Autism and the Holidays…

Guest Blog By Holly Bortfeld

I am a single parent of two teenagers with ASD.  I live 3000 miles from everyone I grew up with, and my family.  My ex lives 1000 miles away and has no contact with our children.  I live hours away from friends.  I live here because autism services are tremendous, but I don’t know people here.  There are a ton of “how to survive the holidays with family” articles, but this is not one of them.  This is a story of adaptation and making peace.

Autism is isolating by its very nature.  Autism isolates children from their families, their siblings, their peers and their world.  Autism isolates siblings from friends, communities.  Autism isolates parents from their children, their work, their friends and their money.  Autism isolates.  Perhaps at no other time in the year is it felt as severely as during the holidays.  Nostalgia is brutal.

Now, let’s look at it another way.  Imagine a low-stress holiday.  Imagine peace and quiet, without all the commercial hustle and bustle.  Imagine a place where autism is small and peace is big. Imagine not going insane (and taking everyone else with you) to make sure all 23 dishes are ready and on the table at the same time.  Imagine not listening to your family fighting, or having to hide everything breakable from your child – or hide your child from family members, no matter how well-meaning.  Imagine not having to run after your child the entire time making sure they don’t elope or eat non-safe foods/plants/stuff.  Imagine no shitty parenting advice (because if you would just spank him, that autism would go away).  Sigh.

Do you remember when you got, or gave, a gift that came in a huge box, and the box itself became the best toy of the day providing hours of play?!  That’s what this is like.  It’s pretty awesome.

I recently talked to a mom of a child with autism that was heartbroken and ashamed that autism has taken precedence over the family’s long-standing holiday routine.  For several years, they tried valiantly to incorporate autism into the status quo traditional holiday plans but autism kicked its butt, and theirs.  They took it as a defeat.  I am here to tell you otherwise.  I am here to tell you that status quo isn’t mandatory, isn’t the best, isn’t for everyone.

Do we lock ourselves up?  Hell no!  We just have a new reality.  A quiet, thoughtful holiday.  A menu filled with delicious allergen-free foods, so they can be left out without worry of happy, hungry fingers, that is ready whenever the heck it’s ready.  We might have the turkey for lunch, maybe dinner, maybe in between, maybe at 9pm.  Who cares?  Can you feel the stress leaving already?  How would you like to  get enough quiet time to actually be thankful on Thanksgiving, jolly at Christmas, have reflective dignity at Kwanzaa or grateful dedication at Hanukkah?  What a concept.

Consider for a minute – no one to judge you for spilling wine down your shirt, for burning the cranberries or even that you’re still in your pajamas at 6pm (or that your pants were inside-out all day).  No one to constantly shush your kid with autism, just let him be.  Shouldn’t he get to enjoy a day off too?  It’s time to come to grips with your life and ENJOY it.  No matter what.  Revel in it.  It’s all you have, after all.

We do have tremendous, supportive friends all over the world, thankfully.  And every holiday, we get to “have” dinner with them – via Skype.   We can put the laptop on the dinner table and actually have dinner with our friends, even overseas!  We never miss birthdays either, thanks to “phone shots”, which was born out of necessity from missing too many celebrations because we were thousands of miles apart.  Necessity is the mother of all invention, right?

Before you let the status quo make you feel bad, alone, defeated, rethink holidays.  Rethink peace, togetherness, tranquility.   Adapt and thrive.  And enjoy your holiday, no matter how you celebrate.

27 Comments Add yours

  1. Lisa @TACA says:

    Thanks Holly for such an insightful and loving post. You are fantastic!

  2. autismtymz2 says:

    Kudos for following your child 🙂

  3. SherriPizza says:

    I too am a single mother, and I have a 5 year old son who has autism. I have a tiny family. My ex-husbands lives very far away and visits on rare occasions, for one-day visits 3 or 4 times a year. I too have had to rethink holidays, and every other aspect of life, for that matter. But I don’t think I have adapted quite as well as you to the loneliness and isolation, in that they still makes me very sad. This is a wonderful post, I found it very inspiring. May I ask where you live (which state or area) that has tremendous services for autism?

  4. Janice Kern says:

    This will help many families but it has already helped me personally with my outlook on the season. Thank you so much!

  5. Sue says:

    We shared our turkey and gluten-free stuffing with a couple of close friends at home. Kids got to help cook and everyone got to relax and enjoy the down time. Sometimes the traditions you create turn out to be the best ones!

  6. Jo Ashline says:

    This post speaks volumes about acceptance, and living life on life’s terms, whatever that may mean for us as individuals and families with autism. Great piece and some great advice!

  7. nhokkanen says:

    What a warmly optimistic article! Thanks for this early holiday gift.

  8. Ali Hoffman says:

    Love this post, Holly. Thank you so much for sharing!

  9. jane says:

    I am with you sister! I wrote a very similar article about 4 yrs ago..keep writing!

  10. Cari says:

    Thanks so much for your writing, acceptance and learning to let go of the constraints of what is ‘expected’ is my new goal and it is great to see my son benefiting from it!

  11. Kelly Vanicek says:

    ‘Adapt and thrive’ – beautiful and brilliant. Thanks Holly. All the best this holiday season to you and your very lucky children.

  12. Jamie says:

    Again you put into words that so many need to read. Thank you Holly.

  13. JSias says:

    This is one of the best blogs I have ever read, because I live this! Who ever you are, “God Bless You!” I am going to share this with my world, hoping others will learn things that are sometimes so difficult for us to express! You did it so beautifully! Thanks a ~Million 🙂

  14. Jennifer says:

    Wonderful insights, Holly!!

  15. Kimberly says:

    I know how you feel I am a Mom of 3, 2 are autistic

  16. Joyce Davila says:

    Hi, where do you live that provides great autism services?

  17. amy says:

    This is why you are so amazing Holly! Exactly my thoughts each and every year! I love that my son gets the day off too and that we just get to relax as a family and enjoy the “nothingness” of sitting, eating, and unlimited free time 🙂 No more “torture” of having to open presents since he could care less.

    You inspire so many! xoxo

  18. Marlene Juarez says:

    Thanks for this! I love it. We still also have two sons with autism. And we try our hardest to make Autism work with our Holiday plans. I have learned to not be dissappointed when they won’t open their gifts with all the other children. Our relatives still dont’ quite understand, but that’s ok!

  19. Lisa A Walczewski Souza says:

    Holly,
    So true. I think as parents, the feelings ebb and flow, but at the end of the day we all want to do what’s best for our children, and the least amount of hassle for the whole family. I’m a single mom with three children, have raised them for 15 years on my own, and my youngest is Autistic, but not diagnosed until age 10. My middle daughter is ADHD, so holidays, we learned as a team-the kids and I-to manage on our own, however it turned out. When the kids were all smaller it was harder, wanting to live up to the day and all it inspires. Then as we learn, fighting Autism just isn’t worth it, and I wouldn’t want to change my son at all! Great article!
    Happy Holidays.
    Lisa

  20. Katherine Alvarez says:

    Holly, I’ve said it before and I’ll say it again. TACA is so lucky to have you. I feel honored to have met you 2 years ago. I definitely want to be like you. You put my thoughts into words. Things that I just don’t write or say out aloud for fear that I wouldn’t stop feeling the pain. I only allow small moments of to let out just a little at a time. Again, thak you doe writing this. Thank you for all you do for so many everyday. This time of year is especially hard and I needed to hear this
    and be reminded of all the positives. God bless you and your beautiful kids.

  21. Tisha M. says:

    You rock Holly……in my next life I want to come back as you!! 🙂 You inspire so many — thank you for giving such great advice/info.

    Loved the article — I am one of those that have spent the last few years trying to figure out how to get my son to fit in with the family’s holiday traditions but after reading this I am definitely going to reevaluate. Traditions are nice but there is something freeing to start your own even if it doesn’t necessarily fit within the status quo!! 🙂

    Happy Holidays to you and yours!!
    TACA Rocks!!

  22. laura says:

    Hi how are you where you live at the has tremendous autism services.

    1. Holly B says:

      Hi Laura, I live in PA. 😉

    2. Holly B says:

      Hi Laura, I live in Pennsylvania now. 🙂

  23. sheaam says:

    I LOVE how you have embraced our reality, and have portrayed it so wonderfully!! You are an amazing mother, kuddos to you Holly!!!

  24. Erin says:

    “Rethink Peace” — my new mantra. Peace to you and yours, and wishing you all the blessings of the season.
    Erin

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