I can remember the first time I saw someone with a disability. Here, I stood, a child that ran faster than most within the sunshine state and my mother introduced me to someone who had no arms. Talk about a WOW factor...this woman was supposed to: teach, help, and keep up with me?! Little did I know, this woman would teach me more than most-and they had all their appendages.
"I'm thirsty", I said. "Cups are in the cabinet to the right of the sink. I have water, milk, or orange juice", she said. Feeling as if she should be getting the drink, I had mixed emotions. I wanted to be mad that she couldn't just get it for me, but yet- she had no arms. Needless to say, I got the drink of my choice.
Later, I asked her to play a board game. All my sitters before had done so- why should she be any different? She refused. "Don't you like to draw and paint?", she asked. Of course I did. Why in the world would this woman ask if I liked to draw? She couldn't possibly do it with me. So, here I would be, drawing away until my mother came to get me. I could've never been so wrong.
"Great. Follow me. My studio is ready for us", she said jovially. Enthralled, I watched her as she painted and pushed me to do the same. I was so intrigued in how she used her feet to paint. In a way, she was way better - and I had my hands/fingers. If I hadn't seen it with my own eyes, I don't think I would've believed it.
Needless to say, by the time I left, this woman had done more within one day than anyone I knew. She was awesome! It was at my humble age of 7, I understood the word-diversity. I didn't even know that word existed until my college years. It wasn't until I had my son, that I actually had to teach the meaning of that word.
One day, I watched as Chris and some neighborhood girls played outside. Apparently, they found it funny to pretend as if they didn't have any arms. Chris, being gullible, joined in what he considered -fun. Of course, I was appalled. Instead of yelling belligerently, I waited until the opportune time came about to teach a lesson. Everyone wanted snacks, and Chris offered the cookies I had just bought. Leading him into the kitchen, I deliberately placed the cookies at a place he couldn't get to. When he went for the chair, I then told him, "You are not allowed to use your hands. Out in the front yard, you had none; therefore, you will obtain the cookies using other means."
His face told it all. He had no idea how to do so. After a few minutes of watching his frustration, I finally told him to stop. For him to think it was fun/funny to pretend he didn't have arms-was not so good. It's actually hard. I compared the way kids make fun of some of the things he does- to the way they made fun of having no arms. I asked him if he like that others made fun of him. Obviously, he said no. I then asked, "would you think someone with no arms would find what you and those girls did, amusing?" His response was a definite- NO.
His face showed he understood. Many people have disabilities. Some that are seen by the naked eye, and others that aren't. When I established the similarity within the difference, Chris didn't think having no arms was funny. Actually, he gained more respect for those he could see with a disability.
Unfortunately, having a disability, one that can be seen or not - has it's own difficulties. To have others question your ability-make fun of- or think it's weird/crazy, cannot be good for morale. It's also not good to make prejudice opinions.
Mother Theresa once said, "If you judge people you have no time to love them." No-one has ever been so right. My sitter, with no arms, showed me more than anyone with an appendage has. I've met people who cannot talk, but yet show love/compassion in many ways others only wish they could.
Not understanding diversity within disability can affect many things. People can be obstinate due to jealousy. My disability is worse than yours, attitude. People are made fun of because their disability is different then theirs. Ironically, there is a similarity within all things. There is also an "awe" factor" if you look hard enough.
When I see Chris doing things I never thought he would....or others accepting his "imperfections" - I'm elated. Unfortunately, I've witnessed too many not seeing the greatness in another. Not being tolerant of someone because of their differences. This is why I decided to write, "Learning About My Disability Through Others".
I met some people who are Schizophrenic. To some, their lifestyle or thoughts may be too much for someone to understand. I completely get it. Growing up with a mother who probably fit this mold, but had enough money to deny this diagnosis, it's a hard thing to comprehend. It's probably ten times harder to have a child with it. I wanted someone to take care of me, but couldn't - as a parent of one, you want to protect, but can't. It might even be harder to have the diagnosis and know it, but just can't deal. Regardless of which mold you fit, I found it necessary to bring it to other's attention. This is not something that's seen on the outside. Many don't even know they deal with this disability. When they do, they can't accept help.
One story that comes to mind is the "Soloist". A movie was based on a real life drama, in which a man with a promising career, failed due to a mental illness. Another man, non-related, felt that his story deserved attention. Things may not be great, but many hurdles have been overcome.
Doesn't every person, with a disability, deserve to be accepted- at least by one, if not many?
Don't others with a disability, deserve the same attention in diversity as others with a different culture?
Me- I THINK SO.
As a child begins to grow, we hope they can process information correctly and correlate it to improve how they function. Having a child with special needs means this is not always the case. The struggle is real. Sometimes, though, the struggling is just "making sense" of it all. In my son's case, it has been entertaining at times.
Lately, Chris has been on a camera kick. Everywhere we go, he has to look -point them out- and ask questions. I've made a list of the one's asked thus far.
1. Who watches through the camera?
2. How many are in the store?
3. How much do they cost?
4. Why do they have cameras?
5. Why can't I see my reflection in this one?
6. Can I get one -put it at the front door, and watch if someone steals something?
Asking these questions means he is trying to understand. This is awesome, however; try walking up to pay for your items and he begins to ask a cashier all those questions. There are definitely a few looks thrown my way- probably worried I'm having my son case the joint.
It also happened when I was at a car lot. As we walk in and he begins asking the owner, "how come you only have one camera" ..."do you record or just watch it". Inevitably, I have to say something, "My son has Autism." As if this is an explanation why my son is asking about the cameras. I suppose I'm hoping they hear "Autism" and don't question things further. I'm in the place for a specific reason, not to explain my son's way of feeling safe within a new environment. That in itself is a 5 page blog.
I've learned to deal with it and take the questions as they come, from him and other's as well. I've even decided that I will deliberately go to the same store, just so he can stop at the specific camera he knows. I now smile and wave at the "loss prevention" people knowing they were concerned when a child pointed at every camera in the ceiling thus far.
I have decided it's a way for Chris to understand and feel safe within his environment. It's something he has also chosen to learn. This fixation on cameras has led him to be the most knowledgeable child within the genre. He can prattle off Axis security cameras, cost, efficiency, and all kinds of intricate details.
Even though I have understood these things, for the first time, ever- his dad endured the pressures of Chris understanding the environment. Of course, he wasn't laughing when it happened, but the phone call to me about it, led to a good laugh afterwards.
Andy took Chris to a gentleman's house to look at a leaf blower. It's a fixer upper -just as he wanted. I think he's trying to get Chris to become a mechanic. Or at least see if he's interested in it. Anyway, it's a new place for Chris, picking up a new item, and not much daylight left. Being as Chris is Chris, he forgot to pee before leaving the house. He has no problem asking the man, whom he's never met, if he can use his restroom. The guy was apprehensive but understanding going outside in the freezing cold - just wouldn't do, he led Chris to the bathroom. After Chris drained his bladder, that's when it happened- Chris making sense of his environment led another to feel uncomfortable. He asked
1. Do you live here alone?
2. Do you have a dog?
3. Is there anyone else here now?
4. Whose house is this? Is it a house?
Here stands a father 6'4 ft. and his son - in the middle of nowhere-late in the evening-answering a craigslist ad, and the son asks those questions. Tell me, what would you think? Yep- the child is asking because his 6'4 ft. father is about to rob and kill you. I, of course, find it awesome Chris is attempting communication with a stranger, in an unknown place- trying to make sense of the environment. I'm also laughing, knowing just how awkward that situation was for the adults, meanwhile the 10 year old-my son, is just trying to understand the environment he is now in.
See, the man had three cars in the driveway and his living room used to be the garage. As Chris walked back to the bathroom, he saw most of the house, and wondered, "Why are there three cars-when he didn't notice anyone else in the house?" The dog was either because he smelled it but didn't notice one, or he has the correlation in his mind that a single older male, has a dog for a companion.
I think that we, as parents of our special ones, need to begin learning how our children make sense of the world. Instead of teaching them what we feel is suitable on "how to learn their environment", we need to learn how they perceive information - and then give them the tools to make sense of it.
My son shows me everyday -he is learning how to perceive people, places. and things. It shouldn't matter how he does it, but that he is. Unfortunately, we will always run into the issues where another's perception downplay's the triumph. Don't let it deter the happiness that your child is growing...and beginning to understand the world around them.
One of the worst fears as a parent we all probably share is how to keep our children safe from harm. We spend countless hours worrying about sickness, physical/metal/emotional harm, appointments, bullying, school, and much more befalling our children. We run around doing for our kids, cooking, cleaning, grocery shopping, and baths; sometimes we even forget to take time out for us. With the million and one items on our checklist of to do's and worrying, it is no wonder we forget to take time out to enjoy the little things.
We lived in Louisiana, in the deep, deep south. Copperheads reared themselves at every opportunity. At one time, the farmers' bulls escaped ensuring, everyone stayed safe and locked up in our homes until the sheriff let us know the coast was clear. I won't even get into the alligator farm the bank seized, leaving the alligators to fend for themselves. Needless to say, Louisiana was rich with culture and wildlife, but I worried non-stop about things that could harm my son.
I'll never forget the day Chris taught me something about the "little things" in life. This was also the day I realized just how much of a "parent" I had become. Our two-mile driveway was made from rock and stone with a natural pond that overflowed every time it rained. Outside, Chris was jumping in and out of puddles. I found such enjoyment watching him, considering not much amused my three year old. I followed him back and forth, with less than a foot spacing between us. After an hour of this, my nerves were shot. I felt like I said Chris, please don't do....or Chris, be careful so much so, if that was a song on the radio, it would have been played out.
At one point, he looked up at me with his big, brown eyes and said, "ma, drop". I squinted my eyes, as if that helps clarify what he is saying or helps me to hear better. He got the hint and again said, "ma drop", but this time pointed to the ground. "Oh, you mean jump. Is that what you are trying to say, you want mommy to jump?" He smiled ear to ear and shook his head yes. Here, is where I realized, I was officially a parent. In my mind, I'm saying to myself, no way. Who knows what's in that water. Knowing my luck, I would jump, cut my foot, bacteria would devour it, have a visit to the hospital, and be off my feet for a week. Yeah, nope. I bent down towards Chris, grabbed his little hands softly, and said, "I'm sorry, buddy, but mommy can't do it. I don't even want you to because I don't want you to get hurt. But, you are having so much fun and mommy wants you to be happy".
Chris looked down at the ground and his jump didn't have as much pep. I had never felt so bad as a parent until that day. I bent down again to ask him what was wrong. When Chris was upset, he would get distant or mad. This, was one of those times. As usual, my mind raced with thoughts, one stood out like a big, blinking neon sign. Just jump you fool! You used to jump off buildings into pools as a kid, but you can't jump barefoot in a puddle. Wham. I had just hit a brick wall of enlightenment. Here, my son wanted to play and all I could think was protecting him and myself from harm. He took it as I didn't want to play with him and I.....well, I was being a dumb parent.
We played even when the rain came. After baths, dinner, and bed, the house fell silent again. In the country, when things are silent, there is almost a loneliness that befalls like a blanket softly falling over you. The term, you can hear a pin drop, doesn't quite describe it. I was left to my thoughts and began rehashing the day in my mind. I realized that all my son wanted me to do was enter his world. He wanted to feel accepted and understood. All he needed, was for me to jump in those puddles to feel all those wonderful things. It was the smallest thing to do, compared to the everyday life battles and hurdles. I was happy that I entered Chris's world. I cringed then and still do, thinking that I almost didn't because of all the "possible harm".
I know how hard it is to forget to enjoy the little moments. We have so many little and big things on our minds: trying to have our children adjust to certain social norms, how can we teach our child this, or all the don't, no, wait, in a second, but that could hurt you; we are blinded by all those things and don't see it through their eyes. I cannot stress enough the importance of entering their world. No matter how crazy, off the beaten path, or stressful it may seem, later ...your child will be ever thankful for it. One day, your child will let you know that is the reason they have grown so much.
Chris, at nine years old, let me know today. Driving in the car, I asked him, "do you feel I understand you?". He shook his head yes. "O.K., next question. Do you feel accepted by me?" He shook his head yes, again. Those weren't the moments. It happened after we got home. Piling out of the car, he gives me a hug. He says, "mom, you know that when I say I hate you, I really don't. I mean.. I'm mad. It's usually because you tell me, no. I get it, though." I teared up then and even now, while writing this. Going into his world allowed him to blossom in mine.
Yes, we are parents. No, it is not good to be just a friend to your child. YES, it is imperative to enter their world first before pointing out all the things they need to change or think about. Could you explain what chocolate ice cream tastes like, never having it before? So, how can you explain to your child the in's and out's of the world, if you don't know how they view it?
One day, Chris and I were out on a drive. He noticed people standing on a corner of a busy intersection. They were holding signs saying, 'honk if you love Jesus'. We were stopped there for quite some time. As the light finally changed green, we passed by these 'preachers of the word'. Little did I notice, they were holding megaphones.
Apparently, Chris noticed because a few miles down the road he asks, "Mom, why were those people yelling into megaphones". Of course, I'm driving and have ten million things on my mind; I had no clue who "those people", he was referring to were. My normal phrase when I have absolutely no idea what he's talking about is: I'm sorry, Chris...what?! He understood the phrase and digressed further.
"You know the ones who were yelling to honk if you love Jesus." (Chris)
"Oh, OK, yes, what about them?" (Me)
In a million years, I would have never guess his next retort...
"Well, if they love Jesus...why are they yelling at everyone who passes by?!"
I told Chris to give me a moment to process what he just asked. When it comes to Chris, nothing is ever just one step and done. I have to put myself in his shoes before attempting to answer anything. His shoes are definitely a different fit.
After careful consideration, I spoke very carefully, "The people you saw with big megaphones, yelling at everyone, are very passionate about Jesus. Meaning they really love him and want others to feel the same way. Since it is a really big intersection, they used a megaphone to tell people to honk if they believe in Jesus. It's kind of like if we were in a store and you went to one side. Then, I walked to the complete other side. Would you be able to hear me if I said hi?
Chris pondered for a second and said, "nope, you have to use those intercoms they have".
Now, some of you are probably wondering what association did Chris make? I will break it down as if I'm a street dancer 'bustin a move'.
When people were speaking into the megaphone, it was loud to him. He thought they were yelling. Chris associates yelling with a negative connotation attached to it. Even a raise in voice octaves means a person isn't happy. It can also mean someone has done something immoral or wrong.
Chris also looked at what they were talking about...Jesus. For him, Jesus represents a good nature, understanding, and calm man who cares for others. Jesus and people yelling are contradictory terms within his mind.
Obviously, Chris was able to ask me about something he didn't understand. That got me thinking. How many times did Chris make an association in which the terms contradicted each other? I'm betting he had hundreds like this one battling in his brain. This is why it is imperative to figure out how our children's minds work. Just as much as it is important to have our children feel understood.
My reply to Chris could have gone awry. He was thinking that people who loved Jesus were yelling at others. By understanding his logic; I was able to explain they were people who loved Jesus and used a megaphone so others could hear. In a manner of speaking, it was shouting out FOR Jesus, not AT others.
Feeling understood is what aids us in having bonds with others. C'mon, let's face it! Our special children don't develop bonds naturally. Titles such as: mom/dad/sister/brother aren't enough to make them feel a part of something. Saying, "because mommy or daddy said so", is far from accepted by them. We can't just state the obvious and expect them to understand.
I like using the example my son says when he is upset to explain the brain mapping. He will say, "you are not my son". What he is trying to say is, "you are not my mom". The reality of what he means is, "I'm mad at you". An A-Typical 'normal' child probably would have yelled, "I hate you" or slammed a door. As we know, though, our special children, have a different way of saying the same thing.
When we dissect what our children are asking or why they continue an unacceptable behavior; we might just find one of the keys to help them understand themselves. Understanding is caring. Someone caring means the world to our special children.
The day before mother's day, I had to prepare my son for a change in our schedule. As I laid him down for bed, we discussed what mother's day is about. Explaining to him how mommy will be relaxing for most of the day, Chris seemed to be just fine with that. The next morning, I wake up and do my normal routine. Breakfast, pills, vitamins all laid out for Chris, however; dishes and laundry were looked at, but I decided to not clean them. As soon as my lil man awoke, he came out to the kitchen beaming from ear to ear. "I can't wait to try my new headphones at the library". It was at that moment, I knew mother's day was not understood by Chris last night.
"Remember, today is mom's day", I said in a questioning tone. "Today, is the day we honor, embrace, respect, and love mommy. It is also the day, where we do what mommy likes to do." After the several stomps, pouting, tantrums, asking why constantly, Chris finally asks, "so how long does mother's day last". Very enthusiastically I say, "till midnight, just like your birthday". Without blinking an eye, he says, "well, this sucks".
Later, he begins to ask more questions. One, in particular, had me thinking. He asked me if tomorrow was back to being 'kids day'. I suppose the question caught me off guard. I mean, obviously I do a lot for my children. Most of the time, they come first...especially him, but apparently I do so much, that he believes everyday is 'kids day'. In a round a bout way, this did make me slightly giddy. Chris was definitely an unwilling participant for "mother's day", even hated the fact I wanted to relax, however; for a child to think the next day begins their day, I must be doing something right.
Isn't that the paradox? We treat our children like princesses and princes and we expect to get the day off from them! The one day, we are celebrated for all we do, is the one day, our children truthfully cannot grasp that concept. Sure, they make cards or cute little artsy things we can never truthfully use, but they probably do so more of a "have to" attitude vs. "want to".
What was even more ironic to me, was even through my relaxation, I was still being mommy. There was no getting away from it. They still needed breakfast, lunch, dinner, and snacks. If I didn't pick out their clothes, who knows what they would have kept on, if anything at all. As I am outside relaxing with my tea in one hand, and the other pushing buttons to find that "perfect radio station to fit my mood"; I still managed to dig out the pool, fill it up, and get the kids prepared to have fun. Meanwhile, my fiance is working and at approximately 4:45p.m., a light bulb went off in my brain. Almost like a hand gave my brain a nudge...then a hard slap across the face, "wake up...time to make dinner". After bringing myself to huddle the kids inside and begin a quick feast (you know the one where anything that can go in an oven for 15 minutes and straight to a plate), I began hearing things call out to me. I'd hear, clean me...wash me...hello, over here, a piece of dirt. At 5 pm, I was starting the laundry, washing dishes, and sweeping the floor.
Maybe, just maybe, one day on this day in particular, I might actually be able to celebrate the whole day. Maybe, I might truly be sitting out on a beach, instead of having my feet in the kid's sandbox. Maybe, I might have a long island iced tea in my hand and not just sweet tea without using sugar (how that is possible, I don't know). Maybe, just maybe, Chris will truly understand how much I truly do for him. Maybe, he already has, he just says it in a really bad way!! Regardless, I know he knows I love him and show him everyday. Otherwise, the phrase, "that sucks" wouldn't have come out of his mouth. He had gotten 364 days of me doing for him. This is why, on the 365th day, he didn't know how to handle it. Truth be told, I didn't know how not to be a mommy, either.
A mother of a special need child and advocate for all!