… well, I don’t know. And that’s the issue I’m struggling with.
[If you gloss over the rest of this post, which I wouldn’t blame you for doing, please consider this one point as I’m really interested to hear people’s responses. How would you fill in this sentence: ‘All I want for (insert your holiday of choice here) is _____.” ]
I’m not talking about actual, physical, tangible, wrappable stuff. A 50-lb bag of coffee and a large, BPA-free bucket to drink it from has a certain appeal to it, as does a Barnes & Noble gift card (to buy more autism books!), but pretty much anything I could put on a list would be something I could live without. I imagine this is true for most of us.
Christmas is my favorite holiday. I do forbid Christmas music to be played anywhere near me until after Thanksgiving (we do one holiday, we do it well, and we move to the next one), but once the turkey plates are put away, I’m ready to make the yuletide gay.
The way we culturally tend to celebrate Christmas doesn’t strike me as particularly autism-friendly. We’re running around all over the place to see family or friends and going to crowded, loud, rude shopping places where everything glows, blinks, sings, moves, ho-ho-hoes, or in general attacks you wearing green tights and pointy hats. We are bombarded by a bazillion toy ads for stuff even the neurotypical children they are marketed toward don’t need but that almost always either aren’t appropriate or would hold no interest for our kids.
I think it was only last year that the J-Man showed any interest at all in unwrapping any gifts. It hasn’t been that long at all that a new toy in the house would even register on his radar within weeks of him getting it. In short, he’s never seemed to be one to much care whether he receives a gift like this or not.
We’ve tended toward buying things that would complement what he does at school and at therapy, especially for times like Christmas and birthday where others will pay for it instead of us. Various people look at us like we’re insane for having this stuff on our shopping list – like it’s the modern equivalent of a lump of coal – but this is something we’re getting used to.
Somewhere in the midst of the annual quests to find him a special something to put under the tree that he would love, he helped me figure out one of the essential truths about all this:
How could it be so?
It came without ribbons! It came without tags!
It came without packages boxes, or bags!And he puzzled and puzzled, till his puzzler was sore.
Then the Grinch thought of something he hadn’t before!
“Maybe Christmas,” he thought, “doesn’t come from a store.
Maybe Christmas… perhaps… means a little bit more.”
I’ve seen or read or heard the Grinch about a billion times now. I knew the words, but I didn’t really grasp the story in the way I’ve needed to. I don’t think of myself as a Grinch, but it’s pretty apparent that I’ve been acting like one, or at least like the Grinch’s cousin, lately.
Yesterday, I really wanted to put our tree up. I love our tree. It’s a really beautiful, 7-foot, pre-lit-with-white-lights tree. I’ve spent late nights every year since we’ve had it drinking hot chocolate and just looking at it, and it always makes me feel peaceful. I spend 11 months of the year looking forward to the soft lights that decorate our living room and kitchen, to hanging the decades-worth of ornaments – some with volumes of meaning – on the tree, and even setting out all sorts of tacky stuff we’ve gotten over the years just because it makes us laugh.
In the midst of our complete – perhaps even emergency – overhaul this week of our household structure, picture scheduling, and attempt at a full sensory reboot to help the J-Man’s rapidly escalating struggles, I just wanted to get that damn tree up. A day separated from it now, I realize that tree had turned into some sort of talisman for me that I hoped might ward off all this recent insanity and usher in some sort of holiday magic.
Last night, the J-Man refused to keep his pajamas on and instead kept stripping down, peeing on his sheets, and then lying there in all that wet. We’d go in, fuss at him, change his clothes and sheets, and put him back to bed. Then we’d repeat this, again and again. After an hour of this, we had run out of sheets and had tried every kind of night clothes he has. At that point, we just gave up. Eventually he went to sleep that way. We went in there, put clothes on him, checked his sheets, and put him back to bed asleep. But somewhere between 11pm and 6am he had stripped again, and he woke up with no clothes on and soaked.
But I was still determined to get the tree up last night. After five years of having it, I finally remember how it goes together. One strand of lights had lost a bulb, so the whole strand was out. I went and found the replacement bulbs, plugged one in, and it started blinking. I absolutely hate blinking Christmas tree lights! And I just started yelling incoherently at the tree, “Why the [expletive(s) deleted] are the [more expletive(s) deleted] lights [expletive(s) deleted] blinking?!?!?”
This should probably be seen as a sign that you need to fall back and get some perspective. But I’m a slow learner.
As Dr. Seuss says, “‘Maybe Christmas,’ he thought, ‘doesn’t come from a store.
Maybe Christmas… perhaps… means a little bit more.'” Now I know we could all head straight for the meaning of Christmas story here, but hold up a second. That’s too easy, and it skips over all the confusing, challenging, and frustrating questions we live with every day.
I say to myself, “All I want for Christmas is…” and I don’t know what to say next. It’s very hard for me to admit that. I could come up with something generic (world peace, a sense of normalcy, etc.), witty (sleep, sleep, etc.), trite (“for us all to be together” which I do, but that just comes out unconvincing, flimsy, and plain unoriginal), or laughable (I think a Wii sounds cool, but when could I possibly play it?). But any of that would just be me escaping the real issue.
And I think the real issue is perhaps that we spend so much time in our house now either in survival mode or in dealing with whatever is going on immediately in front of us that we have lost our ability to look forward and think about where we want to be, what our hopes are for our family’s future, and really anything that’s more than ten minutes ahead of now.
I suspect I know what my answer should be, though it’s not one I could say and really mean right now. But I still have three weeks to reflect on this, and certainly more to say about it as well.
So what does the holiday season mean for you now? Before you had kids, what did you imagine the holidays would be like after you did? What was the first holiday like after your child was diagnosed as autistic?
And how would you fill in this sentence: ‘All I want for (insert your holiday of choice here) is _____.”
Despite the familiarity of the words of your question, I find I’m a bit stumped, too. Definitely not a hippopatamus.
Your sentimentality about Christmas is endearing.
I’ve linked a blog with a daily toy review – directed at children with diagnoses – top box – the Seasonal Aisle, middle column, my blog.
I bet you have an answer by 3 weeks from now. Very Merry!
We have a very similar shopping list for Hallie. Lots of toys-cum-therapy-tools on it. And it kills me that, even though we’ve had this talk with my MIL about how ‘toys’ are not just ‘toys’ for Hallie and how we are very specific in our choices for her and send her the (expletive deleted) list WELL in advance of the holiday/birthday, she STILL buys something else that she thinks a three year old wants to play with and usually adds the statement, “when [neurotypical other grandchild] was three, s/he absolutely loved this toy!” And of course it ends up being a dust collector, something that gets taken apart, lined up, thrown, and anything but played with. I am demanding gift receipts this year when possible. And S. is going to talk to her mom about this after the fact. It must stop.
OK–what do I want for Christmas? For Hallie to be able to socialize/communicate better with her friends. For her sensory system to stay regulated. For her to eat more normally. All things that don’t easily fit down a chimney and into a stocking, in other words. I’ll settle for a date out with S. and a well stocked wine cellar/coffee bar.
Hang in there, guys. It sounds like it’s tough going right now and you have our hugs and thoughts.
This year has been such a mixed bag for us. Continued progress in speech, play, and self-care coupled with a thankfully brief but very unpleasant burst of seizure activity as well as watching his NT peers pull further ahead of him in all of the above areas. I guess if I had to wish for one thing, it would be for enough money for all of this to be made as easy as possible. Don’t know if that fits in with the theme, but there you have it.
This is tough. Holidays have been effectively de”wonderized” for me the past few years. It’s stressful on P. We don’t have the money for the gifts were not expected (but really we are) to give to extended family. P doesn’t get it. We can’t have a tree because it’s different, and tall, and a fun thing knock over…
I always dreamed my child’s Christmas would be wonderous just like mine. That they would wake up, come downstairs to a slew of toys and just bask in the magic of Santa. Then we’d have family time and curl up on the couch and watch claymation Christmas movies.
It’s not that way, as you well know. I don’t really get into it. I bought the gifts and family will be here…but it won’t be wonderous for us. It will probably be complete and utter sensory overload. But I’ll do everything I can to muster the requisite “joy” and “cheer” to give him as much of a miracle as he can appreciate.
As for me. All I want for Christmas is to hear the words “I love you, Mommy”.
Six months ago I probably would have said, I couldn’t wait until Christmas to see that look of wonder on my son’s face at the tree and the presents and having fun opening his gifts with us all together in our pj’s. Last year, my son was only 7 months old and couldn’t quite appreciate it all. That was pre-diagnois. The last few months have been very tough on us all. My son is healthy and I couldn’t ask for much more. If I could be selfish enough to ask, I would just want to hear ma-ma or da-da. I’d even settle for a nod of the head or a look into my eyes when I tell him “Do you know how much mama and dada love you”. I know I may have to wait many more holidays to have this but I know deep down it will come in time. I wish you all a happy and healthy holiday season!!!
Like so many others have written, I could wish for hearing my son’s voice or that moment of connection, or even a date out with my husband. But, I think, underneath it all, what I really wish for is the peace of mind that would come with knowing my son will be ok no matter whether I ever hear his voice or not, that he will be safe and loved and —if necessary— cared for with love, dignity and respect after I am not here to do that. If I had that peace deep within my heart I think I could handle the things that came along the way.
I echo what everyone above has said. Part of me wants a crystal ball to see what the future holds for us, but I’m afraid of what I might see. So what I really want for Chanukkah this year is a break.Not just a pedicure, or a dinner out, or few hours with a friend, but a real break from therapy and second guessing and worrying about the future. I want a break from autism.
Me, again. Tim, this post is linked into my top post.
I consider it very healthy to take a holiday break from therapy. Usually an interruption has to be handled specifically with the insurance coverage. The change in schedule can take some of the stress off parents, but depends on whether the child notices. Being school age or not is another factor. Childcare if parents don’t have same days off. Not an easy decision.
@everyone – thank you for all of your thoughtful and heartfelt answers. They made me tear up – the kind that come from knowing all to well the emotions they arise from.
@abby – Yeah, I think “don’t easily fit down a chimney” accurately describes the kinds of things most of us look for each day. I’d definitely settle for some respite and time out of the house with Mary! And the alcohol and coffee, too! I hear you about some of the gifts. Most of our family is to varying degrees clued in now or just asks us specifically what to get. I appreciate when people try to understand him and his needs, however it turns out.
@magicdrgn – Money definitely makes things easier. We took some money we saved from cutting back in other areas and hired a babysitter to come in a few hours during the week while we worked or ran errands or tried to get things done around the house or just got a break for a couple of hours. That’s been a godsend. It’s amazing how much that helps. Hope the seizure problems are OK.
@Debby – Our tree turned into an OK success. The J-Man mostly just went over and ran a few branches between his fingers and flicked the lights. He seemed to like to look at it and occasionally fiddle with a couple of ornaments. The tree may be mostly for my benefit, at least for now. The baby loved it, and obviously we’re developing traditions for both kids now. This year the holidays weren’t interesting to them in and of itself. Next year may be quite different. I imagine things may change quite a bit.
Let me also say that I went to tears when I read your last line. The first time the J-Man said that to me was at bedtime and he said it in his own halting, syllable-at-a-time way. I was all but sobbing when I put him to bed. I got out of his room and collapsed into a puddle in the floor of another room. I still get teary thinking about it. It’s like a big bucket of manna when things like that happen.
@Denise – That first post-diagnosis Christmas is an emotional one. Well, they all are it seems, but that one was rough for us. I think that’s part of a grieving process we all go through, realizing that what we dreamed our Christmases with our children would be like probably won’t happen that way. It does open the way for new dreams and opportunities, but that obviously comes with a whole set of challenges and hills to climb. I certainly haven’t figured this one out yet. I can probably go some ways through a checklist of things I’ve made my peace with, but Christmas still has a strong element of grief and sadness for me, and I’m not sure how long it will take me to work through that. I hope things went OK for your family.
@Niksmom – You describe one of my deepest wishes. I can live with a lot of things if I just know that my kids will be OK. I tend to not think more than a couple of days ahead, but the other day for some reason I slipped into thinking about us 35 years from now (at about the same age my dad is now) and worrying about the J-Man living independently and having people to look out for him when the time comes someday when Mary and I are no longer around. It was sobering and it made me very, very emotional. I realized how completely unprepared I am to think about that. Peace and trust are some of the best things to wish for, but perhaps the most elusive to find.
@JennieB – While I just said I want to know that things will be OK, I don’t want to know about anything that won’t be. I’m not in the mood for more fear and worry right now. We’ve found some ways to take brief respites here and there lately (an hour or two at a time perhaps), and that’s helped. The J-Man was with Mary’s parents all of last week. That was a sort of break from autism. We spent the whole week catching up on a thousand chores around the house, so it’s not like we got to lounge around, but it helped to be able to let all the forces I marshall everyday take a week off. For probably the last 3-4 months I’ve often wanted to just switch off for a while.
@Barbara – Thanks for the info and encouragement. I think I found the answer that was right for me this year. Whether I ‘got’ what I wanted is probably not the point. Perhaps it’s the pursuit of the answer that’s the gift.