This was Kay’s observation today, as I decompressed from my day of strategies related to our court case. And she’s right. From her idealistic 16 years, she is appalled and can’t understand why someone won’t do something to make this “right”.

“Why won’t someone help us, Mom? Why are they so determined to make things so hard…can’t they see how much help LuLu needs?” she asked.

“What about LuLu’s former teacher?” she bemoaned. “Out of everyone, she knows our family well, she knows how LuLu struggles and what her needs are. Why didn’t she come to her defense more?”

I try to explain to her how newly launched careers often don’t withstand moral crusades and that this young woman probably wanted to keep her job. But from idealistic 16, it seems wrong…just plain wrong.

It’s harder to explain why the judge decided to find certain points in our favor, but then conclude that those points weren’t significant enough to win our case (they were). It’s harder to explain why a school psychologist spent two months testing my daughter, the results of each test putting her on the autistic spectrum, only for the IEP team to disagree and refuse to find her autism eligible. It’s harder to explain why witnesses lied during testimonies or even admitted to leaving out information on documents, and no one did a thing. My 16-year-old cannot grasp that a group of adults who are supposed to be educators…teachers…people in a profession she’s respected and loved for many school years now…were capable of such actions.

And I can’t explain it to her. I rattle on about careers, pensions, retirement, power, control and trying to protect their bureaucracy. But this means nothing in her eyes when she sees her mom “getting the life sucked out” of her.

She sees the pain and devastation these people’s actions are causing. She knows, at her tender age, that we had no choice but to walk away with no educational services at all (because we couldn’t let LuLu be abused) or turn and fight. But, like Super Dad (and me, too), she’s tired of the fight and heart-broken at the lack of integrity.

And she’s right; it sucks! But whether it’s sucking the life out of me is debatable. It is sucking up a great deal of my time. And to add insult to injury, I also get to be solely responsible for LuLu’s education, since I won’t accept their placement offer in kiddie prison. So in addition to dealing with the quagmire, I get to be a full-time teacher as well.

“That which doesn’t kill you makes you stronger.” This is the obvious motto for every parent of a special needs child I know. Actually much of this journey does kill you…parents of disabled children are at a much higher risk for several major diseases, due to the stress. So maybe Kay is right and it is sucking the life out of me.

I however, prefer to dwell on the other motto I associate with special needs parents. The one that reminds me that life will never be the same and that I will use these experiences for something good.

“I know too much to go back now.”

The Good, The Bad and the Ugly

Advocating in the Midst of it All

Santa Claus Has a Court Decision