The Mothers of Kids With Down Syndrome Who Went Before Us and Fought for Our Kids
Sometimes the news isn’t as straightforward as it’s made to seem. Ellen Stumbo, The Mighty’s parenting editor, explains what to keep in mind if you see this topic or similar stories in your newsfeed. This is The Mighty Takeaway.
In his book, “Baby and Child Care,” published in 1946, American pediatrician, Benjamin Spock, suggested babies born with Down syndrome immediately be institutionalized. This notion was based on his belief that “If [the infant] merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.”
Spock was hardly alone. His views reflected how the medical community — and perhaps society at large — viewed people with Down syndrome — as if having the condition caused a lack in humanity.
Institutionalization, unfortunately, was commonplace. Few people challenged the medical model of disability. Much of the ableism and prejudice towards people with disabilities that exists today stems from beliefs like those presented by Spock not too long ago.
When Maria Hartman gave birth to a baby with Down syndrome in 1965, she was encouraged to send her newborn baby to an institution and try again. Rather than following her doctor’s advice, Hartman decided to take her baby home. Hartman was a social worker and had seen parents send their babies to institutions. Even before her son, John, was born, she made the decision that if she had a child with a disability, she would not give her baby up. “That’s what parents have to do, work for their child,” she said.
After the birth of her son, she co-founded a parent support group, where she encouraged new parents with messages of hope. She told them the grim prognosis given by the medical community was not accurate. She also fought for the rights of children like her son to have access to education alongside their siblings and their peers.
Hartman died April 14, 2019, but her legacy prevails.
Mary Wasserman gave birth to her son, Michael, in 1961. The doctor came into her hospital room and said, “It’s a Mongoloid. Put him in the state institution. He’ll never talk, probably won’t walk. He has no future.” He then turned and left. Wasserman had to ask a nurse whether she had a boy or girl since the doctor had referred to her son as “it.”
When Wasserman was in high school, she volunteered at the state institution. She told The Mighty she remembers the odor, the filth and the half-dressed infants and children left to lay in their cribs or beds. No one held them nor did they try to teach or play with them.
Wasserman knew instantly her son would be coming home. She wasn’t going to send him to an institution, even if it was common for parents to do so. She remembered parents dropping off their children with disabilities in the middle of the night. Driving away to never return.
For the mothers who kept their children, bringing their babies home meant raising them with no support. Wasserman said there were no books to read, no internet, no one to talk to except the pediatrician, who tried to be kind but had no advice. There were no regional centers or disability organizations.
Catherine Erickson was a neonatal intensive care nurse clinician for many years prior to her daughter’s birth. As part of that role, Erickson accompanied babies with disabilities — including Down syndrome — from the newborn nursery to state institutions.
“In the late 1970s and early 1980s, that was, unfortunately, the recommendation many parents were given,” she told The Mighty. It was only in the 1980s that it became more commonplace for families to be supported in their decision to take their babies home. This was directly related to changes in the medical model. Up until the 80s, many doctors advised parents not to perform life-saving surgery for their babies born with Down syndrome.
Erickson’s daughter, Maggie, was not born until 1991 when things had already begun to change. “With my clinical experience, I was oddly enough the most experienced newborn nurse in the room and made the diagnosis myself — and it was with great support from the obstetric nurse and obstetrician in attendance.” However, some of Erickson’s colleagues, who were older nurses, were not as supportive.
Fighting for Change at School
Today we’re all encouraged to bring our children home thanks to a courageous group of parents who decided to fight a system that considered their children as less than human. First, they fought for their kids to come home, then they fought for legislation so that their children had access to school. Although in 1975, President Gerald Ford signed into law the Education for All Handicapped Children Act, it didn’t mean that children with Down syndrome and other disabilities were successfully integrated into schools.
For Wasserman’s son, Michael, school was not a possibility until he was 8 years old. Before then, there were no options. There was no therapy or help specifically for children with Down syndrome. It was Wasserman who worked with Michael every day. No early intervention. No preschool. No kindergarten. Wasserman took Michael to daycare, but after a week, she was told he could no longer come back because the other mothers were not happy he was there. No daycare would take him. Wasserman had to hire private sitters so she could work.
When Michael finally was able to attend school, he was placed in a small special education school where children of all ages were grouped together. The teacher did not have an aide. The Wasserman’s moved to a larger city where Michael was in special education, but the school had trained teachers. “Even in a larger city, no therapy of any kind, no paras and no such thing as inclusion, no individualized education programs,” Wasserman said. Michael graduated in 1982. Inclusion did not come along until after Michael graduated.
“Inclusion was mostly started with children with other disabilities. In the city where we lived, Down syndrome did not come into the inclusion mix until mid- to late-80s.”
For Erickson’s daughter, Maggie, things seemed a little more promising. Erickson was familiar with early intervention and services due to her background. From birth to age 21, Maggie had generally great access to health care providers and services, a vibrant Down syndrome clinic, support group, school and community therapies. “All because of strong advocacy by the parents, educators and healthcare providers in the 1960s to 1980s,” Erickson said.
Regardless of those supports, education still proved to be a struggle. When Maggie was in third grade, there was resistance and lack of support for inclusion due to the culture of the school and experience of the teachers. There was no inclusion success to build on because nobody yet was doing it successfully. “There was a disappointing gap in meaningful inclusion and in educators believing my daughter and her peers with Down syndrome had the potential to learn,” she said.
Erickson decided to fight. She quit her full-time job and started independent consulting work so she could participate in support and change within the education system.
My daughter with Down syndrome was born in 2007 — 16 years after Erickson’s daughter and 46 years after Wasserman’s son. The day we left the hospital, as the nurse pushed me in a wheelchair to the car as per hospital protocol she said, “It makes me so happy to see parents take their babies with Down syndrome home. It wasn’t too long ago that we would have encouraged you to send her to an institution.”
I sometimes wonder, what would have happened if mothers like Hartman or Wasserman had not stood up against the beliefs of a culture that saw no value in our children. What if my child had been born, and as a mother dealing with the grief of a new diagnosis, being scared and unsure about our future, a doctor had told me she would never talk, walk or have any quality of life and that it was best to send her to an institution?
Instead, my 11-year-old makes my world brighter and richer and fuller. She comforts me when I am sick. She writes me love notes and draws me pictures. She tells me she loves me and that I am “the best mom in the world.” She makes me laugh out loud with her impersonations and she is so good at making people feel seen, valued and important –especially me.
And it is because of these families that yesterday I sat through a transition IEP meeting as we discussed my daughter going into middle school. While most of us still have to push for inclusion, I know that my daughter’s strengths and potential are recognized as we looked at the classes she can access in a mainstream classroom. But most importantly, she has a teacher who is willing to try.
These moms who came before me, they changed my child’s world for the better. They changed mine, too.
But we have not won yet. There are still more battles to fight. Now we are looking at adults with Down syndrome and seeing how few possibilities there are. Erickson said:
Despite many efforts, we as a community of parents and children still struggle with access to the right educational, recreational and health care programs/systems. Lifelong advocacy by families is ongoing and so needed. In particular, there is still much work to be done on employment access and support services. There are persistent and substantial barriers to the right healthcare for adults with disabilities. There are local and regional strengths and weaknesses, but many adult healthcare providers are just now caring for this population who grew up in families and communities rather than institutions.
Erickson is still fighting and now I get to join her — for my child and the generation that comes after her. If you parent a child with Down syndrome, your advocacy matters and strengthens the next generation, too.