Tag Archives: Apraxia

Monday Musings: Playing the hand you’re dealt

28 Oct
I've always believed in playing the hand you're dealt in life, to the best of your ability.

I’ve always believed in playing the hand you’re dealt in life, to the best of your ability.

After last week’s Monday Musings post, “Celebrating the difference a year can make,” I received so many emails and messages of support. They all meant so much to me.

One in particular struck close to home as another mom spoke about her own family’s challenges with food-related issues, and how pursuing a new diet and other life changes had made all the difference for their family in the span of a year also.

Another mom-to-be spoke about growing up with a parent who had severe food allergies, and how hard that was, hoping their little one wouldn’t have food allergies.

Yet another congratulated us on our hard work as parents, since she knew first-hand what we’d gone through last year; how hard we fought to find out what was making our daughter so sick and what we could do to help her.

Last year was tough, and it was probably our toughest year yet, although I can think of a close second, a few years back, and another about three years before, and a few others before that. We’ve had lots of challenges with our three kids and their health issues, ranging from the stomach problems to childhood-onset migraines, and even the lesser-known but very challenging abdominal migraines, which are prevalent in girls ages 5-12 with a family history of migraines. Times three, starting at five years old.

It’s a lot to deal with, a lot to navigate as a parent, but I’ve always believed that you have to play the hand you’re dealt in life, and I try not to let those challenges be the thing that defines us as a family. We work hard to advocate for our kids 100% of the time and we work very hard to persevere and rise above those challenges, no matter how hard it is. I used to say that Caroline never really felt good, ever, for years, and most especially throughout most of last year, but that overall, you’d never know it. You wouldn’t know how sick she was feeling most of the time, except on her very worst days when she was so sick she could barely move. And throughout that time, she rose above it and accomplished so much. She pushed through a whole lot of pain, a whole lot of the time.

She’s my hero.

However, I know we’re not the only ones who have had our share of struggles. I know so many parents whose children have challenges as well, whether medical challenges, educational challenges, or whatever their challenges may be. I know we’re not alone, and I know there are lots of families out there, playing the hands they’ve been dealt, working hard to advocate for their kids with doctors, with teachers, in their kitchens, whatever it takes.

You’re all my heroes as well.

I know people dealing with everything and anything from Apraxia to ADHD to food allergies to Autism and everything in between.

It’s not easy. It’s exhausting and overwhelming, but you’re doing it.

A friend of mine from high school has a child with PANDAS, an often unrecognized diagnosis, and one that is life-changing in many ways, including in diet. To say it is a challenging issue to deal with is an understatement. But, she’s doing it, as a family they’re doing it, and I’m so proud of her. I watch as she takes the bull by the horns, not stopping until she has gotten the best answers, best treatment for her son. Again, It’s not easy by any stretch of the imagination, but she’s another parent who is just playing the hand she’s been dealt. I was thrilled a few weeks back, when I saw that she’d petitioned to have a PANDAS Awareness Day made official here in our state. She’s working hard to help her own child and so many others. I know that it makes me happy when something I’ve learned or done when navigating through our own kids’ issues, has helped other people we know who are struggling with the same or similar issues. I know that my friend is helping so many others through her own journey with PANDAS.

So today, I’m thinking of all of you.

It’s a struggle, and sometimes  it seems like you’ll never make it through another day, week or school year, or that you can’t put your child through another medical test, another hours-long educational evaluation, another new doctor’s appointment or participate in another meeting at school.

It’s a lot, but you’re all doing it, we all are, and some day your children will look back and wonder how you did it all, and they’ll be so thankful that you did.

Be strong, hang in there, keep playing your hand, and continue to be my heroes.

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Monday Musings: Apraxia Awareness Day

13 May
Tuesday is Apraxia Awareness Day

Tuesday is Apraxia Awareness Day

Tomorrow is Apraxia Awareness Day.

I thought I’d use my post today to do just that: make you aware of Apraxia of Speech, because this cause is something that means a lot to me.

If you have not heard of Apraxia of Speech before, it is defined on the American Speech-Language-Hearing Association’s website as:

“a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.”

Although my daughters do not have Apraxia themselves, we have two members of our extended family-one on each side- who do. Therefore, we do have some experience with the disorder. Additionally, two out of three of my girls needed speech and language therapy from age three through early elementary school age. And so, the speech and language disorder arena is one which we are pretty familiar with.

As a parent, I remember the frustration both of my daughters would experience as they tried to communicate their thoughts to us, with speech that couldn’t do the job they wanted it to do. I can clearly see the look on people’s faces when they’d ask one of them a question but not understand the answer that came out. I can remember trying to “translate” for them and not always being correct in guessing what it was they were trying to say. I remember the many weeks, days and hours spent bringing them to speech therapy twice a week and working with them at home on their “homework,” working in front of a mirror, playing “games,” listening to them practice their sounds, helping them to reinforce what they were learning in therapy, for years and years.It was a long road for them, but I am happy now when I hear them chattering away.

Apraxia kids experience frustration as well, as they try to get what they want to say, from their brain and out. They too, have hours and hours of therapy to help them.  For many Apraxia kids, the disorder is a life-long struggle. For others, they may see better success with treatment. Every child is different.

Awareness of Apraxia helps you to understand children who may have the disorder, but it may also help you identify it in someone you know, whether you are a parent, a teacher, or a relative. Early intervention is critical and evaluation followed by treatment is essential to helping these children find their speech.

If you are wondering what some of the signs and symptoms of Apraxia of Speech are, here’s the list I’ve copied and pasted from the American Speech-Language-Hearing Association’s website, but keep in mind that every child is an individual and no two children’s cases of Apraxia are exactly the same:

A Very Young Child

  • Does not coo or babble as an infant
  • First words are late, and they may be missing sounds
  • Only a few different consonant and vowel sounds
  • Problems combining sounds; may show long pauses between sounds
  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
  • May have problems eating

An Older Child

  • Makes inconsistent sound errors that are not the result of immaturity
  • Can understand language much better than he or she can talk
  • Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
  • Has more difficulty saying longer words or phrases clearly than shorter ones
  • Appears to have more difficulty when he or she is anxious
  • Is hard to understand, especially for an unfamiliar listener
  • Sounds choppy, monotonous, or stresses the wrong syllable or word

Potential Other Problems

  • Delayed language development
  • Other expressive language problems like word order confusions and word recall
  • Difficulties with fine motor movement/coordination
  • Over sensitive (hypersensitive) or under sensitive (hyposensitive) in their mouths (e.g., may not like toothbrushing or crunchy foods, may not be able to identify an object in their mouth through touch)
  • Children with CAS or other speech problems may have problems when learning to read, spell, and write

For more information on Apraxia, visit:

American Speech-Language Hearing Association

CASANA The Childhood Apraxia of Speech Association of North America

You can also find information on Pinterest

Follow CASANA on Facebook

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