I’m struggling.
We are raising two neuro-divergent boys in a world that is very different from the one that raised us. Access to technology, social media, availability of information, residual effects of a global pandemic, gun violence, climate change, mental health crises… It’s a lot.
Our boys have vastly different levels of exposure to information based on their respective needs and experiences.
Fletcher attends a school that is kindergarten through eighth grade. It has been a great fit for him. He has had very strong veteran teachers at every grade level who have been the perfect balance of structure and nurturing for him. They have all quickly identified that he is very smart, but often struggles with effort. He needs frequent breaks, and gentle reminders to not shout out answers the minute they pop into his head. And also requires the occasional chat about being mindful of boundaries and personal space.
He is around peers diverse in background, culture, home situation, primary language and age and we are grateful for the rich upbringing that provides. Many of his friends have older siblings. He feels like he IS a middle schooler, so therefore is drawn to them whenever possible (playing basketball or soccer on the playground, for example). And one of the ways he connects with Mike is through football. He’s the ballboy for Mike’s high school football team and spends a lot of time from August through November with high schoolers. This group of young people has embraced Fletcher in ways I could never have imagined. He is one of the team which has been absolutely incredible when it comes to finding a sense of belonging, building relationships and having people to look up to. I love that for him so much. He’s the oldest, so doesn’t have any older siblings to admire. This experience takes care of that for him. And he absolutely lives for Friday Night Lights.
Being a football family has had a profound impact on all of us. Five years ago, Fletcher couldn’t attend Mike’s games because the speaker volume and decibels sent his sensory systems into overdrive and it was meltdown city. That was before we knew he had sensory processing challenges and before he had the language he needed to describe what was happening inside that sweet little body.
So now, this kid is on the sidelines every Friday night. He’s interacting with officials, holding two footballs at once, following the game and knowing when to give a ball to the ref. He’s fist bumping, chest bumping and high fiving these giant high school football players. He stands proudly next to his daddy and without a shadow of a doubt, knows that’s exactly where he belongs. But, that means navigating a world that is more mature than he is which brings with it access to language that as a mom I might prefer he learn a little later in life. The positives trump that though.
Max on the other hand does not attend school. Schools aren’t currently set-up to nurture his success. That’s not anyone’s fault, it’s the nature of how the educational system has evolved. Schools are underfunded, under-resourced and staff are burned out from carrying the burden of having to be everything to everyone for decades…and then through a pandemic.
So Max’s socialization with same-aged peers, or children in general is relatively minimal, although we’re working hard to create opportunities to change that. His learning happens through experience. We are in occupational and speech therapies two times per week each, we swim at a local YMCA 3-4 times per week where he interacts with the staff and senior swimmers before their water exercise class. We make frequent visits to museums, the zoo, libraries and nature centers in the area as well, but we mostly navigate those places on our own. And he spends a lot of time with both sets of grandparents and other members of our family.
I have a lot of control over what Max is exposed to and I suppose there’s some comfort in that for me. That’s very much not the case for Fletcher. He spends quite a bit of time away from home at school and in various activities where neither of his parents are with him. He has an acute sense of hearing. While it’s selective at times, or hard to access when he’s ultra focused on an activity he’s interested in, he hears every adult conversation within earshot, every big word used, every swear word uttered by a peer or high school football player within a 5 mile radius, and takes note of the context. His vocabulary is expansive for this reason, and has been since he could talk. Like policing my driving etiquette at 2 “Mommy, your hands should be at 10 and 2.” Or “Do you have your seatbelt on? Safety first!” (for the record, I always wear my seatbelt ;))
If I had a nickel for every time someone commented on his language acquisition as a little one, we’d for sure have a private jet that could take us on fun little family vacations so we could avoid the sensory nightmare that is an airport. A girl can dream.
Fletcher is eight. His brain doesn’t necessarily compute when it’s the right time or place for a word or phrase. It doesn’t say “just because you KNOW the word doesn’t mean you should use it.” What he thinks, he generally says. Out loud. In public. Sometimes even telling adults about their behavior. He’s responsible for causing hilarity to ensue on a moment’s notice, lots of laughter and humor… but also some of the most cringey moments of my life. You know, balance.
Max is limitedly verbal. Talking is not his primary form of communication…yet. He uses a PECS communication system flawlessly as well as an assistive communication device we call his talker. Both systems are set-up so that he can easily have his needs met. He’ll eventually be able to carry on a conversation with his talker, but isn’t quite there yet. The words he has access to are those that are either pre-programmed, or what we add, based on his likes, dislikes and general needs. He doesn’t have the privilege? of adding words to it that he overhears in someone else’s conversation or thinks are cool because an older kid was using it on the playground.
And then there’s technology and social media. Max NEEDS technology. Fletcher LOVES technology. The lights, the noise, the fast pace, immediate gratification… It feeds so many things for him. But it can also be a parent’s nightmare. Technology isn’t like it was when I was growing up. I was happy with Oregon Trail and maybe a memory game – Pac-Man if I was lucky. These kids have the world at their fingertips using a very intuitive system. It’s simultaneously amazing and terrifying. The constant need to adjust parental controls, getting out in front of what things you KNOW you don’t want your child to be able to access and then the fear of all the things you may not know. Fletcher isn’t on any social media apps, but loves a few shows that are only available on YouTube. That is a rabbit hole in and of itself.
So I’m struggling with how to navigate this very big, information-saturated world full of incredible tools, but also things that can be harmful to littles who don’t even realize what they’re being exposed to.
Fletcher is an empath. He feels on a deep level. He’s kind, compassionate, extremely energetic and bouncy. He’s observant. He’ll be the first to notice your haircut, a tiny bruise on your leg, your squishy arms, and will tell you that you are beautiful as you’re getting ready to leave for work. He’s a giant personality in a body that reflects having tall parents rather than his tender age. And… sometimes he also uses colorful language. I have zero control over that.
I’m struggling with not holding him to an unachievable standard. With letting him be a kid and not feeling like I have to hover, hyper analyze every situation, every interaction with other people, every….thing. While also making sure he stays safe, knowing that many of the people he interacts with don’t know his story, our story.
The caring about other people’s opinions ship sailed a long time ago (or so I thought). I guess I’m afraid of our kids being judged by people they interface with who don’t know what they navigate on a daily basis. Of being disciplined for something they can’t control and can’t verbalize. Their challenges aren’t “visible” necessarily, which often adds an additional layer to life for us.
All this to say, that I’m simply struggling. We’re navigating all of this as it comes – and in the best way we know how.
I’m not coming with any real global solutions at this point. Just the admission that I’m having a hard time – and maybe you are too. Or maybe, you have this all figured out. And if that’s the case, please share your tips and tricks for navigating this complex part of parenting. I know I could use them, and so could many others!
XOXO