I know I'm not alone in having a hard time with Christmas. Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds. But I'd dare to say it's harder for parents raising autistic kids than it is for most. I've been feeling it a lot this year---a very lot. I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way. I've been trying to figure it out---why especially Christmas? I think it boils down to the isolation autism brings.
"Christmas is for children". That's a phrase you hear a lot, and something I believe. Once you are an adult, your main role is giving a great Christmas to your kids. But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas? That is Janey. I am quite sure I could skip the whole bit and she wouldn't care. I could not have a single present for her under the tree, and she wouldn't even notice. I could not have her hang a stocking for Santa, and it wouldn't bother her a bit. It makes it all feel a little meaningless. I will still have presents for her and a stocking, of course, but who am I doing it for? I guess it's for me. In a way, she might be happier if I DIDN'T give her a present or have Santa come. She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then. And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for? (especially if you aren't very religious, and I am not)
All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes. It's yet another part of life that autism steals from both Janey and me. Writing this, I feel sort of petty. I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot. So why is it so hard now? I can't really explain. Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst. Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is. Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life. But a big part of it is sadness for Janey. I am sad she can't anticipate Christmas. I am sad that presents scare and not delight. I am sad she will almost certainly never have children of her own to give a Christmas to. I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine. I am sad for all that Janey will never feel or experience.
It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas. I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey. I hope you all have found a way, and that you find joy and peace this year and always.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
9 comments:
Some grieving, in these moments. And grief is real, in whatever moment it shows up. With grown children, and no grandchildren, I know that I do most of the Christmas traditions for me. My husband doesn't need to do it at all. Perhaps 2013 has just been a very hard year for many. It was for me. I am hoping and believing that 2014 will bring more peace, kindness, understanding, love for all. One of my sons is aspy,(aspergers) and always absolutely had to know that he was getting the one big thing he would ask for for Christmas. He would not rest, or let us, until he knew, yes, it was coming. And he absolutely had to know that no, Santa was a story, not real. Now, as that son tells me, we have replacement children, to help play Christmas. Without any children in the house, we invite friends' children to come make gingerbread houses. Two of them are very much in our lives, and we danced the Nutcracker in the living room together, had a wonderful time, maybe my best day all year. Someday, maybe you will gather the best of Christmas delights whether with children or not...Finding, practicing what nurtures you and gives you joy and playful fun in this season, and always. Perhaps now, in this time, the music can be a gift, and maybe, if you like massage, schedule three for yourself if you can. Treats for the soul, in some form or other! love, xoxo Susan
I wish I could say it gets easier and one day she will be aware. Honestly all kids on the spectrum are different. But I know age was the same way as a kid even as a teen. Now as a adult everything is different. Was it time? Was it us keep pushing her? Who knows but I do know both did play a part. Don't give up. Have a merry Christmas!
I think part of it, for me, is that nobody who doesn't have a kid like mine can fathom a kid not caring about Christmas - it's just so ingrained that kids like Christmas and birthdays. So people ask you around this time of year 'what does she want for Christmas??' and 'Is she so excited for Christmas' and there is definitely a wrong answer to those questions...if you told the truth, 'Nothing. No.', they wouldn't be able to comprehend it. YOU would look like the grinch, like you must not be doing enough to show them the joy and excitement of Christmas...so you kind of have to lie. And it is tiring to lie. And it feels bad. But it makes other people feel better than if you gave them the unashamed truth. So you are forced to decide whether you want to make them uncomfortable or yourself uncomfortable, and neither is a good choice. Was that too bah humbug? Well, she does love the dinner :) We have some great video footage of us bribing, cajoling, demanding that she open her stocking and presents and her crying and whining....what parent has that experience but us?? We find it amusing now and make jokes about it, but it really is a different world from the one most people can imagine.
There's a bright side when your kid has no demands for Christmas. We only buy cheap or educational toys. My daughter still carries around a rubber glow-in-the-dark rat that cost $1.50 after Halloween. We have piles of baby stuff we plan to give to Goodwill. I just don't understand why people go into debt buying gifts that usually end up just taking up space. I wasn't raised in a rich home where all my wants were met nor in poor home obsessed by what we didn't have. Most people can't remember what they got for Christmas or who they gave it to nor on the giving side either. Me, I remember the 1973 Christmas Without Lights, playing in the snow (Georgia is boring in the winter), Christmas lights, my Mom driving us around to see the lights, getting sick on candy, seeing the relatives, having a Christmas tree . . . my kids only see the tree as something attractive to pull on.
I was just thinking about what funny stuff her family did to get age interested in gifts. Is Janey at all a sensory seeking. For instance loves shiny stuff or beads or a certain fabric or color? Age was addicted to everything purple and loved feeling certain textures. Still does but now it's more towards royal blue. Anyways we would wrap the presents in certain textures or crazy design and shiny wrapping so she will be interested. Then the key was she had to be interested. Not love it or else she would not let us rip it. Then once we grab her interest. We do hand over hand and avoid any biting and plug our ears for the screaming cuz she hated being touched and rip the paper and shake it all about to give her eyes visual input and ears. Then in the box would be stuff she needed like clothes and something she be interested in like beads. Of course once she saw the beads she was happier. Then the key was redirecting her to next box and so on. It was differcult but she loved the wrapping paper and her 50 cent beads ha ha.
It's funny reading your stories and how each of them sound like Age as a kid. Still to this day you mostly hear of boys with autism and I really believe there is a difference between boys and girls with autism. Age is the same way carrying stuff. During the summer she found a rubber crocodile that squeaks on the boardwalk and that crocodile is still in my car along with her rubber bat that I can't remove for some odd reason. She also carries around a rubber dinosaur Everywhere she goes. His name is Dudley. When she was a kid her toys consisted of 25 cent cat toys believe it or not. Most kids would want babies or dolls nope you would go into a pet store and you would leave with a happy age over a 25 cent cat toy and that was all she wanted. Or a pot handle which she took off of a pot many years ago and carried around wherever she went. Getting Christmas gifts weren't hard just go to the pet store or dollar store or some thrift shop sadly it could have been as easy as buying a piece of a certain fabri c but getting her interested was the hard part. She hates anything getting in the way of routine.
Just this morning she flipped out on me and I had no idea why. Come to think of it I brushed my teeth too early!! I didn't even realize there was a morning routine but to her everything is routine and memorized. I gotta go to the bathroom at a certain time or eat at a certain time. Everything is structured. It's crazy. Anyways with Janey would a music box just wrapped in a fancy or sparkling bow attract her attention?
Thanks as always to all of you! I am being truthful in saying you have helped me feel a lot better about Christmas. Age does sound so much like Janey! I was laughing a bit at the routines that you don't even know exist but that you have to follow! And the pot handle she carried around---you never know what the special thing will be!
Sara, you get it as always. It's very hard when people ask that question "Is Janey excited for Christmas?" It does make it seem if you say no like you aren't even trying. I laughed in sympathy thinking of the video of Tate not wanting to look at her stocking and presents. That would be our Christmas videos---not the kind they show on commericials! Susan, my older son also always wanted to know what his main Christmas present was. It just was too much for him to be surprised. I love thinking of you with the friends' children making the gingerbread houses and dancing around! It's comforting to know others have a hard time with the season, and find their own way to enjoy it. David, it's so interesting you mention the 1973 Christmas Without Lights. I was 7, but can't remember it, but a friend mentioned that to me just a few days ago, and what an impression it made on her. It shows that "little" things like the lights and the candy and all are what we really remember.
And thanks to Amy, Janey's teacher, I did think of a gift to have under the tree I think Janey will really like---a big box of different wild colors of nail polish. If you know me in person, you are probably laughing your head off right now, as I am not a nail polish type of person, and I never dreamt I'd be buying it for my 9 year old, but she loves it when she gets her nails done at school, and I think she'll be delighted by the sparkly stuff in this pack. Just having something I think she'll actually like (although she won't like opening it) cheered me up a lot!
I just googled "what if my autistic child doesnt know it is Christmas" and got here. My name is Katie and I'm a single mum to Alex who is 6. He is my only child and world, he has autism too. I can relate to your post 100% and could web written nearly every word. I was in tears by the end. My heart is broken and I'm finding this Xmas very hard indeed. Alex couldn't give a damn another presents infact he is just confused why there is not a happy birthday cake (he just loves that song....) and keeps asking for the cake. I've spent a fortune on gifts only to feel confused about why I'm spending so much on child who will who indifference. If you want to talk please email me- it might be good to have someone else that 'gets it'. All he best, Katie
Please excuse all my typos. God knows what just happened there... Opps - I blame autocorrect
Katie, so glad you found the blog! I hope you join the Facebook group too. I know the feeling exactly of spending lots of money on gifts, knowing they will not be liked or even welcomed. It is cute that Alex looks for a cake! Janey one year did ask for a cake when I asked her what she wanted for Christmas. It was the only time she ever answered that question, and now maybe I get it---birthdays and Christmas probably do get confused! Although she doesn't like birthdays much either. It is always so wonderful knowing there are others out there going through all this. I will be thinking of you on Christmas!
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