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Special needs holiday challenge: pick one thing… And DO IT

December 4, 2013 by Gillian Marchenko

special needs challenge

 

Special needs holiday challenge: pick one thing… And DO IT

The difficulty of doing

After speaking to a group of moms about bridging the gap between families affected by special needs and others, one mom approaches me.

“Can I talk to you? It is just getting harder to do things outside of the home now that my son is older. He gets over-stimulated in new environments, and it is difficult… For him, for me, for his siblings. A lot of times, honestly, it is just easier for us to stay home,” she tells me with tears in her eyes.

“My other children ask to do things, and I just know we can’t, because of my son.”

The heartbreaking reality

I know exactly what this mom is talking about, and I’m pretty sure the rest of you in our special needs club do too.

Trying new people, places, and things with our children with special needs is a challenge at best. My family can’t get up and go on a Saturday afternoon without figuring in and planning. We must figure in how our seven-year old daughter Evangeline, who has Down syndrome and Autism, will do in that new environment. We have to plan to bring back up clothes, food, and sensory toys for both our girls with Down syndrome.

A lot of times my husband and I opt to split up. One of us will stay home with our two with special needs (or do another activity more up their alley) while the other parent goes with our older girls.

Other times, we just don’t go.

We try to do what we will be OK for the whole family and that leaves us fragmented and frustrated.

And I can’t help but feel that every time we make the choice to stay home, not to do, not to try, that our world closes in on us ever so slightly.

Anyone else feeling claustrophobic?

That’s not what I want for my family.

Even though it takes forethought and planning, I want to go. I want to do. I want to try.

I want my girls with Down syndrome to experience the world, not just our living room.

I want my older girls to do and go, especially now that they are old enough to feel and understand some of the strain that special needs places on our lives.

I want my husband and I to enjoy that moment when we pause and see all four of our children enjoying something that expands their world … our whole family out together living life, doing, going, trying.

I want to try for these things at least.

So, this holiday season, my challenge for me… And for all of you is this:

Pick one thing that will expand your world. It can be small, or something you’ve wanted to tackle but just haven’t found the gumption to do it.

See Zoo lights. Visit Santa at the mall. Travel to see the grandparents. Go to a friend’s holiday party.

It’s easy to do what we know, and stay comfortable. And I know, comfortable is a step up for a lot of us.

But let’s try to pick something new and do it. I need camaraderie to follow through.

Remember:

-You need to plan.

-Set your expectations low (that way if anything works out you will be pleasantly surprised).

-Prep your kids.

-Pick the best time to attempt the outing.

-Bring extra clothes, and toys, and food.

-Pray.

-Think about how long your family can handle staying… And then plan to leave 10 minutes before that time. Set yourselves up for success.

You will sweat through it.

Some choice words may fall out of your mouth. One of your kids will probably have sensory overload. You may find yourself in a dark corner of the new environment coaxing your child to stop her tantrum.

But you will have done it.

You won’t have said, “We can’t do it because of our children with special needs.”

And that counts for a whole heck of a lot in my book.

And it will count in your kids’ book, and at the end of the day, in your’s too.

So come on, pick one thing… And let me know how it goes… We can set up a prayer chain.

-Gillian Marchenko

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Gillian Marchenko

Gillian Marchenko is the author of Sun Shine Down, a memoir about her daughter Polly's birth and diagnosis of Down syndrome while the family lived in Ukraine. She writes and speaks about special needs, depression, adoption, and deep belly laughs and lives in Chicago with her husband Sergei and their four daughters. Most Sundays, you’ll find Gillian in the back row of the church Sergei pastors, bouncing a toddler on her knee and giving the older girls the look. The world is full of people who seem to have it all together. Gillian speaks up for the rest of us. Check out her website at www.gillianmarchenko.com.
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Latest posts by Gillian Marchenko (see all)

  • For parents who aren’t ready to celebrate Down syndrome during Down syndrome Awareness Month - October 7, 2015
  • Love pushes us to the front of the crowd, reflecting on a dual diagnosis - April 1, 2015
  • Letting go of self-sabotage on the special needs journey - March 4, 2015

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Filed Under: Gillian Marchenko, Living In The Moment Tagged With: doing more with our special needs kids, Gillian Marchenko, not alone, special needs, special needs holiday challenge, special needs parenting, Special Needs parents

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