A 10th grader at a high school for Jewish girls, Danielle has a busy schedule: Practices for the Song & Dance Show, homework, dinner with friends and Shabbos afternoon get-togethers. There are some struggles with cliques and a few tears, but mostly joy. In other words, it's the life of a typical observant teenage girl. Except Danielle isn't typical at all. She was born with Down syndrome.
This is her story. It's also the story of her parents, Holly and Terry Magady, and their determination to fight for her. It's the story of open-minded and open-hearted principals and schools. It's the story of a community receptive to change. And it's a story of hope and the unbelievable depth of human love and potential. Aish.com met Holly in her home in Los Angeles.
Our first warning that something might be different was the Alpha Fetal Protein Test. We had a low score which could mean a unique chromosomal configuration. Based on this information, our ob/gyn sent us to a perinatologist who urged us quite vigorously to get an amniocentesis. It was clear to us that his agenda was to promote an abortion. We patiently explained that was out of the question. We would never do anything to endanger this pregnancy, which was a long time coming. Whatever the news, we wouldn't consider anything other than carrying this baby to full term.
This was clearly not the answer he was looking for. He showed us a chart with women's ages and their corresponding chance of having a child with Down syndrome. At the time I was 33 which would have put the chances at 1 in 800. With the low score on the AFP test, the chance was now 1 in 92. "Do you know what it would mean to raise a child like this?" he intoned. We ran out of his office.
We didn't discover that she actually has Down syndrome until a few days after she was born. I'm glad I didn't know beforehand. Prior to my daughter's birth, my own feelings towards children with Down syndrome had been very negative. If I knew I would have imagined the worst, as opposed to having an actual baby in your arms -- someone to hold and love and to smile back at you.
Danielle was taken to the NICU because of other physical ailments. The pediatrician came in on Shabbos and told us what they had discovered. We were so isolated. We couldn't call anyone for any help or comfort since it was Shabbos. I think it was the most painful day of my life. Friends dropped by to visit. No one knew what to say...
After Shabbos my husband called his rabbi and they both just cried and cried. Now, looking back, we feel like we were so mistaken, so wrong. Danielle's life is so upbeat; we wouldn't trade our life with her for anything in the world. Life is topsy-turvy and things aren't always as they seem. Situations that are so painful and difficult turn out to be the very things that give us the most joy. With enough time, if we're lucky enough, we see more of the whole picture. Realizing this gave us a lot of hope for any future challenges that may come.
Initially we were completely overwhelmed, but somehow we made it through. We made it through major surgery, through coping with the accompanying physical ailments, through mourning the loss of the person we thought we had and through replacing that with a different vision.
We asked her questions that seem so absurd to us now, like, "Do you take him on vacations with you?"
While I'm more emotional, my husband went right into information mode. He called everyone. He called a woman in the community who had a child with Down syndrome. "The first thing I'm going to tell you is don't let anyone say anything bad about Down's syndrome. The second thing is I'm on my way." She was a lifesaver. We asked her questions that seem so absurd to us now, like, "Do you take him on vacations with you?"
I remember just being in survival mode. We had a baby-naming at shul. We knew that everyone would be looking at us and taking their lead from us. We felt a tremendous responsibility to put on a positive face.
After a year and a half of many therapies and surgeries, she entered a special program run by UCLA. We met other families through this excellent program and made life-long friends. It was small, nurturing and we all felt understood, loved and protected. The program ended when Danielle was three and it was like a push off a cliff. What were we going to do now?
Once again, the Almighty has a plan. At this time, there was a TV show called "Life Goes On" whose protagonist was a young man with Down syndrome. It was life-affirming, the ultimate in inclusion. So my husband suggested to his brother, a TV critic for the local paper, that he write a piece on this show. In the article he mentioned Andrea Friedman, another cast member who has Down's syndrome, as well as his niece, Danielle. Andrea's father called to thank my brother-in-law and offered to meet with us. He and his wife told us their daughter's story. They were the real pioneers of inclusion. It just takes one person to say "I did it" to open the doors for others. They hired Sharon, a recent college graduate, to be their aide. She became an inclusion advocate and has the talent, sensitivity and experience to make it happen.
In the meantime we prepared to convince the rabbi of a small local day school to enroll Danielle in a regular classroom with other girls her age. So much was at stake. We were so nervous and so afraid of disappointment. But he could not have been more welcoming.
"I was just talking to our administrator. We would like to have some children with Down syndrome at our school." Not a grudging ‘all right' but a suggestion that we were doing something for them!
It was scary; we were treading new ground. The other parents were concerned -- would Danielle take up a disproportionate amount of the teacher's time and take away from other children? Will the school get some kind of negative label? I understood their concerns. Hard to believe, but we were one of the first to attempt to do this in the Jewish day school system. Sharon really helped integrate Danielle into the school throughout her years there. We couldn't have done it without her. There were so many issues to deal with: psychological, emotional, social.
If the girls in the class were having a problem with Danielle, Sharon would not allow her to feel sorry for herself or whine about the other girls. In fact she would always maintain that it was Danielle's behavior that was causing this reaction and that it was Danielle's responsibility to change. (This is really hard for all parents to hear and accept!) Danielle was forced to grow and mature. Carol would show the teachers how to facilitate a session where the girls could tell Danielle directly what was bothering them.
Not coddling Danielle made a big difference.
Sharon also trained Danielle's one-on-ones. The aides have to stay back. We didn't want them to get between Danielle and her classmates because that would defeat the whole purpose of inclusion. The aide had to know when to participate and when to blend into the background.
Frequently children with Down syndrome, like other people, seek their comfort zone. They need just a little tension to keep them learning and growing. Danielle's teachers and aides had to learn not let her coast, not to underestimate her abilities, and to resist the temptation to go easy on her. It took a few years for Danielle to be integrated socially but it eventually happened. It couldn't be forced. And I think Sharon's insistence on not coddling Danielle made a big difference.
Although Danielle certainly needs a modified program in a few areas, she basically stayed with the class and we encouraged the staff to stay focused on the similarities not the differences.
Then came the end of elementary school and a new challenge. Once again, we were leaving the cocoon and we were nervous. What if she didn't have the same high school experience? Or, even worse, what if the Bais Yaakov high school we wanted her to go to wouldn't accept her?
We were dumbfounded by the welcoming response. The principal told us that he believed that the way we treat our sisters and brothers with disabilities needs to be one of the most important concerns of this generation.
High school is more challenging; it's a bigger school and most of the girls haven't grown up with her and don't understand her ways. But slowly, slowly, they are opening up. Danielle is a social butterfly and loves to be with people. She doesn't always read social cues accurately, but the girls are kind and she is learning about people's boundaries.
This year she is in the gymnastics portion of the school performance; she got in on her own merit and is having the time of her life. Hopefully when people see her up there it will open them up to the possibilities. There's the same variety of talent among girls with Down syndrome as among other girls.
Every day I'm thrilled with each step of Danielle's progress and integration. My husband likes to think big. He has a vision for the future of communities -- whether they be in Jerusalem, Los Angeles, or Brooklyn -- where people with Down syndrome are fully included. They'll have their own homes, they'll be married, they'll have jobs, they'll have guests for Shabbos. They'll be a part of our community with whatever degree of support they need. They'll make their contributions, they'll have their anxieties, and feelings, and dreams. Just like everybody else.
No one should have to choose a particular school because it's the only one with an inclusion program. Each school should make a place for these individuals. The only way that vision will be realized is through more inclusion. The knowledge and comfort level will only increase as more children are included. Every Jewish child has the right to be in a Jewish school.