February 7, 2008
Our family’s journey to make sure our special son was included
As soon as they put him on my belly, I knew. I looked at his eyes, and they were a bit puffy, as is normal after a regular delivery, but I knew. |
My husband, Mark, said he looked perfect, with all fingers and toes accounted for. I kept asking if he was all right; he was our second child, after all, and I knew he wasn't, because a mother knows.
Mark kept believing everything was OK until he followed the nurses down to the nursery, and they asked for pediatricians to come in. Nurses attended to our first born, Jason -- not doctors.
The pediatricians started looking closely at some of Michael's features, and phrases like "genetic testing" started to fly. Mark said his heart stopped in his throat then. But the doctors still weren't saying what exactly it was they were wondering about. They suspected something but did not want to say what. This is, after all, litigious Los Angeles.
It was 2 a.m. on Oct. 5, 1996, and all they wanted to say was, "We'll see after the genetic tests come back."
When would that be, we asked.
About two weeks, they said.
Then I got angry. Just what is it you suspect? You have a strong feeling it's something, don't you. It was not a question.
Yes, they did, they said. They had already contacted our pediatrician to order tests.
We finally got them to admit that they strongly suspected Down syndrome.
Those first 24 hours were devastating. We were overwhelmed and felt so terribly alone. By 3 a.m., it was finally just Mark and me together in a hospital room, crying, unable to stop, unable to comprehend.
What had happened to us? To this baby? To our world? We grieved for the baby we had hoped to have and feared for the future of the one who had arrived. We didn't know any better, and there was no one to talk to, no one at that point who wanted to talk to us about it.
Within the first 12 hours, our pediatrician had assembled two medical geneticists, a pediatric cardiologist and a neonatal nurse to confirm the initial suspicion, without the keratype results.
It pays to be living in a big city. Experts checked our baby from head to toe, and we found ourselves to be extremely lucky. Michael was a very healthy boy, with none of the heart or other gastrointestinal problems common in many children born with Down syndrome.
I wanted nothing more than to get home as quickly as possible. I needed my things, my bed, my 4-year-old son, Jason, my parents; I needed my normal life to surround me. We left the hospital less than 36 hours after Michael was born.
The bris: I wasn't ready for it, and yet, I think now that it saved me in that first week. It gave me a million details to focus on and allowed me to go out and pretend that my world had not fallen apart. What to serve, how to decorate, cleaning the house, who to call. A million tiny details that kept me sane.
And Mark, darling Mark, telling everyone that what we wanted most was the support to beat the odds. Tell us what the odds are, he said; Michael's going to beat them. Everyone cried.
That same week, our rabbi at Temple Israel of Hollywood, John Rosove, came to visit us with the head of the nursery school. They wanted us to know that they were already waiting for Michael with open arms, waiting to welcome him into the community, into the schools, that we as a family would always be a part of the temple community, including Michael.
It was our first feeling of acceptance, of still being a part of something. It would come to mean so much more.
Then everyone went away. We are by nature doers. We started accumulating information: organizations, Web sites, contacts, the material from a family member who had just found out her son was autistic. Books, articles, more contacts, support group information. Within weeks we were getting all the services we needed for Michael because he was in very good health and as he grew seemed to be exhibiting age-appropriate behavior.
At the same time, I just wanted to be left alone, to love my baby. I knew everything I needed to know about DS right then, and the anguish I experienced talking to or meeting anyone with a child with DS far exceeded the benefit I might reap.
Their children were not Michael. Their experiences were not mine. Their encouragement only made me feel that I needed to be encouraged, while I did not feel discouraged in my own day-to-day existence with Michael.
One woman said, "Put this information in a drawer and leave it there. Somewhere [along the way] ... , you may find yourself wanting something from that drawer. That is when you should approach it again."
Some important help for us came from a different part of the Jewish community: Jewish geography led us to an Orthodox woman who has a daughter with Down syndrome. Holly Magady, whose daughter, Danielle, is now 17, brought us a foot-high stack of research and notes and contact information. She led us to an inclusion program at UCLA for young children with varying disabilities and introduced us to a strong philosophy of full inclusion in the community and in education that guided us through the next few years.
Meetings with developmental pediatricians and regular pediatricians and therapists of every specialty turned into a schedule full of appointments. Thank goodness for our home videos: they show us rhyming and signing and climbing and encouraging and rolling and sitting in front of mirrors and computers, and always, always talking or singing to Michael. I can't remember a quiet minute in all that time, in the hope that he would copy us, answer us, some how respond to us.
And he did! He did! One thing that is certain: We reacted to Michael's accomplishments with all the same, if not greater, enthusiasm that we did to all of Jason's accomplishments. It was like having a first child all over again. Every achievement is amazing and worthy of a standing ovation.
Our immediate commitment to keep Michael within our community led us to Temple Israel's nursery school as well as other pre-preschool programs. The other kids didn't see any differences; they just saw Michael. And because it started that way, it stayed that way from nursery school through pre-K and into the temple's day school through kindergarten and first and second grades.
Jason introduced Michael to the school during Michael's first week in kindergarten one day during tefillah. We'd written a detailed letter to the parents, introducing our family.
At our request, the principal, Eileen Horowitz, explained in simple terms to everyone about Michael having Down syndrome, and then Jason spoke. He was just 8 years old. Horowitz invited the kids to ask any questions they'd like.
One child asked Jason, "What's it like to have Michael as a brother?"
Jason's answer: "Well, he stands in front of the TV sometimes when I'm watching, and he won't move when I tell him to."
Just like any other brother.
Another little boy who'd known Michael "forever" said to his mom, "What's the big deal? It's just Michael!"
Perfect. I got wonderful feedback from parents who loved having Michael at school.
We provided Michael with an aide and the teachers with as much support and information as we possibly could. But there were differences: Michael can't read like the other kids can. Math concepts are very hard for him. He wanted to play back on the nursery school yard, and he ran away every once in a while.
By the time he reached third grade, we brought in an inclusion specialist, but the curriculum became too complex; Michael's confidence began to take a hit. My heart was breaking as he began to act out; he had no other way to express his feelings of being left behind. I wanted nothing more than for him to feel a part of his community, but that was no longer happening.
In all the inspirational shows about kids with disabilities, this is the part that's left out. The hard part. The not-so-inspiring part. The part where you cry a lot and wonder, "why me?" and "why this sweet child?"
We began a long and painful part of the journey, first by moving to the public school system, which is required by law to provide for kids with special needs. We spent two years searching for the right place for Michael.
My heart broke a little more every day as I watched teachers try and fail to meet his needs; he ended up crying under desks at one school. I got calls almost every day from aides or school assistants asking for help or for me to pick him up as he melted down because of constant staff changes. It got to the point that I was afraid to answer the phone during the school day.
Michael waited half a year for a specifically recommended computer program; he ran away from PE classes that were too hard for him. He told me in the mornings that school was closed that day so he wouldn't have to go. He would have gone for almost six months without speech therapy, his most needed therapy, because there was no one on campus to provide it, and no one told me the therapist had left.
Despite extending myself and volunteering in classroom projects, I saw that teachers in the general education classes didn't really expect much of him, and teachers in the special education classes, who had very little support, were overwhelmed by their many students, each with different issues. God bless them all for trying.
It dawned on me that I have to give up my dream to have Michael always fully included to give him what he needs. Our ideal was not working for Michael. In fact, it was hurting him in every way. Socially and academically, our child lost two years of his life.
As any good teacher knows, you've got to step back and take your cues from your students. Michael was telling us what he needed. So we began the next phase of the journey, the search for the right place, not the ideal place.
Finally, we have done it. The Bridgeport School, a non-public school with funding from the public school system, is for children with special needs, part of The Help Group, and its wonderful teachers expect everything from him, and because they expect it, they're getting it.
The first four months were really hard; Michael had to adjust to his fourth school in two years. But the phone calls home stopped right away. The teachers knew what they were doing and how to handle "determined" kids.
Now, once again, Michael's confidence is coming back; his smile is coming back; he wants to go to school, and his sense of independence is growing.
Mine is, too, by the way. For the first time in a long time, I trust the people to whom I've entrusted my child; I see a light at the end of the tunnel.
I think some day my life might not be all about Michael's day, and Michael's homework, and Michael's behavior and might get back to being about me, as well, again. Selfish? Noninspirational? Maybe a little. But I gave up "me" 11 years ago in order to make life OK for Michael and Jason and Mark.
It's getting to be about time to get me back. But that's a story for another time.
Because of Michael's sense of well-being, we've also been able to bring him "home" again, back to our Temple Israel community for religious school on Sundays. As it turns out, he is probably the most spiritual member of our family: He loves to sing "Adon Olam," can't wait for his bar mitzvah, is empathetic to those in pain or need, loves the tzedakah projects at school. And his hugs are truly healing. Ask anyone. He's at religious school each week for three hours alone -- without an aide -- for the first time ever. The school, true to form and promise, welcomed him back with open arms. He loves it. He's with friends he's known since nursery school. He's in a place where he's comfortable, where everyone knows and loves him.
And what we've realized is that is the real feeling of inclusion and love and community we were seeking. Whether at his new school for children with special needs or at Temple Israel, Michael now feels confident again that he belongs where he is, enough so to take things on by himself.
What more could any mother want?
Rony Rosenbaum lives with her family in Los Feliz.