GOD…..it has been ages since you heard from me. And I just realized why its been a while.
Today is Labor Day, and I am reminded of how much I hate holidays. Which then made me want to blog about it. Which then made me realize I haven’t done so in a very long time. Which then made me figure out why.
I guess I tend to blog when things are kinda shitty. Its cathartic, so it usually makes me feel a tad bit better after getting it off my chest (or through my fingers, in this case). I had a ‘hater’ once tell me how negative my posts were, to which I responded that she didn’t have to read it. But lucky for me, some people do read it and actually want to hear about the struggling side of autism. So here it is!
Holidays are hard for many autism families, and especially our household. My husband has to work 9.5 holidays out of 10, due to the 24/7 healthcare field. And I am stuck with autism all day, usually in the house, because we haven’t been invited to a Labor Day party in YEARS! However, even if we were invited, the likelihood of actually going is slim to none. So I guess I should be happy I don’t have to turn someone’s invite down, only to leave them clueless as to why it’s THAT hard to bring Keegan to their house.
Why is it that hard, you ask? Here’s why……..
To begin with, no matter what you have planned for the menu, I can guarantee you that Keegan will not eat one bite of it. It’s not because you are a shitty cook…..believe me. To make you feel better, he rarely eats anything I cook, unless its Tyson Chicken Fries (but they have to be Tyson and they have to be the fries, not nuggets, or he won’t eat them), or the Birds Eye parmesan and spinach pasta (but it can’t be the one with the chicken or he will gag, and possibly puke just by looking at it), or the Applegate organic beef hot dogs (but it can’t be Oscar Mayer or the Applegate chicken hot dogs, because when he sees that they are not the right color, he will throw it on the ground), or Sea Pack clam strips (but they have to be cut into the perfect size and served on the blue plate, not the red, because he only eats chicken on the red) . In which case, this will all make you think he is being a picky, spoiled little brat. But you couldn’t be further from the truth…..he is being autistic. Therefore, the fact that you went out and bought a huge bag of goldfish just for Keegan is extremely sweet of you, but because you didn’t get the “extra cheddar” ones, he might have a meltdown. And then I will feel bad that you went out of your way to do something sweet for Keegan, and it backfired. And I will have to explain to all the onlookers that no, Keegan is not scared of goldfish, just the ones that aren’t extra cheddar. Haha!
And that’s just some of the food part.
The other issue is me getting the opportunity to actually eat what you cooked. I will be so busy following Keegan’s every single step that it’s impossible to hold a plate, a drink, and a fork, and have enough hands to grab Keegan when he tries to climb your fence. And lets hope you actually have a fence, because if you don’t, my husband and I will probably not hear one word you say, let alone eat your food. We will be too busy chasing him around the yard because he doesn’t understand safety concerns, and doesn’t get why you can’t chase the ball out into the street, or jump in the neighbors pool.
And that’s just the outside.
If you have any of the festivities inside your house, forget it. There will be no breakable objects left unbroken. Especially anything that resembles a ball. Keegan thinks that everything bounces, and will do anything he can to test that theory. Even climb your armoire where the snow globe sits, which will no longer be in the shape of a globe if Keegan gets ahold of it. And the armoire may not have handles or functioning drawers anymore either.
And then there’s the pica. Many autistic kids have this disorder. For those who don’t know, pica is defined as “craving and chewing substances that have no nutritional value”. What does this include, you ask? In Keegan’s case, everything that isn’t food. So when Keegan is not testing the “bounceable” objects, he will be putting them in his mouth. In fact, I just read an article yesterday about an autistic child who would break lightbulbs so that he could eat the glass. That should give you a little idea of how unsafe pica can be, and why it’s impossible to not follow Keegan like a hawk.
And to top off the “reasons why we can’t come to your house for Labor Day”………the stimming! This could be anything from the wondrous noise of Keegan’s high pitched excited scream, or the incessant punching himself in the head as hard as he can, or the combination of both. You can tell me all day long how much that would’t bother you or anyone at the party, but you may change your mind after hearing and watching it for an hour.
I guess another reason why I felt the need to write this blog is because of something a co-worker asked me yesterday. She heard me whining about my husbands’ text telling me that Keegan had a second pee accident of the day and it wasn’t even noon. She then asked me, “Do you think he pees himself because he knows it makes you mad?” Now I know that this particular person means well, and may not have the best social skills on the planet, but I also know that was just ignorance talking. That particular question told me how hard it must be for people who live in an autism-free home to completely understand, the good and the bad. I fought the urge to sit with her for the next hour and tell her that Keegan is the least manipulative child there is. That, in fact, he cries sometimes when he has an accident and senses our frustration (even if we try to hide it), because he knows he did wrong and he feels terrible about it. I wanted to tell her that yes, you do hear me bitching about the struggles, but there are so many rewards. And that Keegan has the most precious soul of anyone I have ever met.
When my patients complain to me about how their spouse or other family member “doesn’t understand” their addiction, or thinks they should just “snap out” of their depression, I always remind them that nobody will ever completely understand your particular struggle. And that’s OK. All we can do is try our best to explain. I know that even those with autistic children as well will never know what it’s like in my household, nor will I ever know what it’s like in theirs. We can try to educate as best we can to avoid judgement, and hopefully increase some understanding and awareness of the struggles we all endure.
As I always say……I’m not telling you all of this for pity. If you want to feel sorry for me, that’s on you. But you shouldn’t. Yes, everything I said is true. Some a little exaggerated, and some with hopefully obvious humor. But it really is this hard, and that’s OK because Keegan is worth all of it.