This morning, Luke and I dropped Everett, my 14 year old neuro-typical child, off for his 5th summer of Jr. Lifeguards. It is an amazing 3 week summer camp with stretching, vitamins (run/swim), lessons on beach ecology, marine life, tides and waves, first aid and CPR, mock rescues, games and more. I remember the first few years, I’d arrive with my binoculars to make sure I knew where Everett was at all times. Now he jumps out of the car and I see him when it’s over and he’s begging me to make a stop for food on the way home. Everett’s experience with the program has evolved through the years but my beach routine with Luke has not changed, not even a little.
My job offers more flexibility than Glenn’s does so I am lucky enough to spend the majority of the summer days with Luke. We drop Everett off, then head to the beach for a long beach walk. Some days we take a long walk then head home and other days we bring our beach chairs, towels, lots of food (after a beach walk, Luke has a ravenous appetite) and water and watch the junior guards do their thing.
This morning we opted for just a beach walk since I have quite a bit of prepping to do for a summer camp for students in special education that starts tomorrow. Yay! I’ll blog about that soon. As we started walking toward the lifeguard tower, ALL 100+ of the junior guards plus parents were standing in a big group, Luke started to get anxious. He slapped my arm a couple times letting me know that there’s a crowd of people ahead and he doesn’t like it. Shame on me, I did not prepare him enough, should have looked at old photos, but I saw a clear path around the guards and parents, so aside from a couple glances we got due to the hitting, I thought we were all good.
Let’s back up a bit and talk about the group of parents standing together watching their children experience this amazing camp, many for the first time. They were talking and laughing together like most parents do. Not that in itself doesn’t seem monumental except if you have a child who doesn’t like talking and laughing with a crowd of people. There is that part of me that wants to join them especially this morning because I knew some of them, but that is not something that Luke will tolerate. He likes to keep moving at the beach. No matter how kind they may be or how much they include him in the conversations, standing around, talking to others is not on his agenda. He actually grabbed my hand and hit himself in the head with it a few times both coming and going. It’s hard to explain and even harder to understand, but he doesn’t like crowds, even small crowds and he doesn’t like transitions or when I talk to other people when he’s by my side. Sometimes I rush to walk ahead of him to get a few seconds to say hello before he catches up with me, sometimes I wave and smile but every time, I am sure I look like the crazy mom who is trying to hold it all together. I want to mention that Luke does great at school and physical behaviors like hitting and pinching are not a concern, so sometimes I can’t help but wonder why Luke displays these behaviors when he is with me. Do people wonder what goes on in our home? I know many children act out at home because it is their safe place where they don’t have to hold it all together, but I still wonder what other people think.
Luke’s anxiety around other people is not just junior lifeguards, it’s happened at flag football and baseball games, at swim meets and surf competitions. I do believe that other parents get it enough to understand that I have to put Luke’s needs and well-being first, but I often feel badly about not being more social. I get an occasional glance as if to communicate, “sorry, that must be tough” or even a couple times a “I don’t know how you do it”. By the way, don’t ever tell anyone you don’t know how they do it. Our life with Luke may be challenging at times, it's always busy and it may look different than most (I can also say the same for my neuro-typical child) but life with Luke is filled with so many happy moments of pure joy, it allows us to live in the present, enjoy each moment, each day and take notice and find beauty in the little things. That’s what most people don’t see.
My intention remains to let things go. To stop worrying about what others think or if I do or say the right thing. To admit that I have social anxiety. To schedule time with friends without Luke so I too can have some adult socialization. We have enough extra things to do, I mean not many moms are helping with toileting and giving their 18 year old a bath each morning, so let’s be good to ourselves. Easier said than done, I know and I am constantly working on this. I know and really like many of Everett’s friends' parents. Most don’t have a child with a disability but they are very good, very kind people who always include Luke. But no one gets it like a parent who is going through it themself. I have friends whose children are non-verbal, medically fragile, autistic, have a learning disability, are blind, I could go on…but even though our kiddos have different disabilities, we all get it and are there to listen, ask for advice, rant when necessary, laugh and cry together. Although my network of parents is not what it used to be, I am blessed to have a community that allows this, but not every parent does. Many feel isolated and I want this to be a place where we feel safe, connected, like we belong and a place you can go if you need a few laughs, a good cry or to be reminded that you are not going through this alone.
Luke is 18 and I’ve helped to build an inclusive community where we live. I help, host and share community events for families of all abilities and while I continue to educate and connect our local community I want to grow an online community so that parents can connect with others regardless of where they live. I challenge you to share your story or a bit about yourself, child or family in the comments. Let’s share ideas, experiences, resources, etc! Remember that you, yes you, are not alone.