Christian Taylor Buchanan

Christian Taylor Buchanan

Wednesday, December 6, 2017

Our First Semester of Homeschool

First day of Homeschool Co-op
Look how much they've both grown!


We wrapped up our last day of our home school co-op for the semester this week, and so I wanted to write an update on how our homeschooling was going. I get asked often about it, so I wanted to take the time to write out a little more detailed update everyone!

First and foremost, I am extremely pleased with how our first semester of homeschool has gone. It all started out a little rough, and has ended up looking nothing like what I expected, but I think the beauty of homeschool is that it has ended up looking like exactly what my kids have needed. 

I started the year with a plan in mind, (I would hope any teacher would lol) and that plan included lots of working through a reading curriculum with Christian. I have a great reading curriculum for braille, and I just knew that if we could get through that, Christian would be set. 

Well, that didn't work out, exactly. Christian was inattentive and not progressing with it. It was a struggle to get him to pay attention, to answer questions, and really, to get anything out of the lesson. I knew we were just struggling through it with little return, wasting our time really. So, I turned to my home school co-op moms and asked for advice. They were full of great suggestions and helped me refocus my goals. When I did that, everything shifted.

I began focusing less on the 'book work" and more on experiences. If I had to describe my style of teaching, I would describe it as learning through play. We have taken a ton of field trips, to airports and fire stations and the like, which the boys have loved. We visited Indiana and went fishing. We visited the Alamo in San Antonio, Texas. We visited Orlando, Florida and played on the beach. We have visited Little Rock, Arkansas. We watched a total solar eclipse right in our own home town! We have taken friends to explore Nashville. We have done radio and tv interviews (job skills anyone!?) We have swam, taken soccer lessons, played at the park, gone on hikes and found waterfalls, played in the creek and The boys have had TONS of experiences!

We have done lots of reading and some pre-writing, but instead of making it book work, I took a different approach and made it play. We have attended our home school co-op every week as well, where Chandler has learned about letters, done math and sensory games, read books, sang songs, played, and learned how to socialize. Christian has taken a creative writing class where he has learned about sentence structure and developed ideas about how to write. He has also done a US geography class and knows most of the states and capitols at this point. His lego class helped him work on team work skills, listening, fine motor skills, and engineering skills as he has had to figure out how to solve problems by building things. They have both also done a praise and worship class, learned several verses of the bible by memory, the books of the new testament, and are singing lots of songs praising Jesus.

Christian continues to take karate every week and we also added violin lessons last month. We visit the library often and chose books to read. We have read several dozen books this semester, as well. We have created art, sang songs, and learned so much!

As far as what specific gains have been made, I thought I'd list a few. I will be excited to look back on this in a few years and see how much further the boys have some! Christian is almost reading the entire braille alphabet now with proficiency! He actually loves reading braille! Chandler is starting to write letters and can sight read a few words!

Chandler is building with legos now and is able to set up and build scenes from his favorite movies and shows, and loves to pretend with them. Christian is really into technology right now, and we have read a few books on different technology and how it works. I hope to begin working with him on accessibility with his iPad next semester.



Beach bums!
I have spent a lot of time this semester on independence and responsibility with both boys as well. Both boys are now able to completely undress and help about 50% with dressing. That's a huge improvement from the summer. Christian can put his shoes on by himself, and both boys can put dirty clothes in the hamper, put shoes, hats, and jackets where they go when we return home from a trip, and help me clean up like pros. They also help me feed the animals at home each evening, and sometimes help me cook meals. There are so many tiny gains that I couldn't possibly name them all! Chandler has learned to order for himself at a restaurant. Christian is blowing through goals at his therapies. In speech, I just got a progress note today that he met 3 or his 6 current goals, which she said is amazing, and that she is now adding new goals, which just means progress! In occupational therapy, he has learned how to button and snap clothing, and is doing amazing with sorting objects and learning same and different. These are things he struggled with not long ago, and now he is doing them with ease. In feeding therapy, Christian is now tasting any food we offer, taking bites of yogurt any time, and holding foods in his lips and teeth. We are now working on helping him learn to hold foods in his cheek, and I truly believe he will be eating foods in 2018!!!

As for science, we did a big unit study on the solar system, and both boys can tell you just about anything you would need to know about it! I hope to do a study on the human body and on bees next semester! They literally know more about it than some adults. That is mostly because they were so interested in it. They were just hungry for the knowledge and I fed it to them!

With math, Christian can add and subtract easily, sort, and is doing well with patterns, getting more

complex as we go. He can count as high as I will let him with little help, and can count objects up to at least a 100, but I haven't tried to see if he can count objects any higher lol. Chandler is doing well with simple patterns and can read all his numbers 1-10. He can count well and can count items at least up to 20. Concepts like large small, big little, more less, greater fewer, etc are all mastered concepts for both boys!

sorting
Socially, Christian has really come out of his shell this year. He can now hold conversations and enjoys doing it! We were sitting at the car wash this week and he said hi to every person who came in and asked how they were doing. He loves meeting new people, greeting others, and telling them about himself. You should have seen him at our book signing last weekend! He was greeting everyone and having a blast talking to others. As for other kids, he loves having friends, and he couldn't ask for better ones in our co-op. These friends love Christian and treat him like another kid in their co-op, but also know that he needs some special help! A few weeks ago, a group of his friends were actually arguing over who was going to help walk Christian to his class! They love helping Christian. They understand his needs on a factual level, and know him on a personal one. Christian has come to understand, in the best way possible, I believe, that he has some differences, but that he is not different. It's a beautiful thing, really, to watch him coming into this understanding, because his confidence still shines through, and I think, even brighter. I was so scared of that, of how it would come about, of the pain that could be attached to it. But there isn't any pain attached, and in fact, if you ask Christian, he will tell you his eyes are special, and he is just like everyone else. I am so proud!
counting

Chandler has really grown up this semester. He really is a little boy now and not my baby. He is also my helper. He helps me mama Christian, even when I don't want him to. haha! He helps me around the house a lot and just helps me keep an eye on that cheeky brother of his, while still remaining mischievous himself. He loves helping.

One thing that I LOVE about this semester is that both boys are really starting to understand some character traits that I hope to instill in them. They are beginning to understand caring about one another, empathy, compassion, generosity. They are beginning to understand more about who God is and who Jesus is! We have learned a mantra this year "Do not fear, God is near" to help the boys when they are scared or nervous, and Christian told his daddy the other night to not fear because God was near. These are things we have really focused on this year. If my boys never do anything else in life, I want them to know Jesus and love others. I think that is our highest human calling, so that is where I am really trying to drive it home. I have slacked in the past with the excuse that they were just too little.

The boys are just doing fantastic, really. They absolutely LOVE learning. While I was folding laundry this evening, Christian wanted to talk about the states and their capitals! We spent about half an hour playing a quiz game where I told him a state and he tried to remember its capital. He did really well! (He knew more than his daddy did heehee!) We just play all. the. time! Everything is play, and all play is useful for learning!

I could probably write for the next hour about all the gains we have made this semester, but I won't keep you here all day. :) I hope this does give you a good idea of how successful this school year has been so far and how happy I am with everything! I am so glad we made the choice to homeschool. Not only have the boys done amazing, but I have learned and grown so much myself! <3
Lake Life
Captain Chan

I will treasure these days with my boys forever! <3

Thursday, November 30, 2017

Surgery Number 8 - Coming Up

Yep! You read that title correctly. We have surgery number eight scheduled. I wanted to go ahead and let everyone know what is going on and ask y'all to begin praying for my C.

We are having a minor procedure, thankfully, on January 4th to place Christian's fourth set of ear tubes. This time, we will also be having Christian's adenoids removed.

This all sort of started when he fell and broke his nose. A blessing in disguise maybe? Christian was obviously concussed from his injury, along with the broken nose, as evidenced by the fact that he began vomiting once we reached the emergency room that evening. That warranted a CAT Scan to make sure there was no bleeding on his brain or anything else of concern. Thankfully, the scan showed no signs of serious injury except for the fractures on his nose. However, the fluid build up in his sinus cavity was so notable that the radiologist who read his scans made note of it. I wasn't aware that there was so  much build up. All I can go by is how much drainage there is, and I have honestly probably become a little too accustom to seeing some amount of drainage that either there was no evidence or I just missed how much sinus issue was actually going on with Christian.

So, at the ER, the attending physician read the radiology report to us and noted "otitis media of the right ear." He sort of laughed, as if to brush it off, saying "I've never seen anyone diagnose an ear infection by cat scan." I bet he hadn't. Most of the time, it's so obvious that a cat scan isn't needed, I suppose. The scan also noted fluid in Christian's mastoids, which are pockets behind the ear that are not supposed to have fluid in them. That is not something that can be detected with a visual exam, and no doctor in their right mind is going to expose a child to radiation to check for an ear infection. Christians ears actually checked out clear by visual exam that evening. There was no sign of an ear infection to those of us looking at Christian. The only way any of us could realize there was an issue would have been that scan or Christian telling us. Bless his heart, I suppose that he is so used to living with just...snot... all the time, that he didn't think anything of it. He is certainly one to tell me if he isn't feeling well, and he hadn't said a word. This is just life for him, unfortunately.

Christian has dealt with chronic ear infections, sinus infections, and rhinitis for most of his life. He has been on allergy medications since he was old enough to be on them, I do every homeopathic treatment I can do for him, and still, the sinuses never really go away. They are better at times, but in the winter, it's pretty much constant sinus drainage and a few infections thrown in that require antibiotics. Besides two allergy medications, Christian also gets local honey, a probiotic, vitamin C, D, and magnesium, and extra water in his tube daily. He gets an extremely healthy diet full of fruits and veggies, low in carbs and red meat. I also run a cool mist humidifier by his bed every night and use essential oils on him like they're going out of style. We have done allergy testing which provided no helpful information except that he isn't allergic to anything, and we have trialed ever allergy medication that he can try to see if any would be helpful. And yet, the sinuses persist.

Being on antibiotics often is just not a productive way to do things. Christian has had c diff before and we do NOT want to relive that. Christian just can't go back and forth to antibiotics every few months. It stops the issues temporarily but never truly gets to the root of the issue to solve it.

We've had three sets of tubes already, so I know from experience that ear tubes provide a lot of relief from ear infections for Christian. Allowing the fluid to just drain instead of build up means that Christian rarely ever gets an ear infection when he as tubes in. They pretty much become non existent, which means antibiotics become non existent in his system.

Right now, he has been without tubes for about a year, purposefully. There is always a balance to be had. Prolonged use of ear tubes ca cause damage to the ear drum. Christian's hearing is his link to the world, so it's vitally important that we protect it aggressively. So, we have to balance the damage that can be done by having ear tubes with the damage that can be done by having constant fluid build up behind his ear drums. His ENT and I agreed to remove Christian's tubes last year and see how he did. He'd had t tubes, which are a longer lasting tube than the typical one year expectancy, and done extremely well with them. He had went over a year without a an ear infections and his sinuses were fairly under control. So, we removed the tubes in hopes that his chronic ear infections would be done now that he was older, as is the case sometimes with kids. And he did great! Until he didn't.

Christian's sinuses have flared back up recently, for reasons we can't figure out, and we are on ear infection number two in a matter of a little over a month. *sigh*

So here we are scheduling another ear tube placement. His ENT also recommended that we remove Christian's adenoids this time around as well. He said that in 80% of patients, it helps with sinuses and allergy type stuff. The reasoning is because bacteria can get trapped in the adenoids and just hang out there, causing reoccurring problems.

The ENT assures me that this is a fairly simple procedure and that Christian should be back up and bouncing quickly. However, I know that no procedure is ever routine when it's my child involved.

The ENT and I definitely discussed Christian's unusual anatomy. We think it's mostly to blame for his chronic sinus issues, and there is little to be done about that. But also, being the helicopter mom that I am (lol) I did discuss with the ENT the prospect that he would get inside Christian's mouth to remove his adenoids and find that his anatomy made it too challenging or risky. I made sure he knew that I would not be okay with him continuing ahead and taking any risks that were not feasible for the end result, which we hope is less sinuses. However nice dealing with less sinus issues would be, it's certainly not worth taking risks on harming Christian's internal anatomy or causing more surgery to be needed. That's honestly my biggest concern, and it's a concern of the ENT, as well. That, and the fact that Christian will have to have IV anesthesia.

There just aren't too many routine things that are routine when it comes to Christian. I am confident in our ENT's abilities and care for Christian (otherwise we wouldn't be seeing him), but I am always nervous about surgery.

I am not planning on telling Christian until after Christmas. I decided that his probably reaction to learning that he has to have surgery will be to be stressed and anxious about it until it's over. So rather than having him stressed and anxious for the next month, I am going to let him enjoy Christmas and begin preparing him, maybe a week, or less, in advance.

So, between now and then, please be in prayer for Christian, his doctors, and this procedure. Please specifically pray that the adenoid removal procedure will be easy and smooth and without complication for Christian.

Thursday, November 16, 2017

I Am A Self Proclaimed Helicopter Mom

Spend about three seconds on the internet and you will find someone who is offended about the way you raise your kids. They will probably be strangers who don't know you, your situation, or your kids, but they will surprisingly have all the answers to your life. 😒

I've read a few articles about helicopter moms and how this is such a terrible thing. It creates fragile kids who are dependent on others, etc. etc. I've pretty much heard it all in that respect, and while I don't take it personally because hey, I realize these folks don't know me or my situation so they really can't say what is the best way to raise my kids, I will be the first one to admit that I am a helicopter mom. I'm not ashamed of that fact, nor do I think it's making my kids into terrible people. I don't think that parents who are the opposite are doing anything wrong either, by not raising their kids how I raise mine. I think they are probably just doing what they think is best to raise their kids, just like me.

I have always been protective of Christian. Him being my first born, I don't have any other experience to reference. I have no idea what it's like to be a mom to only a "typical" child. I learned how to be a parent with Christian. So, maybe my perception is a little skewed, or at least, not what most people experience. We are all shaped by our experiences and use those experiences to shape our decisions about the world. And these are mine. 

My first moments as a parent were spent sending my child off to a NICU where I wouldn't see him
again for about eight hours. My first week as a mother was spend making trips to a NICU room where my baby was being monitored 24/7 by medical professionals, many of whom were trying to figure out what to do with him, while I was simultaneously trying to figure out what do to with him. 

The next three months of my first parenting experience were spent in that NICU and then back and forth to that hospital three to six times a week, every single week, watching my child go through procedures and surgeries at an alarming rate. When Christian was three months old, I watched him come out of a surgery and I wasn't sure he was going to make it through. I sat in a hospital and prepared myself for him die, however prepared one can be for something like that.

Things have definitely calmed down since then, but you can't just walk away from that the same as when you started. I didn't walk away from it unscathed. I have scars left from healed wounds, and while the wounds are healed, the scars will always be there. 

From those first few months as a parent to now, I have fought for Christian against insurance companies, doctors, and SSI. We have spent, rough estimate here, around 1000 hours in therapies in Christian's life helping him make gains and grow in ways that he might not otherwise be able to grow. 

For Christian's entire life, I have dealt with push back from people who have no issue telling me point blank that Christian should've been aborted, that he's a monster, or that he doesn't deserve the same rights and privileges as other kids who aren't disabled. I have had to hear people say disgusting and awful things about him, for no other reason than that he doesn't look like them. 

For Christian's entire life, I have needed to protect him, to fight for him. I have been forced to be on high alert at all times. You just never know when the next hit will happen or where it will come from. There is an extra layer to special needs parenting that I struggle to even describe. Parenting is basically the most stressful job in the world, except for maybe a shark wrestler. 😂 When you become a special needs parent, you take on this weight and responsibility to the extreme. It is extremely heavy, ever shifting, and always worth it. 

Imagine this. You sign up to play on a soccer league. Soccer looks fun. You might make some new friends, learn some new skills. It's gonna be great! Then you show up to the first practice, and while the coach is telling you this is soccer, all you can see are footballs and baseball bats. Confused, you wonder how you are going to play soccer with footballs and baseball bats, but you try anyways because, hey, you signed up. The coach never clearly or directly answers a single question you have. Everything in this game is relative and up to interpretation. Suddenly, the coach throws in all these crazy rules that you've never heard. On Tuesdays you have to be blind folded when you play. When it's sunny outside, you have to guess the score correctly ahead of time or you automatically lose. Every fifth game is played in reverse. You are confused because nothing makes much sense, none of this is like you expected, and you wonder if you will ever get the hang of this game. 

Meanwhile, all your teammates are playing soccer, the soccer you thought you were signing up for, and they are totally oblivious to the fact that you aren't playing the same game they are. They are enjoying the game and playing by the rules you thought you knew. Finally, though, you figure out how to play this strange game. You learn the rules and you actually get good at it. Occasionally, a rule changes, just to keep you on your toes, and you have to learn to adjust, but you always manage. You actually begin to learn to enjoy the game you get to play. You might even become an expert at the game and teach others play, too. It's never not stressful, trying to play this game, because the game is hard, but you learn how to manage that, too. 

Being a helicopter mom isn't something I chose lightly or decided on a whim. It is something that has
been developed in me over years of stressful situations that were out of my control. It developed through trial and error, realizing that anything else created results that were not good for my boys. Being a helicopter mom doesn't mean that I never allow my kids to learn by trial and error. My kids insist on learning by trial and error a lot. They refuse to listen to me on some things, and just won't stop until they figure out, sometimes painfully. Being a helicopter mom doesn't mean I never let them get dirty. We smear cupcakes in my kitchen every Christmas just for fun. We love dirt. I encourage mud puddles and messes with my kids. It doesn't mean that I don't allow my boys to experience life and protect them from every little scenario. 

In the ER with a freshly broken nose
But I hover. I totally hover. I have to. And I make no apologies for it. Christian's safety just won't allow any different. Shall we even recall the broken nose he just got two and a half weeks ago when I left him alone in the kitchen for three minutes and he managed to fell down our steps in our bedroom? The same steps we have practiced navigating multiple times. The same steps I have asked him not to go up and down unless I'm with him. When you can't see the steps in front of you or the ditch up ahead, every step is dangerous. I have to hover so that Christian can walk safely. I choose to hover so that we have fewer injuries and accidents, although I still can't prevent all. I wish I could! 
 I hover so that when someone approaches us in public and says something about Christian, I can intervene quickly and help Christian deal with it in a way that won't leave him damaged. When a child runs up and says "What's wrong with his eyes?!" I can turn it into something positive and help Christian walk away from the situation happy and confident in who he is. To some, I'm sure I look crazy, keeping such a close grip, if you will, on Christian, but until they have lived what I live and raise the child I am raising, I just don't let that bother me. 

I'm just going to keep looking crazy, I guess, because I am going to continue doing what's best for Christian. So, call me crazy! I'm THAT mom. I am the helicopter mom and I am not afraid to admit it. 








Wednesday, November 8, 2017

Why Having A Special Needs Child Changes Your Outlook on Having More Children


I posted this week on Facebook about how I have seen soooooo many pregnancy announcements recently. I joked that my uterus was crying, but that I knew it wasn't happening for me, at least not any time soon. That post got lots of comments. For some reason, you guys get all excited at the thought of my having more kids. lol! I guess it's because you love the ones I already have so much! 😍

I had a few people ask why I said it was not in the cards for me to have more kids and it really got me thinking. I know in my heart of hearts that another child is just not a good fit for our family right now, and I also know in my heart of hearts that I long for more children. It's a weird feeling.

Having a child with special needs complicates a lot of things. I wouldn't trade all the uncomplicated-ness in the world for my C, and y'all know that, but the fact is, disabilities can and most often do throw a wrench in our best laid plans. We have adapted and made new paths and kept moving forward, but there is an aspect of letting go of the "what-if's" and "could've been's" that I'm just not very good at.

The most obvious consideration in having more children is the glaring probability that another child would have special needs. When I found out I was pregnant with Chandler, I was immediately excited, but almost as quickly came the realization that this child could have Christian's condition, or something entirely different but equally complicated.  "And then what will I do?" are the exact words I asked myself.

I never answered that question. I still haven't. I've been too afraid to answer it. Maybe I'm afraid of  what the answer would be, as well. When I got pregnant with Chandler, I set that question to the back of my mind, tried to forget it, but knew I had to hang on until we knew. I wasn't going to even attempt to answer the question unless I knew I had to. Imagine my relief when we saw Chandler's beautiful lenses of his eyes on ultrasound for the first time. I remember it specifically. We had the same ultrasound tech for both my boys, so she was extra kind to show us extra images on the screen and do much reassuring for us. She was so awesome that I wrote about her in Through the Eyes of Hope. I will never forget that moment. That moment of truth. I held my breath. Holding in my panic and relief until I knew which one to let go and which one would be appropriate to feel.

My fear of having another child with a special need didn't come from being scared of a disability. I'm
not scared of that at all. It came from a second consideration I have to make when thinking about the prospect of more children. "Am I going to be enough?"

I'm a good mom. I'm not a perfect mom. I'm certainly not the best mom there is and I'm sure I have plenty of room for improvement. But, I would call myself a good mom. My kids are well loved, have all their needs met and some of their wants, and I would lay down my life for either of them without a second thought. But, I still, and probably always will, struggle with wondering if I am doing enough, being enough, for them.

My kids are high maintenance. They ask a lot from me. I know that's what kids do, but I have found that among my friends and acquaintances, my kids seem to require more and for longer than most kids do. That's okay. There's nothing wrong with that. It's just a fact. While everyone else at the cookout is socializing while their kids run around and play together in the back yard, I'm off alone with my kids keeping them from running out into the road or off into the woods by themselves. I'm keeping them from opening the pool gate and jumping in. I'm giving tube feeds and guiding Christian to the restroom every 30 minutes. I'm showing Chandler the boundaries of how far he is allowed to wander and explaining why he can't chase the strange dog and grab it's face. I'm telling Christian about everything he hears, because he always wants to know what he is hearing, and I am his eyes. I am helping him touch things in a safe way so that he can learn about them, because his little six year old curiosity causes him to be interested in everything and afraid of nothing.

I joke that my kids are in this phase where they constantly and relentlessly just try to kill themselves. Need I mention the broken nose escapade that went down less than two weeks ago from yours truly, Mr. Christian? Swinging on our baby gate, fell down the steps, double fracture, hugely swollen nose, and so much bruising I thought someone was going to call CPS on me. I joke, but the reality is, it is kind of true, and it's really not a phase, but rather a way of life for them. I have saved them both from certain death more times than I could even guess in their short lives. While I will, of course, continue to keep them from harm, it is an exhausting job. I don't get to rest or relax often. Maybe an hour a week, and my sleep is never sound. I am up a minimum of 3 or 4 times a night still, and that's a good night.

Christian is also very dependent still. I know it sounds crazy that I notice things like this, but I can't help it. I have friends who have said to their 4 year old "Go put your pajamas on." I was taken by surprise and noticed this because that is certainly not something I am able to do with my boys, either of them. Neither of them can dress themselves without a lot of help, let alone open a draw and choose pajamas. Yes, we work on it. Christian is in therapy every week learning to dress himself. He's had goals of dressing himself for years now. It just takes him longer to do things. So, when someone is able to allow their four year old such independence that my six year old still doesn't have, I take notice. I am in no hurry to get to that point with my boys. I certainly don't want to rush their childhood, because I know one day will be the last time they need me to dress them, and I am not quite ready for that. But, it does beg the question: How much more capable would I be of handling another child if my children were more independent? The answer is "much."

So, the reality that I have to look at is, if I added another child to the mix, would Christian and Chandler continue to get the care they need? I don't mean that I'm wondering if I'll be able to keep them fed. I think I can handle that part. lol! But their emotional, social and cognitive/developmental needs.

Right now, there isn't enough time in the day to sit them in my lap and read all the stories they want me to read. There isn't enough time to get in the floor and play with them as much as they want. There isn't enough time to talk to them as much as they want or answer all their little questions about the world. Christian has 5 appointments every week right now between therapies and karate, and we are about to add violin lessons to the mix. Chandler is not far off from being at an age where he will want to do activities of his own as well.

Throw homeschooling in the mix, which is sort of forced on us (the other option is having a less than appropriate and adequate education, and that isn't happening), and I'm just not sure how much more I stretch 24 hours, or how much less sleep I can go on. I feel like I am barely keeping my head above water most days as it is, and I always end my day feeling like I didn't accomplish enough.

Finances is another big issue to consider. Because of Christian's needs, and because we have to home school, the best choice for our family has been for me to stay home with the boys. Knowing that Christian is being properly cared for (and Chandler, too) trumps any amount of money I could make. While I am so, so thankful that we are able to be a single income family, living paycheck to paycheck has it's drawbacks. Surprising, I know. lol! It's difficult for me, also, knowing that I have a law degree and that I can't really put it to much use right now. I would love to start a full time legal career right now, but the reality is, I want more to be with my boys and raise them. One day they will be grown, but my law degree will still be around. I can work until I die, but I only get a few years of being their mama while they are little. So, I am thankful that I am the one who gets to be with them all day, and I never get tired of them or feel like I just need to get away really. (Although I do feel like I wish they'd go to sleep before 10pm lol.) Even though it makes finances more of a challenge and it causes me to have to be creative in making it stretch, I don't mind. But it is a factor to consider, and really, a big one. Could our finances stretch even further to accommodate another child? I'm not sure they could.


I'm not ruling out the possibility of more kids completely, but as of right now, it's just not feasible. My plate is full, although so is my heart, and I don't want to drop that plate because I've piled too much on it. My boys are my life, my reason for living and breathing. The thought of adding another sweet baby to the mix to love and nurture makes my heart fill full, but then reality is always close behind reminding me that another child is just incomprehensible right now.

Maybe one day, or maybe not. But for now, I am thankful that God saw fit to give me the two boys I have. He knew
what he was doing when he chose Christian and Chandler for me. <3

Friday, November 3, 2017

This is What Happens When The Media Stops Hiding Disabilities

Photo Credit: Sarah Feinstien Photography
I can see the changes happening!

I've been a part of the special needs community via Christian for about six and a half years, and the shift is noticeable from the time Christian was born until now. We, as a society, have come a long way. We still have a ways to go, don't get me wrong, but I am proud of the strides we are making in accepting people with differences and disabilities into our society as a normal and integral part of it!

Last night while I was getting the boys to sleep, I had the TV on but muted. It was on America's Got Talent (I think. The one with Simon Cowel, whichever show that is) and there was a person on stage who looked like she was singing. Since the TV was muted I couldn't hear her, but I grabbed the remote to turn the volume up because I knew I had to hear her voice!

This person is the beautiful and wildly talented Kechi Okwuchi, who actually survived a plane crash that caused burns on her entire body. For me, the thing that caught my attention quickly about her was her appearance. I always notice when I see people with differences on any sort of main stream media. Not in a bad or judgement way, but in a curious and studious way. I pay attention to how people respond to them, how they respond to being in the spot light, and just sort of take in who they are and what they are about. I think I'm just drawn to others with differences because of Christian. Sometimes I find that people avoid or turn away from folks with differences. I tend to gravitate toward them.

So, not only did Kechi Okwuchi catch my eye, but the audience and their standing ovation also put me all in my feelings. I was honestly a little surprised to see Kechi so accepted and celebrated. Not because she doesn't deserve it. She is so talented! But because so often I see the other side of the isle, the harsh reality that people with disabilities are often shunned because of their appearance or difference, of how people with differences are cast down or set aside or ignored.

I have seen it all of Christian's life. Not that it's every reaction, but it's definitely way too many. So I was a little overwhelmed to see an audience standing on their feet and cheering wildly for Kechi. I was pleasantly surprised at it. It was good for my mama heart. Of course, I thought to myself that maybe that same love from others applies to Christian, too.

I am noticing more and more normalization of disabilities and differences in outlets that will matter, outlets that will reach the masses and say without words that this is a normal part of our society and should be accepted.

Drew Lynch (www.drewlynch.com) is a comedian, and a hilarious one at that, who happens to have a stutter.  He is well known for cracking jokes at himself and allows others to feel okay to relax around someone with a disability and not feel that they have to be afraid of saying the wrong thing. Drew says all the things we have learned are inappropriate to say to or around people with disabilities and invites us to laugh about it. He invites people to laugh at the hilarity that his stutter brings about, because sometimes it is funny! That makes folks feel comfortable and I think, puts Drew in a light of just a normal guy, because he is.



The ABC TV show, Speechless, boasting the likes of Minni Driver in the cast, portrays the hilarious lives of the DiMeo family. The oldest son has cerebral palsy, is non verbal, and uses a wheel chair. He is a integral and main character of the show. The real life actor who plays JJ is actually disabled and not just acting disabled for the show. That's important. An actual disabled person was cast for the show.

Not only does the show portray JJ's life and give folks a (sort of) real life look at what it's like to have a disability, it also shows what other family members experience, or might experience, in a family where a member has a severe disability. The thing I love the most about it is that it shows the family being a family, doing typical and not so typical things, experiencing things that other families experience, and loving each other in ways that everyone can relate to. It shows a sort of over exaggerated idea of a family living with disability that makes everyone laugh and makes disability look normal, because it is. The over exaggeration makes me burst out laughing, because there is always an element of truth intertwined in the over exaggeration.

Once, Minnie Driver screamed at JJ's principal for not having wheel chair access to the school except through a back garbage ramp. She threw a total fit, threw things, got in people's faces, and of course, I laughed. It was meant to be funny. I can't say I've ever went as far as Minnie Driver did in the show, but I did come over a bed at nurse once. So, I was able to relate and laugh at the fact that I feel like Minnie Driver at times.

One show that I really love is "You Can't Ask That" which airs in Australia, but they did an episode on facial differences that was really great. They brought in people with facial differences and allowed people to anonymously ask questions that we would feel are not appropriate to ask to someone in person. The show sounds like it could take some bad turns, but it really does open up communication and create acceptance and understanding, in my opinion. The questions are out of curiosity and not meanness, and that is great! My good friend, Belinda Downes, was on that particular show and has good things to say about it! It opened up a platform for her to share about her life and living with a facial difference, in fact, one very similar to Christian's!



One of my FAVORITE things I have seen recently in the news is Shaholly Ayers and her modeling career. Shaholly was born without part of her right arm. She is beautiful and talented and does an amazing job as a model! She is not the traditional model, but she is real life and she is representing people with differences in a world where, just 20 years ago, they would have never been accepted or welcomed! The Today Show just did a feature on Shaholly that you can read here! 


Another show that comes to mind is The Good Doctor. I haven't seen the show, but apparently the premise is that a young boy with autism is a genius doctor who saves lives. I've heard the show is great. I simply don't have time to catch it. But, the main character of the show is a person with a disability who is portrayed in a positive light, and I think that's great. When Christian was born, the most you saw in the realm of disability on TV was Dr. House with his crutches or evil villains with facial disfigurements. We have come such a long way.

Something else that is amazing, that I'm not sure others realize is amazing, is that I actually got a book published no the topic of disability and that it's doing well. I have been told that "disability is a hard sell," so the fact that a publishing company took a chance on me and agreed to publish my book is amazing. I was able to write a book and have it in major outlets like Amazon and Books A Million on the topic of disability. Ten years ago, I probably never would've gotten a book deal. You can get a copy of Through the Eyes of Hope here! 

There were so many more examples I could list, but I will stop here for sake of time. So, why is all this important? Why have I spent my time showing you all these places in media where people with differences are being shown instead of hidden?

Because 1 in 5 people in the US has a disability. That is real life. Chances are you know someone with a disability. And those people are a normal, important, and integral part of our society. Yet for so long they have been massively underrepresented in media. What that has done is continue a stigma and narrative about disability that simply isn't true, and doesn't come from people who actually have disabilities.

Those of us in the disabled community need to be the ones telling the stories, sharing about what disability is like, and letting the world know what having a disability really means. Otherwise, we get kids being bullied for things they can't help. We get adults growing up thinking they somehow matter less than others because that's what society has said. We get an entire group of people, which encompasses both genders, every race, and every nationality, being underrepresented and spoke for instead of being allowed to speak for themselves. And mostly, what is said about them isn't true.

That is one of the reasons I speak out like I do. To not only change the narrative, but to also be the one speaking the narrative, instead of having someone speak it for me who doesn't have the experience or knowledge I have. Christian has given a beautiful glimpse into a world I was never a part of before him, the world of disability. It's not always easy. Life is hard, and having a disability is no exception to that, but it is beautiful. It is amazing most days. I am thankful for the perspective it has given me on life. I am thankful that I get to be a part of it in a small way.









Thursday, October 26, 2017

Make a Connection - Part 5 - Five Ways to Teach Your Child About People With Differences

If you have made it this far and followed my blog series on teaching your kids about people with differences, THANK YOU! I am honored that you have trusted me to walk you along this journey in helping your kids learn about differences!

This is a topic that's near and dear to my heart because I believe raising caring and compassionate kids means a more caring and compassionate future, a future that children and their children will have to live in! So, thank you!

If you have missed any of my posts in this series, you can start with part one here! 





Part Two is here!

Part Three is here!

Part Four is here!


Now, on to the final post of this series, Part 5!

Make a Connection

When children ask questions about differences, it's because they don't know or understand. They ask to get an answer, not to be cruel. I always assume kids are curious, not mean. That being said, sometimes, when you take the time to explain about a difference and give them a chance to ask questions, it still doesn't convey the whole picture.

The BIG picture here is understand AND acceptance, not just understanding. Explaining and answering questions about a difference gets across the message of understanding. Once they get an explanation, they will better understand a difference and what it is about, but how do we get across the message of acceptance?

I think there are two important parts to that puzzle. First, I think we should be willing to say so when a child says something that, even though not meant to be mean, can still hurt someone's feelings. If your child said someone had a big belly (Chandler totally did that to me the other day), you'd probably hush them because saying things like that can hurt someone's feelings, even if the person really does have a big belly. 😣😣😣 In the same way, it's okay to tell our kids that certain things are not okay to say, because it can hurt others, even if what they are saying is true.

You don't go up to everyone who is dressed in a way that you think is hideous and tell them so, so it's okay to say to your kids, "Hey! Saying that might hurt that person's feelings. If you'd like to ask them about their difference, we can go talk to them." I have totally said something similar to kids in public who say things that could hurt Christian's feelings. I always say it kindly though because they don't realize it will hurt his feelings. They aren't doing it to hurt him. They are just kids who say what they think. Kids will learn what kinds of things are appropriate or not when we teach them.

So, one step in the process is teaching kids how to talk kindly about differences. The next is making a connection. Sometimes kids are so fixated on a difference that they don't think about how a person might be more like them rather than different. I think making a connection between Christian and other kids is so important in the process of teaching acceptance. Because whether kids realize it or not, Christian is much more like them than he is different.

If I am talking to a child about Christian and notice that they are wearing a character shirt, I love to tell them that I like their shirt, and that Christian loves that character too. Sometimes I exaggerate. Occasionally, it's a character that Christian doesn't like at all. But I feel the importance of getting the child to realize that Christian is just a kid like them is far more important. I love to find things to talk about that connect Christian with the curious child. Sometimes, I will say that Christian is six and ask them their age to start a conversation about Christian and not just about his disability. Sometimes Christian will chime in and start talking about something and I will just cue into that and keep the conversation going where he wants it to go. Basically, diverting from the difference and to something the child can relate to.

It's not that his disability is off topic, but that it's not the focus of the conversation, or it shouldn't be.
So, I switch things around and make sure that we talk about things about Christian's personality and find ways to relate them to the other child.

I can see the wheels turning and the "aha" moment on kids' face when it starts to click. I can almost see the bridges being built, and that's the goal.

When talking to kids about differences, talking about the difference is important, but so is NOT talking about it. If the focus becomes so heavily fixated on the difference, the child will infer that it matters way more than it does. Make sure to talk about other things about the person to enforce their personhood, and try to make connections between the child and the person with the difference so that they can understand the person as a person who has likes and dislikes, ideas, opinions, and emotions, just like everyone else.

We are all more alike than we are different. People with differences have the same desires for friends and relationships as anyone else. They want to be treated kindly and it hurts them when they are not treated kindly. That is something we can all relate. I think it's important to not assume that children inherently know this, but that we take the time as their parents to tell them these things.




I hope you have enjoyed this series and again, I can't say thank you enough for following along! If you have had an opportunity to implement anything I have talked about in my series, please comment and let me know how it went! I'd love to hear! Thanks so, so much!!!!!!


Thursday, October 19, 2017

Five Ways to Teach Your Child About People With Differences - Part Four

Part Four - Five Ways To Teach Your Child About People With Differences - Differently Abled Etiquette

Thanks for joining me again for part four of my five part series! I can't believe we've almost made it through already!

If you are new to this series, you might want to go back and start with PART ONE. <---click here to read it.

If you have been following along, THANK YOU! I hope you are enjoying it!





People first Language is important. I cringe whenever I hear someone say "I know a Downs kid." I don't know why that one gets to me so much, but it does. "A person with Down's Syndrome" would be much more appropriate. In general, let's all teach our kids to just see the person before the disability. That's really the whole premise of People First Language. Put the person first. Not autistic child, rather, child with autism. If they get wrong, it's not the end of the world,  but like reminded them to say please and thank you, let's remind our kids what language is appropriate to use when referring to disabilities.

Unfortunately, there are still many adults who need help in this area. Once I was sitting in a law school class and a guy was asking the teacher a question. He was talking about ADA laws and began explaining how his wife is an architect who helps design hospitals. Sit down for what I'm about to tell you he said next. I wouldn't believe it myself if I hadn't heard it with my own ears. He said out loud for everyone to hear "My wife has to jump through hoops and hurdles to make sure that every blind, disabled, wheelchair ridden person can get through that hospital without help." He was complaining guys, that disabled people need to navigate a hospital. Let that sink in. He was complaining that a hospital has to be built so that PEOPLE WHO NEED TO USE SAID HOSPITAL can actually use it. My jaw dropped. I was shaking. Had I had the opportunity to say something to him, I would have. But the teacher apparently realized that we had a "wheel chair ridden person" in our class (I was sitting next to him) and quickly changed the topic and would not call on me with my hand raised. I probably had fire coming out my eyes and the teacher wasn't about to get that brawl started. haha! Person in a wheelchair would be fine, guys, but using the word "ridden" to describe anyone for anything is probably not going to fair well. Can you imagine someone calling me "curl ridden" because my hair is so curly? Not a compliment.

Teach children and please imitate yourself for them to see and just because it's the decent thing to do, how to speak to a person with a disability. Yes, do address polite and impolite things to say, but more so, teach your kids to talk TO a person with a difference. Make sure you are addressing the person with the difference yourself. It's okay if you already know they won't reply. You aren't addressing them to get a reply. You are addressing them because they are a human being worth addressing. Say hello. Ask them how they are. Call them by name if you know it. Look at them. Reach out a hand to shake theirs. Have a conversation just like you would with anyone else. It's perfectly okay, and actually polite to talk to people who can't verbalize back. Just don't be rude and expect a reply. Don't say arrogant things like "Aren't you going to say 'hi?'" or "Cat got your tongue?" Just be kind y'all. Not everyone can or wants to reply to you, and guess what, they don't owe you a reply. Just be kind.

I have several friends who have children who are completely non verbal. We ran into one in a waiting room at a therapy center one day, which is not unusual, and Chandler noticed a little boy about his age. He was excited for a play mate, so he ran up to this little boy and waved and said hi. The boy stopped only for a moment to look at Chandler, never said a word, never really made eye contact, and continued running around as little boys do. Chandler was confused. He looked at me and asked why that little boy didn't say hi to him. I explained that some people aren't able to talk, but they can hear you. I encouraged him to continue talking to this little boy, even if he didn't get a reply. I tried to convey not to expect a reply, but rather to be his friend anyways. It was confusing to Chandler. He is four. It shouldn't be confusing to an adult in the age of technology we have and how well know autism is at this current time.

Another incident happened not too long after that where Chandler said hello to a totally neurotypical child who either didn't hear him or chose to ignore him, and he asked me if that boy couldn't talk either! lol! Kids are watching and listening to us! That's for sure!

We must model the behaviors we want our kids to have, but not only that, we must also train them in those behaviors. Explain to them how they should treat people, or what to do if they encounter a person with a difference. Talk to them about it and practice it! We LOVE when moms bring their kids up to say hello to us, and that mom and I exchange knowing glances that communicate an understanding. She is trying to teach her kids something that I would never stand in the way of, and rather, am happy to help facilitate! If her kids learn what I hope they will learn by meeting Christian, learning how to approach and talk to him, then that's a win for them and us!

If you ever see us out in public and want to have a learning moment with your child, please holler at us. Christian gets excited when kids talk to him. He loves other kids. He can meet a child one time and he calls them his friends. He isn't annoyed and I am not bothered. Find us! We want to help you teach your kids about acceptance! It just means a better world for all of us! If I really am too busy to talk, I can let you know, and I'll be nice about it, but that hasn't happened yet. :)

Let's talk about some other things that are probably inappropriate etiquette. Just this week, we were at a store with the boys. We were walking around and came upon someone. That's a pretty normal thing to do in a store, see other people walking around ya know. Imagine my surprise when this lady, probably close to my own mother's age, loudly proclaimed an "ewwww!" I looked up as a reaction and saw that she was looking at Christian. I glared at her for a moment, then turned away so as not to curse at her. I needed a moment to process what had just happened and make sure I hadn't misunderstood. I asked Chris if I had just understood what happened correctly. He was so mad as well that he just said "yeah" and we both sort of just stood there in shock.

So many things ran through my mind in a matter of seconds. I thought about saying so many ugly things to her. Then I noticed that Christian was happily playing with a toy at  display and had no idea what had just happened. I decided that I wasn't sure I could say something to her without being ugly, and that I didn't want to make a scene to where Christian would now notice what had happened. I just walked away and as I did, heard her say loud enough for us to hear, "Oh, that spider toy scared me." She lied. She was covering herself instead of owning up to what she had just done, which made me even more angry, because then I knew that she totally realized that what she had done was unacceptable.

Y'all, I'm going to be honest. That hurt. A lot. It felt like a punch in the gut. And while I wanted to say lots of things to her, I still do, I am not going to say anything in anger. Was she old enough to know better? Oh yeah. Should she have owned up and apologized? Absolutely. Was she probably uneducated on disability or possibly hadn't encountered people with differences much? Probably.

So, grace upon grace and forgiveness seven times seventy. I'm not there yet.  I don't feel like I've forgiven her. I'm still angry. But I will not retaliate. Vengeance isn't mine anyways, nor do I wish her to "get what's coming to her." I am hurt, but I have learned that hurting her in return won't help. I hope that maybe she felt bad for what happened and went home and thought about it. I hope she resolves that next time she will do better. Screaming at her would not produce that result. Screaming at her would have probably have caused her to dig her heels in and stand by her actions, because that's what people do when you jump on them.

I wish I could have been calm enough to talk to her and explain that what she said was hurtful, but in that moment, I just couldn't. So, I did the next best thing. I just walked away and am praying that God will open her eyes to what she just doesn't know. I think He will.

If you start teaching your two year old appropriate behaviors and how to interact with people with differences now, this scenario won't play out when they are fifty, guys. Get your child involved with all kinds of people, not just typical peers. Not just the kids just like them. Your children will be better people for knowing people like my Christian. I promise. I am a better person for knowing him.

I wanted to end by listing a few ideas I had for getting your kids involved and teaching them about differences so that you can produce opportunities to teach.


  • Pull up photos on google of people with differences of all kinds and talk about them with your kids
  • Read books such as 
    • Special People, Special Ways by Arlene Maguire
    • Way To Go Alex by  Robin Pulver
    • Just Because by Rebecca Elliot
    • Zoom by Robert Munsch
    • A Very Special Critter by Gina Mayer
    • I See Without my Eyes by Mark Hayward
    • Don't Call Me Names: Learning To Understand Kids with Disabilities by C.W. Graham
    • And honestly, there are so many more that I couldn't list them all. Just google and you will find tons!
  • Take opportunities to talk to people with differences in public and model words and behaviors for your kids. 
  • Volunteer at a local rehabilitative therapy center like Special Kids, Inc. Allow your kids a chance to peer model for other kids, be around them, help them, and play with them. Many places are desperately looking for people to come play with the kids!
  • Have your children help you put together care packages for kids who are in the hospital local to you. Call your local children's hospital and ask what exactly the children there might want in a care package, find out the specifics for getting it to the hospital, and go for it! Meanwhile, talk to your kids about why you are doing it and how it will help the kids. 
  • Link up with folks on facebook with differences and have your kids write them letters or send cards. It gives kids a chance to discuss and process what they are thinking about, and possibly even ask questions they might be curious about. It gives them a chance to communicate with people with differences in a way where they can sit and think about what they are going to say beforehand, but also gives them a chance to really communicate with people with differences
If you have more ideas, please let me know in the comments. Someone reading this might see an idea what can really work for them!

So, I hope you enjoyed this post about etiquette. Please feel free to share it and spread the word about teaching kids about people with differences. I hope this blog series is making the world a little bit of a better place for Christian. :)