There are so many things sometimes that people don’t think about, that it would be nice to do. Like, it would be nice in the evening, if I had to run to the grocery store, or go to the library, that I could just get Dear Son in the car and go. Just have him walk to the car, get in and leave. That’s it. I wouldn’t have to pack any bags, change any diapers ahead of time, or do anything. Just get in my car and go. I can’t really leave for errands anymore or for anything really with him, without some assistance now but that’s not even the point. The point is that it would be nice just to be “normal”.
The other day I was talking to a woman, who had purchased a gift for her daughter’s friend’s birthday. She was saying that it was getting expensive to buy birthday gifts for all of the friends. She didn’t know anything about Dear Son and I didn’t say anything. It was the kind of conversation that you have with a stranger in passing, one that doesn’t require all the details of our lives. I listened and just kind of agreed that things were more expensive. I can’t remember ever having any of Dear Son’s classmates over to our house, ever, because it’s just too hard. We’ve never had a birthday party with kids from school or his friends, nor have we ever been invited to any with his special needs classmates in fifteen years. I do have a cake made and send it to school but when that woman said that, I thought to myself, that it was a “high class” problem she had. She didn’t realize it of course, because that was her reality. It wasn’t wrong for her to think that way and it was probably true. It’s just that when your kids are special needs, you always have bigger issues than nearly everyone else. Always. We just don’t talk about it much.
The other day, I was at a corporate client who specializes in caring for special needs children; they perform both respite care and transition care for children who are able to leave the hospital but perhaps the parents or caregivers need additional medical training in how to care for their children’s medical needs-namely vents and trachs. One little girl had just arrived. She was a foster child and brought in by her foster parent. She was frightened at first and not sure she should trust any of the adults but, more importantly, wasn’t sure she could trust the other little girls that were staying there as well. She had this look of fear on her face, then she might give a quick smile, followed by the "fear face" again. The staff member tried to make her feel more comfortable saying she was here for her very first sleepover, to which I added, that she was on a “big girl” weekend. Her father proceeded to make umpteen trips to the car to get all of her “supplies” and things. She was only four or so but had never been around any children and had no siblings. She hadn’t been around any other children, because kids don’t come over to the house. They don’t come over because, it’s just too much work. I wrote about this issue some time ago here. I imagined for a moment how different she might be, if she had more interactions with other children. I imagined how it might affect her self esteem, her personality and her overall development. I imagined how it impacted all kids like her. If we had daycare for special needs, and integrated them in with normal kids, it may not be an issue at all. But they aren’t normal and they don’t do normal stuff. Other kids get to sleep over at a friend’s house, special needs kids sleep over at a Respite House with people they don’t know. I have a friend in another state that has two normal kids and one that is special needs. When they go away for a day, the normal kids stay with their grandparents and the special needs child comes with them or goes to Respite care. That’s the way it is. It’s not a bad thing, it’s just different. I am not sure you could have another special needs friend sleep over. Not only would it be too hard, I think another parent would think you were totally nuts asking if their kid could stay at your house, because it's just not "done" for special needs. And I can’t imagine having the pressure of making sure that I could meet all of the kids special needs, let alone the liability factor. So much for the normal stuff.
This weekend, a family member is having a cookout on Sunday for Memorial Day. Dear Son and I were invited however I am not certain I can lift Dear Son in the car anymore so I am having to figure out some options. While it’s possible that his Dad could take him for the evening so I could go alone, I don’t want Dear Son to miss out on a family outing. He would really enjoy himself and they would enjoy seeing him too. It’s possible that Dad will come over and attend with us, which would make it easier, since he has an SUV and the wheelchair fits in the back and Dear Son fits better in his car, let alone Dad’s big muscles to lift him into the car. Those 21 inch biceps come in handy for that. The family member offered to switch the cookout to another weekend, when I didn’t have Dear Son, to make it easier for me so I could attend, but I declined. I’d rather Dear Son attend and enjoy the day with us.
But it’s not about solving all of the issues that we face with our special needs kids. It’s about wanting things to be easier, for us and for them, for just a day or just a moment in time. Things other people take for granted. And just once, I’d like to complain that it’s too hot to sit on the bleachers and watch him play soccer.