The Ungrateful Side of Autism

I’ve said this before, but I tend to write when I’m at my wits end, so I guess that’s where I’m at! I feel like one of those people who only pray when they need something. Although, I stopped praying years ago, and this week reminded me why.

I’m surprised that I never did a blog post last year while Keegan was suffering with a medical issue. Due to his autism and inability to communicate what was hurting or what he was feeling, we were unable to diagnose or treat him for a couple of months. We finally figured it out and fixed the problem, and ever since then I wake up every morning with gratitude that my child is not in excruciating pain anymore. That whole process made me realize that I can handle pretty much anything life throws at me….except when my child is suffering and there’s absolutely nothing I can do about it.

Thanksgiving is that time of the year that we remind ourselves what we are thankful for. I know there is much more to Thanksgiving than that, but that’s the part I’m going to focus on now. It’s easy to get caught up in life and forget what truly matters, so sometimes we need reminders. But that also doesn’t mean that we can’t feel sorry for ourselves at the same time. I posted something on Facebook yesterday about how you can be sad and grateful at the same time, just like you can be full and still eat pie. It was supposed to be a silly Thanksgiving post, but I think it’s important to note that you CAN be sad and pissed off and miserable and fucking hate life, but also be grateful at the same time. That’s where I am.

After Keegan‘s medical crap last year, I remember telling myself that maybe if I woke up every single day consciously grateful that Keegan was healthy and happy, he would never have to suffer again. You know that feeling when you get sick or hurt and you wish to God that you would have appreciated every moment that you felt good? I did that. Every time Keegan would drive me nuts with his incessant happy stimming at 3:00 am I would say to myself, ‘at least he’s not screaming and crying in pain anymore’. And I hoped that would be enough. I hoped that if I was grateful enough, I would be rewarded with never having to watch him suffer again.

Most of you already know that my 12 year old son, Keegan, is very severe on the autism spectrum, nonverbal, and everything that comes along with that. I always tell people that you wouldn’t understand unless you lived with severe autism. But I’m finding more often than not that I should be saying you wouldn’t understand unless you lived with Keegan. Every autistic is different, just like every person on the planet is different. For instance, I know some kids, both autistic and neurotypical, have zero problems swallowing pills or actually like the taste of liquid medicine. Unfortunately, my child not only can’t swallow pills and hates liquid medicine, but literally requires an entire football team to hold him down and pry his mouth open to try to get it in him, and even that process is very likely unsuccessful.

My husband decided to take a two-week vacation out of the country with some friends over Thanksgiving. I told him I would prefer he not go during the holiday week, since support can be limited, but here we are. (Read my previous blogs if you’re wondering why being alone with Keegan for long periods of time is a challenge). I figured I would be fine though because Keegan had a few days of camp, plus the babysitter was going to be available.

Well, here’s a recap of the week so far…..

Sunday night, Keegan only slept from 11:00pm-3:00am. I decided not to nap since I figured he would sleep the following night to make up for it. Well, he didn’t.

When Keegan came home from camp Monday, he was acting sick and went upstairs at 7:00pm and crashed. If you know anything about Keegan, you know he’s never asleep before 11 PM. However, instead of sleeping all night, he decided to wake up at midnight and not go back to sleep. He had a fever so I figured he would at some point, but no. Because he was sick, I couldn’t take him to camp and I remembered that the babysitter was at her other job all day and night, so I knew I was fucked. I was averaging a total of four hours of sleep for a combined two nights, and I had to take care of a sick child all day after being awake since midnight. The only time Keegan was not crying was when we were driving around, and he could have his head sticking out the window. Do you know how hard it is to drive around aimlessly for miles when you are going on very little sleep? At one point I almost went through a red light. Thank God I caught myself in time. Then, during the next drive-around I realized that I had forgotten to put Keegan’s seat belt on. I knew right then that I couldn’t do it anymore, and I needed reinforcements. Sounds easy enough, right?

Jump ahead to Friday….Keegan still has a low-grade fever, he still hasn’t gone to camp, he’s still barely eating or drinking, his babysitter is MIA, I haven’t had a full shower in 3 days, I haven’t brushed my teeth in 2 days, I’m still averaging about 2 hours of sleep a night for 5 nights straight, and by some miracle, both Keegan and I are still alive.

Have I asked for help? Of course I have. Have I gotten it? Of course not…it’s Thanksgiving. People have lives and families and holiday plans. Have I told them that I’m desperate and not OK? Yes, but it doesn’t matter when it’s completely unavailable.

I haven’t been able to take Keegan to the doctor because I am by myself, and because it’s a holiday. However, even without those obstacles, a football team is required to carry him into the doctors office, and then continue to hold him down so they can look at his ears and mouth and nose etc. This said football team would then have to hold him down to get any kind of medicine inside of him. So if I can’t even find someone to come over to watch him while I take a quick shower, I highly doubt I can find a football team.

As I said before, I can handle pretty much anything, except when my child is not okay. And my child is currently not okay. Therefore, I am not okay. But what choice do I have? People always say to me, “I don’t know how you do it”. Well, I don’t have a choice. I would love to have a choice. Sometimes I would love to say, “you know…I don’t feel like being strong today.” But what choice do I truly have if Keegan needs me 100% and there’s nobody else to do it? I would love to be able to call in reinforcements, but unfortunately sometimes they do not exist.

Please don’t get me wrong….my grateful list is long and strong. But some days that list is hard to find. So if any of you guys are struggling with finding your list, maybe I can help.

If you are able to go to bed whenever you want and wake up whenever you want, (besides work obligations, of course), you are blessed.

If you have someone that you spent Thanksgiving with, plus had the ability to make some yummy food, you are beyond blessed.

If your children are happy and healthy, or can at least tell you what hurts, you are blessed.

If your child doesn’t require the entire Atlanta Falcons football team to assist you with taking them to the doctor, and then continuing to assist you with medication administration, you are blessed.

If you have any kind of emotional and/or physical support, you are very blessed.

And my personal favorite that I feel everybody takes for granted… If you are able to take a shower whenever you want, you are blessed!!!

By the way, I’m sure some of you are thinking, ‘If you can’t even shower, how do you have time to write all this?’ Well, since Keegan is sick, we are laying on the bed chillin in our pajamas (not sleeping yet). I can’t take a shower because I can’t take my eyes off of him. But right now I don’t have to….

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