Playing Santa is Sometimes Hard

Kate and Santa

When my daughter Kate (who suffered a brain injury at age 2) was young, we’d go see Santa and take the annual picture. Positioning her on his lap, wiping any drool away, and maybe even getting her to smile meant we had to find the really patient Santa and go when there wasn’t a line of other kids waiting. I knew exactly which mall had that good Santa. Kate wasn’t verbal, so at least she didn’t have a long list for him.

Let’s talk about that Christmas list for a bit. Most kids, by the time they are 3 or 4 years old, have this whole “presents” thing mastered. They’re able to rattle off an amazing litany of toys with very specific requirements. Even if they won’t sit on Santa’s lap and tell him item by item what they really, really, really want, lists are made and letters to the North Pole are sent. In other words, most parents have a pretty clear idea that, come Christmas morning, the toys waiting under the tree will be a hit.

However, when you have a child with special needs — especially one who scores well below the norm in expressive language skills — it’s hard to know what to shop for at Christmas. Should we get age-appropriate toys? That’s much tougher as the child gets older and the options decrease. Should we look at toys or activities that promote development? Can’t I just get her a stupid Barbie? That’s what her sister wanted at that age.

Target Toys

How can you make a child’s eyes light up if she can’t tell you what makes her happy?

I clearly remember trips to toy stores at Christmas, walking up and down the aisles, trying to find something that might make Kate’s eyes light up on Christmas morning, just like my other kids. Many times, I left those stores in tears with another stuffed animal to add to her ridiculously enormous collection, or with another silly toy that could be adapted with a switch she could hit to activate light and sounds. Batteries were never included, so a $7.95 toy wound up costing $49.95 by the time it was adapted and fed four D batteries practically every day. Did she enjoy those toys? I guess so. Did they make her holiday bright? I have no idea.

When Kate’s grandparents, aunts and uncles, or siblings asked us for gift suggestions, we couldn’t help them. No, I needed those rare ideas for myself. Another wrinkle: Kate’s birthday was in mid-November, so if we scored on her birthday, Christmas became that much harder.

Spoiler Alert:  This is not one of those inspirational holiday posts where the true meaning of Christmas is revealed.  I know that in the grand scheme of things, gifts are not what makes a Christmas good or crummy. I also know that my daughter was truly loved. But playing Santa and watching your children open presents that make them squeal is one of those moments that makes being a parent so rewarding.

For most families, after the flurry of wrapping paper settles, the happy shouts die down, the missing instructions (or the tiny but important piece that accidentally got wadded up with the wrapping paper) are found, many of those toys come to sit in the corner, ignored or forgotten, once the newness wears off. I guess we just skipped a few of those steps with Kate.

Kate passed away at the age of 26 — almost four years ago. I miss her terribly every day. Do I miss the frustration and challenge of finding the perfect Christmas present? You bet I do.

Take care of yourself

imgIt should come as no surprise to parents of children with special needs that holidays can add to the stresses already present in our lives. In a survey done by the authors speaking at our Author Luncheon Benefit this coming April  in their book Married With Special Needs Children, some common causes of stress in couples raising children with special needs include:

  • lack of a diagnosis
  • information overload
  • financial issues
  • time constraints
  • mental and physical fatigue
  • dealing with the reactions of others

Give yourself a gift (or two) this holiday season: Take care of yourself! Put on your own “oxygen mask” so you are able to take care of your child and your family. What might this look like?

  • write in a journal
  • exercise
  • take a walk — enjoy nature
  • practice mindfulness…slow down…breathe…have quiet time
  • vent to a friend
  • carve out special moments with your partner, even if only a few moments in the morning over coffee
  • share appreciations and moments of joy
  • give yourself a pep talk if feeling overwhelmed
  • give yourself a “time out” if feeling frazzled (this also models for your children that everyone needs time to regroup)
  • use sayings to focus: “one day at a time,” “first things first,” “this too will pass,” “don’t sweat the small stuff,” “progress not perfection”
  • decide what things are most important and focus on those
  • laugh
  • learn how to ask for help and accept it
  • create informal networks of other parents of kids with special needs to rotate respite times and help each other
  • share the positives about your child, his or her interests and strengths
  • seek out others who understand

The Matrix Yahoo! group can help connect you with other parents (click here to sign up), and our Parent Advisors on the Helpline, 800.578.2592, are great resources for respite referrals and emotional support.

The art of the present

Child giving a gift

For kids who have a hard time taking the perspective of others — kids with “social thinking” challenges — coming up with presents for Mom, Grandpa, or a school buddy is a near-Herculean task.

After all, a present is a way of saying, “I know you, and when I put myself in your shoes, I think you would like this.”

My son, who has an Asperger’s diagnosis, doesn’t do that so well. He is great at thinking of stuff we should buy him. He is the king of online browsing. While I cook, he tells me about various toys in great detail, then emails me the links to buy them.

But he’s not so keen to shop for others. His gift-buying for friends and relatives has always been heavily facilitated.  I suspect that this aspect of “thinking of others” needs to be explicitly taught.

So this year I made a worksheet that breaks down the steps involved in buying a present. Here is one he filled out for a close relative:

Gift Worksheet

Step 1: Brainstorm about what the person likes. Note there are two ways to think about this: by interests and hobbies, which are more abstract categories (“science”); and by what the child has seen the person enjoy, which is more experiential (“frozen yogurt”).

Step 2: Building on the ideas in Step 1, come up with some ideas for gifts.

Step 3: Figure out where the gifts might be purchased or made.

Step 4: Follow through! After your child makes or buys a present, let him or her check off the box and write out what is certainly the world’s best present. If you’re offering positive reinforcement, follow-through should be a big part of earning the reward.

The worksheet pictured led my son to buy a little jewelry kit online. It has arrived, and we will wrap it, but the best part will be watching him revel in “ooohs” and “ahs” when his Nonnie opens it.