Who helps you?

At the beginning of this journey, I was so different than I am now. I thought I could do everything. I was a total control freak. I wanted a part in every therapy, asking for therapy suggestions at home, constantly talking and planning with teachers, driving to all the appointments, never being late and freaking out if I was. I never asked for help, and tried to have control over everything that had to do with Eden's education and development. Obviously, this took a huge toll on me and our family.

Slowly, I started to realize that the way I was living was impossible to keep up. I had to make some tough choices. It was certainly the most difficult thing I've ever had to figure out. The first thing I decided was that if I'm a little late, it's not the end of the world. I had always tried to plan to be a couple minutes early to all of her appointments. Between travel time, meltdowns, and just the fact that our schedule was so planned out I decided to let go a little control. A BIG step for a control freak like me.

When it came to therapies, I do attend one OT therapy session a week with her. It is actually her favorite therapy and I enjoy seeing her progress and smile. When it comes to school therapies I'm alright just letting them do their jobs and once in a while updating them on things that I feel they should know. I don't freak out when I don't hear from them every week. If I need them I ask them for an update.

As for in-home support, it's been one of those up and down kind of situations. I don't know why she gets into these moods where she won't even look at my BHP. Sometimes she gets to the point where we just need two people to control aggression and meltdowns. The things that are different is I'm confident in how my BHP will handle her behaviors and aggression. I don't have to go look when Eden sounds upset, I let her take her out for walks and don't have to worry about her.

I am no longer driving Eden to school. This was the most difficult for me, there is a volunteer program out there for children and adults with special needs and disabilities. There is a screening process and when it comes to children they usually try and put them with the same driver everyday. So, I put my baby in a car and she gets driven to school every day. She has a wonderful volunteer who just thinks she is the cutest thing. It saves me a ton of money in gas and an hour of travel time. There have been a few hiccups in the road to get everything figured out but no matter what she has always been safe and happy with her volunteer.

There is a point that we got to in our house that everything is not a "therapy" situation. Most every situation there is a learning curve that we are usually on the wrong end of, but we have let go of the idea of making the most out of every situation as a learning situation. I've decided that the more I push her while at home the more exhausted we all were. I do still expect certain things like: full sentences, no crying while talking (she does this every time something doesn't go her way), sitting at the table, trying new food, and not being aggressive. Which seems like a lot but it's what I expect from all my children, and expecting her to behave like them is not up for negotiation.

Everyone that works with my daughter is special. They have all made their mark in her life. Made her a better and more productive member of the world. Some get paid for their work and some do it out of the kindness of their heart. Volunteer or not I always thank them everyday for the work they do for my children. My children are so special to me and it really does make a difference if they know they are appreciated and doing their job well.