Tyler and the Christmas Season

He doesn't care about Christmas.  The end.

Perhaps it's not QUITE that simple, but this really does sum it up for him.  Christmas was a time that of course we all wanted to gear up for gatherings, presents, and the cheerfulness of the season.  For Tyler, much of it was quite the opposite.

What we saw as a cute photo opportunity with Santa, he saw as some stranger in a red suit making him sit on his lap.  What we saw as cool new toys wrapped in wrapping paper, he saw as distractions keeping him from his old toys that he wanted to play with.  What we saw as visiting and gatherings, he saw as overstimulating crowds.  

I always try to put myself in his place by thinking...what if I crash landed on a deserted island, didn't know the language, understand the customs, or knew what was going to happen to me next?  This is how he lives his entire life.  Christmas is not something he understands the way we do.  

When he was very small, we had an easier time getting through the holidays.  Tyler liked to go along with whatever we were doing.  But as he got older, things changed.  We would buy toys for Tyler that we thought he would enjoy, or that we thought would help him learn new skills.  Many of these toys would sit, untouched, in a corner of his play area, or in a closet.  As he became a teenager, opening gifts would actually make him angry, so we would have to spread the gifts out over a number of days, or wind up opening them ourselves.  As often happens with customs and abstract things that he could not understand, we struggled to let them go.  What kind of parents were we if we didn't buy our child lots of presents?  What kind of parents were we if we didn't give him the joy of Santa and Holiday parties?  

For Tyler, and all individuals with special needs, its about giving them what they truly want and need that is important.  Some may be excited with the lights and the joy surrounding Christmas, while others may need it to be more intimate and quiet.  We now get Tyler a gift basket full of treats and sweets that we know he likes.  We also take Tyler out for his favorite Mexican dinner and spend some time with him.  We also get him a few gift cards to eat his favorite foods throughout the year.  We might get him some new clothes if he needs them (which he rarely does).  In total we might get him one or two gifts to open.  It feels sad to even type that statement, as he deserves as many gifts as we could possibly bestow upon him, but when he gets angry at opening presents, who am I to argue?  That's the unfortunate irony, he deserves so many gifts, but he doesn't want them.  Not material gifts anyway.  

I do remember one fond memory at Christmas that I will always hold onto.  We were living at a former house, and Tyler was about 10 or so.  We had discovered that he loved ball pits at the local play land places.  We found a blow-up version that would hold hundreds of these plastic balls.  We set it up on Christmas eve, and grabbed the camera Christmas morning.  He came down the steps and looked around the corner.  You could see him take a second to process what he was seeing, then he ran full speed, jumping straight into the pit.  By the sounds he was making, we could tell that he was thrilled to have it.  Eventually the actually pit would deflate so often that it became a major pain, so we dumped hundreds of balls into a kiddie pool, and kept this in his room.  For months we would hear him launching himself into the pool early in the morning, or catch him sleeping in the pit overnight.  It was one of those lightening strike types of things that we would always work hard to find.  

If you are a special needs caregiver, and you struggle during the Holidays, you are far from alone.  After all, we have the things that we picture as being the way a Holiday is made.  We also have the world around us advertising how we should celebrate.  Then we have the special needs way of doing things, which often physically and emotionally conflict with everything else.  It can actually make the Holidays more stressful and even isolating.  We want to be able to tell stories about our children passing out from excitement at that one really cool gift, but often the experience is quite different.  It's ok...thats the world we live in.

Its important for us to remember, that caring for our loved one is the most important thing.  Our greatest gifts to them, and to each other, is to provide a strong spiritual foundation, a loving environment, safety, and security.  Everything else is just red suits and flashing lights.

Have a very Merry Christmas and Happy Holiday season!   Tom