I’ve written about our yearly adventure to find a Christmas tree each year ((You will see them linked below.)). It’s one of our favorite Christmas traditions, one of the few traditional Christmas activities we can enjoy just like everyone else. In many ways, Christmas is a season that seems particularly designed to hurt parents of kids with special needs.
We don’t live in a world with happy Santa visits or excited Christmas mornings opening presents…we live in a world of sensory overload and anxiety. We live in a world where Santa is the most amazing thing EVER but going to see him is terrifying. The crush of people at the mall, the loud music, the long lines and the bells…OMFG the bells!!! Will they not stop ringing the damn bells for 30 frickin’ seconds???? Ahhhhh!!!
Christmas morning is not much better…the excitement of unwrapping a gift plus the anxiety over the fact that he doesn’t know what is in there?! Will it make noise? Will it light up? Is it a pair of damn socks? It all builds up and leads to an overloaded, crying, snot-shmearing Monkey. Not fun.
Over the years we have gotten better at managing these issues. We don’t go see Santa. We watch him on TV instead and write him a letter. We don’t “make” Monkey open gifts. If he opens one every hour for days, that is OK. Whatever makes him happy is what makes us all happiest. But…finding ways to work around these issues and make it better doesn’t make it hurt any less. It hurts that we don’t get to see a happy excited Monkey sitting on Santa’s lap or happily opening gifts with the rest of the grandkids.
Hunting for a Christmas tree though…that’s always fun. We can do that! We’re outside, we can run and yell and scream with joy. We KNOW what will happen next! We will walk in the fields, we will cut down a tree, we will carry it to the truck, we will bring it home and Money will make it shine. Every year, just the same. Every year, it’s just as fun.
This year we bumped into a reporter from the Worcester Telegram & Gazette, he was so amused by Caleb’s obvious joy that he included us in his article, Tree Shopping.
No, there’s no mention of fragile x syndrome in that article because this is the one day, every year, when we can most easily pretend we’re just like everyone else…because we are. We’re just a family out looking for the perfect tree to bring us all joy.
And we always find it.
Love love love love LOVE!! Sniff sniff….
Such a fabulous story! So true too, about the holidays and how it’s HARD!
Melissa- Do you mind if I repost this? For some reason, this Christmas is the hardest one yet…it will be Brayden’s 3rd one and I think that the older he gets, the reality that he doesn’t have a clue/care about the holiday (or any holiday!) gets stronger, therefore making me sadder. His 1st Christmas he was only 9 months so it was understandable that he didn’t “get it” but now when strangers ask if he is excited for a holiday I want to say, “no, he doesn’t give a rat’s ass….” So, anyway, I’m trying hard to let go of my fantasy Christmas and you have done a beautiful job of putting into words what so many of us are going through 🙂
Absolutely, you can share this. Also, if it helps at all…Caleb didn’t give a rat’s ass until last year? Maybe a little bit the year before but last year was the first time he anticipated it…he was 6. This year he started asking for a tree and Santa in July. It’s so hard.
Thanks! It gives me hope that one day maybe he will “get it” too!
love it!!! so glad your day was so great!
I have to agree the first few years are the hardest. You try and do the normal Christmas stuff like going to see Santa and you end up with a picture of your son crying on Santa’s lap. We also tried for a picture of the grandkids in front of the Christmas tree. That ended up being a photoshop job of close to a dozen different pictures. Even recently we thought we’d tie in his love for trains and do a polar express ride. The train ride was great, but once we got off to go listen to a reading of a book we’ve read to his dozens of times and see Santa, he had no part of it. It’s taken a while but we’ve found that one thing that he absolutely loves about Christmas.
You should be proud of that Photoshop effort! They were all so little, it was like trying to herd cats. Deb hasn’t suggested another attempt since either, has she?
So many lovely ladies who get it…it makes me feel so very lucky to know you all! Thanks for all the support and kind words…my ego loves it 😉
My boys are adults now (27 & 21) but when they were little, they loved going to “chop down” they called it a Christmas tree. I miss those days. I DON’t miss the sensory overload of the bells, loud music, fake Santas that would send them into a meltdown, etc. You say so well what I feel as a FX Mom. Would it be ok for me to post your Blog on the FX of So. CA FB Page?
Yes, absolutely please feel free to share!
So the sensory overload of the bells, loud music and fake Santas are nothing new…they’ve been making life miserable for generations of kids with special needs 😉
Thank you so much for sharing. Once again your words helped me to learn something new. for those of us who aren’t connected to FX but are here cheering you on it really helps to understand what you go through during these times. I was against the tree going up so early (you had a post some time ago about C being excited for Christmas and now you are too) what I didn’t realize is his Christmas is not the same as most of ours. He gets simple pleasures out of having a tree. Most kids these days are so “into” wanting the biggest, hottest ticket item. I love that Christmas for him is simple. I love that it can take him weeks to open presents because he gets sensory overload. I know kids who just want more and more and more (talk about overload) but they rip through one gift w/o appreciating what they have just opened. I think in many ways my idea of Christmas is how C sees it and enjoys it.Maybe many of us should start taking lessons from him and others with FX?
OK, Nicole, you just made me cry! There is a lot of beauty in seeing the world from Caleb’s perspective…I don’t always remember it because I’m so caught up in how it was for me and how it seems to be for so many. Thank you! I <3 you!
Ditto. Very well said Nicole!
Love your story. Liam is still in the doesn’t get it stage. Thankfully, Christmas isn’t particularly troubling for him but we are always low key. No big family gathering, just our little family and a grandparent or two. Hopefully one day he will at least enjoy opening a gift to see what is inside. Right now, his sisters usually open them or they would sit forever unopened. So far he does fine with a Santa picture with his two sisters. We’ve managed every year but I try to go at a very non-busy time so there is little waiting. And yet again, he could care less, it is just for us to say we have the picture — some are good, others not so much but with three kids, they are never all happy at once FX or no FX! As Nicole said above, I find Liam’s non-interest in Christmas gifts refreshing. So nice to have one of three children that doesn’t want, want, want. I’m thankful for my two non-FX kids, of course, but hope they learn a little from Liam who does find joys in the littlest things — a tickle, a ball, a game of chase or hide and seek. Through him, I hope they truly understand that Christmas isn’t all about gifts and what you can get, it’s about finding joy in each other and being thankful for all our blessings in this most holy time of year!
Great post Melissa!!
OMG! Great blog! The bells thing cracked me up cause my husband always makes fun of me cause I hate those f-ing bells and I always make evil comments as we are walking up to the stores about the damn bells! Lol!
Thanks Kristin, those bells bug me as much, maybe even more, than they bug Monkey. They make me beyond grumpy!
Right on the money honey! Ours isn’t the cutting of a tree (Josh HATES to be outside in the cold), it’s the inflatable Santa Clause his sister gave him years ago. It is different than most people’s Christmas, but the simplicity is rather blissful at this point of my life. <3 Love you and your blog so freak'n much! <3
Nice to know that there are other parents feeling the same way.