Saturday, March 21, 2009
I should be used to this by now but it still perturbs me. Everything for Elizabeth requires a fight, nothing falls easily into place, it is like we are the first ones to travel this road. Accessing services and support in the 21st century should be without major obstacles. It seems like every developmental step requires a fight to get to the next level, enrolling Elizabeth in a pre-school was beyond difficult. I hate having to be 'that Mom' but I need to be to ensure Elizabeth is receiving what she requires in terms of therapy and medical care. What is worse is I am 'that Mom' to my colleagues as well, as they are Elizabeth's therapists. I love all Elizabeth's therapists they are all great to Elizabeth but in order to ensure she receives therapy I have to call managers, leave firm voice mails and be the mom that everyone avoids. What upsets me is after I resort to these methods appointments magically appear and we are scheduled again. There is no seamless care and in our declining economic state services will continue to dwindle. Invisible borders constantly come up impeding what she needs. Our arguments have only just began with the school board regarding her 2011 start date for kindergarten and us wanting to hold her back. I hate that they already know us and we are not there yet. I do apologize to her therapists, Dr.'s, teachers and now the principle of her new school that we are causing them extra work but really this should be seamless it is 2009. It makes me tired and deprives me of sleep, a lot of sleep.