Speak Up!

Thanks to the Childhood Apraxia of Speech Association of North America (CASANA), today is the very FIRST official Apraxia Awareness Day and will be recognized as such by the United States Congress! Woo hoo!  


CASANA is the only national nonprofit organization dedicated exclusively to children affected by apraxia of speech and their families. They serve both the parent and professional community. Their website - Apraxia-KIDS - is the largest collection of information on apraxia anywhere and was truly a lifesaver for me when Colten was first diagnosed.

Click here to read Colten's story or to find more information on Childhood Apraxia of Speech.
Donate.
Meet more "faces" of Apraxia.

Thanks for reading, for speaking up, and for all of your support over these last two years.  It means the world to me!  Love you!

xoxo

Jenny

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Stella and Dot Giveaway

Woot! Woot!

I am a big fan of Stella and Dot jewelry.  If money were no object, I'd buy the entire catalog.  True.  Story.  I'm also a big fan of giving away free stuff to my readers and supporting my fellow Apraxia warrior mamas.  Let's think of this as the proverbial two birds with one stone effect.

I "met"  Christine last summer when we "shared" an apartment for summer SPEAK with Nancy Kaufman.  When I say "met" I mean chatted online and when I say "shared" I mean she moved into the aparentment the day we moved out and I left her some TP and dishsoap.  Same.  Difference.  I am so grateful that the internet/social media/blogging has allowed me to "meet" so many other parents who are on this Apraxia journey with me.  I've made "friends" that I am know will last a lifetime and Christine is surely one of them.

But, enough of the all that lovey dovey stuff, let's get to the jewelry shall we?

Fantastic.

So the lovely Christine Roeske is giving away one of my personal favorites:   the gilded arrow bracelet (retail $39):

I have this bracelet and absolutely love it.  It looks adorable flying solo (see what I did there?) or hanging out with some friends.  Here is how I love to wear mine:

Arm Party from left to right: Groop Dealz, Balla Bling, Stella and Dot

Dying to get your hands on this puppy?

Enter here:

a Rafflecopter giveaway

Best of luck lovelies!

xoxo

Jenny

No Anybody See Me

Good Morning!

Things are pretty crazy over here at Casa del Sanzo.

I had three [work-related] events this weekend.  And now I need to write about each of them for my local blog Flower City Fashion (preferably before I leave for Florida TOMORROW...  Eeek!).

I'm also in my last week of my trial period as a personal shopper for Shop Your Way (Sears, Kmart, Lands End).  So I'm busting my hump big time for that too - hoping to get more people to sign up as my clients.  I'm really having a blast with it.  I finally figured out how to get paid to shop!  Ha!  And I love that it doesn't cost my clients a dime.  I help people shop.  Sears pays me.  The end.  Want to give it a try?  Sign up as my client here.  Then you can view some of the catalogs I put together featuring mom-on-the-go looks, girls night out must-haves and some great deals on active wear - but you need to be a client to see them!

Tomorrow I'm flying solo with the little beasties, so pray for me.  And if you see some crazy lady and her kids getting carted off a plane on the evening news, well, it's probably me.

The good news is (if we make it there without any arrests) I'll be in the Sunshine State for almost month with Grandma and Grandpa so I'll have some help with the beasties, which should translate into time to write.  Wooo-hooooo!

And last, but certainly not least, I want to leave you with a little story.

On Friday Colt wanted to wear his new shirt ($2 Kmart find) to school.  He was so excited to wear it.  He kept saying "No anybody see me."  I'm all:  "Yep - no one has seen this shirt before buddy." He's rolling his eyes at me.  He gets his shirt. And again says:  "No anybody see me."  I put it on him and he looks at me and asks:  "You see me?"  And then it hit me like a ton of bricks:  the shirt is camouflage!  He thinks he's invisible!!!!!  So I say "No!  Where'd you go?  You're blending right in."  And he replies:  "Mommy...I here.  Ca-o-fa!"  (camouflage)  HUGE smile on his face!

Can you see him?

Because of Colten's apraxia, it's hard to know what he understands and what he doesn't.  It was so cool to know that he understood what camouflage was.  We're only just now starting to have exchanges like this - and while they make me hopeful about his progress, they also make me realize all that I've missed; all the things that have been unsaid, unasked, unanswered.  But, we are moving forward - and thats the best direction to go.  I still feel so blessed to have been able to go to Michigan and work with Nancy Kaufman.  I credit her to where we are today and shudder at the thought of where we'd be without her.

Ok time to take Beastie #1 to school and go home and pack with Beastie #2.  Wish me luck!

xoxo

Jenny

Catching Up

Hey Kids!

I'm back from a whirlwind week in Michigan.  (Sorry for the only posting once this week, but it was all my schedule would allow).

Last Sunday, my mom and I loaded the boys in the van and headed out on an eight hour drive to Detroit.  It has been six months since our last visit to Michigan for Nancy Kaufman's Summer SPEAK and we decided it was time to head back so that Colten could be reassessed and receive some additional therapy at Kaufman Children's Center.  We also needed to have Cooper evaluated.  Oh, how I wish I could either a.  Move to Michigan  b.  Pick up the KCC and drop it in Rochester, NY.  It is so nice to get answers when uncertainty seems to loom around every corner.  It is so nice to know your child is getting EXACTLY the right treatment at the right time.  It's amazing to see how much progress he can make after only a four day intensive program there.  Ah-mazing.

I'll be posting about our trip in full detail later.  I'll give you all an update on Colten's new speech and occupational therapy goals and explain the issues that are beginning to emerge with Cooper.  Right now I'm still processing all of the information.  It is A LOT to digest.  All I have to say is God only knows we would be without Nancy Kaufman and the KCC.  I am so thankful that she came into our lives and that we have the means to make sure our child(ren) get the best care possible.

She gave me answers and hope when I had neither.  She helped me son find his voice.  She is a rockstar in my book.

It looks like we'll be making this trip every 6 months.  It seemed like the perfect amount of time to revamp Colt's program.  And as overwhelming as it is to think of being the mother of two special needs children, it's comforting to know that Cooper will be getting intervention as early as possible and that this time we will have a plan.  We can skip the months/years of uncertainty and move right to action.

All around, I think we are in a good place.  And I wouldn't trade these little beasties for the world:

We were eating pasta - maybe next time I should wipe my kid's face before I take his picture...

Back to regular programming on Monday!

Have a great weekend!

xoxo

Jenny

Settling In

How can it be Wednesday already?

Settling back into my "real" life isn't all that easy.  How does anyone with two (or more) children get anything done?  I haven't cooked a meal since I've been home.  Dinners have been as follows:  Taco Bell, Chinese, pizza delivery.  Unpacking, catching up on yard work, laundry, and blogging seems an almost impossible task.  And in the midst of all of that I'm trying to organize my junk for a garage sale in September.  Aaaaaahhhhhh!

If living in our Michigan apartment taught me anything, it is that we have way too much STUFF and need to de-clutter, unload, and sell STAT.  You would be AMAZED at what you DO NOT NEED.

Speaking of Michigan, the rest of our trip was just as wonderful as the start.  Colten continued to make progress and gain confidence.  I am in awe of his hard work and perseverance as he learns (and struggles) to speak.  Phrases are starting to pop out spontaneously and I can't believe how much he's grown.  We will be forever indebted to Nancy Kaufman and all the wonderful SLPs and OTs at her center.  I don't want to share too much about our experience, because, as I mentioned in an earlier post, I'm guest blogging for Tori Starling over at Jakes Journey.  I'm hoping to get that piece done before I leave for New Jersey next Friday.  Say a prayer for me.

Without further ado, here are some highlights from the rest of our trip.

You can't be married to a football coach and be living 40 minutes from Ann Arbor and not go see this:

Lucky for me, it worked out that we were in Ann Arbor for their annual Art Festival.  So I got to peruse some art, ogle some handmade jewelry, enjoy Oberon wheat beer from Kalamazoo, and people watch (by far the BEST part of any street fair).

Think:  Blue Moon but better.

We also went to the Hands On Children's Museum in Ann Arbor.  They have $5 admission on Thursday nights after 5pm.  What a great place!  So much to do!  Colten had a blast!

Don't worry that's not a real alligator.
The boy LOVED the magnetic fishing exhibit!

There was so much to do in the Detroit metro area, but we loved the Detroit Zoo so much we went twice!

Steve managed to snap a photo at the exact moment
that the wind changed and I got blasted with water.

Carousel

Dora and Diego 4D Aventure

Train Ride - Me and the Hubs

Coopy Scoops gets his Choo Choo on.

We fell in love with the people of Michigan.  What a warm, hospitable, and welcoming place!  We met the sweetest little family at the playground one day.  Colten and their daughter Cassidy hit it off, us parents were chatting, Aubry and Cooper were drooling at each other (literally).  It was such a nice way to spend the morning.  Then this sweet, sweet family invited us to Cassidy's third birthday party the next weekend at that very same park.  And if you know anything about the Sanzos you'll know we went.  I mean who misses a party?  I am still in awe of how nice it was for them to include us and how funny it was to introduce ourselves to their family as some random people they met at the park.  At first they thought we were kidding, but then we were like "no really..."  :)

Partying it up with Coopy.

Watching the birthday girl open presents.

There are so many things that I will miss about Michigan.  And while I won't miss the traffic on Orchard Lake Road, I'll miss just about everything else.  I'll miss our little apartment (even with the leak in the laundry room and the lack of internet).  I'll miss getting to spend every day with my husband and our sweet boys.  I'll miss never feeling overwhelmed because there was always someone there to help.  I'll miss Kaufman Children's Center being across the street.  I'll miss Colten being able to play with precious little boys who are just like him, and not like him all at the same time.  Even at three I think he learned how freeing it can be to realize that you are not alone, that there are other people just like you fighting hard, and harder, battles.  I'll miss Falafel King and Olga's.  I'll miss Whole Foods and $3 bottles of wine (and $12 maple syrup).  Lucky for Steve I drink WAY more wine than maple syrup!  I'll miss the amazing, strong mamas who became my instant friends.  Those ladies who are fighting alongside me in the trenches against Apraxia, who celebrated every word and validated every struggle.  Who I know in my heart of hearts will be my friends for life.

What an amazing trip it was.  What a blessing to be able to do this for our child.  I will cherish these three weeks forever, for they will always be, in my mind, the beginning of Colten's recovery.  And I know, I just know, we'll be back - and that my baby is going to be okay.

Love y'all,  (you can thank my new southern girlfriends for that)

xoxo

Jenny

Michigan Trip Update

Just a quick update today!  Colt is doing great in therapy (progress is slow but he's already saying new words and is much more confident imitating.)  His schedule is pretty intense, but we're doing fun stuff when we can.  He even found time to squirt down a grandma in white pants at the spray park (I was mortified).  Hey, that's what she gets for walking into the line of fire!

This little guy is six months old today: (crazy right?!)

He's getting big, but not too big to enjoy a impromptu dance party with mommy.  

Saturday we went to Greenfield Village.  Colt got to see a real roundhouse and ride on a steam engine.  He had a blast despite the heat and I enjoyed watching the model T's putter by while ragtime music filled the streets.  I am such a geek when it comes to that stuff!  I could have stayed all day!

Sunday I snuck in some "me time" and escaped for a MUCH NEEDED pedicure.  Check out this sad state of affairs:

I can't believe how fast time is passing by.  We're already into our second week.  It has been such a great experience.  We've fallen in love with Kaufman Children's Center and Michigan and we're thoroughly enjoying all the time we get to spend together as a family.  It's going to be hard to come home to our usual routines!  Cooper isn't babbling yet - so something tells me this won't be our last trip. Deja vu all over again!  At least we'll know what to expect, right?

What about you?  What are you up to on your summer vacation?

All Aboard for Word Camp!

Well kids, tomorrow we're off to the good ol' state of Michigan for three weeks!  (That's a long time).  Do you have any idea how much crap you need to pack for three weeks with two adults, a three year old and a five month old?  A buttload!  We're going to roll in there like the Griswolds with our van loaded to the hilt complete with luggage bubble on the roof rack. Oh yes, we have become those people.

Why the loooooooong trip you ask?

Well, do you have a minute?  I'm going to have to give you some background as to what has been going on in my life this passed year and a half.  My son Colten, who turned three in May, has apraxia.  According to CASANA, "Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.  What is often seen in a child with apraxia of speech is a wide gap between their receptive language abilities and expressive abilities. In other words, the child's ability to understand language (receptive ability) is broadly within normal limits, but his or her expressive speech is seriously deficient, absent, or severely unclear."

So my little muffin, cutie patootie that he is, is "normal" in every way except he can not speak like all his little friends can.  After over a year of intense therapy through Early Intervention, paying out of pocket for two private therapists, and doing countless hours of research and work with him at home, Colten has the vocabulary of a 16-18 month old.  He understands EVERYTHING but can not respond.  I can't imagine how frustrating it must be for him.  He can't ask a friend to play.  He can't tell his mommy if he has a bad dream.  I've never heard him tell me he loves me.  I've never heard him sing a song or tell a story.  He can't ask any questions (which is all most three year olds do) and he can't tell anyone how he feels.  In the words of his little friend Jody (who is also 3):  "Colten is a quiet boy, but he's really nice."

Colten 1st Time Bowling June 2012

At this point we don't have a prognosis.  Some kids get better and some kids don't.  Not knowing is really really hard.  But we are doing everything we can to give him the best shot possible.  

So, we'll be in Michigan for 3 weeks attending an intensive speech therapy program for Colten's apraxia.  We're calling it "Word Camp" and Colt is pretty excited.  I'm trying not to get my hopes too high, but am hopefully optimistic that this program will be exactly what he needs.

I'm not sure how much blogging I'll be able to do while we're there.  His schedule is pretty intense and I will be in all of the therapy sessions with him.  Down time will be spent exploring Michigan and giving his little mouth and brain a rest.  I don't anticipate a lot of "me time" to focus on my blog.  So hang tight, I know I haven't been consistent, but sometimes life has a bad habit of getting in the way of our plans.

Thanks for your patience, support, and for reading.

Thanks for giving me a place to be the more fun version of me that tends to get pushed aside to be mommy and therapist most of the time.  I started this blog as an outlet for myself; a place where I could write and think about something other than my son's disability, but sometimes these two worlds meet.  Like today.

Keep us in your prayers if you're the praying type... If you're not, send a little positive energy our way.

I know he must have so much to say, and hope one day he can tell me all those things he hasn't been able to.

xoxox

Jenny