We've looked forward to this for a long time - with fear, excitement, hopes and anxieties just like any family. I recall the day Alexa's umbilical stump fell off - as I stood crying at the loss of that final thing that connected her to me, John 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 has become a mantra over the last eighteen years.
One thing that made this 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 almost ten years ago. When Alexa was diagnosed with Asperger's, she was a tiny withdrawn elementary student who shrieked, hid under desks, bit herself, and pulled her hair.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 what it takes to make things work.
Here comes the thankful part - 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 understanding 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 Alexa 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 now pull those strands apart to build a new web on Maryland's eastern shore, 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 have been shed over the past few months as the goodbyes have begun - the tears themselves demonstrate the strength of those bonds.
So what am I thankful for? Well, to name a few:
- Alexa 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!
- Alexa 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 John 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 Alexa's 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 Alexa along the way. And Alexa 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).
- Alexa has an amazing group of friends who appreciate her for who she is. The PPTC 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 Alexa on, providing emotional support even sometimes (often) taxi services.
- John 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.
- 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 - Ben. 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.
