Tag: mental instability

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. 


The Deadly Side of Autism

I’m sure you all have heard the recent top stories about parents who attempted to, or successfully, kill their autistic child.  The big one this week is about a mom who threw her six-year-old autistic son off of a bridge into the freezing cold water. I’m hearing people respond to such stories with disbelief and disgust, as can only be expected. But I keep hearing one specific question that I might be able to help with…….”How could anyone do that?”

I will tell you how.

Before I begin my depressing discussion of the life that is autism, I want to be very clear that I do not agree with or condone harming any child, autistic or  not. I also have never had a feeling or urge myself to harm my child. EVER! These ladies who have killed, or attempted to kill their child,  will get what they deserve. And I hope it’s not pleasant!

However, if you really look at why things like this happen, you might not be so shocked when you hear these stories.

We’ll start with the woman who attempted to kill herself and her 15-year-old autistic daughter by carbon monoxide poisoning earlier this year. I don’t know all of the details of this case, and I have never met them. However, from what I heard, this teenager was very aggressive and violent. A large percentage of autistic children possess this unfortunate behavior. This aggression can include, but not limited to, hitting, punching, scratching, biting, and kicking either themselves or their parents or both. Imagine that all the while you are getting beaten up by your own flesh and blood, you have to do the basics to take care of the autistic child as well.  This usually includes necessities that ‘normal’ families don’t have to do with teenagers, such as making their food, sometimes feeding them, bathing them, brushing their teeth, dressing them, holding onto their arm while they are crossing a street, helping them with basically all daily living skills, because nobody else is there to do it.

I know most of you are thinking ‘the parent needs to stop allowing the aggressive behavior to happen.’ All I can tell you is to do more research on autism because that is SO much easier said than done. Behavior problems can get better with intensive therapy, but is not always the solution. Which brings me to the other unfortunate dilemma in the autism battle……affording the treatments. Most insurances do not cover autism services (they are working on Ava’s Law here in Georgia).  And, if you make decent money you are not eligible for any services such as Medicaid, waivers, disability, etc. So, most treatments for extreme behaviors are out-of-pocket, and not a possibility for some. And to add to the frustration is the actual services out there. An excellent therapist, wiling and eager to work with an aggressive child, is few and far between.

I was talking to someone recently about the limited services for autistic children with behavior problems and they said, “Why can’t they just go to an inpatient treatment center or group home?” Legitimate question, but these types of facilities pretty much do not exist. There are a few inpatient hospitals that have specialties with autism, but they are VERY limited, and definitely not cheap. (I think the only one in the Atlanta area is about $600.00/day).  There are also group homes, but most are only occupied by adults, and are also a 100% out-of-pocket expense.

Now, still on the topic of aggressive behavior……..I’m not sure if this girl in particular possessed any self-harming behaviors, but hurting themselves is very common with autistic children as well. Imagine watching your child beat their head violently against the floor, causing bumps, bruises, cuts, abrasions, sometimes life threatening injuries. And there’s absolutely nothing you can do about it. I heard a therapist tell an autism parent once that the only thing they can do when this happens is to provide a soft surface to lessen the blow. Also, the other day I saw a picture of an autistic child who would scratch at his nose violently during his outbursts. He barely had half of a nose still left on his little face, and it might be completely gone by now. There really are no “solutions” for many problems in the autism world, even if you can afford it.

OK, so I’m still not done painting the picture that is autism. Now for the everyday battles…………

The look on your childs face when they can’t verbalize what it is they actually want/need can be heart wrenching when occurring on a daily basis, sometimes many times throughout the day……..The fact that approximately 80% of parents with an autistic child get divorced should tell you the amount of stress it causes the family in general…..The fact that some children on the spectrum hate to be touched at all can be heartbreaking, especially for a mother, since it is our ‘job’ to be the nurturer…..The fact that our support system slowly dwindles down for numerous reasons……Knowing that your child will be the target for bullies, and will not have the ‘street smarts’ to defend themselves…..And the biggest one, in my opinion—-worrying every day all day about who is going to take care of our child when we are gone. Parents of ‘normal’ kids only need to worry if their daughter will turn out to be a stripper, or their son end up a drug addict. All we want is for our autistic child to be potty-trained by age 18, or to be able to feed themselves with a spoon, or be able to drive a car. And if they can’t do these things on their own, who will be there to help them?

The list actually goes on and on, but I think you get the idea as to the everyday worries, stressors, and limitations that are involved in a typical autism family. Do these challenges make it OK for a parent to kill their child? Of course not. However, I do think the constant flow of one problem piling onto the next problem (the snowball effect) can really break a person down, and may trigger any instability that may already be present otherwise. I read that the woman who threw her son over the bridge had recently found out that her husband was diagnosed with multiple sclerosis, causing him to be unable to work, and unable to continue providing for the family. I believe they had recently separated as well. Therefore, it is not just the direct stress of autism, but the addition of everyday struggles everyone faces that exacerbates the problem.

There is only so much a human being can take. It is sad that some parents get to the point where they feel that killing their child and/or themselves is the only answer. Everyone you meet is fighting some sort of battle–some more extreme than others. I personally am surprised I don’t hear of these terrible incidents more often, especially in the autism community. This journey is hard, so please remember to take care of yourself.  And for those who aren’t directly affected by autism, but know someone who is, keep an eye out for any odd behavior and ask them if they need anything. And please reach out because I’m almost positive they won’t.  As you can see, they have enough on their plate.