It's in Black and White

This post has been a long time coming. Luke has flourished this year (socially, emotionally, and physically). His speech is understood by almost everyone.

Gone are the days that I have to repeat what he said to others and play translator. He is a verbal communicator and we couldn't be prouder.

Many of you know that I left teaching to devote my time to his care and ended up homeschooling Maggie in the process. While it was the most rewarding year of my life; it was also one of the most difficult. 

There were days that I didn't know if I had....enough.

Days when I wanted to call in sick and cancel therapy.

Days when Luke said I want to quit "peach". (which I responded without missing a beat...when you fix that sentence and say "speech" correctly, we will discuss it). 

Sounds harsh, but this apraxia thing can't be taken lightly.

We talk tough.

We love hard. 

And we work hard.

It takes work. A lot of it. And work, we did.

I basically scripted, prompted, cued and corrected all day long.

The good news is....after 7 speech therapies per week (4 privately and 3 via public school) from Sept.- May; Luke will only need to have 2 x 30 minutes of private speech therapy starting Aug 5th. (school therapy is also decreasing to 2 x 30 min. (1:3)

I write this not to pat myself on the back, but to stress that it isn't easy and it isn't always fun. 

But we persevered, made adjustments and pressed on. 

And because of Luke's hard work, our phenomenal team's efforts and God's grace....we made it. 

It's in black and white, too.

Luke's diagnosis has been downgraded to residual apraxia of speech and an expressive language delay. 

Yep. 

You read it correctly. 

We are beating apraxia. Although CAS sometimes shows up in motor planning; Luke is now testing above his age group in speech. 

Praise be to God. 

For without Him, none of this would have been possible.

Reaching New Heights

Never did I think that I would attend the CASANA conference.  (For those of you reading who don't know what that is...its the mecca for information about Childhood Apraxia and it happens once a year)

I had secretly hoped that one day, after we were done with intensives and the many therapies that I would go.

With help from the Georgia Council for Disabilities, this secret little dream of mine became a reality. I attended the CASANA Conference 2013 that was held in Denver, Colorado.

I was able to learn from the best of the best about apraxia; the latest research, the cutting edge therapy techniques, the genetic pieces of the puzzle, and much, much more. 

Thinking Outside the App with the AZ Speech Guy aka Jeremy Legaspi, M.S., CC-SLP

Phonological Awareness with Dr. Amy Skinder-Meredith 

Play and Social Thinking with Nancy Tarshis, MA, MS, CC-SLP

But most importantly I met other mothers and families that have experienced apraxia firsthand.  We shared stories during our breaks, met over food, and even bonded by painting.

I had my copy of Anything but Silent autographed by Kate Hennessy and I finished reading it in about 2 hours ;)

Smiling with Brooke about finally meeting in real life

Mary Squared: Mary Mahon (an iMum) and Mommy Square

Our group's table at Canvas' and Cocktails

Nancy Kaufman and I with our finished masterpieces

At the luncheon, they announced that the 10th annual CASANA conference will be in Nashville, Tennessee! Yee-haw!!!

And then there was my chance meeting with this mama. She is the epitome of the word warrior and is just as crazy as I am about winning the war on apraxia. The similarities between us are so close that it is almost scary. I am positive that God knew we needed to meet.

My spirit is renewed and I returned home to spread and share the information gained with others. 

CHAMP Camp Day 4 Graduation

CHAMP Camp Graduation Day is a BIG deal.  It's hard NOT to get emotional about the progress that occurs, the friendships made, the lessons learned and the inspiration gained. 

I found this book at the GWU bookstore and it seemed to fit perfectly...Luke does have BIG plans. I gave it to Luke graduation morning and we gave Abby the same book as part of her thank you gift. 

Parent education for the last day was incredible. Britt Collins (OT) and author spoke to us about sensory processing. It was most informative and left me wanting more. I am getting her books ASAP.  Britt has worked for Dr. Lucy Jane Miller at STAR Center. I think that in itself is a stamp of approval. 

I was brought to tears when one of the campers thanked his parents and grandparents for bringing him to CHAMP. I cannot tell you how affirming his gratitude was. I pray that one day Luke will be grateful for all that we did to ensure that he was able to communicate.

Super Luke at CHAMP graduation ;)

CHAMP Camp Day 3

Abby planned a ton of cool experiments for Luke, as well as literacy based activities this week. He used the frog in this picture to hit a lily pad target (with sight words). The reading specialist in me was elated!!! And the mama in me was beyond proud of his efforts to "read" this week. 

I loved Abby's flexibility with Luke. She knew his learning style and played to his interests. I can't say enough about her patience and her adaptability. 

Therapy is hard work. And since Luke has been in therapy for so long, he shows signs of being therapatized. He knows the tricks of the trade and attempts to use his smarts to outwit and escape if he can. Abby rolled with it and even came up with activities "on the fly" to keep his attention and divert his attempts at getting out of practice.  I cannot say enough nice things about her. She made therapy fun, meaningful and memorable. 

After Day 3 of CHAMP, we headed across the street and had lunch at Tonic.

Great food and even better company. 

Tomorrow is graduation and although we are ready to get back home to our girl, we are going to miss DC and our friends from camp.

Day 2 CHAMP pics