In another forum, several people asked about my experience of becoming a parent of a child with Down syndrome. Here is that story, edited somewhat and expanded.
Where to start?
I'm going to go long-form, but that's historically my style.
Spoiler: tl;dr: it stunk.
We are, for the most part products of our families and our surrounding communities and their amalgamated cultural values. When I was a kid in the 70's, you didn't see too many people with Down syndrome in my community. I suspect that many were put into institutions. It took too long to shut down those hellholes. I knew a kid in 6th grade who had two younger sisters, both with Down syndrome. They did not go to our school. I don't know where they went. I just remember seeing them one day when I passed by his house on the way home from school. They were alien - in the uncanny valley. Maybe they rode the short bus and went to a special school. In 9th grade, I remember a guy on the basketball team singing "Mongoloid" by Devo. I knew, and I don't know how, that this was about Down syndrome. I didn't find out until much later that this was half of the term that Langdon Down used to apply to his patients. Mongoloid Idiot. The name from their general appearance due to epicanthic folds and idiot more from the notion of a strictly working class person. Down had figured out that if you educate and care for people with Down syndrome, they thrive. But I'm going on.
We were both working in a school. I was technology director and therefore also did all the IT. The server room was a side room only accessible by going through a classroom that was rented out by a county group that educated kids with severe disabilities. They had a boy named Kenny who was decidedly low functioning. He, at 13, was still wearing diapers and hardly spoke. Around week 20 of the pregnancy, I was driving us to work and in backing out of our driveway, I got rear-ended. They did an emergency ultrasound to check on her (our first ultrasound) and the tech noted a kyphosis in the fetus. A what? A slight hunching. I'm going to have a hunchback? Cool! I had no clue. Nor did the tech or they would've ordered an amnio or nuchal translucency test. Hindsight, as always is 20/20.
When Mrs. Plinth was getting close to term, I suggested that since she had lunchroom duty, that it would be totally worth popping a water balloon between her knees and taking a long weekend. The due date was April 2nd, so why not call it the most inspired April Fool's day prank.
Alice was early - 1 day full term. We had gone home from work and contractions started. E was having trouble sleeping, so I excused myself to the couch figuring that I needed to be more clear headed to drive in. Around 3 we went in and got checked in. The facility was nice and we had a birth plan and a cord blood collection kit. Things didn't progress. They had a whirlpool tub and E tried to relax in the that while I promptly fell asleep sitting on the tile floor. If she could have reached me, she would have belted me. (Ed note: E says that she did, in fact, hit me. I guess I was pretty out of it)
Things were still not progressing. The doctors monitored fetal heart rate and it wasn't looking good. They decided that we would steal the team for a scheduled C section (yoink!) and they prepped E. I was disappointed. I had had training in emergency child birth and I wanted to deliver my child. They brought me scrubs and I changed and shot a mirror selfie. I tried hard not to think about how this kind of event in the not-too-distant-past would often lead to the deaths of either or both mother and child. The picture shows otherwise - I was distraught. A few days earlier, we had seen the movie "Catch Me If You Can", a story of Frank Abagnale who was a professional forger and job chameleon. I told E that I promised I would not go wandering off in the hospital and start diagnosing patients. This was not as comforting as I had intended because up until that moment, she had never thought that was on the table (trivia: at one point I successfully diagnosed one of my own doctors with Bell's Palsy).
They wheeled her in to the OR and I sat next to her head behind the curtain and joked with the anesthesiologist. They started cutting her open and I wanted so badly to stand up and watch. One in my position does not often have the opportunity to see inside a human body, living or otherwise. Still, the rational side kicked in - at that moment there were two patients, even though I'm not squeamish, there was no need to make a surprise third patient. The room contained, us, the anesthesiologist, the surgeon, E's GP, E's midwife, and at least two other nurses.
They pulled out my daughter and started to run through the usual things: goop in the eyes, goop out of the nose and mouth, run the Apgar. But then the tone in the room changed. In watching what was going on I could tell that everyone was working. They weren't just going through rote. All conversation stopped and they were speaking in curt professional words. They were also using an ambubag on my daughter and one doctor was doing chest compressions. This wasn't good. They wrapped her up and were ready to put her in a very serious incubator with heart monitors before I stopped them and made them show my daughter to my wife, who had not yet seen her own daughter and was incapacitated with her uterus resting inside out and being scraped clean.
In recovery, there was a lot of hushed tones outside our room. We waited. And waited. At one point, the entire team came in to see us. This did not look good. It was a smallish room and now there were 6 other people in there with us. The surgeon said, "Mr. and Mrs. H., your daughter had seizures when she was born. We think she had a stroke and we think she had Down syndrome. We need to transfer her to Hospital B, which has a NICU."
We both wept. Wailing. Gnashing of teeth. Worst possible news delivered brusquely by a team that didn't know how to do any different. No it got worse. E's GP, who several weeks earlier offered to be Alice's pediatrician, retracted her offer. She didn't think she was up to the task of being a doctor for a child with special needs. I lost all respect for the woman in an instant. (trivia note: one of the doctor's we stole was from a local pediatrician's office. We selected her as Alice's pediatrician - a decision that proved itself when she let us know that she was intently reading up on the care of children with Down syndrome on her vacation).
It got worse. You fill out all this paperwork, we're sending your daughter to the NICU, we're keeping your wife here. Forget the cord blood collection - the company didn't know what to do with it. I took my second step on the road to being an advocate and corrected the hospital staff. No, in fact, they were going to transfer both them. E was in recovery, shouldn't she be in a place where she can nurse her child?
I found a quiet place to call family and friends to let them know what we knew. I wasn't supposed to use a cell phone in the hospital, but fuck you. The midwife stopped by and was ready to chew me out, but thought better of it and asked me if I needed anything. I said I needed a hug. She obliged and I wept. My opinion of her skyrocketed.
Still, it got worse. They ran genetic tests while they determined that my daughter had a stroke and now had pneumonia. They sat us in a dark office in the basement and confirmed that Alice had Down syndrome in all cells tested (not mosaicism, which we were hoping for). The rep handed us a sheet of out-of-date information. The rep couldn't answer our questions about the future. She was useless.
The experience of a crowd of medical professionals coming in en masse to let us know their suspicions was a challenge. The lack of useful information from the genetic counselor was icing on the cake. This was a hard introduction to parenthood and one took a long time to get appreciably better.
When I wrote First Lady, Michelle Obama, I also wrote my state governor and my local and state representatives. Today, I received a rejection letter from Massachusetts Governor, Deval Patrick's office. This time, the rejection letter was way better. Just read it:
In this case, it is polite, specific, and congratulatory. It indicates that someone in his office actually read my letter.
Once again, nothing ventured, nothing gained.
And of course, if you donate here, you've can say that you've helped me out more than Deval Patrick and Michelle Obama combined!
Early on in working on fundraising for the MDSC for the Falmouth Road Race, I had a hare-brained idea: I would contact people in the public eye and see what happened. Nothing ventured, nothing lost. I sent a letter to Michelle Obama as well as my state and local representatives and for grins, Al Franken. Today I got my first response from the White House:
It is, of course, a rejection form letter. I find it entertaining that there is apparently a stock form letter for "asking Michelle Obama for fund raising money". I find it disappointing that the handler of this particular letter thought that the government grants web site would be an appropriate place to search for aid, especially since it fails badly on timeliness aspect. This, in particular, says "we barely read your letter, but were able to roughly sort it." On the other hand, I appreciate the quality of the paper (watermarked) and that they ran it through the autopen robotic signature machine. On a purely aesthetic level, they could have chosen a much better font and used the proper "ﬃ" ligature for "Ofﬁce" and "ﬁ" for "fulﬁll".
In other news, I've reached my personal fundraising goal, which is fantastic - thank you for all your help. If you've donated, you can rest assured that you were more help than the White House. Of course, I would like to go above and beyond, but that's in your hands. About a month to go.
New England Public radio ran a story today about birth defect testing. The full story is here.
I sent them a note in response, which I've included here:
To whom it may concern,
After listening to your story, the problem with almost any discussion of prenatal genetic testing with Down syndrome is that society presupposes that people with Down syndrome offer nothing to society. This is certainly not the case, as I have seen in my own daughter, or perhaps you have if you have seen her in PVB ballet productions in the past 4 years.
I believe that the issue is that expectant parents who are ignorant of Down syndrome are taught to fear the possible outcomes because it might be hard or challenging by doctors/genetic counselors who have also bought into this story.
I'm glad to have heard many voices that I know in the area in covering this contentious topic. I would have also hoped that you would have contacted the Massachusetts Down Syndrome Congress for comment as they have been instrumental in support and advocacy for families with a member with Down syndrome in Massachusetts.
Feel free to contact me if you have questions. I also maintain a blog about parenting a child with Down syndrome here: http://www.plinth.org/wordpress/
I guess I'm an advocate.
Good news on training for the Falmouth Road Race - I'm making good progress and my knees haven't been bothering me nearly so much, but I've been icing them regularly. Also, I'm approaching my goal for the MDSC, but of course I'd like to exceed it. Care to help? The link is here: http://www.plinth.org/frr (which redirects here). Donate or share the link too!
Copyright © 2014 Stephen Hawley, all rights reserved.
What an interesting afternoon. Alice and I did our usual shopping routine at Big Y. Alice had "1 pound American cheese" on her list and I needed to get some ciabatta rolls so I let her go ahead and grab the ticket to wait while I tried (in vain) to find them. Alice told me she got #44, so I told her to pay attention and I went back to my task, deciding to let her fly solo on this one. To my surprise, when they called 44, she instantly exclaimed, "that's me!" and went up to the counter and did everything on her own. Independence goal achieved.
After shopping was done, we went out to the car and she took her clipboard and glasses and got in while I put the shopping bags into the car. I put the cart into to the corral and when I walked towards the car, I could see Alice working on getting herself buckled. My car's seat belts have more resistance than E's. I have been assisting and scaffolding back my help. Before I got to the car, I heard a nice solid click. She had done it completely by herself. Independence goal achieved.
When we got home and put the groceries away, I knew that she wanted to go straight for the TV but had exhausted her TV allowance for the week already. I prepped for that by asking her if she wanted to help me make some chicken broth. I pulled all the wilty vegetables out while I was putting the fresh away and set up a quick mise-en-place for her and took out a large crock pot (mental note, take out the camera sooner to get more process pictures).
Alice's first job was to break all the carrots into pieces. This works both hands and is a good stabilizing task for her stroke-affected hand. Celery next, same task. Old parsley - remove from the plastic bag, take off the twist-tie and the rubber band and into the pot. She did all this while I carved up a store-roasted chicken and put the meat into containers for the fridge.
I put the bones into the crock and scraps into the crock and washed my hands. Next I set things up so she could push cloves into an onion. I poked a knife into the onion to make a half dozen X's and let Alice push the cloves into the X's. This exercises fine motor, especially her pincer grasp.
Next I put a dozen peppercorns into a spice jar lid and asked her put in 6. More fine motor and pincer grasp and she has to do the counting. Then a couple of bay leaves.
I topped the crock up with water and set it on low with a 10 hour setting. Before bed, I'll reset it for another 10 hours and in the morning, maybe more. After that, I'll strain out the solids and after the brother has cooled put it in the fridge. Later in the week, I'll make chicken noodle soup with it and the cup up chicken bits.
Now you know my recipe for home made chicken broth as well as my recipe for physical therapy and occupational therapy.
Meantime, I have to remember to make an appointment with my doctor about my knees to see what the chances are that I can do the road race. I took a week off training and the pain is less, but still bad. I really want to do the race, but I will arrange a surrogate if I have to.
Alice and I spent today at a Father's Day event at Kimball Farm that was run by Mass D.A.D.S. This event is just about the right speed for Alice: bumper boats, animal event, lawn games, lunch, arcade. The timing works out very well for her. This is our second year going and I took a ton of pictures. In the span of a few minutes, Alice summed up exactly what parenthood has been for me:
One thing I've said jokingly is that I'm my kids' second favorite person in the universe; unfortunately, everyone else is tied for first. In the first picture she went from cuddling to "yeah, let's get you out of the picture, dad." Fatherhood has been tricky that way. Right now both kids, given a choice, will take mom over me. This is draining for E and alienating for me. Tough stuff because both of us love our kids very deeply.
Alice got enough tickets on the redemption games to earn a stuffed animal. She chose an alligator and named him 'smelly alligator', which I think is hilarious. I think she chose the alligator because at the animal event, she got to touch an alligator. At home she said that he was the 'ugliest alligator'. I don't think we've heard her use a superlative like that - awesome.
On the downside of things, I've injured my right knee. Not sure what it is yet - it's on the medial side and the pain shows up mostly when I pivot. I think I'll take a week off training and maybe try a knee band/brace to see if that helps.
Here's one last picture of Alice's eyes - I really like them and the light really brought out the variety of color.
I was thinking about this a lot during today's run. I could just raise funds and not do the race, right? No - this goes against my lawful good nature (this has always been a thing with me: I think chaotic good but act lawful good). The benefits go across the board: from the training, I will be in better physical condition which is better for my health and as a consequence, better for my family. In the race, I will be wearing a singlet for the organization, which will serve the MDSC for promotion, as will any photos they take.
I think about these things through the training runs. It's hard to get old. When I was in my early 20's, I did a 10K at about an 8 minute per mile pace. The intervening quarter century hasn't been kind, so I have to scale back my effort a lot, but this has some interesting side-effects in the training. This first time I did this race in 2012, I started training late and had to set a goal of doing the race in intervals - 3/4 running, 1/4 walking. I had a successful training run at that distance and started getting very painful stabbing pain in my hip which I couldn't cut with OTC pain killers. It was eventually diagnosed as Femoral Acetabular Impingement and I'm hoping that the steps I'm taking to mitigate it are enough.
This year, I had a better time going as I had been using an elliptical trainer through the winter so my goal is run straight through at about a 14 minute per mile pace. Looking back two years, here was my training report at this of year:
Last week's runs: M 4 (4x .75r .25w), W 4 (4x .75r .25w), F 4.5 (4x .75r .25 w; .25r .25w). Hard week as I came down with something nasty that's swollen up the right side of my head and is apparently not bacterial as the antibiotics haven't touched it (yet).
Interestingly enough, today I did 6 miles total (6 x .75r .25w), the running portion alone was the same as long Friday run two years ago - great news. The down side to this is that at my pace, training runs take a long time. The 6 miles took me 100 minutes, average at 16 minutes per mile, so I'm right on target.
For fundraising, I'm a little more than halfway there. If you've donated already, you're awesome! If you haven't donated yet, you're awesome and you just don't know it. Please consider a donation.
Oh, this is just the kind of event that Alice loves: lots of people, lots of music, lots of noise.
She dressed up, E did her hair, and the whole family went to the dance. Alice's friends were excited to see her. E brought some gluten free pizza to the cafeteria and some of Alice's friends saw E and asked, "where's Alice?" "Up in the gym" and they vanished heading for the stairs.
Not everything was perfect. Alice saw some of the kids dropping to the floor and spinning their legs so she wanted to do that. Unfortunately, this creates a problem when you're wearing a dress. E gave Alice a talk about it. She did it again. I brought her out for a time out and a warning that the next time out would be longer and on the third time we would spend the rest of the dance in the car. She did it again. I brought her outside for the longer time out. This sunk in.
The rest of the dance was wonderful. Lots of smiles, lots of giggles, lots of running around.
I don't know what happened in the past week, but a bunch of things came on line for Alice, cognitively. Saturday didn't start auspiciously - Alice had used up all her earned TV time the evening before and she had gotten a hold of my Kindle and ordered a digital copy of Frozen and started watching it. I had no idea that my Kindle could do that. Good one. We did the shopping and Alice did a terrific job, including asking the fishmonger for "calamari tubes". She did a great job listening and doing her shopping and Alice has added a new trick to her social repertoire: she reads names off name tags and addresses the employees by name in a very sing-song tone of voice, "oh hi Bob!"
She had a ballet recital that afternoon and did a fantastic job:
Just look at that - her feet are in the right position as are her arms! And this was not isolated. Although she was a somewhat late sometimes, she was hitting most of the moves. I took many blind shots so as not to ruin the view for other parents from the camera's LCD, and she was right on!
They gave out flowers and there were more than a few people calling out her name when she got hers.
We turned right around and drove to Boston with E and her brother to go to her first major league baseball game.
Alice started off yelling "Go Red Sox!" Then she started yelling "Go catcher!" After each batter, she was looking up behind us at the scoreboard and reading the position of the next player and cheered them on by position. This is fantastic use of pragmatics and literacy! Wow!
We did some shopping today and made a stop to pick up some more sidewalk chalk and while we headed to the section, Alice was saying "Just chalk and not coloring books. Just chalk and not paint. Just chalk not..." I was afraid she was going to list the entire inventory of Michael's. Yikes. At the checkout she introduced herself to the cashier "Hi my name is Alice and this is my daddy. He's special." Was she buttering me up, do you think?
We had our occasional lunch date at Taco Bell and after we finished eating, Alice heard Firework by Katy Perry and Alice was turning real life into a musical by starting to sing out in the restaurant. Torn between being a wet blanket and encouraging music, I just hushed her while she was singing.
So real life wasn't too much like Glee...
Alice's school does a weekly Friday morning meeting. At each meeting, they have a rotating presentation done by each class. Like I mentioned earlier, we'd heard that Alice's class was presenting and that Alice would have a special part in it. I didn't know that she had the introductory speaking part. What a nice surprise. It brought tears to my eyes - especially all the applause after her turn.
Even nicer was that while I was waiting in the lobby, I saw Alice pass with her class and I overheard a conversation between two other parents who I didn't know. What I heard was, "...oh that's Alice. She's in the regular[?] class with [mumble]." "Yes, I know." "[mumble] and she's really sweet."
Here's my reaction to this (as an inclusion advocate) - kudos to both parents for knowing Alice; kudos to the second parent for being completely blasé about it; there's more work to do if there is anything but a regular class; pat on the back to E and I for helping raise a sweet child.
They went on to sing "Let It Go", but YouTube's robots won't let me post that. This is probably a reasonable case of Fair Use, but I'm not in a mood to fight that today.