Thursday, May 12, 2016

Liam's Fight: All Day Every Day

Liam is 5 years old and has been battling apraxia. He is such a happy loving little boy and he definitely doesn't let his communication bring him down or frustrate him..he tries all day every day to say new words and sounds and he has come a long way since his diagnosis!

Friday, May 6, 2016

Luke Michael's Fight: Knock Out Apraxia!

As with many others living with apraxia, every day marks the beginning of a new challenge, with intensive therapeutic work to be tackled and hard-earned triumphs celebrated at each day's end for for my "Little Prince" Luke Michael. 

Luke Michael experienced a 'normal' full-term birth, albeit with 'moderate' meconium aspiration syndrome, treated with a sense of urgency inpatient, then more routinely at home by his father (I was too nervous) during the first couple weeks. Immediately thereafter, infancy and early toddlerhood entailed assorted medical diagnoses and teams of specialists (for the most part, gifted and loving providers whose relationship and expertise we have come to cherish):  GERD, congenital hypotonia, failure to thrive 😭😰, multiple food protein allergies/anaphylaxis, FPIES/hypovolemic shock, and asthma. 

At 1.5 years old, Luke, following several long agonizing months spent on an exclusive and extremely expensive, not to mention physically grueling, amino acid-based elemental diet (yay Neocate! Boo insurance company mandates on G-tubes, but further yays for our amazing insurance nurse advocates, dedicated dietician and allergist, and especially understanding local support group parents), multiple hospitalizations, surgeries and biopsies, was finally beginning to feel well enough to start acknowledging and engaging with his family and even occasionally the outside world. 

At about 20 months old we were introduced to the term 'developmental delay', followed by a multitude of acronyms:  Early Intervention (EI), CDSA, IFSP; PECS, PROMPT, Kaufman; private, clinic-based therapies quickly (sadly) deemed 'medically necessary' (speech, gross & fine motor, and, most recently dx'd, ocular) ruled our schedule,...that is on the rare occasions when therapies for Luke's older and, incidentally autistic, brother didn't take precedence. Thus began an ongoing and current lifestyle of assorted speech, physical, occupational and vision therapies. Not to mention neurologist, cardiologist, immunologist, dietician, psychologist, psychiatrist visits, hard to establish but much cherished routine in-home therapists, social workers, ABA practitioner interventions/ visitations; and of course carefully (by this point, immensely grateful for the ability, I had quit my career) stay at home Mommy-designed and painstakingly-coordinated metrics, protocols and itinerary, along with an intensely dedicated and amazingly capable in-home support system, led by the best Daddy/husband ever, a truly amazing brother, and a remarkable service dog-in-training, "Fenway".

And so here we are. Luke Michael has just turned 4 and has made immense progress and continues to work hard. Speech goals are more articulation than motor-based, while global apraxia diagnoses and corresponding planned therapies in gross, fine and ocular motor areas emerge as priorities. We are grateful for our knowledge of Luke's areas of need (half the battle) as well as our ability to navigate procurement of public interventions and to supplement private ones accordingly. 

We hope sharing Luke's story will shed some light on apraxia and look forward to transforming experience into a meaningful opportunity for others in the future. 

Deegan's Fight: Apraxia? We got this!!!

Deegan wasn't much of a cooer when he was a baby and but loved to watch everything. He was very easy going and just adored his big sister. Deegan crawled and walked at normal age and said his first word (Dada) when he was 9 months. Never had any concerns at this point.
Once Deegan was 1 1/2 yrs old I started to notice that he was not putting two word phrases together or saying a lot of words. His older sister did everything early and could have a full conversation when she was his age. I know all kids are different and everyone always told me that boys are late bloomers so I tried not to compare them.
Once Deegan turned 2 I discussed my concerns with his Dr and she agreed that it didn't hurt to have him get checked out by a pathologist. I drug my feet on making an appointment because I kept telling myself that he's a boy, the 2nd child so his sister always talks for him, and that he's the baby so we were not as strict on him using his words as we were with his sister. He was a great communicator in every other way but verbal. You knew he understood what you were telling him so maybe he just needed more time right? Perhaps if I knew about Apraxia I could have identified it sooner.
I finally got Deegan in for an evaluation at 26 months where it was determined that he did have a speech delay. After going back and forth with insurance and our county program Deegan started speech therapy at 2 1/2 yrs old 2 days a week. At this point he had maybe 10 words that he would say but never together. Deegan was diagnosed with severe Childhood Apraxia of Speech at 2 yrs 10 months after being in speech therapy for 4 months.
Deegan just celebrated his 3rd birthday and has come a long way. He is working hard and has expanded his vocabulary drastically. He is now using 3 word sentences!! 

There is still a long road ahead but with the love and support he will get through this and it will only make him stronger!

Monday, May 2, 2016

Will's Fight: He Will Find A Way

A friend, who happen to be an EI therapist, was over playing with our then 15 month old and turned to me and said, in the nicest of ways, "you may want to get him evaluated". Will was always very active, running by 9 month, incredibly curious, and always making some sort of noise, but never talking. We spoke to the pediatrician, who agreed, and had Will evaluated. He was eligible for services.

We started treatment in December of 2013 with 2 of the best therapist we could ask for. They were so patient and kind to him. At this point we didn't know our little one had a speech issue, we thought he had some behavioral issues and that he was just a late talker. After a few months one of the therapists suggested that we look into having him evaluated for Speech Apraxia. It was a Friday evening, the doctors office was closed and our only option for educating ourselves about Apraxia was the Internet. Everyone knows the Internet is a scary place to go for medical information but I went there anyway. Dumb idea, after just minutes I was convinced that my sweet happy beautiful little boy would never speak. I cried for days. He'd grunt and babble but no words. I remember getting so depressed at times knowing he was telling me something but having no idea what he was saying, it broke my heart.

Little by little the words started to come, and with the words came his personality came. He started to act out, but in the cutest of ways. The first time I really knew he was going to be a jokester was when the therapist was asking him to say car and he continued to say truck. She would change her inflection and he would copy it all the while saying truck and grinning that sly 'I'm so funny' grin of his.

Just before he turned 3 we moved. We got him started in a new daycare and set up for the preschool program through the school district. Those two programs have done wonders for him. He just turned 4 and is understood by strangers about 85% of the time. He loves going to school, loves to play all the therapy based games we trick him into playing/learning and he has friends. He is still so funny and incredibly curious and he has a memory like no other.

Our boy is kicking butt and totally Knocking Out Apraxia.

Dylan's Fight: Fighting For Him And His Voice

My son Dylan was 18 months when I noticed he didn't talk as well as the others around him. I got help right away and we tried so hard to get him to talk right. My parents said I wasn't working enough with him, the speech therapist said he was just lazy, then he turned three and nothing was changing, he would say words but broken and screamed a lot and pointed.

He started public school special education and he took off with his words! Having speech everyday really helped him start to talk, he is now four and half and he is such a social butterfly, he loves to talk, some may not understand him totally but the family does and that is all that counts. During his IEP the speech therapist at his school talked about Apraxia and I went home and did some major research. I was in tears knowing that most things we have dealt with is the Apraxia...I don't feel like a failure as a parent anymore, I know my son and I am his voice.

Now my youngest son is in speech and they think he has apraxia as well. I'm not sure how or why but I don't care, I know what to do and how much support I have in my corner I will also be his voice and he will know that I fought for him and his voice.

Sunday, May 1, 2016

Owen's Fight: Apraxia Will Not Define Him

Facing the hard truth that my son has a disability has been excruciatingly difficult. Just a few short years ago, I was celebrating the birth of my precious little boy. From the moment I first held him and looked into those sweet little eyes, I knew I was completely in love. That little boy had my heart and I couldn’t be happier. From his perfect little toes to his adorable red hair, he was so perfect! Little did I know what our future would hold.
Scott and I knew something wasn’t quite right when Owen was very young. He didn’t babble much as a baby and by the time his first birthday rolled around, we were still waiting on his first word. Like most parents, we couldn’t wait to hear his little voice and joked about whether it would be mama or dada. Deep down…I really didn’t care, I just needed to hear him speak.
We hoped it was just a delay and decided to get him started with speech therapy at 18 months. We were very encouraged by other parents and his therapist. They would say things like, “He’s so close-he will be talking before you know it.” and “My son just woke up one day and was talking in sentences.” I wanted so badly to believe what they were saying but deep down I knew we were facing something bigger.
Months went by and we weren’t seeing any improvement. I began to feel lost because I didn’t know how to help my son. Scott and I didn’t talk about it much. I think we both felt if we said it out loud, we would have to come face to face with the reality that there might be something wrong.
By the time we were celebrating Owen’s 2nd birthday, he only  had 2 words in his vocabulary-mama (I won!) and mine. For a 2 year old, I can’t think of 2 better words. Scott and I knew we weren’t getting anywhere with his current speech therapist and decided it was time to go a different direction. I began to pray diligently that God would direct us to someone that could give us answers and help our sweet boy. Thankfully, he outdid Himself and led us to a wonderful SLP. She began working with him in January and has recently told us that she plans to diagnose him with Childhood Apraxia of Speech (CAS). Although, we had done research and felt in our hearts this was most likely the diagnosis Owen would receive, it was still very hard to hear those words. As a parent, it hurts to know your child is going to struggle.

Owen is a fun, loving, and energetic little boy. He’s not letting this slow him down and I will do my best not to let this define him. He is so much more than a child with apraxia. I know God has a plan for Owen and His plan is much greater than anything I could ever hope or dream for his future.
“Hardships often prepare ordinary people for an extraordinary destiny.”
 – CS Lewis

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.