Finding Joy in a Special Needs Summer
The thrill of summer is a familiar feeling for many families. The excitement of a vacation, the anticipation of late night fireworks, the lazy days spent at the pool, in a hammock, or with family.
But summers hit differently when special needs are thrown into the mix. Instead of sleepaway camp, it’s speech camp. Instead of afternoons with friends, it’s doctor’s appointments and therapies.
This reality hit really close to home just a few weeks ago, as I was taking my second son (age 6) to speech camp one morning. This child’s brain has always worked faster than his mouth, and his articulation takes the hit. Even as he’s detailing the physics involved in space travel, or inquiring about the states of matter, he is difficult to understand; which makes conversations with adults and kids alike incredibly frustrating for him.
Even though articulation errors are nothing we haven’t dealt with before, a new challenge emerged out of the blue this summer….
Tics.
Tics are compulsive, repetitive muscle movements that are not easily able to be controlled. Tics may come in the form of vocal or motor tics. Examples of vocal tics may be repetitive throat clearing or nose sniffing. Motor tics may be movements like head turning, nodding, or blinking. Tics often change and morph over time; and they may be debilitating one day and nearly nonexistent the next. Tics and Tourette’s are often co-occurring with other neurological disorders such as autism, ADHD, and OCD.
For my 6 year old, his tic started as a head nod that I noticed sometime around the end of May, right before school let out. It has since worsened into a facial grimace accompanied by a violent head nod. This has caused him to be dangerously close to hitting his head on the counter multiple times.
Back to speech camp: As I was dropping off my 6 year old to speech camp, I was flooded with new worries due to his tic. What if other kids make fun of him? What if the teacher thinks he is purposefully misbehaving? What if he accidentally hurts himself? Will he feel different than everyone else?
Besides the immediate worries, my mom brain was already two steps ahead in my concerns: Is this the start of Tourette's? Will he get diagnosed like his big brother? Will he need medicine? What kind of supports or accommodations do I need to advocate for next school year? And the worst worry, the worst fear, the one nagging thought that just won’t go away…Is this my fault? The guilt is almost debilitating, and I can literally feel my heart become heavy, even as a I assure myself that it’s unwarranted.
As I dropped him off in his speech classroom, I hurriedly told the teacher about the new development of his tic, and gave a 30 second run-down on how to address it, being sure to dispel the myth that having a tic or Tourette’s means that a child will scream swear words. (This is, in fact, incredibly rare). Then he went to speech camp for the morning. And it all ended up being okay. He had a fun time, made some crafts, and had generally positive things to say about the experience.
He made it through. WE made it through. There will no doubt be more challenges this summer, I know. Swim lessons are coming up; which means a new set of teachers and peers to educate about tics, Tourette’s, and the social and physical challenges they bring. Our summer now includes doctor’s appointments, a medication trial, and possibly a neurologist referral next month.
Summers with our special needs kids just hit different. But we are focusing on embracing growth, fostering inclusion, and building resilience. For now, that’s what our summer needs to look like.
**Be sure to check back in a week or so, for a run-down about an upcoming training I’m attending called CBIT** CBIT stands for “Cognitive Behavioral Intervention for Tics” and is an empirically validated treatment option for kids and adults with tics or Tourette’s. I am excited to not only be able to bring this treatment method to clients, but to my own kids too.
