Quarantining Autism

So, 2020……what a year so far, huh? It’s kind of ironic that the book I just published is called #BestYearEver, since I would have to classify this year as probably my worst year ever.

I was prompted to finally finish this blog post when I found out a long-time friend of mine died by suicide. I hadn’t seen him for a while, but I worked with him for over seventeen years. I remember the last time I saw him… I was in my usual hurry, rushing out the door at work. I gave him a brief hug, and apologized that I couldn’t stay and chat.

Now I wish I would have. 

This news also triggered some things that I have been pondering about lately. In these challenging times, and also working in the mental health field, we urge people to reach out for help…… “If you are thinking of suicide, talk to somebody.”

But what exactly happens when we reach out? I guess it’s different for everybody, but I have found that reaching out has not been extremely helpful for me lately. I’ve never been one to ask for help, or to be vulnerable and admit that I’m actually not doing well. However, I think I have used the phrase “I’m not OK” more times in the last three months than I have in my lifetime. But so far, the main thing I have received in return, after sharing my innermost current struggles is, “I know you are having a hard time right now, but I feel like a punching bag.“ Or my new favorite… after people tell me how they are always there for me and to just ask if I need something, but when I ask, I get the “Oh sorry, I can’t today, I’m taking my car into the shop,” or “Sorry, I can any other time, just not right now.“ For the first time, I actually understand why it is so hard to reach out.

What should we expect when we just want a compassionate or sympathetic ear? I guess we want someone to fix it for us, and truth be told, nobody can. I think that’s the depressing part…to know you are in this particular struggle alone. But do me a favor, please don’t tell someone that you are there for them if it’s conditional, or if you actually don’t have the time to help. I’m sure this person wasn’t lying and was probably taking their car into the shop, but it makes it worse when we think you might be there those few and far between times we actually reach out. 

I recently realized that since this quarantine started it’s craziness, I’ve been feeling exactly like I did the first few years of my son’s autism diagnosis. With all of these Covid-related life changes, I started to feel very alone, sad, misunderstood, hopeless, helpless, and depressed, just to name a few feelings. I’ve been struggling because I know my son is struggling, and that makes me struggle more. I’ve been trying to turn to all of my self-care techniques and coping skills, but most of them don’t exist anymore, or are not available right now, thanks to this fucking virus. I have the “tools”, but the inability to use those tools is extremely difficult. I just want to relax and sip my coffee while I watch General Hospital, but my daily GH is no longer on, thanks to this damn virus. 

I know for a fact that about 90% of my problems would completely dissipate if Keegan was able to go to summer camp. Keegan has gone to this particular camp for the last seven years, and he loves it. And I love it because he’s happy, and I trust them. That group of girls have been my lifeline for seven years, and that is no exaggeration. I don’t have any family in this area, so they are the closest thing to family that Keegan has. Those girls would pick up Keegan from school if I needed, or take him out on a hike so I could catch a flight, or let me pick him up late if I needed to run some extra errands. I used to “joke“ and say that I would likely be suicidal if it wasn’t for that group. I know nothing of what I just said is a joke, since suicide is not something to joke about, but I was actually serious. I never took those girls for granted, and I knew I would never be able to survive without them. 

And I was right, because I am barely hanging on. 

I just found out last week that they will not be doing any form of summer camp or home sessions, and it literally knocked the wind out of me. How am I going to be able to take a shower, or go to the grocery store, or just relax and watch Netflix? Why can’t I do these things, you ask? Well, because Keegan cannot be left alone for one split second, and my husband is working all day every day, and there’s no one else that can help. I can’t take him to the grocery store because I can’t hold his hand while I push the cart, and I can’t keep him occupied without him disrupting the whole store with his loud verbal stimming. Plus, the stores close too early now, because of this damn virus, so I can’t just wait for hubby to get home to go. Also, I can’t just give Keegan an iPad in order to get house chores done, because Keegan hates the iPad. I can’t just turn on the TV while I take a shower, because Keegan‘s new favorite thing to do is to try and stand on the handrail of his mini trampoline that sits in front of the TV. He also loves to take his scooter or skateboard and try to ride it down the stairs (see pictures for both below). And the other day I found him eating chipped paint off the wall, so you get the idea. I have to eyeball him every second of every waking moment. 

 

“Just hire a babysitter,” they said. “It’ll be easy,“ they said. The sad thing is that we can afford some help, but finding people to help is the difficult part….or people that we trust….or people willing to get out and work when they should be quarantining. Without going into too much detail, not only because I don’t have details, but because I don’t feel like bawling my eyes out as I type right now…….I have a really bad feeling that one of the babysitters that we recently hired was hurting Keegan in some form or fashion. And because Keegan can’t verbalize anything, all he can do is look me in the eyes, tears streaming down his face, while his finger nails dig into my skin, with an intermittent hard as hell head bang, to try and tell me he doesn’t like her. I have no proof, or no evidence to suggest this girl was hurting my sweet boy (which is probably good, since I would likely be in jail), but the look on his face the last two times she dropped him off was enough to stop using her services. And if only Keegan could go to his summer camp, I wouldn’t have to worry about my child being abused.

Since that girl obviously didn’t work out, I hired someone else, and decided on a “manny”. Last Monday, I received a phone call while Keegan and his manny were at the park. I usually communicate via text with all the sitters, so when I saw the manny’s name on the caller ID, I knew it was bad. I could hear Keegan crying when I answered the phone, so I knew it wasn’t good, but I knew he was alive. After I said “Hello”, I heard the words that only nightmares are made of…..

“I have bad news, we just got into a bad car accident.”

 

 

The rest is a blur, but luckily Keegan‘s injuries were minimal, which meant his guardian angel was working overtime that day (above is a pic of the actual accident). Besides an injured foot/toe, which caused a limp for a day or two, he came out unscathed. But, once again, I wouldn’t have to worry about this kind of thing if he was able to go to his camp.

And now I don’t even know if Keegan will be able to go to school in the fall, so it looks like I might be continuing to try out new sitters for an indefinite period of time. And that isn’t fair for Keegan, so that hurts me. Keegan deserves to have his life back, and I hate that I can’t give it to him. He deserves to have his teachers and therapists cheering him on, and telling him every day how smart and wonderful he is. I’m so stressed out that I can’t give him the positive attention and support he deserves. Plus, he needs his friends….he hasn’t been around one person his age since this whole shit storm started, and he needs his social group. And again, I wouldn’t have to stress about any of this if he could just go to camp.  

I know I sound like I’m not even worried about Covid-19, or all of the serious issues in the world right now. I know I sound super selfish, only caring about how this whole ordeal has affected me and my everyday life. And for the most part, that’s true. I know my limits, and right now I am only surviving. I also know from both my job and personal experience that you have to be selfish in order to take care of your own mental health, especially if you have to take care of someone else, too. And right now, I don’t have an option. I wear my mask, I wash my hands often, and I try to be smart, but I’m also just trying to get through each day…..alive. 

Some of my friends have mentioned on social media that if you are silent about the issues in the world right now, specifically Black Lives Matter, that you don’t care, or are in denial. It’s not at all that I don’t care or don’t see you, it’s that I have to care more about me right now, and that’s hard enough. Girl, I would love to go out there and rally with you, but I’m literally stuck at home with no help whatsoever, and trying to find that second in the day that I can go to the bathroom without worrying if my son is eating paint. 


My Autism Hero

It’s been a long time since you’ve heard anything from me, I know. Look at that as a good thing, since I tend to write when I’m stressed or depressed, usually something related to autism. So if I’m off the blogging radar for a while, assume I’m having the time of my life. Or at least hanging in there as best I can. This blog in particular is not really a stress release, or to celebrate anything amazing, but I’m hoping it is a bit more positive than my last 23 blogs. Maybe.

This last weekend was the first time that my husband and I had a night to ourselves, as a couple, for over a year. Well, most of the evening was spent at a birthday party for an 80 year old friend, but after that we got a hotel room, since the sitter was able to stay with Keegan for the weekend. We don’t do this often, and for many reasons. The main reason is because the sitters definitely don’t work for free, which is more than understandable. So, any overnight fee is quite expensive, especially for a special needs kid. Also, there is a slight chance that the sitter will be up for half of the night with Keegan, so I always feel like we need to pay top dollar just so they can take Monday off of work to catch up on their sleep.

We didn’t really know what to do with ourselves last weekend, my husband and I. Don’t worry, we didn’t get wasted, since it was a low-key birthday party. I guess we could have, but it probably wouldn’t have been very prudent. So we honestly just went to the hotel to sleep, which is something we never get, thanks to autism. That was the first night in a REALLY long time that I got at least 8 hours of sleep. I think it was closer to nine hours, which is unheard of in our household. But, Jesus, I needed it.

Most of the night was spent talking a lot about Keegan at the party, since so many people wanted us to bring him, and kept asking where he was. We always get asked this everywhere we go, and it drives me crazy. I totally get why people ask, but there’s not an easy way to say why we don’t bring our severely autistic nine-year-old with us to parties. One response we might give is, “Well, if you don’t want all of your breakable household items turned into a million little pieces, than you should be happy we left him at home.” Or, “He would not have been able to handle the noise level,” which is true in most environments. Or, “He wouldn’t be able to sit at the table and eat with everyone”, which is more than true in all instances. Then there’s always that one same question that comes out of their mouths next………”How old is he?”

I understand that the reason they ask this question is because my responses make Keegan sound like a pain-in-the-ass, unruly two year old. They may know he’s autistic, but they are comparing him to Dr. Shaun Murphy on The Good Doctor, or their neighbor’s seven year old autistic daughter that always comes over and sits nicely for their dinner parties. Keegan isn’t like that. At all! His little body doesn’t allow it, for lack of a better overall explanation.

I will give you two real time examples, which both happened today. First, I was talking to Keegan’s occupational therapist in the waiting room, and in less than 10 seconds, Keegan found a dust bunny next to the couch and shoved it in his mouth. It was a good sized chunk of dust, too, which I had to pull in strings out of his mouth. Then, tonight I was trying to figure out Keegan’s toy accordion, and in less than 20 seconds, he opened the tub of sensory water beads. I not only forgot that he had that bin of beads, but I didn’t think he could open the container. I’m not quite sure how many balls he got in his mouth and swallowed, but I’m sure in that 20 seconds it was at least three or four.

All autistics are different, and I wish people could just understand that. I know it’s recommended to take autistics to outings and social gatherings, regardless of severity or age. And I agree with this. But, there’s just some times that I don’t want to chase him around everywhere. He can’t be left alone, or out of a parent/caretakers vision for more than two seconds, and that’s no exaggeration. My child is the sweetest and cutest child in the world. And believe it or not, most who know him would actually say the same, not just his biased mom. But his autism is hard. And when you want to relax and enjoy friends, and maybe drink some wine in-between, you simply can’t when you are with Keegan. There would probably be wine all over me, or you. And, I would have zero chance to catch up with anyone. And some days I don’t want to be an autism mom. I just want to be Karli.

But I digress……..

I know I said this blog post would be positive, and I’m getting there.

So, back to the party last weekend. A woman at our table was talking about her son winning his soccer game earlier in the day. Then another mom chimed in about her daughter going to college next year. I then looked over at the “kids table” and saw a group of about six kids, ranging in age from 5-10 years, playing silly games with each other, and themselves. These are all neurotypical kids I’m speaking of. Or in non-autism-world language, these are “normal” kids.

My husband was hearing and seeing the same thing, so I knew what was coming next. He then turned to me and said, “I wish Keegan could have joined us this weekend.” Then came the usual, “I wish Keegan was neurotypical, and we would be taking him to soccer practice, and excited about him going to college, too.”

But here’s where I had an epiphany of sorts. A crazy thought crossed my mind that I honestly don’t think I’ve had since my son’s diagnosis. I actually felt more sorry for these neurotypical moms than I did for myself. Then immediately after I had that thought, I questioned myself in my head what I meant by that, and why I thought that. Yes, I would love to have a neurotypical child. But, I realized in that moment how lucky I was that I had this little man in my house that was teaching me so much every single day, that was making me a better person every minute, and was also strengthening my marriage. This is not to say that a “normal” kid can’t do these things to parents, too. But, it’s totally different when it’s on the special needs scale. When you have a severely autistic child, you appreciate all the little things so much more. You pay it forward when you can. You reach out to others more, both for help and to help, because you understand how hard life is. You appreciate that life so much more, because you have a reason to live it. You get to know yourself so well, usually because you don’t have a choice, but still. You judge less, because you now know too well how it feels to be judged, which unfortunately happens too often with special needs parents.

I’m not saying that Keegan has made me perfect, but he has helped me love my perfectly imperfect self. I mean, how many people are lucky enough to have a little person teach them more about the world and others than they ever thought possible.

Keegan is my hero!