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Thursday, July 21, 2011

Early Signs and Symptoms of Apraxia of Speech

Apraxia of Speech

Early Signs and Symptoms

  • Limited or little babbling as an infant (void of many consonants). First words may not appear at all, pointing and "grunting" may be all that is heard.
  • The child is able to open and close mouth, lick lips, protrude, retract and lateralize tongue while eating, but may not be able to when directed to do so.
  • First word approximations occuring beyond the age of 18 months, without developing into understandable simple vocabulary words by age two.
  • Continuous grunting and pointing beyond age two.
  • Lack of a significant consonant repertoire: child may only use /b, m, p, t, d, h/
  • All phonemes (consonants and vowels) may be imitated well in isolation, but any attempts to combine phonemes are unsuccessful.
  • Prosody is unusual, there is equal stress and sometimes a monotone quality.
  • Speech may change or disintegrate with many repetitions.
  • Words may be simplified by deleting consonants or vowels, and/or replacing difficult phonemes (consonants and vowels) with easier ones.
  • Single words may be articulated well, but attempts at further sentence length become unintelligible.
  • Receptive language (comprehension) appears to be better than attempts at expressive language (verbal output).
  • One syllable or word is favored and used to convey all or many words beyond age two.
  • The child speaks mostly in vowels.
  • Verbal perseveration: getting "stuck" on a previously uttered word, or bringing oral motor elements from a previous word into the next word uttered.
  • Oral groping may occur when attempting oral motor movements or consonant/vowel production.
  • Struggle behavior may occur when attempting to imitate or to speak (without dysfluency or stuttering).
  • Deletions or replacements of consonants, vowels or syllables may occur at the end of a word, phrase or connected word levels.
  • Vowel distortions or replacements occur which are not due to oral motor weakness.
  • The ability to blurt out clear whole words, phrases or sentences may occur though there is difficulty imitating these same words "on command" or upon imitation.
  • Difficulty with maintaining clarity with extended word length or complexity.
  • Phonological processes are employed to simplify motor speech output.
  • Late talking with above characteristics or errors may be present.
  • Other fine motor challenges may be present.
  • Echolalic utterances (the automatic repetition of words, phrases or sentences often without comprehension) might be perfectly articulated but novel attempts at words or combinations might be more effortfu

Wednesday, July 20, 2011

Half Way Day~

We are halfway through our time at the Kaufman Children's Center and all I want to do is hit the rewind button and start all over.  Not because it has been an easy time, not because I want a do over, but because I don't want this time here to end.

We ask for prayers to guide us on the shortest path that will lead Luke and the other 5 children attending the SPEAK program to normal speech. 

I cannot begin to tell you how these children have left a footprint on my heart.  These babies struggle for each single sound, each single syllable, each single word...and still they don't give up.  They continue the fight to conquer the neurological demon, Apraxia of Speech.

Luke is such an amazing 2 year old little boy.  He continues to WOW us on a daily basis. 

His brain is literally being retrained every minute of the day~retraining it to speak.  Nancy reminded us about what happens sometimes when you put a dollar bill into a coke machine and it spits it back out, this was the PERFECT analogy at what happens to our children with Apraxia.  They get the information, but their brain or their mouths spit it back out.  We have to keep trying to put that money into the machine, until it accepts and recognizes it.  And with her help, we are becoming masters at making this happen. 

Probably the biggest thing that we will take home from the 3 week stay is how we learned to reword what we say (to make it as close to the word using an approximation that we can) and how to rephrase our questions to "shape" his replies.  We also learned how to implant language or words that he can reuse in our speech.

Today, I was able to come from behind the glass and teach with Nancy Kaufman during one of Luke's speech therapy sessions.  This was an unannounced thing, so there was no way to prepare.  I guess it really is something that this whole journey has lead up to...we are Luke's first teachers, his first models and we must be the BEST.

I have been secretly wanting to work with Nancy during a speech session, since the first time we came to the KCC.  It is so hard for me to sit behind the glass and watch Luke without having a part in the therapy.  Don't get me wrong, I love watching him but it is very painful to sit and watch how hard it is for him.  Tears are shed, from him....from me.  We cheer, take notes, video, take pictures and try to remember everything that we see and hear.  I feel like a sponge trying to absorb it all.

I can't believe that this is really our 3rd trip here.  I would love to be able to say that it will also be our last, but I don't think this is the case.  As well as Luke has progressed, he still is not where he needs to be in terms of expressive language.  We even discussed how many times Nancy would like to see Luke in the next year today and will continue the coversation. 

As we learn how to "prompt" and "shape" what we want Luke to say, I can't help but wonder what would happen if we could live here for 3 months, 6 months, 9 months, even a year and receive the BEST of the best therapy that the world has to offer.  That is how I am, I cannot stop wanting the best for my child and for all of the other children who still don't have their voices.

Reposted from Lauren, Noah's mom~
Therapy for Apraxia does not happen as intensely as 3 sessions of speech a day IF we want to find the road to recovery -- it happens every time he opens his mouth and we find the best 3 to 4 words to require him to repeat to us to develop the neurological pathways from sound to speech. He wants to talk with understandable sounds that create words, we want to teach him, and we are where we need to be right now!

The harsh reality is that there is NO place like the KCC and there are NO other therapists that we have found that can do what Nancy Kaufman's KSLP program, taught by herself and her amazing therapists, can do.

With each child we see in our parent meetings, those that truly understand what is ahead of us realize that each of those "successful children" on the videos are those that have spent extended periods of time at the KCC (meaning several months at a or even years). We feel that we will find a way, but until then we WILL NOT give up on doing and learning all we can! 

We have met the most amazing family during this time. They are Mary Clare and Brad Tarpley. The are from Georgia and we have no doubt that they will be a part of our lives from the day we met forward. They have Maggie who is 8 and a future speech therapist and possibly Noah's wife (lol!) -- she is a precious blessing that is so very loved and appreciated by anyone that gets to spend any time with her! Her little Georgia accent is the cutest thing you have ever heard (any words from a child are like music to our ears)!

They are here for their amazing little boy, Luke, who is 7 months younger than Noah. He and Noah are so much alike. So bright, inquisitive, loving, and hard-working! They were fast friends and it is a beautiful thing to watch them be "normal" together. 

Their families share the same agenda: to help them recover from this neurological monster we call Childhood Apraxia of Speech!

I feel overloaded ... so I imagine you all will, as well, after reading this. Please know that we continue to believe and trust in the Lord and His journey for all of us.

Wordless Wednesday

Sunday, July 17, 2011

Beyond Words.....

Noah and Luke at The Detroit Zoo
I always look for signs...and am known to say that this must be a sign from God.  I look for His signs in just about everything.  Trying to hear what He is speaking to me, which is sometimes hard with all the noise in my head...and all the talking that I do myself.  (LOL!!!)

Beyond Words was typed to me via chat this week...and that truly sums up the SPEAK (Speech Praxis Experience At Kaufman) experience. 

I want so much to blog about everything that is happening and every single thing that we have felt, but really there is no time.  But I did want to make time for this entry. 

Jesus~Bring the RAIN!!!

There are people that come into your life for a reason.  Sometimes for a season, sometimes for forever.  

This week solidified the bond that I had already felt with one such person.

Me and Lauren
To be around her, her precious son Noah, and her ever present husband Augie is such a blessing.

For our family to be with theirs; whether it be eating lunch, going to dinner, playing at the park, or even...spending a Saturday at the zoo.  It is just completely natural...not contrived.  We don't have to be somebody that we aren't. 

We don't have to explain. We don't have to make excuses or quote the research, or tell them what our last therapist said....we can parent without judgement, we can practice all the scripting that we have been learning and we can just be NORMAL.
Oh, we have lots to say and lots to tell each other, but we can also just be....just be us.  It is so nice to have that connection. 

So that is why this is called post is called Beyond Words.  Because the experiences, knowledge and friendships that we are having...are Beyond Words!


This is my first BLOG giveaway and I am absolutely FLOORED that I am going to be able to give this INNOVATIVE and seriously....life changing app away to another parent of a child with Apraxia!

Whatcha talking about Mama?

I am talking about the app that will change your home therapy speech program forever. 
Keynote speaker at the CASANA 2011 Conference
To keep their attention~you have to be better than good :)

To be eligible to win the Parent Version of the Speech-EZ Apraxia Program app:
1. Go to my previous blog about the Speech-EZ Apraxia app. and see what this program is all about.

2. LIKE Speech-EZ Apraxia on facebook and tell them I sent you~

Bonus points for doing the following....

3. Email your journey with Apraxia to me and tell me why you would like to have the Speech-EZ Apraxia App.  maryctarpley@yahoo.com

4. Become a follower of my blog

 You knew it would be a little work to win an app valued at $179, right?
So, what are you waiting for?  Get to it. 
Deadline to enter is midnight Saturday, July 23, 2011.

We can't wait to see who will win it!!!

Many thanks to Lynn for making this giveaway possible and for her friendship.

One winner will be chosen for the Parent Version of the Speech-EZ Apraxia Program App.

Friday, July 15, 2011

The KCC Day 4

I don't think I have told everyone our schedule during the day at SPEAK~Speech Praxis Experience At Kaufman....but here it goes. 

We have 2 individual speech sessions in the morning, usually with a 30 minute break in between.  Luke sees either Julie or Ilene (alternating each day) and ends with Nancy everyday.  We are able to watch behind the glass as they work with him.  Maggie, Brad and I take notes and trade off taking pictures and video.

Luke working with Ilene ;)

Luke in his SPIO, working with Nancy

Here's a clip of some video from today's session with Ilene.

We have some time for lunch and try to get Luke to take a short nap before small group in the afternoon. 

Noah and Luke have become good buddies~

Yummy Mickey pancake ;)
Luke said pancake, too~this was another new word.

They participate in music therapy, have a literacy/language activity, art activity and some movement activity or games.  One parent is allowed to watch behind the glass and at the end the kids come and get us for their final song or an activity. 

Noah and Luke in small group
doing a felt board story of the itsy bitsy spider
After group we sometimes fit in occupational or craniosacral if we didn't get it in before lunch. 

Having a BALL in OT

Times vary because the OT department is simply SLAMMED.  Everyone local kid is out of school and bulking up on their therapy, while all of the SPEAK kids are trying to also be seen.

I will say that it has been so nice to see familiar faces while we spend most of the day at the center.

Wednesday, July 13, 2011

Happy Birthday to ME~

Luke and Maggie sing Happy Birthday to me ;) 


He just started attempting to sing Happy Birthday.  This melts my heart~almost as much as the I love you, mama video ;)

Clip of Luke from SPEAK Day 3 ;)

Here's a clip of Luke from a part of one of today's sessions.  Words I have never heard from him before today ;)


It was a rough day before we reached therapy. We were rear ended by 2 cars. Thankfully we were not visably hurt and were still able to get to our therapy and make the sessions..


Stabilizing Pressure Input Orthosis
The SPIO Superman Suit~
He won't take it off now!!!
SPIO is a compression system made of a patented, breathable, Lycra-blend material.  It has a multi-directional stretch and high rebound factor.  SPIO assists with stability and provides feedback through deep pressure and tactile stimulation.  The compression rations and design improve movement, limb and body position awareness and general stability and balance.

It is effective for~
Sensory deficits
Angelman, Down Syndrome and other syndromes
Cerebral Palsy
Hypotonia, Hypertonus, and spasticity
Brachial plexius injuries
Autism, Rett syndrome, and other pervasive developmental disorders
Related developmental delays and disabilities

Close up of Luke right after we first put the SPIO on him
The OTs at The Kaufman Children's Center had suggested that we use a compression garment on Luke to help with his attention and posture for the best possible sound production. 

SOOOOO, here it is...the answer to the problems~Luke's superman suit to the rescue.  He wore it around and almost refused to take it off.  The KCC suggested that we build up to 2 hours, starting at 30 minutes and then adding time.  We are using it in therapy and can't wait to share the results and video with you ;) in our next blog post.

Daddy helps get his pants pulled up~

Couldn't slow him down with this suit on~
Dyspraxia, Hypotonia, Sensory Processing Disorder ?!?
Whatcha talking about...???

Luke trying out some new moves~
Downward dog...LOL!!!

Customer Service and everyone at SPIO that I have been in contact with were nothing short of FABULOUS~!!!
I recommend this Made In The USA product!
And give it an A plus, plus, plus !!!

Sunday, July 10, 2011

Speak July 2011 at the KCC

We went to the park and played after our testing session today. 
We visited Birmingham, MI.
Beautiful, beautiful town.

Trying to get them to take the pic~hahaha!

The mamas of these miracles~
Tara from Louisiana, Louise from Canada, Lauren from Texas,
Mary Clare from Georgia and Lori from Ohio
(not pictured~Amy from Louisiana)

All together for the chance for their miracles to find their voices
 through the help and expertise of Nancy Kaufman and The Kaufman Children's Center.

I know that the next 3 weeks will be life changing and I pray that
God will work miracles and unlock all of these precious children's voices. 

Please join me in adding the following children to your prayer lists.


Thanks so much for your continued encouragement, support and prayers. 
They mean the world.

Saturday, July 9, 2011

Lake Success

Looking out on Lake Success~

CRAZY that where we are staying is located on Lake Success!!! 
Call it crazy, call it fate, call it whatever you may...
I prefer to call it GOD!
He is so good and we are so thankful for his continued blessings. 

Here are just a few of the things that we have experienced this week in Michigan while receiving craniosacral therapy at the Kaufman Children's Center~

Buga's Bowtique on facebook made Luke's shirt in these pics~Check them out. 
10% of all their proceeds go to The Unlocking Luke's Voice Fund at First United Methodist Church.

Luke worked with Mrs. Amy (OT) this week. 
I heard him attempt to count to 10 with her several times over the sessions.
When he was swinging and spinning during his first session, he also almost got sick....he grabbed his stomach and I know, most ppl would say OH NO that is terrible, but for Luke...this is a good thing.  Before now his vestibular system was under and now...it is working.  You should feel sick from that much spinning.  LOL!!! 

I cannot wait to share all of the other miracles that happen while we are here at the KCC.  Stay tuned for more....because SPEAK camp starts this Monday!!!