#GivingTuesday Bonus Post: Why CASANA?

  On this #GivingTuesday, a day dedicated to charity, I realize that some might be curious as to why we chose Childhood Apraxia of Speech Association of North America (CASANA) as our favorited charity this year.  After all, I explained why various KC baby charities were our charities of focus last year.

Because every baby deserves to be as content as baby Marshall

   Last year, I mentioned that Mads had somewhat of a speech delay.  That was a little bit of an understatement, at this time last year Marshall was virtually nonverbal and mainly communicated with some sign language, pointing, grunting, and physically showing us what he wanted.  

Like fighting superheroes

   We dealt with, what we thought at the time were tantrums- now we know the difference and these are 'behaviors', on the daily.  I could see the desperation in his eyes to be understood and how hard he would fight to try to form words but nothing but jibberish fall from his lips.  

Pictured here 'groping': a term for when they are trying to reach those words.  If you see a child doing this, ignore it.  Its made worse by nerves (being embarrassed when pointed out).

   I fought for a year to get him help.  Every alarm in my mama brain was going off that something was different here- that it was more than just a speech delay.

   Eventually we were told he was suspected of having Apraxia of speech (also known as Childhood Apraxia or Developmental Apraxia).  

   The short, official definition for Childhood Apraxia of Speech is "a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech."  

So what does that really mean?

   Like I said, that is the short and official definition.  

   

   For us, Apraxia meant Marshall being called "dummy", by a child who couldn't have been any older than six, at the playground because he couldn't respond with his name and could only grunt- resulting in silent tears and trying to hide his embarrassment.  It meant him having daily behaviors, and us being watched and judged by others assuming these were tantrums and we were bad parents for not spanking him to shut him up.  It meant begging our pediatrician for six months for help.  It meant Children's Mercy doing a full work up only to say "He definitely needs help...but we can't help you" because he isn't "disabled enough" due to his high ranking cognitive ability- despite his verbal abilities ranking at that of a 13 month old (and then being charged $800 because insurance doesn't cover it).  It meant explaining to people that he is intelligent, can understand all that is being said, he just can't communicate back; only to be met with confusion, blank stares, and sarcastic "oh sure, all kids are geniuses".  It meant asking "please just say that again" to your son as he so carefully tries to form words with desperation in his eyes- only for sadness to flood over him, realizing his own mother & father can't understand him.  It means advocating fiercely, like you never knew before.  It means literally crying to a case worker, begging that the state help him since he's been turned away from the private sector.  It means getting lucky with an amazing speech language pathologist who went home after her initial test and wrote pages to the state explaining why Marshall can't fall through the cracks one more time.  It means hearing him described as a mute and trying not to have an outburst at the jerk who coldly labeled your child who can so beautifully express himself in other forms.  It means getting turned down for play dates because they're "wanting a peer that is more at their level".  It means hiding in the bathroom during the fifth behavior of the day to cry and give yourself a pep talk on patience and support.  It means, once your child becomes very good at America Sign Language (ASL) he refuses to sign any longer because yet another person referred to it as "baby sign" making him self-conscious since he knows he's not a baby.  It means advocating LOUDLY for the silent.  It means iep meetings with the school district.  It means filling out paperwork acknowledging that they can so simply label your beautiful boy as a "disabled student".  It means being fearful of who you can trust to leave him with because everyone knows he can't say what happens around him or to him- or who will have the patience and understanding for him.  It means being irritated when other parents complain they're child won't "shut up" when you would kill to hear what's on your own child's mind.  It means wearing a fake smile when someone says "one day he will wake up and be totally normal" knowing they mean well, but your son isn't 'abnormal' now and saying he'll wake up one day 'fixed' totally disregards all of his hard work (and he works SO hard).  It means making short PSA videos on Instagram to raise awareness to particular facets of Apraxia.  It means correcting people when they laugh as your son desperately tries to form words, sometimes resulting in 'groping' (the lips moving to one side of the face like a stroke patient).  It means sometimes not knowing which 'community' you fit into, since he is considered 'not really handicapped' by some in the special needs community and 'not neurotypical' in the mainstream community.  It means having a pediatrician who has been practicing medicine for thirty-two years say "what's that?" when you say apraxia.  It means having your son want to stop trick or treating because he's heard "no candy until you say 'trick-or-treat'" for the umpteenth time.  It means hearing "he could have something worse" which is totally true and I'm so thankful for his health and cognitive ability- but in the same breath it is dismissive and brings an air of guilt.  It means so much more than I can properly list here.

   But none of this compares to what apraxia means to the child suffering in silence.  Imagine that you could understand everything said to you, see people younger than you easily speak words they don't even know the meaning of, and despite your best efforts not a person in the world understood you?  To be locked, alone, in a world of silence.  The frustration, self-consciousness, and heartbreak they suffer is easy to see.  They understand the cold words spoken, they understand that some underestimate them or consider them different.

   CASANA helps fund much needed research, raise awareness, help children get Speech Language Services, give tablets to children with severe cases so they can communicate, fund training to speech language pathologists because painfully few specialize in- or have proper training dealing with Apraxia.  That is why we picked this charity and champion it all year long- not just these short 25 Days or just on #GivingTuesday.  

   Because of CASANA, Apraxia doesn't have to mean the daily battles I listed above.  Kids can get the help and tools they need and parents can get the support and resources that they need.  Because of speech therapy, Marshall's vocabulary has exploded and behaviors have drastically declined.  His confidence is slowly building and his very hard work is paying off.  We still have a ways to go, but we have hope and a team now.  That is something every family with apraxia needs and deserves.

Because he deserves for his voice to be heard

   This cause really does mean the world to us.  It would be so meaningful if you would help us with our mission to give every child a voice.  The simplest and easiest way to make sure there are funds going to CASANA is to make the switch from 'regular' Amazon to Amazon Smile (https://smile.amazon.com) and select CASANA as your charity of choice.  Amazon Smile has all the same products, at all the same prices, as regular Amazon- BUT Amazon will donate a small percentage of your purchase to CASANA.  Spread the word, it is such an easy switch and costs you no money to help these children.  

Be a hero

   You can also donate directly to CASANA here or make apraxia related purchases to raise money and awareness at the same time here or here.  I even spotted a pretty sweet ornament!  If you donate to CASANA using any of the various forms I just listed (or find other legitimate ways) please email us at dingmanholidays@gmail.com!  We would love to hear from you- and if you take a screenshot of your Amazon purchase verification, donation directly to CASANA, etc feel free to give us your mailing address and we will send you a thank you card made with care from Marshall himself!  If snail mail isn't your thing, no worries as we can also send you a digital copy of a picture just for you.  

   We have been and continue to try to do our part constantly, for CASANA, on behalf of our son.  Please join us in our mission; because every child deserves a voice.  

1st Day: Bringing the North Pole Home

    On the first day, Marshall awoke to a winter wonderland.  I stayed up the night before stringing 120 cotton balls with fishing line and putting them up in his room to create the effect of forever falling snow.

    I woke Mads up just a bit earlier than usual so I could catch his reaction.  It was pure magic.

    He instantly started channeling Elsa from Frozen, jumping up and down on his bed, at some points just staring at me in disbelief, and twirling around under the falling flakes.  If he wasn't smiling profusely from ear to ear then his jaw was fallen to his chest in wonderment.

    My little guy was so ecstatic over this surprise that he couldn't make a sound.  Instead he looked right at me, bursting with excitement, and used ASL to sign "I love you". 

    That sweet gesture took my breath away.  A moment I truly treasure and I'm so grateful I caught it on camera to have forever.

    Just as I have done every year since beginning this tradition, I keep an eye out all year long for items for the upcoming Christmas season.  So, last summer, I bought the light for a fun North Pole solar light/ nightlight from the dollar store.  

    The craft itself was super easy to put together and cost only $2.50: $1 for the solar light and $1.50 for the specialty paint.  Otherwise we just used things from my craft and scrapbook drawers.

    After he got back from school, we sat down at his desk to complete the craft.  He loved putting it together and gluing the cotton 'snow' onto the foam base.  His absolute favorite part had to be sprinkling 'magic' (glitter) on the whole display.

    We set our new North Pole light to the side as I told Mads that we were going to have a special story time today.  I brought out one of his all time favorite ice cream treats: root beer floats!  He doesn't get sweets too often so this was a real treat indeed.  I then grabbed one of his nativity books, 'The Christmas Story' by Patricia A. Pingry, along with the small nativity scene we bought for Marshall last year from the- you guessed it- dollar store.  I explained how Jesus' birth is what we are celebrating at Christmas time.  As the figures on the book were mentioned, we would bring out the matching figurine.  It was a great way to keep him interested and actively learning the story.

    The true Marshall humor moment happened when I explained the word "savior".  I told him that Jesus came to save us all and Marshall quickly responded "No[t] for two people!" shaking his head.  He wouldn't elaborate further but two people sure aren't on Marshall's good side, apparently.

    Marshall thought we were done for the day as we walked his new nightlight to his room.  After all, what a great day it already turned out to be with a surprise flurry, a craft, and a special snack and story time!  But there was one final surprise in store for the kick off of December.  Remember how I just said we buy things all year long for our 25 days?  Well we picked this up for 70% off last July!

    Every Christmas Marshall has had his eye on this treasure.  It is usually pretty spendy for a seasonal toy, though we couldn't pass it up for 70% off plus $5 coupon last July.  Especially when it is the same exact set every year- it just cost a bit more in December.  So we decided to spoil our special guy and he couldn't have been more grateful.  He really deserves it after all his exceptionally hard work in speech therapy this past year.

    As soon as Mads saw it sitting on his bed, his eyes just lit up.  He rushed to the gift and just started chirping "Open, open?  Thank you, thank you!" over and over.  I quickly got it opened and set up and he has been playing with the North Pole play set and thanking me profusely ever since.

    The first day we brought a piece of the North Pole to Marshall and just like that the magic of the season was  upon us.  Marshall received a beautiful gift- but I, selfishly, get the best gift of all.  I get to experience Christmas through the bright, innocent eyes of a three year old.  What an incredible gift this season is, in more ways than one, but one of the best gifts of all is getting to go on these adventures with this sweet boy.  It is our sincere hope that each of you get at least a small piece of that gift here as well.  Welcome back.

Merry Christmas, Happy Holidays, Welcome Back!

   Well here we are, our third year of celebrating our holiday, our values, and our city throughout the Dingman 25 Days of Christmas!  I cannot believe it's already our third year, Marshall's fourth holiday season. 

    This year we got a bit of a jump on Christmas fun- the cooler weather last year seemed to have scared some KC event planners into moving up holiday joy.  So here's a quick photobomb of what we've done so far:

Decorating gingerbread cut outs at Christmas on the River's children's village 

He loves doing arts and crafts- especially
when it comes to ornaments 

We love walking around the historic downtown. Marshall and I have come a long ways since our first Christmas on the River 

The beautiful fireworks over the river

Marshall (whose silhouette is to the right) and I watched the firework show from his bedroom window.

Donating canned food to Harvesters (food shelf) for skating with Santa!

Marshall absolutely loves ice skating!

Marshall's mouth dropped when he saw
Santa skate up.  He was thrilled.

After skate 'coffee' a Dingman tradition.
As soon as we were off the ice, Mads
was chirping "coffee, coffee!"

We won a Golden Ticket to the tree lighting! Gift card, VIP parking, and goodie bag- yay!!

Marshall checking out the little library
at the Zona Rosa Tree Lighting/ Orange Wednesday

Some Kansas City favorites: The Grinch, Santa, and the Fairy Princess

We always love the lights and crowns of Zona at Christmas time

Marshall and Brad watching the tree light up for the
first time of the season

Marshall is excited about taking a chip break
from shopping

As we were leaving Zona, Brad received a phone call from the
customer service desk that he won an orange Wednesday
prize package!

    We aren't letting the cold of December freeze us out, we still have a full calendar of events lined up.  We are also incorporating something new this year!  With Marshall being a bit older and now understanding more about the world around him, we have decided to use the 25 days for not only fun but also learning.

     It is important to Brad and I that Marshall learns that different doesn't mean bad; that we as a collective people have more in common than differences.  I often hear and see people complaining about being greeted with "Happy Holidays" in lieu of "Merry Christmas".  I want Marshall to understand that there are more holidays celebrated in the winter season than Christmas and that the heart of those holidays have a lot in common with the values talked about during Christmas: family, thankfulness, charity, religion.

    Don't get me wrong, we are Catholic and are very active in our Christian faith-  Marshall was baptized at the same church I was and my dad before me.  The heart of the season for us is Jesus Christ, but let's occasionally explore the world and what others are celebrating.  What better way to find out what these holidays are about?  While the vast majority of our days will be traditional American, Kansas City, Christian Christmas celebrations, we will also 'travel' the world.  Celebrating Christmas a little differently in other nations and sometimes celebrating other religion's/ culture's winter holidays.  It is our hope that Marshall will learn new things and most of all learn that there is nothing to fear when wished a 'happy holiday'; his Chrismas can be just as in tact still as another's Hanukkah.  Of course food from around the world is involved, so if nothing else I hope that draws you in for more!

    Furthermore, we are also excited to be adding a few more days dedicated to charity!  Every year of Marshall getting older marks more opportunities for our family to give back.  We are so excited to be raising Mads to have a giving, loving heart.  This year our charity of focus is Childhood Apraxia of Speech Association of North America (CASANA)- though we will be donating to/ volunteering with other charities throughout the season as well.  We invite everyone to use Amazon Smile and choose CASANA as the charity for Amazon to donate to, or donate directly to CASANA.  Send a screenshot of your Amazon smile purchase- or donation to CASANA- to dingmanholidays@gmail.com with your mailing address and receive a handmade thank you card (or digital copy to your email if you choose) from our resident artist "Marshall Angelo".  We will talk more about the importance of CASANA in future posts.

    We are overwhelmed every year by the response we get from friends, family, and readers.  We hope you are entertained by our daily excitement and maybe even tuck some ideas away for your own family or community.

    So for now, get loaded up in that big red sleigh and grab your cocoa- the Dingman 25 is ready to go!  And I have a feeling the forecast is snow...