So a few weeks ago I came up with a fairly brilliant idea, I thought at the time, for an entry to the blog. I would poll the special needs community for tips on surviving whatever holidays they celebrate. Then I would sit back and reap everyone’s abundant knowledge for both the good of the blog, and for my own selfish purposes, because our holidays are sometimes sheer hell. Here was my cheerful request: “I am gathering info for a special needs blog article I am writing. Any info/suggestions on what you do to survive or *GASP!!!* ENJOY, family/holiday get-togethers would be appreciated, even a sentence or two. Would like perspective from a variety of traditions, Christian, Muslim, Jewish, anything. How does your church/mosque/synagogue help you out? What could they do better? Ditto your family and friends. Tia.”
I eased back with my Chai and prepared to have all my holiday woes and fears washed away by the flood of responses I was bound to get. After 15 years in the autism life I am apparently somehow still pursuing that silver bullet. After several days of deafening silence I received the following sole response:
“Cindy Szymonik, I hope you will forgive me when I say that right now, I am getting a sort of sick laugh out of the fact that none of us had any suggestions on surviving the holidays. I just got a text from a family member who “hopes (our son) will understand!” as the whole plan for him on Thanksgiving has been turned upside down. ????
Last year (my son) and I skipped the family gathering and I drank wine at home. I’m starting to think it was my best Thanksgiving plan ever.” -(anonymous mother of a son with autism).
A few more responses trickled in: “Some Muslim communities and mosques are just now, like within the past year, starting to offer accommodations and support for things like our Eid prayers. I heard about in Chicago how for the first time MUHSEN (Muslims Understand and Helping Special Needs Education) helped organize a prayer service on one of the Eid holidays for families with special needs loved ones to attend with anyone else who wanted to come. As for me, we’ve figured out as a family what works or doesn’t work for us. Certain homes work. Others don’t. Sometimes it’s better for me and (my son) to stay at home, like (the previous mom) says, and the rest of the fam to attend a holiday function, like an iftaar party (fast-breaking party) in Ramadan. Sometimes my husband and I tag team – he goes to the party first and then me. Sometimes we hire caregivers to stay with (my son) and we attend a holiday function with our other kids. We’ve learned over the years that trying to make a big to-do, trying to force (our son) to be a part of these parties or functions is more stress than it’s worth.” – Dilshad Ali, mother of a son with autism.
I also received this response:
“We are hosting the entire family at our house… This is easier for (our daughter), she can just go to her room and close the door. She is in her comfort zone at home. Everyone brings a dish. Cross your fingers…” – anonymous mother of a daughter with autism.
And more words of wisdom from another autism mom:
“Holiday survival techniques of (our family): small groups; keep things casual; keep things short; low expectations; drinking; hiding/escape plan ( for (my son) and also for me); hiding plus drinking; choosing carefully who you spend the holiday with (sometimes this is the “family” we have created rather than blood); lots of breaks; outside time if it isn’t gross out”.
And the piece de resistance: “Diddly Squat” – anonymous mother of a son with autism.
So what I glean from all this is that it’s probably going to be a challenge regardless of what anyone does, because it is a change from our usual routines. I should mention that the relatively small pool of responses could also be attributed to the fact that I foolishly asked this question at the busiest time of the year. I know alot of us have family members and community who do try to help us, but it’s an uphill battle. Perhaps next holiday we should all quietly stay home and order takeout? Nah.
Cindy Szymonik is the mom of two really great sons. A teen with VERY high functioning Asperger’s Syndrome, and an almost-teen with rather profound Autism.When Cindy has some free time she likes to do volunteer work: sewing for Days for Girls International, and assisting at Historic Richmond and Full Circle Grief Center. She is an avid cat lover and enjoys pet sitting with her son Cole.