The Return To ROUTINE – which side are you on?

3 Jan 2012 by Cheryl Chan, 6 Comments »

Perusing my friends’ posts on Facebook and Twitter, I’m struck by the wide variety of emotions evoked by being done with the holidays.  They range from “the kids are back to school!  Hooray!” to “not motivated to take down the decorations, because it means the return of routine.”  Some even go so far as “I didn’t think I’d make it through, I need to sleep for a few days.”  Even though this sounds comical, when it comes from a parent or caregiver of a child with special needs like autism or a mental health disorder, they are probably not joking.

My own son with autism is now 19, and is residentially placed year-round at a school that can handle his behavioral and intellectual challenges.  He comes home for weekends and the holidays.  It’s been a few years now, but the memories of school vacations still bring me chills.  The utter and complete fear that can be evoked by the idea that for up to 2 weeks, I would have to manage my son’s needs devoid of any routine, assistance, ability to access help, and in the midst of everything around me thrown off by the holidays and all that they bring, was paralyzing.  Most of the time the very few sources of help I had were unavailable.  My husband couldn’t take the entire time off from work.  It took weeks of planning, because I had to have a plan for every moment that he was unstructured.  Unstructured equals disaster much of the time for our kids.  One of the only things I could count on was friends who could take my young daughter for playdates, which at least would leave me with just one child to manage, not both.

Oh yeah, and it was Christmas.  There’s that.

So getting back to my Facebook and Twitter friends…like I said, everyone’s a bit different.  I love Christmas and New Year’s Eve.  We had our son home for 2 days, which right now is the best he can manage.  I had my usual rollercoaster ride – Christmas Eve I cried for my son, his suffering and the sadness of it.  That’s the one day a year I allow myself to do that.  Christmas day I was overjoyed as my daughter leaped and screamed with each gift she opened.  I hosted my parents and other family members with joy, and my son was there and behaved beautifully – a true blessing for us.  I played a little hooky from work a couple of days last week and focused entirely on my daughter and husband.

And now it’s back to routine.  I am relieved, frankly.  I don’t consider myself a person who relies on routine, but when it’s gone entirely for more than a few days, I do miss it.  I was up at 6:00 this morning, making breakfast and lunch to pack.  It felt really, really good.  How about you?

PS – that bit about playing hooky from work…don’t tell my boss here at HMEA.  HAPPY NEW YEAR!

photo courtesy of http://www.curbly.com/users/chrisjob/posts/7803-ten-alternative-uses-for-your-christmas-tree

About Cheryl Chan

Cheryl Chan has written 17 articles on this blog.

Cheryl Chan is the Community Manager for HMEA, Inc and the Autism Resource Center of Central MA. More importantly, Mom to Nick, age 17 who has low-functioning Autism; and Isabelle, age 11, who is a budding fashionista. Social Media evangelist, advocate, motorcycle rider who speaks Japanese.

6 Comments

  1. Jennie Ladew-Duncan says:

    Hello Cheryl,
    I used to be so relieved when it was time for Isaac, also on the severe end of the spectrum, to go back to school. At least when the program was decent, but even when t wasn’t, the end of vacation felt like a reprieve. I used to think the teachers bordered on cruel when they’d cheerily say, “Enjoy the vacation,” and I’d be thinking what vacation.

    My son lives in an adult group home now. Unfortunately his father and I are now divorced and living a part and we share visits, with my former husband seeing him more frequently due to close proximity. I miss my son a ton, but I see him at least once a month, and when he comes home here, it’s for two to three days and I spend EVERY holiday with him.

    He likes the holidays a bit better now. He loves coming home. We are better able to put our full focus on him, both now and when he went to a residential program in his teens, and we all benefited. We weren’t so exhausted.

    Jennie

    • Cheryl says:

      Hi Jennie,

      Thanks for the comment – always good to hear from you! You hit on it exactly – when they are not home all the time, it’s extra special to have them at the holidays…for us, at least. Maybe not for them, especially when they are young! But Nicky is definitely better now than when he was little. I think a lot of it has to do with our energy levels, emotional and physical. When you’re exhausted all the time, it’s hard to be joyful or festive. They feel all of it even when they can’t communicate it.

      So glad Isaac enjoys his home visits! You’re a great Mom, he’s a lucky kid!

      (audience, if you haven’t already figured it out ;-) , Jennie and I have known each other for many years. It’s a big community, but we’re pretty tight!)

  2. Cheryl Chan says:

    Jan, that is priceless. It’s amazing how our loved ones often show how much more they understand than we often give them credit for. It’s moments like these that you really cherish and teach us to never give up. Thanks for sharing. Hope you’re feeling better!

  3. Jan Maxwell says:

    My 54 year old autistic cousin and I had a wonderful Christmas experience. He was at his mother’s for the holiday. I was very stressed by another relative, didn’t help that I was recovering from pneumonia.. For the first time in our lives, my autistic cousin came to me, hugged me and looked me square in the eye. It made my Christmas.

  4. Cheryl Chan says:

    Thanks, boss. Couldn’t ask for a better one.

  5. michael moloney says:

    this is your boss :-) I’m never sure when you are working but in a way you are always working with issues related to autism & the autism community rarely taking a holiday. Really glad Nicky and Isabelle had a great Christmas

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