Some people love vacation because they get to visit interesting places, see cool stuff, try new activities, and eat with abandon. Our family enjoys all of that, but we also adore going away because of what we don’t do: stick with a schedule. When you have a child with disabilities, life can revolve around his therapies and appointments. On vacation, we’re all free.
Life was super-scheduled when Max was a tot; he got ten sessions of physical, occupational, and speech therapy a week, plus the occasional craniosacral session and hyperbaric oxygen treatment thrown in. Although the therapies have dwindled as Max has gotten older, he still gets a bunch, and also participates in various programs for youth with disabilities including:
-One occupational therapy session
-One music therapy session
-One speech therapy session
-Potentially another occupational therapy session with a different OT we just met that we will cram in somewhere because you don’t turn down sessions with good OTs who fall into your lap
-One visit with a teen friend through a Friendship Circle program
One activity program, also through the Friendship Circle
-PLUS! Eleventy billion visits to various specialists and labs throughout the year
-And a partridge in the pear tree. Oh, wait, wrong list.
We’re grateful to have a great therapist and doctor team for Max, along with decent insurance (for now, anyway). And to be sure, every child comes with their own demanding schedule; my daughter’s sport practices and games occur several times a week during the school year, and my husband and I constantly juggle who’s going to be home from work early to drive her around.
Still, there’s no denying that we often plan our weekends and spare time around the needs of my son. Vacation is an escape for us in many ways.
On vacation, there’s no scheduling our days around therapies or visits to doctors, and no dealing with bills.
On vacation, there are no “I’m tired!” pleas from Max when he doesn’t feel like getting OT after school and no “Cristy’s waiting for you in the living room!” nagging from me.
On vacation, there is no homework to pore over with Max, going over the same material again and again and again because that is how he learns best.
“Expose him to as much as possible,” Max’s pediatric neurologist told us after he had a stroke at birth and suffered brain damage. Vacation is as therapeutic for my boy as his physical, occupational and speech therapy sessions. Released from the demands of medical appointments to enable his body, Max has time to enable his mind and soul. He can explore different surroundings, have adventures (swimming with jellyfish in Florida, taking a jeep ride through the desert in Arizona) and eat his body weight in ice-cream.
To be sure, Max’s cerebral palsy comes on vacation, too, and my husband and I are there to assist him with life skills, massage his muscles, cope with the occasional sensory meltdown if a place we’re at is very crowded and navigate unfamiliar terrain that can trip him up. Depending on where we’re going, I may have to call ahead of time to see if a teen program will accommodate Max. Sometimes we have to deal with unaccommodating places, which is always maddening.
Yet even when we’re just going on an overnight trip to the beach or to a friend’s home, we are free.
On vacation, we feel typical. Vacation is the great equalizer for families of children with disabilities; like any other family, we wake up whenever, roam randomly around, check out local restaurants and quibble over what to do next. My children are just like any children having adventures, splashing around in the pool and generally loving life.
-Ellen Seidman, Love That Max