Contributed by Heidi:
When I had my first son, Travis, (who is now 12 1\2) summertime meant that he and I could pack up and go to the beach on all my days off. With Ethan and his RS, days off look very different. Instead of sun and fun we have therapy appointments and Doctor visits. I sometimes wonder when the relaxed days of summer will come for him (and Me for that matter!). Well, this past Monday was a rare morning that we didn't have anything scheduled until 2! So I packed everything the night before, woke the boys up early and off we went!
Having a child with balance issues makes walking on even and uneven surfaces difficult. You are constantly on guard with a hand, arm, leg, knee, hip and elbows and eventually you are not even aware how much your body is in tune with them. It becomes such second nature to stop a fall, fumble, catch them in a trip or spin without even realizing. A curb or steps become an enemy in an instant. And let’s face it, what six year old wants to hold hands with their Mom??? If I hold his hand my entire wrist, arm and shoulder is braced for impact. I find myself a lot of the time holding his wrist as it is easier to regain his balance for him with a sturdy wrist then a tiny hand and fingers that so easily can slip from my grasp.
On Monday I found myself loaded down with beach supplies and unable to hold his hand (wrist). With any other child I would ask him to hold on to the cart I was pulling but this doesn't work for an RS child. This seems to trip him up more as he grips a shopping cart or stroller. So Ethan had free run to get himself across the sand to the perfect spot we had sighted.
There were many falls in the sand (as you can imagine) as we made our way but we got there! Set up our spot and off into the water! I brought his life jacket, which he definitely needed. In came the first wave and down he went. Second…wave down he went again! And so on. Its very difficult to pull him to a standing position (it doesn’t help that I just had major back surgery at the end of march) and as the waves tried to take him back out I think the visual effect also takes a toll on him. We played this "game" for a while and decided to build a sand castle. He wanted to fetch water for the moat but this proved hard for him too! Those waves were determined to take him out!
He decided it was time for some lunch at which point he decided his sensory issues would come into play; the sand then became the enemy. For some reason it couldn't be on his feet while he ate. It became another "game" of washing a foot in a bucket, setting it back in sand to clean the other foot then realizing the first foot was sandy again....
We ate sitting at waters edge so waves could wash us as we ate. I know the other mothers around me were most likely criticizing me under their breaths, since we were not conventionally sitting on our blanket. But for me if we were sitting and having a he was sitting and couldn't fall.
Needless to say it was a long morning. We packed up and headed off to therapy where I sat (and maybe even dozed) for his 2 sessions.
I plan to do this again this monday....