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.