Christian Taylor Buchanan

Christian Taylor Buchanan

Thursday, July 20, 2017

A Perfect Life Won't Make You Happy

Life doesn't have to be perfect to be joyful.

Photo Credit: FireFly Photography in Murfreesboro, TN

That concept seems so simple, but when you really think about how it applies to our society, it's easy to see how we as a society really struggle to understand and apply it.

Our society is FULL of commercialization that tells the listener that they simply must have that newest, latest product, that they need to look like this model, that they need these clothes, this makeup, this body, this hair, this car. Then, they will be happy. They do this because it makes them money when we go purchase these things in an attempt to fill that void and make ourselves happy, right? What iPhone are model are we even on at this point? I can't keep up.

"Keeping up with the Jones" is a real thing. We envy other people and what they have. If only I had a house that nice, a family like that, then I'd be happy.

I have found myself even doing it in mom circles. I wish my children were as well behaved as hers. I wish my husband supported me this way like her husband does. I wish I could look that good while taking care of multiple children. Her life seems so perfect. I'd be happy if my life was more like hers.

We idolize those things, hold them up on a pedestal, and they become our goals to attain happiness. They become our gods.

But it's fleeting. Chasing happiness will always leave you chasing and coming up feeling unfulfilled. That's because while those things are nice and will probably provide some temporary feelings of happiness, that new car will get old, and then you will be right back to chasing again. That perfect partner will mess up, and then you'll be out looking for the next perfect partner again. Those perfect children will break your heart, and you will be left wondering what went wrong. That perfect body will age, and then you will be back to wishing you were someone else.

We think that if we could just make our lives perfect, we would finally be happy. But a perfect life isn't what creates happiness. A perfect life isn't really even possible.

I think one reason that people find my family so inspiring is the joy they see. They see this incredible joy mixed right smack dab in the middle of an imperfect situation, a child with complex medical needs, issues that take lots of work and that comes with lots of challenges and sometimes a lot pain.

I get it. I would've thought the same thing before Christian came along. I would've looked at someone like me and wondered how on earth they could be so happy. So, that's why I wanted to write this blog, to explain it a little bit to you guys. I hope that in sharing my heart, I can give a glimpse of the God we serve.

So, how can we be so happy and so full of joy despite such imperfect circumstances? Simple. Our joy isn't derived from our circumstances. Our joy, our strength, and our hope comes from God. Yes, we have so many simple moments of happiness that aren't "religious." When Christian and Chandler spend time playing together, the happiness in my heart overflows. When Christian tells a joke and giggles infectiously, I can't contain my smile. When either of my boys accomplish something, the pride swells in me. But it's because of the state of our hearts and the depth of the joy that God has given us that we are able to fully experience and enjoy these little moments for the gifts they truly are. "Every good and perfect gift comes from above, coming down from the Father of heavenly lights."

Long before Christian was ever born, God called him fearfully and wonderfully made. There are no exceptions in that verse that say "except for people born with disabilities." That means it certainly applies to Christian, and to you and me.

And while I don't understand why Christian was born with his disability, and while I would certainly take it from him if I could, I have peace knowing that I don't have to understand it. God says that His ways are not my ways and His thoughts are not my thoughts. I can believe that or not, but me personally, I choose to believe it. And so, I don't spend time racking my brain over a question that simply can't be answered.

I don't know why God didn't give Christian his eyes. I certainly believe that He could have done so had he chosen to. I don't know why we got a "No" from God when we prayed for Christian's physical healing. What I do know is that whatever purpose God has given to Christian for him to fulfill in his life, God has also equipped him to do it. Christian lacks nothing he needs to accomplish God's purposes for his life. God did not call Christian to some purpose and then forget to give him what he needs to complete it. Christian is whole as far as it pertains to his ability to fulfill his God given purpose and calling.

Personally, I believe that if God had his way, everyone would be born perfect and healthy. We pray the Lord's prayer that says "Your will be done on Earth as it is in Heaven," and we know that in Heaven, everyone is healed and whole. Yet, because we live in a fallen world, God doesn't always have his way. We have free will to usurp God's will and plans, and don't we do it so often? I do!

But knowing God and knowing His character, it only makes sense that whatever "deficits" we have, and we ALL have them, God is bigger. And in our weakness, God is stronger, because His grace is sufficient for us, and His power is made perfect in our weakness. I think that's something to boast about.

God takes those deficits and manifests His power and His glory in ways that we could never imagine or understand. In our humanly, limited scope, we might never grasp all that God is doing or working out for us, but we don't have to. We just need to trust that He is.

I have trusted God to work all things together for my good and he has done just that. I am able to share Christian with the world, and teach others about the God whose glory he reflects. God has allowed me to use my story as a living testimony of the truth and power of God. God has been able to use even me, someone as undeserving and imperfect as me, and a little boy who the world considers "not whole" for his mighty purposes.

When I was finally able to grasp all of this, how could I ever be sad or ashamed? How could I be upset about how God was working so powerfully in us and showing me just how much He loves me and my family.

The day God gave me Christian, He put his love for me on display, and then did it again when He gave me Chandler. It's easy to be joyful when my happiness comes from the One who gives true fulfillment and everlasting joy. It's easy to be happy when my eyes are on God and not on my circumstances. My circumstances may be difficult, but my God is good and He loves me with a love so powerful that He was willing to become human and die for me. That's powerful. So, I count it all joy!

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Thursday, July 13, 2017

Terrible Two's? I call this the "Suffering Sixes!"

We've all heard of the terrible two's, but what do you call it when a child turns six and discovers his own free will and independence? The suffering sixes!?!? haha!! Whatever it is, I think we are in it!

Christian had probably one of the worst karate classes he's ever had today. Whatever his sensei told him to do, he was determined to do the opposite. It took multiple times to redirect him to any task.. Even just simple tasks like "Close your hands into fists" became laborious as it took asking five, six, or seven times to get even a little cooperation.

Christian at karate today

There was very little karate accomplished today, but I hope something bigger might be taking place. Because of the difficult time Christian had today in karate, it gave his sensei and I both a platform to discuss these behavior issues with Christian. It gave us a really concrete concept to talk to Christian about, which he needs to be able to comprehend and expand his thoughts. I can pinpoint specific things he did at karate that are not exemplar behavior and explain how and why he needs to do better. We've been discussing it today, as did Mr. Taylor at the end of class today, and I think it's clicking for C.

The last few months have been a challenge behavior wise for Christian, but I think we are finally over the hump and starting to even out and figure our way along, despite the rough karate class today. I think Mr. Taylor is one person Christian hasn't bucked on too much just yet because he respects him, and I really believe today was just some final testing for Christian to try to figure out how hard and where he could push his limits. He's been testing and pushing me for months now, so Mr. Taylor has been spared so far.

I think it all started with a hard school year. Not only was it Christian's first year of school and extended stays away from Chandler and I several times each week, but some things went on that shouldn't have through no fault of the school, and unfortunately, Christian reacted with aggression. It wasn't his fault, and it's a total expected reaction in circumstances like that, but it left me worried nonetheless.

On top of that, the school year was a time of growth for C. He had lots of therapies and lots of new experiences, which gave him a good developmental boost! He began speaking even better, using larger words and more complex sentences. He finally started using pronouns correctly after years of saying them wrong in such a cute way.  (I'm happy and sad all at once over that one #MomLife.) Christian started learning that he can walk and explore independently without holding my hand. He already knew this and tried it a little, but it was really reinforced at school and he was shown exactly how to do it. This newfound freedom was exciting for Christian. His favorite phrase this school year has been "I want to do it all by myself, Mommy!"

Basically, he went from a pre-schooler to school aged kid. He is growing up, as much as it pains me to admit it.
Christian's first day of kindergarten last August.
Look how much he's grown! 

That new found independence mixed with the new aggression he learned in an attempt to protect himself from someone who wasn't being nice brought lots of power struggle between he and I.

Christian mastered the art of the "No" and was testing the waters to see exactly where his limits were. He would disobey until he was absolutely forced to do otherwise. He would get angry and lash out over not getting something he wanted right away. It was rough, and it also wasn't the expected or typical behavior that I had known from Christian.

 The thing that worried me the most was that Christian is so dependent on me to help him with things like safety, and he just decided that he no longer needed that help. When I would tell him to stop walking because he was getting close to an edge or something that could hurt him, he just continued walking and refused to listen. He didn't care that he was about to get hurt. Literally, getting hurt mattered less than asserting his independence and ability to make his own choices.

So, the last few months have been a challenge, to say the least. Christian has always been my calm one. He is the compliant child, or at least he was. He was always the sweet, sometimes quiet little boy who always had a smile on his face and a happy disposition, and suddenly I didn't know where that happy little boy went or who this screaming banshee that looked like my son was.

When I finally began to nail down the issues and figure out what was really going on, I was finally able to help. I decided to drop our nursing after months and months of having different people in and out of the home who Christian would get attached to just in time for them to move on to the next case. Christian needed consistency and we just weren't getting it, and while that is just how that industry works, it was doing harm to Christian. On top of that, Christian became suddenly scared of any new nurses that came into our home (I'm talking, fetal position in my lap until they left) and strangers in general. That was when I really honed in on what was going on and decided it was time to end nursing care.

I was nervous about ending it, but I can't say enough about what a load it has lifted. It's strange how having nursing care went from lifting a burden to creating one, but it did, and I was hesitant to give up the help that I desperately needed. It took me some time to figure out exactly how we were going to manage without some sort of respite care for Christian. I was honestly nervous. Christian requires a lot, and so does Chandler. Christian's tube feedings and care, along with his sighted guide safety needs can keep someone busy all day long. I wasn't sure I could do it all alone. I had also planned on starting to work soon, and that would be out the window without someone who could feed Christian. I hadn't planned on going without nurses, and I knew it would be challenging, but I knew deep down that it was time.

I made the leap of faith, well, the call of faith, and cancelled the nursing care anyways because I knew it was what was best for Christian. I noticed an almost immediate change in Christian for the better. Within just a week, he was more relaxed and the aggressive attitude started to calm down. He still wasn't listening better, but we have been able to work on that since the aggression is leaving. It's been...2 or 3 months now, and Christian hasn't questioned once why his nurses aren't here until just a few days ago actually. That tells me a lot about how he was feeling about it. He's had nurses for most of his life and went for 2 or 3 months without ever speaking about the fact that they were suddenly gone. I know he noticed the change, because he isn't stupid by a long shot. He used to wake up every morning and ask who was coming to be his nurse that day. He *knew* there were no nurses, and yet he never asked me why or where they were. That spoke so loudly to me.

Christian calmed down a ton, but the willfulness was still going strong, and he was just being so daring and using zero safety consciousness, which is so important for visually impaired people. (Think, walking carelessly off the steps because you don't care to take an extra few seconds to slow down and find them first.) I began to try different things to see what was going to help. At first I tried cracking down, and it just made him fight me that much harder.

I couldn't even begin to discuss everything I tried, because I was trying it all. I almost reached a point of feeling helpless, and tried calling around for some help. I was met with brick walls and 'No's." So, I kept persisting. Finally, the one thing that worked was more patience than I knew I had. The more Christian pushed my buttons, the more angry it was making me, and the more I was reacting with punishment. It just kept making things worse. I had to really start stepping outside of that anger and doing what I knew I needed to do.

Christian was trying to take control because he had felt out of control in his situation with school and nurses, and here I was trying to take that control away. He wasn't giving up without a fight, and rightfully so. He needed to know that his current situation wasn't going to get out of control. He needed me to listen to him and hear what he wasn't actually saying. He also needed more than to hear the aggravation and frustration in my voice directed towards him when he didn't do what I told him. He needed me to talk him through and explain to him why I needed him to do what I asked him to do, so that he could then CHOOSE to listen. He needed to have the freedom to choose to listen to me, not just be mindlessly forced into it. He also needed some stability and consistency, to know that he was not going to be put back into a situation like what existed while I wasn't around to protect him at school, which I think just comes with time.

So, Mr. Independent, I am happy to report, is doing better! The independent streak is still there and sometimes the aggression is still rearing it's head. He is still insistent on doing things his way and being stubborn about listening to adults.I can't say I blame him, because adults failed him and he is just trying to process it all. This school year taught him that not all adults are trustworthy and that he can't listen to everything he hears.

I know his strong determination will serve him well one day if he is not led by the pack, not a mindless follower. It is truly my hope for him that he will be a strong and assertive man who stands by his principles and doesn't bend to pressure. The thing is, I have to survive raising him first! :)

I'm just thankful that after months of working through this, we are seeing progress. I hope that next week's karate lesson is better and that Christian learned something today! I'll be sure to keep you guys updated! Thanks for reading!


Friday, July 7, 2017

Gasps and Growing

Earlier this week we visited Little Rock, Arkansas.  It was an extremely quick trip, there and back in about 38 hours. I was invited to interview with FamilyLife for their radio program. The program isn't available yet so I can't share links for it, but you can check out the FamilyLife website if you're interested in knowing more about them. ( The program will air sometime in Septmeber, and I will share it with you guys then!

I interviewed with FamilyLife about my book,
Through the Eyes of Hope.

We left the studio at 3pm and had a six hour drive ahead of us. We hoped to get home around 10pm and get the boys to bed. That was the plan. Unfortunately, it didn't work out that way. The first big snag was when I locked my keys in the car. That set us back a good hour.

Christian had dropped his iPod shuffle in the floor while I was driving, so when we stopped for gas, I tried to find it for him. It keeps him busy on the drive when there isn't much for him to do but sit and wait. So, we stopped for gas in Earle, Arkansas, and, trying to be smart with our time, we knew that this tank full would get us all the way home.

I got Christian out of the car and looked all over the floor and around his car seat. The iPod was nowhere, of course. Both boys were doing the potty dance, so I told Christian I would look again after we used the bathroom. So, I closed the doors and started walking towards the gas station. Before I even got passed my car, my dad who came with me says, "Do you have your keys?" In that instant I knew I didn't.

I had laid them in Christian's car seat to free my hands to look for the iPod and that's where they lay. I have the type of car that has the keyfob that won't allow you to lock your keys in your car. Unfortunately, the keyfob broke about a year ago and the dealership gave us an estimate of $150 just to reprogram it, and that price was for what they guessed to be wrong. If it was something else, it could be even more. I plan to get it fixed eventually. It just hasn't happened yet. *sigh*

Oh no!!!!! So, I immediately started trying to call a locksmith. NO ONE would answer their phone. It was the day after the Fourth of July, and I guess everyone was closed.  I called at least half a dozen places with no success. Great! So, we went to the cash register and asked the clerk if they knew if the local police department would come pop a lock. They said no. I called anyways, and they didn't answer!!!!  I was {    } <----this close to panicking. I mean, I was basically out of options. How were we going to get home?

Finally, I asked the clerks if they had a wire hanger. What else could we do? Breaking into my car was really all we had left. One of the clerks immediately began searching for a hanger for us. She spent a good ten minutes looking for a hanger, calling another part of the store to ask if they had one, even searching in her car for one. She finally came back with two hangers! Those hangers looked like salvation!

Not only did she produce a hanger, she came out to help us pop the lock! My dad pried my door back while she got the hanger inside and after just a couple of minutes, she was able to press down on my unlock button and unlock the doors! Unsung hero, y'all!!!!!

My dad grabbed his wallet to give her some money, but she refused to accept it!  She helped us just because she saw that we needed help. I am so thankful that if we had to get locked out of our car, it happened there at the gas station she worked at. If she had not helped us, I have no idea what we would've done.

So, we were finally back in our car. What a relief! My car alarm was going off and everyone was staring and I was so happy to just be in my car that I didn't care! lol!

We went on our way  towards home. By this time it was 6pm and we were still in Arkansas. We had only made it about 1/3 of our trip home.  So there was no way we would be home by 10pm now, but maybe 10:30 or 10:45pm if the rest of the trip went smoothly.

The rest of the trip did not go smoothly. -_-

About an hour after the keys-locked-in-car incident, the boys had to potty again. So, I pulled off the highway and found another gas station. Christian was literally about to pee on himself, so I jumped out of the car, grabbed him, and began a mad dash to the restrooms.

About the time we got to the door, a mother and her teenage daughter were standing there, and I had to step ever so slightly around them. In my mad rush, I was concerned about preventing Christian from peeing on himself, but just happened to notice the look on the face of the teenage daughter as we got closer to her and the gas station door. Ugh. She registered shock. I had no intentions of responding to that. I never do, anyways, but Christian needed to potty, and I was holding him and stood to get peed on too, if I didn't get him to a toilet soon, and that was a great concern in the moment. That all too familiar fear that I always feel in the pit of my stomach when things like this happen, it rose up, and a thousand things rushed through my head. "Please don't say anything. Please let us by. Please don't stop me to talk. Please don't stare. Please stop gawking. PLEASE JUST STOP!"

Before I could make it in the door around this mom and daughter, the daughter's look of shock turned into an audible gasp, a ridged body posture,  and terror on her face. My heart sank as my legs were still trudging towards the gas station door.  Then, as quickly as I felt the disappointment, I felt the anger rise up. Christian heard that gasp. I pray to God he didn't realize it was directed at him, but in that moment, that was all I could think. What do I tell Christian about this?

My instant reaction was to simply glare at her as I reached for the door to the building. If  looks could kill, y'all. Her mother noticed the entire incident play out. She looked from me to Christian to her daughter and back to Christian and I. She saw her daughter gasp in utter shock and fear at my child. She saw my look of disdain for her daughter's reaction, and in what I can only imagine was her  motherly instincts kicking in and attempting to help her daughter,  she said "Awwwww!" in a kind, sweet voice, and gave a large smile. I did not smile back. In fact, I was probably glaring at her too, as I shifted my eyes from her daughter to her when she spoke.

All of this transpired in literal seconds. As quickly as it happened, it was over and I was inside the gas station looking for a restroom. As I helped Christian with the toilet, I tried to register what just happened. I was angry and in disbelief, and also ashamed that I hadn't handled it better. I generally try not to glare at people in public. Generally, I try not to respond to rude people with rudeness.

Christian was saying something to me, I don't remember now what he was talking about. I just remember praying silently that he wouldn't mention what just happened, that he didn't realize what had just taken place in front of the gas station. I remember answering a question he had asked me, and I had to swallow the lump in my throat to get the words out. My legs and hands shook just slightly as I helped Christian off the toilet and to the sink.  He kept talking and I struggled to keep my voice upbeat and not let him hear the shaking in it.

As I took Christian back through the gas station to get to the car, we passed by the mother and daughter again, this time inside the store, and this time, not as close in proximity. They never looked over at me and I never looked over at them.

I kept my eyes locked straight ahead on the door and moved quickly to get Christian outside. I felt like I was running away from something. In reality, I seriously doubt they would have dared to approach us again, especially after my glaring at them, but I was terrified they would. I was terrified they would come up and try to apologize or say something about the incident, and then, if Christian hadn't realized what happened, he surely would at that point.

So, I bolted for the car, got Christian buckled in, sat down, and put the car in drive. I breathed in a deep breath and let it out slowly, trying to let go of what just happened. I wish it was that easy. My shoulders slumped forward with the heavy weight of what I have carried for six years becoming just a little heavier in that moment.

Not only was I disappointed in the actions of the teenage girl, but I was also, and more so, disappointed in myself.  I could have I SHOULD have reacted better. I should have showed kindness. I was already stressed from the incident an hour earlier with my keys, and the exhaustion of an 800 mile round trip plus interviews in 38 hours was hitting me. But still,  I wish I had responded differently. In all honesty, I probably just built a barrier for that family when it comes to people with disabilities rather than a bridge, and that's not who I want to be. That's not who I am or what I am called to do.

When the pain of incidents like this is fresh, it's hard to remember, but I know overall, this will make me stronger. I will be a better person for having experienced this. I will allow God to use this to teach me, refine me, and help me be better than I was in that moment. Thank God that the incident didn't end when I walked out of the gas station. It continues inside of me while I process it and learn what God wants to teach me through it.

Thursday, May 25, 2017

"You will never influence the world by trying to be like it."


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

An Inside Look at Sensory Issues

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. 

Thursday, April 20, 2017

"He Should've Been Aborted"

There has been a lot of heated debate lately on my social media accounts about children with special needs. What could anyone possibly find to debate about them, you wonder? Their value and worth. Oy!

Shocking as it is, it's the truth. I have heard it all of Christian's life. The argument is always  that parents who carry children with disabilities to term and allow them to live are selfish. The premise of that argument is that people with disabilities are better off dead than disabled, that having a disability means they are suffering, and that they are a burden on society anyways, financially and otherwise.

I just wanted to take a few minutes to debunk this way of thinking once and for all.

First, let's address the selfish parents thing. Parents of special needs children are literally the most selfless people I know. I don't say that because I am one but because I am a personal witness to it. I say it because I know the amount of sacrifice I have personally had to make so that my disabled child can have what he needs and I know countless others in my own community that do the same. I'm curious as to how many folks who are out there calling special needs parents selfish actually have first hand experience with what they are talking about.

My guess is zero to none. I have given up so much sleep over the years that my health suffers for it. I have given up more meals than I can count. I have spent the last six years of my life driving Christian to appointments, doctors, specialists, therapies, educational opportunities, and a school for blind kids, totally on average 3000 miles per month, spending upwards of $300 a month in gas, wearing myself thin, giving up the things I would rather have been doing, so that he could get where he needed to go, get the care he needs, and have every opportunity he deserves. I have given up so many of my wants and even needs for his sake. I have given up countless hours that should've been spent with my husband, and my marriage has had to suffer. I have given up countless hours with my younger child, who deserves me just as much. I have given up times that I wanted to spend with my friends, and have had to place friendships on the back burner. I have given up my peace, stressed to the point of vomiting, so many times while I sat in OR waiting rooms waiting on his surgery to be over or waiting on phone calls from higher ups who get to make decisions about Christian that I don't get a say in. I couldn't even guess at the extra expenses that we have incurred because of Christian's medical and educational needs. Thousands upon thousands. Not to mention the fact that I had to quit working to stay home and care for Christian since we couldn't put him in a day care. Not that I'm complaining, I have loved staying home with him and would much rather be with him than at a job, but it sure does make finances tight.

And I am not special in that respect though. It's not to brag, but to just show the reality of it. Every parent of a special needs child that I know does this exact same thing. They give up careers, marriages, friendships, their entire lives, to ensure their child has what they need. And the thing about them all is that they don't complain about it or regret it. In fact, they all say they'd do it again if they had to, because their child is worth it. And, none of them consider themselves special. They are simply doing what it takes to care for their child properly. It just so happens that their child needs a lot more care.

I'm just not sure how anyone could see a parent of a special needs child and see selfishness. I've heard people say, "You only kept your disabled child so you could fulfill your selfish desire to be a parent," I can't even understand how anyone could use an argument that is so illogical. If someone just wants to be a parent, why wouldn't they abort the disabled child and try again for a child who won't cause so much emotional, mental, physical, and financial strain? The truth is that human beings are not disposable. This isn't Sparta. We shouldn't just toss out the children deemed "too weak" or "imperfect." And yet, some basically glorify the same thing in our society don't we? We call killing "compassionate" and tell ourselves it's "for the child" to ease make it sound not as terrible as it is.

Moving on, let's tear apart the way of thinking that causes people to make such silly arguments as the one I just ripped to pieces above. Let's just be blunt here. No use pretending it is something it's not. Call it what it is. There are people who actually think that being dead is preferable to having a disability. The only thing I can tell you here is this: If you don't have a disability or if you are not intimately acquainted with someone who does, you really can't make an educated decision in that area. Go find a disabled person and ask them if they would rather be dead or have their disability. If you are hesitant to go up to someone and ask that question, ask yourself why you hesitate. Is it because maybe, you realize that it might be offensive? Well, it is. Mostly because it's ignorant to assume that a disability is worse than death. Ignorant literally meaning that you lack knowledge. So, educate yourself. Go talk to someone with a disability. Get to know them. Learn what their life is like, really like, and then maybe you will have a better understanding of this subject.

Let's discuss this suffering thing now. Name me everyone you know who is currently suffering with a disability. Ready, go. .................

Yeah, my list is about as long. People with Down Syndrome are not suffering. People with vision impairments are not suffering. People missing a limb are not suffering. People using wheelchairs are not suffering.When I think of "suffering" I think of people going through chemo treatments, and the havoc chemo and cancer can do to a person's body. But cancer isn't a disability. It's an illness. Chemo isn't a disability either. It's a treatment for cancer. Either of those might cause a resulting disability, but they aren't one. The person isn't suffering because of the disability but because of an illness or it's treatment. I think of someone who was just in a car wreck and how much pain they are in, the surgeries they might have to have, the broken bones, bruises. That, I would classify as suffering. But a car wreck isn't a disability. It might cause one, but it isn't one. It's an accident. And the car wreck is what caused the suffering, not the resulting disability. See the difference?

That's not to say that some of the things people with disabilities might go through don't stink. Many kids with Down Syndrome have to have open heart surgery. That is painful, no question. However, many kids without Down Syndrome have to have open heart surgery as well. The thing is, suffering, pain, hard things, aren't reserved for folks with disabilities. Suffering isn't something exclusive to the disabled club. People without disabilities go through sucky things too. People with vision impairments are not suffering from a vision impairment. They are LIVING with a vision impairment. Yes, it does suck sometimes having to navigate a world made for people who can see when you can't. I know this at least second hand from Christian. But does that equal suffering when he trips on a curb because he can't see himself approaching it? No, he tripped. He didn't suffer. I trip sometimes and I can see the curb coming. That isn't suffering. He is actually incredibly happy, loving, and cheerful, and when he trips, he picks himself back up and keeps going. Having a disability does not equal suffering, but, watch out, sometimes it causes tenacity and instills incredible strength.

I can explain one way having a disability does equate some secondary suffering. Social stigma. Can you imagine that just your appearance causes people to make a snap judgement about your value,your worth, what you can contribute to society, whether or not you should be ALIVE? Can you imagine a world where you are bullied simply because you look different, or walk differently, or do things slower than other people; simply because you aren't like everyone else? Well, welcome, because this is the world we live in. Having a disability automatically labels people in our society as "less than," less deserving, unequal, unattractive, awkward, unworthy, avoidable. Over something they didn't choose and have no control over.

That does create suffering among people with disabilities sometimes, and still, it isn't suffering caused by the disability. It's caused by people who choose to look down on or bully or stigmatize people with disabilities. The problem is the bullies, not the disability. The disabled folks can't stop being disabled, but the bullies could stop being jerks if they so chose. In other words, that is one type of suffering that could be ended immediately and forever if people would simply choose to end it.

Finally, I want to talk about just how little of a burden people with disabilities are on society. I was sitting in a Tennessee State legislature health sub committee meeting a few months ago, and a doctor was speaking. A bill's fiscal impact was being discussed. The topic of the bill isn't important at this point and I don't want it to distract from the issue at hand, but what he said rings true. A legislator said "When we are talking about human lives here, money can't be the most important consideration. Yes, we have to think about it, but it can't be priority number one."

I have heard so many times that Christian will be a "burden on society" because he will always live on government assistance. The funny thing is, people who are so uneducated to actually believe this don't realize that blind people can have jobs too. So can people with an array of other disabilities. What on earth makes people think that having a disabilities automatically means a person can't work? Christian is a higher belt in karate right now than most of you reading this, so how can you ever say "He can't" anything? Sure, there will be jobs he can't do. He can't be a NASCAR driver, or drive a taxi or be a surgeon, but I can think of a thousand jobs he could do! He could follow in my footsteps and be a lawyer if he wanted. I actually know a lawyer who is blind. We have never told Christian that he can't. He has no concept of the things he can't do! And it certainly isn't anyone else's place to start putting junk like that in his head right now. He can and he will, and so do so many other people with disabilities every single day.

And why is money the only thing people every consider when they think about what someone will "contribute to society?" What did Shakespeare ever contribute to the world financially? Picaso? Anne Frank? Mother Teresa? Mozart? Surely you are picking up what I am putting down here. Money isn't the only thing people can contribute to our society. There are so many people with disabilities that have done amazing things for our world, and surprisingly, some of the people I mentioned above had disabilities. Christian contributes joy, love, happiness, and completeness just to our family. I am sure so many other people could also name ways in which Christian has enriched their lives. (Anyone who wishes to share what he has contributed to your life, please feel free to do so in the comments section of this post if you'd like)

Overall, I think I can summarize everything I've said above with this: If you can say that a person with a disability should have been aborted or that they are better off dead or that they are suffering, then you obviously don't know anyone with a disability. You are simply uneducated, and so, I encourage you to get out there and meet someone with a disability. I promise you it will change you for the better.

Saturday, March 18, 2017

To My Child Who Lives in The Shadow of His Brother's Disability

Chandler, my child. My wild one. My all-boy, car loving, star wars obsessed, sweet, three-year-old.

You have spent your entire life living in the shadow of Christian's disability. It's all you've ever known. You have slept on hospital couches, ridden literally thousands upon thousands of miles to make Christian's appointments, and spent most of your time as second string to Christian's internet popularity.

You have sacrificed so much to be so young. You have given up a "typical" childhood. You have given up days spent with "just the three of us" as nurses come in and out of our home all week to care for Christian. You don't act like the "baby" of the family, probably because you don't get to be the baby. You have had to grow up so fast. Your brother has needed you. I have needed you. To be more independent. To help out. To carry your share and,, it literally hurts me to write this, but part of Christian's share, too. Because Christian can't.

You have been measured and compared to your big brother for your entire life. Christian was never into things like you were as an infant. Christian would never think about getting into the stuff you have. We fought so hard for Christian's first steps that the day they happened was a celebration. The day you took your first steps in the front yard of our home one hot June morning, wearing that yellow shirt with the little crab on it, will forever be imprinted in my mind, but no one else seemed to make a fuss. So often people have approached us in public, doting over Christian, drawn to him or recognizing him, fussing over how wonderful he is, only to finally turn to you before they walk away, almost as an afterthought that it would be rude not to speak to you too, and ask what your name is again, because they forgot; or just call you "Christian's little brother."

You have spent so many hours in waiting rooms and parked cars while Christian was in therapy, hundreds at least, instead of playing. You didn't really fit in at therapies as a typical child. You weren't welcomed in the therapy rooms, but it wasn't fair for you to sit in a waiting room hours a week either. You were just sort of stuck. It broke my heart that my hands were tied and I had to choose between getting Christian's therapies or giving you necessary time to play. I knew which one I had to choose, but it wasn't because I chose Christian over you. I hope you know it was never Christian over you.

You learned patients at such a young age, waiting while I tend to Christian's needs first, even if you needed things, too. Sometimes his medical needs couldn't wait. Sometimes I had to choose to do a tube feeding or take my incontinent five year old to the bathroom again rather than just sitting in the floor and playing race cars with you. All you wanted sometimes was for me to sit and play race cars with you. But you waited.

One of my all time favorite photos of Chandler!
You had to grow up quicker than most kids. You didn't get to just be a kid. You had responsibilities right away, from the moment you were able to carry them. You had to watch your brother endure painful procedures and lie, bloody, in hospital beds, too young to even understand why it was happening. You had to step up, do and learn things on your own, because I was overwhelmed with teaching Christian.

In all that you have endured in your young life, you have the right to complain and feel cheated. But you don't.

Brothers Forever

You wake up every morning with a "Mama! It's a hot, sunny day!" even when it's cold and rainy outside, because for you, the sun shines even on the dark days. You are the sunshine on the dark days.

You have reason to be unhappy, but you aren't. Your joy is so radiant that it infects others and you are desperate to share that joy everywhere you go. Joy for you is so simple. It looks like a Hotwheels Car, a cup of chocolate milk, or bowl of spaghetti. As surely as your eyes open in the mornings, your mouth begins to turn up in a smile. Joy is your default.

Picking at each other and loving it
You have a deep understanding of what it means to be a family, to care about each other and work together for the good of everyone. You genuinely love people and always see the good in others. Your friendliness and acceptance of everyone you meet is admirable. You can't wait to show others your race cars, anxious to share your joy. You want nothing more than to share with others and love them.

You are wise  beyond your years, an old soul. I guess you've had to be. You've had to play the role of big brother, to guide Christian since he can't guide you. You've had to fill shoes that were never yours to fill, and yet you take it all in stride and do it anyways.

I'd be lying if I said I didn't sometimes feel guilty for all that you have had to go through at such a young age, for all you have sacrificed for your brother and for me. You deserve the world, and I want to give it to you, but sometimes you end up with so much less. It isn't fair. It's definitely not fair. You certainly didn't ask to be the younger brother of a little boy with so many extra needs.

 But instead of letting it run you down or make you bitter, I am watching you turn into the most amazing young man. I feel honored that I get to see you developing into someone who is so kind and compassionate. You have let your short life experience refine you and shape you, and you are going to be the most amazing man one day. Chandler Tate Buchanan, you aren't living in a shadow. You are making your own sunshine out of darkness.

I'll show you the way Brother!