by When your kid has in essence lived in a bubble for most of his life it often takes some conscious effort to try to remember to expose them to things in the outside world.
When your kid has in essence lived in a bubble for most of his life it often takes some conscious effort to try to remember to expose them to things in the outside world.
Kids experience the world around them as they grow. The basic things around us are just as, if not more, important than the big things. But when kids and babies spend so much time in hospitals or sick or trying not to get sick they don’t see that outside world as much as their peers do.
A friend of mine just took her special needs kid to the zoo. As we were chatting about it she said that her daughter “was more interested in the trees than the animals” because she had never seen a tree firsthand before.
I think that’s the best way to sum it up. The world in your backyard can very well feel like a zoo to these kids that have lived in their bubbles most of their lives.
Unless you take the time to show a kid, they really don’t know what rain is. Or grass. Or rocks. Or dirt and bugs. They don’t know what hot or cold is. Or wind. They only know that a car is what we take to doctor appointments. And that a shopping cart is just that red and yellow toy that sits in the corner of the basement, waiting for them to be strong enough to use it.
Normally kids experience these things in everyday life – trips to the park, playing outside with siblings and neighbor kids, shopping with mom and dad, playing with other kids at daycare, walking to the mailbox, etc… things that are integrated into everyday routines. But those opportunities can take a lot to create for kids who have weaker immune systems, who aren’t as mobile, who need medical care, who take FOREVER to get ready to leave — making sure all their specialized food, meds, equipment and emergency care items are packed and ready to go.
You can’t just open the backdoor and tell AJ to play in the yard while you weed the garden. He can’t run ahead and try to get the mail from the mailbox while you walk behind him. He can’t run freely around the park exploring while you watch cautiously from a park bench. He just can’t do things like his peers quite yet.
So when you take him on a walk and see rocks and suddenly realize that even though he knows the sign for rock, the only rocks that he’s ever seen are on TV… you stop and take a moment to look at rocks.
Or when he is getting ready to take a walk with his nurse and it starts to pour down rain instead, she makes sure he sticks his fingers (and head for a moment) in the raindrops and sits on the steps to be able to experience it.
Sometimes it’s a lot of work. Sometimes you just don’t want to load him up to go places. Sometimes the fear of “what if he gets sick” can be very consuming and can win out, especially as he’s lost so many peers to things as simple as a common cold. You have to be okay with flipping on a suction machine in a quiet restaurant and enduring all of the stares. You have to be prepared for the risk that a plugged feeding tube will spray food all over or that he will cough until he gags and pukes. You have to be prepared to do an emergency trach change or even possibly bag your “baby” in a crowd. You may find out he has allergies you didn’t know he had… There’s a lot of anxiety in just getting outside of that door.
But when we do get out, the look on his face, the big smiles he shares, repeating signs over and over as he names things in the world around him that he otherwise would only have seen in pictures and movies, how he just lights up and seeing how he really truly soaks up everything around him makes it is so, so rewarding.
