The Down’s Spectrum

Mar 20, 2014 @ 10:59am

Cool Ad Watch

by Katie Zavadski

Ahead of World Down Syndrome Day tomorrow, an Italian advocacy group releases this PSA:

Through 15 people with Down syndrome from around Europe, the video, titled “Dear Future Mom,” outlines that mothers can expect the same things all mothers expect: a child who hugs, runs, helps, works and faces challenges. “Sometimes it will be difficult. Very difficult. Almost impossible,” the people say. “But isn’t it like that for all mothers?”

Gregory Jaquet appreciates the approach:

No lies, nothing hidden, they give parents a objective and touching perspective.

Erin Gloria Ryan can somewhat relate to the struggles that mothers face:

The sad subtext of that message is that in the western world, women who find out they are pregnant with a child with Down Syndrome choose abortion around 90% of the time, often because they fear their child won’t live a “good life.” I’ve written at length about how the 9-out-of-10 statistic is tough for me, a vocally pro-choice woman who grew up with a very close relative with Down Syndrome, to swallow. And I’d never tell other women how they must or must not form their families. But, as a pro-choice woman, I’d want prospective mothers to base their decisions around whether or not to abort a pregnancy to rely on facts rather than fear, and ads like this one help shine light on the reality of living with or raising a child with Down Syndrome.

Mar 21, 2014 @ 11:48am

The Down’s Spectrum

by Chris Bodenner

A reader writes:

The PSA you posted highlights how people with mild cases of Down Syndrome can flourish. The degree of impairment due to Down’s, however, is a spectrum. I have a close relative with Down’s who is severely affected. She learned to speak only for a year or two, then it was all forgotten. She is now in her mid-thirties and has not once slept through the night. In fact, as she has gotten older, she has developed Parkinson’s disease. She requires a cocktail of medications that sometimes leads to complete sleep deprivation.

Her kind and loving parents have rejected suggestions to institutionalize her throughout her life and given her the best life they possible could. But they are now elderly, and are her primary caregivers, taking turns spending all night awake with her. I know they do not have an ounce of regret for the choice they made to keep their child, but I would not judge other families who lack their strength.

Mar 24, 2014 @ 5:40pm

Ctd …

A reader elaborates on the themes broached by the earlier one:

I have seen things like that video promoting the upside of a child with Down Syndrome before, but a mildly affected child isn’t the reality for most parents. Between 3 to 12% of children with Down’s are profoundly mentally handicapped and unable to do much without assistance. Another 25% are severely afflicted and 55% are moderately so. Only about 13% are mildly impaired, and they are the ones who have the best shot at some degree of independence as adults. But people with Down’s are never truly independent, and by middle age evidence of memory loss and reduced cognitive function begins to set in as they are prone to early Alzheimer’s, in addition to other physical issues.

My 62-year-old cousin has Down Syndrome. While he has never been independent, he has been able to live in group homes at different points of his life and has held jobs through various programs for the mentally disabled. But now he has behavior issues and is showing signs of dementia. His older siblings don’t want the responsibility of his care, so my 88-year-old uncle is still his sole caregiver. I know his siblings well enough to know that not one of them will step up should my uncle be unable to care for him anymore, and my uncle, while healthy, isn’t going to live forever.  I wonder what will happen to my cousin.

Going ahead with a pregnancy when you know the baby is going to need life-long care is not just a decision you make for yourself and the child, but it obligates other siblings and family members as well. That’s something that potential parents should take into consideration.

Another shares some raw honesty:

I’ve been reading your thread on Down Syndrome with interest. My 17-year old son does not have Down’s, but he does have multiple disabilities including developmental delay, cerebral palsy and visual impairments, due to complications at birth. He is a happy, joyful young man and my husband and I love him to bits and have done our best to ensure he has a loving and happy life.

However, it is an exhausting and thankless existence, resulting in no respite, decreased career prospects and pay (due to being only available for part-time work). We fear about our son and our future when we get older. Knowing what I know now about raising a severely disabled child, in my heart of hearts I know if I was given the option today of raising such a child or terminating our pregnancy, I would choose abortion.

Asked for the source of her statistics, the first reader follows up:

This pdf is where I found the percentages. They were not easy to ferret out and maybe you can find better stats somewhere else. Most of the medical stuff I found seemed reluctant to lay out hard numbers and kept things very general. It reminded me of the difficulty of finding information on outcomes for extremely premature infants, which is also not as rosy as it’s generally painted to be. I don’t remember if I mentioned it, but there is now evidence that between 10 and 15% of Down’s children are also autistic, and it’s not particularly hard to find articles listing the numerous health issues of Down’s adults or the fact they seem to age prematurely (which probably is why they experience dementia symptoms at such a young age).

I never spent much time with my cousin as a child. He was a teen and his behavior with girls in particular was … inappropriate. So my siblings I weren’t around him much and usually supervised when we were.

I admire my uncle. He has been a good father. His step-children and his grandchildren adore him. But, according to my mother who recently visited him, his quality of life is suffering a bit now. He has vision issues himself and the stress of dealing with my cousin’s health issues on top of his own takes a toll. He is fortunate to have one step-daughter who helps out, but she is unable to take her brother’s care on completely – mostly because of his behavior issues. An extended network of friends and a girlfriend help him a bit as well, but most of the work falls on him. My cousin is quite set in his routine and is violently opposed to being care for by other than his dad.

Update from a reader:

When I initially read the words of the reader with the 62-year-old cousin with Down Syndrome whose 88-year-old father still cares for him, I was blind with rage. The view of this reader, supported by his EPA (?!) PDF is extremely antiquated.

But then I looked again at the age of the people in the story. The cousin was born in 1952. The father and mother who raised him did not choose to institutionalize their child, as was the norm at that time. That was very brave. Even so, back then, this child was most certainly not educated with his peers and the technologies did not exist for elevating him to his full potential. As a result, this reader (and many others of a generation too) has formed an impression of who and what Down Syndrome is.

And for the record, “inappropriate behavior with girls” is not a trait of DS. It occurs to me that this family did not have the ability or resources at that time to educate and/or train this child. His dependence today on his father as his sole caregiver is probably another result of inadequate resources and support. However, at that time the only other option was to lock him up. There was no good choice for this father and mother.

That is the bad news.

The good news is that nowadays in our society we educate all of our children. We have the skill and technology to teach EVERYONE, even the mentally disabled. That is why we now have these excellent stories of people with Down Syndrome and other handicaps living happy productive lives in our society. Even better, because of this, we all have the opportunity to interact with people with different abilities. We don’t need to be afraid of them and we don’t need to let the stories of years gone by make us afraid to bring our babies into the world.

I have a 9-year-old son with Down Syndrome. I learned of his disorder before he was born. I was very afraid of the future, mostly because I had never been friends with or interacted with anyone with Down Syndrome. I had always averted my eyes and avoided contact on the very rare occasions in which I encountered someone with DS. I was born in the early ’60s. At that time babies with DS and other disorders were still being institutionalized and they were rarely seen in daily life. I never considered terminating my pregnancy though; I knew my fear was irrational. I wanted a child to raise and a sibling for my older son. I had a family and community around me to support my decision and to be enchanted by my boy.

The reader’s story is a tragic one. But it is not a story of the bad news of Down Syndrome. It is a story of societal exclusion of the mentally disabled. There are similar stories out there of aging people who were institutionalized 50 years ago for what we consider to be manageable behavioral problems today. I have a friend whose 60-year-old cousin was institutionalized at age 5 for eating dirt. He is still there, forgotten by most of his family. I hope that the reader, the cousin, the father and the rest of this family will find comfort and resolution somehow.

Parents to be: Please don’t let this story shadow the outlook for your child. We don’t live in that world any more. Your baby will be as beautiful and lovable as any other, and full of potential. Being a parent will be the ride of your life no matter what the diagnosis is. You can’t predict what it will bring. Nobody can.

Mar 25, 2014 @ 4:00pm

Ctd …

The discussion thread deepens:

Yes, there is a spectrum. My 16-year-old son, James, has Down’s. We knew that before he was born. We also knew that there was a problem with his esophagus. As it turned out, he was born with no esophagus at all. After several months in the NICU, he was operated on and the surgeons created an esophagus. We have to be very careful about what he eats. Happily, he is devoted to yogurt and hot cereals, which do not get stuck.

He is also very developmentally delayed and has some autistic tendencies. He has a few words but knows how to communicate his needs. He is very social and his receptive language is very good. He is the happiest person I know.

He has two older siblings, now 20 and 23. My wife and I recently talked to them about the decision that we made, including for them, when we decided to have James. They acknowledged that at some point they will be his care givers, at least to some extent. But, when we started to essentially apologize to them, they looked at us like we were crazy. “What are you talking about? He’s our brother.”

It has been hard, but none of us regret the decision we made. The commenters who are looking in at families like ours from the outside should think twice, because they have not experienced firsthand the joys that come with the difficulties.

Another mother of a disabled son shares her story:

Parental care of a medically and developmentally disabled child is sufficiently stressful that it has been found to inflict damage on the parents’ own DNA. This leaves the main caregiver (usually the mother) vulnerable to lethal diseases, shortening her genetically determined lifespan by an average of 13 years.

I am the mother of one such child, now in his thirties, whom my husband and I care for at home. Our son functions at a two-year-old level. He requires frequent surgery (over 20 major operations since his premature birth). He has been diagnosed with autism, cerebral palsy, severe vision loss, hydrocephalus, and retardation. He has had to endure horrible pain throughout his life. Most recently, he has become oxygen dependent again, much as he was following his preterm birth.

I am in my mid-sixties and nearing the end of my “three-year life expectancy” following a cancer diagnosis. Both literally and figuratively, we are asking parents to sacrifice their lives when abortion is banned in afflicted pregnancies or when sick, disabled newborns are medically “rescued” and handed over to their family for life-long care.

Another reader:

My brother, born in 1966, had Down Syndrome and was profoundly disabled, so he was in that 3% to 12% of children with Down’s who are unable to be without assistance. When he was born, his stomach was not attached to his intestines, and his heart had a “hole” in it. My parents were counseled to leave him at the hospital after his birth. They did not, and they chose surgery for his stomach, but not for his heart. When he died at age 17 months, he had never even lifted his head himself. He had not spoken, or crawled. He did not recognize his name, or respond much to others.

I’ve often wondered how I would be different if he had lived; I was raised as an only child. I do know, though, that were he still alive, and as disabled, I would be responsible for his care, as my parents are both deceased. I certainly wouldn’t have been able to care for him at home, and I truly wonder what kind of life he would have had.

After my brother died, my parents didn’t talk much about him – it was too painful, I assume – but my dad did tell me once that a friend of his was so moved that he, the friend, donated a substantial sum to research that led to amniocentesis. So maybe, because of my brother’s life, other parents can have vital information about their own children. Had abortion been an option, I have no idea what my parents would have done, but when I was pregnant, my father was adamant that I be tested. And my perfectly healthy son is named for my brother.

Mar 27, 2014 @ 9:04am

Ctd …

The thread grows and grows:

A close relative of mine has a three-year-old girl with Down’s, and she is an angel. Whatever the spectrum is, she is on the high-functioning end. This year she started attending preschool, and the hope was to mainstream her eventually. All that is on hold now because she was just diagnosed with leukemia.

Seeing her family cope with this situation is quite difficult, but it is not uncommon. Even though this little girl was mentally high-functioning, she is more susceptible to physical problems because of her extra chromosome. Another reader mentioned a hole in the heart, which is another common health issue for Down’s kids. A quick Google search will show you just how many physical problems are more likely with Down’s. It’s daunting.

Some good news: prior to the ACA, Down’s was a pre-existing condition, subject to all the limitations that went along with that. Now my family is at least not worried about hitting a lifetime dollar limit on her care. (She is receiving excellent care and responding well to chemo.) The thing about her Down’s is that it is tough, but it is manageable and a well-known, well-researched condition. Her family has immense support, and people truly do understand Down’s in a way they did not used to. This little girl requires far less care than, for example, my cousin who has hydrocephalus, among other things. He is 22 years old and over six feet tall, but he is cognitively two years old. He requires constant care and has no hope of ever functioning on a higher level. The mother of the girl with Down’s knew with a simple blood test that her fetus was at a higher risk for Down’s. My aunt did not know until after her son was born that he would be so disabled.

Because of my relationship with these two families, I do not understand choosing to terminate a pregnancy because of a blood test that says there is an extra chromosome in the fetus. That bit of information simply does not tell you much. Your child could have far more severe problems that don’t show up until well after birth. Getting pregnant at all is a huge risk and a commitment to another person for the rest of your and their life.

I am pro-choice, and I firmly believe the decision to end a pregnancy is too personal to be handled by the government or anyone but the person in that situation. I am not trying to pass judgment on someone who does choose to end a pregnancy because of the blood test; I just have trouble understanding it.

Another is on the same page:

I recently gave birth to my first child in November. I am part of a group of online mothers, and one mother delivered a premature baby girl who has Down Syndrome. She is an adorable baby and very lucky that she has such a caring mother. Her mother has recently become a very vocal advocate for banning abortion (in cases of Down’s) and even prenatal testing! I’ve kept my mouth shut, but it’s been hard. I do not know how someone, who is so intimately aware of the struggles that come from having a child with special needs, feels they can dictate other families decisions in this way. Then again, that’s the issue with the whole abortion debate. But special needs seems to be a special case, not only because of the suffering a child or adult with disabilities may endure, but because of the impact it will have on any other children or family members.

I should add that I have a sister-in-law with Down’s. She is at the higher end of the spectrum but could never live alone. She is very sweet and loving and caring. But she’s a child in a woman’s body. I’ve often asked my husband what would happen if her parent (my father-in-law and my husband’s step mother) passed away. Where would his sister go? He assures me that his step-mother has a large family who would care for her. But I really worry that there isn’t a plan. And where does that leave us?


Your reader who shared anecdotes about her 62-year-old cousin with Down syndrome is exactly why the PSA video you highlighted on World Down Syndrome Day is important and necessary. It’s important and necessary because it articulates a point of view that is often drowned out by messaging consistent with your reader’s mindset, i.e., your life will be horrible if you have a child with Down syndrome. It’s scary enough for parents who get a diagnosis of Down syndrome – pre or postnatal. Those parents will immediately seek out information, and often times the information they will find is overly pessimistic, horribly one-sided and often antiquated.

Hence, it is nice to see the other side of the story – the side that shows that while there will inevitably be challenges, your child will be more alike than different from your other children and will bring immense joy to your life. I know from experience that that is a dark and scary time and you naturally focus on the real or perceived negatives of your situation. I wish I had seen that video during those first few weeks for a brief respite from the doom and gloom. I have three sons, one of whom happens to have Down syndrome. I have a ton to be thankful for, both professionally and personally, but having and raising my son with Down syndrome is the best thing that has ever happened to me. I really could not care less if someone believes that is an overly optimistic viewpoint. It’s the truth.

Another reader sends another video, embedded above:

We found out our 12-year-old daughter Sophie had DS in our seventh month and just couldn’t go through with terminating the pregnancy.  When you see the video, you’ll know we made the right choice.

One more:

Reading this thread just about brought me to tears; it’s just so moving.  I’m so grateful for your site and the unparalleled reader feedback that makes it so special.