No Boundaries

Sunday evening I was driving down a residential road with Charlotte and Ben, and slowed down when I saw a couple walking their dog. It was dark, but I caught a glimpse of the dog and saw that the dog had hind wheels instead of hind legs. I told C&B this and they both immediately said “Ohhh!” and “That’s so sad!”. But I said, “Ben, that dog isn’t much different from you. You use a walker with wheels to get around, and that dog uses wheels too”. This completely changed the conversation. Ben said “Cool! I wonder if the dog can do wheelies too?” I just laughed. And I thought, I’ve got to get Ben a dog.

Ben and Grandpa with Daisy Bear, August 2012

In August, my parents visited with their Golden Doodle puppy Daisy Bear. I am highly allergic to dogs and apart from our neighbor dog Jake–who literally just comes into our house as any neighbor child would do–dogs are completely forbidden in the Elwy home (somehow I just can’t say no to Jake). But my parents had been assuring me that Daisy was no ordinary Golden Doodle. She is, in fact, nearly all (black) standard poodle, so she has very little golden retriever in her. I knew the kids would be thrilled to see Daisy, so I relaxed my rules. Daisy traveled 700 miles, through Canada, with appropriate immigration papers, and hung out on Laurel Ave for a good six days. I didn’t sneeze once, and the kids were very, very happy to have a dog in the house.

Dogs and disabilities converged yesterday. Sherin told me about an article he read in the UK’s Daily Mail online about a 7 year old boy named Owen, who has Schwartz-Jampel syndrome, and how as he became aware of his condition, he was afraid of going out because he felt so different from other kids his age. His father helped Owen adopt a 3-legged dog, Haatchi, and since then, both Owen’s and Haatchi’s lives have improved dramatically. You just have to look at the pictures in this article. All children with SJS have similar features, but Owen and Ben could be twins.

But it gets better. I’m thinking “Owen, UK, SJS, email…I think I know this family!”. I weeded through bazillions of emails today and sure enough, in May 2010, Owen’s mom Kim sent me an email. She had found us when Googling Schwartz-Jampel syndrome and wanted to connect to find out what we were doing for Ben. Although SJS is a very rare condition, since 2003, when I first began writing about life with Ben, I’ve had 1-2 families who have a child with SJS each year contact me so that we can share information. It was one of the many reasons I started writing this blog.

Kim is not featured in the Daily Mail article, and indeed, we can attest to how raising a child with a serious medical condition takes it toll on relationships. But clearly both parents are very involved in Owen’s life–but maybe not more than Haatchi!

I’m now going to have to weed out that NEADS application that I picked up from a representative at the Federation for Children with Special Needs conference many years ago. I think it’s time we think seriously about a therapy dog for Ben…or maybe, as Owen did, we create our own therapeutic situation. Maybe Buddy Dog will have a bonafide standard poodle just waiting for us, if I try hard enough. He or she won’t have to have wheels, or a certain number of legs. The unconditional love that flows both ways is what anybody needs.