A Two Hankie Post

Rachel is my youngest child and this journey through her life has been one of the most difficult I've taken.  Rachel is profoundly autistic impaired and requires help in ALL areas of her life.  Through the early years, I spent much money (buckets full), time and energy seeking answers and solutions.  One day, about 8 years ago or so, her psychiatrist said something to me about raising such a child that opened my heart.  He told me that I worried too much about things that shouldn't cause such worry and grief.  He told me that she is happy.  She is.  He told me she is well cared for and safe.  She is.  He told me she has no worries.  I agree with that.  He asked me why I couldn't seem to accept her as she was.  You could have knocked me over with a feather.  He was right again- I hadn't realized I didn't accept HER.  I was so fiercely "fighting" everything: the schools, the therapists, the doctors with their labels and Autism itself that I couldn't see that I could not accept what I had.   It was at this point that I stopped grieving for the child I would never have and learned to embrace the one I did.  Having an abundance of patience and a good sense of humor truly helps to do this kind of thing for 18 years.

I have learned so many things in the past 18 years that I never expected I'd know.  I know ALL about Autism Spectrum Disorder.  I know ALL about special education.  I know ALL about behavioral, speech and occupational therapy.   I know how to get the services she needs from the community I live in.  I've learned I have many, many strengths within me and strengths within my family that I didn't know existed prior to Rachel.  I know my weaknesses too.  I know who I can count on to help me through a bad spot and I know who not to bother calling.  I know everything can change in a heartbeat and alter the course of your life.  And I know I love Rachel deeply and completely and no differently than my other children.

This entire past year has included a series of monthly meetings leading up to Rachel's 18th birthday and changes necessary to transition to adult community services. I was blindsided by my feelings and have cried many times as she once again is missing milestones that my other kids used to mark their passage into adulthood.  I find myself grieving for missed proms and homecomings, senior pictures, class trips and graduation party planning.  She will not be doing these things and it is me who hurts-not her.  She is happy and has no clue she is "missing out" on anything.  It's just life as usual for her: give her a long hot shower in the morning, unlimited access to food, a dolly, a disney movie and a good book and she is a happy camper.  

This week is filled with yet more plans for Rachel as I now must go to court to become her legal and medical guardian.  I am filled with bewilderment at the silliness of it all and I'm trying really hard to stop "fighting" and just go with the flow: well duh, who do you think would be her guardian?  Sometimes the bureaucrats make me nuts.  C'est la vie.

Tomorrow will be a day of celebration at school and at home.  I am pinching myself because I can't believe it has been 18 years.  It didn't seem so while I've lived it but time flew.

Happy birthday Rachel.