Special Needs

My Life in Holland

My son Yanky is thirteen years old. He’s the youngest of ten, and he’s our second ben yachid — I have one mainstream son, and one with Down syndrome.

I didn’t know Yanky’s diagnosis before he was born. I was still in recovery and my husband had gone home, and we had no idea anything was wrong (or right!) with the baby.

My mother was sitting with me when a doctor came by. He asked me who she was. When I said it was my mother, he asked, “Can I talk about the baby in front of her?”

“Absolutely,” I told him, bewildered — why on earth not? It didn’t enter my mind that anything might be wrong.

That’s when the doctor dropped the bombshell: “We sent off some blood work to the lab because we think the baby has Down syndrome.”

I was shocked.

My instinctive reaction, though, was to turn to my mother and say, “Okay, I guess we’re going to Holland.”

This comment was based on an article I’d read as a teen, in which Emily Perl Kingsley compares the experience of having a special needs child to landing in Holland after having prepared for a vacation in Italy [see sidebar].

Looking back, I think my reaction was a matnas chinam. The fact that that article jumped to mind instead of shock, fear, anger, guilt — all very normal and understandable reactions to such news — was a gift.

I think my mother was probably more shocked than I was, though of course she didn’t show that to me.

I never looked at our son’s diagnosis as a tragedy. A friend came to visit me when the baby was a few days old, and asked me, “Are you keeping him?”

I didn’t even know it was an option not to keep a child!

“Of course I am!” I replied. “Maybe you want to take one of my older kids, though?” It was a joke, of course, but my point was made — this is my child, just like the others, and we’re going to love and care for him.

And that’s been our approach all along.

I didn’t know it at the time, but I was really lucky with Yanky; he has no medical issues — not with his heart, not with digestion — although many children with Down syndrome are born with medical challenges.

He was in the NICU for a short while after the birth, but not for any major issues;other parents of a Down syndrome baby may run to doctors daily, or need to arrange complex cardiac surgeries for their newborns. Yanky’s health is a huge matanah.

And so is the fact that he’s very, very cute!

Of course, we have ups and downs. Once Yanky got lost, and almost reached the highway before he was found and brought home. That was a major scare.

Another day he wanted to make a Lag B’omer fire and he lit a fire in the kitchen — it was a neis that nobody was hurt and nothing was destroyed!

By now, baruch Hashem, things are more stable.

When I look back at the journey we’ve been on, I want to tell other parents who have a baby with special needs that

When Yanky was born,
I was overwhelmed by the new world I was entering

I felt like I needed an instruction
manual — who should I be speaking to? What therapies should we be doing?

Now I realize I should have just let myself be a kimpeturin and let Yanky be a baby!
There was plenty of time to start therapy once he was a few weeks old.

Parents who have children born with special needs now are lucky. There are so many services and organizations. There are many therapies available in the frum world and yeshivahs like Banim L’Makom. There’s the Hamaspik School so children don’t have to attend public schools.

Thirty years ago, there was nothing like this — we’re fortunate to live in this day and age. And with this help and support we can focus on enjoying bringing up our children with special needs.

Last December, we made Yanky a bar mitzvah. We created a beautiful, special event — because he needed it, and because we have nothing to hide! We wanted to show how proud and happy we are that he is our son, and that if this is how the Eibershter created him, this is ideal. We went all out — nice hall, music, centerpieces, you name it.

Yanky had been talking about his bar mitzvah ever since his brother’s bar mitzvah six years ago. He wanted to say a pshetel and put on tefillin and get picked up on a chair, just like Shragi. In fact, that was the highlight of the affair for him — being lifted on a chair. It’s the first picture he turns to every time we look at the bar mitzvah album!

In addition, Yanky chose a song to sing alone at the bar mitzvah seudah. He sang “Achas Sho’alti” with confidence, passion, and joy. It was a beautiful moment.

So many people attended that bar mitzvah. Some just came in to wish us mazel tov, but the atmosphere was so spirited and wonderful that they stayed until the end! Yanky really did us proud — shaking hands, thanking everyone for the presents they gave. He was a star.

I never liked it when people speak about children with special needs having heilige neshamos — every Yid has a heilige neshamah. But maybe because children with special needs are purer, less filled with distraction and frivolity, the heiligkeit comes through more clearly.

For example, ever since Yanky was a little kid, as soon as Yom Tov was over he’d run to the calendar to check when the next would be. We should all live with that cheishek!

And the same thing happened when he began putting on tefillin. Every bochur should be as excited as Yanky was to begin wearing tefillin — and the enthusiasm continued.

After Succos, when he hadn’t put on tefillin for an entire week, Yanky woke up and rushed downstairs. He was still in pajamas, eyes half-closed, but he was shouting with joy, “Today I can put on tefillin again!”

Thirteen years ago, my family was welcomed to Holland. And my message from here is: Holland may come with challenges, but at the same time, it is truly beautiful.

Auditory Sensitivity

My child is sensitive to loud noises
(e.g., sirens, vacuum cleaner).

My child seeks out specific sounds or types of music and appears calmer when listening to them.

Tactile Sensitivity

My child is irritated by certain fabrics or tags in clothing.

My child seems indifferent to sensations that are usually painful or to extreme temperatures.

Visual Sensitivity

My child is sensitive to bright or flashing lights.

My child tends to avoid eye contact.

Taste/Smell Sensitivity

My child constantly prefers bland foods and rejects foods with strong flavors or spices.

My child seeks out strong or unusual smells, such as sniffing food or objects.

Proprioceptive Sensitivity

My child prefers tight hugs or being wrapped in a blanket.

My child is unaware of body position in space (e.g., often bumps into things).

Social Sensitivity

My child becomes anxious or distressed in crowded spaces.

My child is hesitant or resistant to climbing or balancing activities (e.g., jungle gyms, see-saws).

Movement Sensitivity

My child dislikes fast or spinning movements

Vestibular Sensitivity

My child becomes anxious or distressed in crowded spaces.

My child is hesitant or resistant to climbing or balancing activities (e.g., jungle gyms, see-saws).

Please answer all questions before submitting.

Your Child’s Score is

  • 0-15

    Low Sensory Sensitivity

  • 16-30

    Moderate Sensory Sensitivity

  • 31-45

    High Sensory Sensitivity

  • 46-60

    Very High Sensory Sensitivity

0-15: Low Sensory Sensitivity

  • Interpretation: Your child exhibits low levels of sensory sensitivity, usually falling within the typical developmental range.
  • Recommendation: Generally not  a cause for concern. If you have specific worries or notice a sudden change in behavior, consult a healthcare professional for a comprehensive evaluation.
  • 0-15

    Low Sensory Sensitivity

  • 16-30

    Moderate Sensory Sensitivity

  • 31-45

    High Sensory Sensitivity

  • 46-60

    Very High Sensory Sensitivity

16-30: Moderate Sensory Sensitivity

  • Interpretation: Your child displays moderate sensory sensitivity, which may warrant intervention.
  • Recommendation: Consider sensory-friendly activities, sensory sensitive toys, or sensory sensitive clothing like noise-canceling headphones and weighted blankets to improve comfort. If symptoms persist, consult health care professionals.
  • 0-15

    Low Sensory Sensitivity

  • 16-30

    Moderate Sensory Sensitivity

  • 31-45

    High Sensory Sensitivity

  • 46-60

    Very High Sensory Sensitivity

31-45: High Sensory Sensitivity

  • Interpretation: Your child has higher than average sensory sensitivity that may interfere with daily functioning.
  • Recommendation: Seek a detailed evaluation by health care professionals for sensory integration therapy options and potential environmental modifications.
  • 0-15

    Low Sensory Sensitivity

  • 16-30

    Moderate Sensory Sensitivity

  • 31-45

    High Sensory Sensitivity

  • 46-60

    Very High Sensory Sensitivity

46-60: Very High Sensory Sensitivity

  • Interpretation: Your child demonstrates high levels of sensory sensitivity that could significantly interfere with daily life.
  • Recommendation: If your child displays this level of sensory sensitivity, it’s highly recommended that you consult with a health care professional for a multi-disciplinary assessment. You will probably be directed towards early intervention programs and specialized support.

Yom Tov Transitions Made Easy

NYC’s Top Accessible Adventures

The Yom Tov Parenting Survival Guide

Understanding OPWDD Eligibility: What You Need to Know

How Direct Support Professionals Enhance Quality of Life

What Is Com Hab and How Does It Provide Individualized Support?

6 Benefits of Respite Care for Families of Kids with Special Needs

Encouragement for the First Day of School

The Child Development Checklist

Spina Bifida — an Overview

My Life in Holland

Fostering Independence in Children With Developmental Delays

Understanding Intellectual Disabilities

What is Epilepsy?

Defining Dyslexia

Pathways to Potential

Understanding Down Syndrome

Early Intervention for Down Syndrome

Our Roller Coaster Ride

Understanding Cerebral Palsy

Understanding Autism

Autism Support

Social Anxiety Disorder

Confronting Childhood Trauma

Family Strategies for Anxiety

Separation Anxiety Overview

Understanding Post Traumatic Stress Disorder (PTSD)

Mental Disorder Prevention

Combating Depression in Elders

Depression Overview

Understanding Anxiety

Adult ADHD Action Plan

Sleep Strategies for the Anxious Child

Unlocking Potential

A Parent's Guide to Food for Kids With Allergies

Understanding Speech and Language Development

Sleep Strategies for the Anxious Child

Sensory Sensitivity Test

Feeding Your Picky Eater

Simple Sensory Activities

Decoding Diagnostic Tests

The Child Development Checklist

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Welcome to Holland

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.