When I was told my son had some special needs, I wasn’t devastated. I had grown up around people, including my mom, who worked with kids who had special needs of one kind or another. I had also worked with kids who had special needs myself. I knew a few people with kids who had special needs. My son’s needs weren’t extreme and we can do a lot to help him. As our journey has progressed we have learned he may have a few more needs than we originally thought.
We have started doing more and more therapies and therapy related activities suggested to us by his specialists. We do therapies at home, but the therapies where we go into an office or other location for an hour or two a week are obviously the most time consuming.
I haven’t ever felt sorry for us. We have met many families in our therapy sessions who have it much harder and who’s kids have to struggle much more. I have met parents who will effectively have “children” the rest of their lives, or who have 37 year old or 42 year old children who still need to be dressed, groomed, bathed, carried, etc. I just see my son as perceiving the world a little differently and needing some extra support. I consider us pretty lucky on a “special needs severity” scale. (I made that up, by the way.)
Recently though, I felt a little bad for my son. Looking at this summer I was trying to decide whether or not to do a few day camps for him. He has really enjoyed them in the past. His first summer after preschool the specialists had suggested we do summer day camps to help him keep socialized. He did camp Monday through Friday almost the whole summer. He really did enjoy it and it gave me some time to myself in the mornings so I didn’t mind it. Last year we did a week long day camp 6 times, 2 therapies a week, and were out of town quite a bit. I felt at the end of the summer like neither of us had had much of a break.
This summer I don’t think we can do any camps. He has more therapy now, and we are hoping to do an extra one that only meets in the summer. He has 2 suggested therapeutic activities that meet 3 times a week altogether. We are going on 2 fairly lengthy vacations and we are going to sign up for first grade boot camp. That is a week long camp they do to help kindergartners get ready for first grade. At this point we already have therapy/activities 5 days a week and we are adding one. I have been worried about being able to do all of our therapy/activities next year when he is going all day to school, so I don’t want to pull him out for summer. Also, therapy is most effective at a younger age.
As my husband and I were discussing this, I realized that this is how parents who have kids with more severe special needs must feel. I know 2 families who have 2 kids in 5 therapies a week each. I don’t know how they do it. They can’t take off the summer or their children will stop walking or talking. They can’t loose that ground. They run around to therapies all afternoon and evening long. They are exhausted by simply taking care of their child’s daily needs and then they do all this in addition. Many special needs children are encouraged to attend summer school as well because they fall so much further behind than regular needs kids. One of these families takes a month every July and goes to the beach. They rent a beach house, the mom takes her 3 kids – 2 with severe disabilities – and they spend 2 weeks there. Then her husband meets them for 2 more weeks. She said all they do is sit on the beach/play in the water or play in the house the whole time. They don’t sight see, they don’t go touristing. They rest. I didn’t understand why she needed this until now. I am glad she gives them ALL a break from the hustle and bustle of therapy and school and everything else.
This is the first time (besides when the bills for therapy and activities roll in) that I really felt the impact of having a special needs child. It is discouraging in a way, though I know it helps him and I know he will be better off because of it. It makes me a little sad that we can’t just stay home for the summer and play in the sprinklers and go to the zoo. My mom had summers off because she worked in the school system. Some of my best memories are of playing outside all morning, coming in for lunch and maybe a break in the air conditioned room with the TV when it was really hot, and going straight back out for most of the rest of the day. Mom would do her mom stuff, and keep the Kool-aid handy. But she would also read a lot and get a little rest in herself.
Maybe one day we can have a summer like that. If we don’t, that’s ok, but I do feel a little guilty and saddened that our summers haven’t been like that so far.