The Gift of Autism

The mind is a powerful thing. If you are lucky enough to have a chaotic one like mine you know how much power it’s capable of having over you. I used to define myself by the things I fell short on, the things that I forgot and what I couldn’t quite finish. What I always failed to remember were all the incredible gifts that God engraved into my heart. The ones that He gave me to fulfill His purpose for me.

I have never felt ordinary. That does not mean that I think I’m special, we are all special. But in my gut I have always felt I was made to do more.

I recently started writing my story from the beginning and it has pieced together so perfectly what His plan is for me. 

My childhood was wonderful. I had loving and intelligent parents, I got to travel and participate in things I was interested in, I had a very structured home, I knew God’s love at a young age, I went to great schools, I had friends, I was a part of things, I could go on and on. So why is it that when I go back to my childhood I can’t remember specific events that were fun? Why can’t I pinpoint how excited I was during all of these great experiences I had? The more I wrote, the more I realized that majority of the vivid memories that I have involve painful experiences that other people around me were going through.

I remember the girl in a wheelchair waiting outside of a line in Disney World and feeling sick to my stomach that she didn’t get to ride. She had to spend her entire life watching everyone else do fun things that so many of us take for granted. I remember the homeless woman outside of the McDonald’s in New York City in December. I imagined how lonely and cold she must have felt and wondered what she would be doing for Christmas. I remember the faces of people sitting in the front row at funerals. I remember the lady crying in the pew at church while the congregation sang "The Old Rugged Cross".

Empathy is the ability to understand and share the feelings of another. Empathy has also been the driving force of my thoughts and actions for as long as I can remember. It has been a great gift but has also created lots of pain in my own life. Pain that wasn’t mine to have. 

I am a firm believer that being true to who you are is what God puts us on this earth to do. We are His body. The only way we can function as a body is if we use the gifts that He has given us. If we are a nose, we need to be a nose. We can try really hard to be an arm but it’s not what we are. So how does this depth in my heart and mind contribute to my purpose here on earth? How do I use this as a tool to fulfill His plan for me? This is what I have prayed for as long as I can remember. 

Lord, show me your purpose, Your will for me. 

And this is where it gets good. 

My dreams of being a mother were fulfilled in November of 2014. Julien James Charpentier came into my world with a bang. I had waited so long to have that baby in my arms. I bargained, begged and pleaded with God to let me be a mother, no matter what that meant. I was ready. I really thought I was ready. 

Julien's entrance into the world started as I always imagined it would. The progression of labor was slower than it should have been but eventually things moved along. When it was finally time for the epidural I was ecstatic. That excitement was cut short when the anesthesiologist could not get the epidural in place. After seven attempts(yes, seven) I just had to accept that the pain wasn't going anywhere. Once it was time to start pushing Julien wasn't moving like he should have been. I would push as hard as I could and he was barely budging. Suddenly, the room filled with nurses. His heart rate was dropping and it was too late to do an emergency c-section. This was it. I had to do this. After a 4th degree episiotomy and 30 minutes of vacuum assisted delivery, he finally made his first appearance. He had a hematoma that covered his entire scalp. He had scratches and bruises scattered all over his body and his collarbone was fractured. My boy had been through a war before he even came out into this world.

He was a tough baby. He suffered with reflux and colic. He didn't sleep through the night until he was 12 months old. He was not consoled by being held or rocked. It was rough. But it was wonderful. In my eyes he was everything I ever wanted and more. He still is. He was ahead of the game. He walked early, talked early, you name it. He was content playing alone. He was obsessed with tractors. He loved to be read to. Everything was great. And how would I have known differently? I was a first time mom who didn’t have anything to compare it to. But I did know one thing, he was brilliant.

Julien was 22 months old when he finally started going to daycare. Shortly after starting it was brought to my attention that there were a few things that were concerning to his teachers. He didn’t always respond to his name, he didn’t initiate play with other kids and he didn’t make much eye contact. In my mind this just meant that he was an only child who wasn't used to having a playmate and maybe he just didn’t want to listen. That makes sense, right? 

Then the plateau happened. All of a sudden he just wasn’t doing new things. In fact, as quickly as that happened, he started regressing. I remember the appointment with his pediatrician very vividly. We answered a questionnaire that would indicate markers for early signs of Autism. Long story short, red flags everywhere. How could this be? How did I not notice? I immediately felt defeated. In an effort to redeem myself I quickly scheduled the appointment for a formal evaluation. It was long. He was being himself. Lining all of the toys up perfectly. He immediately went for the toys that spiked interest and wanted nothing to do with the others. He was in his own little world. As I watched him play during that evaluation it hit me like a ton of bricks. This is my son and he has Autism. I knew it before she ever said it. 

One week later my mom and I sat down with the doctor as she told us that he he Autism Spectrum Disorder and according to his scores he was in the moderate category. As my mother cried I remember feeling like all of my fears were confirmed and as scary as that sounds I felt relieved. Relieved that I had acted fast on scheduling this evaluation and hadn’t let my own fears and denial stand in his way. 

Within a week he was in occupational and speech therapy. I started reading every book on the market. I read through countless blogs. All of this was happening while I was also caring for my sweet three month old baby girl, Chloe. So you can about imagine how overwhelming this was. There were also other life circumstances that were extremely difficult but that’s a totally different story. 

He did beautifully in therapy. We had bad days here and there but for the most part he did great. Not long after starting therapy I got a call saying that there was an open spot in an amazing full time ABA center. The waiting list was supposed to be a year and in less than a month we had a spot. Surely this was confirmation from God that I was doing the right thing. He started and immediately fit right in. I was amazed at how perfectly structured this place was and how they could give him so much more than I could to help him. I trusted the providers that specialize in this. I trusted God. 

For two and a half years he stayed in ABA full time. In this two and a half years I saw a precious baby boy who struggled with transitions, emotions, expressing his feelings, socializing with other children, having tantrums, having trouble in big crowds and so much more, turn into a 4 year old boy that excelled in almost all of these categories. 

He got all of the help that he needed because I put my own feelings aside for his well-being. I kept his quality of life as my number one priority and saved my tears for conversations with my mom or for the pillow that I laid my head on at night. 

The deep and empathetic soul that God provided me with saved Julien. It saved me. God turned one of my most painful characteristics into the most beautiful gift I could ever ask for. He lead me, He gave me peace, He confirmed my strength, He gave me an amazing support system, but most of all He reminded me why I am the way I am. He is fulfilling my purpose. I was put on this earth to be a mother to these children who have special needs. He knew that I was capable of feeling Julien’s struggles and He showed me that I can turn that pain into something more precious than anything I could have ever imagined. 

The bottom line is that Autism has refined me. It has built me into the woman that I am today. It has taught me more than I ever imagined I could learn. It has given me courage, strength and confidence in myself as a mother. It has made me a more accepting person. It has made my child unique and perfect in his own way.  Autism isn’t easy but it’s amazing. 

So be kind to the woman at Target who has a screaming child in her cart. Sometimes that mom is fighting battles much bigger than a temper tantrum that's disrupting your shopping trip. Sometimes that mom's life is that temper tantrum and chances are she is doing her best.

xo

Mary-Ellen