About 25 years ago my husband and I adopted two infants with Down syndrome only four-and-a-half months apart. They were both very cute and kept me very busy, and I wanted them very much. But that story has already been told.
I’m picking up that story with this sequel. What happens when that absolutely adorable baby becomes a young adult. What then?
Fortunately, those adorable babies do not become youngFortunately, those adorable babies do not become young adults overnight adults overnight. You have time to think about it. Children with Down syndrome have developmental delays. This is one of the most accurate medical terminologies that I have ever come across. Mark it well. Delays. Memorize the word. Etch it in your brain. Keep it in front of your heart for whenever you feel breathless. Zerizut, alacrity, is a virtue that we value and long for, and measure ourselves up against. But delay—especially one programmed into the chromosomes—can also be a blessing. Some good things just take a little longer. A winding path has more lovely scenery, and what appears to be an end line is simply the pause that refreshes. There is another leg to this journey.
New mothers of children with special needs are concerned with meeting “milestones.” When my biological daughter was an infant, I didn’t know what a “milestone” was, yet she did she develop “normally.” Yet 15 years later, with nine-day-old Chana waking up in our home for the first time, I was indeed poring over the charts. Oh! At such and such an age, a baby is supposed to track things with her eyes. And at such and such an age, babies hold up their head, and they roll over and make this funny sound, and at such an age, they start talking. It was all there in the charts. The early normal, the late normal and the average of it. I resolved to coach Chana. I would do an excellent job; she could even be among the early birds. Whatever love, faith, prayers, blessings and (my) determination would do, with G‑d’s help, of course, would be done!
What is not on those charts is the age the typical baby begins to latch on and suck. I believe the usual range is between two minutes and several hours after birth. This is an automatic response. Chana, however, seemed to be not properly latching. After a few half-hearted sucks, she’d fall asleep, without consuming anything the little measuring lines on the bottle could measure.
“If she doesn’t drink 8 ounces a day, she will have to go back to the hospital,” threatened her pediatrician.
Fear struck my heart. She came from the hospital after all. Mommy goes to the hospital and comes back with a baby. That’s the line young children are often given. But for me, it was really true. Went in without. Came out with. To me, back to the hospital meant giving her back. Of course, it didn’t mean that, but I felt like that. And not only that. My formula needed to be supplemented with intravenous feeding? What about my maternal pride? Gevalt!
Fortunately, we were directed to Shoshana Klavan, of blessed memory. She had this gift for feeding babies. She also showed us how to tickle Chana’s little feet to keep her awake to drink her quota of formula.
During this intense period, I forgot about the milestone charts. I didn’t think about them until Chana was three weeks old, when this freaky thing happened: She rolled over. She was only three weeks old, and she rolled over.
Some professional said it wasn’t a real rolling over; it was some other kind of rolling over.
Yeah, sure. Chana was very much ahead of her milestones, believe me.
My suspicion that Chana was precocious was confirmed when she was three months old. She was speaking in full sentences.
“Avuoo!” chirped my Chana.
“Listen to that,” said I to my 15-year-old and 9-year-old. “She said ‘I love you!’ ”
“Avuoo! Avuoo!” My daughters, Devorah Leah and Freidel, cooed back at Chana.
“Avuoo!”
Avuoo became our code word and marching orders. Any supposed “delays” that Chana would “have” in the future were already pre-nullified. My daughter rolled over at three weeks and spoke at three months. If she took her time at some other “milestones,” she was clearly a genius who was entitled to make these decisions for herself.
That said, I was a little surprised when occasionally members of the community did not recognize the truth about Chana. But many did, and that made me happy.
Then came the momentous day when Chana was 5, and we were interested in the mainstream local kindergarten. She and I—and so many other mothers and their little girls—sat in a crowded classroom waiting for our turn to be interviewed. As we waited, Chana walked over to another child and bit her.
That was the first time she had ever shown any form of aggression to any human being. It was also the last time.
But that was that time. We were not especially well-received at that interview.
The whole experience was so odd that I had to view it as a marvel, rather than a disaster. Clearly, the Almighty had His own plans for Chana. Two years later, when a new girls’ school in our neighborhood opened and welcomed her, it seemed that we saw what G‑d had in mind. This was Chana’s school, and it was worth waiting for.
Chana had her own way of behaving. For example, she cringed at crowds and shunned any unpleasant vocalizations. OK, she was sensitive. She can be sensitive. She has special needs.
I thought like that, but now I don’t.
I became enlightened when Chana was about 9 and I got a glimpse of what her brain deals with daily. After she learned to read Hebrew, I began to teach her to read English. We each had a copy of the text: “The house is red.” I looked intensely at my text. I thought hard. The. House. Is. Red.
Chana was looking a little spacy. But she said: “The. House. Is. Red.”
Strange. She didn’t seem to be looking at the text. Probably she was looking at the text when I wasn’t looking at her. I studied her. But I couldn’t catch her looking at the text.
Chana had her own way of behavingCould it be? Oh, it couldn’t be.
“Let’s do it again. Could you read that sentence again, Chana?” I continued to think intensely. “The. House. Is. Blue.”
“The. House. Is. Blue.” She said it. Just like that!
I tried a numbers game with her. What number am I thinking of, between one and 10!”
She was pretty good at “guessing” numbers, but she clearly did not enjoy the game and soon changed the subject.
I have always noticed that when Chana and I have a conversation, if I am not focused on her—if my thoughts wander and dwell a bit on another topic, although I don’t miss a beat in the conversation—she becomes frustrated. “Pay attention, Mommy.”
“I am paying attention.”
“No! Pay attention!”
Once I asked her if she can sometimes hear people thinking. She grimaced and turned her shoulder to me, as though I had mentioned finding some three-week-old gefilte fish in the back of the fridge.
I will add that Chana never speaks lashon hora (slander or any negative talk about others). Whatever she hears in word or thoughts, it stops with her. I have always respected her for that.
The point of these anecdotes is that Chana (and my son Dovid) operate on a different plane. I’m not a scientist and will leave it to someone else to “prove,” but after living with Chana and Dovid for almost 25 years, this is something I know. Can’t convince me otherwise. Some great sages stood up for a person who had Down syndrome. I agree with them.
So now that they are 25, what’s next?
Chana looks very young. She could pass for 14, even 12. Some children’s size 12 clothing even fits her. She is slim, active, sparkly and still doesn’t pronounce everything just right. We will work on pronunciation. I must not let my 25-year-old daughter speak as though she is sometimes 4.
Five years ago, we put Chana in a “day-hab” program for special-needs people. The directors were very nice, and the program was progressive, and run with competence and care. Until now, Chana had been mostly “mainstreamed.” She was in classes with “regular” girls. Well, not always in the room itself; very often, she was tutored in the hallway. The academics were way over her head. Her tutors (“paras”) were devoted wonderful women and girls. And her classmates were nice to her. We all did the best we could.
So now, Chana will experience a “day-hab” environment. The program claims to train girls for vocations. How would this go?
The first year, it went well. Chana relished a curriculum made for her. She found friends that she could be goofy with and girls she related to. She stayed for a second year.
That, too, seemed to go well. She helped in a preschool class once a week. Usually, there was a reason why it could only be twice a month. Next year would be different. I signed her up for a third year.
The third year did not fulfill the vocational training part. I also noticed that many girls in the program had been there for many years and seemed to be doing the same thing, year after year, or at least at the same level of things.
I felt that Chana had more potential and that her abilities were not being recognized. She had “behavioral issues” now, which were preventing her from advancing, yet I felt those were a result of the environment. We pulled her out of the program and sent her to an inclusion seminary for girls in Jerusalem. Here, a small group of “special” girls had their own curriculum, yet interacted and joined with the mainstream seminary girls.
Gone were the behavioral issues. Chana simply blossomed.
I have a plant upstairs. One day, it began to develop a bud and the bud got bigger and bigger. I waited a long time. The bud got bigger, but that was all. It seemed it would be a bud, albeit a big bud, forever.
Then it blossomed. It just burst out in a single day! Lovely yellow petals, curling at the edges.
And so it was with Chana. Seemed she was a bud, yes, a growing bud for the longest time. I almost thought that was the way she was going to be.
But then she blossomed.
She became independent. She sped up. She spoke her thoughts and no longer hid behind my skirts. She returned from seminary, where she had worked three mornings a week in a preschool. She returned from seminary bloomed.
She now spends part of her week with my daughter Devorah Leah, and her family, where she has become a competent babysitter and mother’s helper. As well, a group of teachers take a car from the Crown Heights neighborhood of Brooklyn to Great Neck, N.Y., to teach in the preschool. She is one of them.
“I’m going to work!” Chana announces with a smile. She wakes up with plenty of time for breakfast but saves her oatmeal. All the other teachers eat breakfast in the car.
After three months, Devorah Leah observes: “There is no reason why Chana can’t get married. She is competent. She can do everything she needs to do.” Devorah Leah does not flatter unnecessarily, so I could believe her.
I thank G‑d that we had faith in Chana and put her in an environment where she could blossom. A program good for one year may not be good for two. We have to expect our children to make progress even if the programs don’t.
We live a block away from Machon Chana. The Lubavitcher Rebbe founded this warm environment where women go to learn Torah and related Jewish women’s studies. Everyone is welcome. While many of the classes are advanced, there are also classes on a more basic level.
Chana was eager to try it. She was home, and was available on Thursday nights and all day Sunday.
The Thursday-night class on marriage and shidduchim was a delight for her. She also enjoyed the following session, where she was paired with another girl to study the weekly Torah portion.
She tried the Sunday classes, too. She attended all the morning classes, stayed for lunch, and was the first to show up for the evening sessions. She loved the fitness class, enjoyed the class on Jewish law and decided to stay for a Tanya class. Only two of the classes that she attended were at the basic level. The rest were for seasoned students.
“It was a little hard for me,” she admitted as she filed her notes and handouts in the proper places in her loose-leaf binder. She wanted to have everything in order for the next week.
A flower looks different from a bud. It’s hardly the same creature. Blossoming can happen quickly, even unexpectedly. We all want it to happen. But buds have their own schedule. You can’t hurry them.
“People with Down syndrome reach a plateau,” it was said, “and do not progress after they are 6 years old.”
“People with Down syndrome reach a plateau,” it was later said, “and do not progress after they are 12.”
Now no one is talking about plateaus. But old ideas linger. And there is something wider and deeper going on.
There is no plateau. There is always a higher level, always more to achieve, always more that is achievable—an adventure and an accomplishment, right beyond the bend. Whether you have Down syndrome or not. Our soul is G‑dly and infinite, and gradually, we connect with it, becoming more and more.
We are all on our own personal timetables. Developmental delays means more is eventually coming. It needs time. We need prayer and trust in G‑d. Sometimes, development is delayed because the environment needs tweaking. Sometimes, it’s delayed because some buds just take longer to unfurl.
The bud is growing, but it’s covered. We don’t see the growth. It takes faith to believe there is progress, or the possibility of progress.
There is always a next stepWhen Chana was an infant, I hoped that by the time she was 18, 19 or 20, she would be where she is now, at nearly 25. Along the way, I had some doubts, some lowered expectations. Yet even in my strongest moments, I didn’t expect this flower, this treasure! My friend and my teacher, my nachas, my joy. So worth waiting for! May you go from strength to strength!
Thank G‑d.
Please, if you have special needs or if your children do—or even if you don’t or your children don’t—be patient. There is always the next step. Look for it, for your kids and for yourself. Delays are only delays. Some flowers need more time to open.
Be open to finding rare and unexpected beauty in your children, and in yourself as well. Maybe there are some mini-steps to build to get there. But there is always a way to reach a little further up. And then, a little further than that . . .
The only way to not reach it is to not try.
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