We have a son with special needs. Leo is intellectually disabled amongst a variety of other disorders. He is also compassionate, affectionate, polite, obsessed with sneakers and High School Musical and tries hard at everything he does. Unfortunately, his disabilities makes him a challenge a good deal of the time. As a couple, my husband and I tend to divide the kids up so that one parent has Leo and the other parent has Oliver and Ginger. That way the rest of the kids get some attention. Most of the time Dennis has Leo.
The other day I had Leo all to myself and I tried to really savor it instead of just trying to make it work. I had kids at work, school and camps so Leo and I were left to adventure on our own. We had just dropped off Ginger at a library class. My original plan was to stay at the library in air conditioned book reading bliss, but Leo said, "I can't just stay inside all day!". Although staying inside all day is
my favorite thing to do, "New Outside Adventuring Blogger Diana" knew I had to seize this chance. So we went for a walk through town.
Since I decided to take on the challenge of going outdoors once a week and blogging about it, I have tried to focus on what I see, hear and feel when I am outside. At first that is what I did. I was fixated on the noises of a town full of traffic and of course, I was thinking about how painfully warm it was. Quickly though I began to focus on Leo and how he was experiencing things. He was terrified. We don't usually walk around in places with so much noise or traffic. He held onto my hand like it was his lifeline. As we approached an intersection I thought he would enjoy pushing the button to make the light tell us when to walk. He liked pushing the button but was frozen at the prospect of crossing the street. To make it worse, the light never changed and we had to walk when it said not to. Being Leo means being trapped in a brain that doesn't work like other eleven year olds. It means being confused a lot of the time and that means being vulnerable. My heart was breaking for this child I love so much and am so often frustrated with. I held his hand tighter and we crossed the street.
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Leo |
He never let go as we went to the post office and mailed a letter to his sister in college. We headed back towards the library and I spontaneously pulled him into a toy store for a peek. The store was a darling, quaint little place with toys in the back and a candy shop up front. He never asked for anything and just delighted in looking around. He asked what certain toys were for. Again my heart was breaking. Leo doesn't really have an imagination. He doesn't play with toys. He does sports and he does them well because they have rules and expectations. Toys don't work in his world. We walked into the candy section and there I found my idea of Heaven. They had candy form Great Britain! It was like a flashback to my childhood visits to my family in England and Wales. I had to have it. I selected a few of my favorites like Penguin bars and Refreshers. By then the shop owner had begun a chat with Leo and was showing him the playroom where she hosts play groups and classes. He said that he wanted to go there and I had to explain it was for younger kids. He offered to come and help her run the classes and take care of the kids for her. I understood then that Leo is not really aware of his limitations. He truly believes he would be an asset to her business. My heart tore a little more. She told Leo that she was offering a creative writing class to kids his age and he got very excited and asked if I could bring him there. He kept telling her that he had very good handwriting. I knew he couldn't participate in a class like that, so I told him we would have to discuss it. Again, my heart was aching.
As we were leaving to go back to the library, his hand found mine again. I asked him what my favorite thing to do was. He answered, "Hold my hand". He was right. I think he was relieved when we navigated the crosswalks and arrived safely back where we had started. At the library a toddler was playing in the children's area and Leo was eager to talk with him. The boy couldn't say any real words yet and that suited Leo just fine. Leo acted like he understood everything he said and found a ball to entertain him with. This went on for quite some time while the boy's mother and I chatted. When Ginger's class was over and it was time to go, I told Leo that we were going to head home. He looked at me and said, "I can't leave. The baby needs me."
Although I didn't really experience the Great Outdoors on this adventure, I did really learn things. My Leo sees the world as a very different place than most of us. He is vulnerable and trusting and everything is big and important. When I took the time to see things through his eyes my heart broke, but holding his hand helped put it back together.