Being a special-needs family during the holidays is extra special

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posted in Parenting

One reality special-needs parents face is the added difficulty in actually doing things outside of the home with your children. You would think these difficulties would be exacerbated during the holidays. Well, not necessarily.

My family and I at a Christmas party last week. Pictured from left to right: Ryan, Charlie (1), George (3), Frankie (5), Daniel (our 7-year-old with Down syndrome), and me.

In having a child with special needs, it’s not a matter of making sure your kids are all dressed and accounted for and hitting the road. It’s a matter of a million other checks and double-checks.

In case God-knows-what happens, do I have an extra change of clothes? Is the iPad charged in the event my child gets overstimulated and needs some calm-down time? Do I have a chewy tube in the car and a backup in the diaper bag so Daniel doesn’t chew on his clothes? Are we going to be eating anywhere, and should I pack a lunch in case there are no Daniel-friendly foods?

You would think that at a time like the holidays, when the hustle and bustle and going places are at a max, special-needs parents would feel pushed over the edge and trampled by a wild herd of elephants. Well, yes and no.

My family Christmas of 2010. Pictured from left to right: Husband Ryan, me, Daniel (then 2 months old), my sister Caitlyn, my sister Alyssa, my brother Jed.

As a special-needs momma, I can tell you that while the holidays can absolutely be crazy, it’s a different kind of crazy.

It is the one time of year most special-needs parents allow themselves to forget about progress and focus on just being present. It is the one time of year we let go of what we could have and should have done for our child, and reflect on what we were able to do.

Visiting Santa Christmas of 2011.

It is really magical.

Seeing Christmas through Daniel’s eyes reminds me of everything that is important in the world. It’s a world of family, love, and acceptance, and not all the other minutiae we bog ourselves down with every other day of the year.

Christmas 2012: Ryan, Daniel (2), and Frankie (6 months).

Holiday season 2013: Daniel (3), Frankie (1.5), George (newborn).

Christmas 2014: (L to R) Frankie, Daniel, and George enjoying a Christmas movie.

Christmas 2016. Again, watching a Christmas movie. We do more than just watch movies, I promise. From left to right: George (3), Charlie (11 months), Frankie (4), Daniel (6).

And one more of Christmas 2016, because apparently Christmas didn’t happen in 2015.

And our Down syndrome crew at this year’s party.

Yes, experiencing the holidays as a special-needs family is extra-special.

Photos by Whitney Barthel