There are days, like this past Sunday afternoon, when I look at my little boy and I think all this special needs talk must be a big mistake. I look at him, his blond hair and beautiful blue eyes, shining so brightly on an usually warm September afternoon and I forget. I forget about his challenges and our hard days as a family. How could this sweet little boy, all smiles and dirt covered knees, be anything but a typically developing four year old? I wash away terms like special needs, developmentally delayed and nonverbal. I push back worry and fear. I relish that moment from afar, watching my little boy just enjoy a beautiful fall afternoon playing in our backyard. But then I am snapped back into our reality, when my little boy starts laughing and smiling so brightly because he found his one true joy....a cut off piece of garden hose. A beat up looking piece of green hose.
My picture perfect moment was replaced with the reality of having a little boy with some pretty intense special needs. Brady has a duplication of his first chromosome (1q44) that has resulted in global developmental delay, hypotonia, cognitive impairments, being nonverbal and having sensory issues. Lots of sensory issues. Brady isn't a fan of crowds, lots of loud noises or chaos or too much hugging or cuddling. Brady is very oral. He will put almost anything in his mouth, he chews on his shirts incessantly and licks walls, shopping carts and every window in our house. And now he chews on a green garden hose.
Sensory issues are complicated. Sensory issues are frustrating. Sensory issues really can make a child stick out like a sore thumb. Brady's have gotten more prevalent as he has gotten older. Brady has always had some behaviors that may seem out of the ordinary, but Brady has always been beautifully unique. He has spent years obsessing over blinds cords. He chews on them and pulls them up and down, over and over. He has always had a "thing" for strings. Now, he has one giant, rubber, string....well, not a string, but a hose and the concept is the same to Brady. He needs something to drag around, chew on, twirl and give him a sense of calm. He needs this. That is what sensory issues are all about. Finding something, sometimes something a little out of the ordinary, that brings peace to a little mind that is constantly in motion.
Now, Brady has the hose. A bright green hose. We are not exactly sure where the green hose obsession came from. Sometime in early spring, a backyard garden hose caught Brady's eye. He has always felt more at home outside than in. I think it is a sense of freedom that he doesn't often find in a classroom or inside our family's four walls. He comes alive outside and has always enjoyed walking around the backyard, peering through the fence and exploring. He still loves all of that, but now he does it with a piece of hose in one hand, and the rest of the hose in his mouth. It sounds funny. And yes, it looks a little funny. We have tried everything to break this habit. We have slowly cut off pieces of the house to make it shorter and shorter. We have tried hiding it in the shed, but the frustration and agony on my son's little face, is too much to bear and we give in. Sometimes, if he can't find the hose right away, he will whimper and stumble around the backyard going from one end to the next. Until he spots it. A twisted up piece of rubber garden hose. A little dirty and sometimes hidden deep in the plush grass, but it can always be found by my little Brady. Oh, and the look when he finds it. A look of pure joy. A sense of calm washes over his face. His face lights up and he is content. My husband and I have said to each other, it is almost like he is in another world when he has his hose. He doesn't notice much around him, but his smile is contagious and as much as we want to throw that hose away, it is hard not to smile watching him swing that green hose over his little head. When he gets going, the green hose spins swiftly above his head, almost like a lasso. My sweet eight year old daughter looked at her little brother with such curiosity earlier this summer and simply stated..."I think Brady may be a cowboy when he gets older." Maybe she is right.
There are rules in place when it comes to the green hose. It must stay in the backyard, never in the front. It must be put down before Brady's goes inside. It must be cleaned up sometimes and it has to be dropped to the ground before Brady attempts to climb anything. But otherwise, it's Brady and his geen hose, hand in hand and quite content.
At our last neurologist appointment, I shared my concern about the green hose and Brady's passion for it, and not much else. I was worried and confused. A hose. Seriously? How could this be what settles my son's brain, puts his anxiety at ease and makes him smile. We have bought every possible toy you can think of and Brady discards them all. We have an old garden hose laying in our backyard and it truly becomes Brady's best friend. Our amazing neurologist, full of patience and fresh ideas, looked at my son, my beautiful son and said, "can he get hurt carrying around and chewing on the garden hose?" I looked at her like it was a trick question and I should be careful of my answer, but I saw her smiling at me and we both knew the answer. If the hose helped. If it brings him a little calm to the chaos that swirls around in his head. If it makes the anxiety disappear. If it makes him smile and giggle. If it quenches the overpowering sensory urge to chew on everything. If it does all this, well, then the hose can't be all that bad.
After our neurology appointment in August, I let myself calm down a little bit about the hose. The Doctor said to let Brady be as "oral" as he needs and to let him work out his sensory processing issues in whatever way works best for him. So that is what we are letting him do. I still struggle with seeing my sweet little boy carrying around a six foot piece of hose. I still struggle watching my son dealing with anxiety and not being able to communicate how it feels. I still struggle with knowing that my son would rather spend his time with a long piece of green rubber than with his mom, who is aching to have her son run up to her with the same big grin the hose gets. But, as hard as sensory issues are, there is beauty in being able to find something, anything to help my son cope. We still take it day by day, but if the green hose makes the days a little easier for Brady, then I say, welcome to the family green hose.