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.