The Lady with the Lamp

I have been haunted ever since I read the story that Lisa Goes wrote for “Age of Autism” about Alex Spourdalakis. (If you did not hear about this story, please click here to read.) Many times I’ve tried to erase the image of the naked, fourteen-year-old, non-verbal boy with all four limbs shackled in a Chicago hospital and red splotches all over his body.

But, I can’t.

The story of this courageous mother and the battle that she and her autistic son faced for 34 days in a United States healthcare facility makes my heart hurt and leaves a sick feeling in my stomach. It also makes me long for the day that conventional medicine and biomedical converge and start collaborating together. I pray for a day when it is no longer us versus them. And when that day comes, great things will happen.

I think the great English nurse Florence Nightingale would agree with this sentiment because one of her greatest quotes is:

nightingale quote

Earlier this month, marked the birthday of this heroine who is known for the strides she made in healthcare reform. Nightingale knew at an early age that nursing was her calling and rejected the Victorian Era notion that ladies should marry a well-to-do man and settle into a life of complacency.

She was smart and strong-willed and changed the way society viewed nurses. What I love about her story is that she essentially did it single-handedly. She didn’t adhere to traditional beliefs, she worked hard to educate herself, and she built a stellar reputation. Because of this, in 1854 when 18,000 wounded soldiers were admitted into military hospitals devoid of nurses during the Crimean War, she was called in to the rescue.

She gathered a team of 34 nurses and days later, they were on a ship to Crimea. She arrived to horrific sanitary conditions and men who were dying more from infectious diseases than from the injuries that had put them in the hospital to begin with.

What did she do?

For one, she made a name for herself … “The Lady with the Lamp.” Nightingale earned this title because she spent every waking moment tending to the soldiers and would work into the wee hours of the night, walking down the dark hallways, lamp in hand to light her way.

Nightingale’s stats during this time were impressive. She reduced the death toll by two-thirds simply because she improved the hospital’s sanitary conditions and she created several patient services that improved the quality of their stay. My favorite reform she created was the “invalid’s kitchen” where chefs cooked up unique meals for those patients who had special dietary needs.

How would this pioneer in healthcare have felt about Alex?

 Let each person tell the truth from his own experience.

- Florence Nightingale 

 In the article that Lisa Goes wrote for “Age of Autism” she stated, “Alex’s mom explained he has many allergies. Both physicians at Gottlieb and Loyola told her that IgG and IgE food sensitivities were invalid. Dorothy was told by the attending physician to give her son milk at Loyola, not in the ER. When a possible reaction occurred she was told the bed caused his contact dermatitis.”

When I read this statement, I dove deeper into panic mode. After all, my son has multiple food allergies and intolerances, and his skin has been breaking out in hives and eczema since he was three months old. Off and on for 45 months I listened to my prior pediatrician and put steroid cream on skin that looked like this …

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Obviously, the steroid cream didn’t work. Once I made diet changes and added supplements to his daily routine, his skin problems disappeared. The possibility of my son’s skin looking like Alex’s if treated as a regular patient in a hospital is very plausible.

And as naive as it may sound, I had never really thought about that before, despite the fact that I have vowed never to return to a mainstream doctor’s office again.

What if a hospital refused to believe me? What if they regarded his food sensitivities and his diet requirements as junk science? What if they ignored my claims that he has a sensitive system and that many medications could be detrimental to him? What if my son couldn’t say, “Please stop! You are hurting me!”

I spent the first hour after reading Alex’s story shaken. What would my family do if we were ever in that predicament? But, then suddenly it hit me … I don’t think my son’s MD would allow that to happen.

Tasneem Bhatia is a physician who is additionally certified in holistic medicine, nutrition, and acupuncture. She is the Contributing Editor for Prevention Magazine and the author of the new book “What Doctors Eat.” She makes regular appearances on all the top television shows and trained under Dr. Andrew Weil. The bottom line is this … She is talking and people are listening.

I may be wrong, but I think that all this phenomenal physician would have to do is march into my son’s hospital room and tell them who she is and her credentials and I am hopeful that the hospital would cooperate.

The problem across the board, however, is that medical professionals like Dr. Bhatia are few and far between. While I am a fan of naturopaths, homeopaths, acupuncturists, and all the other holistic doctors, from my experience, they are not taken seriously in the traditional medical community. There needs to be more MDs and nurses with specialized certifications and more professionals who understand the challenges that these patients face and therefore, know how to treat them.

While I am not discounting the value of the many talented doctors and nurses who save lives every day, there appears to be a gap in the system … and it needs to be filled ASAP.

This week many high school and college seniors are facing their futures. As my pastor said at my church while the graduates in our community stood behind him …

The seniors on that stage have the potential to change the planet.

I’m not one to yell “Amen!” in my Southern Baptist church, but that day I came really close to it because tears clouded my eyes as I thought about the many nurses, doctors, and specialists that have the potential to emerge from that group.

Dr. Julie A. Buckley author of “Healing Our Autistic Children” states in her book , “There is nearly a three-year waiting list for a child with autism to come see me. There are quite a few experienced specialists in my field now, and they all have the work schedules and waiting lists like mine.”

If you know of someone whose calling is to go into the medical profession, I am asking that you forward this article to them. The stats on autism, apraxia, ADHD, dyslexia, food allergies, and food intolerances are rising at an alarming rate. Simultaneously, more parents are seeking biomedical treatment because mainstream doctors do not have the answers. As far as I am concerned, we have an epidemic on our hands and the demand of special needs children far exceeds the supply of doctors to treat them.

Sources:

  • bio.True Story. Florence Nightingale. http://www.biography.com/
  • Age of Autism. “Day 19: Chicago Hospital Locks Down Autistic Patient,” by Lisa Goes
  • Atlanta Center for Holistic & Integrative Medicine. www.atlantaholisticmedicine.com
  • Florence Nightingale – Top 10 Quotes – by iPerceptive on You Tube
Categories: Diet & Supplements, Food allergies | Tags: , , , , , , , | 1 Comment

What Apraxia Means To Me …

Last week we concluded our regular six month testing and Jake may be moving out of an apraxia diagnosis and into something less severe. The tests proved my own assessment of his speech – his errors are now consistent and age-appropriate. Yay! His progress in six months time has blown me away. While we are still not out of the woods yet, each and every day Jake’s four-year-old body continues to heal. God bless this child who has ignited my spirit and brought so much passion to my life. I am grateful that today, on the first Apraxia Awareness Day, I can share our journey with this speech disorder and all of the many things it has meant to me over the past two years …

apraxia awareness

Denial. The beginning. My child needs speech therapy? Um, no. Speech issues don’t run in my family; I’m sure he’s just a late talker. When I first called Early Intervention, I only did so because I felt it was required of me as a mother, not because I genuinely felt there was anything wrong.

Neurological Speech Disorder. Jake was diagnosed with Childhood Apraxia of Speech the week of his third birthday. I had never heard of apraxia before. The definition that made the most sense to me early on was one Leslie Lindsay wrote in the book “Speaking of Apraxia” … The problem with CAS occurs when the brain tries to tell the muscles what to do and the message gets scrambled somehow. The child typically knows what she wants to say, but her brain is not sending the correct instructions to move the mouth the way that it should move.

Fear. Will my child ever speak? How will he ever have a complete vocabulary when he can only say five words now and he has to work so hard for one tiny sound? Will he have friends? Will he be able to go to a normal school? Will he have other learning disabilities?

Jealousy. Hearing other children talk when your child is nonverbal will break your heart in two.

Apraxia, etc. For me personally, apraxia has also meant ear infections, eczema, asthma, food allergies, and food sensitivities.

Education. Being a journalism graduate, I love to read and write and have spent hundreds of hours researching apraxia, sensory processing disorder, autism, fine motor skills, vestibular system problems, and biomedical treatment. Once I educated myself, I no longer felt so helpless and was able to start enforcing treatment plans geared specifically to CAS.

Kaufman Cards. From age three to four, we worked on Nancy Kaufman’s first set of cards. I knew the words backwards, forwards, and inside out. SLP #3 from our rural public school with limited resources, used her $200 therapy allowance (the first she had gotten in several years) to buy Kaufman Cards for Jake. The private SLP who followed her also continued on with the Kaufman cards and I even made my own set to use at home.

Prayer and Faith. When I read the book “Calm my Anxious Heart,” by Linda Dillow, my attitude towards apraxia changed. I accepted that God has a bigger plan for my life than I have for my own. I stopped feeling like a victim and started focusing on the positives. I realized that in life, we all have struggles, and apraxia just happens to be mine. I started praying – real heartfelt prayers – for God to lead me in this journey and to heal my baby.

Blogging. In December of 2011, I created a blog to document our journey with apraxia. The people I have connected with online have truly been a blessing and have inspired me to keep moving forward.

Tears. In the beginning, many sad tears were shed out of confusion, fear of the future, and a situation that was 100 percent out of my control. I have cried more happy tears this year, however, than I have in my entire life.

Passion. The kind that whisks you off of your feet, forget all reason, and love intensely.

Patience. Patience. And more patience.

Repetition & Building Brain Pathways. Drilling sounds, words, sentences, and songs over and over again builds communication pathways in the brain and makes them stronger. Repetition is a technique that has remained constant in our treatment plan.

Lynn Carahaly’s  Speech-EZ Hand Cues & Katie. When Jake first did hand cues, I was amazed at how much easier to words flowed out of his mouth. Having cues for different sounds has made a huge difference in Jake’s progress. Our current SLP, Katie, is a master with hand cues and her chemistry with Jake has been a huge contributor to his progress over the past 6 months. Love both these girls!

Hard work and Determination. I have worked my butt off teaching Jake how to speak and making sure he receives the type of therapy that will benefit him the most. He in turn, has been the most amazing, inspiring student. He works hard and although he can certainly become frustrated from time to time, he never gives up. I hope he never loses this personality trait that apraxia has forced upon him.

Biomedical. After getting many tests done, Jake started on a diet and supplement program in September of 2012. Going this route has dramatically changed our relationship with apraxia because it has made the words come so much easier. I feel like biomedical has been a terrific supplement to speech therapy.

Follow Your Gut & Listen To Your Heart. Enough said.

Joy. This is a big one. It is so big that I think it might just surpass all of the negative emotions listed above. Nothing makes me happier than hearing Jake say a new word or sentence. Every single word has brought me joy from deep inside my soul. I wish and pray that every mother who has a child with CAS gets to one day experience this emotion. It is the best feeling feeling ever.

Most Popular Jake’s Journey blog posts:

DIY Kaufman Cards

Kaufman Summer SPEAK program by Guest Writer Jenny Sanzo – Part 1 and Part 2

The Magic of Hand Cues

The Gut Brain Connection

Categories: Apraxia-Help!, Our story | Tags: , , , | 9 Comments

Happy Mother’s Day

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The child asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?” “Your angel will be waiting for you and will take care of you.”

The child further inquired, “But tell me, here in heaven I don’t have to do anything but sing and smile to be happy.” God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”  

Again the child asked, “And how am I going to be able to understand when people talk to me if I don’t know the language?” God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach  you how to speak.”

“And what am I going to do when I want to talk to you?” God said, “Your angel will place your hands together and will teach you how to pray.”

“Who will protect me?” God said, “Your angel will defend you even if it means risking it’s life.” 

“But I will always be sad because I will not see you anymore.”  God said, “Your angel will always talk to you about me and will teach you the way to come back to me, even though I will always be next to you.”  

At that moment there was much peace in heaven, but voices from Earth could be heard and the child hurriedly asked, “God, if I am to leave now, please tell me my angel’s name.” You will simply call her “Mom.” 

- Author Unknown

I have read this story many times and never tire of it. Happy Mother’s Day to all the special mamas out there!

Categories: Apraxia-Help! | 1 Comment

Guest Writing At SpeakinMotion Today

Today I am guest blogging over at SpeakinMotion, the creator of the awesome VAST apps. Don’t forget, they are giving away two iPad minis this month and you have until May 15th to register. They are also doing a lot of other giveaways, so be sure to sign up to follow them on Facebook to stay in the loop of these great deals. My post today is on repetition, which has been vital to beating apraxia from Day 1. I share our evolution of repetitive practice from the nonverbal days to today and here’s how it begins …

“You know, I told you back in the spring that I suspected apraxia with Jake. Well, now that he’s almost three and I’ve been working with him for a few months, I am now comfortable in ‘officially’ diagnosing him with this speech disorder.”

It was the week of Jake’s third birthday and the words that our SLP spoke confirmed what I already knew to be true because I had spent the past few months researching apraxia and watching videos of children with apraxia speak. According to ASHA …

Childhood apraxia of speech (CAS) is 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.

In those early days, I also feared autism. After all, about half of the children with autism also have apraxia and ASD is more common among boys than girls. While apraxia scared me, I feared going up against autism even more. Fortunately, apraxia was the only diagnosis we received and each and every day, I have been 100 percent focused on beating it.

Click here to Continue

Categories: Apraxia-Help!, Apraxia-What can I do at home?, Having trouble mastering a sound?, iPad apps & computer games | Tags: , , , , , | 2 Comments

The Thinking Moms’ Revolution Book Review & Giveaway

Passion. Raw. Knowledge. Fierce Love. Powerful. Selflessness. Unstoppable. Determined. Confident. Movers and Shakers.

These are just a few words that come to mind when I think about The Thinking Moms, the words they write, their Revolution, and their new book that was just released this month.

TMR-Book

I read a lot of books and what I love about “The Thinking Moms’ Revolution Autism beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children” is that their words pull me in. The truth they speak can bring tears to my eyes in an instant and ignite my soul. They give me courage to go on and they make me more determined than ever to beat apraxia.

Why? What makes this group of moms and one dad so inspirational?

Because their stories are strikingly similar to mine, only they have faced and persevered through more challenges. Their words are my heart and soul … everything I believe to be true now and everything that I have felt and experienced in the past.

Just to clarify, my son does not have autism, but after reading this book, I had confirmation of what I have felt all along … This could easily have been me. This could have been my baby. I feel this way because many of the symptoms that Jake has experienced with apraxia overlap into the world of autism.

If you’ve never heard of The Thinking Moms and their book, here’s what their blog has to say …

Twenty-three moms and one brave dad make up The Thinking Moms’ Revolution. Their group stretches from Montana to Malaysia to Montreal. While parenting children with disabilities, they came together on Facebook to collaborate about bio-medical and dietary interventions, as well as doctors and researchers developing cutting edge treatments. In the process they became a tight-knit family dedicated to helping their children lose their diagnoses. Out of this collaboration they have created something far more substantial. Suspecting that the roots of their children’s autism, adhd, asthma, sensory processing disorder and food allergies may be found in the overuse of antibiotics, preventative medical care, environmental toxins and processed food, they began a mission to turn it around!

I think one of the many strengths of this book is that each chapter is about a different family. Each parent tells their child’s story and everything that has come with it – past, present, and hope for the future. There are 24 of these stories and if you integrate all of their on-the-job experience, you’ve got a book chalked full of just about every kind of therapy, emotion, and situation imaginable. They have all traveled similar journeys fueled by intense love, but their paths have been different … this is what makes this book so good.

I also love their nicknames for each other – Blaze, DragonSlayer, LuvBug, Poppy, Booty Kicker, The Rev, Goddess, Twonk, Sunshine, Prima, Tex, Savage, Cupcake, Mamacita, Saint, The Count, Mama Mac, Sugah, Princess, Money, Snap, Mountain Mama, Professor, and MamaBear.

One of my favorite chapters was “The Professor’s Fractured Fairy Tale” because it was a story on apraxia. I have this book on my Kindle and while I highlighted loads of potential therapy solutions and witty sentences as I went along, when I got to this chapter I sped through it, not marking anything. I soaked in each word, almost holding my breath throughout it, because I was so taken in by this story.

The Professor’s son, Bryce, has a story similar to Jake’s … allergies, apraxia, ear infections, asthma, antibiotics, and abnormal stools. These two boys qualified for early intervention at the same age – 27 months – and we both have seen a huge response to bio-medical intervention coupled with speech therapy.

She articulated what I feel to be true in my own heart, as I too, have spent a lot of time reading books on autism and visiting these online communities. The Professor writes,

Sometimes I wonder about how I came to be so deeply involved with autism parents, given that I don’t have any children “on the spectrum.” Personally, I have come to believe that “the spectrum” is really much broader than we think it is. Yes, maybe my children are not classified with autism (and I hope they never will be!), but both have (or had) neurological impairments that are helped by similar treatments and, in all likelihood, caused by similar processes. In fact, I now believe that most, if not all, of the modern chronic illnesses so prevalent today have similar roots. As autism numbers have risen, so have those for diabetes, asthma, ADHD, arthritis, life-threatening allergies, obesity, and a number of other autoimmune illnesses. Children with autism really are the “canaries” that are letting us know that so much of our lives has become poisonous to humans, particularly developing humans.

And that is why I share this book with you today. All of the disorders that our children are faced with today, and the fact that those numbers are rising, scares me to death and breaks my heart.

In support of Autism Awareness Month and a group of parents (and writers) who I think very highly of, I am purchasing this book myself and gifting it to one of you. To register for the giveaway, leave a comment below and share what illnesses and/or disorders your child has faced in addition to apraxia. If your child is 100 percent healthy, I want to hear from you too! A winner will randomly be selected.

To learn more about The Thinking Mom’s Revolution visit www.thinkingmomsrevolution.com. To purchase this book click here.

* This giveaway is open to those over 18 and residents of the United States and Canada. Contest begins on Thursday, 4/25/13 and ends on Sunday, 4/28/13 at midnight. The winner will be announced on Thursday, 5/2/13.

Categories: Apraxia-Help!, Diet & Supplements, Food allergies | Tags: , , , , , | 18 Comments

A Special Spring Break & Other Apraxia News

Last week I took a blogging vaca because my family and I went to the beach for the Spring Break holiday … thus the new header photo on my home page. I sank into lazy mode pretty quick and spent my week reading, sunning, and playing in the sand. (I love playing in the sand more than my boys do. Unfortunately, their love is tearing down sand creations that I build.)

Jake isn’t a natural lover of the sand and because I’ve got so many facts that cloud my mind, part of me wonders if it’s a sensory issue. Or, maybe it’s as simple as my child doesn’t like the way sand feels and also knows he’s deathly allergic to everything out there in that great big sea.

On that first day at the beach when Jake was begging to go back to the pool, I told my husband that all Jake needed was a friend to show him the ropes. His older brothers were busy playing big boy games like frisbee, football, baseball, and swimming in the freezing cold ocean. While Jake does like to play with his brothers, they don’t necessarily reciprocate  his enthusiasm. I’m sure you can see where the problem arises.

God heard my prayers because Day #2, sweet little Gabe showed up … a second grader with a heart of gold who had the best sand bucket in the world. After Jake spent about an hour harmoniously playing with him, I complimented his mother on how good her son was with mine. Here’s what made Gabe such a special, compassionate, and patient friend for my baby …

  • His dad had a stuttering problem all through school, but finally beat it.
  • Now his four-year-old sister has a stuttering problem.
  • The babysitter that was traveling with them was a special education teacher in an inclusion classroom.

A special family and a special friend.

Jake would spend the rest of the week anxiously awaiting Gabe’s arrival at the beach so that they could spend hours building volcanos in the sand and his family even invited Jake over one afternoon to have a water balloon fight outside their condo. This story makes my heart smile. It also remedied the hurt I had felt from some girl bullies Jake stumbled across at the Chick-fil-A playground the week before we left for the beach.

I had to rescue my Little Man as tears poured out of his eyes and he screamed repeatedly, “Yes! My is four! My no baby!” The lead bully was in turn relentlessly arguing back, “No! You’re not four! You’re only two! You talk and look like a baby!” Even when I told the Mean Girl that he was in fact four, she still calmly and confidently looked at me, hands on hips, and told me I was wrong. To my face, people! You know you’ve got a bad bully on your hands when they also bully the parent.

I left the restaurant shaken that day and unsure of how to handle situations like these. Our children are different and friendships do not always come easy. They are quiet, afraid, and not confident with their voices. Unfortunately, the world is not full of angels like Gabe.

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I have found myself repeating these words a lot this week as our nation is surrounded by tragedy. In honor of this verse, here are a few really great things happening in our special needs community right now …

CASANA’s 2013 National Conference on Childhood Apraxia of Speech is in Denver July 11-13. This year CASANA is offering partial/full scholarships for parents to attend this exceptional gathering of experts on CAS. The deadline for submitting your scholarship application is May 1st. Click here for more information.

In support of Autism Awareness month, SpeakinMotion, the creator of the awesome VAST apps, is giving away two iPad minis! Click here to enter the giveaway, which runs from April 15-May 15. New around here and never heard of VAST? Click here to read my past review on these apps.

Last week I started reading “The Thinking Moms’ Revolution: Autism Beyond the Spectrum – Inspiring True Stories from Parents Fighting to Rescue their Children.” I love this blog, I love this book, and I love these parents. I think the TMR book is so inspirational, thought-provoking, and slam-packed with useful information that next week I am personally donating a copy of this book to a giveaway winner.

Be sure to tune in on April 25th for more information on this powerful book. I’m almost done with it and I can’t wait to tell you all about it.

Categories: Apraxia-Help!, CASANA, iPad apps & computer games, Jake's Journal | Tags: , , , , , , , , | 4 Comments

Finding Joy in the Journey

When I first entered the blogosphere, I ran across a special apraxia mama who told me …

Our boys are the same age – born in the same month – and their siblings are even the same age. We are both married and live in the same state. I wasn’t quite sure what she meant at the time. Weren’t we going through the same things? Joy? What joy could possibly be hidden amongst all of the trials I was facing with Jake?

My journey continued and those words kept running through my head. And slowly, but surely, I started to get it. I share it with you now because it has been some of the best advice I’ve ever received.

As ironic as it may sound, many days I find myself thanking God for apraxia and everything else that has come with it. Little things, like each and every word or sound that Jake has spoken, or enjoying a nice meal (fish!) are huge. Little things that I never thought twice about before, now bring deep gratitude and joy.

What exactly is gratitude? I like this definition from Psychologyandsociety.com

Gratitude is simply the feeling of thankfulness and the expression of appreciation. It is both a feeling and behavior.

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Here’s my joy from the Easter holiday …

Jake is 4.7 years old and has never had a chocolate bunny in his Easter basket because of his nut allergy and dairy intolerance. My baby, however, loves this sweet treat and savors the moments when he gets to indulge in the only store-bought chocolate he can have – tiny chocolate chips from Enjoy Life. Because Jake has such a love for chocolate, I was on a mission this year to give him his first chocolate bunny.

Surprisingly enough, it was easier than I thought and after a Google search, I found the perfect Easter treats.

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Can you even believe it? Premium Chocolatiers allergy-friendly bunny of the year is named Jake! What are the chances of that? Happy tears flowed out of my eyes as I snatched up “Jake” and some chocolate eggs in my online shopping cart. I literally wanted to jump up and down with excitement because of this blessing!

After I ordered the bunny and had it safely hid away in the top of my closet, I asked Jake, “Do you think you’ll get a chocolate bunny in your Easter basket this year?” A sad look swept over his face and he quickly looked down at his lap, replying in a tiny voice, “No.” My heart melted for him. “Well, maybe the Easter Bunny knows that you have food allergies and this year he’ll bring you a special chocolate bunny.” A hopeful smile crept up slowly as he digested my words. “Maybe,” he said.

Blessings = Simple Conversations

I have never seen a boy so excited to dive into his basket on Easter morning! Wow. I love the extreme gratitude that has been naturally instilled in him because he has always had to do without. I hope that if he outgrows his allergies, his appreciation for the little things in life remain.

What do siblings take away from having a sister or brother with special needs?

Before Jake’s 9-year-old brother inspected his own Easter basket, he was empathetic enough to go through Jake’s basket to make sure everything in there was “safe.” The chocolate bunny was marked with an allergy-safe label, but the eggs were not and it concerned L.

“Mama, I just don’t know if Jake should eat these,” he said. After I explained that I felt it was safe because the Easter Bunny wouldn’t bring Jake anything that would hurt his brother, his mood lightened and he said, “Wow, the Easter Bunny really hooked Jake up this year!”

Lessons like these and the character that is built as a result, can only be learned from exposure. This is not something a parent can teach; it is something that is gained from on-the-job experience.

The relationship that my two boys have reminds me of what Nicholas Sparks shared about his own two sons, Ryan and Miles, in the book “Three Weeks with My Brother.” (Ryan had Central Auditory Processing Disorder as a child and Miles is neutrotypical).

“I tell Ryan that God gave him a brother like Miles so that Ryan could learn that anything is possible and that he can be good at anything. And I tell Miles that God gave him Ryan so that Miles could learn patience and persistence and how to overcome challenges.”

I love these words of wisdom from one of my favorite authors.

To wrap up, I leave you with a photo of the gorgeous eggs that my boys colored last Saturday night. We have not dyed eggs since Jake was born because of his egg allergy. The simple fizz of the color tablet in the vinegar, the flimsy metal egg holder that you use to take the eggs out of the dye, and all of the other aspects that go along with creating Easter eggs, made my boys beyond excited. This event was a long time coming.

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I’d love to hear from you. What joy have you found in your own journey?

Categories: Food allergies, Jake's Journal | Tags: , , , , , , | 1 Comment

Keep Calm & Read A Book

 

In February, April was a guest writer on my site and now she is joining us again to share some book recommendations. If you happened to miss her original post, this is how it started … 

I have spent the last 3 years trying to understand why my daughter, Alessandra, has speech and language delays. Click here to read more …

Throughout this time I read numerous books on the topic of speech development. One of which was Late Talking Children by Thomas Sowell (1997). This is an older book and did not provide any helpful speech tools but it was an amazing book of hope for me. It discusses how a lot of late talking children tend to have strong analytical abilities in the areas of math and computers. The author speculates that some bright children are late in talking because the demands of their analytical abilities, localized in the left half of the brain, are being met at the expense of the speech function.

late 2

I saw this in my daughter at a very early age. By age two she was finishing levels on the Mario Brothers video game (she has older brothers), yet when I gave her a doll at age 5 to play with, she started to cry and stated, “I don’t know what to do with it!” (Not those exact words, but the message she was giving me). Creative play is still not her thing, but I do see a future engineer in her.

Another book I found at the library was called It Takes Two to Talk by Jan Pepper (2004). I thought this was one of the best books for giving practical tools for promoting speech. When my daughter’s school offered an 8 week program for parents based on this book, I jumped at the opportunity to attend. We spend the most time with our children, which means we have the most opportunity for teaching moments. I incorporated a lot of these tools into our daily lives and after while I didn’t even notice I was doing them.

It Takes Two

I’m sure people wonder why I repeat every statement Alessandra makes like a parrot. I also make a point of just working on one speech issue at a time. There is no rhyme or reason to what I choose to work on. I just randomly choose something that I notice keeps coming up and that I think Alessandra is ready to learn. For example, this week we have been working on “Can I have x please?” instead of “I want x.”

what's eating 2

My daughter is rarely ever sick. Seriously! She doesn’t suffer from any allergies either, but she does have a limited diet. Extremely limited diet. When we introduced baby food at 6 months of age, she inspected it and pushed it away. We laughed. Well, we’re not laughing anymore. She is still eating the same finger foods that she started to eat as a baby. I first brought it up with her pediatrician when she was two. He looked at her height and weight and said I had nothing to worry about and dismissed my concerns.

One day I came across a book called What’s Eating Your Child? by Kelly Dorfman (2011). I LOVED this book. I think every parent should read this regardless of whether their child has any health problems. This is the first time I thought maybe the food (or lack of) was connected to Alessandra’s speech issues. I find this issue frustrating because so many people (doctors, even speech pathologists) don’t consider that there might be a connection.

Kelly Dorfman specializes in finding nutritional solutions to common childhood ailments such as anxiety, recurrent ear infections, stomach aches, picky eating, rashes, ADHD, etc. The main idea throughout What’s Eating Your Child? is that either something in the diet is bothering the child or something is missing in the diet. She uses case studies to explain how things work and does a great job explaining the science behind it so everyone can understand it.

The chapter that caught my attention was “The Child Who Couldn’t Speak In Sentences.” In this chapter about speech delays, the author discusses her Best Dyspraxia Program Ever. You can find a condensed version here: http://devdelay.org/newsletter/articles/pdf/372-the-best-dyspraxia-program-ever.pdf. The program includes fish oil (omega-3), vitamin E and phosphatidylcholine.

* Disclaimer: Dorfman’s dyspraxia program sites high doses of vitamin E . For comparison sake, the “average” child gets 20 IUs of E in two Flintstone gummy vitamins. A child should be under a doctor’s supervision before adding any type of supplement.

Since April made these recommendations to me back in December, I picked up What’s Eating Your Child? and just recently finished it. I too, think it is excellent. April has gone back and re-read this book a couple of times, and I’m sure I will too. Thank you April for taking the time to share these books with us. Late Talking Children and It Takes Two to Talk are definitely on my 2013 reading list! 

Congratulations to Juanita (iPad) and Kim (iPhone) for winning the SpeechBox app!

Categories: Apraxia-Help!, Diet & Supplements | Tags: , , , , , | 7 Comments

SpeechBox App Review & Giveaway

When the developer of SpeechBox contacted me a couple of weeks ago and asked if Jake and I would like to try out his new app, I was happy to oblige. After all, I am always looking for new and exciting ways to practice words; all this repetition can start wearing on you after a while. Also, I’m a big believer that when it comes to apraxia, you can never have too many activities for your little one to do.

Let me start off by saying that drilling words now versus one year ago are day and night. When Jake was 3 years old quite often he would stand on his head on the couch (or jump on it) as I coaxed each little word out of him. His energy level was off the charts and speech drills needed to be quick, easy, and stimulating.

Today, Jake is 4.6 years old and has been in speech therapy for 2.4 years. I’m happy to report that he really enjoys doing his speech work now. He is cooperative and his focus is excellent. No more ants in his pants! These days, because of his hard work, he is mainly working on sentences.

One thing I really like about SpeechBox is its versatility. It is beneficial for a child just starting out with their first words (including those with high energy) and also the child who is a little more advanced like Jake is now.

SpeechBox has 700 words on it and because of the great pictures, the single words can easily be elaborated into full sentences. For example, here’s a video of Jake demonstrating how we like to use SpeechBox …

Please keep in mind that if I did not have a video camera in my hand, I would have used Lynn Carahaly’s hand cues to correct his mistakes. Then, he would have repeated each sentence a couple of times to build the speech and motor pathways in his brain.

What does Jake like about this app?

  • Visually being able to see the words/photos scattered around on the iPad screen so that he knows up-front how many words he’s about to say. Just like my other two boys who are always flipping to the end of a chapter book every couple of minutes to see how many more pages they have left, Jake is the same way with words.
  • Control! He likes being able to choose which word he says next, which makes him feel independent. He likes to feel like a big boy and his confidence reflects that.
  • Pictures and audio are great.

What do I like about SpeechBox?

  • Sounds are in alphabetical order.
  • Each sound can be practiced in initial, medial, & final positions.
  • Word is visually displayed while audio is played. Kids with apraxia need as much exposure to reading as possible!
  • Part of Jake’s speech therapy is looking at a picture and coming up with a sentence for it. Now, I can easily work on this skill at home and have hundreds of pictures to choose from.
  • Extra categories are great – body, clothing, colors, farm animals, foods, letters, machines, numbers, and zoo animals.
  • A parent to an apraxic child envisioned this app and made it a reality with the help of SLPs.

speechbox

One of my favorite features on SpeechBox are the customizable pictures with 10 seconds of recordable audio. Also, it’s great that I can type in the words that I say. Visually seeing how words are broken up in a sentence helps Jake considerably with his speech. Here are a few examples that I’ve already uploaded:

  • Picture – Jake at the kitchen pantry. / Sentence -  “I have food allergies.”
  • Picture – Peanuts, almonds, and fish (Jake’s severe food allergies) cut & pasted from Google. / Words – “Peanuts, almonds, and fish.”
  • Picture – Jake at his last birthday. / Sentence – “My birthday is _____.”

I am excited to work on sentences that need to be mastered and I’m so glad Jake and I were given the opportunity to demo SpeechBox. It will be a great tool for us this year.

I’d love for you to try out this app as well! SpeechBox will be giving away two versions of this app – one for the iPad and one for iPhone. Just leave a comment below introducing yourself and telling which device (or both) that you have. I will randomly select a winner one week from today (3/28/13). Best of luck!

For more information about SpeechBox, please visit http://www.speechboxapp.com. To contact Henry, you may email him at henry [at] speechboxapp.com.

Disclaimer: SpeechBox provided me with a free copy of this app to review. I was under no obligation to write a positive review or sponsor a giveaway.

Categories: iPad apps & computer games | Tags: , , , , , | 55 Comments

Food Allergies Kill

On Friday, the following article was on Yahoo … “Allergic Teen Dies After Eating Cookie.”

This article evokes three emotions in me. On one hand, my heart bleeds for this poor mother who kept her son alive for nineteen years. A mother who thought her child was finally old enough to stay safe after living a lifetime of walking the straight and narrow with food.

On the other hand, I feel fear for what the future holds for my own child. Will he ever go into anaphylactic shock? Will he ever be given CPR for two straight hours, as this boy was, in an effort to save his life?

But, the emotion that overrides all reason is anger. I am angry that this boy didn’t understand the severity of his allergy. And, I am angry that the food bully who assured the boy the cookie was safe, wasn’t educated enough to know the consequences.

Food-Allergies-Can-Kill

One type of food bully will threaten a child with the food that they are allergic to. For example, “You better watch out or I’ll shove a peanut in your mouth.” Thank goodness we have not run into this type of person yet.

A second type of food bully, which we have ran across, will encourage an allergic child to eat food that isn’t safe. For example …

  • Jake: Points to food that another child is eating. “Dat make me sick.”
  • Food Bully: “This won’t make you sick. Here – try some.”
  • Jake:  “No. Dat make me sick.”
  • Food Bully: “Ugh. It won’t make you sick!” Usually a good, heartfelt eye roll takes place here. “Just eat it.”

What is interesting about the above scenario is that food bullies are selfish. If Jake would have asked to try the food up front, the child probably would have said no. However, once a food bully finds out a child can’t have their snack and doesn’t even want it, suddenly it becomes a bit of a challenge to control the situation and get their way.

This behavior is perhaps to be expected amongst three to four-year olds, but at what age does it become unacceptable?

Just like the evil Wicked Witch of the West in The Wizard of Oz coaxing Dorothy with her skinny, green finger outstretched, “Come here my little pretty.” Or the serpent in the Garden of Eden tempting Eve to eat the fruit from the Tree of Knowledge of Good and Evil.

Basically, food bullying becomes as cut and dry as high school peer pressure … What will one drink hurt? What’s the worst that can happen? Everyone’s doing it. Who cares what your parents think? Just Do It!

Let me be clear. I am not placing all of the blame on the boy who offered up the cookie in this case. I cannot fault him for being uneducated and the boy who ingested the cookie should have known better.

But, I do wish more people were educated and knew the following facts:

  • Every single label has to be read on packaged food.
  • If label says “Processed in a ___ facility,” the food cannot be eaten.
  • Food from a bakery is never allowed.
  • Food from a restaurant usually cannot be trusted unless you speak to the chef.
  • If someone has a peanut allergy, most chocolate is not safe. Even if the chocolate does not have peanuts in it, most is made in a peanut facility.
  • Many kids can go into anaphylactic shock (death) if they get the allergen on their hands or if it is in the air. Consequently, eating just one bite or half of a cookie can be deadly.

I dream of a day when the responsibility of food allergies is not just a one-way street. How much different would the outcome have been in this particular case if they boy who had the cookie would have said, “No, man. You’re allergic. You better not risk it.” Just a few simple words could have saved a life.

In this day and age, many people still just don’t get it. Quite often, us food allergy mamas are viewed as high-maintenance, selfish people who think the world revolves around us. Quite often, eyes are rolled and sighs are breathed when parents of healthy children find out they will be sharing the school year with a child who has food allergies.

The bottom line is this … My child can die from eating certain foods that most people don’t think twice about. I am not being dramatic; I am being honest. I am doing my best to ensure that my son understands the severity of his condition, but it would be comforting to know that other people understand the facts as well.

Children of all ages need to be educated about food allergies and their awareness needs to be raised. The word needs to be spread. Feelings need to be felt and consideration needs to be given.

After all, you never know when a child like my little boy will pop up unexpectedly in your child’s life. It could be anywhere; Sunday School, sliding down the slide on a playground, high-fiveing him at a birthday party … or maybe even in his freshman class in college.

Categories: Food allergies | Tags: , , , , , | 7 Comments

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