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!