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.
2 comments:
That was a lovely post. It's so hard, isn't it, this mothering business? The urge to step in at all times and make everything right can be overwhelming, even when, as you point out, our kids have no idea that everything isn't already right.I wish I knew a lot of this stuff before I had kids.
Happy Birthday, Rachel. It sounds like your mom has definitely got your back.
Sniff. Thank you. As the Bob Seger song goes: "wish I didn't know now what I didn't know then.
Post a Comment