Thursday, May 25, 2017
I can't think of any better life motto for Christian than this. Christian can't be like the rest of the world even if he tries. Everywhere Christian goes, he stands out. He is different. That is just a fact. No need to dance around it. He is marching to the beat of his own drum in life.
And I couldn't be happier about it.
Christian and others like him are changing the dialogue about disability and life BECAUSE they are different and because they are not like everyone else.
What's so great about being just like everyone else anyways? And what is so wrong with not being like everyone else? Who even gets to decide where the range of "normal" looks like?
I heard a line in an episode of Supernatural once (years ago, before kids, when I actually got to watch TV sometimes). Dean Winchester said "Most people live and die without ever moving more than the dirt it takes to bury them." That line shook me. I wanted to make sure that I was never one of those people. I also hope the same for my children.
The social norm is to be the same as everyone else, fit in, don't make waves, fall in line; and that is a great way to never make any meaningful change in the world.
Mahatma Gandhi once said that we must be the change we wish to see in the world. That requires us to do something differently than everyone else! That requires us to BE different.
While society tells us to conform and be like everyone else, I think the real answer is to stand out, stand up, and be different!
Christian has no choice in some ways but to be different, and I hope to raise him to know that there isn't anything wrong with that! Chandler, too! I want my boys to embrace who they are and love themselves regardless of whether society thinks they are good enough or not. I don't want my kids applying societal standards to themselves, because when we do that, we will always come up short. I don't want my children feeling obligated to measure up to some standard made up by who knows that tells them that they have to be someone else because who they are isn't good enough.
We are "imperfect" people. We have cellulite, scars, frizzy hair, we are too thick, too thin, not tall enough, too tall, our nose is too big, our lips are too small. We will never look like Kim Kardashian, at least not without a lot plastic surgery. Here's a tip for you, Kim Kardashian wouldn't look like Kim Kardashian without lots of plastic surgery, either.
It's freeing to embrace who we are and love ourselves. It's freeing to know that we don't have to measure up to some random and arbitrary standard that...who created?!?! It's really meaningless to constantly try to measure up to that false standard anyways when you really think about it. It's a never ending tail chase. It sends us into a constant chase to attain that "perfection" that isn't really attainable to begin with. It's always changing so even when we reach one goal, we end up missing that moving target and have to move on to the next one just to rinse and repeat.
Embracing who we are doesn't mean that we don't see our faults and learn, grow, and change to become a better person. I think it means that we love ourselves where we are, don't beat ourselves up, show ourselves grace, and think we are worth investing the time and effort it takes to become a better person. I think it means that we don't try so hard to fit in, but that we appreciate the unique things about ourselves that make us different. I think it means embracing who we are and focusing on who we are created to be rather than who someone else tells us to be.
There is so much beauty to be seen in the world that doesn't fit inside a neat little box. Beauty isn't some certain, well defined, particular set of rules. Beauty can be found in the most imperfect of people, in the things that the world does not define as beautiful, and in the most unexpected places. All we have to do is look.
I know without a doubt that when I look at Christian and Chandler, I see beauty beyond what others might expect or understand. I don't want to be like the rest of the world. I don't want my kids to be like the rest of the world. That seems boring. Who wants to be average? Mediocre? I want my kids to reach for the stars. I want them to dream so big that who society says they should be can't hold them down.
I am raising world changers, not world conformers, and in that, I want them to know beyond a shadow of a doubt that their differences and the things that the world might consider as "strange" or "weird" or "wrong" are in fact, not strange, or weird, or wrong. Those attributes might be the exact tools they have been equippied with to help them change the world!
Thursday, May 18, 2017
When someone doesn't have personal experience with sensory issues, when neither them nor someone they are intimately antiquated with have sensory issues, I can only imagine what that looks like from the outside looking in.
A few things that I often wonder if people see when they see my kids struggling with sensory issues include
- "What a brat!"
- "If that was my kid I would.....X, Y, Z."
- "Why doesn't she just spank that kid and make him stop acting like that."
- "If she would just X, Y, Z, then her kid wouldn't have these issues."
That's not an exhaustive list.
In my on going effort to make the world more knowledgeable about disabilities and to promote the acceptance and integration of people with disabilities fully and wholly into our society, I want to talk about what sensory issues really are, and what they really mean to the people who have them and the people who love people who have them. I hope this post serves to create some understanding and bust some myths. In not way to I intend this post to cover every area of sensory issues or apply to every person with sensory issues. I am fully aware that this may not apply at all to some folks who have sensory issues. This is simply one family's view of what it looks like for them.
Sensory issues can present in so many different ways because we are each so unique as individuals. You might be familiar with the term sensory processing disorder (SPD), which is a common diagnosis for people with sensory issues. These issues happen because the brain has trouble organizing information from the senses. People with sensory processing issues can be oversensitive to light, sounds, textures, flavors, smells, and other sensory input. (Thanks, Google.) Christian has what is known as "sensory defensiveness," which is a step down from SPD. He doesn't have full SPD, but does show sensitivity and defensiveness to certain stimuli.
A few weeks ago, my dad came over to patch a hole in our wall. We had a hole about the size of a fist in the dry wall in our hallway, courtesy of Mr. Chandler and a light saber toy. So, my dad came over to patch it for us. Part of that process included sanding some putty on the wall after it dried. That resulted in a fine dust on the floor. My dad swept the dust up and all was well.
A few days later, I heard Christian calling for me and found him in the hallway, next to the patched drywall, with his arm stretched straight out away from his body. He had found a tiny amount of that drywall dust lying on the edge of our return vent. My dad and I had both missed it in cleaning up. (In our defense, there is no light in that hallway, lol!)
I looked at Christian's hand because it was jutted out towards me, and I saw some white powder on his finger tips. No big deal, I could just wipe it off right? Not really for Christian. I took him sort of my the wrist since his hand had the dust on it, and was attempting to lead him to the kitchen to wipe his hand when he said this to me, "Mommy, I'm scared."
Christians speech, while amazing compared to where it was a few years ago, is still more limited than a typical six-year-old's speech. So, his being able to verbalize this to me was the first time that he had used words to describe to me how he felt when he was in an uncomfortable sensory situation. I mean, I knew that he didn't like it. He told me in other ways. He would cry or scream when I tried to sit him in grass when he was younger. We went to the beach several years ago and Christian literally refused to put his feet down on the sand. When we tried to stand him on the beach, he held his feet up as high as he could get them and climbed me in fear of his feet touching the sand.
I knew that he didn't like certain sensory situations. I knew of several things specifically that he didn't like, but, he had never used actual words to tell me how he was feeling.
I crouched down to him and began wiping the dust off his fingers with my hand and telling him that he didn't have to be scared. I always try to have a "no big deal" attitude towards those specific things that I know set Christian off. The whole situation was resolved quickly when Christian was away from the dust and I had wiped his fingers, but the words he said to me never left me.
He was scared. Granted, he was scared of something completely harmless and that I would never even think to be scared of, but he was scared. Christian doesn't understand that there isn't anything about sand or grass to be scared of. If he did, he wouldn't be scared of it.
You know how children go through that phase of thinking there is a monster under their bed and there is no convincing them differently for a while? So you take them by the hand and help them look under their bed every night until they are certain the monster isn't there. It's the same with this. When Christian is scared of something, having a hard time with a certain sensory issue, there is no convincing him that it's safe in that moment.
His sensory issues resolve over usually long periods of time with slow, consistent, repetitive, and gentle exposure. It can literally take years to show him that a texture or item is safe. You can't simply set him in the sand and say "See! It's safe!" and expect him to be okay with it. You have to start with a tiny amount in the palm of your hand or in a bowl for example, allowing him to touch it ever so lightly with a single finger tip for just a few seconds. Then you do that twelve more times. Then you encourage him to touch it with two fingers, then three, and you do that twelve more times. Then you encourage him to touch it for five seconds, then ten, and do that twelve more times. Eventually, you start talking with him about the idea of lying the sand in the palm of his hand. You keep on practicing until he agrees to the idea of the sand in his palm, allowing him to dump it out when he needs to. Then you work your way up to five seconds, ten seconds, twenty seconds. Eventually, he might be comfortable sticking a finger into the sand, and the pattern repeats. You continue to move towards touching with the foot and practicing standing on it for several seconds and building a tolerance to that. If at any time Christian has a negative experience with the sand, say for example I decide to just force him into the sand before he is ready and it scares him, we start back at square one, and maybe even further back than he was before we started and the entire process has to start over. Forcing a child to interact with things that they struggle with sensory wise in forceful or aggressive manners simply doesn't work. It literally creates trauma for them and reinforces to them that their fear of that sand was justified. So, you can see why something so simple could take months, and you might even have a better idea of why it is taking years to get Christian ready and willing to eat foods.
Here's an example for you. Imagine something that you are deathly afraid of. I'll use myself as an example. I am terrified of bugs and spiders. It doesn't matter the type. I don't even like ladybugs and moths. Yes, I am aware they are harmless. I don't care. I don't like them. Continue telling me how harmless they are and let's see how much I care. Hint: I won't! :D :D :D
So, imagine this thing you are so scared of, and imagine that someone forces you into a room full of it, locks the door, and tells you "Stop being a baby. It won't hurt you." I imagine myself in a room full of every kind of bug imaginable, spiders, roaches, those ugly rhinoceros beetles, wasps, caterpillars, every creepy crawly thing you can think of, all landing on me, buzzing past my head, some biting me maybe. **BLECK** I feel like saying "I would die" is not overly dramatic. Would that ever work to cure my fear of bugs? No. Absolutely not. In fact, it would probably traumatize me and make me that much more afraid of bugs. That's how I imagine it would feel to Christian if I tried to force him to stand in that sand barefooted or run his fingers through it. It is terrifying to him. It doesn't matter that I know it's not harmful to him. It doesn't matter that it's not actually harmful to him. What matters is that it DOES scare him, that he legitimately feels unsafe when he encounters those things that he struggles with sensory wise, and the most important thing I can do for him is validate his feelings and be gentle and consistent when he does have to encounter those uncomfortable sensory situations.
Sensory issues are not just kids being misbehaved. They aren't just kids who need a good, swift pop on the rear. They also aren't parents who just need to make their kids suck it up and deal with it or be more strick. When it comes to sensory issues, it simply doesn't work that way. If it did, I promise you, I would much rather just make Christian deal with it and be over it than spend months or years building his tolerance to sand and grass and paint and dry beans and cooked noodles. So, for someone on the outside looking in who doesn't understand, consider this. If there was a simply way to rid Christian of his sensory issues and prevent his struggling, don't you think I would do it?
I hope this helps shed some light on sensory issues from a mom's perspective. I hope this helps some folks understand a little more what it's like to be Christian and deal with some of the things he deals with. He is stronger than he looks and braver than he seems. Don't underestimate him! He may not be able to touch sand without fear, but I hope that won't be something you use to make a judgment of his character. I hope you will look at him and see all the things he can do.