The Good, the Bad, and the Ugly of Christmas Time with an Autistic Family Member
Yes it that time again! ‘Tis the season of goodwill and glad tidings! And for our family the holidays also include these familiar sentiments too: horror, humiliation, and fear.
I have a child with autism you see – well he is no longer a child – mind you, but a young man of 14, and since his diagnosis at 2 years old, things have never been the same for us during the holiday season.
When our son was young, as the Christmas season approached I would start to worry. I would worry about him getting into the all the unattended food (well, actually that is still a problem). As well, I would worry that he would show no interest in the gifts, activities, or family traditions as per usual. Basically I would worry that autism would keep Christmas from coming once again.
As the years have gone by I have worried less, and stayed home more. I have really pulled back on all Christmas cheer in general.
I have learned that I can’t make my son comfortable, and my family & friends comfortable at the same time. It’s just impossible so I am done trying.
Christmas from my son’s perspective is a good thing. This is due mostly to the fact that it is predictable (it comes every year, and on the same date so take that Easter!), it has cool decorations (sensory heaven – hello!), and it has tasty eats (he has a general love for all food items that fall in the “junk” category).
That’s some of the good, but there’s a dark side too.
For our son, this time of year also produces terrifying anxiety due to the disruption of his routines, the inclusion of countless, crowded activities, and not to mention all the surprises! (All things new or unexpected are bad!)
As for the ugly, Christmas is one of those times that our family differences are much more acute. That is perhaps why this is such a depressing time of year for many people whose lives seem less than ‘matching Christmas sweater’ perfect.
As a child, our son never had a voice to share with us about what gifts he might want for Christmas. At that time, getting him to even acknowledge most toys was a heroic feat – in and of itself. Still, I would go shopping in the hopes I would find a toy that he would enjoy. What you need to know is that I didn’t just want him to like the gift – my true Christmas wish was to find a toy that was so awesome as to erase his autism – if only for a few moments.
We didn’t do a lot of the standard, holiday, family things when our kids were little either since our son was not typical, and most public events are not designed to be ‘atypical’ family-friendly. When we did attend a holiday event there were always plenty of stares to contend with anyway. To be honest it has been easier for me in the public realm with my son since I have lost my hearing – at least I don’t have to hear the comments as well anymore.
Looking back, I think I choose to attend a lot of these events in the past because I was hoping for a moment of normalcy, or brief escape from our challenging reality. I was hoping for my own Christmas miracle, but instead most of the time I went home feeling like I had just experienced the ice bucket challenge at 20 below.
At present, I am pleased to say that my son has what I would describe as a toddler age appropriate response to Christmas. Unfortunately he is an adolescent now, in full puberty, and not really what I would call stranger-friendly. (He has more of a linebacker physique these days.)
Due to his chological age and size, people don’t respond to him as they would a sweet, curious toddler so again he (and us) are sidelined. We don’t fit the magical family image at Christmas celebrations so we are often asked, or shamed into not participating at all.
I remember when my son was 6 years old we attended a hockey game as a family utilizing a box suite with two other young families who also had autistic kids. The camera panned our family while cheering for the Local team and displayed it on the big screen sans my son. He was on the end so he was easily edited. He was looking pretty weird as usual, and I get that people don’t want to see that – it’s ugly. It breaks the spell, but I need to say that even though I understand why it happens – it still hurts because that’s not what I see – I see my son.
So I am coming out of the special needs family closet because I can’t pretend anymore. We don’t fit in – at all, so I thank you for not expecting us to. Ever.
Well that is it – this festive season you won’t be seeing much of me and my family, but please know that we sincerely wish you the best of the season. Finally as we fly away for the a bit, and dash off for a break let us be first to exclaim to you and yours –
Happy Christmas to all, and to all a meltdown-free night!