[Parenting Diary] The day I was told my child 'might have a developmental disability': A story about the intense turmoil I felt as a father of two and a nurse, caught between my head and my heart
Good evening! This is KP Nurse.
I work on the front lines of life as an active nurse, raise two daughters as a father, and am currently preparing to open my own administrative scrivener office.
Today, I'm going to talk about my eldest daughter.
Although my eldest daughter is now happily attending elementary school, she was actually diagnosed with Autism Spectrum Disorder (ASD) and attended developmental support therapy until she was of preschool age.
This is a record of the conflict I experienced when my head and heart were torn apart the moment I became the parent of a child with special needs, despite having seen so many patients and their families in the medical field.
1. From 'wait and see' at the 18-month checkup to the declaration at the 3-year checkup
The first time my eldest daughter's development was pointed out was during her 18-month checkup.
'There are some parts that are a little concerning, but let's wait and see for now.'
At that time, I told myself somewhere in my heart, 'She's still small, and everyone grows at their own pace,' and I didn't face the reality.
However, the decisive moment came at the 3-year checkup.
'As I thought, there is a slight imbalance in her developmental steps. Would you like to visit a specialized hospital?'
Facing the referral letter to the hospital, my wife and I were speechless.
That night, my wife and I talked about it over and over again.
'If we go to the hospital and she gets a formal diagnosis, won't we be saddling her with a major handicap that will never disappear for the rest of her life?'
'Are we the ones who are going to make her 'sick'?'
I felt like my chest was being crushed by fear and a sense of guilt toward my own child.
2. My past self who thought, 'Why did the parents wait until it got this bad?'
In fact, I was working in the psychiatric medical field.
In terms of knowledge, I should have understood it better than anyone else.
I had seen more than enough children in the field whose symptoms had progressed to a level that caused significant disruption to their social lives, leading to secondary disabilities because the intervention of welfare and medical care had been delayed.
Every time I encountered cases that only reached the hospital after leading to school refusal, social withdrawal, or acts of harm toward others or themselves, I would think to myself at work,
'Why didn't the parents notice and bring them in at an earlier stage?'
Early detection, early intervention.
I understood 100% in my head that this was the only way to save a child's life.
Developmental therapy is, so to speak,'a splint for a young tree.'If you gently apply a splint to support the tree while it is still small and soft, the earlier the intervention, the more the tree can grow straight toward the sky thanks to the effect of the splint.
And yet.
When my own beloved daughter became the subject, even though I knew it with my knowledge as a nurse, my emotions as a father were unable to decide on the visit.
I had fallen into such an unbelievable and strange state.
My wife was also deeply troubled.
“There are plenty of children at daycare who are rougher with friends or shout louder than our eldest daughter. She isn't unable to sit still, nor is she hyperactive, so why must only our daughter have to go to the hospital?”
The guilt of wondering if our own parenting or the way we interacted with her was wrong.
And, caught between the rejection of not being able to accept the reality before us, we wandered in the darkness.
3. A poem that saved our hearts
In the midst of that conflict, I encountered a wonderful poem on the internet.
It is a famous poem titled “Welcome to Holland”, contributed by Emily Pearl Kingsley, an American writer who has a child with a disability.
The moment I read these words, which have been officially translated by the Japan Down Syndrome Society, I felt the tightly wound strings of my heart gently unravel.
“Welcome to Holland”
I am often asked, “What is it like to raise a child with a disability?”
When that happens, I tell a story like this so that even those who have never had the unique experience of raising a child with a disability can understand what it feels like.
Waiting for the birth of a baby is like planning a wonderful trip.
For example, your destination is Italy.
You buy a mountain of guidebooks and make fun plans.
The Colosseum, Michelangelo’s David, the gondolas of Venice.
You might even learn some basic Italian.
It is very exciting.
And then, the day you have been waiting for for months finally arrives.
You pack your bags and finally set off.
A few hours later, the plane carrying you lands.
And the flight attendant comes over and says,
“Welcome to Holland!”
“Holland!?”
“What do you mean, Holland?? I made arrangements to go to Italy, I’m supposed to be in Italy. I’ve dreamed of going to Italy my whole life.”
But the flight plan has changed, and the plane has landed in Holland.
You must stay here.
The important thing here is that you haven’t been brought to a scary, dirty, unpleasant place full of hunger and disease.
It’s just a slightly “different place.”
So, you have to go buy a new guidebook.
And then, you have to learn new words you didn’t know before.
If you do that, you will surely have new encounters with people you have never met before.
It’s just a slightly “different place.”
Time flows more slowly than in Italy, and it may not have the glamour of Italy.
But if you stay there for a while, catch your breath, and look around, you will realize that Holland has windmills, tulips, and even Rembrandt paintings.
But the people around you are coming and going to Italy.
And they might brag about how wonderful the time they spent there was.
Surely, for the rest of your life, you will say, “I was supposed to go to Italy, too. That was the plan.”
The pain in your heart will never, ever go away.
Because the dream you lost is just too big.
But if you spend your life mourning the fact that you couldn’t go to Italy, you will never truly enjoy the unique wonders of Holland, the precious things that can only be found in Holland.
Author: Emily Pearl Kingsley
4. Loving the scenery of Holland, not Italy
When I finished reading this poem, I couldn’t stop my tears.
【Surely, for the rest of your life, you will say, “I was supposed to go to Italy, too. That was the plan.” The pain in your heart will never, ever go away. Because the dream you lost is just too big.】As the poem says, it really touched my heart that it speaks to the honest feelings of a parent—that it’s not that Holland is better than Italy—and the importance of accepting and living with it.
Ever since our eldest daughter was born, we had been preparing to go to “Italy” (the so-called typical developmental route).
But the plane we were on landed in “Holland.”
Holland is by no means a terrifying place.
It is just a beautiful country with slightly different scenery and language than Italy.
Our eldest daughter is not sick.
It is just that the place where our daughter and we are right now is called “Holland.”
The moment I could accept that from the bottom of my heart, I made up my mind to take my daughter’s hand and go to the hospital.
My wife and I took our daughter to a specialized outpatient clinic and underwent various tests.
As a result, we found there were no physical abnormalities, and her intelligence was at a high level.
However, the attending physician said this:
“Because her intelligence is high, it is often overlooked, but as she enters elementary school and group life becomes more serious, she may feel difficulties or struggles in living. Why don’t we provide some developmental support now while we can?”
At that suggestion from the doctor, my wife and I were able to nod without hesitation and say, 'Yes, please.'
5. Straight growth brought about by a splint
That was the beginning of our life of therapy through hospital visits.
There was no medication; it was a program where we worked with specialists through play and interaction to compensate for the areas where my child struggled and to develop the areas where she excelled.
As a result, the effects were visible.
My eldest daughter's slightly shaky articulation improved beyond recognition, and as she became better at using her body, her physical abilities also visibly improved.
I was able to experience firsthand, through the growth of my own child, the 'effect of a splint' that I had once thought about in the workplace.
Fortunately, before my eldest daughter entered elementary school, she was able to successfully graduate from therapy, with the doctor saying, 'From now on, you can just come to consult us whenever any issues arise.'
Now that she is an elementary school student, my eldest daughter has no major difficulties and spends every day smiling and enjoying her school life.
6. To you, who are struggling just as I was on that day
What if I had ignored the suggestion from the health checkup back then and refused to visit the hospital?
What if I had looked away out of pride or fear, thinking, 'It's not because of how I raised her' or 'I don't want to label my child'?
I would not have been able to give my eldest daughter that wonderful 'splint.'
And my eldest daughter might have been suffering alone in elementary school with a difficulty in living that no one noticed.
Looking back now, I can say with conviction that 'I am truly glad we went to the hospital.'
Even if our child has landed in Holland, if we as parents do not accept that reality, we will never be able to notice the beauty of the windmills or the loveliness of the tulips that can be seen from Holland.
We would only be looking at Italy and would overlook our child's true self.
It is not the hospital that inflicts the wound of a handicap on a child.
Hospitals and therapy are the 'best cheering squad' and a 'gentle splint' for our children to grow up straight and true to themselves without being defeated by the winds of society.
To the dads and moms who are crying alone right now after seeing the results of a health checkup.
Please, do not be afraid to take that first step.
The scenery in Holland is much warmer and more beautiful than you think.
Thank you for reading until the end.
I hope tomorrow will be a wonderful day for you as well.
If you could support me with a like or a follow, it would be a daily encouragement!
#Parenting #ChildRearing #DevelopmentalDisability #AutismSpectrum #ASD #Therapy #WelcomeToHolland #18MonthCheckup #3YearOldCheckup #NurseDad #EarlyIntervention #ChildGrowth #DadParenting