I know. It’s only the end of February, however I start my annual plight to find summer programming for my daughter. For my “normal” son, it’s easy to find day camps, and fun things to do. For kids with PDD-NOS, autism, or anything like it…this area has nothing. I am not exaggerating…there isn’t much here for a 13 year old, too high functioning, not functioning enough, too big child – to do. There can’t be anything worse than summer for my kid. The structure is gone, and the schedule is messed up. She is, dare I say it, AWFUL in the summer. Summer used to be a time of relaxation, beaches, fun, and vacation. For this family, it’s a serious cause of emotional turmoil that starts now.
Most 13 year old children would be able to stay home for short amounts of time at that age. This does not happen for those of us with kids of special needs. I am not sure she will ever be able to be alone, and I don’t say that lightly. It scares the heck out me. Someday, her brother will be able to stay home with her, but I am not even sure I could place that burden on him. He takes on the weight of the world already, and I am going to try and lighten his load as much as possible as he grows up.
You can’t imagine the cost of trying to get someone to come watch your child for long periods of time. Last summer, while I was working in a job I hated, I spent close to $200 per week for her. (and that’s pretty cheap!) This brings me to my original thought of why there isn’t more programming for kids like her. With the statistics growing every day…there seems to be a growing need for summer programs. She is somewhat functional in school, and has the capability and the need to learn. She loses more ground than any “normal” child in the summer. I have tried to think of possibilities for her, and even tried to come up with a plan for day-care. To be honest, I can hardly take a stinking shower, get dressed, tie my shoes, or blow my nose without her needing me, so making big plans like that is just not feasible.
So today it begins. Today begins my annual search for something for this child. With the constant need for attention, this momma will need some breaks from the daily ASD world of Phoebe. I will find something, and hopefully I don’t have to sell my soul to send her.
Phoebe ASD World 