Hi Pemberley,

Originally Posted by Pemberley
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.

Well, that's good. You are getting results; I'm sorry that the process takes so much, but you are DOING IT.

Originally Posted by Pemberley
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.

I'm glad you are on top of this; it seems like a reasonable strategy, executed at a reasonable pace. And I'm glad the advocate is back in the game to support you.

Originally Posted by Pemberley
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.

I hear you. And yet I can report that over years of this aggravation, one does develop a sense of pride in the work: I know that my kid would have gotten a poor education (or none) were it not for my efforts, and yet here he is getting a really very good education, and being successful, and being recognized for his achievements. The work of it was his, but it was also mine, and I'm proud of us.

(Of course, I am also tired of dealing with it all, but I have developed enough expertise and enough of a support team that an IEP meeting does not keep me up nights any more. It's infinitely better for me now than it was five years ago.)

Originally Posted by Pemberley
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.

But she will also grow and change. She will not always be this fragile. She will grow into understanding what her personal work-arounds are for her disabilities, and understanding what she can do.

Pemb, I met a person who now works as a consultant primarily for people with ADHD and other executive function issues. The consultant has several learning disabilities herself, I believe including dyslexia. She has a personal assistant to help her manage her business effectively; her computer use is exclusively through Dragon Dictate and her assistant. What impressed me is that she is a confident, highly successful and respected professional. It was so satisfying to see.

Schools are more cookie-cutter than the world is; I think your DD will find that the world welcomes her skills even if school is difficult. Early elementary is hard; you've started from scratch figuring out the disabilities. You will continue to teach and find work-arounds that make things better over time and she will learn to manage more and more for herself.

Originally Posted by Pemberley
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.

Those descriptions might be of a typical course for a typical NLD child. But they probably DON'T describe very well a child as intelligent as yours, with a parent as dedicated as you providing a first-class education. Therapies work. Teaching works. Children learn and grow. Disability is a pain in the neck, but it is possible to become less disabled by one's disability over time through the development of good strategies for problem-solving and coping.

Originally Posted by Pemberley
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.

Is that because the NLD question is still unsettled? It did seem to me that you understood, at least, what she would need for starters to be successful in school. Are you finding that the accommodations aren't enough (when the school actually does them)? Or is this more the existential feeling that there is a bottomless pit of needs that you will never plumb the depths of?

I guess what I can really say is that yes, it's tough, and it gets better. You won't believe the person you'll be a few years from now; many things will be different, and you will have improved your DD's life by your efforts.

I have a day job, but this tough advocacy job is my most meaningful work.

That's what I've got. I hope it helps.
DeeDee