To share or not to share?
That is the question I haggled with after coming to terms with Declan being diagnosed with Autism Spectrum Disorder.
After he was diagnosed, we moved into a world we knew nothing about.
- I began to read everything I could about autism so I could learn about the diagnosis.
- And I had to try to make the world navigable for our family who was experiencing something unique.
I found a lot of solace reading other’s experiences with autism. I also learned a lot of useful strategies and techniques they used to help their loved ones. Taking new info and allowing it to percolate in my mind in order to translate the idea in a way specific to our family and needs was really helpful.
And my experience in the world was that a lot of people just didn’t know about autism. There is an understanding of autism as a concept, but seeing a child who is raging – there is not always an autism understanding.
I decided to become a voice. An advocate.
And to share.
To tell others about our experiences with autism. To help provide the same comfort I feel in reading other peoples experiences with autism. To provide new ideas about what works for us. And to provide information about ASD to people that are unaware.
My notion to share started last year. I wrote an article for Autism Parenting Magazine about why Autism Awareness is so important to me. And why I continue to share. You can read it, here:
“There was a time that I did not say that my son had autism. There was a time that I felt the stares while my son screamed, yelled, punched me until I could get him to a safe place. There was a time that I accepted the judgment, the raised eyebrows. There was a time I would drive past our planned playground trip if I saw other kids there. There was a time, but not anymore.
Who gained anything from my silence? I know neither I nor my son with Autism Spectrum Disorder, Declan, were gaining anything. Declan experiences things differently than I do. And instead of speaking up and telling you about him, about autism, about the things I do understand — I hid him. I kept him safe in our house. I avoided feeling stares and judgment.
Once at the grocery store an older gentleman leaned into Declan and said, “Hey little guy! Are you being good for mommy?” Declan went right into defense mode. He screamed, he cried, he turned around and grabbed the groceries in our cart throwing them out at this gentleman. We were checking out, so everything on either side of him – all the candies, gums, magazines – anything he could get his hands on went flying. I tried to calm him, pick up our food, and pick up the ripped magazines that were thrown. The gentleman said to me, “I’m so sorry.” I told him it was okay. That’s all I said. I held Declan’s hands on the cart. I put his head in my chest with my chin. I got through the line. I got through the stares. I got to the car, and I cried.
Who gained anything from my silence?
Transitions are hard for Declan, yet one day at the store I had to go to the bathroom. Which means I had to get Declan out of a cart and once I was finished, I had to put him back in. Which leads to another meltdown. I’m trying to get my groceries on the belt as fast as I can to get to Declan, who is screaming, kicking, throwing whatever he can get his hands on. An older woman in an electric cart comes up. She saw a child having a temper tantrum. In her eyes, he was being a bad little boy. She moved her cart up to try and pin his legs, to stop the kicking. Mother’s unite, I suppose. Did I tell her he wasn’t being bad? That he was experiencing something called autism? Nope. Not this girl. Not this time. I got to him, pinned him in an awkward cart bear hug and got out. I got to the car, and I cried.
No one gained in my silence.
Recently, I took the kids to the playground. On this day, Declan wore a Superman T-shirt. Another little boy was wearing the same shirt and ran to Declan. The little boy squealed and pointed to both of their shirts. Declan covered his ears, yelled “NO!” opened his two hands and slapped the boy repeatedly before I could get him off. I apologized profusely to the boy and his grandmother, but the boy was inconsolable and was taken home. I look at Declan, I put him in time out and I tell him “No hit!” He can see that I am mad and cries, shaking his hands in front of him yelling “No!” We play after time out, but I still feel the pain of autism as we drive away.
Then the story changes. We go back to the same playground later in the week. The little boy and his grandmother are there. I do not drive pass. We stay, we play. The grandmother comes up to me and says that she did not think my son liked her grandson after their last meeting. I told her I was sorry. I told her my son was on the spectrum and has a hard time with social interactions and frustration but that we were working on it. She says, “On the spectrum – does that mean he has autism? Because I told my husband I thought your son had autism. We learned about it from a friend.”
Hallelujah! I loved that friend so much at that moment. Someone before me spread autism awareness. Someone told this woman and others about autism and helped pave my way. Someone explained what I was having a hard time trying to say. My son has Autism Spectrum Disorder (ASD). I did not cry when I got in the car that day. I smiled!
Autism awareness is so important to me. I want to tell people about ASD, what it is, how different it can be, and our experiences. I am not about to put a flashing “AUTISM” sign above Declan’s head, but you will hear me talk about it and I encourage you to ask any question you would like. I’ll do my best to answer. It helps me, it helps you to understand Declan, it helps you learn about ASD and somewhere down the road it is going to help someone who is at a playground trying to explain why her son is having a hard time. I don’t even know that person, but I will do my best to help them.
Declan is amazing. Declan loves superheroes. He loves to sing. He loves to jump. Declan has Autism Spectrum Disorder. He sees, feels, and hears, tastes, smells things differently than I do. He lost his speech for a while and has a hard time with language, but speech is coming back! He has trouble sleeping through the night, with frustration, he is impulsive. Declan likes deep pressure and gives one of the best bear hugs ever.
Now when you see me at the store, most likely, you will see me alone. Declan is at his Special Education preschool making leaps and bounds. If Declan is with me, he is shouting his favorite song, “The Family Finger” song. Me? I’m singing along. You are going to see us no matter what. How I perceive your look is up to me. And in order for Declan to be comfortable being Declan, he has to see my shining smile in all his good choices, and in all the choices that just don’t matter.
And you will always see me in the self-checkout line if it is available, away from the memories of torn magazines and thrown candy.”