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.