Yesterday was Mother’s Day. I personally hate that holiday, for my own personal reasons. I have an amazing mother and love to celebrate her on that day. But after years and years of living through that painful empty feeling on this day as I struggled with infertility, that feeling stayed with me even after the blessings of my two kids. I feel like every day I am reminded of the miracle God did in my body to bless me with Sam and Summer…just like every day before them, I was reminded internally and by my surroundings that I was not a mother. So yeah, in my family, my husband knows I don’t want to make a big deal about it. I prefer we go about that day like any other day.
So like any other weekend, we decided to take the kids to an outside area to run around and enjoy the sunshine. Also, to wear them out, because Lord Jesus, this quarantine with no daycare or help has been killer!
When Sam was younger, people didn’t really seem to notice that he was different. We got looks of course, because he is cute and sometimes they would watch when he flapped his hands rapidly with excitement. But the looks didn’t really become more frequent until he was a 1 1/2 year old that looked like he was 3, and was still being pushed around in a stroller. I understood the looks. Before you are a parent, and even after, you tend to judge and think things like “that kid is way too big for a stroller” or “he should be walking by now” and even “American obesity starts at such a young age.”
What these people failed to realized, is that my son couldn’t walk yet. Not because he was lazy, or because we carried him all the time (ok we did do that, but he’s our baby and you can only carry them for the first few years), but because one health concern related to Fragile X, is low muscle tone. Sam had very low muscle tone from the very beginning. He couldn’t hold on with his arms, or pull himself up with his arms. He had little to no abdominal muscle to sit himself up. In fact, Sam was not able to sit unassisted until he was about 18 months old. He looked like a little prince at daycare, propped up by all these pillows with tons of little baby girls crawling around him and fawning all over him.
So due to his low muscle tone, Sam sat up late, crawled late, and didn’t start walking until he was about 2 years old. But did these strangers know that? No.
It would be easy to get offended and mean-mug someone as they judge my parenting or my child while being ignorant of the whole story. But what does that accomplish? Nothing. I realized that the best way to handle the situation was to simply smile at the stranger as if what I was doing was the most natural thing in the world. And you know? They smiled back about 98% of the time. They still didn’t understand, but something as simple as a smile can make someone open to realizing that maybe they misjudged.
My husband struggles with this a bit more than I do. Now that Sam is older and walks, he has more control of his body, which includes having learned how to throw tantrums out in public. Already, when Sam walks, people look at him because he walks and runs like Woody on Toy Story. Legs kinda flying all over the place and hands in his mouth and in the air while he squeals with glee. I personally think it’s adorable. I mean Phoebe in Friends had it right when she said running like that is freeing, because when Sam does it, he looks free and happy. But just like with Phoebe, people stare and notice that there is something different. Not wrong, but different. Again, I walk along like it is the most normal thing with a ginormous smile on my face, watching my son be so carefree and full of joy.
Derek on the other hand…his protectiveness over Sam can get to him at times. Just yesterday, for Mother’s Day, we were walking around a downtown area in Northern Virginia. Derek and Summer were eating ice cream on a bench, while I walked around with Sam nearby. Other people eating ice-cream of course were watching him, but nothing out of the ordinary. Suddenly, Sam started running toward the large train trailer that was in the middle of the park where other kids were playing. I thought he wanted to get up the stairs on the train and play as well, so I didn’t keep as tight a leash on him. But as Sam got closer to the train, he veered to the right and headed for a black stroller, that was not ours. As I ran to catch him, he started climbing in the stroller and the man who it belonged to started yelling at Sam “No..that’s not yours” as he saw me walk up. His daughter started freaking out like Sam was going to break the stroller and I just smiled and apologized as I attempted to pull Sam away. That’s when the tantrum started.
I mentioned that Sam is also Autistic in earlier posts. Well part of that includes his singular focus on an object or activity that he can not be swayed away from. He isn’t hearing you when you say “that’s not ours” or “not right now.” All he sees is the object of his delight within grasp but he can’t get to it. When he gets distraught over this, his whole body goes limp like a wet piece of spaghetti and he slides right out of your arms to the floor, no matter where you are. It’s kind of impressive. So surrounded by at least 50 other people, Sam started doing this while flapping his hands and wailing.
I don’t always tell people that I meet that Sam is Autistic or has Fragile X, because honestly, it doesn’t define him. It just helps shape some of his personality traits and coping mechanisms. But in this case, the Father of the black stroller seemed extremely uncomfortable so I smiled and said “don’t mind us. My son is autistic and just really likes the stroller.” He smiled back at me, calmed his daughter down, and looked a little embarrassed for how he reacted originally. The man looked like he was debating with himself if he should try to help me calm Sam. When Derek came over to help me, all he saw was the man staring at Sam as Sam had his melt down. He picked up Sam and said “I’m gonna let him calm down in the van” and then walked away.
Later, Derek was venting to me about how annoyed he was at that Dad just staring at Sam, as well as the other people around us. What he didn’t realize is that the Dad was staring because I think he was trying to decide if he should intervene and help me since I obviously couldn’t fully grasp ahold of my very long boy that was not letting me console him. I don’t think he was staring in judgment.
As parents of children that are different, sometimes I feel like we have the tendency to assume that other people are immediately judging them or looking at them like something is wrong with them. But you know, I’ve come to realize that most people just don’t know how to help us or them. It’s natural to turn and look at a loud noise, or at a commotion happening near you. We all hate rubber-neckers on the highway, but find ourselves being one when we pass a crash site. Sometimes, just being open about what the situation is and letting them know that you are ok stops the staring. And usually, they will stand by just in case you need help with something. I can’t tell you how many people have helped me in the airport or at the hospital as I struggle with Sam at times. And every time, I let them know how much I appreciated the help, because hopefully, the next time they see a mom or dad trying to console an inconsolable child or see someone struggling to keep it all together in front of tons of people, hopefully they will offer the same help and support.
We are all in this together. People without children that have different needs may not understand all the struggles we face day in and day out, but that doesn’t mean they aren’t willing to help when they can or that they can’t help us. Everyone is different, and we all have needs. How do we expect others to learn how to help and understand our children’s if we aren’t willing to talk about it and let them help?
Food for thought 🙂
Living Fragile 