When April rolls around it is generally a pretty big month in our home. My husband, son, and I all have a birthday in April. Easter sometimes happens in April. World Autism Month happens in April and World Autism Awareness Day takes place on April 2nd. I have a lot of big feelings around the month of April as it was the month that autism first entered our home.
World Autism Month was established to bring attention, understanding, and acceptance for those on the autism spectrum.
Honestly, every single day in our home in the month of April and every other month for that matter is a time of autism awareness. The CDC recently released an estimate that 1 in 54 children in the United States is affected by autism. I find that to be a pretty startling statistic. As a result, it leads me to believe that each of us more than likely knows someone who has autism.
I have two someones in my home.
I have four children- two girls and two boys. They are all incredible in their own ways. My two boys, Jack and Wyat, are both diagnosed with autism. They have autism.
Autism does not define them.
Autism is not who they are. It is a single aspect of them. I can promise you that as long as I am breathing that autism will not limit who my boys are or what they can be. However, autism is a part of them and has become very much a part of my life and the life of my family.
The irony is not lost on me that autism first entered our world on a sunny April afternoon.
I became personally aware of autism in a pediatrician’s office on a day in a month that was dedicated to awareness and acceptance for it. I can still remember the concern in the doctor’s eyes as she gently approached the subject. My son, Jack, was non-verbal at the time and to be honest, the diagnosis was not a complete surprise. A hard pill to swallow? Yes. A surprise? No.
Autism walked in on that day. It took a seat at the table and has never left since.
Our lives quickly became a blur of intervention services and therapies. In order to be more hands-on in whatever my son needed, I quit my job to become a stay at home mom. Quickly, I became immersed in finding my village, building my tribe, and connecting with other moms who were going through similar things with their children. I learned the therapies and educated all who would listen. I prayed for acceptance for my son and I prayed for peace in my heart and soul.
We were cruising along just fine and had hit our stride.
Flash forward two years later, last and we sat in a different pediatrician’s office with our other son, Wyat, hearing a similar diagnosis. Yes, like his brother, Wyat was non-verbal and we were getting him evaluated at the suggestion of his speech therapist. However, I was not expecting to hear that like his brother, he has autism. I was not expecting to hear that unlike his brother, his needs will be greater. Jack is considered high-functioning and Wyat has more moderate to severe tendencies. The signs were there, but I admittedly had my blinders on because he was so unlike his brother.
They say if you have met one person with autism, you have met one person with autism. No two are alike and that is incredibly true in our case.
Wyat’s diagnosis is still incredibly fresh and still painfully raw. There is still a lot to be decided and a lot to be navigated, but I know we will find our path. He will do great things no matter what comes.
With each diagnosis, there was pain and grief and a touch of anger. I feel like it is natural as a parent to want our children to have a life as uncomplicated as possible. There are a lot of ways that autism robs my sons of a life uncomplicated as possible. It kills me that I know they may struggle with things that come so easily to other children. I hate that I cannot fix that for them. It hurts to know that we exist in a world that is often unaccepting of those who are “different” and that I cannot make the world a kinder, gentler place for them. The gravity of that weighs on me.
I would not change my boys for the world, but I would change the world for them.
There are a lot of people who tried to tell me how to feel about my boys and autism. I have had people tell me that it is wrong to feel sad or that I should never make it about myself. There have been family members who have downplayed the diagnosis and in their own attempts to deal with it tried to find other explanations. A lot of the time I feel like I am expected to keep a sunny outlook and not feel the weight my boys are carrying.
But, you know what? I am learning that it is okay to feel what I feel. I am learning how to allow myself the grace to have the hard moments and the days that feel too long before lunchtime has even hit. The tantrums, the meltdowns, the frustration, the fight for services and battles with insurance companies, the judgment- somedays it is too much. There are the sleepless nights where I worry about what will happen when my husband or I am gone. I terrify myself at 3 am about the possibilities of no one being there to take care of them. I allow myself to take the hits, but I don’t allow myself to stay down or to live there any longer than I need to.
If I focus on the hard for too long, I know I will miss the beauty and the magic in the simplest of moments.
For as hard and as long as somedays might be, there a million other ways that autism makes our life beautiful. There are a million other ways I can appreciate the gifts of the beautiful boys I have been given.
Each morning my boys greet me with so much love. I am their person. They allow me to meet them where they are and they invite me into their world.
They have an older sister who at six years old doesn’t quite understand what makes them different, but she knows how to bring them out of themselves. She’s a cheerleader and protector for both of her brothers. There are moments that I don’t quite understand them, but she does.
There are moments I wish I could freeze in time.
The look on my husband’s face when Jack said “Dad” for the first time or when Wyat first used the sign for “more” after months of trying to master it. The first time Jack said “I love you” back was something I will carry in my heart forever.
One day, Jack asked for a cake after seeing one on an episode of Mickey Mouse. “Mom. Go get cake please.” It was his first sentence! After years of praying to hear his voice, you better believe that I drove to the store and bought a cake. I sobbed while celebrating it the entire time. We even lit a candle and let him blow it out.
For a long time, Jack could not play with other kids. He just could not bring himself to do it. He started preschool last fall and I prayed that he wouldn’t be lonely. I prayed that God would give him a friend; someone to walk alongside him, accept him, and love him. One day at pickup, I saw my prayer answered as Jack hugged his new friend goodbye. I cried out of sheer joy. I asked God to give him a friend and He delivered. Since then we have had several playdates and I made a wonderful friend in this little boy’s mama. I have tried but often failed to adequately explain what a gift this friendship is for both of us and what an answered prayer her son is.
All of these things seem simple enough, but they are milestones that took a marathon to get to. We’ve learned to celebrate each and every victory- no matter how small.
Autism awareness doesn’t start on April 1st for us and it doesn’t end on April 30th either. I will spend the rest of my life advocating for my boys and others like them. I will use my voice to educate others. If I can change just one perception or make just one person’s journey a little easier, I will have succeeded. I never envisioned myself to be an advocate for anything, but here I am.
I still have my moments where I see autism as the thief who has taken so much. In those moments, however, I look at my sweet boys and I know nothing is really lost. They are exactly who God intended them to be. They are beautifully, wonderfully, and purposefully made. I am in love with who they are and who they will be.
There is beauty in the unexpected. You just have to be willing to see it.