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Having a Child with Down Syndrome, Part XIV: NDSC 2010 Convention

Copyright © 2010, Stephen Hawley, all rights reserved.

This past week, my family and I attended the NDSC annual convention, held this year at Disney World in Orlando. My son Stuart went voluntarily deaf, as is his wont, and ended up tripping over his own feet and whacking his head on the hard tile floor. While E and the EMTs looked him over, I registered for the conference with Alice. In the hall, they had a character meet and greet, so I got Alice in line so she could meet Mickey Mouse. A few minutes later, Stuart came in with an ice pack on his head and also got to meet Mickey. While E and I talked about his injury, they switched characters and brought out Cinderella, so we got back in line again.

There was a couple waiting behind me – a young man and woman, both with Down syndrome. The woman was so excited and bubbly – it was wonderful seeing her bouncing and talking about meeting Cinderella. “omygodohmygodohmygod! I’ve always wanted to meet her!” I was seeing the same thing in Alice – she could barely contain herself and was yelling, “Cinderella! ALICE HERE!” It was so touching to see Alice give her a hug and ask her to dance.

This was the crux of the emotions that I felt again and again during the conference. Down syndrome is a staircase injury. If you push a hundred people down the same staircase, you will have a hundred different injuries. While all people with Down syndrome share the commonality of the 21st chromosome in triplicate, the extras that come along for the ride vary greatly. For me, a lot of Alice’s life has centered around what would be taken away, not what would be given. Here in front of me was something that was hers – her own dream made true. No, it was not a huge dream – it was a very simple one, but one shared by girls of all ages: to meet Cinderella and dance with her, if only for just a minute.

Alice and Cinderella

Extreme Unction

The better part of the past few days have been spent in the hospital watching my mom’s health decline further and further.  We realized that she had not been given any sacraments since being admitted and asked the hospice nurse to bring in a priest.

It was a very emotional moment.  When I first learned about the various sacraments in Sunday school, I saw them like coins or stamps – that it was a goal to collect the whole set.  I also remember feeling sad that women could never collect the entire set since the sacrament of Holy Orders is restricted to men only.

Nonetheless, it felt good to make sure that something so important to mom was being provided for her.  I’ve been attending a congregational church since a little before my daughter was born.  It’s been an important community for Alice and for us as well.  The level of acceptance there feels higher than in the general public (note to general public: you have some work to do).  I think it took me a few years to get used to saying our particular variant of the Lord’s Prayer (debt/debtors instead  of trespasses) and now I had that in reverse as I was the only one to recite debt/debtors.

Having a Child with Down Syndrome Part XIII: Surprise Mourning

Copyright © 2010, Stephen Hawley, all rights reserved.

My alma mater, Oberlin, hosted a 25th year reunion for computer science students this weekend. This was an event for which I was quite eager to be an active participant. I have a strong passion for software and the process of writing software. It has been an infinitely fascinating area for me and one that I was eager to share with my friends and other students, present and former. I had a presentation that I had done at Worldcomp a few years back that I was going to recast for this audience. One of my former professors warned that I shouldn’t make it too heavy on the technical side, so I instead took the opportunity to try to present the parallels between taking an obvious problem and how thought and happenstance allowed me to turn an ungainly performing algorithm into something more nimble and contrast it with the process of becoming a parent to a child with Down syndrome.

So what does computer science have to do with Down syndrome? In writing the initial draft of the presentation, it occurred to me that there are a fair number of parallels in the process of becoming a parent to a child with special needs and the process I followed for this algorithm.

This statement reminds me of a passage I read by Raymond Smullyan in the book the Tao is Silent, where he describes heaven and hell. He wrote that heaven is not a place. It is not a destination. It is not an end goal. Heaven is a process, in this case the process of reaching enlightenment. Hell is how long it takes.

I bring this up, because giving this talk surprised me. I went over the deck at least a dozen times, adding and removing smaller and smaller things until my editing was simply nuance. I knew the talk inside and out. As part of it, I present a picture of Alice taken when she was in the NICU 7 years ago, looking like a Borg, connected to hoses and wires and the machine that goes ‘bing’. I chose this picture because it elicits a strong visceral reaction. And to my utter surprise, I joined my audience in the collective inhale. Even with the preparation and practice, even with 7 years distance between living through this event I was hit hard and I took a moment to apologize because I was getting choked up.

When I prepared this talk, I put the following in the notes for the title page: “Combination of hard CS, what I did last summer, catharsis”. And that last word was the focal point for me. Catharsis is a cleansing or a purging and that moment of pain 7 years gone by burned far deeper than I had anticipated. I knew that I was intentionally trying to take the audience on an emotional roller coaster and that is perhaps unfair, yet this is a large part of my journey and I can’t imagine not presenting it in this context.

And so I have not yet reached enlightenment, but rather than hate the length of time, I’m trying to embrace it and take the journey as it comes and to accept the itinerary, not all of which was my choosing.

The most wonderful thing about attending this reunion is striking up conversations with people who I knew while I was in college and being able to talk about our transformative moments and see the understanding and to share the passion.

Although it can get lost in the day to day trivia of potty training, oppositional behavior, and so on. Alice is a central passion in my life and I can’t help but be reminded of this intense feeling that I did not choose to be a father of a child with special needs. Instead, I was chosen to be Alice’s father. There are too many coincidences of need dovetailing with my ability to provide to be dismissed as pure happenstance.

There is nothing like some distance and perspective to remind me of the deep love that I have for my family. Yet in presenting this very human aspect of life in the context of a technical presentation, I felt like I had my particular parentage closeted – is this something that you really share? Am I breaking a social boundary by doing this? I think I had the right audience, so in this case the answers to those questions are apparent.

And still I wonder not when I will reach enlightenment but when I will no longer need catharsis.

Blast from the Past

I haven’t updated in a while – no surprise.  Here’s a blast from the past – an email I wrote some 7 years ago, six days after Alice was born.

Alice is off her glucose drip and is now breathing without her nasal canula most of the time.  She occasionally needs it during feeding because in her haste to inhale food, she forgets to breathe.

She is feeding well, and as a tribute to David Brandon, I'm required to pass on a story about bodily fluids.  While she was finishing up a bottle of breast milk in my lap, she proceeded to poo with volcanic force, coating my thighs.  Until the staff got a look at me, they
were reluctant to part with a pair of scrubs.  One look and they understood.  Alice is probably the only person who could spray me with her wastes and cause me to laugh.

On the bad news front, we got test results that we have dreaded since day one.  In every cell they tested, Alice has a duplicate 21st chromosome.  She has Down syndrome.  We had no idea that this was going to be.  We had declined the "triple screen" because
is doesn't give a reliable positive and a friend of Evie's had been on pins and needles for months waiting to find out.  We declined amnio since the probability of complications due to amnio are higher than birth defects in low-risk couples.

We are both very sad, ashamed, crushed, and broken-hearted. Both Evie and I are dreamers by nature and we've just lost a number of dreams and weren't ready to start making new ones. We will be, but we need time to mourn the lost ones.

We've talked a great deal and we do not intend to try and hide this from the world, least of all our friends.  We also believe that having a healthy 'I' will allow me/Evie to have a strong 'us' as a couple and therefore a strong 'us' as a family.

Alice is healing us.  She is a happy, adorable little baby.  The world goes away when she's in our arms.  We can't conceive that there's anything "wrong" with her. 

Even when she paints us.

Having a Child with Down Syndrome Part X: The Inevitable Comparison

Copyright © 2009, Stephen Hawley, all rights reserved.

If you have two or more kids, you compare them.  You have to.  They’re side by side, they look somewhat alike, they act somewhat alike.  People look for patterns, especially in those closest to them.

When I’m in a more depressed end of the scale, I think that Stuart and Alice are at opposite ends of the spectrum.  Stuart is sharp as a razor.  He is so quick and so bright that it frightens me at times.  I mean, he’s two and when we sit down to help Alice with her 1st grade homework, he often picks it up sooner than she does.  For example, one of her assignments is to dump out pennies, separate them into heads and tails and count each.  Stuart does that like a champ.  Alice needs guidance.  He’s 2.

Yet, I know that Alice is also at the high end of her spectrum too.  She is reading sight words and learning to sound out new words.  It’s going to be a long trip, but it’s clear that she’s going to get there.

One tipping point for me is that Alice now gets knock-knock jokes.  She knows the pattern and she totally gets the humor or at least is playing along with the gag.
Me: He Alice!
Alice: Hmm?
Me: Knock-knock!
Alice: Who dere?
Me: Soupina.
Alice: Soupina who?
Me: Soup in a bowl for dinner!
Alice: Hee-heeeee-heeeeee!

I can dissect this on all kinds of levels, but I just like the pure emotional, humor level of it.  It’s a stupid little joke we share for no particular reason and which has all the depth of a rain puddle, but her laugh is magical.

So yes, there is a natural comparison between my children – they’re both very bright and charming.

Having a Child with Down Syndrome Part IX: Exciting Windows of Normality

Copyright © 2009, Stephen Hawley, all rights reserved.

Every child is different. Every child with Down syndrome is even more different. Part of this is simple truism. By the virtue of DNA we are all unique, but due to the complications and unusual physical issues that arise, the Down syndrome population tends to stand apart more from each other than many people do. This is at odds with the 2008 National Down Syndrome Congress campaign “more alike than different”, although I think that’s just simple statistics.

At times, it is hard to accept the differences. At times it is extremely frustrating. Alice is a very heavy visual processor. It appears that she is easily distracted, when in reality she is attracted to things that are visually dynamic. It’s frustrating to have to repeat things four or five times with sign to get her to listen or respond. That these circumstances happen several times a day is especially frustrating. It’s the depth of frustration that leads one to crave normality (whatever that is – I don’t honestly know since my family was and is fairly far from normal) or pity or something else. Something, well not something different. At least not different from the rest of the world, something the same as the rest of the world.

And in moments like that there is “normality”. Alice exhibits things that are consistent with many, many girls her age. She loves princesses. She can name all of the Disney princesses. She loves animals and can name a lot of them. She loves her brother and her parents and shows that love in reflection back. One of the biggest slices of normality for her which I cherish is that she loves the Muppet Show. She knows most of the characters, knows the regular segments, and does a few things that make me smile very broadly. When Kermit introduces a guest, Alice does the wavy-armed yell. When the Swedish Chef comes on, she sings along with the theme and finishes with a pretty good “bork bork bork”, and finally when Pigs in Space comes on, she yells “Pigs…in…SPAAAAAAAACE!” I love seeing these things because I relate to them deeply. I did all of these things when I was young and the Muppet Show was brand new and it is a tremendous pleasure to see them coming back to me in reflection. I’m thrilled when Alice stops me and says, “no daddy, yook a Alice” (look at Alice) to get my attention before she does something particularly silly. I love that she enjoys airplane rides and horsie rides as much as her brother.

And in seeing these windows of normality, I do come to see that we are more alike than different.

Please Sarah Palin, Just Go Away

Copyright © 2009, Stephen Hawley All Rights Reserved

The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil. – Sarah Palin

You must be quite a privileged person, Sarah Palin. You must live in quite a nice imaginary world. In my world and my daughter’s world, we have to pay for an additional insurance policy outside of my job just to cover my daughter’s needs. She has Down syndrome too. We have had to take her to physical therapy twice a week for pretty much her entire life to teach her how to walk. Under the existing health care system, my primary insurance pays for 3 months worth of these PT visits per year and won’t be budged for more because there is no competition. It took my daughter 4 years to learn how to walk. That’s 36 months – three full years – that would not have been covered if I hadn’t been able to pick up MassHealth (Massachusetts public health insurance program) for her. My private health insurance will not pay for her to visit the Down Syndrome Clinic run out of Children’s Hospital Boston – one of finest, if not the finest program in the entire world, because they argue that there is a so-called equivalent in-plan program (I sent them a letter with all the credentials from the CHB program compared with theirs and they don’t even come close to lining up, and the in-plan program isn’t specialized for Down syndrome). If we didn’t have the option in this state of carrying MassHealth, we would be driven into penury.

So don’t pretend that a national health program would put your son in front of your lovely pejorative “death panel”. Don’t pretend that you would face hardship. Don’t pretend that your America is different from mine. In my America, I’m downright lucky to be a software engineer in Massachusetts and in a position to afford two insurance policies – because under the existing purely private system, faceless bureaucrats have already made the decision that 3 months of PT per year is enough for a girl born with hemiplegia due to a stroke at birth. Our America already made that decision for my daughter.

So you can take your patently false inflammatory pejoratives. You can take your poorly done appeals for pity, your appeals to fear, your misguided appeals to tradition and pack them up and go walking because your America isn’t good enough. Your America -OUR America- has the 37th best health care system in the world (according to WHO), and that can be and should be far better. So climb back up on your high horse and get lost. Your America is unsatisfactory.

For the Bots who are Spamming Me

Уважаемые русские роботы, вам тут не рады.

Having a Child with Down Syndrome Part VIII: Bipolarity and Milestones

Copyright © 2009 Steve Hawley, All rights reserved.

One of the hard parts of being a parent with a child with disabilities is the intimate and thorough knowledge you get of milestones. Much of early intervention for us centered around looking ahead to milestones and figuring out how to back-chain small skills into reaching milestones. It starts will simple things like object tracking, reaching up to grab toys at center line. Then it moves onto rolling over back to front, lifting up the head, rolling over front to back, discovering hands and so on. They’re all simple, simple things and it’s so frustrating, so very frustrating and depressing when they don’t happen. And really, the worst part of all is the contrast with other children.

The year Alice was born, I was teaching and acting as Tech Director for a local school. The summer after she was born, I took her to the “new moms group” that met once a week. It was entertaining that in an area as liberal as the Pioneer Valley, I was the only dad. I brought Alice, complete with her portable oxygen tank, to meet with the moms. It was hard. The contrast between what Alice was doing and what the other babies was doing was stark. I tried to think positively (“None of these children have Down syndrome.” “None of these children had a stroke.” “The playfield is not the same.”). Tried. I can’t say that I succeeded.

Yet when she reached a milestone, it was incredible. I loved watching her lifting up her head for the first time. I made wooden blocks for her that would better fit her tiny hands and was thrilled to see her stacking them up. Then I would see babies that were crawling or walking and my heart would be broken again.

And this happens again and again and again. Sometimes, I know it’s my bias coming to the party. For example, I fear the day when Alice is actively shunned by her friends that I look for it when I see her with her peers. This is awful, I know, because I don’t want to project the bias onto her or her friends, so I sit back watch for the most part. We recently went to the local cruise night, where car collectors bring out their best for show. The kids grouped up with some other kids, including two older boys who knew Alice from school. They were into some heavy duty wrestling, but they lightened up when Alice was near and were very protective of her. They went as far chiding Stuart about tackling Alice because he might hurt her neck. It was like Alice had two older brothers looking out for her.

And the highs still happen. This past year, while waiting for Alice’s mom who was getting lunch in a cafeteria, I decided to do some reading drills. For grins, I wrote ‘mommy’ on a napkin and before I could ask her to name the letters, she pointed at it and read it. Huh-wha?! She had started sight reading. Wow! Tonight we were cajoling her brother into eating at least some of his dinner, counting down the target number of bites of food. Alice did the arithmetic. We know because she spoke the steps. Again, wow!

It can be so emotionally hard to be pulled in so many directions at once.

Having a Child with Down Syndrome Part VII: Decoding the Medical Arts

Copyright © 2009 Steve Hawley, All rights reserved.

I never took Latin. In theory, I had the opportunity when I was in high school, as there was still a single Latin class being taught, but due to an aggressive honors schedule, this was not possible. The teacher was also thought to be senile, so many people avoided it on those grounds. I did have a few language arts classes that put some stress on understanding roots of words, so you pick up a couple of good things now and again. What I know has come in really handy in doctor’s offices. Anatomy and physiology are some of the last bastions of heavy Latin use, so many diagnoses are given in those terms.

Alice entered the world with seizures due to a stroke. As is common in Trisomy 21, Alice has a heart defect. She has an atrial septal disorder (ASD), which is a hole between the two atria of her heart. If it’s minor, which it appears to be in her case, it is not a problem in the short term and the course of action is to do nothing. They think that the stroke was due to a blood clot that broke free from the placenta, went through her ASD, up her carotid artery, where it broke into three pieces and lodged in three different places in her brain.

These are all scary things, so let me tell you that it paid off to have had fairly solid biology classes. Dismantling a dead frog may seem to some to be an act of cruelty, but I needed that to understand what had happened so that Alice’s mom and I could make good choices. It also helps that Alice’s mom used to design surgical tools used for cardiac surgery. What a coincidence, huh? It gets better – so where did this clot come from? I have a clotting disorder (as yet undiagnosed), but when a pediatric hematologist starts talking to you about possible causes, it’s good to have on hand the full knowledge of what has been ruled out: Protein C? No. Atnithrombin III? No. Factor V? No. Protein S? Low, but not abnormally so. And so on and so forth. Pretty big coincidence, but no correlation yet.

Where it comes in handy is when doctors rattle off lists of issues and you can pick up their real meaning. Bilateral rhinorrhea. I can’t tell you how many times we have to deal with that one. Of course, bilateral rhinorrhea sounds much better than “dual snot rivers”.

What happens when your newborn has had a stroke is that even though I know all the things that aren’t the cause of my clotting issue, they wanted my records, so I called up my old doctor’s office 3,000 miles away and asked about getting them sent out. They said, “sure that’ll take about 6 weeks.” Want to know how to get them to deliver the same day? Tell them your daughter is the NICU. Wins every time.

So we’ve learned about cardiac surgery, tympanograms, done sleep studies, learned how orthotics are made and designed, how to build strength on her stroke affected side, and on and on. It’s all necessary to try to figure out what’s best in both the big and the little picture.