Darwinism or Autism? The Quest for Survival

You know when you have a newborn baby and the only thing that gets you through the sleepless nights is knowing that one day very soon this torture will be nothing but a fleeting memory?

What if someone told you that the torturous sleep deprivation was never going to end. That this is how it was going to be for the rest of your life. Instead of a memory, it will be your daily reality. What if they also told you that you will sometimes be up in the middle of the night catering to him for 3 or 4 hours straight, unable to go back to sleep for fear of his safety.

What if that person also told you that your baby was going to grow up physically, but that was it. He was not going to grow cognitively or developmentally. You will have to take care of every little detail for that child like he is four weeks old, even when he is four years old, or even 40 years old.  And that even when your baby turns 18 and all the other 18 year olds are leaving for college, your baby will never leave the house, unless he is going to a residential facility or a personal care home.

If you had an option, would you still have that baby?

The description is a little dramatic, I know. But, it is my reality.

I recently read an article about a Princeton professor who suggested that severely disabled infants be killed in order to cut health care costs, and also for “moral reasons”. He feels that the “right to life” is based on that persons “capacity for intelligence and to hold life preferences.” He goes on to say that he doesn’t want his “health insurance premiums to be higher so that infants who experience zero quality of life can have expensive treatments.”

I think the initial thought process towards this professor, for most people who have a beating heart, is ‘blasphemy’. It was my first thought, anyway. I have a special needs child who falls into this category of “low capacity for intelligence” and “zero quality of life”. The thought of killing him as an infant is not even a thought that has ever crossed my mind.

A few days after I read this article I started contemplating the actual underlying meaning, and his actual thought process. It hit me during a play date. The depression usually hits hard during play dates because that’s when I REALLY see the difference between my son and every other child. Even those that are far younger than him. And, even those who are also autistic. My friends 1-year-old daughter shook her head ‘no’ in response to a question that her mother asked her. Wow! My 4, almost 5-year-old, has never shook his head no.

Another ‘slap in the face–your son is way too low functioning’ moment came this morning. My husband and I went on a tour of an autism school that sounded perfect for our son. After talking a little bit about our son and his abilities (or lack thereof), the director pretty much told us in so many words that our son was probably not appropriate for the school, based on his limited functioning and abilities. OK, so if he can’t even go to an autism school, what are his other options? If you won’t even take our $30,000, who will?

So this got me thinking about Charles Darwin, and his idea of “survival of the fittest”. It also got me thinking about this professor who feels we should just eliminate these ‘problem’ children from the beginning. All of a sudden, I actually understood where he was coming from.

As I couldn’t imagine my  life without my precious baby, I also can’t imagine how his life is going to be when he is at the age where he is required to take care of himself. My husband and I have sleepless nights (besides the fact that our son keeps us awake) worrying about his future. I know it’s not good to live in the future, but us special needs parents don’t have a choice. Not only are our days filled with worrying about the present, and sometimes just getting through the day is difficult enough, but we have to constantly think about what parameters have to be put into place to help him navigate his world in the future, or heaven forbid, live without us. And because our son has had little to no improvement, along with significant regression, over the past 2 years, we definitely have to consider this.

I think when people initially hear what this professor says, we think he is being selfish and shallow, only focusing on the strong and able. If I may play devils advocate, is it selfish to keep a baby based on our religious values or desires to have a baby, regardless of how difficult that child’s life will be? To not only torture the child through these impossible obstacles, but also torture the parents watching it? My son cries everyday, sometimes numerous times a day, and because of his limited communication, I usually cannot ease his pain. This is very difficult when it is someone you love more than anyone else in the world. I think that’s sort of what this professor is saying. The burden on the parents, children, hospitals and financial/insurance companies combined doesn’t have to be an issue if “it” (as he calls the child in question) is just eliminated from the beginning. However, very few people could fathom killing their precious gift from God, including myself.

The reason I blog about the depressing things in my autism life is not for others to feel sorry for me (but if you want to, you are more than welcome), but more for empathy. Everyone wants others to put themselves in their shoes at times so they understand their struggle, and where they are coming from. And like I always say, now you know why I’m such a bitch and never want to talk to you. (Just kidding…..sort of). I also disclose my innermost feelings to help with autism awareness. People know it must be hard, but they don’t really know why and how it’s hard. They think, ‘oh it’s got to be hard that he doesn’t talk, and can’t play with others, and has meltdowns,’ but there is so much more than that.

I get a little frustrated when some autism advocates say how important it is to appreciate who your child is first, instead of pushing therapies and worrying what society may think about them. As much as I 100% agree, I also have my child in therapy 8 hours a day so that he can learn to drink out of a cup, be potty trained at some point in the near future, draw a straight line, know how to take turns, be able to sit at a table for more than 2 seconds, know the difference between yes and no and how to shake your head accordingly, know how to open a door and open a bag of chips, etc, etc. This is not just about having him look normal to society, but more about him being able to hopefully live independently when he is older. And, to hope that when these professors pushing to kill newborns become more frequent, our weakest links (AKA, the loves of our lives) won’t be eliminated.

A Day in the Life……of an Autism Mom

As I sit inside the oxygen chamber with my son, holding his head up with one hand while he sleeps and holding the oxygen mask over his face with the other hand, I realize this is not what those “normal” parents are doing today, I’m sure of it.

This is just another day in the life of an autism mom!

It’s a lovely Saturday afternoon and I’m jealous that most families are at the park running around, or at a friends house enjoying a barbecue. I, however, am sitting for an hour and fifteen minutes in a very uncomfortable position inside a tiny tunnel, thinking about when my next free minute will be to schedule a chiropractor appointment. We are trying out another autism “treatment’–hyperbaric oxygen therapy (HBOT).  I was so glad Keegan fell asleep this time, since I had been unsuccessful getting the oxygen mask on him the 4 previous attempts. I mean, what autistic child with sensory issues would wear an oxygen mask for an hour? Hell, what neurotypical child would? As I hold the mask over his face, I am envisioning him waking up and saying “Hi, mommy”. Something I have never heard him say, and he’s almost 4.  I then think about being able to go on a play date like those “normal” moms with “normal” kids. Something I have not been able to successfully and/or joyfully do in the last year. The chamber is said to help increase speech and social skills……2 things Keegan is completely void of.

This hyperbaric oxygen chamber is just one of MANY treatments we have tried in the past year and a half.  We have tried everything from chiropractors, diets, supplements and injections, medications, psychiatrists, developmental pediatricians, occupational therapists, speech therapists, the iLS system (music listening system), aromatherapy, floor-time therapy, and Son-rise therapy, just to name a few things. Unfortunately, there is no “cure” for autism yet, but there sure are a lot of expensive theories and ideas that “might” help.

When people ask me what I do all day being primarily a stay at home mom, I can’t help but laugh. I have a “real” job that I work very little hours a month, mainly just to keep employed and sane. But the rest of my time is spent being that “warrior mom”. Most of it is just “typical” mom stuff that any mom would do. But everything is just sort of exaggerated.

First off, I probably didn’t get much sleep because Keegan was likely awake sometime between 3 and 6 AM, and awake for at least an hour and a half. Plus, it took him about 1 hour to even get to sleep initially that night. This is because, unfortunately, “40-80% of autistic children have sleep problems”. So, I start the day tired. After waking a cranky Keegan, I have to give him a somewhat special breakfast because of his “autism diet”, and spend a good amount of time measuring the many supplements that I put into his juice twice a day. Then, when he is in school (for only 3 hrs, mind you), I have to run around and do all the regular “mom” stuff, such as laundry, dishes, grocery shopping, cleaning….blah blah blah. . Also, I try to get an occasional workout and/or shower in there. I know some moms, except for single moms, have their hubbys to help out with some of these daily tasks, but my hubby can’t–he is helping in a different way. He is bringing home the proverbial bacon so I can fry it up in the proverbial pan……the autism pan (see numerous treatments listed above to get an idea of how much bacon we are talking about).  He works every day, including most weekends, sometimes 12-13 hour days. So, because I have no family locally, and because I don’t have the heart to bribe my friends to help out, I am left to do it all alone. And did I mention alone? This is all day, everyday. Sure, I’m with my chid, but remember…my child doesn’t speak or understand anything I say (well, I’m told he understands, but just can’t show that he does). It gets really old talking to myself all day.

Anyway, when I pick him up from school, we go straight to a therapy session or 2, then swing by the HBOT place for another treatment (BTW–did I mention he’s supposed to do 40 hyperbaric treatments, 1 hr each, as close together as possible!). Then, when we get home from all of that, its down time. So, you might think this means I get to relax at this time. Yes, to a certain degree. However, with a neurotypical child you can walk off and do your own thing, for the most part. Trust me when I tell you that you usually can’t with an autistic child, at least not with mine.  All the “normal” moms are like, “just tell him what not to do and go do your thing”. Lol! Remember, he doesn’t really understand a thing you say (or present as such) so you literally have to watch him as you would a small child. He has poor balance (thanks, autism), so there are always falls. He has this new oral issue (thanks again, autism) and EVERYTHING goes in his mouth. He is considered to be at the 18 month level in certain aspects and areas, so the watchful eye is always needed. He doesn’t understand safety concerns like one of those “normal” children (thanks once again, autism), so jumping face first off of the couch is completely normal for him. And since I’m usually not in the mood to go to the ER, I have to watch him every second. And, at dinner I have to cut up his food in small bites, and sometimes help him with the spoon (there’s autism blessing us again with poor motor skills).

And forget running errands with him. Target or the grocery store is usually the place he decides he wants something that I don’t have, and let’s me and the whole store know it. Yes, I know, all “normal” kids act up in Target too, but it’s a little different when you can’t at least try to reason with him. He doesn’t understand the “if-then” process (thanks one more time, autism), so saying “if you are good, then you will get a lollipop” does not work with an autistic child. At least not with mine.

All moms have it hard, autism ones or not. And, not all autistic children have these same problem areas. I’m just trying to share a few of the differences in my particular life as part of my autism awareness “campaign” (trust me–there are more). I know it sounds like I’m whining and complaining, and yeah, I kinda am. It’s hard. Really hard! But, I do know it could be harder. And, there are actually some positives with the autism process, which I hope to discuss later. People always say, “I don’t know how you do it.” Honestly, sometimes I’m not sure either, but I guess you do what you gotta do when there’s no other choice. Autism is a journey full of ups and downs. The one big ‘up’ is that my son is teaching me how to be a better mom and person.

Autismly Inspired

Its been a while since my last blog post so I thought I would try to break my ‘blog block’. I also just realized that I recently passed my 1 year blogiversary so ‘yay me’. And finally, with Autism Awareness Month this month, I’m going to be posting whether I have anything to say or not—–just wanting to spread awareness.

The only thing that has been running through my mind lately is this concept of “inspiration”.  I have been hearing how inspirational I am ever since my son was first diagnosed with autism, and I began opening up about my struggles. Friends from my past and present would send me private messages, or comment on my Facebook, telling me how strong I am and how inspirational I can be. At first, I thrived on these kind of comments and support. In fact, they probably kept me from becoming postal. I would usually cry reading them, and read them over and over again. Especially the ones about, “God doesn’t give you more than you can handle”. Or, “If anyone can do this, you can.” And my personal favorite, “God only gives special kids to special people.” At the time, these supportive words helped, and I felt like I needed that kind of reminder everyday. It was the fuel that kept me going.

Until one day I realized………………God does give you more than you can handle. And if God only gives autistic kids to special people, then I don’t want to be special. I want to be that non special person with a neurotypical child. What if I am not that strong person that everyone says I am? Everybody has so much faith in me, but I’m not sure I have the faith in myself anymore.

I remember that day of realization very clearly. It was after a hellacious night of no sleep, thanks to autism. My son was refusing to eat—ANYTHING (thanks again to autism). At that time, he also had another regression phase where he stopped talking almost completely, and would stim all day everyday, jumping up and down refusing to respond to anything. He would just stand at our large living room window and stare outside for hours. After 2 years of daily therapy, spending more than $200,000 out-of-pocket to try every “treatment” out there with little to no improvement, I wasn’t sure how much more a person could take. I began banging my head against the wall, literally. I felt so extremely helpless. Not suicidal, but definitely hopeless. After banging my head repeatedly on my bedroom wall, I collapsed on the floor, sobbing until I fell asleep.

When I woke up I began asking myself, ‘Is it inspirational to bang my head against a wall? Is it inspirational to feel utterly defeated, and to wish I didn’t have to be an autism mom? Is it inspirational to wish I had any other life than the life that I had been given? If God doesn’t give you  more than you can handle, then why is he allowing these impossible obstacles that make you hurt so much you want to crawl in a hole forever and hide from the world?’

The word ‘inspirational’ to me is that woman who’s son is severely disabled from a tree falling on his head here in Georgia. That woman amazes me. She is so freakin positive, and is always helping out others. There’s a reason she has more than 1 million likes on her FB page. And then there is that guy on Dancing With The Stars that lost both his arm and his leg. The guy only has one arm and one leg and he is dancing!! WHAT!!!!!! Now THAT shit is inspirational. He was fighting for our country, got blown up, and has a smile that could light up an entire room. AND HE’S DANCING.

And then there’s me……….People are telling me I’m inspirational, why? Because I haven’t killed myself yet? Because if they were in the same situation they couldn’t handle it? Well, if you told me 3 years ago what my next 3 years were actually going to entail, and that I was still going to be alive and able to talk about it, I would probably call myself inspirational too. I would have never guessed that I could be this strong.

I guess I can classify myself into that ‘inspirational’ category because I was given a situation that most people don’t want, expect, or prepare for, and I make the best of it. (Try to on most days, anyway). Sometimes inspiration simply means accepting that you cannot control much of what happens around you, even when you are scared. I still have those days that I want to crawl in a hole and never come out, but I do come out, because what is the alternative? We always have choices, but the choice to give up on life, my son, or myself is not an option for me. And that, I guess, is what makes me inspirational after all.