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.