Yisrael, my 7-year-old son with DS, was born a healthy, beautiful baby. His nice development excited us every step along the way, promising a bright future!
Years later, however, we found ourselves standing in the dark. We couldn’t figure out what had gone wrong. Gradually, his development slowed down.
What did Yisrael need? Was he low functioning? Did he need more therapy? I thought we were giving him everything he needed.
Deep inside, I knew something was preventing him from being all that he could be.
To understand the magnitude of change, allow me to start at the end.
“Who wants to go to the park?” I ask the kids, when I would have hesitated, just a few months ago.
Together with the others, Yisrael shouts “ME!” As he shouts excitedly, he gives a big jump 2 feet off the ground! And then he adds a few more jumps of excitement!
Several months ago, Yisrael couldn’t jump; this is his first jump ever! After years of therapy and encouragement, which didn’t seem to bear fruit, today he jumped? Just like that?!
On the way to the park, together with the others, Yisrael walks down the steps of the building.
Just recently, he would pick his arms up, waiting for me to carry him.
Now he walks up and down so nicely, saying “levad, Me” (all by myself).
Yisrael runs ahead with the other kids.
Just recently, I had been pushing Yisrael, who didn’t even want to walk, in the stroller! This is his first time running!
The huge smile on his face explains the difference.
This is the journey I experienced with Yisrael, who has been recently diagnosed with JIA (Juvenile idiopathic arthritis).
Oct 2015: (age 2)
One step at a time… He’s walking!
We called Yisrael’s grandparents to share the news! This morning, when some girls in my daughter’s class were bragging about their little siblings, who walk so early… 9 months, 10 months… my daughter joined the conversation: “My brother learned to walk at 2 years … Ya’ know how good that is for Down syndrome!!!!”
Often refusing to walk, I ended up pushing Yisrael in the double stroller, side-by-side, with the baby.
Recently, I noticed a small “rash” on Yisrael’s skin. The doctor prescribed a cream that worked, but a short while later, it came back. Little areas, in all different places around his body, kept appearing. Even dermatologists didn’t properly diagnose his skin condition. The redness looked different, on different parts of the body. More creams, more frustration.
We visited another dermatologist, who instantly declared “Psoriasis”.
The treatment protocol called for therapy in the light room – “phototherapy”, only one minute at a time, 3 times a week, for 3 to 6 months.
Overwhelming enough as it was, we decided to give it a try. (Eventually, we saw that it helped tremendously!) Everyone could see Yisrael’s discomfort, and it was surely distracting him from learning and developing.
Chanukah Vacation, 2018: (age 5)
One of the kids noticed that Yisrael was walking funny. He was not bending his left knee! The next morning, the same thing happened.
“Did you fall Yisrael? Did you get a bang on your knee?” Yisrael did not answer, but was it because he didn’t yet talk, or because he didn’t know? When I asked him to bend his knee, he said, “ooowww!”
The pediatrician suggested taking him to the emergency room to clarify things up. At the emergency room we experienced X-rays, ultrasound and curious doctors and nurses who watched Yisrael show off his strange walk.
There were still no answers. This was a 6-week-ordeal of daily Neurofen, weekly orthopedist visits, cranial sacral therapy (continued from infancy).
The only way to further research the problem, was to do an MRI under general anesthesia. The medical recommendation, however, was not to run for the MRI. What to do?? We decided to put off the MRI.
I watched Yisrael as he walked around the living room and realized – He is walking normally!! I sent a silent prayer to Hashem. Thank you. Hopefully, this was all behind us.
Winter, 2019: (age 6)
A year had passed since Yisrael’s strange walking saga, and we woke up this morning only to discover that it was back again. Only this time, things were worse. He refused to even stand on his leg, preferring to sit and scoot. Where was my walking child? Had we reverted to non-walking days? This second round also lasted about 6 weeks, and as the previous one, left us clueless.
Yisrael was in his last year of kindergarten, and we had to decide where he would go for first grade. There were two schools that I had in mind for him, but when I suggested them to his kindergarten teacher, she shook her head. “Ricki, your son will not be accepted in either one of these schools. He doesn’t speak, run, jump or socialize well enough. His processing is too slow.” Although I realized that she was trying to speak gently, I understood the message: Yisrael is low functioning. I must be realistic and send him to a school suitable for low-functioning children like him. I stared at her dumbstruck. Realistic? My son is low functioning? Was she talking about ‘my’ son?
To convince me, she showed me a video that Yael* the physiotherapist took of a recent session with Yisrael. In the session, Yael took Yisrael laboriously through some moves. When he completed his exercise, she asked him, with a smile, whether he wanted to repeat them. In the video, I watched my son stare at Yael without response. Endless seconds seem to tick by before I heard my son’s slow reply “yes”, and saw him rise ever so sluggishly to his feet. I felt a chill, as realization hit: not up to par. But something in me still resisted; this was not the Yisrael I knew.
Meanwhile, we were trying to deal with Yisrael’s hearing loss. It had been decided that he did not need tubes, but rather hearing aids, and we scheduled him for surgery. Now I felt sure that his delayed development in certain areas must have had something to do with his hearing loss!
Hashem sends His blessings in strange packages. Because of his hearing loss, Yisrael was now eligible for a school that focused on speech and communication, and he didn’t need to go to a school geared for low-functioning children with Down syndrome. We were ecstatic with his new school. It felt like it was designed just for him!
I discovered the referral we received a year ago for an MRI. I realized that I must act quickly. After he receives his implants for the hearing aids, he will no longer be able to have an MRI. It’s now or never.
With the MRI results in my hand, we visited Professor Hashkes, the rheumatologist in Shaare Tzedek Medical Center.
I was shocked at what the professor told me: Yisrael has JIA, (Juvenile idiopathic arthritis) in many joints, including in his knees and his right wrist! This meant that Yisrael had been suffering from inflamed painful joints. To think that any time Yisrael tried to use his joints to stand, to walk, to draw, he had been confronted with pain and stiffness! No wonder he was walking funny. I now understood that he chose to scoot on the floor because walking was just too painful. All this time we thought he was a “lefty”. Now I became convinced he was a “righty” and had simply been unable to use his right hand; never complaining, just choosing his left. I felt heartbroken knowing that my son had been in pain, but still did not realize what a difference this diagnosis would make for Yisrael’s quality of life.
Professor Hashkes patiently explained to me that Yisrael would need weekly injections of methotrexate. This medication is also used as chemotherapy, but Yisrael would get only a tiny dose. This would fight his JIA (an auto-immune sickness) by suppressing his immune system. I worried about this aspect, with Covid rampant. At the same time, this would also possibly help his psoriasis, which often comes hand in hand with arthritis, as they are both auto-immune sicknesses.
Yisrael would also need: medicines to fight nausea, folic acid and vitamins, monthly blood tests, and PT special exercises, so he wouldn’t lose his range of motion in his inflamed joints.
This was so scary. “Does he really have to do all this?”
“Oh yes,” said the rheumatologist; “Yisrael must start the injections immediately, as well as a one-time cortisone shot in his wrist and knee joints, under general anesthesia. Otherwise, the arthritis will cause permanent damage, eating up his joints. We don’t want him to end up in a wheelchair!”
I went home feeling so confused. The combination of clarity and worries! How would the side effects of the medicine affect Yisrael’s simple happy life? What will I be doing to him?
Just a few months have passed. The main effects of the medication are not the side effects!
“Yisrael is doing so well academically, socially and physically!” says his teacher. “It’s as if Yisrael was sick at the beginning of the year, and we didn’t even know it!!”
Thursday night, Yisrael is sleeping.
Allow me to end at the beginning:
From day one, Hashem held our hands, every step along the way.
I am watching Yisrael sleep so peacefully.
Despite all he’s gone through, the love and security he feels, is so obvious.
Being his mother gave me the chance to realize how much I too, am loved by Hashem, our Father.
I too, can feel peaceful and secure, despite all I’ve gone through.
Often, I think about this saying, that I appreciate so much:
“Sometimes, when you’re in a dark place,
You feel like you’ve been buried.
But actually, you’ve been planted.”