Zachary is 4 years old. He has brown, thick hair that at times seems untamable. In the summer, freckles are perfectly placed on his tiny nose and cheeks. Zachary also has nonverbal autism. He flourishes in his daily routine of preschool, home therapy, play time, dinner time, bath time, and bedtime. Then it is the weekend, which could be filled with changes in Zachary’s tightly compacted daily schedule.
We are starting to be invited to other children’s birthday parties on weekends. These parties are at different places, with different themes, and a lot more children. I notice the chaos more, because I have to. I go into Mama Bear mode. I hear the music louder. I see the lights brighter. I feel the room get smaller as more children and adults come into the birthday party.
I sense myself, in these moments, becoming more protective over Zachary — my eyes never leaving where his exact placement is in the room. Just like chess, I’m always trying to predict Zachary’s next move, and then strategically planning mine. I get pretty anxious about birthday parties for Zachary. He is my first child, but everything “typical” I get to do, for the most part, is with Landon, his 2 year old brother. It is then usually my first time experiencing these things too.
So when we were invited to another 4-year-old’s gymnastics birthday party, I had already RSVP’d “no” in my mind.
I remember as a child going to a couple of parties like this, and I took gymnastics myself. I had a basic idea of what the party would be like. There would be a group of children with instructors that would give out basic instructions and probably some obstacle courses. This party sounds like so much fun for my neurotypical child and awful for my child with autism.
My husband and I are coming across this dilemma more often now. Something that is fun for one child might not be for another, which is true in any family with multiple kids. However, it is important for Zachary to learn new things outside of our home as well. Unfortunately, life can’t always be the same routine, and we all have to learn how to cope when things don’t go as planned.
I always need to research the party place too. First and foremost, is it a safe place? How far away from my home is it, if we have to leave early? If I get lucky, is it autism friendly? The questions are endless, and sometimes we just hold our breath until the day is over and we are all back home. As any special needs parent can attest to, we are always swamped with therapies, research, schools, doctor appointments, and it goes on. Something is always bound to slip through the cracks.
Looking at the back of the invitation wasn’t high on my to-do list. The day before the party I wanted to look up the address again, so we could better time our morning. I then realized on the back of the invitation there was a wavier that needed to be signed, which I hadn’t bothered to read about it until now. I had assumed that I would be signing something along the lines of, “If your child gets hurt, we are not responsible for it.” Not only did it say that, but it also said that if your child has medical or mental condition they cannot participate.
I had read the invitation over and over again to make sure I had read it right. I then read it to my husband, and reading it out loud to him brought tears to my eyes. Then tears started rolling down my flushed face. I didn’t even want Zachary to go to this party to begin with because I thought it would be too hard for him, but it’s a whole other situation when you are being told you can’t by someone else because of a medical condition. I knew this moment would come at some point in our lives: that moment of exclusion from others.
Every night, after dinner but before bed for my kids, I try to sit on the couch and just watch them in their own downtime. There are no demands being put on them; they can basically do what they like, within reason, at this time. Some days there is chaos, other days everything seems relaxed. In between the chaos and the stillness I never see different. In the walls of my house, everything feels and looks normal to me. It’s once we leave these four walls that I feel different as a family.
Now, I felt like society was knocking on our front door of our house and saying we could not come out of our home and join them, because we are different.
In between tears, I tried to brainstorm what I could do. Do I call the gymnastic studio and tell them about my son with autism? Do I just wing it, bring my two children to this birthday party and see what happens? I hate the idea of constantly explaining Zachary. It almost feels like court, and I’m defending him: “My son has autism, but he is really caring and loves to cuddle.”
No one ever says that about any other medical problem. You don’t ever hear someone call a gym with high blood pressure and say, “but I also love animals, and traveling.” It seems ridiculous that I have to use these adjectives, so society can better accept my child. If I had said Zachary has a speech delay instead of autism, my sentence would just be “Zachary has a speech delay.” Instead, I have to tell you that he loves his brother, and plays well with others, because everyone has their preconceived notions of autism.
The real struggle is being able to turn “Mama Bear” mentality on and off. I’m always fighting for and protecting my son. How can I let go, when from the beginning I have been fighting for this child? Zachary has no voice, so I fight for his therapies, for his doctors, for friends and family to understand. It always seems that there is this battle between Zachary and something. So when I’m sitting on my living room floor crying over an invitation to a 4 year olds birthday party, I feel defeated against the world.
I was tired of explaining my family to anyone at that time. In that defeated moment I ended up calling the birthday girl’s mom to tell her we weren’t going to be able to make it to the party. She had assured me that she had already spoken to the gymnastics place about Zachary. She explained that normally they don’t let parents in the gymnastic area and the kids are just with the instructors. She let me know that I was able to be with Zachary in the gym the whole time if I needed to be too.
She also said to me, “I would never have booked this party if I knew Zachary wouldn’t be able to be a part of it.” Do you know how much love had filled my heart for this woman in that moment?
I would never expect special treatment normally, especially not on someone else’s birthday. This Mama Bear had given up that day, but there was another Mama Bear fighting for my son. For the first time, instead of feeling excluded, we felt included. As if society knocked on our door and asked if Zachary could come outside and play.