Blast from the Past
Feb/100
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
Dec/090
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
Aug/090
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
Aug/0922
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.
Having a Child with Down Syndrome Part VIII: Bipolarity and Milestones
Aug/090
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
Jul/090
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.
Having a Child with Down Syndrome Part VI: Eugenics
Jul/090
Copyright © 2009 Steve Hawley, All rights reserved.
Eugenics is literally is “good product”. It was a movement that in the United States advocated for, among other things, the sterilization of those thought to be a “defective variety of the human race.” Those last words were from Alexander Graham Bell, who also thought that congenital deafness should be bred out of the human race. His influence was broad and though it started nearly a century ago, remnants of it are still with us. For example, the Clarke School for the Deaf in Northampton is considered to be one of the better schools in the country for the deaf, but at the influence of Bell who was on the board of trustees, made sure that sign language was forbidden. He wanted the deaf to better blend and breed out deafness. The Clarke School still insists on purely oral skills, which sounds a lot better than banning sign language, doesn’t it?
We are now in a new era. There are several early screening tests that are becoming routine that will indicate whether or not a developing fetus has Trisomy 21. Prospective parents are then often given biased information as to the possible future of their child. Yes, there are a number of things that are characteristic of Down syndrome – heart defects (repairable) are common, low muscle tone is common, Alzheimer’s disease is common in old age, and so on. Painted entirely in the negative, there is little hope. Yes there are other things not mentioned as often – childhood leukemia is higher than the general population – but so is survival of it. Breast cancer is almost unheard of, which is of huge interest to cancer researchers.
But that is really petty bickering and ignores the core of the issue. The argument for eugenics presupposes that someone with a disability has little or nothing to offer society because of possible or even probable side-effects of their illness or more gently, that the burden of their condition would outweigh the benefits they might offer.
This is a compelling argument because it tugs so heavily on the heart strings, but it is weak for the same reason. I have a condition that has made me very ill at several points in my life, and without appropriate medical management, it would probably leave me crippled at best. There are some indications that this is genetic. Had this been known before I was born, would it be valid to say that I should not exist because I would be more of a societal burden? This answer for me, I believe is a trivial ‘no’ and I think that there are many who would agree and very very few if any who would disagree. How can this argument apply differently for someone with a more obvious disability? The answer is ignorance and to a lesser degree prejudice. If you are ignorant as to the whole picture, then this argument appears to apply. If you have been prejudiced by a society that propagates a lack of value of people with Down syndrome then this argument appears to apply.
I don’t think I begrudge the decision that any prospective parent might make in light of Trisomy 21 screening as long as that decision was made with a fair and balanced view, which is rarely the case. If eugenics is committed out of ignorance, then eugenics is ironically bad.
I will leave you with a link to some work by Dr. Brian Skotko. I met Brian a few years ago when he was running a workshop of relationships among siblings where one of them had Down syndrome. It was fascinating and enjoyable. Dr. Skotko also did some research about how mothers in particular received the postnatal diagnosis of Down syndrome. Here is his reflection on that work. I think as much of it applies to prenatal diagnosis as postnatal.
Having a Child with Down Syndrome Part V: Changing Eyes
Jun/090
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
Jun/092
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 (http://en.wikipedia.org/wiki/Alexander_Graham_Bell#Eugenics). 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.