It is very early Sunday morning. I woke today at 4:30 am and laid in bed, my mind just going a mile a minute. There is so much on my mind and heart. The voices in your head are pretty loud that early the morning. There is much to think about.
Ever have a restless night because you simply can’t still your mind? That was me last night and it has been happening more and more lately. There are many emotions that are at play as I lay in bed thinking the biggest two are fear and loneliness.
Lately I have felt very very alone on this journey so much so that I can not even adequately put into into words. I think part of it has to do with the holidays and it just being my daughter and me. I miss family. When I was younger we always had large groups of family and friends for the holidays. I had planned on going to Nova Scotia this Christmas, but our plans fell through as money is just way too tight right now. I hate not being able to give my daughter a family Christmas.
Fear has also been creeping in as it relates to both work and my daughter. When you have a daughter with special needs you are always waiting, advocating or ready to pull your hair out at least that is me. As of February there is not a current plan for my teen who is in grade 9 in the Toronto District School Board. For over a year the board has known my daughter needs support and even though she has a dual IPRC they have not been able to find a proper placement for her. A section 23 class placement was advocated for her by her doctor in June, we are still waiting for a spot as every single section 23 spot that she would qualify for is full till next September. So for the last semester of this school year there is no placement for Rachel. She has been inadequately placed in a Safe Schools environment since September. She was the first grade 9 student ever to start high school in the TDSB without ever attending a classroom. I worry about her future. I worry about getting her the supports that she needs.
Then I worry about money. Raising a child with special needs is expensive especially when you do not have a job that has a benefits package attached to it. My daughter’s therapy and medication every month are almost equal to my housing costs. Why private therapy? Because the wait times to get into programs that would help my teen right now are more then a year long. Really sometimes when I am advocating for her, I feel like I am banging my head against a wall. Sometimes I have thought about leaving my job for one that pays less if it has a benefits package that would help. I never knew healthcare costs here in Canada were so high, but they are, especially if you choose not to wait a year or more when services are needed like yesterday.
Yes my mind is a buzz and I am not even sure writing it out helps, and I know there are so so many who are in far worse situations, and I know I still have much to be thankful and grateful for but for me these are the things keeping me awake at night.