Chit Chat

I have said it before and I will say it again.

Right.
Here.

If we had not found Nancy Kaufman and Kaufman Children's Center, Luke would have not been diagnosed with Childhood Apraxia of Speech until 3 years old (or later) even though CAS was suspected by an SLP during an evaluation by Babies Can't Wait (Georgia's Early Intervention) when Luke was 18 months old.

ASHA (American Speech and Hearing Association) suggests that SLPs wait until after the age of 3 to diagnose CAS, so most SLPs won't.

But Nancy Kaufman isn't most SLPs.

She. Is. The. Best.
THE Childhood Apraxia of Speech Queen.
I even made her a plate that says it.

Although she was a
little hesitant to display it, concerned that parents would think she was self proclaiming it....I am proud that it is still in her office. Almost 2 and a half years after we presented it to her ;)

This week marked a year since we had been to the KCC for intensive therapy.

On Monday, April 28, 2013 Luke opened the doors of the KCC (for what would be our 6th trip since 2010) and even though he had just gotten out of his mouth that he was going to tell Nancy thank you.......in true Luke fashion, he announced "I don't need to see Nancy Kaufman. I can talk now."

I wasn't sure how Nancy would take his news, but she didn't miss a beat.

She agreed that he didn't need her anymore and she was beaming with a real maternal pride. Tears filled her eyes and mine as we watched Luke, the now 4 and a half year old, chattering away.

After catching up, talking about our therapy schedule and the week's goals....Nancy went to work her magic on more children.

Overcomer

I read this and was fine with it until I got to the last sentence. 

It stung.

My face turned red.

My body hot.

Tears swelled in my eyes.

I think even though my mind knows there isn't a cure, my heart wants a cure. 

I want someone to say it's done. 

Not just residual.

Gone. 

Finished. 

Over.

Apraxia can not be cured; only overcome.

I had to sit and let those words sink in.

I am a firm believer that while Childhood Apraxia of Speech may not be cureable; my child was and is still being healed. 

Luke can speak. 

He can tell us his wants.

His needs.

His thoughts.

His dreams.

His opinions. (And boy, does Luke have some strong opinions....wonder where he gets that from?!?)

He is rarely quiet.

It is everything I had wished, hoped and prayed for. 

And while I am pained by the words incureable. 

I hold on to the truth that I know. 

He is an overcomer. 

He has already overcome so much. 

There is more to come. 

And I will be cheering him on the whole way, louder than anyone else.

Join us in celebrating Luke's voice and all of the other precious children who have been diagnosed with this rare speech disorder known as Childhood Apraxia of Speech. 

May 14th is the 2nd National Apraxia Awareness Day. 

We ask that you wear blue and white to honor our little hero and all of the others working on their "roar".

http://fgr.am/f/A4GdsUmryU

Use the hashtags #apraxiaawareness and #wearblueforluke when posting pics or posts on social media ;) 

CHAMP Camp Parent Guide

That bio.

http://maggieandluke.blogspot.com/2014/04/writer-block.html?m=1

Well it's in the new George Washington University CHAMP Camp Parent Guide. 

Can't wait to share what we have learned on our apraxia journey with others!

See :) 

Grateful to play a little part in giving back to a camp that has been our home for 2 summers.

Gearing up for Apraxia Awareness Day

May 14th is officially Apraxia Awareness Day nationally and in our state of Georgia.

Huge SHOUTOUT to Rep. Amy Alexander Carter for making this resolution happen again this year!

JOIN our family....

in celebrating Luke 

and all of the other precious children finding their voices. 

We are encouraging YOU to wear blue and white on May 14th.

That's Wednesday.

I already have my shirt ;)

The donations raised by it will help to fund our SLPs journey to CASANA's apraxia boot camp.

I vowed to be Luke's voice until he found his; and thankfully with God's grace, direction, provision and healing touch...we are there. 

Luke can speak. He is understood by others. And I must tell you....it is completely a dream come true. 

Little tokens of appreciation to our awesome SLPs

A pic from last year's 1st Apraxia Awareness Day

What are YOU planning to do to show your support? 

We made some ribbons, fliers, brochures and are working on a tri-board.

You've come a long way baby and while we support you all year long; we will especially be celebrating your hard work and success on May 14th.

All. 

Day. 

Long.

It Happened. Be Careful What You Wish For.

Guess who went to "time out" for talking too much today? 

You guessed it. 

That cutie patootie up there. 

The one and only.

I shouldn't have giggled.

I shouldn't have smirked. 

But by golly, I wished for this day. 

Even had it written about in our local paper. (VDT Feb. 2011)

And the moral of this story is....dreams do come true. 

Dream big friends.

Dream. 

B....I....G......

BIG!!!!

Apraxia Awareness Day 2014 and Better Speech and Hearing Month

http://flipagram.com/f/A4GdsUmryU

Mark your calendars. Apraxia Awareness Day will be May 14th.

We will be meeting with Rep. Amy Alexander Carter to receive the 2nd (ever) resolution of the state of Georgia's Apraxia Awareness Day.  

The resolution will be given to Luke at 'more than words' Pediatric RiteCare Clinic on May 4th. 

Last year was the 1st day of its' kind and we were so blessed to have played a tiny part in bringing it to our state.

http://maggieandluke.blogspot.com/2013_05_01_archive.html?m=0

http://maggieandluke.blogspot.com/2013/05/celebrating-luke-on-apraxia-awareness.html?m=0

http://maggieandluke.blogspot.com/2013/05/childhood-apraxia-of-speech-awareness.html?m=0

Please join us at the Better Speech and Hearing event and by wearing blue and white on May 14th. 

I made the little flipagram video at the top of this page to celebrate our Luke and all of his MAJOR accomplishments. 

Please take a minute to watch it. 

Luke most definitely ROARS. 

And we are ever so grateful.

To God be the Glory!!!

Georgia Proclaims May 14th, 2013 the First Childhood Apraxia of Speech Awareness Day

 

When I heard that there was going to be a NATIONAL Childhood Apraxia of Speech Day,

I knew that we had to have it proclaimed in our state, too. 

 

I reached out to several lawmakers in Georgia and

thankfully Rep. Amy A. Carter answered the call.  

 

A resolution declared that  May 14, 2013 would be known as

Childhood Apraxia of Speech Awareness Day

for the first time ever.

 

If you don't know what CAS is, please read this post.

http://www.maggieandluke.blogspot.com/2010/11/what-is-childhood-apraxia-of-speech.html

 

 

 

 

 

 

 

 

I can't think of a better way to end Better Hearing and Speech month. 

 

 

Thank you Rep. Carter for always lending an ear, as well as a hand

and for being a voice for those children who haven't found their own voice yet. 

 

 

Additional posts about Apraxia and Apraxia Awareness can be found at http://www.maggieandluke.blogspot.com/2013/05/celebrating-luke-on-apraxia-awareness.html

http://www.maggieandluke.blogspot.com/2013/05/childhood-apraxia-of-speech-awareness.html

 

 

 

Luke and his private SLP, Allison Keeler of More Than Words
Pediatric Rite Care Clinic on the 1st CAS Awareness Day,
May 14, 2013. 

 

 

 

Celebrating Luke on Apraxia Awareness Day

This year is the first EVER Childhood Apraxia of Speech Awareness Day (May 14th).

All of the other apraxia moms were posting pics of their kids with text announcing their support for their children and I couldn't figure out how to make the "poster picture".

After attempting and failing numerous times, I was about to give in.

But then I thought about how hard Luke works on a daily basis just to make a sound, let alone how difficult it is for him to produce a word or string those words together to form a sentence. 

And then I knew I couldn't give in that easily.

One thing that apraxia has definitely taught me is to ask for help. 

We certainly wouldn't have gotten this far in our journey without the help of others. 

I pleaded (not really, I just asked...but pleaded reads so much better) with one of the apraxia mamas I met on this journey to make one for me. Without any hesitation, she agreed and produced this most precious poster for us.

Please join us in celebrating Luke's success in fighting Apraxia. 

Check out the new website www.unlockinglukesvoice.org  We will still fundraise through Luke's church fund, but have now set up an easier paypal option. 

You see, we are not done with this journey, but we can definitely see remarkable progress. So we keep keeping on, putting one foot in front of the other.

But today, we will stop and celebrate all of the accomplishments Luke has made and how far we have come in this journey. 

Luke is our superhero.


Signs of Apraxia (from the American Speech-Language-Hearing Association):

A Very Young Child:
· Does not coo or babble as an infant
· First words are late, and they may be missing sounds
· Only a few different consonant and vowel sounds
· Problems combining sounds; may show long pauses between sounds
· Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
· May have problems eating

An Older Child
· Makes inconsistent sound errors that are not the result of immaturity
· Can understand language much better than he or she can talk
· Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech
· May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
· Has more difficulty saying longer words or phrases clearly than shorter ones
· Appears to have more difficulty when he or she is anxious
· Is hard to understand, especially for an unfamiliar listener
· Sounds choppy, monotonous, or stresses the wrong syllable or word

Childhood Apraxia of Speech Awareness Day~May 14

May 14, 2013 marks the first annual Childhood Apraxia of Speech Awareness Day, during which the CASANA (Childhood Apraxia of Speech Association of North America) organization is attempting to raise local, state and national awareness about Childhood Apraxia of Speech, a particularly difficult, persistent, and severe neurological speech disorder in youngsters. http://www.apraxia-kids.org/press-release-casana-celebrates-the-first-ever-apraxia-awareness-day-on-may-14/

As the mother of a young child affected by Childhood Apraxia of Speech, I am passionate about spreading CAS awareness and feel compelled to advocate for their specific needs as well as acceptance.

It is my hope that you will join us in raising Apraxia Awareness during Better Hearing and Speech month by celebrating Childhood Apraxia of Speech Awareness Day on May 14, 2013. 

Together, we can speak for those without a voice.

(Background)

CAS causes affected children to have extreme difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate that are necessary in producing clear, intelligible speech. It is among the most severe of speech and communication problems in children.

While the act of learning to speak comes effortlessly to most children, those with apraxia endure an incredible and lengthy struggle. Although not life threatening, the disorder is life altering. Families are left to cope with the emotional, physical, and financial challenges of having a child diagnosed with CAS.

Every child should be afforded their best opportunity to develop speech. With early intervention and apraxia specific therapy, most children with CAS will learn to communicate with their own voices. These children, as well as their families, deserve our highest respect for their effort, determination and resilience in the face of such obstacles.

Childhood Apraxia of Speech Day is a time to raise awareness for CAS, recognize the families affected by this motor planning disorder and support therapists serving CAS affected patients. May 14th is the perfect time to support the goals of Better Hearing and Speech Month and raise Apraxia Awareness. 

Thank you in advance for supporting Childhood Apraxia of Speech Awareness Day. 

www.unlockinglukesvoice.org

GWU....We <3 You!

Luke was accepted to GWU CHAMP Camp and we couldn't be more excited.

 

 

 Last year, he was able to attend the first CHildhood Apraxia and Motor Planning Camp at GWU's Speech and Hearing Clinic in Washington, DC.

 

 

 

 

It was a great experience for Luke and for our family.

We met some friends, made some memories, and learned more about apraxia and motor planning issues in the parent education classes that were offered. 

 

 

 

 

 

 

Can't wait to get back to DC and

"show off" all that Luke has accomplished this year

and hopefully see some of our friends from last year.

 

For more information about the GWU camp, please visit

http://departments.columbian.gwu.edu/speechhearing/sites/default/files/apraxia_summer_camp_2013_revised_2.pdf

 

 

 

Making Plans...

One of the most important choices that I think we ever made was getting Luke to the best apraxia and sensory processing experts known to man.  This not only gave us insight as to what the best practices and protocols, but it also gave us the ablilty to share what we learned with therapists in our area. 

Until Luke, Childhood Apraxia of Speech was something that therapists here had heard about, but not really diagnosed.  Many are still afraid of diagnosing children with Childhood Apraxia of Speech too soon.  I still can't understand what they are afraid of and what harm it could do. I guess they just really don't have the experience with CAS. 

My background is in Early Childhood Education, with a Masters in Reading and an Educational Specialist in Elementary and I am of the belief that early intervention is key.  Specifically in apraxia, it takes the right kind of treatment and therapy.  It has to be intense and frequent.

Going to Michigan, to Colorado, to Arizona and to DC was not something we planned for.  Kind of like apraxia, dyspraxia and sensory processing disorder.  Not something we planned for at all.

It wasn't easy to make those much needed trips.  It took us opening up and asking for help, as well as accepting the help offered.  Our church and community has been amazing. 

The sacrifices made by so many will never be forgotten.

And while Luke has come so far, our journey isn't done. 

I can see the light.  I can see the progress.  He just needs more.  More intensive help from the experts in far away places. 

And so......this mama is on a mission again!  Operation Fundraising for Far Away Places ;)