Last year I wrote about what I refer to as our diagnosis anniversary and all of the emotions it brings with it each year for me…right around Christmastime. This year, marks 5 years since our lives changed drastically - when we entered the community caring for and serving children and individuals with ASD; our 5-year diagnosis anniversary.
Ethan doesn’t really know I have these bitter-sweet moments every December and I plan to keep it that way, at least for now…He LOVES the joys Christmas brings and I adore watching the joy unfold around him. Spending time with our extended family makes him happy from the tips of his toes to the ends of the hairs on his head. He now shops for our family members – spending his own money – and helps wrap each gift. Ethan helped prepare gifts for the teachers and administrators he adores at his school. He understands why our family celebrates with gift giving and loves to hear the story of the Three Wise Men bringing gifts from afar to the Baby Jesus. Someday maybe I’ll share with him about my conflicting emotions at this time of year, but only when he’s an adult, and only if he is able to comprehend and filter such information to benefit his life and outlook; otherwise – I’ll keep it to myself.
In the last year, I have continued to witness tremendous growth in Ethan’s life that makes my heart sing. He is showing signs of his first crush on a beautiful girl in his third grade class. ♥ He has been taking piano lessons since last January, continuing to confirm indications that he may be musically gifted; he performed in his first Christmas piano recital earlier this month. In fact, our family Christmas cards have one of my favorite photos from the recital of Ethan immersed in the music piece he chose to perform – “Angels We Have Heard on High.” Ethan continues to amaze me with how he is able to convey his [often quite deep] thoughts, concerns, worries and inventive, creative, out-of-the-box ideas for the future. He has a bright light that shines from within and I am beyond thankful that he is able and willing to communicate that with me through language and through acts of love.
On the flip side, we’ve encountered some new and unexpected issues this fall that have been really challenging and quite hard to fully understand and address. We’re still working some of these issues out and I’m so very close to them I can’t yet “write” about them without blubbering…so, watch for more on this topic in future posts…when I can write about these issues and concerns with more clarity.
In the past year I’ve continued to read and watch stories of how poorly some individuals with ASD are treated…at school, at work and in the community; countless stories of bullying – from children and even adults in charge of caring for the children…beatings…deaths and so very much more in between that is hard to swallow. My heart continues to break each time I encounter a new story of abuse, neglect or injustice where kids like Ethan or like my friend’s precious children are involved. All I know to do is lift these children and young adults (and their families) in prayer and continue work in my circles, our community and our society to change the world the best I can to better prepare people to accept and genuinely love this amazing population.
I’ve also watched over the past year as several doctors working to heal our kids have been attacked in court and in front of state medical boards. Thinking outside-of-the-box isn’t always easy and it often doesn’t earn people the respect and accolades they deserve. I continue to appreciate the doctors who help us treat Ethan as a whole child – to address his complex issues from the inside out. Some of these doctors see us on a regular basis, others are researchers, authors and presenters that I’ve never met, or only met at conferences. These docs continue to have my gratitude for stepping up to work with this population in desperate need of bright, brave experts who will think and act outside-of-the-box, even in the face of adversity.
Over the past 12 months I’ve met more and more new families affected by autism or other developmental delays. I’ve met lots of new families with tiny tots. My life continues to be enriched by these new families and the families who’ve been doing this for longer…this community has become a new “home” for me. Brings a new meaning to “Home for the Holidays” doesn’t it?
In this season, on our five year diagnosis anniversary, I wish each of you and your loved ones the very best right in the here-and-now and in the coming New Year. Please drop me a note here or on Facebook or Twitter…let me know how your year has gone.
Leigh Attaway Wilcox is Editor in Charge of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007 (now available for digital download via Moving Picture Books). Leigh lives in North Texas with her husband and young son who loves reading, LEGOs, Mario Bros. and also happens to live with Asperger's Syndrome, an Autism Spectrum Disorder.