Tag: surviving autism

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!

 

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.