Four years ago, just before Christmas, we received the preliminary results of our son’s evaluation for ASD through our local school district. While I went in with plenty of knowledge and even suggested to the evaluation team that I suspected Asperger’s Syndrome, somehow it didn’t make it hurt less to see the results on paper. I remember reading the 20+ page document while extended family members visited and laughed with my husband in the next room. Ethan was tucked safe and sound in his warm bed for the night, but I was flooded with emotion. I’ll never forget that night. And while I love Christmas and all the blessings it brings, I will admit that this time of year tends to leave me feeling a bit overwhelmed. Truly a bitter-sweet time of year for me.
I’m thrilled when I stop to consider the progress Ethan has made in the past four years, but I still experience a bit of sadness, worry and doubt every year around our diagnosis anniversary. My sadness has evolved over the years. It began as a personal grief, for the loss I was personally feeling. These days, my sadness is more focused in on what I feel Ethan is missing or has lost. My worry covers everything from financial concerns of how to pay for therapies and treatments to worrying over whether or not we’re doing the “right” therapies and activities which will benefit Ethan most. The doubt I feel plays right into that…are we doing enough? Are we missing something? Have we cut any therapies or interventions too short? I consistently question all that we choose to do for the simple fact that I want to make sure that we are doing everything possible to support Ethan’s progress, health and happiness.
This isn’t something I’ve really discussed with other families living with ASD, so I don’t really know; does anyone else relive these emotions annually – around the time of year your child was diagnosed with an Autism Spectrum Disorder? I know to a certain extent, I tend to cycle through these emotions on a regular basis, but there is no doubt I feel them more intensely this time of year. Just as I feel great sadness on the anniversaries of my grandparents’ deaths, I experience more acute sadness, worry and doubt as Christmastime - and our diagnosis aniversary - arrives and disappears into another year.
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Leigh Attaway Wilcox is a writer and editor for the projectLD family of companies. Leigh is Assistant Editor of the internationally acclaimed AutismSpot.com and her work can be found on many of the pLDNetworks sites. Leigh is a guest blogger for the Dallas Morning News on the Dallas Moms Blog and is the author of ALL BETTER: A Touch-and-Heal Book published by Piggy Toes Press in 2007. 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.
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Thank You!
Leigh, I want to thank you for posting this. As a parent of a child who has been diagnosed with verbal apraxia, I always wonder if there is more we could have done, or should have done, to improve our son's speech. Thankfully, he has made lots of gains over the past year, so I find myself not second-guessing our decisions quite as often as we used to.
In regards to therapies, our son receives free speech services through early intervention 2x per week, but just last fall we were paying for additional therapies through a private practice. As tough as it was at the time, we paid thousands of dollars out of pocket for additional therapy for our son, thinking that the more the better. About 3 months into private therapy, the speech therapist brought my wife to tears saying that the prognosis for our son was bleak, and that unless we brought him in 5 times per week (instead of 2 times per week), he wouldn't make much progress. Financially, at that time, this was not a possibility. Shortly after this incident, we took our son out of private therapy and just stuck with the free therapy through early intervention. We also put him in preschool, which provided him with lots of good peer speech models. I can honestly say that this was the best decision we made for our son, though we didn't know, at that time, if we were doing the right thing. We learned that more (therapy) is not always better (though I know in some cases it is), and that what he really needed was to be around typically developing peers. Having this exposure to typically developing peers has been the very best therapy my son has had to date. This just goes to show that, yes, therapists may specialize in their respective fields of study, but parents are the experts on their children. In the end, we knew best.
Thank you again, Leigh, for this wonderful post. It's so nice to know my wife and I aren't alone in these thoughts.
Keep'em coming! I always learn something new from you.
Regards,
-Craig
Thank YOU, Craig!
Wow! I couldn't agree more - parents are the premier "experts" on their own children. My mom, who is in Special Education and Administration in New Mexico schools, has always said it...she still tells her students' parents and their teachers the same things. We really do need to trust our insticts and do what we feel is best for our kiddos!
Thanks so much for sharing your experience here. Sometimes second-guessing an "expert" is uncomfortable, especially when they are teachers or therapists involved in a child's school, but it is very important that we do all we can to make sure our kids are getting exactly what they need!
All Best,
~Leigh Attaway Wilcox