Wednesday, December 15, 2010

Tuesday, December 14, 2010

New speech therapist ~ Apraxia specialist

Noah started therapy yesterday with Lynn Carahaly at Foundations Developmental House. She is the apraxia specialist that hosted the seminar I went to a couple of weeks ago.

Right now she is really just letting Noah get to know her while she observes the way he will learn best.

My goal is to document via video his progress. Let it be known, my boy WILL TALK!!! Please dear Lord, hear our prayers..

This is where they are working on "the four corner vowels". These are the vowels that put your mouth in the most extreme positions to get his mouth and mind used to flowing from one to another.

Here they are working mostly on CV, consonant/vowel combinations. It is all prompted right now, with very limited approximations, but this is only the beginning ;-)

Saturday, December 4, 2010

Talking with Apraxia...

It has been suggested in the past that Noah has verbal apraxia, also know as childhood apraxia of speech, or CAS.

Childhood apraxia of speech is a neurological speech sound disorder in which the precision and consistency of movements underlying speech are impaired in the absence of neuromuscular deficits. The core impairment in planning and/or programming parameters of movement sequences results in errors in speech and sound production and prosody.

Basically, Noah knows what he wants to say, however as the sound travels from his brain to his mouth, it doesn't come out as intended. Also, there could be issues with the way he "hears" the sounds so when he attempts to say something it isn't with the proper sound and syllable of the word (prosody).

Today I went to an all day seminar with Lynn Carahaly, founder of The Speech EZ Apraxia Program. Wow!!! What amazing information. Typically when I attend a seminar, by lunch time I am beginning to shut down and I am mentally spent by mid afternoon. Today, I literally couldn't get enough!
8:00 - 5:30 and I was still hanging around to talk to people!

Lynn Carahaly, M.A., CCC-SLP is the owner and director of Foundations Developmental House, LLC located in both Chandler/Gilbert, Arizona. Lynn received her Bachelor's and Master's degree from The Ohio State University and is pursuing her Ph.D. in the field of Speech Language Pathology. Lynn is a member of the American Speech and Hearing Association, the National Coalition on Auditory Processing Disorders, and the Learning Disabilities Association of America.

Her area of expertise is with the treatment of Apraxia of Speech, Auditory Processing Disorders, related disorders and learning disabilities. Lynn Carahaly is a published researcher and has authored several articles on the topic of Auditory Processing Disorders and Speech and Language Disorders. She is also the developer of The Speech-EZ® Apraxia Program.

How blessed are we that she is basically in our back yard. Noah has been going to intensive speech therapy, 4x a week, since June at a very reputable place in town. I love Noah's speech therapist's, and he has been making progress. However, based on what I learned today we have been doing some things that are really detrimental for apraxia.
Ex: segmenting words... You should never segment a word to teach a child with apraxia to speak. So what we have been doing for the word "book". We would have Noah say "buh" then "oooh". With visual "prompt" motions helping him to remember the "b" and the round lips for "oooh". What we should be doing is have Noah get his lips in the rounded motion, then "pop" his lips to say the "buh" and it is natural for him to move into the "oooh", creating the flow of "booh"

I know I'm not doing this example any justice, but it sure resonated with me! So, as much as I like Noah's current therapists, I am switching to Lynn (and I can actually see her, not one of her underlings). (At SPSL where he currently is, you are evaluated by Anita Warner, the founder and big wig, but then you work with SLP's under her).

Lynn does a lot of work with motor planning issues and processing skills. She is also a certified Listening Program provider. So, she is basically incorporating all that we are doing with the NACD as well!

So, we shall see. I am hoping to begin on Monday. The downside... Noah's current therapists are about 12-15 minutes away. The new place will be about 35-40 minutes. But travel doesn't matter if my little man finds his voice! Cost, well that's another issue, but by the Grace of God my mom helps to supplement Noah's speech therapy! Thank You Grandma J-9 (Aaamaa) ;-)

Wednesday, December 1, 2010

"Special Needs"

"I have a child with special needs". I hardly ever say that. I usually state that my little man was born with Down syndrome. I look at his extra chromosome with the same awe that I do his blonde hair and blue eyes, its just what makes up Noah.

I've researched so much information since he was born 4 years ago, but not necessarily about DS. I have focused on Noah and his needs specifically. Nutrition, neurodevelopment, physical goals and our current challenge with speech. All of these are things I would be doing regardless of his "label".

I've struggled and still do, but not with his diagnosis, with expectations. I will never lower my expectations for Noah, I just need to continue to remind myself that he will accomplish all that is needed, but more importantly, he will accomplish and master these tasks on his own timeline. That doesn't mean I don't encourage and push him to do more, to try harder and be the best he can be; that thought process is for me to accept him and his efforts... today.

Noah has and continues to teach me to live in the present moment. My daughter Devin, our days were filled with what lower school will she attend to be accepted into the best high school for her greatest success in college that will look good on her resume for grad school...It was never ending!!!

I found myself going in that same direction with Noah. To the point that last summer he was accepted into an elite little prep school for their summer program. MY goal for Noah was to attend their summer school program and PROVE to the board of directors that Noah can do all and be all that the other preschool children are. MY idea was to educate the educators - oh yeah, and all this was at Noah's expense. See I figured I would work with Noah every afternoon to teach him what the next days lesson would be so when he was at school it would be review for him and he could keep up the with class.
HELLO! What about his well being? His downtime? His life? There was such a huge amount of accomplishment that was recognized by all who heard of his acceptance that I felt that I was doing it, I was proving to the world that Noah is amazing - he must be if this incredible school would consider him for enrollment.
Ugh! It's incredulous how our ego tramples over us and we don't even realize we are roadkill!

But, by the Grace of Noah, I saw the light :-) He is attending his Montessori school, doing well and is a happy little man!

Tonight I was talking with a friend, a very knowledgeable friend about Autism. I was asking her questions and I described a child as being "autistic". It wasn't until after we hung up that I realized that probably wasn't appropriate. A child has Autism, just as Noah has Down syndrome; he isn't a Down syndrome child.

There is a movement in the special needs community called People First Language...

People First Language (PFL) represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first.

One of the five apples is green. One in every five American has a disability, making people with disabilities the largest minority group and the only group that anyone can join at any time: at birth or through an accident, illness, or the aging process.

A green apple is more like red apples than different; a person with a disability is more like people without disabilities than different. The U.S. Developmental Disabilities Act states, "Disability is a natural part of the human experience..."

So, yes, I have been a member of the special needs community for over four years, yet I continue to learn something new and to apply that knowledge every day.

And for the record... Noah IS Amazing! Regardless of what school he attends, how many words he can say, or his potential IQ. He is my little man whom I love with all of my heart and who melts the hearts of all those around him. I often wonder, who has the special needs????

Friday, November 26, 2010

Happy Thanksgiving!!!

This is a year for all of us to be so grateful for every little blessing! It has been a tough year for many and how wonderful that we are given a day to be with family, eat wonderful food and celebrate our daily gifts of God given goodness.

As a tribute to Noah's teachers, therapists, and family members, we spent the last week making turkey's of thanks.
I cut out the pieces and wrote on the turkeys and Noah helped me to glue on the accessories. It was fun and he was semi-patient... completing a few turkeys each day.

I think my favorite part of any holiday is the preparation; especially setting up the atmosphere. I love pulling out my Grandmother's dishes and finding linens and accents to go with the holiday decor.
I also love dressing my little man for the day! My mini clothes horse!
We had a wonderful celebration with our immediate family. It was fun, relaxing and satisfying... yum!! :-)
Here is a photo collage of our day photographed by my talented hubby.

I'm thankful for God guiding our path, for my family, our health and our wonderful friends, old and new! I look forward to growing closer to all this upcoming year!

Tuesday, November 16, 2010

You Better Run, Run, Run!

So lately, well for the past four years ;-), I feel like all we do is run from one thing to the next.

In order to have some sanity and connection with my husband, along with a simi-functional 40-something body, we like to run together in the morning. So, we wake up, (usually around 7:00) Noah has some milk while he plays on Paddington (his i-pad) and we have some coffee, then it's off for a morning run with Noah in his jogging stroller.

We get home with about 15/20 minutes for Noah to have breakfast, get dressed and get in the car to go to school.

School is from 9-12, then he usually has an appointment soon after.

There is the NACD program that is supposed to be completed daily, along with a nap and feedings, relaxing and just being in the moment. All this is supposed to be fit in before going to bed around 8:00 and starting it all over again!

Noah's weekly schedule...

Mon: School 9 - 12 - Speech at 1:00
Tues: School 9 - 12 - Speech at 2:00
Wed: School 9 - 12 -Speech at 1:00
Thurs: School 9 - 12 -Speech at 2:00 - Horseback Riding at 3:00
Fri:School 9 - 12 - Music at 1:00

A blogger friend talked in a previous post about Free Play and the importance of it for proper development.
She also spoke about the guilty feelings that we (especially the mom's of children with special needs) experience when we aren't DOING something to better the future of our little ones!

Ahhh, how I related to her post! I constantly feel like I should be Doing More, Being Better at ... and Helping Noah to Accomplish... It is never ending!

Noah is happy. He is doing well in school. He is making strides in speech. He is growing up and he is AMAZING!

I need to learn to live more in the present moment and take in everything around me, just like my little man!
When I grow up, I hope to be JUST LIKE HIM!!!

Friday, November 5, 2010

To Ride or Not To Ride... That is the Question!

Oh, to have my little man riding a bike... isn't that the quintessential "boy in the summer" thing to do?

When I was pregnant and we found out we were having a boy, my mind went on quite the adventure! Having only raised a girl before (where badminton was the sport of choice) and not living with a sports oriented husband (art, movies and research on the latest cameras vs the latest quarterback of the season was his focus) I had no idea what to expect from a boy being brought into our household.

Now, I do have a brother in law and nephew that would surface in the dictionary under the standard definition of testosterone. They watch the weekend sports, whatever that may be at the moment; they work on cars in the garage, a lifelong adventure; and they talk about "man-food" like it's the second coming... so yes, I have had some exposure to the Man Cave, Guys World kind of atmosphere. However, how is that incorporated into our world... one of eccentric, crazy, fun-filled adventures, with a non-gender passionate lifestyle amongst us all.

Noah is the epitome of all of us combined... funny, creative, seeks his solitude, interested in movies, books, numbers, order and reading. The physical aspect of his lifestyle has come along as a secondary reflux. His peers are into soccer, soccer, and more soccer. Noah is into running, the feel of the wind on his face, the shadow that follows him and the smiles from those lucky enough to come across his path. The kicking of the ball to watch it fly through the air, fascinating! However, having to kick that ball to reach a specific person or make a goal... boring!

I recognize Noah's drives and desires, yet I still have this unrelenting compulsion to have Noah ride a bike. And not just ride the bike, but ENJOY it! How deranged is that!?! For some reason, I believe, that once he masters the peddling and maneuvering of the bicycle, he will want nothing more than to explore the world from this rubber wheeled contraption!

We began our bike adventure with the infamous push-trike.

This bike worked well for quite a while. We attached Velcro strips around the peddles to keep Noah's feet in place while riding. The wheels turned on rotation as the bike was being pushed, therefore moving Noah's legs in the proper pattern of riding his bike both for memory and brain development. Also, the push handle allowed the parent to steer the trike as well. This bike met every need possible, and Noah LOVED going out on his bike. The problem arose when he outgrew the little trike. (Growth pattern has never been a challenge for Noah).

So, on to bike number 2...

This past summer I purchased a two wheel bike with training wheels from Target. We put it together, then we took it to the local bike shop for some "modifications". Well, the modifications ended up costing us more than the bike itself! What we did was we changed out the peddles of the bike and added peddles that could accommodate the toe stoppers. This way, we figured it was a good transition for Noah to learn to peddle the bike by himself, and keep his feet on the peddle. The toe stoppers were there for additional support.

Well, needless to say, this was not a big winner! He would put his helmet on, get on the bike, and (with my assistance, poor lower back) would peddle about three or four spins, then he was "all done". All done - seriously... we only went half way to the neighbors! Ugh! But, I want him to love it, so... we turn the bike around, and I "negotiate" with my 4 yr. old son, to try to ride his bike back to our house - all 20 feet! (It's amazing that I negotiate for a living... yet my four year old son can really throw me under the bus)!!!

So, failure with bike #2 has led me on the search for a larger trike that had the capability of assistance (push bar) yet allowed Noah the independence to learn to peddle and ride a bike on his own.

After a lot of research, I ordered the Radio Flyer, 10" trike with a push bar. It arrived today.

The nice thing about this bike is that it is larger than his last trike. The peddles move in rotation when the bike is moving. There is a push handle, however it does not "steer" the bike. It fits Noah well, and I figured that once he has mastered this trike, his little bike will be a piece of cake!

I was all excited when this arrived today! I put it together and then woke Noah up from his nap... "Come on bug (love bug) wake up and lets go ride your new bike"! Ha! He was so not interested! Once I finally got him on the bike, with his shoes tied to the peddles (need to get more Velcro straps) he rode about three rotations and then said and signed... "All Done"!

So, my question for the weekend... Do I wait a while and try again or do I prove to him how much fun the peddling of a bike with the wind blowing in your hair truly is to all! The fact that there is nothing more satisfying than flying down the street, riding on rubber wheels and smiling so wide you can only hope to catch the bugs flying through the evening!

Hmmm, is this my passion or my little man's? Only time will tell :-)

Wednesday, November 3, 2010

Happy Halloween!

This was such a fun weekend! This is our first year in our new neighborhood; a true neighborhood where they have block parties, trick or treaters and lots of fun!

One of Noah's favorite shows, along with Signing Times and Jacks Big Music Show, is The Wiggles! So, this year he dressed up as Captain Feather Sword from the Wiggles! (we made him an awesome feather sword to go with his outfit, but sadly it was left behind - not viewed to be very awesome from the little man).

On Saturday there was a neighborhood block party. It was so much fun! Noah had a great time, (after his initial terrifying fear of all the people gathered around) he had a fantastic time playing with the neighbor kids for over two hours!

Here are some wonderful shots of our little Captain...

Captain Noah is ready to party...

Ahoy Matey!!!

I've spotted the party!

Hmmm, a lot of gatherers... best to stand back and observe :-)

And in southern AZ, Devin Brooke was disguised as a beautiful Monarch!

A wonderful weekend was had by all!

Friday, October 29, 2010

Noah Bryce, Age 4 yr, 1 mth

Today we had our bi-annual appointment at the Endocrinologist. Noah has been on Synthroid for hypothyroid since he was six months old. The good news, he has been on the same dosage all these years. His body has seemed to adjust and is using the minimal amount to keep our little man growing big and strong!

Noah has always been off of the Down syndrome growth/weight charts, as he is a big boy! He is on the typical growth charts and moving along at a wonderful pace.

Today he measured 40.25 inches and 36 lbs! He has remained constant on the typical growth chart at the 50% in height and he is around 40 - 45% on the typical weight chart... tall and skinny.

Lovin this little guy!

International Festival Day

On Thursday evening, Noah's school celebrated their International Festival Day.

The month of October was spent studying the different countries around the world and their traditions.

It was so adorable, the kids performed for their parents and family. They sang about 10 songs all in different languages with gestures to accompany each song.

They did such a wonderful job!!!

Noah's Great Grandmother is Native American from the Cherokee tribe. That makes him 1/8 Native American (my little blonde native)!
So, it was appropriate for Noah to represent the Native American's during his school festival.

He insisted on being front and center... never taking his eyes off of his teacher, except at the end of the song to clap and share his joy with all those around him!

Below is a fabulous montage of the celebratory evening, captured in photo by my amazingly talented hubby ;-)

Monday, October 18, 2010

Halloween Craft!!!

Today Noah brought home his first school craft that he completed... a necklace for Halloween.

Noah is still attending Community Montessori School, this is his second year. Last year he began attending in September, with a nanny/aide. He would go daily from 10:30-12:00. We then slowly increased the time through the fall so that by January he was attending 9:00 - 12:00. The first hour, he was going to school on his own, then the nanny would arrive around 10:00ish and stay with him until 12:00.
Through the Spring, we began to have the nanny go less and less, until the last month of school he was attending completely on his own!

This year, Noah began school on September 1, going completely solo like the rest of his peers :-) He is attending from 9:00-12:00 daily, and is doing fantastic! It takes a lot of work as far as keeping in contact with the director and the teachers, sharing what Noah is currently working on at home (especially regarding speech) so that they can reinforce it at school, but it is all worth while!

I am so proud of my little man! Here is a photo of his first independent art project, (with a little help from Miss Carol)!

Saturday, October 9, 2010

Devin Brooke, Our amazing daughter!!!

Yesterday we spent the afternoon in Tucson with our daughter, Devin.

She is now a Junior at the University of Arizona.

Yesterday she was being honored for Academic Distinction at the College of Science Honors Convocation. (This is an incredible honor where she had to maintain a 3.5-3.9 GPA for 30+ units)!

Jacques, Noah and I drove the two hours down to Tucson, picked up Devin at her house and went to the college for the Convocation, which we thought began at 4:00 pm. As we are trying to find a parking space, Devin reads that it actually began at 3:00 pm and refreshments were at 4:00! Poor baby, I felt so badly for her, missing the recognition in front of all her peers to receive her cords that she has worked so diligently to receive!
Ahhh, typical Barbey moment! ;-)

Needless to say, by the end of the day, everyone was a little grumpy... I love spending time with my kids, attitudes and all!!!

We were still able to get her cords and have our own celebration which ended in a wonderful dinner with her girlfriends at a delicious Italian restaurant with the ambiance of a true cafe in Italy :-) Yum!

Tuesday, October 5, 2010

Happy 4th Birthday Noah Bryce!!!

September 29, 2010 - Noah turned 4 years old!!!

Our little man is growing up! Part of the day's celebration was to share with his friends at school.

Noah attends Community Montessori School, which has children from ages 3-6. (preschool thru kindergarten).
The birthday celebration at school consists of sharing what makes you special and defines you since you were born on this earth.

This year we choose to share something that makes Noah special... being born with Down syndrome. We talked about how it may take Noah a little longer to learn how to play soccer or maneuver across the playground equipment, but that Noah will learn and he is just like his friends. We also talked about the fact of Noah learning to talk and use his words and that sign language is a bridge to help him to communicate his wants and needs right now as he is learning speech, but that he is just like his friends. We shared that even though Noah may not speak right now, he understands all that is being said to him, just like his friends.

The morning went really well and at the end of the school day we gave to all of the parents some informational coloring books (idea originated from Amanda Bell) that we put together talking about Down syndrome and how Noah may take longer to learn some things, but actually, he is just like his friends.

We have received such positive feedback from our message sent home to the parents that I am so very grateful!!! It is so nice to have my little man be accepted, regardless of the challenges that he may face.

Enclosed are some photos from that morning... Happy Birthday little man - we love you with all of our hearts!!!

My little Libra, enjoying his birthday morning with the rising of the sun

Noah is greeting all his friends as they enter the classroom...

Everyone "shake your silly's out" before sitting down on the line...

Birthday Boy wears the crown; well sort of...

4 years ago today...

A hand made card from Miss Ella... :-)

Happy Birthday my little man. In the past four years you have brought me more joy in experiencing the most beautiful, yet simple things of life. You have brought me closer to God and the understanding that life, our life, is in the hands of the Lord. You have taught me patience... oh, the patience to wait, learn and accept things as they are right here and now. However, along with that patience, you have taught me the definition of hard work and tenacity - true tenacity... that of never giving up and never accepting anything but what you believe is your best!!! Yes Mr Noah, I have learned this precious lesson from you!

The four short years that we have shared together on this earth feel like a lifetime... I could never imagine my life without my little man. I am so eager to experience and learn all that you have in store for us in the years to come.

Thank you for choosing me to be your mommy - for choosing us to be your family!
With all of my heart and soul I write to you my son Noah. Lots of love, Mommy.

The Longest Summer

I know that it has been forever since I have taken the time to log and blog. For this I apologize, the time has just run away...

This was a summer of work; very hard, consistent, determined work. All with one goal in mind... SPEECH!

Noah, my little man with more tenacity in his little toe than I and most people possess in our entire being, worked his little body and mind non-stop this summer. He was having speech therapy 7 times a week! 7 times! I'm surprised CPS didn't show up at our door! ;-)

Although not "officially" diagnosed, it is presumed that Noah has Apraxia of speech. Therefore, he knows what he wants to say, but it gets lost somewhere from his thoughts to his mouth. With Apraxia, it is very important to have constant repetition. Constant. The sounds, vowels and words need to become like a reflex. Something that is innate without thought or effort.

We began this intensive (and very expensive, thank you Grandma J9 for helping) approach to help his speech in mid-June and are still going strong with weekly sessions of 5x each week.

The goal - to talk, to communicate his desires, wants and needs. The results... as of today, after 3 1/2 months of intensive therapy, we have made progress. The definition of that progress may be defined by many expectations, but progress has been made.

Noah is speaking, mostly when prompted, in elementary word approximations. Ex: More = mo, Milk = mi, Ball = ba...
We are working on the bi-labial sounds, P,B,M and the vowels. So, the word Book will sound like "bbu, uuh" Blue sounds like "bbu, ooh" ect. Is the process long and excruciating? Yes! However, imagine yourself as Noah. How frustrating! To know what you want to say but as you attempt to express yourself, it doesn't come out as intended. So then, why bother? Why not just scream, yell, point and pull someone to show them what it is you are wanting?

What I wouldn't give to spend a day in his little body and mind... perhaps someday :-)

We did manage one escape early in the summer down to a family home in LaJolla.

Here are a few photos of our little local on the shore...

Saturday, May 29, 2010

Busy month, relaxing day!!!

This past month has been such a crazy time... my work has been more than all consuming, leaving little time for relaxed laughter and family fun.
Thank goodness for a quiet weekend with my boy filled with fun and play in our backyard.

A kiss from my little man...

Hi Daddy!

I am the king of the swing...

Love nap time...

Ready, set, lets go again...

Saturday, April 24, 2010

A Day at the Zoo!

We spent this Saturday afternoon at the Phoenix Zoo with my mom who is visiting from Idaho. We have had an annual pass since Noah was born, but this year it was completely different. He is so interested in all the animals, all the people, everything happening around him. He is also trying to say the names of the animals! It was so much fun!

Noah looking at the ostrich and the antelope.

Seeing the orangutan up close... Noah was trying to say "orangutan", look at those lovely lips!

Noah fed the giraffe and was such a brave little guy, even when the giraffe licked him with that long, long tongue!!!

Taking a break and acting like a cheetah!

Can't leave the zoo without a ride on the carousel.

I love this age.. I wish I could bottle him up and keep him just as he is right now!!! Although I seem to say that at every stage!