Monthly Archives: June 2009

Having a Child with Down Syndrome Part V: Changing Eyes

Copyright © 2009 Steve Hawley, All rights reserved.

Familiarity, it is said, breeds contempt, but I don’t think this is the case at all. Before Alice, I had limited exposure and a fair amount of ignorance with Down syndrome. I knew the outward physical signs and really not much more. Like many people, the differences stood out and looked odd and I had a fair amount of fear.

When Alice was born, I read up on all the common phenotypes (and more), so I would know what I was seeing with my daughter. Low muscle tone? Check. Epicanthic folds? Check. Nucal fold? Check. Brushfield spots? Nope. The list goes on and on.

Over time, like I mentioned in Part I, I’ve gotten good at spotting people with Down syndrome, and the oddest thing has happened over the past six years. Instead of regarding with curiosity, I see people with a sense of warmth and fondness. Alice has shown us so much love that we look for that in other families as well. It also makes me think of two things that happened the first year that we went to the Massachusetts Down Syndrome Congress’ annual convention. At lunch, we sat at a table with complete strangers, including a young woman named Tracey Newhart. Tracey had recently been the subject of a number of news stories because her high school career spanned the transition to Massachusetts’ MCAS exam as a requirement. In brief, she was denied her diploma and had her acceptance to Johnson and Wales rescinded. Awful. Tracey was quiet and a little nervous. I had just finished feeding Alice, who had just turned 1, and I asked if Tracey wanted to hold her. She lit up like a Christmas tree and it was terrific to she the joy on her face. Tracey holds a special place in my heart.

Later that day between sessions, Alice was fussing and a young man named Raphael came up and picked Alice up and soothed her before putting her back. He had violated typical social boundaries, but I didn’t feel he was a threat and he was terrific.

Yesterday, we went to our local DS resource group’s annual picnic – our 6th, and in the first we were still mourning, but now I look forward to seeing the other families, but most importantly to see the other kids. Now, instead of seeing a collection of phenotypes, I see some of the most beautiful kids on the planet. I see kids with differences, yes, but mostly I see the smiles and the laughter and the other emotions.

Having a Child with Down Syndrome Part IV: MacGyver and Early Intervention

Copyright © 2009 Steve Hawley, All rights reserved.

We’re truly lucky in that we are on the right side of the curve for taking care of and raising a child with Down syndrome. John Langdon Down had portraits taken of the people with Down syndrome that he helped care for. I wish I could find a link to the portraits – they are quite stunning, and Down discovered something that was lost in the rise of eugenics: if you treat people with Down syndrome like, well, people instead of locking them up in asylums/institutions, then they thrive and live much longer lives.

Yet eugenics became the in mechanism of social engineering, thanks in no small part to Alexander Graham Bell ( Ironically, eugenics does little or nothing to change the birth rate for babies with Down syndrome, since Trisomy 21 is a spontaneous mutation in most cases. So what does a eugenicist society do with these babies? It sends them to institutions for life where they are ignored and live short, isolated, lives.

In the 1960’s and 1970’s this changed – Early Intervention is a program that provides intensive therapies for children with disabilities from age 0-3. For the most part, the justification for doing this is pure economics: if you invest the funds up front, then there lifetime cost of these people to the state is less, and in the case of Down syndrome it is likely to be significantly so.

EI is also different, because the model of EI is that services are delivered in the home for the child and for the parents. It’s as much about educating the parents as it is for helping the child. Alice saw a huge team – initially it was a physical therapist and a case coordinator who also did occupational therapies. When Alice started talking fairly early, the coordinator pushed for a speech therapist too. Alice was receiving therapies daily, and sometimes multiple times per day.

The therapists saw us as resources as well. As we learned about the goals of their actions, E and I started tweaking the things that they wanted to make them better. Because of low muscle tone, it was hard for Alice to reach up to midline, an early baby milestone. We were instructed to roll up a towel and use the rolled up section to raise her shoulders and help turn in her legs. After rolling and rerolling the towel a dozen times a day, we took nylon stockings, filled them with rice, tied them off and put them in long tube socks and tied those off. That was our first MacGyver adaptation. I made blocks that were sized for Alice’s small hands. Evie made a rag doll that we could open up and add weights to make it heavier and force Alice to work more. I knocked out a mini lap desk from a cardboard. Evie made changes to Alice’s pants to keep her legs from turning out. I made velcro elastics to do the same job. We modified eating utensils, squeeze bottles to teach her to drink from a straw.

The list goes on and on and on. Meantime, the coordinator was teaching us all the milestones to look for and how to jump start them. She was teaching us how to advocate for our daughter and to prepare us for being parents of a school age child with a disability. I remember one day looking at all the things that we had to worry about and in exasperation, I told the physical therapist that I just wanted to play with my daughter not have to do PT 24/7. She explained kindly that that play is physical therapy. That made it easier.

She was also the one who suggested that a good way to help Alice develop better bilateral gross and fine motor coordination was to put her good side, the one unaffected by he stroke, into a cast. We had a cast made and Alice developed enough coordination to remove the straps holding it on. I MacGyvered up straps from break-away cat collars to hold them on. It took Alice two more days how to figure out how to shake the cast off. We ended up having to get a new cast made that wouldn’t be removed quite so easily.

It was astounding how much of ourselves we put into modifying her daily life in order to give her that extra push that would cut some of the developmental delays that were likely. We took a good hard look at Alice’s greatest weaknesses and her greatest strengths and tried to maximize both ends of the spectrum. We learned and taught her sign language since her low muscle tone would likely delay speech, but it didn’t mean that it had to delay language. We found, with some degree of amusement, that ASL filtered by a very young child with with low muscle tone, delayed gross motor and fine motor was very much akin to baby talk. We could tell the difference between Alice signing grass, mommy, colors, dirty, pig, and water (all are similar signs to the chin), but few other people could.

I think the most stressful thing was the periodic evals that they did. These were two or more hour ordeals where the therapists ran Alice through her paces. Subsequently we got a report that spells out just how bad things were. Alice rarely performed speech/language during the evals, so they thought she was way behind, but we knew differently. During one eval, she only did single word signs until she got hungry and I gave her a few goldfish crackers. In front of the speech therapist, she signed “more fish there, please” Told you so.

It was rough, it was challenging. I don’t think I ever had to draw on so many aspects of learning and having to apply it consistently, but I unleashed my inner MacGyver when I could in order to give that one boost that might spell the difference between having low functioning and a high functioning adult.

Having a Child with Down Syndrome Part III: New Speak

Copyright © 2009 Steve Hawley, All rights reserved.

Here’s a scene I’d love to see on House, MD someday:

House enters a clinic exam room and sees a young adult patient with Down syndrome.

What’s your problem?

I’m sick. Why are you so sad?

(examining the patient) I’m in pain.


I was shot. Why are you so happy?

I had heart surgery. I had Leukemia. Every day is a gift.

(checking the patient’s ears) You’re an idiot.

Mongoloid idiot.

(House raises an eyebrow)

I’m a Mongoloid idiot. That’s what Down called it, but I like to be called a “person with Down syndrome”

You’re a person with an ear infection. Here’s a prescription for antibiotics. Take it for the full two weeks.

So where does this come from? Down syndrome has had a number of different names. It started with John Langdon Down who published a paper describing a set of physical characteristics that he found to be consistent with particular patients at the asylum where he worked. They reminded him of people who lived in Mongolia, so he called them Mongoloids or Mongoloid idiots. This term was more or less in place in the scientific community until the 1960’s when the condition was separated from the racial slur and called Down’s syndrome and later in the US, simple Down syndrome (capital D, lowercase s, no apostrophe). In more clinical terms, it’s called Trisomy 21.

This is because when gametes are made, in the stage of meiosis, one chromosome pair doesn’t separate, so instead of 23 single chromosomes, the 21st chromosome remains a pair. When the two gametes join, the 21st chromosome is in triplicate instead of a pair, hence Trisomy 21.

So where did all these names come from? Why the changes? Idiot has clear modern connotations – but historically it comes from the Latin idiota which was a lay person. Like many words, meanings change over time. Something meant to be a polite term, a euphemism, can be turned into an insult with the right intonation or with a sense of exclusion. Mongoloid idiot is a twofer in that sense. Similar things have happened with the word ‘retarded’ now replaced with ‘delayed’ or the ungainly ‘cognitively impaired.’

So in being introduced to Alice, I was given a first hand lesson in “person first language”. I wasn’t totally unfamiliar with it – I went to Oberlin and political correctness was de rigeur. The sense is that in speaking about a disability, the phrasing should start with the person, then follow with the disability. For example, you would say “a man with diabetes” instead of “a diabetic [man]”. The idea is that with the person first, the emphasis naturally falls on the person and not the disability. It felt clumsy at first, but I’ve become acclimated to it, and it does work. After all, you wouldn’t call someone who broke their arm a broken arm girl, unless you wanted to sound vaguely demeaning.

When I was teaching, I had a lot of kids who bandied about the word ‘retarded’ pretty heavily. I was always worried that I’d open up a can of verbal whupass, but I usually quietly asked the student to stay after class for a minute and showed off pictures of my daughter and then drove home the point that in all likelihood my daughter would be retarded and I really didn’t want to hear that word pejoratively again. It seemed to work for everyone involved. Some people just prefer to say that “words are just words”, but the people who say that think about some of the fundamentals of communication. The second worst way you can insult someone is to accuse them of something they aren’t. The worst is to accuse them of something they are.

The constructive response in many cases is to accept the pejorative and turn it around and that’s why I’d like to see that scene happen in House. It would tickle me to no end.

Having a Child with Down Syndrome Part II: The Mourning

Copyright © 2009 Steve Hawley, All rights reserved.

Hindsight is truly 20/20. On October 30th 2002, roughly the 18th week or pregnancy, I was driving us to work and backed out of our driveway and into a car I didn’t see. I was addled. Evie appeared fine, but a pregnant woman in a car accident is always a concern. Evie had an ultrasound scheduled for the next day, but her OB/GYN brought her in for one that day. In the ultrasound, they spotted a kyphosis, or a hunching in her neck. They were somewhat concerned and scheduled a high res ultrasound at a hospital with better equipment. The second ultrasound concurred. Here’s the hindsight: it wasn’t kyphosis. It was a nuchal fold and didn’t realize it.

When Alice was born via C-section, the hospital staff went into ultraconcerned mode. Alice was having trouble breathing and needed a lot of care. Evie and I waited in her room and then a mob entered. It was the entire staff that had been in the surgery, all looking very worried. “We think your daughter has Down syndrome.” This was like being hit full force with a canoe paddle. Not that that has happened to me, but I’m sure it looked that way. After a pregnant pause, we both wept – the kind of weeping that comes with an internal keening that elicits a visceral desire for your mom.

Then the guilt and the mourning began. Why? Because we’re human. Both of us grew up as children of the 70’s and 80’s where hazing and humor at the expense of those with special needs was more or less accepted. It was a time when seeing a child with Down syndrome in a regular school was a rarity (there was a guy in my class in 7th grade who had two siblins (IIRC) with Down syndrome, but they weren’t in our school). We grew up with parents who, in their own ways, pushed us or encouraged us to be the best that we could be. We grew up with the highest expectations. They carried over into our work. We were both teaching at the same school and got feedback from the kids about how smart our child would be. All of those things and more come flooding into your mind when you get news like this.

Every parent, to a greater or lesser degree, has plans, hopes, and dreams for their newborn child. The quality and scope of these aspirations change over time as your child introduces him/herself to you. Sometimes the changes are fast, sometimes they’re glacial. We got all of that in the long empty space after the doctor passed on the news. There was some hope – maybe it was mosaicism when the trisomy occurs later in fetal development and affects some cells and not others. Grasping at straws.

Think about how many simple affirmations you might have:

  • My child will go to school/high school/college
  • My child will have friends
  • my child will get married
  • My child will be independent
  • My child will be great/aspire to greatness

And imagine feeling them torn away in an instant and again every time you look at your daughter in the NICU hooked up to a ventilator, O2 monitor, IV, and heart monitor. You wonder how much more you can bear as things pile up: seizure, stroke, atrial septal defect, pneumonia, secondary infection. Yikes. I think I got sent “Welcome to Holland” by four or five people, and it was on the wall outside the NICU. No offense to Ms. Kingsley, the author of that work, but I’ve grown to loathe it.

Then comes the quest for understanding, for a cause. This didn’t last long with me. I’ve had several conditions that have wrecked me in various ways and for which there has been no diagnosis. It’s easier for me to accept a “it just happens, that’s all” reason. In that realm, Down syndrome is the great equalizer. It is equally prevalent across all races and all cultures and all geographies. I think what it comes down to is that chromosomes are tiny, sticky molecules and sometimes, small sticky things stick to themselves.

The mourning passes over time. New dreams come into play. Old dreams come back. Alice is in our local school system. Alice does have friends. Alice most likely will be independent. Alice could get married. Alice will aspire to greatness in her own way.

Having a Child with Down Syndrome Part I: The Weirdness

Copyright © 2009 Steve Hawley, All rights reserved.

When you get a new car, you often experience an odd change in perspective. You suddenly notice how many other cars there are on the road of the same make and model. When I drove a 1972 VW Super Beetle, I had it to the point where at a glance I could name the year of a beetle in a split second after seeing it. Freaky.

The same thing happens when you have a child with Down syndrome, but oddly different. We started noticing other families with members with DS, but started getting the oddly frequent happenings. When Alice was around 18 months old we took a vacation her E’s grandfather to return his parents ashes to France and to Switzerland. Nearly every day for 4 days running, we pretty much bumped into another family with a child with DS or some other coincidence. I was calming Alice down in the stroller in a small courtyard and ended up in a conversation with a couple. The man’s dad was a leading doctor at a clinic for children with DS.

As an aside, many thanks to my high school French teacher, Geri Desapio, who made the ensuing conversations possible, although I never learned the word for diaper in French, and couldn’t believe that I had to ask, “Excusez-moi, mais ou se trouve l’ecreme foufoune?” (excuse me, but where is the butt cream?).

For other parents, we have learned there is a “ah, you’re in the secret club” look. A slight nod of recognition. Sometimes it’s a short conversation – I saw a young man with DS wearing a Bruins shirt in a restaurant with his dad. I thought he had been to the semi annual fund raiser the MDSC does wherein retired Boston Bruins play hockey against a team of MDSC All Stars. This was not the case but his dad finished the conversation with “hear my words now, and believe them in 20 years – this is the most rewarding thing you’ll ever do”.

A month back, I went to visit my mom and on the way back, I pulled into a rest area – I nearly didn’t – it was a “do I really*need* a bathroom break and dinner?” dilemma. At the last minute I chose to. I saw a 25ish man with DS walking with his dad. The young man wasn’t high functioning. I saw a look of utter dedication on his father’s face, one I had seen on my own. I pulled out my phone and pulled up a picture of Alice and told him just that. He didn’t speak English. Oops. I don’t speak Spanish. Oops. He grabbed a coworker who acted as a translator. Thank yous on both sides.

This is not the strange part. Often times, I will take Alice out on “dates”. It’s a way to spend some quiet quality time with her. I usually have another purpose: errand, shopping, etc, but we will spend time together and do something special. Under these circumstances, I’ve had people – strangers – come up to me and say really odd things. One of the ones that stands out is a man who walked by us in the food court of the mall and said, “God bless you for all the hard work you do” and walked on with nary another word. How truly odd. And that wasn’t the oddest.

The coincidences go on and on.