Advocating and the Challenges

We all know the tiring process of advocating for our special children. It can be exhausting and feel like nothing but another battle. That’s what I have found myself calling some of these instances, where I have fought for her needs.

I feel like my daughter's entire life has been a battle of advocating over the years. Somehow, I have the strength within me to not give up and keep fighting. I feel I have been divinely guided in many of these instances. Finding ways to proceed in which I ended up “winning” to my surprise.

I sometimes felt alone in this process, only to discover there was much help out there. There are rights we have that the schools never tell us.

We must dig and find things out for ourselves.

We can request an IEP meeting (or any school meeting) at any time to review our children's needs. We have the right to make any changes we feel necessary and to ask for any needs we feel our children have. If they are denied these needs, we can appeal.

My daughter had PT and OT all through elementary school. When she entered junior high school, they took both away. At this time, she could not do the buttons on her jeans, so I had to replace the buttons with Velcro. The Velcro never lasted. I asked the school to give her OT so she could be taught how to do her buttons.

I was told “no” and ignored.

I finally wrote a letter to the State of Michigan with her needs, I also included the superintendent, along with the principal and her teacher.

I was provided with a meeting which everyone in the letter attended. The principal looked at me and said, “you did not have to do all this”. I was floored that she would say that because she ignored my requests. I told her “yes, I did, you chose to ignore me.” My daughter was provided the OT she needed to do her buttons and was able to button her jeans within 2 months.

I share this story because it is a reminder to me to never give up when she has a need. It took about six months to get that resolved, but I did it and it gave her so much independence.

There are many more stories. The point of this is to remember to seek out the help you need and never give up. Connect with other parents who have children with special needs, especially those who have been on the journey longer than yourself.

They have the best advice, and we can learn what to do and not to do from them.

There are advocacy groups who will help in addition to attending school meetings. In the State of Michigan, we have the ARC - The Arc | For People With Intellectual & Developmental Disabilities. I have called them many times even if it is just for advice or information. They have attended IEP meetings with me.

I know some parents have had to go as far as obtaining an attorney to help with advocating for their child.

I am not sure why there can be so much difficulty with getting their needs met, but there is.

I suppose it boils down to the cost and not enough staff to help.

With insurance companies, it can be more challenging. I am beginning a battle to get my daughter more PT so she can gain independence. Insurance feels she only needs a certain amount. This is a longstanding issue for her, and she needs all the help she can get.

“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”
-Thomas A. Edison