Disabilities and the service people we work with

Welcome back! So today may seem like a little rant (sorry for that) , but sometimes we need to. It is very difficult as a parent never mind a single parent trying to navigate through all that is necessary to ensure that your child, sibling, or any family member lives there best life. Especially if you work a full time job on top of it, but unfortunately this is our life.

Worry is part of my everyday. Making sure I’m making all the right decisions from services, to programs, to medications, doctors, activities. Never mind just regular life things groceries, paying bills,laundry, cleaning house. Sometime I surprised I have not had a nervous breakdown yet (laughing).

But as the old saying goes if I don’t do it who will. You would think that people that are suppose to be there to help you make these choices from agencies that you have to go through would make things easier for you. In my case as I’m in the transition period were my son has turned 22 years old it seems I have to do more and more then ever before.

Sometime it’s real stupid things that I get bothered about but then theres things that are more important that always seems like a last minute thing that they want you to do right away. Communication seems to really be lacking in a lot of these places. Now don’t get me wrong I do understand that some places are under staffed and my child isn’t the only one, but at the same time this is there job to inform people of:

1. Changes- If theres going to be a change to the schedule or they are going to go with a different staff member. I think its important I would like to know were my son is and whose he’s with god forbid if something happens, I think he’s one place and he’s actually some were else.
2. Transportation- If transportation is running late for whatever reason rain, snow, accident, etc I think it’s not to much to ask for a phone call. Why do I have to call to find out were they are when my son is suppose to be at his program at 9 and they still haven’t showed up. Never mind them being late everyday.
3. Activities- When you set up activities for you son to do outside of program and the one to one leaves an hour before he is to be at activity. Why? And you get not explanation for it.

Beside things like this the program seems fine but I don’t understand as a mom how anyone could think this is ok. What if it was there child. And when you go through the proper channels to try and resolve the issues they tell you to basically handle it yourself.

Again I’m not asking for specially treatment but again I’m a single mom who works 40 hours a week and has to come home and put in another 40 hours because I have to do things that I believe these people should be handling. Don’t get me wrong cause I am not trying to pass the buck cause I know this is my job as a parent, but if I decided (which I was going to do in the first place) to handle it myself I would of then been told I couldn’t do that I had to go through the proper channels.

So in closing I will be calling the program to make an appointment to talk about these issues. I will keep you informed of how that goes. Thanks for listening!