We're Trainable, and It Can Work Out

Over a year ago, my Aspie graduated from high school.  We'd looked forward to this for a long time - with fear, excitement, hopes and anxieties just like any family. I recall the day her umbilical stump fell off - as I stood crying at the loss of that final thing that connected her to me, my husband told me that I had better get used to letting go. I think his exact words were "If we do our job correctly, she will depend less on us every day." Not what I wanted to hear less than two weeks postpartum, but something that became a mantra over eighteen years.

One thing that made the milestone so special for us, though, is that while parents of neurotypical kids assume that graduation and independence will happen, we were availed of that assumption about ten years ago. When our daughter was diagnosed with Asperger's, she was a tiny withdrawn elementary student who shrieked, hid under desks, bit herself, and pulled her hair. She could not make it through a school day without some sort of meltdown. The professionals who diagnosed her tried to adjust our expectations - she may never have friends, she might not be able to complete a "typical" school curriculum, she may never move away from home. Thankfully we had a healthy skepticism (and a potentially neurotic sense of denial) because we just couldn't see that future for our daughter. She was smart, she was imaginative, she was our perfect little girl - and we would do whatever it took to make things work.

Somehow, we found people who also saw that in her and helped us. We have an incredibly supportive family who are no strangers to the autism spectrum and we got empathy and support from them. We had the resources to assemble a team of disparate folks who showed us a way forward. We had health insurance that paid for private speech, occupational and psychotherapy. We had jobs that provided the financial means to pay for co-pays, advocates and life coaches (plus the flexibility to shuffle hours to accommodate for those appointments). We had a school system that provided the supports our daughter needed, that took a chance on her, and that connected us with some of the most dedicated professionals I've ever met. It takes a web of support to raise a child with special needs, and we had an incredibly strong web.

As we pulled those strands apart to build a new web on Maryland's eastern shore where our daughter goes to college, I am in awe of the difference they've made, the humility with which they receive our thanks, and the commitment reflected in the time they have spent with us. Many tears were shed last summer as the goodbyes were said to that network - the tears themselves demonstrated the strength of those bonds.

So what am I thankful for? How have things worked out?  Well, to name a few:

• My daughter wore three honor cords at graduation - International Thespian Society, National Honor Society, and AP Honors (she took 7 classes and scored four 5s, two 4s and a 3 on her tests). Not only did she earn a diploma, she nailed that high school diploma!
• She actually survived the commencement ceremony (and the tunnel of horror that she waited in before processing). She used all sorts of strategies learned along the way to do something for my husband and I and herself - to deal with noise and crowds and silly ceremony so that we could celebrate her. Her art teacher told an amazing story of her determination, as she pushed through the sensory nightmare to make it to that commencement floor.
• We had an amazing post-commencement gathering full of the people who have loved and supported our daughter along the way. And she enjoyed it, socialized, and shined. I cannot think of a prouder moment than seeing her make the rounds of the over 60 people in attendance, receiving congratulations from friends, teachers and family (many of whom I met for the first time that day).
• She has an amazing group of friends who appreciate her for who she is. The high school theatre family just rocks (and, she would say, they are her second family). When she was cast her in her first role in ninth grade, a connection was borne and a transformation was continued. She has been changed for good, to quote a favorite musical number...
• We have a great family who supported us, cheering our daughter on, providing emotional support even sometimes (often) taxi services.
• My husband and I survived as a couple. There is a reason that the divorce rate is higher among special needs families - it's hard to agree on the zillions of decisions necessary (particularly when you are tired and thankful just to have survived a day). I've had the best partner ever and I'm so thankful we made it through the rough patches.  We will celebrate our 20th anniversary in two weeks.
• I have two fantastic kids. One is the subject of this post - she has an inner strength and determination that astounds me. The other is one of the most caring and understanding young men I've ever known - her brother. He has borne with us as we schlepped to one place or another, has laughed off my neurosis when I turned my worry to him, and has become an advocate for kids like (and including) his sister. Plus, he makes her grilled cheese sandwiches.

My daughter has moved on  to the next stage.  She completed her freshman year at Washington College in Chestertown, Maryland.  She lived on campus, she joined clubs, and she had a typical freshman year (with a few crises added in for good measure). She's got a group of people who support her there - the counseling center personnel, the disability services coordinator, the health center folks, friends she's made, plus my friends in institutional research.

This blog will be a collaborative effort - both my daughter and I will contribute posts.  Our goal is twofold: 1) to share tips and tricks we've learned along the way; and 2) to provide a more hopeful outlook for parents (and kids) than we initially received.

My daughter continues her path toward independence, so we'll likely document that along the way.  But she's accomplished some tough stuff getting to this point, and she has the skills and resources she needs, thanks to the teachers, speech therapists, occupational therapists, psychologists, mentors, etc. along the way. And for them I will be eternally thankful.