I will never hear my little boy say, “I love you, daddy.”

by Matthew Brooks

I was speechless and I was devastated.  I was broken inside when that thought first came into my mind and echoed there for what felt like an eternity.  Yet it wasn’t I who was speechless.  It was my son.  My little boy.

As I drove home from work a little over a year ago my wife, Jennifer, called and delivered to me news that would break any parent’s heart: our son probably had what we would later learn was called Childhood Apraxia of Speech, or CAS.  CAS is a motor speech disorder in which the developing brain is unable to create a pathway to communicate with the jaw, tongue and lips.  In essence, while a child knows what they want to say, the ability to deliver that message from the brain to the mouth is interrupted.

Will we ever talk about cars, or space, or God?

Little is known about why CAS occurs or who it chooses to affect.  However, what is known is that on occasion, some children never develop the ability to speak clearly or articulately.  They live with speech impediments and, in extreme cases, never speak at all.

When Jackson was only a couple months old my wife and I noticed that he wasn’t babbling or jabbering the way we thought he should.  His “baby talk” was missing certain sounds and he never really developed the ability to create certain combinations of consonants and vowels.  Frequently he would substitute one sound for another, using the language development that he did have in place of the proper and correct sounds.  Silently we both wondered, what was wrong with our precious little boy?  Why wasn’t he talking and babbling the way other children his age were?

I will never hear my little boy say, “I love you, daddy.”

These silent fears were easily explained away as, in our joy as parents, we simply overlooked any issues.  I would say to myself, “Oh, he’s just taking a little longer to develop than other kids.” Or, “It’s not a big deal; his older brother was a late talker, too!”  In my desire to be the father of “just another normal boy”, it became easy to justify and rationalize to myself why he wasn’t talking and developing speech at the rate that he should.

At his two year annual physical, Jackson’s pediatrician recommended that we explore speech therapy as a way to develop and nurture his speaking ability.  At that time we weren’t sure what was causing his delay in speech and neither was his doctor.  The pediatrician mentioned that there were any number of causes for a delay in speech development and Jackson could likely benefit a great deal from it.  In every other way he was developing perfectly: he was right where he was supposed to be on every chart from height and weight to physical motor skills to his cognitive abilities.  Jackson clearly understood things that were being said to him and was able to do all the things other children his age could do: he could follow directions, he could pick out objects that were spoken about in books, he could feed himself, he could run and jump and play with the best of them and he could throw some tantrums to make any other toddler jealous!  What he was lacking however, was the ability to articulate what he so clearly wanted to say.

When, oh when, will you tell me that you don’t like eating broccoli?*

As Jackson was growing older and he was exposed to other children his age we noticed that often times he would play alone and not join in with the larger groups.  At the mall play areas and on the playground, he was always on the other side of the jungle gym from the crowd and if the group would move in his direction, he would deftly and quietly move away from them.  He never cried or whined about it, he just nonchalantly drifted the other direction.  As we would watch from a distance my wife and I would reason to ourselves and one another: “Oh, we’re both introverted people and always the wall flowers in crowds, Jack is just uncomfortable in large groups, too.”  It became easier and easier to explain away why it was that he never seemed comfortable around other children.  Even as they laughed, played and hollered in glee, Jackson would quietly climb and jump and slide, never joining in the group as a whole.

In a one on one environment or in a group of people that Jackson was familiar with, he would communicate by pointing and grunting.  We, the adults in his life, would then begin a grand guessing game, trying to figure out what it was that he wanted.  “Do you want juice? Do you want to read?  Do you want to get another toy?”  and so on until he nodded his approval after we finally guessed correctly at what it was that he was wanting.

I will never hear my little boy say, “I love you, daddy.”

We began to introduce sign language to Jackson and he readily learned, picking signs up quickly and using them to great success.  It was clear to us and to the doctor that his understanding and reasoning was excellent.  Why then, would he not talk to us?  Didn’t he know how much I longed to hear him tell me that he loved me?  Why, oh why, oh why, won’t you talk to me, Jackson?  My son, I want so badly to hear your voice!  Just once, I would pray, just once to hear him say, “good night, daddy” or “more juice, please, mommy!”

Instead, the only words that we heard were those that easily indicate frustration or anger.  Those words that, as my wife and I learned, came from a different place in the brain.  Jackson could say “no” very easily.  He could also yell and cut loose on us with a tantrum of all sorts of consonant and vowel combinations in his frustration and anger.  Why then, we would wonder, can he not use those combinations to form words and complete sentences?

Are you ever going to be able to ask to watch Toy Story for the sixteenth time this week?

As we began to look for a speech therapist for Jackson we also began to learn about how speech and language development worked in the human brain.  While I silently fumed at the world about how unfair it was that my son couldn’t speak, my wife began to read about language and to educate herself on early childhood development.  Her innumerable hours combing the internet and speaking with speech language pathologists found her some of the answers, which she patiently and lovingly relayed to me.  She told me that when a person or child is upset or frustrated, the communication that is able to be channeled outward in loud outbursts or yelling comes from a different place in our brain than does the language that we use for effective communication.  When we yell or scream in anger, rage, sadness or frustration, those words take a different path to exit our mouths than the language that we use to speak to one another in normal conversation.

During Jen’s quest to find the best speech and language development training for Jackson, she found Birth to Three.  Birth to Three is an organization in King County, Washington that specializes in children who have developmental delays from, as the name says, birth to the age of three.  After an initial consultation with several speech language pathologists (SLP) which involved them talking to and with both Jackson and us (which he saw as lots and lots of playing) a learning plan was developed.  Jackson would meet with an SLP twice a week and she would begin to work with him, coaching him and teaching those parts of speech that he was struggling with.

Just say train!!!!  Why won’t you say train?  Why do you say choooo chooooo?

His SLP began coming to our home routinely and would work with him in all manner of ways.  Primarily by playing with toys she began to coach Jackson in how to formulate sounds and words.  It was incredible to watch, and in turn, learn how the development of speech happens.  Those words and sounds that we both use and misuse so many hundreds and thousands of times per day all must begin somewhere and some place.  Jackson, after nearly two years, had not developed many of the tools of speech that we take for granted every waking hour.  Most of us grow, and in the earliest and most formative of months of our lives we watch those around us speak and watch how their mouths and lips move in order to formulate sounds and words.  Jackson, however, had watched all of this, seeing his mom and I talk, listening to his grandparents speak, his brother telling him how much he loved him and yet, he had not been able to make his mouth work the same way.

Imagine how immensely frustrating a process that must have been!  To know and to understand so clearly what it was that you wanted to say yet to be so utterly helpless to communicate back to those who are around you.  Jackson knew what it was that he wanted to say, but was helpless to say it.  He knew by sight what everything was but couldn’t speak the word itself.  As he tried to adapt and make do in the world around him he began to substitute sounds for words: when he saw a dog, he would say, “Woof woof!” or when he saw a car or truck he would say, “Vrooooom!”

Will we ever be able to talk about why the designated hitter is a bad idea?

As he worked with his SLP he began to develop the building blocks of our English language and began to use them.  Jen and I were delighted to see him learn and grow and to use his sounds more and more proficiently.  Yet the process was agonizingly slow.

Then came the news.  While at our home on her routine visit, Jack’s SLP shared with Jen her concern.  She tried in every way to let us know that it was something that could be dealt with via sufficient intensive therapy sessions, but she was concerned that Jackson’s speech delay was something greater than the normal slow-to-speak issue common with young children.  Her thoughts were that he could possibly have Childhood Apraxia of Speech, which differs from normal speech delays in that it will not go away on its own.  CAS is a condition that he will carry with him forever and will, likely, always have some effect on his life.  Jen asked, as every parent would, what this meant.  She shared with Jen that in some cases children have never developed the ability to speak normally.

The meeting ended at the normal time and Jen promptly called me, nearly in tears.  I could tell instantly that something was bothering her a great deal, and she relayed to me what she had been told.  I asked what the end result could be.  When she told me, my first, and only, thought was:

I will never hear my little boy say, “I love you, daddy.”

What kind of unfair world was this, I asked myself.  Inside I raged and seethed, not knowing what to say to my wife.  I don’t recall what, if anything at all, I said.  I simply remember arriving home and hugging both my wife and son as I had never hugged them before.

After spending a few selfish hours wondering why me, why us and how are we going to deal with this situation, reality began to dawn on me.  Why was I feeling like this was the end of the world?  It’s not like my son had been taken from us.  No, he was the same little boy that he had been earlier in the day and he was the same little boy that he was always going to be.  And my wife and I now had a quest.  We had a mission and we now knew what the enemy was.  All that remained was a strategy of how to defeat this dragon that had arisen.

When will he be able to talk with me?

Now armed with a preliminary set of information, we set about learning everything we could about CAS.  We read and read and read, we asked questions and we scheduled appointments.  We took Jackson in to his pediatrician who spoke with us openly and frankly and gave us some great peace of mind when he told us that he had never had a CAS patient who never spoke.  Every single one of them developed speech and language skills through vigorous therapy and practice.

So practice we did.  At home, at grandma and grandpa’s house, at Target, in the car, and in line at the super market, we would work with Jackson, coaching him in his language development.  No longer would pointing and grunting be sufficient, we were now on a mission to help him develop beyond the CAS limitations.  Our overall goal was to help him learn the skills he would need later in life to function fluidly in this bitter world.  The last thing that the world needed was a gap in his armor in which vulnerabilities could be exploited.  Life can be hard enough without giving some ignorant fool the ammunition with which they could hurt him.

I will never hear my little boy say, “I love you, daddy.”

We increased Jackson’s speech therapy sessions to three times a week, extending the sessions from 30 minutes to 45 minutes, and at home we worked and worked and worked.  Some days went better than others.  There were days where he was either too tired to really work hard pronouncing things and his frustration would show.  On “school days”, as we referred to the days when he had speech therapy, we would bring him home and he would be exhausted; sometimes so much that he was asleep before we had buckled him into his car seat.  But the progress he was making was incredible!

By this time Jackson was attending group speech therapy classes at Holly Ridge Center in Bremerton, Washington.  How they changed his life!  Through patient and exhausting classroom sessions, the teachers and instructors worked with Jackson and other children his age at mastering the basics and fundamentals of speech.

Will I ever hear you read me a story, son?

Slowly his vocabulary grew.  From five words to ten words, and then to twenty, and then to forty, and then fifty!  As Jackson learned to speak new words, one at a time, he would first form them slowly, hesitantly.  There were some words that he would speak aloud just once, then it would disappear into the recesses of his mind for a day or two, sometimes a week.  Then, suddenly, BLAM!  There it was, in regular, every day usage.  It was as if he had to try it out once or twice, then internalize and study it and figure out the right time to surprise me or Jen or his grandparents.  And surprise us he did!  Over and over he brought out new words, adding to his repertoire words that were slowly increasing in difficulty.  Multiple syllable words, of course, being more difficult for him to master than one or two syllable words, they were few and far between in the beginning.  Now though…..

Now, he just won’t stop.  He’s a diesel engine: slow to warm up and get running, but once that fire was lit, it never died.  Jackson is now speaking in near full sentences and can make himself understood by complete strangers, some of whom will never know that they encountered a child with a speech delay.  His hard work pays dividends every single day and it is amazing to watch him smile as he knows he is able to communicate better and better with every speech therapy session and every new word he learns to say.

I will never hear my little boy say, “I love you, daddy.”

There are words and sounds that Jackson still struggles with, but he doesn’t back down or shy away from any challenges.  He tries and tries and tries again to find just the right placement for his tongue, how to align his lips in order to make that oh so small change necessary for the right sounds to come out in the right order.  He’s always surprising us with his ability to learn and master new things, and when Jen or I worry about something, he’s quick to use his new favorite phrase, “No worries mom, no worries!”

So, in the end, it really is about no worries.  Jackson is going to be just fine.  He’s going to learn to adapt and overcome whatever it is that life sees fit to throw his way.  This dragon that he has stared right in the eye and still fights against will lose to him.  His tenacity and work ethic are being formed and refined even now, just as his speech is developing.  As he learns and grows, he teaches me every day to never under estimate what a three year can do.  If he can overcome this at such a young age, what will he overcome next year or ten years from now?  How about twenty?

Son, why won’t you tell me “Good night!”?

Three days ago as I prepared to leave for work, Jackson came up to me, as he often does, and smiled.  I paused for a moment and looked him in the eye and asked him, “What do you need, bud?”  I was expecting him, as he does most times, to ask me for juice or to watch Mickey Mouse or for some popcorn.  I was perplexed as he didn’t say anything at all.  He just stood there, looking up at me, smiling.  I knelt down and looked into his eyes and, as he maintained the biggest grin I’ve ever seen, he said to me, “I love you, daddy.”

I have heard my little boy say, “I love you, daddy!”

 

 

*Jackson loves broccoli

Today’s act of manliness: Persevere, no matter how hard those days are.  And always remember, “No worries!”

 

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