The holidays are a time for family which is absolutely horrific on the face of it, it’s just a little worse if you have a family member with behavioral issues. Here’s the truth: No one is excited about seeing my adult autistic daughter this Christmas. I’m about to drive over 1,100 miles round trip with my adult autistic daughter because SHE wants to see her family.
Talk about all the feels. She can’t drive home and I can’t put her on a plane or a train and even if I could, no one at her wonderful home would get her. Where’s the fucking Christmas magic, all of you believers?? Not one single person has asked if she is coming home for the holidays. NOT ONE. Now, it could be that they all know that I would immediately ask if they would like to take her for a few hours so I could saddle up to the bar at my hometown BW3’s for as many drinks as I could possibly slam in a few hours or MAYBE they just don’t want to see her. Worst yet, maybe they have forgotten about her.
Like many people with behavioral disabilities she has not one friend. None. Now, a lot of charities will pitch in and she always has a ton of presents thanks to Angel Trees and other people who willingly and graciously donate their money to such causes and honestly I really do appreciate that. So she will have a ton of crap under the tree in her efficiency apartment where she eats most of her meals alone every day. So there’s that.
But every year, she makes lists of people that she wants to see without any idea that their lives have drastically changed since she knew them in her hometown so many years ago. Many of the then college students who worked with her when she was younger, the woman that she associates with “home”, have small children of their own now and really, honestly do not have the time to see her. Part of growing up is understanding that life changes and people move on so I’m not upset about that. It still hurts, I mean it really does hurt but growing pains work both ways when you have kids.
The extended family gatherings she would go to when she was young, gatherings that still happen with her cousins who now have kids of their own really can’t accommodate an adult five year old who just may start yelling “fuck!!” at any second….what would they tell their kids? And how much of a bummer would it be for the pregnant cousins to see what may be in their future? Part of me wants to drop her off at the party as I did last year but part of me knows that it’s just unfair.
Another part of me wants to tell the family to suck it up and deal with it. We don’t get to choose our family, that’s why they are mostly all so horrible! So the intellectually disabled woman may yell FUCK or sit too close to you or may just start singing a song really loudly….she may even have a seizure. I’ll tell you what she won’t do, get drunk and puke in your bathroom or hit on your boyfriend or hold a grudge about something you did 12 years ago.
I really want a holiday free from wondering if my daughter would spend every Christmas alone in her apartment were it not for my ability to drive and the extra time and money to take her home. I would like to go home, wallow in my own feelings and enjoy the people and places that filled my childhood holidays with such unencumbered joy.
I wish she hated Christmas. I wish she could break free from whatever in her brain won’t allow her from being eternally five years old. Santa..are you out there you big, fat fuck? Can’t you do a girlie a solid so she can enjoy this stupid, useless holiday?
Nope. Ok, fine.
These are the times I’m supposed to forgive, and love everyone warts and all. But it’s hard, people. It’s really hard. I resent my shit bag extended family for not asking about my daughter and I’m jealous of their ability to make her “out of sight out of mind” and then I hate myself for feeling all of these ways.
Every year I have the same conversation with my husband along the lines of “can’t we get a Medicaid staff member to make the 1,140 mile round trip with us? Sure, if we could get a hotel for them and then get a rental car for their use and ask them to leave their own family on Christmas. We already need to get a hotel for the autistic daughter because she wants to swim before bed and it really does help with the unnerving and upending of her schedule. (There’s another shit situation, as much as she does want to go home, it’s also really taxing on her. Her coping mechanisms are stretched and we need to accommodate her needs because, well, she needs that.) If we had an extra $1,200.00 it probably would not be an issue to get someone to go. But I’ve done this before and it always falls of me to make all of the schedules and the plans and for as long as my family has had autism in their lives, they have never been ok with the extra people involved. OR they pay more attention to the staff than to my daughter which is pretty disgusting, too.
As I get older, it gets worse. I’m 50, on the south side of middle aged and my give-a-damn is really starting to give way. You would think that I would have developed coping mechanism or a system for dealing with the holidays but every year it gets more complicated. Now my mom is elderly. It’s all about her, now. And as your parents age you become more and more of a child and they need the care that they (sometimes) never provided to you. All of your resentments may surface and boil over but it just doesn’t matter. It is, as they say, what it is.
Last year I swore that this year I would stay home. I sat in a Courtyard by Mariott after a Christmas day filled with resentments and faced with the newly falling apart childhood home (complete with a leaking toiled that leaked ONTO the only other toilet below) and I swore NEVER AGAIN. Then autism set in and my daughter asked to go home and I said yes. Now, my only hope is a giant blizzard because I will not travel through the mountains when they are snow covered.
So this year is sunk…maybe next year I’ll bag it. Maybe I’ll muster the courage to tell my autistic daughter that I can’t do it. Maybe Trump will have blown us all up. We’ll see next year.