What Would Taylor Say? – Meet Crystal

I’m honored to introduce Crystal – a mom to a six year old girl with apraxia. I asked Crystal to contribute to What Would Gia Say?, because she and her daughter represent hope; something I and so many others are searching for everyday. They also represent a later stage of therapy for apraxia, that took a lot of fight and heartache to get to. This family is truly inspirational. Click here to learn more about Crystal, and how we came to know one another.

by Crystal, Contributing Writer

From about three months of age, my husband and I knew something just wasn’t developmentally right with our daughter.

Taylor, who is our third child, was not developing like our first two kids. People say not to compare your children, but it’s hard not to; comparing them may be the reason we knew something was off. Going against my motherly instinct, my husband and I decided to let things go and hope that Taylor would just suddenly, “catch-up” developmentally.

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Months began to go by, and still, Taylor did not coo, did not babble, and was not meeting any of the developmental milestones.

After an evaluation from a near-by children’s developmental center, it was determined that Taylor, at 1.5 years old, was considered to be at 8 months old developmentally. After reviewing the results of the evaluations, the center recommended Taylor be seen for speech and cognitive therapy.

I asked myself, “What did I do wrong? Why is she so far behind? What piece of the puzzle was I missing?”.

At her two year wellness visit, Taylor’s doctor wasn’t overly concerned. He said it was probably because she was our third child. “Why would she talk?”, he stated, “Everyone does everything for her and speaks for her”. He explained that if Taylor was making progress, even if it was slow, that it was okay to just watch her grow for now. He did however, recommend we have her hearing tested along with a cat scan to make sure all the normal structures of the brain had developed properly.

Since Taylor was making slight progress, and the fact that a CT would expose her to an abundance of radiation, we opted out of the test.

So we continued with her therapy hoping it was just a delay.

After little progress and many speech sessions, Taylor’s speech language pathologist said, “I think Taylor has what is called apraxia. Have you heard of it?”  At the time, I had never heard the term “apraxia,” so I had no idea what it was.

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Taylor with Erin Dona (from Childrens Developmental Center in Casper, WY). Erin worked with Taylor starting at age two, up until our move to Arizona.

Until that moment, I was thinking that Taylor was just severely developmentally delayed in her speech, but deep down I knew something was different. My second child had a speech delay and needed help with articulation but this was completely different. Taylor was two and a half and completely non-verbal. I anticipated her needs and could communicate with her using the  20-30 signs that she had. She wanted so desperately to speak, but the moment she opened her mouth, no words came out. Her SLP was working with bubbles at the time and it seemed almost impossible for Taylor to say “pop”.

I ran home and instantly researched apraxia.

After reviewing the signs and symptoms, I quickly realized that my daughter is a child who suffers from childhood apraxia of speech.

I was so relieved to finally feel like someone knew what they were talking about. Until then, her pediatrician, ENT, and other doctors and therapists seemed clueless as to what might be happening with Taylor.

I wanted my child to be able to sing “Twinkle, Twinkle, Little Star” before bedtime, or let me know what her birthday wishes were. I didn’t know if that day would ever come.

Soon after Taylor’s SLP suggested she had apraxia, we moved.

After looking long and hard and experiencing many SLPs trying to tell my daughter to say such things as “Mom” or “Dad”, and getting frustrated with her because she wouldn’t perform for them, we finally found our fit at the Foundations Developmental House (FDH).

FDH specializes in apraxia diagnosis. What a relief! It was here that we learned how uncommon it is for apraxia to be the only diagnosis, and that it often times is a secondary diagnosis. This explained so much.

Taylor began therapy with a new SLP, Jeremy. He was the best thing for Taylor and I. Jeremy worked with Taylor two days a week for two years, making huge strides.

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Taylor and Jeremy Legaspi (from Foundations Developmental House in Chandler, AZ). Jeremy worked with Taylor for two years starting at the age of three.

Jeremy was always so patient with Taylor. When she had her “moments”, he would refer to them as “Taylorisms”, and he would just keep going.

There were so many moments that were difficult and challenging for Taylor and our family as a whole. I look forward to sharing more, and giving hope to other apraxia families.

What Would Nathan Say? – Meet Kelly

by Kelly, Contributing Writer

Our beginning has been nothing short of rough. I was induced with Nathan one week after he was due. He appeared to be a healthy 7.12 pound baby. Unlike most other babies born with Cerebral Palsy, he wasn’t premature nor did he require any oxygen after birth.

Within an hour of being born, my gut told me something was wrong with Nathan. He would latch while nursing, but within seconds he would pull off and scream. After nursing my first two kids, I knew what I was doing and just felt something wasn’t right. This cycle continued for over 12 hours. I repeatedly told the nurses, he won’t stop crying there must be something wrong.

A year later, after I requested all of his hospital records, I would learn that those nurses were making notes in my chart that I was making no attempt to comfort him. I sure would love to give those nurses a piece of my mind. Had they really listened to me instead of making judgments, Nathan might not have suffered so much in his first year of life. After exactly 24 hours in the hospital, I asked to please leave as I felt there was nobody there helping me anyway.

Those first weeks were harsh and scary. The nursing problems continued. Nathan developed what the doctor called breastfeeding jaundice. He was so yellow; I have a hard time looking at the pictures of him like that. After several appointments and telling the pediatrician my concerns, he said Nathan was failing to thrive.

We took him in for weekly weight checks until he started to put on more weight. Nathan spent most of his days crying for hours. I was told by the doctor it was colic. His exact words were, “once he is 3 months old he will be perfect”. Again, the words I’d like to tell him now are very colorful!

After 3 months of doing everything possible to get Nathan to nurse, I quit. This broke my heart, as I knew how much he needed it. He took to the bottle much easier than he did nursing. We thought our problems were behind us, they weren’t.

Nathan developed extreme reflux. At about six months old, I decided to start him on solid foods. There seemed to be something off when I would feed him. Every time I put the spoon in his mouth he would also shove his hands in his mouth. While this is somewhat typical, he did it excessively. It was more than what was considered normal. So finally at 8 months old, Nathan started Occupational Therapy for feeding.

Everyone from friends, family, and doctors were telling me he will be fine. I honestly felt deep down inside, there was really something wrong. Hearing everyone’s reassurance just made me feel like I was crazy.

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While Nathan did sit up at the right age, he wasnt hitting any other major milestones. At 10 months old, he started physical therapy in addition to occupational therapy for issues outside of feeding. By the time Nathan was 1 year-old, he wasn’t crawling or walking. To me that justified, there was in fact something seriously wrong.

Nathan never really babbled, nor did he ever put things in his mouth as all babies do. Still, everyone in my life said he was just a “late bloomer” and he’ll catch up. As months passed, he didn’t. In addition, his head size began to fall off the charts. Head size says a lot about a child. Too big or too small is sometimes a red flag for concern.

In March of 2012, Nathan was sedated and given an MRI. Weeks later, his neurologist told me over the phone, that Nathan had a slightly enlarged right ventricle and decreased white matter. He then proceeded to tell me that this would fall under the umbrella term of Cerebral Palsy. Anytime there is an abnormality of the brain it can be classified as such.

There it was, the explanation I thought all this time had existed. As I researched the Internet for Cerebral Palsy I came to the realization that Nathan wasn’t the typical CP case. By this time he was already walking and his muscles didn’t seem to be that weak. To this day Nathan doesn’t appear to be a typical CP kid, as he has never been impacted by a muscle related issue. So I guess that’s one win. I did gladly accept the diagnosis, as this new label opened the door for him to receive more services.

After a year of weekly therapies, it was clear Nathan wasn’t making any improvement in speech. During a recheck with his feeding therapist, she mentioned Apraxia and asked me if anyone had ever mentioned that. Back to the researching I went. When I read the description of Childhood Apraxia of Speech, I knew this was what Nathan had.

The couple words that Nathan had, he would lose for months at time. That symptom of losing words really stuck out to me. The writing was on the wall; it wasn’t the Cerebral Palsy stopping him from talking, it was the Apraxia.

I went on to find the most trained and seasoned SLP for Apraxia, that was somewhat close to our area. We’ve been seeing her four times a week for two years now. Nathan is one of the most severe cases she has ever treated.

Even with years of treatment, Nathan still can’t talk. As he has hit the age of 5, the chance of him ever having speech as his primary form of communication is quickly dwindling. Every day is battle. Im sharing Nathan’s story because I want to let parents of other little warriors know that they aren’t alone. Not everyone’s fight can be won but we won’t give up trying.