Hi All:
It seems that every few months I need to check in for a pep talk from other parents who can understand what we're going through. In the past week or so we filed a complaint with the Dept of Education, met with the superintendent and had DD's psychologist do a classroom observation. Within 48 hours of the observation the district started to provide some of the things we have been making a fuss about for the past 3-4 months. We don't know what finally caused them to respond - probably a combination of the 3 things. Yesterday our consultant, who we really felt had unfortunately come to the end of his usefulness for our situation, called to say that he is suddenly reenergized and believes that he is ready to lead us to whatever our final conclusion will be. We have a meeting next week about finally adding in assistive technology and if the district can't provide a more appropriate classroom for next year we have a plan to move forward seeking OOD placement.
All of this is a remarkable amount of progress that all seems to be coming together at the same time. Unfortunately in order to get to this point it has been months of stress and constant advocacy. I have come to realize just how much of a toll this has taken on me. Psychologically, emotionally, intellectually - even physically. And the worst part is when you feel like you can't go on any longer you don't have the option of stopping. It seems that any time you decide to give yourself a bit of a break there is a sudden crisis that needs immediate attention. It's all so exhausting - and yet you have to keep going. There is no choice.
Tonight I had an experience that showed me just how much DD's life has changed in the last few years. Where she was once the little superstar - blowing everyone away with her personality and abilities at the age of 3 or 4 - she is now the physically awkward, sensitive 8 year old that needs very special TLC. I saw clearly that her confidence in herself has been shaken, and it deserves to have been. She is still willing to take risks but is no longer the resilient little "Tigger" who bounced right back up if something went wrong.
So I need a pep talk. I foolishly read more about NLD (she is diagnosed as "NLD-ish" so not all applies to her - at least that is what we hope) last night and it is just SO depressing. If the diagnosis is accurate all of these challenges will become more pronounced as she gets older. The discrepancy between her highs and lows will become more pronounced. Her disabilities will be increasingly more noticeable at school. I am afraid my cheerful, confident little girl will be gone if I can't get her what she needs. Unfortunately no one seems to be clear on just what those needs really are and I am running out of ways to make it happen for her.
Any BTDT experiences to share?
