Snapshots of Chaos: Living with Behavioral Disorders

"Kyle was caught writing in Sharpie on school property. This is technically vandalism, but since he's never done anything like this before..."

I felt sick, like I was going to vomit as I listened to the teacher on the other end of the phone.

I can hear you now, as you read this. "What's the big deal? All kids do something stupid like that at some point."

You're right. They do.

Here's what else he has done today alone:

-Gone to school on the coldest day of the year thus far in shorts and a t-shirt (left out year round since we do live in the south). He told me his jacket was in his bag. (Stupid Mom. Should've checked.) He told his teacher he wasn't wearing one because he doesn't have one.

-Decided he wanted the pizza (he can't eat) at school instead of what was in his lunchbox. Pitched a giant fit and proceeded to tell the school nurse, lunch lady, custodian, and anyone else in ear shot that his food was rotten. It was not. It was last night's leftovers.

-Blamed his missing homework on his baby brother eating it. I think it goes without saying that this was not true.

-Drew on his little brother with markers when he got home.

-Was told to take a bath. Painted the shower walls with shampoo instead.

-Was told to clean under his bed. Took four hours and Mommy finally went in and bagged everything up rather than continue to fight with him.

So, what's the big deal? The big deal is that he has a behavioral disorder, and because there are people out there who think a six year old can't have a behavioral disorder, I have to fight tooth and nail for him to get help. The big deal is that people who don't realize how hard this make it even harder by trying to excuse his behavior as a boy being a boy, a kid being a kid, or however they want to put it.

The big deal is that I'm exhausted. This was just today. Today alone. Let's not get into the last week, the last month, or God forbid the last year.

The big deal is that HE is exhausted. Do you know how hard it is for him to try and behave, and how much it takes out of him? I do. I've listened to him breakdown and call himself every name he can think of because he. Can't. Stop. Himself.

Life with a child who has a behavioral/neurological disorder (or more than one, as Kyle does) is hard,  on the child and the whole family. His siblings pick up bad habits from him. He's the kid no one wants to play with. His self-esteem and confidence take blow after blow as he is teased, made fun of, or just plain avoided for his uncontrollable behavior. His mother visibly cringes each time the school's name flashes across the caller ID.

Everyone wants stories of overcoming the odds. They want to hear about kids succeeding despite their problems. No one wants to talk about the hell that is living with these disorders on a daily basis, outside of those golden moments when they beat the odds.

The fact of the matter is, these kids and their families need you to support us during THESE times, during the exhaustion and the chaos, not just when everything is all rainbows and unicorns. We need you to pick us up now, when our kids are struggling and we are at our wit's end, so that we CAN have those moments in the sun.

So go find that mother who looks like she's one more phone call away from a mental breakdown and give her a hug. Go find that father who looks defeated and bring him a cup of coffee and listen to him talk. And encourage your kids to play with mine. He's a good boy, really. They all are. 

When He Can't Handle School

Where we live, school started about three and a half weeks ago. And Kyle's been doing...okay. He's had one especially bad day that resulted in a two hour screaming, crying, cursing meltdown in the middle of class, and two behavioral notices from PE, but other than that, it's just the usual "talking in class," "won't sit still," etc. run of the mill things that are part of raising a child with ADHD. So far, so good.

But I learned something last year that most, if not all, special needs families learn sooner or later: some days, he just can't handle school.

I don't mean he just doesn't want to go. This isn't a case of "Lazy Mom lets kid walk all over her, stay home from school, watch TV and eat ice cream all day."

Actually, I kind of wish that's all it was. At least that option involves ice cream.

No, this involved a 45 minute meltdown over...well, he woke up. And apparently, this was not a good thing. Meltdowns are rough on everyone involved, and when they start out the day in meltdown mode, the day does not get any better.

This leaves you with two choices: you can either send your child to school, keep your fingers crossed, throw some salt over your shoulder, say a few dozen prayers, and kiss a rabbit's foot...or, you can keep your child home and hope he's okay to attend tomorrow.

It's that second choice that I stick with when I just know he can't handle school. And it's days like today that make his IEP and my ability to communicate with his school so very, very important.

I was going to write this post about IEPs, parent rights, student rights, etc.

But I find that tonight, I am too exhausted from a day of wrangling meltdowning children, a teething baby, three sets of homework, a Cub Scout meeting, and straightening out a house that never seems to stay clean for longer than five minutes. So, tomorrow we'll talk IEPs. Tonight, we'll pray tomorrow he goes to school.

If you'll excuse me, I'm pretty sure the laundry I just folded unfolded itself. That, or one of my four year olds isn't as asleep as I thought he was.

ADHD/ODD: Myth VS Reality

How do you punish a child for behavior you know the child can't control? How do you look at your child and say, "I know you can't control yourself, and I know we're working on that, but you're grounded for a week for something you couldn't stop yourself from doing"? Do you punish them when you know they can't control it? Or do you let it slide? Or some grey area in the middle?

This is the conundrum faced by many families like mine, whose children have severe ADHD and ODD, or other behavioral issues. We face the stigma from society, too, of being "overly permissive parents" who "made" our kids into brats. And that stigma often makes our job even harder. We want our kids to understand that the world won't let them act the way they do, that the world won't be kind to them, and yet we want to change the world for them, so that they can be themselves without fear. And we start by teaching the world that they are wrong about our kids.

Brought to you by today's events in the life of  my autistic, severe ADHD and ODD six year old son, here are some myths about ADHD and ODD busted for you by one very tired, very worn down, very teary momma:

"He can totally control himself! He just doesn't WANT to!"

ADHD/ADD is a chemical imbalance in the brain. ODD is most likely caused by a combination of genetic, biological, and environmental factors. Think of it this way: imagine a car. Everything looks perfect, so you start driving down the road. You come to a stop light. It's red, so you go to stop the car and realize...there are no brakes. The brake pedal is there, but the brakes don't work. This is what it's like for children with ADHD and ODD: the set up is there, but the connections don't work. KNOWING they shouldn't do or say something doesn't equate to being able to STOP themselves.

ADHD isn't a big deal. So he's a little hyper- big whoop! 

This a problem much more complex than a little case of ants-in-the-pants. ADHD involves impairments in many areas, such as organization, focus, controlling their emotions, motivation, and memory. So yes, it IS a big deal.

Your kid doesn't have a behavioral disorder- he's just a brat.

Yes, there are children out there who have no behavioral disorders but act out very similarly to how most people understand kids with ADHD or ODD to behave. However, the difference between these children lies in the severity and patterns of behavior. For example, to be diagnosed with ODD, a child must:

1. often lose their temper
2. argue with adults/authority figures
3. actively defy or refuse to comply with rules and requests of adults/authority figures
4. deliberately annoy people
5. blame others for his or her own actions
6. be touchy or easily annoyed by others
7. often be angry and/or resentful
8. be spiteful and vindictive, often for reasons unknown to those around them

The child must display at least four of these behaviors on a regular basis for six consecutive months to be diagnosed with ODD, which is far more than a "typical" child. Rule of thumb: compare the behavior to typical children of that age range. If it is more intense, happens more often, etc., the child most likely has a behavior disorder like ODD. See a doctor for diagnosis/referral. 

ADHD isn't real. It was made up by Big Pharma to keep kids medicated.

So, here we can debunk at least three myths associated with ADHD. First: ADHD is indeed very real. So real, in fact, that it's not even a modern disorder. The first recorded case of anything resembling ADHD can be traced all the way back to 1775. For my fellow Americans out there, that means it even predates our Declaration of Independence. Please refer to my first and second points for more information on what ADHD entails. 

As to keeping kids medicated, let's talk about this in two parts. We'll start with the "kids" part. 

Eventually, children grow up, no matter how much we beg them not to (and I've found yelling, "IT'S A TRAP!" has little to no affect on the matter either). Children with ADHD grow up, too. They become...drum roll, please...ADULTS with ADHD. There's even such a thing as Adult-onset ADHD.

Moving on from there, let's talk about the medicated half of that phrase up there. While it's true that ADHD is commonly treated with medication, it's by no means the only treatment, nor are these kids being overly medicated. In fact, most studies agree the medicated ADHD children are receiving appropriate medication OR are actually under medicated.

So no, Big Pharma didn't invent ADHD, and it's not a made-up disease to keep lazy parents from having to do their jobs.

There's nothing wrong with your kid. You're just a bad parent.

This particular myth is what hurts families like mine the most. There are many people in the world afraid to have their child seen or to reveal that their child has a diagnosis of ADHD, ODD, or other behavioral disorders because of the amount of people who blame the parents. Before we move onto facts, let me just say: if you are one of those people shouting from the rooftops that these disorders don't exist and it's just bad parenting, I hope I'm able to help change your thinking, and also...please, for the love of what little sanity remains to parents like me...STOP!

Now then. Facts. Most research actually indicates that ADHD is genetic in nature, although neurological factors such as birth defects, brain damage, and certain infections can also lead to ADHD development. As for ODD, I mentioned earlier that ODD is most likely caused by a combination of genetic, biological, and environmental factors. Why did I say "most likely"? Well, like many disorders, we're only now beginning to understand ODD, and we're not yet sure what causes it. So does that mean bad parenting or a lack of parenting skills causes ODD? 

The short answer is, no. The long answer is, in certain dynamics, a lack of parenting skills can contribute to ODD symptoms, but alone, will not cause them. The other factors (genetic/biological) need to be in place for an environmental factor to have an affect, and you don't have to have an environmental factor to end up with ODD. 

In our case, there is a family history on one side of both ADHD and ODD. My kids were, forgive the dramatics, doomed from the start. I will be the first to admit that my being a young, inexperienced parent probably did contribute to how bad Kyle's ODD became, but by no means did having a young, inexperienced parent CAUSE Kyle to have ODD, or any other child like him. There's a difference between "cause" and "contributing effect." I take responsibility for CONTRIBUTING to Kyle's ODD with my youth and inexperience as a parent, and have sought out groups and support for parents with kids like him to learn how to help him and how to better my skills as a parent before it's too late to help him. And yes, there will be a time when it's too late. 

Speaking of being too late, because these disorders are best treated when kids are young, it is best to get them seen and diagnosed as soon as possible. Getting a diagnosis doesn't mean the child must be medicated. What it does mean is that the parents can have an answer for why their child acts the way they do, the child can receive understanding, and all parties can receive help from a trained professional to give the child the best shot at growing up to be a productive member of society. And society needs to recognize that these disorders exist, and early intervention is the best way to help, instead of shaming parents and judging young children.

When It's Not a Tantrum and You Need to Hush About My Kid

"I would NEVER let my child act like that!" claims Madam Holier-Than-Thou as your child rocks on the floor of the grocery store, hands clapped over his ears, tears streaming down his face. You feel tears well in your own eyes as you try frantically to gather your struggling child off the ground so you can hopefully calm him down, or leave if you absolutely must. Everything in you wants to scream at this woman, and all the others staring at you, judging you, judging your child, that there is a difference between what your child is doing and what they think your child is doing, but you're too exhausted to try, and too worn down to know where to start, so you just mumble "He's autistic" and keep going, praying they'll leave you alone.

Millions of parents the world over live this or similar scenarios every day. As the public opinion of the "Bratty Child" takes over, more and more people feel it's okay for them to say something to parents whose children are acting in a way they disagree with, without knowing the family at all. There's a huge difference between "Little Timmy didn't get his way" and "Little Timmy's brain is overloaded and he can't take the sensory input anymore."

A tantrum means Little Timmy isn't getting what he wants. You can stop the tantrum. Little Timmy wants a cookie in the grocery store and got told no? You can either give in or distract him, and Little Timmy will stop. He'll also watch you, waiting to see if you're paying attention to what he's doing. Little Timmy is being a kid- this is perfectly normal childhood behavior and most children, yes even the special needs ones, do this at some point or another.

A meltdown means Little Timmy doesn't care if you're paying attention or not. It's triggered by sensory overload- too much noise, too many people, lights that are too bright, etc. There's nothing you can do to stop it once it starts. You can remove the child from the situation, but the child is still going to be in meltdown mode until they themselves work it out. 

Outsiders often can't tell the difference, because they weren't taught, and because they don't know the child in question. It's one reason why many parents, myself included, despise taking our kids out- they're not giving us a hard time, they're HAVING a hard time, but Judgey McJudgeyFace over there thinks she knows best and thinks our kids are brats. So, the message our kids get over something they can't help? They're naughty children.

And the term "meltdown" is used by parents of NT children frequently to describe their children's tantrums. It  makes it harder for the world to understand what a true meltdown is when they see this word being used incorrectly. There's a meme on Facebook that I feel fits this perfectly:

So no, it wasn't a meltdown and you need to stop. In the same token, my kid didn't have a tantrum and you need to hush about my kid.

Kyle's Journey, in Honor of World Clubfoot Day 2016

If you visit our Facebook page, www.facebook.com/lifewithkyle, you'll find a video of Kyle talking about his clubfoot journey. 

Here, I'd like to share with you all the parts of his story he doesn't remember. This is a little collage I made to illustrate his journey and how far he has come since his birth. From left to right, each story illustrates a part of his journey.

Far left: Kyle's leg post op, January 2016. He had three metal screws sticking out of each leg (the third one is on the outside of his foot and not evidenced in the photo). He was fresh from a bilateral derotational osteotomy, wherein both his lower leg bones were surgically broken and rotated to further allow correction of his clubfeet. 

Middle, top left: Waiting to get his full length casts off, May 2014. This was post tendon transfer, which took place in April 2014.

Second Middle, top left: Kyle the day he was born, July 26, 2010. You can see his bowed legs, his clubfeet, and even his bluish tint from loss of oxygen. 

Far Right, top: Kyle just a few days ago, post castings, braces, AFOs, surgeries, etc. Nearly six years old, and at last, he stands straight. He does not and may never be physically able to do certain things, but oh my heart...look at those beautiful feet!

Far Left, bottom: Kyle and his bear Clover in the hospital December 2015. Just a day or two post BDO. 

Middle, bottom: Kyle awaiting surgery with Clover April 15, 2014. This was his tendon transfer.

Far right, top picture: Kyle in October 2011, post a failed tendon lengthening procedure. He was wearing full length casts, curled up on a chair in our living room, reading a book. Kid is tough as tough can be.
Far right, bottom picture: Kyle in August 2011, his first round of Ponsetti Method casts. 

Here, we have pictures of Kyle's feet sans casts and braces throughout the years. I actually made this last year (2015), so we're short a picture of this year's, but just scroll up: you'll see 'em. 

Top, left: Kyle and my mother, his Lala, when Kyle was about two months old or so. You can see his bowed legs and clubfeet.
Top, right: Kyle's feet, post tendon transfer 2014. 
Bottom, left: Kyle's feet, May 2015.
Bottom, right: Kyle's feet October 2015, the day we found out he would be having the derotational osteotomy after all.

We found out sometime in 2012 that Kai's feet are not the only things affected by his clubbed feet-they have affected his entire bone and muscle structure from his hips down. Not uncommon, but not something we were aware of before. The brown things on his legs here in this picture with his PCA were his knee immobilizers-meant to hold his legs straight and make him do a sort of robot walk that helps to strengthen his hips and his butt to correct his posture and help him walk more "normally." Sadly, this intervention failed. To this day, Kyle has problems with his hips and his posture which affect his ability to walk, run, jump, etc. as others do. 

Here we have ourselves another collage, containing some of the pictures I couldn't fit on the other collage.

Top, left: Kyle, October 2011. Some of his first Ponsetti Method casts. Although this method has become the most popular method (and is almost entirely non-surgical) for correcting clubfeet, not every child responds to it. Kyle was one of them.

Top, right: Kyle, March 2012, happily playing with his toys, despite the heavy casts weighing him down. 

Bottom, left: Rotator straps, or what I lovingly referred to as "Medieval torture devices." These were used to help fix his muscular and skeletal structure without the need for surgical intervention. As we all well know, that...did not go as planned.

Bottom, right: Kyle's feet, roughly February 2013. Rather than improving, his feet had at that point worsened. He was nearly back to where he was the day he was born. It was during that time frame that I realized it was time to push for a different  method, and came to accept (though terrified) that he would most likely need surgery.

In all, Kyle has had 82 casts spanning the first five years of his life. Because his first pediatrician believed his feet would "fix themselves," Kyle was not able to get treatment for his feet until he was five months old. Due to an insurance problem, he wasn't able to continue with treatment until after his first birthday. In part, these delays helped make the situation worse. Kyle didn't walk until the end of March, 2012. Even then, as most children do when they learn to walk, he was not steady or able to walk far until nearly a year later and after rigorous physical therapy. In addition to the casts, Kyle has gone through three rounds of what we call "BnB": boots and bars, in which a clubfoot child wears braces attached to a bar, used to keep the feet in the correct position for 23 hours out of the day to start, eventually going to twelve hour wear. He has had several pairs of AFOs, or what we've referred to as "braces," to help keep his feet in the correct position as he walks. Those failed miserably. 

Through it all, this child has let nothing hold him back. He is strong, he is determined, and he's faced almost everything with a smile on his face. To be his mother is an honor. To watch him grow and become a young man is a joy. To share him with all of you and see how much love this child receives humbles me. 

Our journey started nearly six years ago. His journey is not over yet. He will continue to see his ortho every six months for the foreseeable future. He may relapse, as he has in the past. But we have at last reached a point in his life where surgery may finally become a distant memory, and multiple rounds of casts and interventions a thing of the past. 

And without the love and support we have received over these six years, we would not have made it this far.

Thank you all for being you, and for loving my son as much as you all do. You're all wonderful. Pizza for all of you.

Mom's Tools for Staying Sane...ish

Whether you're like me- a work at home single parent-or not, we all need a break. But how, HOW do we get a break when our kids have issues typical kids don't? Having special needs kids can often make it hard to leave them with a sitter, so what do you do?

Some of us have family members our kids are comfortable with who can take them for short periods of time to give us a few hours' break (or maybe a night). Others don't- maybe they live too far away, maybe their family cannot handle their child's needs, maybe there's no family left. And even for those who have family to help out can't always turn to them for help- if you're in meltdown mode at noon and your family members are out of town, at work, or otherwise unable to help, what do you do???

Keeping in mind that my kids are higher functioning, so what works for us may not work for you, here's some ideas from Mom's Tools for Staying Sane...ish:

1. Pop in a movie the kids will watch, hand them a snack, and lock yourself in your room for the duration. Or until someone screams. Screaming should probably be dealt with by an adult. Probably.
2. Stay up an hour or two after the kids go to bed. Watch a movie. Drink some wine. Read a book. Take a hot shower.
3. If you're not a night owl, get up an hour or so before your kids (unless your kids are like mine and get up at 3 a.m. Then, by all means...sleep as long as you can!), and drink yourself some coffee or tea, watch the morning news, whatever.
4. Speaking of time to yourself, actually use that time for YOU. No, put down the laundry. Step AWAY from the sink. Don't you DARE lay out that kid's clothes yet! Bad, Mom, bad! Sit. No, really, SIT DOWN. Good Mom. Now, drink your coffee. Yes, it's hot. It's SUPPOSED to be hot.
5. Can't trust the kids in the living room alone? Okay, guys- quiet time! Everyone to your room! Yes, your OWN room. Because I don't trust you to let your brother live in one piece in the same room, that's why! Set a timer and no one is allowed out until that timer goes off. 
6. Separate. Bedtimes. Yes, really. The King goes to bed at 6:30. Taryn goes to bed at 7:30. Kyle goes to bed at 8:30. I get individual time with each kid so they are less likely to hang on me throughout the day, AND their bedtimes are early enough that staying up for a bit after they go to bed for myself won't kill me when they inevitably get up before the sun. 

Will those ideas work for everyone? Naturally not, but it's a starting point, at least. Every parent needs time to themselves. We didn't stop being ourselves just because we became parents. I have always needed time to myself- I get way more than just a bit cranky without it. What do you do to get time to yourself? 

To The Ones Who Came Before

Mother's Day is this weekend here in the US. And while we deliver our handmade gifts to mothers in our family and wish our mom friends a happy day, I'd like to take a moment to say thank you to a group of moms it's my pleasure to know, but have never met:

The ones who came before me.

To all the moms who came before me, thank you. Thank you for fighting to get our special needs kids the treatments they deserved. Thank you for fighting for their right to an education, their right to be raised at home as opposed to parents being pushed to put them in institutions.

Thank you to the moms who started the fight with insurance companies to make it easier for us to get our kids the coverage they need. Thank you for pushing for recognition of our kids' needs. Thank you for fighting for their right to the help they need.

Thank you to the moms who looked at the equipment given for their kids needs, whatever it was, and saying, "There has GOT to be an easier/better/more kid-friendly way to do this." Thank you for helping teach the world that our kids may have medical issues, but they are still, and deserve to be treated like, kids.

Your fight, your persistence, and your determination makes the path I travel much easier than it was when you started on it.

To the ones who will come after me, I hope our continued determination, persistence, and fight make your path even smoother than mine.

Happy Mother's Day.

I Saw You

I saw you today. I saw how flustered you were, how embarrassed you were.

Your precious little girl was screaming at the top of her lungs because she didn't understand that you had to pay for her toy before she could have it. She grabbed hold of the older woman behind her and tried to drag the woman towards the exit. Your eyes widened and you gave a horrified gasp as you raced after your daughter, apologizing to the woman as you gathered your child in your arms.

Another woman started in on that horrible rant. "Oh, give her to me! A day at my house and she'll never act like that again!"

"She's speech delayed," I heard you say. "She doesn't understand. She's in therapy. She's trying."

But the comments kept coming.

And I saw your exhaustion. I saw how tired you were, how worn down by this life. You needed a friend, a hug, and how I wish I could have provided that for you! But I was weighed down with my three children, our purchases, and their hyperactivity, because my son's birthday was today and they were hyper and excited. And I didn't say anything, and how I wish I had.

If I could go back half an hour to that store, I wouldn't let you leave without telling you. My oldest didn't talk until he was three. I still have days like the one you're having. My kids don't always get it either. And you're doing just fine. It's okay. Kids aren't meant to be perfect, anyways. No one is.

But mostly, I would like you to know I saw you.

Calm Down! It's Just a Little Blood

Today is World Hemophilia Day! And y'all are being treated to a double feature blog post today! Aren't you excited?

Hemophilia is used by non-professionals to describe an array of clotting disorders, because it's the most understood term, thanks to the British royal family's history of the disorder. In actuality, there are many different types of clotting disorders. Hemophilia A, Hemophilia B (Christmas Tree), Von Willebrand's Disease, Stuart-Prower, and many more are all part of the clotting disorders family.

Despite major advances over the years, an estimated 75% of people with hemophilia disorders around the world are still subject to inadequate care.

So how can you help?

Donate to the National Hemophilia Foundation.

Spread awareness by posting donation information in your place of business, participating in walks and runs, and sharing the NHF website. Heck, you can even share our VWD posts!

But, in our humble opinion, the most important thing you can do for clotting disorder sufferers...is donate your own blood. So many kids and adults like my kids need transfusions at some point, and there is never enough to go around, it seems. You're always told to donate to help in case of emergency. For many suffering from hemophilia and related disorders, a nosebleed can turn into a life or death emergency. So next time you see fliers for a blood drive or see that big red bus, donate, and help save a life.

The Importance of Being Kyle

Today, Sunday April 17, is World Hemophilia Day. Y'all are getting a double feature post today, because I've been meaning to write these for the last couple of days, but time and work got away from me. (Ah, the dangers of working from home!)

Today's first post, The Importance of Being Kyle.

Because World Hemophilia Day fell on a weekend this year, Mrs. K and I corresponded to set up something for Kyle to do on Friday to teach his classmates about his disorder. I was under the impression he would be speaking to his class alone.

My son, my beautiful, brave, intelligent son, stood up in front of not one, not two, but FOUR kindergarten classes to talk about life with a hemophilic disorder and what his disorder is. He explained to his classmates and peers what Von Willebrand's Disease is, how it affects his life, and what he does to help himself with it.

This is what we call self-advocacy. And it is so, so, SO important at any age.

Encouraging a child with any form of medical issue to speak up and speak out can go a long way towards helping them with their self-esteem, confidence, and in getting the help they need. We as parents and caregivers can only do so much. We might know they're hurt, but we don't know how badly. We may know they need mental help, but we don't know what goes on in their heads.

And we can't always be there to stop the bullying.

People fear what they don't understand, and one way to deal with fear is anger and bullying. Help them understand, and you remove the fear and thus the response to that fear. By teaching his classmates why he bleeds and bruises so easily and why he can't do all the same things they can do, Kyle helped them understand him. He helped them see that he is just like them, just a little...quirky.

Are you a parent or caregiver? How do you help your loved one self-advocate? If you have chronic health problems, how do you self-advocate? How old were you when you started? Let us know!

PECS: What Are They And Why Should We Bother?

It's been a couple of weeks since our last posting. Honestly, we had no idea what we wanted to talk about! The kids and I hash over things that happen throughout our day and talk about whether we should turn it into a blog post, or if it's just a blurb for our FB pages, or if it's just something that we can't be bothered with right now. Then, I ran across this gem: What are PECS and how do we use them? Should we bother or will it delay our child's speech even further? while I was bopping around on the ASD support group message boards. DING DING DING! Blog post!!!!!! :) Everyone here? Y'all ready for some learning? Here we go!

PECS stands for Picture Exchange Communication System. PECS was developed in 1985 as an alternative means of communication for children and adults with autism to "convey their thoughts and needs."  Individuals with autism often learn best with visuals. Accepting this, we must also accept that, for many on the spectrum, visual communication may often be easier than verbal communication. It can help convey their needs, avoid misunderstandings, and even help them gain an understanding of the neurotypical world around them through this ability to communicate.

Contrary to what you may think, there is little or no evidence (at least that I can find or have heard about) that using PECS will delay the development of your child's speech further. So long as you use the system properly and don't force speech on your child, you should be fine. If your child is going to develop language skills, they will. PECS can help facilitate that.

So, now we're onto "how on Earth do I use these things?" Here's how we did it, as per our beloved former speech therapist, T's, instructions:

• When starting out with PECS, don't simply hand your child the card. Say the word pictured in the card (i.e, I would hand Kyle the "juice" card and say "Juice." at the same time)
• As you and your child gain comfort with the PECS, your child will begin spontaneously bringing you the PEC representing what he/she needs. When they hand the card to you, respond verbally. (Example: Kyle would bring me the "ball" card. I would take it and respond, "You would like the ball? Okay, good job. Let's go find it.")
• As your child begins to grow in their communication skills, enhance their array of PECS. Add feelings cards, cards with words instead of pictures (or both on one card), etc. These days, Kyle has a host of PECS that have both words and a picture on them. (Yes, we still use PECS. Kyle can talk, but he has delays and bad days take a toll on his verbal skills.)

Something else I ran across on the message boards about PECS: the expense! The system sounds GREAT, many exhausted parents of nonverbal or delayed kids say, but the cards are so expensive!

Guys, here's a little secret we here at Life With Kyle keep fairly under wraps from the people who don't know us: we're BROKE. Money? What money? We can pay the bills and that's...um...ya, that's about it. It's been that way for years. These days, we have a tad bit of "spare" money after our living expenses are taken care of, but we still live  on a very tight budget, as do many, MANY other special needs families out there.

So what's a broke parent to do? How can we get in on this awesome system when we lack the funds to buy the cards?

Ya make 'em, folks. Ya make 'em. 

Microsoft Office has clip art. The internet has oodles of free images. Magazines, newspapers, the random ads many post offices deliver to your mailbox for free each week- all of these are a wealth of places to cut pictures of the various items you want to make a PEC for from. And the fact that you're reading this blog tells me you have access to the internet, either on the computer or on your smartphone. Most libraries (at least here in the US- I can't speak for other countries! Sorry!) will let you print out pages for ten cents a page, so if you don't have access to a computer at home, head over to your local library and print away. You can even personalize them, if you have the equipment, by taking pictures with your phone or camera of various items in your house and then printing THOSE out. You can then tape, magnet, or velcro your homemade PECS to anything in your house, or take a page from our book and make a binder full of them! We separated ours into categories: food, drinks, toys, clothes, feelings, etc. 

Do you use PECS? Did you make them or buy them? If you bought them, share the links to where you got them! If you made yours, share a picture! Share the links you used to make them! Share your ideas :) And remember: be respectful and courteous, please! My kids DO read this and they ARE young, after all!

When His Dreams Are Bigger Than He Is

"I want to be a hunter when I grow up, Mommy! And a doctor and a singer man and a house builder man and a fireman and a policeman and a artist! I want to have lots of jobs when I grow up, Mom!"

At five years old, Kyle has a lot of dreams. He wants to do all sorts of things when he's older. And while I believe in him and support his dreams, I don't have the heart to tell him I don't know if he'll be able to. 

So what's a mom to do when his dreams are bigger than he is?

I could sit him down and have a long talk with him about how his medical problems and his mental issues and his cognitive delays mean he probably won't be able to do a lot of those things.

I could break his heart.

Or I could swallow the lump in my throat and blink back the tears and smile my biggest, brightest smile at him and say, "Of course, honey. That sounds GREAT!" 

Five years of raising Kyle has taught me he is an overcomer. I can't see it now, but maybe twenty years from now, he will be one or more of the things he wants to be.

Meanwhile, I'll just be happy if he remembers to turn in his homework on Monday.

Three Steps Forward, Two Steps Back

During our hiatus, on December 1, 2015, Kyle had a bilateral derotational osteotomy. For those playing along at home who don't speak orthopedics, this is a fancy way of saying he had the tibia bones in his legs (lower leg bones) surgically rotated to the correct positioning. Kyle had what is known as tibial torsion in both legs (bilateral). Now, tibial torsion is very common in young children. It's what gives toddler legs their bowed appearance. Most children either totally work out their torsion by about three years old or have had their torsion begin to improve to a degree that their doctor isn't concerned. Kyle's legs had been rotated to -15 and +5 degrees consistently since he was first looked at for it when he was 3 years old. They had never improved, and it was to the point where, after all the other procedures, interventions, and therapies we'd done to correct his clubbed feet, we knew the continuing issue with correcting his feet and thus enabling him to walk more correctly was the tibia torsion issue. Basically, your bones hold the muscles in place. If your bones aren't correctly positioned, your muscles, tendons, etc. won't be either. Untwist the bones and the rest will follow, essentially.

The day after his surgery found Kyle in thigh high casts (rainbow colored, because of course) and unable to get around on his own. The King was born on November 10, 2015 by c-section. I was still in recovery and not able to assist Kyle in and out of bed. We were still in the hospital. Kyle was a two person lift. His nurse, M, didn't wait for assistance and dropped him in full view of myself, my mother, and Kyle's doctor, who were speaking about his expected course of recovery and projected release at the time.

This left one of the pins in Kyle's left leg, which was holding his surgically broken bones together, bent.

To say this didn't bode well is an understatement.

Fast forward three months to today.

I took the kids to the park after we picked Kyle up from school. I had noticed a tendency for Kyle's lower legs to look red and splotchy since he came out of his casts about three weeks ago. Today, at the park, they were red, splotchy, swollen, and he was complaining of pain. To add insult to injury, the poor child had an asthma attack. Guess what we didn't have?

If you said a new inhaler, you're right.

So, I called his doctor and rushed him in to see her. (He has six doctors. I'm currently talking about Dr. C, his pediatrician, who is much closer than our beloved Dr. F, the orthopedist, although he did receive a phone call from both me and Dr. C.) After consulting and discussing and congratulating Mom for taking pictures of his legs, which already looked much better by the time I'd driven him the half hour from our town to her office (she is located in the town we used to live in and we adore her. When you're a special needs parent, you do what you can not to lose good doctors. I'll drive half an hour quite happily to see her.), so the pictures I'd taken allowed Dr. C to see what I had been seeing when I called her office to come in, we have figured out what's going on.

Kyle is allergic to pollen, first off. Let's clear that up. And it's spring, so pollen is everywhere.

Anyways. Kyle's legs were red, splotchy, and swollen because his circulation is absolute crap in his legs now. Dr. C believes the asthma attack, which he hasn't had in months, was triggered by a combination of pollen allergy and being too hot- although it was 80 outside and the child was bright red from the heat, he wasn't sweating at all. His sweat glands are damaged from all this.

Although Kyle has finally gotten his wish (aside from the scars and a lurching gait, he at last looks more like his friends), this puts us behind again. Three steps forward, two steps back. He looks better, but he now has chronic issues he didn't have before that we can't do much about.

Kyle says, "It's okay, Mom. I don't mind. More stuff to teach my friends about!" (That would be all of you, by the by. Kyle calls each and every one of you, most of whom he doesn't know, his friends.)

This entry has been read to and approved by Kyle.

Kyle, the week before Christmas, shared by his request

So Exactly What Happened?

So, as promised in my posting two days ago, Exactly What Happened? Why did I stop writing this blog? Where did we go for over a year?

The readers who know us personally  know exactly what happened, but those of you who follow us from around the world that have never personally met us have no idea why one day, we were here, and the next day...nothing for over a year.

Right before my final posting over a year ago, Mom met someone. And that someone...well, let's just say Mom should really just stay out of the dating game, because Mom is just NOT good at it.

As a result of that relationship, The Crew was left with no income because Mom lost her job as a result of "someone's" issues, and left homeless because Mom had to leave that relationship and had no income to pay the bills with anyways. We ended up living in a hotel for a little while before landing somewhat on our feet again in a town about twenty minutes from where we had been, with the help of family and friends.

Also as a result of that relationship, we welcomed The King into the world on November 10, 2015. Kai and Taryn are now the proud older brothers of a bubbly, healthy little boy.

During this "missing" year from our blog, we had a lot of other things happen, too.

Taryn was diagnosed with bipolar disorder and hypoglycemia. He is also undergoing genetic testing at the moment.

Kai underwent that tibial torsion surgery on December 1, 2015. We had a lot of ups and downs with that, which you can read about on our FB page, Life With Kyle, which we started in October 2015.

Taryn and I were in a car accident on December 22, 2015. We were hit by a semi truck on our way to Taryn's geneticist. We're still in recovery from that, with Mom in physical therapy and potentially needing further help with my shoulder and back.

Kai is now in Kindergarten and doing very well. His teacher and I communicate on a near-daily basis via notes in his agenda back and forth, and I adore the staff at his school. Mr. F, his assistant Principal, is one of Kai's all time favorite people. Mrs. K, his teacher, is wonderful with him. Kai has even made two very close friends, K and M. He's also learning to advocate for himself and not afraid to talk to people about his issues. He is still very sensitive about his scars, and struggles to understand what he's done when his classmates get upset with him- he has very little understanding of social rules and acceptable behavior, and this often causes problems for him with his peers. He's also been diagnosed with Oppositional Defiance Disorder (ODD) and formally diagnosed and in treatment for ADHD, and we've found he's dyslexic, which has caused some ridicule in class from his peers as he struggles with things they find easy. Kai is mainstreamed, as we felt it would be a disservice to him to stick him in special ed- he struggles, but is too bright for the work he would receive in a special ed setting.

Taryn was given developmental and intelligence testing in October and was scored in the top 2% of the population for his age group intelligence-wise. He's very bright and I look forward to his school experience starting next year.

The King is a bubbly, healthy baby who is the unequivocal ruler of the house at the moment. He is developing on target, and is wonderfully healthy. He is Mom's first full-term baby and the first to not need an extended hospital stay. He was released when I was, and has only needed the usual well-child check ups. Even at just barely four months old, The King has a personality and is lots of fun!

So, now those of you who don't personally know us are all caught up on just where in the heck we went for over a year except for the things that I don't feel comfortable discussing. (We're very open, but there are some things that are not up for discussion.) We don't plan to disappear again! We're very excited to welcome you to the new edition of our family blog and hope you enjoy the journey! 

A Rant on Cures

So, it's been a while. A long while. And I promise I will explain that.

Next posting.

This posting, I'm going to take a second and just...rant. I'm going to rant because the subject I'm going to rant about really, really, REALLY bothers me.

BLEACH ENEMAS TO CURE AUTISM.

Okay, first of all, I am NOT a supporter of autism as a disease. I do not view it as a disease- you cannot catch autism, you cannot spread autism if you are autistic, you cannot surgically fix or remove autism, etc. It does not fit the parameters of a disease. Autism is a DISORDER. A neurological DISORDER, not a DISEASE. As such, I don't believe it can be cured. I believe each autistic individual should be given all the tools they can possibly receive to lead the fullest, most successful they as individuals are capable of. I believe that no autistic person should be told they can't be independent or succeed at their own goals in their own time simply because of autism. (Naturally, there are autistic individuals who cannot live independently, but I believe that independence should be encouraged to each individual's specific abilities.)

Those tools, however, should NOT include cleaning agents as enemas! In what world does that make sense!?

"Bleach? You mean, like the stuff I use to clean my floors and make my whites whiter? Insert it into my child's body to cure them of a neurological disorder? That sounds like a GREAT idea! Here, take my money!"

The hell, guys????? Come on! I understand, I do, I really truly do, that there are parents out there whose children are non-verbal, who cannot self-care, who are aggressive, who encapsulate the worst traits of autism as seen in the media and described by books and articles- and I get that these parents are desperate to help their children. My  heart hurts for them, because Kai WAS that kid. He's STILL that kid in many ways.

But seriously, how on EARTH does inserting a cleaning agent into your child's body get even momentary consideration!?

There are so many other ways to help. There are controversial things, like ABA. There are proven therapies, like music therapy, occupational therapy, even art therapy. There are medications for those who are open to them that can help with the aggression. There are other forms of communication you can (admittedly pain-stakingly) help your child learn to use besides their voice! (As special as that is; as mom to a formerly non-verbal child, I totally get that!)

Please, people, PLEASE, for the love of whatever you hold to be holy, STOP INSERTING CLEANING AGENTS INTO YOUR CHILD'S BODY IN HOPES OF CURING THEM!

That is all.