Parenting a special needs kid can be at times like walking cautiously through a minefield. What’s key through the navigation is optimism.
The trouble is not always visible. The route previously deemed safe one day can be disastrous on another. What brought on anxiety and peace once may not always and vice versa. Every day truly is different, no matter if the same routine is followed throughout. The best way to get over a bad day is to move on to the next one, hoping and praying lessons were learned when unfortunate behaviors and lapse in judgments occur.
There are so many motivational sayings that go along with raising special needs kids. Because I think these are healthy to retain, I have many of these saved on my work computer. One I like is, “Once you accept that your child will be different, not better or worse, just different, that’s the first step.” Another is, “Until you have a kid with special needs you have no idea of the depth of your strength, tenacity and resourcefulness.” Another is, “Children with special needs come into our lives, leaving footprints on our hearts, ad we are never the same.” Perhaps my all-time favorite is, “Sometimes angels are disguised as kids with special needs to teach us how to be better people.”
Maintaining these sorts of positive perspectives keeps me level-headed, but there are times when there are challenges to staying optimistic. As we tell the volunteers at our TOPSoccer program for special needs kids, the key traits needed are compassion, patience and a flexible brain. It’s a matter of picking the right battles and simply letting some things go from time to time.
Some examples on the topic.
- If Carson wants to wear his favorite Berlin Intermediate sweatshirt every day of the week, I will only fight it so much. If he is so insistent that it brings him to tears at 7 in the morning when I try to encourage a different shirt, I cave.
Each day starts with a different outfit in mind while hiding the sweatshirt. What worked years ago no longer does, however. He’s too smart for it. He remembers now. There are many mornings I find him standing in his room and the shirt his mom laid out for him on the floor. He’s waiting and thinking. The anxiety is building.
What I do know is it’s not worth a meltdown if it brings him some sort of peace. We just need to remember to wash it each night and hide it nearby in the hopes he forgets.
- Carson’s necessity for a routine has rubbed off on me, ramping up my own obsessive and compulsive tendencies more than normal.
I spend a lot of time laughing at myself. Pam often joins in as well. I can be ridiculous, and I know it, but I come from a good place with my weirdness.
Carson enjoys my odd quirks each morning. I joke with him, “let’s go, okay it’s 7:12 a.m., we have to get to Dunkin, have our coffee, eat your breakfast and then to school by 7:30.” It works and gets him laughing. Meanwhile I’m sweating.
- The smallest things bring me joy when it comes to Carson, especially when he walks into school with a smile.
His favorite morning thing currently is to listen to the Los Angeles traffic report on the way to school. He laughs out loud over it for some reason, especially when I remind each day it’s over 3,000 miles away and it’s 4 in the morning there. Yet, there is some lady in a helicopter talking about expressway traffic and the likelihood of fog rolling in at sunrise. He loves it.
When we arrive at school, he then sets my navigation for a point of interest in Los Angeles. Yesterday it was the airport. The day before it was a gas station. He gets a kick out of my arrival time. Whatever it takes.
- I think way too much about my son not having friends. Growing up, friends were everything to me. Many of these individuals remain great friends today. I get sad when I wonder how Carson will make friends in his life.
What’s interesting is Carson doesn’t seem to care. He’s content doing his own thing and seems to embrace solitariness, but it’s always on our minds.
It’s why it warms our heart when we hear he has a little lunch table of special friends he sits with now.
- One of the ills of society with young people today is the sense of entitlement. The victim card is one I see thrown around a lot by kids, including my neurotypical older son. With Carson, none of this is a problem. He doesn’t seem to expect anything. In some ways, he’s more laidback about things than his big brother. This sounds contradictory with some of the things I have written about in this space today.
However, it’s true because his expectations are different. He doesn’t expect when he goes to Walmart to grab all the candy he wants or get the new video game or soccer cleats even though he has perfectly fine ones at home.
When he doesn’t do well on a test, Carson shrugs his shoulders and moves on. When Beckett doesn’t do well on a test, he makes excuses and blames a teacher for not providing sufficient review or a friend for keeping up too late the night before. There’s not a lot of ownership on his part.
Matthew McConaughey put it well, saying, “Life is not fair, it never was, it isn’t now and it won’t ever be. Do not call into the trap. The entitlement trap, of feeling like you’re a victim. You are not.”
