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

Praising God on Children's Sunday

We have so much to be thankful for after a wonderful week of therapy in Michigan. The specialists there couldn't be more amazed by Luke's progress. They are pleased with the team that we have in place here in Georgia. From our school SLP and OT at LCS, to our private SLP and OT at More Than Words Pediatric Therapy, and our preschool teachers and choir teachers at FUMC....it truly does take teamwork.

To see Luke in the beginning of this journey with no sounds, no words, and then to see him now, the progress is nothing short of miraculous.

We have claimed it for His glory and will continue to praise Him for His guidance, strength, provision, and grace.

Thank you Lord for healing Luke, sound by sound and word by word.

Here is Luke singing with his choir the Sunday we returned from Michigan.

http://www.youtube.com/watch?v=f1mseLp3xlI

Obey~Faith~Rejoice

Time Flies When You Are....

At Kaufman Children's Center.

We were able to work with Diane Nancarrow this past week for a 4 day intensive therapy in speech. And let me just say....she came highly recommended from one of my apraxia besties (who spent a month there last spring working exclusively with Diane and the OT staff).

Diane N. lived up to all of the expectations I had and then some.

Their speech sessions flew and before I knew it, Luke was working for at least an hour at a time.  Both she and Nancy were impressed with the sounds Luke has mastered and his articulation. He began the week with 3 to 4 words in a "phrase" or "sentence" and by mid week had moved to 5, 6, and 7 words per "sentence"...with multi syllable words. (He even had a 9 word question outside of speech that I shared with all my friends on Instagram and Facebook).

Having the ability to see what Diane N. and Luke were doing (from behind the glass) really does make a difference. The insight that window provides is invaluable as to what I will be able to bring back, share with our team, as well as the carryover that we can apply in our everyday lives.

Luke was able to see some of our favorite occupational therapists.....Chris, Amy and Jason daily. He worked with them in the KCC's new sensory gym and loved every single second.

I went in with questions and needed some real solutions for things that most of you reading would never even understand, nor would I attempt to explain it to you....but they listened.

They heard me and offered real solutions that we began immediately.
But what is even better, is that the strategies worked.

For the first time ever, my child has brushed his teeth without a fight and has been in bed, sleeping by 8:15 at the latest.

Luke working with Diane.  He LOVED her waiter game.

More work and a little bit of play....with Perfection.  As he practiced phrases, multisyllable words, etc. he earned pieces to add to the Perfection game....when they were all filled, they set the timer off and watched them pop up.

Luke, Brownie and Diane

May I please have some watermelon after we eat?
9 word sentence!!!
So naturally we ran to the nearest grocery store and
picked out the biggest slice of watermelon we could find.

Luke and Chris in OT

Luke and Amy

I think this little hideaway was his favorite addition to the OT room.

Jason, Brownie and Luke

Chris made this binder with Luke's Bedtime Schedule inside

Big stuff.