using a little vacuum helmet to finally make his debut.
Something was wrong. In my heart, the journey always begins here although the realization didn’t come until much later. Dominic was not breathing well, He was coughing, sneezing, blowing bubbles and a nasty shade of grey/blue. His cries were soft and his tiny chest sunk in every time he took in a breath. He was whisked off to the NICU where he spent his first 16 days of life. Was he autistic from this? Maybe, but that’s an answer I will never know, Looking back I will always wonder what this did to him.
Fast forward to 9 months old. Dominic had always been slow to reach his milestones. Didn’t smile until 4 months, didn’t reach for things until 5 months along with rolling over. He didn’t sit up on his own until eight months. Well wishers and family would remind me that every baby developed at their own pace and would blame it all on the “rough” start he had. I was pacified. Somewhat.
A little voice in my head told me to have him evaluated at nine months because he wasn’t crawling, walking along the furniture etc. So I called First Steps, Indiana’s early intervention program. It took an entire month for them to come out to evaluate him. In the meantime Dominic decided on his own to catch up for lost time and by ten months he was crawling, pulling up, and almost walking.
The evaluation came and went and he was given the golden seal of approval. He was normal, or so they said. I was relieved and felt better. The little voice in my head grew quiet. I called everyone I knew rejoicing in the fact if was “perfect”. Unfortunately this helped lead to later denial of what was pretty obvious.
Now we reach fifteen months old. I am pregnant with my second child. Exhausted and tired from working midnight shifts and being in the first trimester with a one year old and a house to take care of. I received a phone call from my mother early one morning while I was getting Dominic set up with breakfast. “Lindsey, turn on Good Morning America”. It was the first thing she said. I argued momentarily about being busy and in a minute. She was demanding me to and so I did. In that moment my world as I knew it shattered around me.
There on the tv screen could have been Dominic’s twin. They didn’t look alike, but they ACTED alike. This little boy was on a program about autism. I sobbed into the phone. I sat there and cried with my mother. I felt like someone had just grabbed my whole world and flipped it upside down. I often wished I never answered the phone that morning. Never saw the show. Ignorance is bliss and having to face such a reality was almost more than I could bear. Thankfully, over time, those wishes went away.
How did I miss this? The signs were all there. My son who flapped his hands and tiptoe walked when he got excited, would spin objects for sometimes hours at a time, would flip cars and trucks over just to spin and lick the wheels. My son who didn’t point, talk, or have any speech. He didn’t get into anything and would watch his movies for hours on end completely happy in his own world.
I missed it because I loved him. I loved him and was told he was fine just eight short months prior by professionals. I missed it because I knew my heart would surely break if I owned the truth of it. Honestly, the truth is I didn’t really miss it. You can’t receive a true autism diagnosis until age three. I was years ahead of the game. Nevertheless I felt as though I had let him down at the time.
You go through a grief process. I don’t know any better way of saying it than that. You have to grieve the loss of the child you believed you were going to have. It doesn’t mean you don’t still love your child. You just have to adjust to a new life. I felt so guilty for the grief. After all, it wasn’t like he had cancer. The autism wasn’t going to KILL him. The range of emotions that I felt were mind boggling. Love and pain all at once. Scrambling for all the research, starting therapies, doctors appointments all while I was barely holding it together from moment to moment. Did I mention I was pregnant too!?
Worried sick about my new baby and if she would have it too. I found strength I never knew I had and broke down more times than I can count. It is the single most difficult thing I have ever gone through. It destroyed my marriage to Dominic’s father. He was stuck in denial and we just couldn’t stick it out. I couldn’t fight for a marriage and fight for my son at the same time. My son won. He always would (his dad has now found his way through the grief cycle himself and is a very active role in Dominic’s life. I couldn’t be more proud of him. Still this happens frequently with children with special needs.).
The years have passed now, ten of them this next September. I have lived a whole decade with autism and its road. It amazes me still how much love and pain can be wrapped together so tightly when I remember these times. It has been hard, but more over it has been the best experience I have ever encountered.
Having Dominic has changed me for the better. He loves like no one I have ever met. He is the funniest little boy you will ever meet. He makes me look at the world completely differently. I have learned a whole new language, and encountered so many different people along our journey I would have never known without him. I appreciate all the little things in life. His little things are very much so big things. I would never trade it. Never.
This was his story, our story. For every parent there will be a different one, but we all share the same pain and love. It never leaves. Our hearts can soar and break all in one day. It is a life full of beautiful, perfect imperfections. We are truly blessed for everything they teach us.
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