Monday, 5 September 2011
With Great Power Comes Great Responsibility
Any parent will tell you that there are multiple times in your child's life when you need to come to their defense or speak up for them when they are unable to do so for themselves.... this is called being your child's best advocate.
This is a term that I hear frequently since I have children with developmental and medical special needs however it is not a role that I imagined I would have to play nearly as much as I do.
This summer I have dealt with multiple issues - doctors forgetting to repeat medication, interlock nurse refusing to write a letter for the school board allowing Nick to continue being on home instruction while he completes radiation treatment, nurses wanting to take a "wait and see" approach to side effects that we've been told are inevitable instead of starting medication to prevent terrible side effects.
Canada's Wonderland stating that they dont have any special medical passes when they most certainly do, Receptionists being tardy faxing in referrals to specialists, Therapists taking 3 months to make an urgent appointment for a child struggling to come to terms with his cancer diagnosis.... and the list goes on and on.
As a parent of children with unique needs I have developed a thick skin, I know that many professionals are not going to like me but being their friend is not my goal - getting the best care for my children is.
This means that there have been times where I have had to call and leave voice mails every day, sit in the office until someone will see me, skip links in the chain of command and seek out supervisors and just be a plain old pain in the ass until what is in the best interests of my children happens.
I refuse to apologize for this as its a characteristic that seems to be part of the natural development when you parent a child with specific needs.
Tomorrow is the start of the new school year and this means that my requirement for advocacy will increase ten fold as I now will be dealing with four new teachers, assistants, principals and other community affiliates that the school will involve to assist them.
If you were to look at my cell phone bill each month you would think that I was an overly popular call girl. Pages and pages of numbers that I dont recognize and the list of "private" or "blocked" calls is extensive.
I have gotten used to answering the phone and hearing
Can I please speak to _________'s mother please instead of Hey Cass how are you but I know that its all part of the package.
As the title says With great power comes great responsibility and while that wont always make me popular it will always make me feel as though I am doing right by my children and that will always be a better feeling then being liked by people who wont remember me a year from now anyway.