Saturday we loaded in the car to go on a family shopping trip. Brian and I rarely leave the house together, as we have busy jobs at different hours of the day and end up lounging at home more often than we go out and about as a family. We headed to the home improvement store and explored the glossy, wide aisles of the fencing section. Our house sits on five open acres of dirt and sage, and we need to corral Erik and create a space we can enjoy outside without constantly chasing after him, fearing he will run into the busy road. After putting my stamp of approval on Brian's choice of fencing materials, we went to the sporting goods store, as we were both in need of new athletic shoes. Brian and I tried on shoes while Erik stuck his head between the shelves. He worked his body in so far that just his plastic orthotics were stiffly jutting out from the dark space, generating some strange looks from shoppers passing by. He was a complete handful in the store, lying down on the cement floor, fighting to get to the wheels on other shoppers' carts, sobbing when we told him no, and being a general pill. When I tried to detach him from underneath a random shopping cart, he went limp and refused to stand up, falling into a dense pile on the floor. When I stooped down to his level and tried to talk to him, he laughed and then cried. Communicating with him is so damned difficult sometimes. He's too heavy to scoop up and tote around for more than a minute anymore, so I end up dragging him as he refuses to move, falls all over himself, and looks up at the ceiling or protests. Once he understands I'm unhappy, his sensitivity sometimes kicks in, and he cries. He's a typical 2-year-old in many ways, but WS sometimes is a very thick wall through which I can't seem to reach him. I certainly am unable to explain consequences to him like my friend is able to with her typical son his age, although I try. He simply doesn't understand the concept. I imagine this will get much better with time, but at that moment I felt like going home and sobbing. Brian and I both found ourselves frustrated and exhausted. We cut our trip short and went home to escape the heat. On the way out, the checker fell in love with Erik. She was a young, slightly snotty thing who likely would not normally give me the time of day. She stared at him for much longer than socially acceptable and finally asked me his name. He called her "love bug" as we gathered our purchases and turned to leave.
Fighting more pain blooming in my eye socket from the heat, I came home and napped briefly on the couch while Erik played in his room and refused to sleep. Brian cleaned out the garage. The other WS family with a son Erik's age made it to town and called later in the afternoon. Earlier in the week she left a message on the answering machine concerned about certain local restaurants being too noisy for Erik. I laughed out loud at this because it was so sweet and refreshing someone would think of this and then mention it so casually. I LOVE being around other WS parents. We agreed to meet at a local brewery with family dining. Living in a tourist/resort town has its advantages. Although we rarely go out to enjoy what is here, there are a multitude of restaurants and fabulous little shops to enjoy if I'm ever in the mood to explore them or want to take a guest out. This particular eatery is a very woody, lodge-style building in the pines that covers 6000 square feet and has a casual feel to it with big screen televisions and patio seating. Tina, Marco, and Brandon were already inside when we arrived, and we made ourselves comfortable at their table. Brandon was busy with crayons and paper. Although he seemed much more skilled at using the crayons than Erik is, he was more interested in waving the paper around and occasionally using the crayons as projectiles. He was noticeably much more expressive and animated than Erik and readily offered beautiful, bright smiles. Erik sat stiffly by Tina, who was wonderful with him, making sure he didn't fall out of booth and feeding him Marco's french fries. To me, Brandon seemed more "typical" than Erik did in his behavior. However, Tina told me she was impressed with Erik's verbal skills and crisp enunciation of words. Although Brandon seems to express himself quite well, he does not use words like Erik does. I suspect he doesn't need to at this point and that if he played with Erik more often he would either get completely talked to death or begin talking more himself. Although the have the same syndrome, they are definitely completely different children with their own strengths and quirks. Brandon is not plagued by sensitive hearing and seems much less rattled by the outside world than our son does. In this way, Erik seems more severe to me. Physically, Erik is much larger with his version of my lanky, slightly clumsy limbs. They seemed to enjoy each other's company, although their interaction was minimal. Tina and I compared the boys out loud and asked questions without apology, and it was quite comfortable. While other mothers seem to silently compare their typical children at the playground, I have found that when I'm around WS mothers, we are much more open about comparing our kids, as this activity is not meant to be competitive but serves as a way to determine where we stand developmentally and even what there is to look forward to. Since the opportunity doesn't present itself on a daily basis to be around other children with this syndrome, we seem to enthusiastically take advantage of it. Being with these parents makes the daily struggles we face alone much of the time completely normal, and I need that. It's something that it difficult to explain here, but there is nothing quite like it. Of course, I fell completely in love with Brandon. He is completely adorable. We had a very short visit, and I left wanting much more time with them. I'm hoping we can meet here and there so I get to know them better.
Yesterday Erik and I went to school. Erik enjoyed class, and I was one of two mothers in parent group. Before the other mother arrived, the moderator told me I was such a great mother and she just couldn't understand why I wouldn't want to have another baby in order to have a "normal" child. Thankfully, the other woman came in and sat in the chair to my left, cutting my bewildered answer short. It's a horribly painful subject for me, and I deeply resent always feeling like I have to defend myself.
After class I drove Erik over to a house north of town in a new, well-to-do neighborhood to check out a daycare provider. We have decided to place Erik in private daycare one full day a week. After a quick tour around the first floor of this home and meeting the other children who would be playing with Erik, I gave his new provider one of the WS cards in my wallet and explained that she would have no trouble taking care of him but made her aware of his sensitivity to noise and the fact he is very delayed compared to the other children in her care. I told her I would leave his orthotics off the day she has him so she wouldn't have to deal with them. Erik found a collection of toy tractors and trucks and made himself at home immediately with one in the corner of the dining room away from the other children, although he initially greeted them with hellos and smiles. When I retrieved him so we could leave, said our goodbyes, and began walking back down the driveway, I felt a little sick to my stomach. Everything seemed perfect, but I rarely am away from Erik for more than four hours at a time. What will I do with an extra four hours? I reminded myself that this would be incredibly good for Erik and looked down at my toes.
I suppose this means more pedicures for me.
Labels: Brandon, daycare, school, support system, Williams syndrome
