A little anger to get you going...

When we moved to Sacramento County from Marin County, Hailey had to be "reevaluated" for all of her services.  Most of them went smoothly...One did not.  After the social worker did her reevaluation and presented her report, Hailey's services were cut almost in half...This is after a one hour assessment by someone we have never met before...a stranger.  I am still not sure how she evaluated her at all since Hailey sat on my lap through the entire meeting...

During the initial phone call to the social worker I was asking all of the right questions in order to see how she came to her conclusions in the report...One was that Hailey had independent and safe movement...I asked the social worker if she met my child, if she maybe had Hailey mixed up with one of her other cases.  You see, Hailey can walk and she can run and she is fast.  She can go up and down the stairs holding the rail...but she is DANGEROUS to herself.  She has no idea that she could fall and if someone is not next to her, she would trip and fall hundreds of times a day. 

So the social worker says to me...WAIT FOR IT..."look my friend, would you rather that she was immobile, in a wheelchair or bed because that is how some of my cases are"  And I was enraged... I think I actually lost my mind at that moment because that is the most unprofessional question that I have ever been asked by all of the hundreds of therapist, social and case workers I have met over the last 9 years.  All I could think is, you don't know me or how my life is or what I wish for or what I do every day to keep all of the balls in the air.  Don't ask me what I wish for or what I would rather because first it is none of your business and second it doesn't really matter what I would rather because this is what IS...

In retrospect, I think that I was so angry for a variety of reasons...

One I hate focusing on all of the negative aspects of Hailey's disorder.  I choose to see her beautiful smile and hear her infectious laugh.  I choose to marvel in how she walks at all, how she writes her own H, how she uses the potty most of the time, how independent she is becoming in her own little world...I try hard every day not to see that she is 9 and can't write her whole name, how she can only really approximate about 6 words, how she falls all the time if someone is not right next to her, how she still wears a diaper at night.  During these reevaluations and assesments and IEP meetings and IPP meetings, the focus is on what she CAN'T do not what she CAN do. So after going through about 6 of the meetings right after losing my home and business and relocating 100 miles away...I had reached my limit for tolerating other people's ignorance, questions, judgement.

Two I hate when people ask me ridiculous questions.  They infuriate me.  Sometimes do I wish she was in a wheelchair and immobile?...another loaded questions but...yes, sometimes...That way I wouldn't have to worry about her falling and hitting her head and going to the hospital for stitches if I let her out of my sight or even further than arms length away...I wouldn't have to worry about her chasing her sister and attacking her and hitting her and pulling her hair...Does that make me a terrible person, mother...maybe but I think that most of the time it just makes me human...I don't really wish she was in a wheelchair, only in little blinks...In the backs of our minds, I think we have all kinds of little blinking thoughts that aren't truly wishes but rather contemplations. 

So I wrote a complaint letter about the behavior and unprofessional comments from the social worker and I filed a fair hearing and we won.  I am not sure if I needed to be so upset and enraged to win...and I'll never know.  What I do know is that one comment from a horrible social worker gave me enough energy and enough drive to research every day, consult attorney after attorney, file a fair hearing, prove that my daughter required 24 hour supervision...and win...until the next reevaluation or assessment or IEP or IPP....and the next time my daughter needs someone to advocate for her...