"We Have Three Children with Down Syndrome, a Child with Autism, and a Happy Life"

Anyone who sees the Maayan family when they walk down the street, or meets them in a café or on one of their trips in Israel and abroad, usually raises an eyebrow. It's hard to remain indifferent to their interesting composition: parents Shiri and Ziv, with two other adults, Sheri and Yam, who have Down syndrome, along with 16-year-old twins, Amit, 14, Omri, 11, who is diagnosed with high-functioning autism, and Uzi, 5, whose sweet face reveals she is a so-called 'special child', meaning, with Down syndrome.

The family is not affected by the looks they receive. Perhaps because they are used to them, or maybe because they believe this is the way to expose the public to this special population, thereby helping the world become a better, more tolerant, and much more inclusive place.

"I believe that special people make us all better," Shiri clarifies. "If we pay attention and look at the special people around us, we will always see that there are many people doing good things, helping them, and volunteering with them. This is actually what makes our world a better place.

"Personally, I was moved when, at the club where Sheri and Yam are, they once organized a series of meetings with prisoners. The prisoners met Sheri, Yam, and their friends, and as a result, connections were formed, and they even regularly saved money in the canteen to buy them sweets and surprises. This precisely strengthens my claim that the world becomes better thanks to special people. That's why I really want them to be around me and live with me at home."

Adopting the Siblings

The beginning of this amazing family was on a kibbutz, a little over 40 years ago. "I grew up as a kibbutz child," Shiri recalls, "and when I was three, my father was killed in an accident. My sister was only a year then, and since then we grew up with Mom."

When Shiri was seven, her mother surprised her by sharing that a new child would be joining their family: Adi. "Adi had a rare syndrome," Shiri explains. "Mom decided she wanted to expand the family, and since she was told that in this situation where she had two biological daughters, she could only adopt children with special needs, she decided to choose this path. As a result of Adi joining our family, Mom had to find a suitable framework for her, so we left the kibbutz.

"It was not an easy period, having to adapt to the new family composition and also to get used to a different place of residence. But shortly after, another surprise awaited us because Mom announced that soon another child with special needs would join our family – Sheri, and a few years later came Yam. They both joined the family when they were just a month old, and both have Down syndrome."

What led your mother to adopt three special children?

"At the time, I didn't even ask this question because Mom treated it as if it was a given. Today I understand how exceptional and rare her behavior was. Especially since our financial situation at the time was not excellent, and Mom had to single-handedly support a family of five children, two of whom had special needs. I have no explanation for what drew her to it, but she was the best nurturing maternal figure for my adopted siblings that could be. My sister and I also loved them very much and considered them our siblings in every way."

But the idyll did not last long. When Shiri turned 23, her mother passed away from cancer, and a few months later, Adi, who was 16 then, also passed away. "At that time, I worked in the southern region," Shiri says, "but about a month before Mom passed away, I already realized her condition was deteriorating, and I returned home to be with her. During those days, I served as a kind of maternal figure for Sheri and Yam, taking care of what they needed. After Mom passed away, I realized there were now two possibilities: either to place Sheri and Yam in an institution where they would live their entire lives, or that I take on raising and caring for them. I decided to choose the latter and adopt my two siblings."

You mean to say that as a 23-year-old young woman, you adopted two children with Down syndrome?

"Yes, Sheri was 10 at the time, and Yam was 7, and I simply could not accept that they would grow up alone in an institution. So, I took on the children's upbringing and received guardianship over them. Obviously, it wasn't easily given to me. At first, I had to prove myself, but gradually, they allowed me to be a 'foster family,' and I took on the responsibility, operating like a little family. Gradually, our financial situation also stabilized, enabling me to hire a foreign worker to provide the necessary assistance while I continued my work and studies."

Being Like a Mother

Being responsible for raising two children is not an easy task at all, especially when it's a young woman, and even more so when these are children with Down syndrome. "Sheri and Yam had a very hard time with Mom's passing," Shiri recalls those days. "I had to accompany them and constantly think about what to do to help them. Sheri understood the catastrophe well, and during those days, I took her to the school psychologist, who guided me on how to explain the concept of death, using familiar animals that passed away. Yam was younger than Sheri and featured lower functioning, so he understood in his way what happened, and for example, he adopted the habit of taking off my shoes every time I entered the house, so that I wouldn't leave."

Shiri took full responsibility for her brother's educational matters, which also demanded high attention. "Since they are special children, I had to maintain continuous contact with the teachers and the staff," she explains. "We had study plans, evaluations, and many joint conversations, in all of which I took part. About two years after Mom passed away, I came to the conclusion that Yam's educational system was no longer suitable for him, so I really fought to take him out of there and find a more appropriate school. That was the stage where I started to realize I really functioned like a mom, one who understands that not everything given to her child is the best option, and is willing to fight and make efforts to find something better. There was also a transition for Sheri to another school, where I was able to find her a special, groundbreaking class of seven children with Down syndrome. Along the way, there were many other crucial decisions regarding my siblings' care that I had to consider, both for education and health."

Did they treat you as a mom?

"They felt connected to me like a mom, but I constantly emphasized to them: 'I'm not a mom.' Sheri would insist: 'You're like a mom,' but I explained to her that I'm not, and it was important to me because I didn't want things to be misunderstood. At the same time, they are clearly still an integral part of our family."

And where did you find time to take care of yourself during this endless work?

"The truth is, when I decided to take on this demanding task, I heard very difficult reactions around me. Friends called me 'crazy,' and warned me that no one would want to marry me in the end. But apparently, I inherited from my mother the good eye and the desire to do what I felt was right. I felt most intensely that if I didn't raise Sheri and Yam with me, I wouldn't be able to continue my life with that knowledge, and I knew this was my duty at that stage of my life. I believed that in the end, I would find someone who would want to marry me, and if he would be frightened by the fact that I was raising special children, we probably weren't meant to be. Because I was honestly looking for someone with a similar perspective to mine."

A Supportive and Loving Environment

Eight years after Shiri became orphaned from her mother, she met Ziv, and very quickly they discovered they understood and spoke almost a common language. "Ziv accepted Sheri and Yam amazingly, as if it was a given situation," she notes, "I told him about them at a very early stage of our acquaintance, and he wasn't frightened at all. I remember one day I complained that Yam wanted to attend an event, and I really had no desire to accompany him. Ziv didn't think twice before he offered to accompany him, and he really took Yam by car and didn't panic even when Yam threw up along the way. Even then, I realized I found the one meant for me."

Did Ziv have prior familiarity with the special education field?

"Not at all. He actually comes from the most normative family, nothing unusual or out of the ordinary, but he connected with Sheri and Yam very much and genuinely loved them. However, when I told him during the wedding period that I had a dream to adopt a child with Down syndrome someday, he tried to moderate me. I told him: 'You'll see, you'll also have this dream eventually..' and Ziv told me: 'Relax.'"

Today, nearly 18 years later, Shiri's dream has come true, as did her prediction about Ziv's desire. "Today we are parents to twins, Adi and Noa, with Adi named after my adopted sister Adi who passed away; then there's Amit, and our youngest son, Omri. Omri is now 11 years old, and when he was about 6 and a half, he was diagnosed on the autism spectrum, with high functioning. At that time, we were already in the process of requesting adoption of a baby with Down syndrome, and so it turned out that we received into our family Uzi, a small and sweet baby with Down syndrome, just as we were adjusting to having a child with autism. It was really challenging, mainly bureaucratically, but we never even considered giving up our adoption dream."

And what about Sheri and Yam, do they live in your home?

"Sheri is now 34, and Yam is 31. Each of them was with us until the age of 22, and then they moved to live in a special residential arrangement on Kibbutz Beit Alfa. It's a wonderful place where 16 residents live, most of whom have Down syndrome. They have activities and a club, they go out to work in the open market and lead independent lives as much as possible, but with supervision and accompaniment. They come to us for weekends every two weeks and during vacations. But generally, they prefer to be in the residential arrangement because it's good for them there, and we are glad and bless it."

What about raising Uzi? Surely she requires more from you than the other children...

"That's true. We received Uzi when she was three weeks old, and today she is almost five, but we have to watch over her as we would a two-year-old child. In general, her development is very slow, and every stage is prolonged, but eventually, it arrives, and that is very encouraging and makes us happy. Uzi is integrated into a regular kindergarten and really loves going to kindergarten, but of course, there is a big gap between her and the other children, and there is also a need to take her for treatments in the afternoon.

Uzi Maayan

"By the way," adds Shiri, "when people ask me where our difficulty lies, I reply that our only difficulty is the bureaucracy. Because as parents of two children with special needs, we find ourselves filling out forms all day and trying to get what we are entitled to from the state, but while autistic individuals have strong lobby groups fighting for them in the Knesset and passing laws to help them, Down syndrome does not have enough representation, and this requires us to be constantly dealing with requests for renewal of treatment approvals and pursuing our rights."

Nevertheless, Shiri emphasizes that they make sure not to give up on anything and lead their lives with the understanding that you can fulfill dreams even with a special family. "For example, a few months ago, we went on a month's trip abroad, we also travel a lot in Israel and find many ways to enjoy ourselves."

And how do people react when they see you?

"Usually, people respond very patiently and sympathetically. I only remember one case when I arrived with Yam to receive a gas mask during the hysteria before one of the wars. I stood in the long line and was given priority because I came with a person with a disability. As we advanced to the front of the line, someone behind me yelled: 'Do you think your disabled person is more important than my soldier son? On what basis are you going ahead?' It really pierced my heart. But apart from that shocking response, no other difficult reaction comes to mind. I think hard reactions were mainly in the past, and in recent years people have progressed and are much more accepting of differences."

And how do your biological children regard the 'special uncles' and sister?

"They naturally grew up with Sheri and Yam, they don't know any other life and regard them as part of the family. As for Uzi – she is the toy of the house, the gift for all of us. She is truly so sweet that it's indescribable, and we are always surrounding her with great love and connection."

And honestly, do you sometimes think about what the future holds for you?

"I don't just think about it; I also openly talk about it. My children always know that if, heaven forbid, anything happens to me or Ziv, they will be responsible for Uzi; I'm not worried about it, and it's even comforting. It also reminds me that when my mom adopted my special siblings, she had a good friend who asked her: 'How can you do such a thing? In the end, the burden will fall on your daughters.' In theory, that's exactly what happened, and indeed the 'burden' fell on me, but today I know for sure that Sheri and Yam were the great salvation of my life. It's not just that I gave them, but they certainly also gave me. Because if they weren't with me when Mom passed away, I would have completely collapsed. Even today, I'm not afraid that there will come a day when my biological children will take care of Uzi. If that happens, it will be as good for them as it is for her, and meanwhile, I'm trying to build her a supportive and loving environment that will always be there for her."