Jake's Journey with Apraxia

And the Friends We've Met Along the Way

by Amber, Contributing Writer

Last Thursday was Apraxia Awareness Day. It was awesome to see all of the support being shown for our children. My own children no longer have a diagnosis of apraxia, but my Facebook news feed still filled with pictures of family and friends wearing blue and white to continue to show support for all children with apraxia. It was an overwhelming feeling to see that we still have such a great support system, even without having the diagnosis anymore.

Finding a great support system is so important when a family member is given any type of diagnosis. When Cason first received an apraxia diagnosis several years ago, I was able to find support in many different ways.

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There are family and friends that I can always count on for support. They don’t always completely understand the situation, but they understand that support and encouragement is needed. They send positive messages and celebrate the small steps as well as the big steps. They are a listening ear and a shoulder to cry on.

We were very fortunate to find a supportive Developmental Pediatrician that was very knowledgeable in apraxia and knew how to get our insurance to give the boys the amount/type of therapy they needed. Anytime we received a denial, we knew we could count on him to get it reversed. We only saw our Developmental Pediatrician once a year, but we contacted him and his office several times throughout the year. They always went above and beyond to help us out. Not all parents I know have that time of support from the medical field, so I was always grateful.

Our speech therapists were supportive on a personal level. They were truly invested in our kids and wanted the best for them. We could always count on them for encouragement and understanding. There were a few occasions when I broke down in the speech office and cried, and they knew what I was feeling and had tears in their own eyes. We moved across the country several months ago, and our previous therapists still show an interested in the boys and check in on them via email.

Which brings me to another support system that has been huge in my life….the virtual friends I have made along the way. I often think how lost I would have been in the beginning of Cason’s diagnosis if I didn’t have the internet. I’m a stay at home mom and a military wife. I was still new to the area we were living in and had made only a few close friends when we first received an apraxia diagnosis. Nobody I knew personally had experience with apraxia.

I did what most of us do nowadays; I headed to the internet. The world wide web definitely has its negatives, but there are also so many positives. Not only can we gain information, but we can also meet others that have/are experiencing the same things.
I joined a Facebook group set up by CASANA for parents of children with apraxia. Post after post was from parents that had the same concerns, questions, and worries that I was facing. The comments on those posts were from parents that had actually “been there, done that.” So it wasn’t just someone trying to understand. It was people that actual did understand.

I also read several blogs written by parents of children with apraxia. I watched YouTube videos posted by other parents. The videos were helpful for me to see what therapy might work for my own child.

The parents I met online became a virtual support group. They were living the same situations or had already gone through it. They “got it” to a degree that my other support systems didn’t because it was their reality also.

Even though Cason and Callen no longer have an apraxia diagnosis, I still have the same support systems. That was made obvious to me last week as my news feed had picture after picture of people wearing blue and white.

We will always be grateful for the support we have been shown, and we will continue to show our support towards others. Our boys have found their voice, and our family will always participate in Apraxia Awareness Day because every child deserves a voice.

Many thanks to Sheila over at the new apraxia blog What Would Gia Say? for sharing this beautiful poem about her sweet girl. I also love the Apraxia Awareness video she published last week and invite you to check it out. Enjoy your Sunday, blog friends.

What Would Gia Say?

What would Gia say
If I told her she was smart
If I told her to stand up, stand out
You set yourself apart

What would Gia say
If I told her she was brave
If I told her to look forward
Walk the path that I will pave

What would Gia say
If I told her she was strong
If I told her don’t give up your fight
This journey will be long

What would Gia say
If I told her I was proud
If I told her keep on reaching
Stick your head above the cloud

What would Gia say
If I told her there was hope
If I told her she will conquer this
Together we will cope

These thoughts of adoration
New feelings everyday
Often times I ask myself
What would Gia say?

Today marks the third Apraxia Awareness Day. What do you know about apraxia? Are you just starting out? Settled in with a therapy routine? Does your grandchild, niece, nephew, or friend’s child have this diagnosis?

The following are a few facts about childhood apraxia of speech (CAS):

  • Apraxia is a neurological motor speech disorder where the child’s brain knows what to say, but the mouth, tongue, and jaw do not cooperate. Frequent, intense therapy is required in order to strengthen the brain pathways necessary for speech to occur.
  • Apraxia comes in all shapes and sizes. Some kids have verbal apraxia, which only affects speech. Other children have global apraxia, which affects other motor skills such as catching a ball or running. In other words, the brain knows what to do, but is not able to communicate that message to the legs or arms.
  • Sometimes apraxia is the only disorder a child has, but other times it presents itself with autism, downs syndrome, sensory processing disorder, and a host of others.
  • Progress varies from child to child. I’ve heard of children getting a diagnosis at age 2.5 and speaking at an age appropriate level a year later. I’ve also heard of kids remaining in speech therapy through elementary/middle school.
  • The current apraxia of speech rates are sketchy – 1 or 2 children per 1,000 – but nothing definitive. The CDC has not released any official stats specifically on apraxia.
  • Symptoms include: Quiet baby who does not babble, first words are late and limited, can understand what is being said much better than he/she can talk, and inconsistent speech errors.

My journey with apraxia would not have been the same without the warrior moms and their sweet children who have walked along with us. Here’s a little more about a few of these these special kiddos …

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Kate
Age: 10 years and 1 month
Grade: 4th
Diagnosed: 2.6 years old
Speech Therapy: Age 18 months to 6 years old
Frequency of Speech Therapy: 1x/week from 18 months to 21 months and 2x/week from 2.6 years old to 4.0 years old. Then we added feeding therapy for a total of 3x/week for about 6 months, dropping feeding therapy and one session of speech therapy, but adding OT until Kate reached about 6 years old.
Type of Speech Therapy: Kaufman, home drills, natural environment, and speech-intensive preschool
Additional Diagnosis: AD/HD
Words of Wisdom: “If you think your child has apraxia, don’t worry…it’s not that serious.” ~Kate, age 10
Mama’s Words of Wisdom: ”Don’t be afraid to ask questions and partner with your therapist; it’s a joint-effort.” Mom and author of SPEAKING OF APRAXIA (Woodbine House, 2012)

Jake
Age: 6 years and 8 months old
Grade: Kindergarten
Diagnosed: 3 years old
Speech Therapy: Age 27 months to 5.8 years old
Frequency of Speech Therapy: 1x/week from 27 months to 35 months and 2x/week from 3 years old to 5.8 years old.
Type of Speech Therapy: Kaufman and Speech-EZ hand cues
Additional Diagnoses: Multiple food allergies / eczema and asthma that are in remission
Mama’s Words of Wisdom: If Plan A doesn’t work, relax. There are 25 other letters in the alphabet.

Colten
Age: 6 years and 2 weeks
Grade: Pre-K 4 (second year in a row)
Diagnosed: 3 years old
Speech Therapy: Age 22 months to Present
Frequency of Speech Therapy: 2x/week from 22 months to 36 months and 4x/week from 3 years old to present.
Occupational Therapy: 2x/week since age 3.5
Type of Speech Therapy: Kaufman and Hodson Cycles
Additional Diagnoses:  None
Mama’s Words of Wisdom: Trust your gut. Always trust your gut. I’m so glad I didn’t listen to the SLP who told us to get an augmentative communication device because he would never be a primary vocal communicator. She couldn’t have been more wrong. Mama knows best. Remember that.

Megan
Age: 5 years and 6 months
Grade: Pre-K 4
Diagnosed: 20 months old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 2x/week from 18 months to 3 years old, 5x/week from 3 years old to 5 years old, and 4x/week from 5 years old to present.
Occupational Therapy: 1x/week from 3 years old to 5 years old and 2x/week from 5 years old to present.
Type of Speech Therapy: Kaufman and Sign Language
Additional Diagnoses: Multiple food allergies, eczema, asthma, EOE,  hypotonia
Mama’s Words of Wisdom: You are your child’s best advocate. Educate and know what your child’s rights are and ensure they receive them.

Luke
Age: 6 years and 7 months old
Grade: Kindergarten (typical classroom at public school)
Diagnosed: 2.2 years old by Nancy Kaufman with severe apraxia and residual apraxia by 3.7 years old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 1-2 times a week from 18 months to 24 months old and 3-7 times per week from 2.2 years old to 4.5 years old. Participated in intensive therapies at Kaufman Children’s Center, STAR Center, Foundations Developmental House, and George Washington University CHAMP camp. Currently receives speech therapy privately once per week and 2 group therapies at school.
Occupational Therapy: Has been done throughout the course of this journey 1-2 times per week (sporadically). Currently OT consult only.
Type of Speech Therapy: Kaufman Speech to Language Protocol, Speech-EZ Apraxia, and CASANA Boot Camp Trained SLP
Additional Diagnoses: Dyspraxia, sensory processing disorder, ADHD
Mama’s Words of Wisdom: Talk is cheap, speech is priceless.

Aaron
Age: 5 years and 2 months old
Grade: Pre-K 4
Diagnosed: 2 1/2 years old
Speech Therapy: 2 1/2 old to Present
Frequency of Speech Therapy: 2x/week
Type of Speech Therapy: Prompt and Kaufman (in the beginning)
Other Therapies: OT (in the summer), ABA (just started in March)
Additional Diagnoses: Autism, hypotonia
Mama’s Words of Wisdom: It’s a marathon, not a sprint.

Preston
Age: 4 years and 11 months old
Grade: Preschool (2nd year)
Diagnosed: 2.4 years old by Nancy Kaufman, but as he began to speak, I was not convinced he ever had apraxia.
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: In the beginning, 2x/month. Moved to weekly at around 2.5 years. Twice a week at around 3 years old. 3x/week for the last 6 months.
Other Therapies: Received developmental therapy and OT through EI until 3 years old. Is currently in ABA, social skills, OT, and vision therapy (along with speech).
Type of Speech Therapy: Not really sure!
Additional Diagnoses: Autism spectrum disorder, sensory processing disorder, global developmental delay, and a bunch of other “alphabet soup” type diagnoses.
Mama’s Words of Wisdom: Everything will be alright in the end. If it’s not alright, it’s not the end.

Andon
Age: 4 years and 7 months old
Grade: Pre-K 4
Diagnosed: 3 years old
Speech Therapy: Age 23 months to Present
Frequency of Speech Therapy: 1x/week from 23 months to 36 months and 2-3x/week from 3 years old to present.
Occupational Therapy: 1x/week since age 3.5
Type of Speech Therapy: Some Kaufman style therapy as well as Dave Hammer methods. Currently integrating some Kaufman and Speech-EZ hand cues.
Additional Diagnoses: Food allergies, eczema, severe night terrors, and sensory processing disorder.
Mama’s Words of Wisdom: Keep reading and searching for what works for you and in the mean time just love your little one and do your best!

Cason
Age: 4 years and 9 months old
Grade: Preschool
Diagnosed: 17 months old – oral apraxia and suspected apraxia of speech / 26 months old – firm apraxia of speech diagnosis.
Speech Therapy: Age 17 months to 4.5 years old
Frequency of Speech Therapy: 1x/week private speech therapy from 17
months to 22 months, 2x/week early intervention speech therapy from 17
months to 3 years old, 3x/week private speech therapy from 22 months
old to 4.5 years old.
Occupational Therapy: 1x/week from 17 months to Present
Type of Speech Therapy: Kaufman
Additional Diagnoses: Oral apraxia, sensory processing disorder, hypotonia
Mama’s Words of Wisdom: Faith- It doesn’t make things easy, it makes them possible.

Gia
Age: 3 years and 11 months old
Grade: Preschool
Diagnosed: 3.4 years old
Speech Therapy: Age 36 months to Present
Frequency of Speech Therapy: 2x/week in Priority Preschool, and 2x/week in Private Therapy.
Occupational Therapy: 2x/week in Private Therapy
Type of Speech Therapy: Speech-EZ hand cues
Additional Diagnoses: Sensory processing disorder (suspected), food allergies, and eczema.
Mama’s Words of Wisdom: Sometimes the things we can’t change, end up changing us.

Many thanks to the mothers who helped me out with this project. Your perseverance, love, and work ethic blow me away. Best wishes in your healing journey with apraxia, etc.

Although none of us knew when our baby was born that one day he or she would have apraxia, we all had dreams of what their childhood would be like …hearing mama for the first time, having silly conversations, and singing the ABC song. We were set, ready to go to Italy. But instead we heard our child had apraxia of speech and often many other diagnoses, and off we went to Holland. Despite the fact that the story below was written by a mother of a child with down’s syndrome, much of it hits close to home to me.

Happy Mother’s Day to the special warrior apraxia mamas who live a life that is filled with many extra responsibilities and energy that is fueled by love. Also to the many SLPs who juggle motherhood along with teaching our kiddos how to talk.

Have a great day!

xoxo,

Tori

holland

by Tara, Contributing Writer

As spring finally (hopefully) takes hold for us here in the Midwest, questions have already started popping up to make decisions for next fall. Good grief, can I just enjoy the beautiful flowers beginning to bloom outside?

Not so much.

Our little boy just turned five years old … something I’m still having a hard time comprehending.

The school district where he goes to preschool three days a week (and receives free speech and OT services that he qualifies for) has been asking us if we are sending him to kindergarten. They need an answer.

I immediately said NO! Besides the services through the district, he’s also continuing private speech and OT three times a week. Although he’s made incredible progress the past year, we still have a long journey ahead. The words “he’s ready to graduate from speech” haven’t even remotely been uttered by his speech therapist.

Once I said no to kindergarten, the district really pushed hard for us to change our minds. Their official stance is that research shows waiting a year to send a child doesn’t make any long term difference.

Now, in the interest of full disclosure I have not done any official research myself on the topic. I don’t need to or want to. I’m listening to my “Mommy Gut.”

My “Mommy Gut” says he’s not ready. Period. He has a horrendous neurological speech disorder that he won’t just outgrow. One more year of concentrated speech and occupational therapy will do wonders for him. I want his confidence to be strong. I want him to be able to stand up and say a full sentence with pride and be able to be understood by his classmates and teachers.

Everything I’ve witnessed firsthand about apraxia is that it takes time, patience, hard work, practice, more practice and more hard work. I don’t want to set up my little boy for failure right out of the gate. He needs more time.

I’ve talked to many other moms (some with special needs kids, others without) who said the best decision they ever made was waiting a year before sending their children to kindergarten. I talked with a teacher friend who said, “I’ve never ever heard a parent say they wish they would have sent their child early to kindergarten. I always hear parents say they are so grateful they waited.”

For about a week, the district was really making us feel guilty.
He’s ready.
He’ll have support at school.
He’ll be fine.
The research. The research. The research.

Even my husband started to waffle a little bit …. “Maybe we should send him. He’s already taller than his other classmates. He’ll turn seven years old towards the end of kindergarten when other kids will only be turning six.”

But, I’m sticking firm on this one. In my world, there’s no rush to start him in kindergarten. I was the oldest in my class. I actually used to think that was cool.

Plus, he’s a boy. That is one fact I think most everyone can agree on: Boys are usually slower to mature than girls.

Another day. Another decision. It seems like there’s always something isn’t there? How many times a week for speech? Do I increase his number of sessions this summer when he doesn’t have preschool? What about the speech therapist? Is he or she still ‘clicking’ with our son? Is he getting exactly the help he needs? Any new apraxia treatments out there? Should we be trying anything else?

The wheels keep spinning in my head, but at least I know this specific decision is right for our son. Just one more year before I send my “baby” off to kindergarten. So now, can we please go outside and enjoy the spring flowers at least for a few minutes?!?

Tomorrow we resume business as usual here at the blog. I’ve been writing for the past month as we worked out what our blog future looked like. Tara will take the stage tomorrow.

I wanted to share a few updates …

  • Katie, our contributing SLP, will be dropping down to writing one post per quarter / four times a year. We are also now featuring a “Dear Katie” column. Do you have a question that you wish you could bounce off a professional? Does your own SLP do something that you think may not the best fit for your child? If you have any apraxia therapy related question that you’d like addressed, please let me know either via email or in the comments below.
  • Sam had a healthy baby boy last month and will be joining us later in the summer to fill us in on life with Andon, apraxia, and a newborn. Big hugs to Sam for being the awesome, homeschooling, baby-raising, speech-teaching mama that she is!
  • Amber is staying on board, but will be blogging every other month. So very excited she decided to stay! As she mentioned, her oldest son with apraxia was released from speech and her younger son is still in speech therapy, but no longer has apraxia due to misdiagnosis.
  • Regarding Tara and I, there are no changes. We will blog on a rotational basis and will continue to resist the urge to use country song lyrics in our posts so we’re not violating copyright laws. Every once in a while though, we let one slide. She’s still the rocking mama of two kids with apraxia and I’m about to have a little apraxia boy graduate kindergarten!

In other apraxia news …

  • Thursday, May 14, 2015 is Apraxia Awareness Day. Click here for CASANA suggestions on how to observe this very special day. There are loads of people who still have not heard of apraxia and it’s our job to get the word out. I will have a special post that day, spotlighting some of the kids we have featured in the past, and I will also be sharing my favorite apraxia articles each day on Facebook.
  • May 10 – 16 is Food Allergy Awareness Week. Since my child could be the poster child for food allergies, I will also be sharing my favorite food allergy articles on Facebook that week.
  • Camp selection is probably winding down at this point, but there may still be a few spots left! Click here for more information. CASANA has done an excellent job of breaking the camps down by state.
  • Northern Speech Services Autism Awareness Month Sales End Tomorrow. Click here to check them out.

“I love you mama!” my son Jake shouted with a bright smile as our paths crossed in the hallway one morning a few days after Christmas. He was still in his pajamas, enjoying a laid back holiday schedule, and his blue-green eyes sparkled with pride.

I stopped in my tracks, joy overflowing from my soul.

Had he really just said it for the first time?

The words flowed out like a melody … like he had said them a million times before. There were no mispronunciations and no awkward pause for the right sounds. That love I had waited so long to hear had been spoken pure, clear, and effortless.

We took a moment to celebrate the victory that only he and I knew the monumental value of. I scooped him off the floor, tears in my eyes, and we jumped up and down, arms tightly wrapped around each other and he continued on, this time adding a word into the mix … “I love you too much! I love you too much! I love you too much!”

That was a couple of years ago when Jake was four years and four months old. He had been in speech therapy for two years.

Jake is now six years old and recovering from childhood apraxia of speech, a neurological disorder where a child understands what is being said and knows what to say, but words get scrambled in the brain before they are spoken. Children with apraxia have inconsistent errors; they may be able to accurately say a word once, but that same word may come out differently an hour later or if it is repeated multiple times.

Speech therapy involves practicing sounds and words sometimes thousands of times before progress is made. I had to wait until he was three to hear “mama” and he was virtually silent until he was four. The words that he did attempt to speak were typically not understandable.

At that point in his life, to string five words together and say them repeatedly was huge. A miracle in my book.

Jake had been signing “I love you” since he was two and his brothers had started busting rock alongside the gesture. Every night I would tell him I loved him before he went to sleep, but he would just respond with a silent snuggle or a garbled attempt.

But maybe he was just waiting for the right moment.

The night before Jake said “I love you” for the first time, I wrote a blog post – Angels Among Us – about our friend’s daughter … the inspirational, ultra-special, and very talented Lily Anderson. A girl who was known for lighting up life with her love. A girl who was eleven years old and had recently lost her battle with cancer.

The caption on her Facebook page read, “”Her Light Shines” – An amazing aerial shot as sweet Lily was driven to her final resting place. Thousands of her friends and people of the community lined the streets with candles lit, honoring her life.” The fire department even pitched in and extended a glowing ladder into the sky.

The caption on her Facebook page read, “Her Light Shines” – An amazing aerial shot as sweet Lily was driven to her final resting place. Thousands of her friends and people of the community lined the streets with candles lit, honoring her life. The fire department even pitched in and extended a glowing ladder into the sky.

These are the words I used to describe Lily on December 27, 2012 …

She had the most beautiful smile you’ve ever seen. Beauty and grace radiated from her spirit. While her courage and strength astounded me, her natural God-given talent to bring people together and inspire them was remarkable. Each time over the years when I would hear this little girl sing or see her smile beaming from a photograph, I couldn’t help but feel something deep in my heart.

lily

She made people care. She made others want to do something phenomenal. She made life look easier; she made struggles seem shallower. Her fighting, loving spirit made people want to work harder, be kinder, and go out of their way to do something nice.

In my post, I quoted 1 Corinthians 13:13, as I felt it was the perfect representation of sweet Lily …

Faith. Hope. Love. The greatest of these is love.

I closed with … The only way I can begin to comprehend this girl’s tragic sickness, is to think her presence here on Earth was for some greater good. Sometimes God chooses ordinary people to do extraordinary things. Lily was that girl.

How can I even begin to explain the perfect, out-of-the blue timing of Jake’s “I love you” the next morning? After thousands of attempts to speak the three words that a mother longs to hear, my heart overflows with gratitude for the special way they were delivered. Some may call our story a coincidence, but I know it was more. A lot more.

Although Lily passed on December 15, 2012, I know she is still out there breathing love into life.

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This post is very close to my heart and will forever be one of the most special and spiritual moments of my life. I am beyond honored to be able to share Jake and Lily’s story on the same page.

Over Easter weekend, I read the newly released book “Glitter,” by Lily’s mom, Jennifer Anderson. After learning more about this special little girl, I knew I had to reach out to Jennifer and share our story. I didn’t want to publish this post without her blessing.

glitter 2

Despite the heartbreaking subject matter of cancer, this is an uplifting story about a girl who chose to live an optimistic “YES” life even through difficult circumstances. It’s about a family who fought and did not give up, relying on “Anderson Power” and “whispers”from God to strengthen their faith. After reading this book, I know without a shadow of a doubt that Lily’s purpose was to spread faith, hope, and love to everyone she encountered. Thank you Jennifer for sharing her story.

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  • To learn more about “Glitter,” please click here.
  • To listen to some of Lily’s singing performances, click hereIncluded in this collection, is her singing the national anthem before a Braves game at Turner Field when she was ten years old. According to Yahoo Sports, Braves reliever Peter Moylan described it as “the longest standing ovation I’ve witnessed.”
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