Friday, April 29, 2016

Crystal's Fight: Every Child Deserves a Voice

My daughter Crystal was diagnosed with severe apraxia of speech when she was 3 1/2 she gets speech therapy twice a week for 50 min each session ,she started with no words and is know putting 3 word phrases . She has improved so much with her therapies,but is still struggling at school academically.  Together we will help her keep going and keep getting better and better! 

I love you Crystal and together we will keep fighting .

Tuesday, April 26, 2016

Nathan's Fight: He Will Continue To Knockout Whatever Comes In His Way

   Born a week after he was due Nathan "appeared" a normal average baby but from the day he was born I knew he wasn't. Doctors were quick to say he was just fine. 
However he didn't progress as he should've. 
He start feeding therapy at 8 months old. By 10 months old he needed physical and occupational therapies. 
Nathan was finally diagnosed with mild Cerebral Palsy in March 2012 at 19 months old. 
After seeing several speech therapists and making no speech progress I knew we were going to be fighting a long long battle.
 At three years old Nathan was diagnosed with extremely severe Apraxia. He started with zero words and sounds. Now at almost six the struggle is still very real... however he has various approximations and even a few understandable words! 
He pushes through 4 sessions of speech, 2 of occupational and 1 of physical every week. 

Nathan is a fighter and he will continue to knockout whatever comes in his way. 

Sunday, April 24, 2016

Luke's fight: Live Life to the Fullest

Luke, a twin, was born a preemie. He was a happy, joyful baby and toddler. He was always laughing and smiling. He struggled with milestones and early on we knew something was wrong. 

He began speech therapy at 2 1/2. In Kinder he struggled a lot. He would cry every morning before dropping him off at school. He didn't want to go. He would come home with bad behavior reports. Peers couldn't understand him and made fun of his speech. He was losing his beautiful spirit. 

We began homeschooling in the fall, 1st grade. We met with our new SLP and 3 sessions in, he was diagnosed with Childhood Apraxia of Speech (CAS) and Dyspraxia (developmental coordination disorder). Speech is twice a week for 50 minutes. We've seen a tremendous improvement this year, with both speech and demeanor.

Luke has a beautiful fun loving spirit with a huge imagination. He has a "live life to the fullest" attitude, with a smile that can light up the room. CAS will not stop him He loves his family, cuddles and dinosaurs. We shall overcome

CJ's Fight: No Longer Defeated, But Excited

Hello, my name is April. My son CJ is 8 years old and received his CAS diagnosis at 3. I knew something wasn't quite 'right' when CJ was about 18 months old. He wasn't progressing like my older son had. The school district sent an SLP to my house and he was denied services. I was toldt hat he would talk when he was ready and he was spoiled by others talking for him. I accepted that and we moved on for another 6 months. 

Then we started hanging out with kids his age and their mothers. It was quite obvious to me then that something was very wrong so I asked for another evaluation. 

A different SLP was sent to our home. She ordered hearing texts and spent a lot of time with him. She said yes he bad a speech delay and we finally had a direction to go. We began speech therapy 2 times a week at our neighborhood elementary school. After about 6 months our SLP said she thought CJ had Apraxia. We saw his pediatrician who agreed and we continued speech at the school and saw a speech therapist that was very familiar with Apraxia outside of school. That meant 5 days a week of speech. 

We started using a communication device and CJ started showing improvement. Currently CJ has speech just 1 time per week and no longer uses the communication device. He is certainly improving but there are still days that are tough. We have a long road ahead but he's a hard worker. 5 years ago we felt defeated but now we are very excited for CJ's future.

Wednesday, April 20, 2016

Aidan's Fight: Turning The Corner

Aidan was diagnosed with severe Childhood Apraxia of Speech at the age of three. He had done little to no babbling, had eating troubles and was late with almost every milestone. He showed understanding of what was being sad, but could never get anything intelligible to come out of his mouth. On the very rare occasion that he did, he was unable to do it again.

Aidan began with speech therapy at the age of two and a half and continues to this day, at age 5. He works harder than any little kid should ever have to. He has six speech therapy sessions each week. And you know what... He is making great strides. The progress with Apraxia is slow and sometimes almost goes unnoticed, but he is beginning to be able to express himself in ways he never has before! Aidan is a typical kindergarten boy who loves to run, play with trucks and tractors.

His most recent favorite thing to do is swing and practice riding his tricycle. It is so amazing to see all his hard work rewarded. It feels like he has finally turned a corner and we see light at the end of a, still long, tunnel!

Friday, April 15, 2016

Jame's Fight: Speech Therapy Graduate!

As a toddler, James was diagnosed with Childhood Apraxia of Speech.

When James started on his CAS journey, there were very few resources available to families. CAS was virtually unheard of. Initially misdiagnosed as having cerebral palsy, then autism; it wasn't until we saw a news program highlighting children with Apraxia, that we pushed for his neurologist to find out as much as she could. He started speech therapy 2 months after his 3rd birthday.

After 10 years of speech therapy, he was able to "graduate" out of speech therapy! A true success!

Now, James is 14, and has been out of ST for about 2 years. He has done several school projects to raise awareness for children with Apraxia, and one day hopes to work with organizations to help raise awareness.

Thursday, April 14, 2016

Linden's Fight: He Has Apraxia, But Apraxia Doesn't Have Him

This is Linden, he is almost 5 yrs old. 

He has Apraxia but Apraxia doesn't have him. Linden was diagnosed with CAS when he was 31/2 years old. One year ago Linden was consider only to be 10% understood by others. He only had a couple of intelligible words. After intensive Speech Therapy both Private and School based, Linden can now say Momma, Daddy, I yuhve (love)you!  Which is the most wonderful thing for a parent to hear. As well has Why, where and what questions. Linden just learned how to say "What you name?" Which he's incredibly excited about and I think its because he can actually ask anyone this question and they understand HIM, not his Mom translating for him. Linden has a long road ahead of him but I wouldn't change him for the world. Anyone that's ever met him will see that this child is the most kind, loving, amazing kid that you'll every meet. Quoting Linden and his favorite song "Everything is Awesome! " and he is the most awesome!

Wednesday, April 13, 2016

Reagan's Fight: I Want To Be A Voice For Apraxia!

Before I got my diagnosis of apraxia I used sign language. Then in Kindergarten, I stopped because my teachers, my mom and my dad wanted me to develop my vocabulary. 

I got a dynavox, (which is an assistive technology device) and I used it until third grade. 

Ever since then, I have been speaking in full sentences and practicing speaking clearly the /S/ and /Sh/ sounds, along with carrying on a conversation.

Mark's Fight: I Can and I Will. Watch Me!

This is written in the spirit of solidarity.  

This is to all the families that struggle with the 

beast we all know as APRAXIA. 

Our son’s story sounds just like many of the other 

stories you will read regarding Apraxia. One difference might be that Mark has Global 

Apraxia.  Apraxia on steroids! I often say our journey has looked a lot like an EKG.  

There have been lots of highs and lows. We’ve had many days that this disorder has 

shaken us to our core.  Some of our lows were how we were constantly wondering what 

the future would look like for our son.  Continually questioning what the best approach to 

treatment was.  Countless days when we felt we weren’t doing things right or that we 

were not doing enough.  

We struggled with the mountains of bills, trying to schedule the 

countless appointments, the running from one appointment to another, fighting with 

insurance companies, attending IEP’s where we fought for his right to an appropriate 

education, and all the while juggling the needs of our other 3 children. 

However, the lows 

that impacted us the most were when we saw Mark struggle beyond belief to say the 

simplest of sounds and seeing him feel defeated.  Those were the times that hurt the most 

and it literally crushed us as parents.  

I am happy to say that although it has taken us quite awhile to get here, we are 

at peace with our son’s diagnosis.  The highs we experience with Mark on his 

accomplishments are received with pure elation.  The “look” my husband and I give to 

each other when he achieves what seems to be the impossible has got to be the most 

beautiful thing ever.  You all know what I am talking about…the nanosecond where your 

eyes meet your spouses and without words say, “He’s perfect and everything is going to 

be alright”. Pure bliss!!

Global Apraxia is a beast!  It has presented our entire family with 

a lot of heartbreak and worry.  It has been without a doubt a rough journey. But “The 

Beast” has also been a catalyst that brought our family to the place we are today.  We 

have learned that we can rely on each other.  We have learned to LEAN IN and really 

tackle the struggles of Apraxia TOGETHER.  We relish in the accomplishments of 

ordinary tasks like CVC words, catching a ball, riding a 2-wheeled bike, and whistling! 

He is even on a basketball team!

  We have been blessed with so much love and support 

from our family and friends and all along the way we have met so many wonderful 

people and organizations. (Our favorite organization being CASANA!)

Jayden's Fight: Nothing Will Stand In His Way!

This is Jayden! He was diagnosed at age 4 with severe Apraxia. He is a superstar, and has worked very hard to come so far. Jayden has mild apraxia now, at 8 1/2! 

This child never ceases to amaze me, and let's nothing stand in his way.

Bradley's Fight: One Sound, Letter, And Word At a Time

Our boy Bradley is now 7 years old and was diagnosed with Apraxia in April of 2014. 

Bradley started speech at 2 years old and was being seen once a week for 60 minutes per visit. In January of 2014 we had enough after 2 years of services our boy had not gained one word, was grunting and was starting to create his own form of sign language. Life was stressful, Bradley was frustrated and started to be self abusive(hitting himself in the head if he could not get his needs meet by his own sign language) I requested a new therapist and within 3 months we were told Bradley had Apraxia. We were devastated yet relieved all mixed into one.

I applied for the Casana scholarship in May and attended my first conference in July 2014. The Casana Association and our Angel Tiffany (SLP) were life preservers in the sea of Apraxia we could never repay them for all they have done for our Boy. We lived in Northern Rural Maine for the last 9 years we were isolated, alone and treading unknown waters and both Tiffany and Casana helped us navigate the way and Advocated for the best for us. Today Bradley is a confident and intelligible young boy we are still in speech, working on phonics and literacy and still overcoming Apraxia hurdles. BUT we are gaining ground and life is good!!!

We will ‪#‎KNOCKOUTAPRAXIA‬ one sound, letter & word at a time

Abbey's Story: Apraxia? Never Heard Of It!

Abbey is now 9 and was given the diagnosis of Apraxia at 3. She had been getting speech therapy already. Apraxia...never heard of it. What does that mean? Will she outgrow it? Will we ever hear her talk? Will she ever be able to tell us she's scared or hurts? These were just a few questions we had. We practiced.....and still practice. How we prayed for those first, dad, bye, love.... It seemed like we'd never get to hear her talk. Hear her thoughts, dreams, fears... 

...At 5 years old our insurance denied her and stated she no longer met medical necessity for continued speech therapy coverage. Needless to say "mama bear" fought that battle and won! I want everyone to know there is hope!! It's unfair but with hard work, practice, patience and perseverance her voice is heard!!! At the age of 9 she still struggles but has come so far. As a matter of fact sometimes I've heard her peers say "what country is she from?" Because she talks "funny. ". LOL. this always makes me giggle. She talks so much now that I think to myself..."I was worried she'd never speak?" Please know there is hope and in time things will get better :)

Always trust your gut and never stop trying to find answers or strategies that make things better.

Morgan's Fight: I Know She Will Succeed!

This is my niece Morgan!

She is 5 years old and is starting to communicate much better now.

When she was toddler my brother and sister in law and the rest of the family knew there was something about Morgan that was very special! Although she couldn't communicate with words we all knew what she was saying because of her actions. She was diagnosed with apraxia probably about 2 years ago and ever since then she has been getting the help she needs and has shown great improvement!!

I am her aunt and I live in another state than Morgan but I keep up with her progress and I am a amazed at the steps she has taken and I know she will succeed!!

Bristol's Fight: She Is The Reason Why I Fight!

This is 5 year old Bristol who was diagnosed with CAS at the age of three. At that time, she had no words with limited vocal sounds. Today she has a handful of words and is making progress every single day. She loves her babies, driving her truck and playing outside.

She is the reason why I fight!

Matthew's Fight: "...Because You Are Strong Enough To Live It"

Matthew's journey began at 18 months old, when we realized that he wasn't hitting certain milestones. We began Early Intervention and were so blessed to meet our wonderful Speech Language Pathologist Susan. After working with Matthew for a few months, and very little progress, Susan told us that she suspected Matthew had Apraxia.
Google became my worst nightmare. I spent so much time reading everything and anything that I could and it terrified me. My family and friends thought I was nuts. But, I ignored everyone as best as I could. We increased his therapies, changed our approach, began adding signs, and added DI which allowed us to meet another wonderful therapist named Sheri.
It's been almost 3 years now, and Matthew has been in our town's preschool disabled program for about a year and a half. We've had our ups and downs over the past few years, but I'm happy to say that there are many more ups than downs now. Matthew has made wonderful progress, beyond my wildest dreams! I've also had multiple people tell me that I did good and that they are glad that I listened to my instincts. That feels great after having felt so alone for such a long time.

The one piece of advice I would give to parents just starting out on this journey is to believe in yourself as a parent. You are your child's best advocate. Fight for them.
"You were given this life because you are strong enough to live it."

Hunter's Fight: Until He Finds His Voice

Hunter is my youngest. When I was pregnant with him, I almost lost him in the beginning and at the end we found out he may or may not be born with downs syndrome(they were almost positive he wouldn’t be but they couldn’t rule it out).Luckily, he was not. About 3 months old, I started noticing things but kept saying he is just slower than the other two. At about 9 months, I realized my gut was right. He was delayed but there was definitely something different about Hunter. The doctor recommended Early Intervention and I fought my husband to get him the services (he was in denial). My father in law doesn’t speak. Never has. They thought since he was little that he was deaf (turns out he wasn’t and that the doctor didn’t know why he couldn’t speak). He has his own language that only his wife and kids and siblings can understand. I knew I didn’t want him to end up like him. So I began to fight for Hunter to be heard.  

I just happened to see our local news broadcast on apraxia and swore it sounded like what my father in law had. I mentioned the word to my OT who got us a speech eval with an awesome speech therapist that knows apraxia (ironically, the same woman on the news broadcast about apraxia and then our speech therapist for almost 2 yrs after). About a year later, we got our diagnosis. We have been lucky in having amazing and supportive therapists… and when we weren’t that lucky, I fought to get the people in that saw the spark in Hunter and wanted to get that spark going. It hasn’t been easy in slightest bit. But that little boy is a fighter and has an amazing spirit and mind just dying to come out. And while we don’t have any consistent words at 3.5 years old- we do have glimmers of hope where full words come out and his signing is getting so much better. I know if we keep up our fight- he will get there.

Until he finds his voice, I will be there to fight for him to be heard.

Bryce's Fight: An Amazing Support System

When Bryce was born he was a typical newborn, walked by his first birthday, but at two years old was not talking. We knew something was wrong so they did all sorts of tests until two days before his 3rd birthday, he was diagnosed with Childhood Apraxia of Speech. What is that? We figured it out quickly. Bryce was going to speech a few times a week and it felt like forever before there was any kind of progression. He was so smart but just couldn't get any words out! In 2014, Bryce started preschool and got speech therapy at school. He started to make words and friends! 

Bryce is now 6 years old and finishing up Kindergarten at Bedford Elementary in Dearborn Heights, MI. Thanks to Mrs. Mounsey, his wonderful speech teacher, he can almost make sentences out now. On May 13th, before Apraxia Awareness Day they will be doing a mini Walk for Apraxia in honor of Bryce and a few other children at his school battling Apraxia. Team Bryce will also be participating in their 3rd Walk for Apraxia in August and his Aunt KC is now the walk coordinator for the Motor City Walk for Apraxia.

Bryce has an amazing support system in his family, friends and school who are helping him #knockoutapraxia 

Ireland's Fight: Ronda's Story Offers Hope

My daughter Ireland has been in speech since 18 months, she just turned 3 in March. It was maybe 6 months in that our SLP mentioned her suspicion of Apraxia, something I hadn't ever heard of. Like most parents I hit the Internet at first becoming overwhelmed and sad but then I started to focus on the success stories of parents of older children, looking at what treatments worked for them. I one day read the story of Laura Smith and Ronda Rousey. It gave me hope hearing Rhonda's story and I had a face to put with it all.

Ireland has worked so hard over the last year and a half making progress that's amazing everyone. I went to battle through this to make sure that she was getting every hour of speech we could get funded. I got EI to give her more speech than any other kid our case worker or speech therapist had seen. We felt that the more speech and earlier the better. Ireland has done this past year at one point 3 hours a week, averaging 2 and now stepped down to 1 per week. The goal since day one has been to get her at grade level by kindergarten and this looks to be realistic. We are now dealing with the sensory issues and exploring the world of OT.

She is such a happy outgoing girl that makes people smile everywhere we go. We are very open with strangers about her struggle and the hard road of apraxia so that the awareness continues to grow.

Caleb's Fight: Persistence

Caleb is 5 years old.

He was officially diagnosed with apraxia at 3 years old, but suspected at 2 1/2. We just had him re-evaluated in the fall of 2015 and he is now considered to have mild-apraxia. He attends a private preschool 4 days a week and will start kindergarten in a private Classical school in the fall. Right now he has speech therapy 1 day a week with a private therapist.

In the beginning I admit I often had a "feel sorry for myself" attitude. We missed out on the babbling & singing. The "first words" came later & we're definitely celebrated on a grander scale than most. He works so hard for every word, and he has come so far! We used to wonder if we'd ever hear our boy talk & now he doesn't stop talking AND singing!
It has been a long, hard road, but he is a fighter and we couldn't be more proud!!

"A river cuts through a rock not because of its power but its persistence."
-Jim Watkins

Tuesday, April 12, 2016

Cole's Fight: Severe Childhood Apraxia Of Speech

Cole was diagnosed with severe Childhood Apraxia of Speech at 2 years 10 months of age at a local children’s hospital.

I suspected that was the case as weeks of worry and insomnia had led me to that Google diagnosis.  After our evaluation, the Speech Language Pathologist handed us a few copies of ‘What is Dyspraxia?’ type information sheets and advised us to get on the wait list for speech therapy as soon as possible.  I signed onto three wait lists at different branches of the hospital. And waited. And waited. It took us FIVE months to land a spot for twice weekly speech therapy. That five months of waiting for help was incredibly long, but in hindsight it was so valuable. I used that time to scour the Internet for local resources that could help my family face the high cost of treatment. I learned that many private insurers do not cover speech therapy for kids that have a primary diagnosis of Apraxia, or have a limit on a certain number of sessions per year. And in my family’s case, we were uninsured. I found grants that cover 60% of the speech therapy cost. I found a great program at a local university training SLPs in a graduate program. I discovered local non-profits and philanthropic organizations that would help out with speech and occupational therapy. I took a close look at our local school district’s offerings and found a pre-Kindergarten class led by an SLP for kids diagnosed as speech impaired.  Even on a state level, I found programs and scholarships that would help with therapy and school placement. I worried, stress ate, and popped gray hairs. And I learned how to be an advocate for my son.

Cole is now 5 years old and halfway through his speech therapy treatment. His last progress report upgraded his condition to moderate Apraxia.  He is speaking in 6-7 word sentences, and is in the normal range for expressive and receptive speech.  Cole is still having problems with some of the trickier consonants/combos (l, ch, sh, r, v), as well as the rate and intonation of his speech (prosody). He goes to occupational therapy twice weekly at school for handwriting help, and I will be taking him twice weekly over the summer to help out with his anxiety issues that come along with Sensory Modulation Disorder (his second diagnosis).

This afternoon, Cole will have a Kindergarten readiness evaluation at a mainstream private school.  I am nervous but I know that he will do great. He knows his colors, alphabet, and shapes. He can count to 10, then misses a few numbers on the way to 20. He can shakily write his name. And he can read. I mean 64-page Go Dog Go by P.D. Eastman read.  Our Apraxia kids are so smart.  A speech delay does not mean lack of intelligence. Kindergarten will still be challenging for him as he will need to work on writing skills and social skills with the mainstream kids in his class.

With Apraxia, it is a walk to the finish line. Sit in on your child’s speech therapy. Sneak in daily practice in the car and at home. Be the best advocate you can be. Never lose hope; many cases of Childhood Apraxia of Speech resolve by age 8.

Nick's Fight: Finding His Voice

Nick started speech therapy at 10 months old. He was diagnosed with severe verbal apraxia at age 3. At three he had only a few approximations. Once we received the diagnosis I asked the school for more therapy (he was only getting one 20 minute session a week). I was told our school district only offers one session a week. This was the start of our fight! I quoted Wright's Law and provided documents from CASANA. His school upped his speech to 3 times a week!

At three Nick also started private therapy...and our fight continued! Finding an appropriate therapist is hard! Getting the insurance to pay is HARD! Finding grants to help is time consuming! Hearing my son make progress is priceless!!

Nick was a shy non-verbal 3 year old. After years of therapy, two trips to the Kaufman Canter, and switching to a school that specializes in apraxia Nick is persevering. My once shy boy is giving presentations in class, he is a leader in his class, he is reading above grade level!!

He is winning his fight!!!!

Monday, April 11, 2016

Catherine's Fight: "...A Quiet Baby."

Catherine was a quiet baby. She almost never babbled. There were days she wouldn't babble at all. When she was 18 months I mentioned this to the doctor who was concerned, but not overly and said if she still was not talking by 2 she will need to see someone. She was also a late crawler and walker. I had an easy pregnancy and no complications.
At 2 Catherine occasionally said "Dada". A little after she turned 2, people from the PEID (parent education and infant development) program came to evaluate Catherine. She was behind in a few ways, but drastically behind her peers in speech. 

She started receiving speech services thru PEID, but Catherine was resistant because of the incredible difficulty to make even the smallest requested sound. (Pop for example) We started signing with Catherine. She had about 70 signs before she started really talking.

At 3 she moved from the PEID program and into ECSE (early childhood special education) preschool where we were so fortunate to have the first of many great teachers. Catherine was terribly shy and I worried about her, but I didn't have a problem sending her to school. After a few days she wanted to ride the bus, so we let her take it home. One day at school she was eating her packed lunch (because she's an incredibly picky eater) and there was no spoon for applesauce. She finally spoke to her teacher and frustratedly said "poon!" Her teacher still remembers this and I still have the note wrote home that day telling me about it. I waited forever to hear my child say 3 wonderful words "I love you". She told me those words one warm, but not too hot, July afternoon as we were walking back from the park. 

The year was 2013. Yes, that's 3 years ago. She was 4. 

Catherine moved from a SPED only class to an inclusion class for her last year of preschool. I worried about the fact that there would be a whopping 12 kids in her class (almost double what it had been) and what kids would think. But again we were blessed with a great teacher and classmates. I started hearing wonderful things about Catherine coming out of her shell. One day she was even picked up by a fabulous parent and went with a fellow student for a play date. Something she wouldn't have done just a year earlier.

More words started to come from Catherine, but not always intelligibility. With greater language came more frustrations at not being able to say the words and be understood. Catherine moved away from most sports, but kept dancing. She had started ballet which has been a great inclusive sport that helps balance and strengthen her without the pressure of communication. 

Now it was time for KINDERGARTEN. I was lucky enough to already be established at Hugh Mercer and had been scoping out her possible teachers. Can you believe that we landed another wonderful teacher?! Again, I worried about the kids, but Catherine had no problems making friends and the kids seemed to pick up on her speech patterns and errors better than adults sometimes. She blossomed again under the great guidance of her teacher. But life was different soon after kindergarten started and Catherine became a big sister. She's loved her sister from the start, not every minute, but she's been great with her baby sister. Catherine is Roslyn's biggest cheerleader and she gets so excited when Roslyn gets a new skill or word. 

Catherine is in first grade now with a super teacher. There is so much work in first grade and I know second grade will be more. She has an abundance of friends, even kids not in her class! Just a few weeks ago she visited her first preschool teacher and read to the class of four 3 year olds. She is friendly and becoming sassy. 

She still throws a fit or cries when she's not understood, but thankfully not too many tantrums like we once had. She takes things too seriously, but she has a big heart. Catherine is a rule follower and she will correct you; not doing what you're supposed to, she'll tell you, coughed in your hand, she'll tell you to cough into your elbow, and you'll get a big lecture if you're caught smoking. She likes to tell stories, Sometimes I understand most of it. She is starting to sing, sometimes endlessly. She'll ask big questions at bedtime that I don't have anymore brain power to answer. 

Catherine loves cars, Star Wars, and fly guy and books by Mo Willems . She loves the beach, but only really started swimming this past year. She wants to be a doctor., no a teacher, no a dentist, no a mechanic, no an author. Her favorite colors are all the colors, but if you make her choose it's blue and purple. If you ask her what her favorite part of the day was, it was everything. She desperately wants a dog (and I think her dad finally caved tonight so it will happen). 

She loves fast cars and jeeps. She likes to go camping. She'll always point out pretty sunsets. She love polka dots. She has fun going around school after dismissal visiting teachers; She can visit almost all the teachers she's had in one day (thanks to some renovations at her old preschool, her first teacher had to move to our school) and she visits her possible 2nd grade teachers. She has a Pooh bear and a "BaaBaa," a lamb lovey, that she sleeps with almost every night. She wants to play the violin and learn to crochet. I've heard her talk in her sleep. Catherine likes to give hugs. She has a great smile and the prettiest green eyes. 

Catherine is my fighter.

Sunday, April 10, 2016

Emma's Fight: Finding her Voice

We knew that Emma was delayed. My gut instinct said that something was wrong, but I was really great at rationalizing and making excuses for her speech and gross motor delays. We got hooked up with an amazing gift of a SLP who, after a time, felt that Emma was headed for a CAS diagnosis. We began tailoring her thearapy towards that, and recently received the officially official diagnosis that we had been waiting for! Emma is receiving more frequent speech therapy, she attends preschool, and we do lots of practice at home. We continue to push Emma to do the hard work, and she continues to face it head-on. Emma is finding her voice, and through that, I have found mine.

Jason's Fight: Life's Detour, Apraxia

When my son was officially diagnosed with apraxia I was relieved.  Yes, you read that correctly, relieved.  I wasn't relieved my son was diagnosed with a lifelong speech disorder, I was relieved I finally had the answer to all my "why-s" regarding my son's inability to talk.  During the early stages of doctor appointments, Early Intervention evaluations, speech therapy, occupational therapy, ABA therapy, all anybody could say about my son was that he "possibly", "perhaps" "maybe" had one diagnosis or another. 
During one of my son's last speech therapy sessions through our state's EI program, his speech therapist said she thought he had verbal apraxia.  Eight months of more speech therapy in a special education pre-school, private speech therapy, lots of continued research and yet another visit to our neuro-developmental pediatrician brought us to my son's verbal apraxia diagnosis.
The ironic thing is, my son's apraxia diagnosis hasn't brought many changes.  What is different though is now I know what he is up against, what WE are up against as a family.  When I was initially told it was thought my son had verbal apraxia, I could count on my hand how many words my son could say (It was 4).  Today, through lots of hard work, many many hours of speech therapy in school, outside of school and at home, my son CAN communicate verbally, using small sentences and I hang on his every word. 

 I know this life detour of verbal apraxia is just that, a detour.  Detours don't mean you don't make it to the destination you are traveling towards, it just means you need to take different roads to get there.  I am proud of my son and all the other apraxia heroes out there who show us each and every day that hard work, determination and courage pave the way on their road to success. 

Charlotte's Fight: Apraxia is nothing but a battle scar

Charlotte is the youngest of three girls and is almost 3 years old. She has fought hard since her birth. She was born at 30 weeks weighing 2lbs.5 oz and having almost no blood in her body. She suffered a Fetomaternal hemmorrhage where she lost 80 percent of her blood volume in utero. Charlotte’s neonatologists said she would not survive thru the night. All her blood levels were critical, she was in multiorgan failure, and she coded multiple times and was at risk of heart failure.  With the doctors help, multiple blood exchanges and her strong spirit she managed to pull through and spent 2 ½ months in the NICU.

We were finally able to bring our sweet girl home and celebrate being together again as a family.  She started in early intervention right out of the NICU where she received PT, OT, Speech, and feeding therapy. She was now on the right track for hitting all her milestones; a little behind, but not bad for a girl with her birth history.  By one and a half she had 2 words “duck” and “that”. I thought yay another milestone met. Well then after 3 months of always being able to say those words she lost them. I did not know she could lose words .I mentioned this to her early intervention therapist who we love and had worked with back in the NICU, and she too was concerned about this. Charlotte was soon evaluated and diagnosed with severe apraxia.

  At Charlotte’s birth we were fighting and hoping for survival, and now at almost 3 we are fighting for her words and sounds. She is now in intensive therapy. It is exhausting some weeks but worth it.  We will continue to fight for her words, but until then I will not take anything for granted.  You see I was not supposed to get any milestones with this girl so I celebrate everything.  Apraxia is just Charlotte’s battle scar. She has won many battles for such a young girl. Every day is a struggle and I am thankful for all her speech therapists that are helping us deal with Apraxia.  

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Friday, April 8, 2016

Stella Rose's Fight: Our Journey with Apraxia

Our daughter is almost 3 and has had her diagnosis for 8 months now. We always knew something wasn't quite right with her. She struggled with nursing, then refused to eat solids until after age one. She was always an excessive drooler. She babbled a lot as a baby but always the same sounds never any new ones. Her receptive language are unbelievable and her intelligence astounds me daily, however she still wasn't talking or even attempting to by age two. No mommy or daddy or anything. My heart ached to hear that word "mommy". I had dreamed of that word for many, many years after having difficulty conceiving.
I knew in my heart something wasn't right.
Other babies were saying that at 8 or 9 months. My child wasn't saying anything or even attempting and she was almost 2. We were missing something.
That's when I called birth to three. Stella began taking speech in September of 2015. At the time she only would use 2 different sounds for everything. She would pantomime or just show me what she wanted or needed.
People would tell me over and over she will talk when she's ready or has something to say. And my oh so favorite (sarcasm ) "once she starts talking you won't get her to shut up".
If I hear that one more time I think I might explode.
When people ask her questions and she can't answer she looks to me for help and I see the sadness in her eyes. For a while I would just say she can't talk and walk away now I answer politely for her or slowly break down the words so she can say them, words are coming more now. We are only at the beginning of our journey to find her voice and we work hard everyday. We have been blessed to have 2 amazing speech pathologists who have helped our daughter find a voice and work with all of us. I say us because this is not just her fight it's all of us as a family's fight. We have been learning right beside her and will continue to do so. We are so incredibly proud of our little girl. I am amazed at her confidence, her determination, and her love of life everyday. In this short 8months she now can say countless words and even say short 2-3 word simple sentences.

She works hard and has the determination every moment of her day to speak and that makes me the proudest Mommy around.

Mahri's Fight: Finding Her Voice

Mahri is my sweet, smart 10 year old daughter.
She was diagnosed with Global Dyspraxia along with a couple more disabilities at the age of 3. Our journey as most parents with children with special needs has had plenty of highs and lows. Mahri has been in speech therapy and occupational therapy for most of her life. She continues to show growth in all areas of her life.
Mahri is determined to be heard. Between her few words, see sign, hand gesture, facial expressions and sometimes her iPad she uses ALL ways to communicate with the world she lives in.
I have learned as her mother to live in the moment. And to embrace life for what it is.

Mahri is my beautiful, happy girl not defined by her disabilities but by her ability!

Ty's Fight: To Be Heard

Ty began his journey almost 5 years ago. He was a very bright boy who I noticed at an early age was not meeting his communication milestones. I am a special needs teacher at the preschool level so I immediately went into my teacher mode and began providing my son any means needed to communicate.

I made him a picture communication book of his foods, drinks, toys, movies, and other favorite items. I also made Velcro boards on my refrigerator and cupboard and taught him how to give me a picture for something he wanted. I also went as far as to teach him some American sign language. All these things gave him a small voice to get through the frustration. These items took time and didn't always satisfy him. He would become so frustrated he would bang his head on the floor or the wall.

I took him to the pediatrician at 18 months old and was told he may still be a late talker to wait until he was 2 to call Early Intervention. My gut told me to call that day so I did! Being in my field of work I knew he had Apraxia and understood it would be a while before I would get that diagnosis. I had wonderful speech therapist who were aware or understood how to deliver the appropriate services needed beginning at 20 months old. There were times he would have a word and then loose it. It took time and practice but he would regain it, so never loose faith! He has been followed by Children's Hospital Speech and Language team since he was 2.6 and was officially diagnosed with Apraxia at the age of 4.

At 4.10 Ty is a verbal communicator in a public school preschool program. He receives Speech 3 times a week and is making his voice loud and clear! Being a part of the CASANA groups was the most helpful to find other parents who understood! Reach out join a Walk! There were nights I would cry to sleep rubbing his back praying I would one day hear his wants and needs! Never give up because your child will get there in their own way and in their own time! Always believe and following your gut!

Austin's Fight: Austin's Journey with Apraxia of Speech

Austin is the youngest of my 4 children he will be 4 in July, my oldest being 26 so I have been rising children for a long time, I noticed he wasn't talking as soon or as clearly as my other children did so I put him in day care part time to give him a little push.  I was approached by the school saying they had speech therapy and they thought he might benefit from it, I took him to his dr who also though nothing was wrong with Austin that he would catch on in his own time but we both agreed speech couldn't hurt so he started receiving it in school. 

 After several months of no improvement I called and spoke to his speech therapist and she was disappointed in his improvement as well but she thought he might have Apraxia but she wasn't sure since she said she was really unfamiliar with it and maybe I should have him tested.  

So to finally prove to me and everyone else that there was nothing wrong with my son I made and appointment at all children's hospital even had to wait almost 2 months for this appointment.  

On Monday 4-4-2016 Austin was tested for an hour and 45 minutes to only be told he has Apraxia and Expressive Language Disorder and will need extensive therapy a minimum of 3-5 times a week.  I am still trying to process this and feel like I truly let my son down and now will move heaven and earth to help my little boy. I think the scariest  part for me is not knowing what the out come in the end will be I have never heard of Apraxia before and everything I have read breaks my heart knowing the true struggle that him and everyone with it  faces on a daily basis.  

My son is a true fighter and if I don't understand what hes saying he finds some way to show me what he wants so I am going to learn from him and fight to help him over come any obstacle he may face with the same determination he has.