Exhausted!!!

Ever feel like life is flowing along at an even pace and then suddenly... bam! the rug is pulled out from under you!?!

Well, welcome to my world this past month. Granted, with all due respect, our trials and tribulations are nothing compared to some, and I recognize that, I empathize with others and what they are experiencing, and yet when my world gets rocked, ever so slightly, I feel like the sky is falling!

As you know we have been struggling with speech and verbal articulation for... well, forever it seems; but at least for the past couple of years. I feel like we are on the right path now with our current therapist, Lynn Carahally the founder of the Speech E-Z program, and the owner and director of Foundations Developmental House. She is a specialist of verbal apraxia, as well as oral apraxia (the latest diagnosis)!!! So yes, I do feel like Lynn is the pathway to our continuous search for that Holy Grail of speech.

Then there is our every day academics... Noah has been attending the same Montessori school for the past year and a half. There is always the question in the back of my mind... am I doing the right thing by my boy? Is he in the right environment to encourage his unlimited potential? However, every time I question this, I am quickly reassured when I see the alternative choices...
Last week I heard of a supplemental option for Noah a couple of days a week. This other program promoted the opportunity of one on one speech encouragement, which was six hours a week of a speech induced preschool. So, in my search for that infamous Holy Grail, I took him for a day of observation.

Well, it was quite a day of enlightenment... the class had a student/teacher ratio of 1-3, a wonderful ratio. However, spending about half the day there, I quickly realized what a fabulous environment he is currently in at his Montessori school. The supplemental school was very chaotic... lots of outbursts from the other kids, one child crying inconsolably, and a whole lot of crazy energy that neither Noah nor myself were used to! It didn't have that easy flow of his Montessori class. It made Noah very uncomfortable as I saw him shutting down, emotionally and socially. I'm so grateful that I took the time to observe the class vs dropping him off and expecting the best, as this was not the right environment for my little man.

We continue with our 3x weekly therapy and intense home encouragement with the hopes of successful conversation.

Noah isn't maximizing his potential while at his Montessori classroom. This is a primary class of approximately 30 kids ages 3-6. Noah isn't completing tasks nor moving on to more intense studies.
The suggestion was to have an "aide" to attend school with Noah to work with him one on one and help him to advance to the next level of his expected skills and cognition.
I think that this will be the best option as I want to keep him in the Montessori system as I truly believe this is the best for him, yet with someone working with him one on one and encouraging him to select and complete his tasks, this will help him gain both confidence and mastery of his skills.

By the Grace of God, all has worked out and we have found the perfect solution! Noah will have Amy attending school with him, M-TH and Friday he will go independently. (Amy currently works with Noah at home a couple of days a week and we she is working on her masters in special education. We love Amy!!!). My hopes is that by having Amy there daily for the majority of the week, he will know what it is he needs to accomplish throughout the day. On Friday, he will hopefully have the confidence from success earlier in the week that he will try to complete his work vs using his adorable good looks to charm the teachers to get what he wants!

Breathe... school seems to be on track, for today at least ;-)

Somewhere in the midst of all this chaos we have dealt with the holidays which includes lack of enthusiasm from my husband; daughter home from college (which I cherish) yet accompanied by her adopted cat, many transient friends and lots of 20 yr old girl drama (not cherishing so much); my mom and her husband John visiting (which I also truly enjoy, but having recently downsized to a much smaller home, it took a little... ok, a LOT of adjustment to accommodate so many people in one tiny abode). Oh, did I mention that my mom brought her dog, which liked to chase my daughters cat, which just worked up my two dogs... oh Lord, where is Calgon when you need it!!!

Post holiday's, after surviving the ever loving, soon to be missed chaos, came the infamous sicky bug. It began with Jacques being sick and in bed for a few days. Then it was Noah's turn. His ended up being an ear infection (first infection even though this is our third set of tubes, which have all been preventative for hearing issues) and he was on two different antibiotics and home from school for over a week.

So Happy New Year, a bit delayed but filled with the genuine intention.
Yes we are exhausted, however on the road to peaceful recovery and looking forward to a year filled with love, confidence and our continuous journey on the path to finding the Holy Grail of verbal language for our amazing little man!

Wordless Wednesday...

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 ;-)

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.

http://www.fdhkids.com/director.html

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) ;-)

"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????

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!

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!!!