In the final section of Chapter 4’s exploration of Down syndrome, I first address generalizations about Down syndrome and then detail working through the stages of grief to coming to acceptance of my daughter’s Down syndrome. I would welcome you sharing in the comments either [1] how you would describe Down syndrome to a new or expectant parent or [2] if you agree that the above picture is a beautiful one of Juliet (or both!).
On generalizations
Writing this chapter, I was hyper self-conscious of how racist, sexist, homophobic, anti-semitic, trans-phobic, and whatever other –ist would apply if you had swapped out “Down syndrome” for “black,” “female,” “gay,” “Jewish,” etc. Describing a condition paints with a broad brush, citing generalizations that, being so, generally apply to those with the condition. But if I was instead writing about “Blacks” and said for physical effects “many are elite athletes,” or for “female” and for intellectual characteristics said “underrepresented in STEM fields,” or for “gay” and said for attitude “effeminate,” well, you get the idea. Those stereotypes and generalizations do apply to those given conditions, but to write as though these are the characteristics that define those with the condition would be wrong.
Similarly, the description of commonly-associated mental, physical, and attitudinal characteristics for Down syndrome is a generalization that shouldn’t and cannot be ascribed to any single individual with Down syndrome. This is because they are individuals first and Down syndrome is but one condition they have. If you really want to know what Down syndrome “is”—beyond the basic genetic cause for the condition—then the best evidence is in getting to know a person that happens to have Down syndrome.
“Beating” Down syndrome
Not surprisingly, the person that I know best with Down syndrome is my daughter, Juliet. When Juliet was born and we found out in the delivery room, “Down syndrome” came to be a lens by which I viewed everything when observing her in those first formative months. In choosing what picture from the hospital nursery to share to announce her birth, I chose the picture in which I thought her eyes looked the least slightly slanted. When we brought her home, I was looking for signs that perhaps she did not have Down syndrome as we awaited the karyotype and hoping that perhaps the medical personnel at Baptist East had just misjudged the few physical characteristics she had. Once we visited the geneticist and the karyotype confirmed what we had been told at her birth, then Down syndrome became something to overcome.
After my brother’s classmate came to show us very easy exercises to build up her neck strength, well, by gum, I was going to work out this days-old infant so her neck was stronger. We charted all of her eliminations and brought that to the first well-baby visit with our pediatrician to see if she was tracking like “normal” kids.
Months went by and there was a spell where Juliet was not sleeping well. This led me to on-line research to find a nutritional supplement program. This program was premised on the notion that since chromosomes express the body’s biochemistry, and those with Down syndrome had just a little more genetic material, then, perhaps, that slight genetic overdose could be counterbalanced by nutritional supplements. Studies were linked that talked about how individuals with Down syndrome experienced a higher level of oxidative stress, so mega doses of anti-oxidants could counter the effect of this stress.
We drove to an ophthalmologist’s office in Southeastern Kentucky where a different physician who was associated with the nutritional supplement examined Juliet to provide a baseline before she went on the program. The eye doctor had a son with Down syndrome who he had in the office. While the doctor no doubt meant to be proud and provide some reassurance by having his son go through his ABCs, simple math computations, and reading, to me, it seemed a bit like a trick pony being trotted out to show the glorious effects of the nutritional program. Juliet began refusing the supplements as her taste buds matured so she was only on it for a matter of months. In that time, she did sleep better, she continued to make progress through her therapies, and whether that was because of the vitamins or because she was simply growing up, or a combination of the two, no one can say.
Nineteen months after Juliet was born, James joined our family. For some odd reason, in the sense that in hindsight it makes no sense, we had as a goal to have Juliet walking by the time of James’s birth. So, instead of having a toddler who was less mobile, and therefore easier to manage, we worked with our physical therapist and had Juliet walking right when James was born. James would begin walking closer to 12 months, but 19 months is relatively early for many kids with Down syndrome. Again, I felt like we were “beating” Down syndrome by hitting milestones sooner than the top end of the range of the chart the pediatrician had given us.
Mornings became a routine for the two little ones, having them sit with us at the table as we all ate breakfast together. As I got ready for work, they would sit in front of the TV watching Baby Einstein videos, and then Signing Time, which taught them basic sign language, and then I would add “Your Baby Can Read” videos which I had bought after watching an infomercial.
Juliet would go to DSL’s playgroup as soon as she was of age. Her mother and I would ask for our occupational therapist to be changed three times over the three years of first steps, believing we could get a “better one.” I would come home from work for early intervention therapies, taking some sadistic pride as Juliet would cry from the difficulty of the physical therapy sessions, thinking how hard we were working her to close the developmental gap.
Juliet would age out of First Steps at age 3 after which she could attend a Head Start preschool program. To get her ready for pre-school, we enrolled her in a day care/pre-school at a local church. Sure enough, by all accounts, when it came time for Juliet to attend the Head Start preschool at our home elementary school, we were told she was fitting right in. Looking back, I want to laugh at myself because I was happy to hear that my 3 year old was acting just like all the other 3 years olds, and took pride believing this happened because of all the work we had done in those first three years.
In all honesty, the pride was probably somewhat deserved. We had been told our daughter would be delayed by the geneticist, the obstetrician, her pediatrician, family members, books, websites, pretty much universally. But, we had proved those statements wrong, at least as of age 3: Juliet was walking, she was verbal, she was getting close to being potty trained and was by the time of kindergarten, and she was functioning as well as all the other 3 and 4 year olds in preschool.
No matter the work, the supplementation with private therapy, the purposefully educational development at home, though, as Juliet would progress through school and grow, there remained a gap in cognition and comprehension as compared to her peers. Had I remained with the same attitude I had had at the beginning, I fear for what I would have done to my little girl.
I remember sitting at the dining room table working on a math homework sheet with her. This must have been around second or third grade. It was simple arithmetic of adding and subtracting and Juliet was allowed to use a calculator. But, still, she would get some of the answers wrong, which would confound me at first because she was able to do the correct functions and additions with just the immediately preceding equation. I then became frustrated, and raised my voice, challenging Juliet on why she could work the problem right for problem 2 but not for problem 3. After a full day of school, likely an afternoon private therapy speech session, dinner, and being on the cusp of bath and bedtime, Juliet was spent for the day. She looked at me and her eyes welled up with tears, erupting into sobs saying “I don’t know, Daddy. I trying.”
I felt ashamed of myself.
Accepting Down syndrome
There was no bomb that was going to explode if we didn’t work the combinations correctly. Juliet wasn’t going to flunk all of 3d grade if half the problems were incorrect on this one homework assignment. She wasn’t going to not be able to attend high school if she didn’t work problem 3 as easily as she worked problem 2.
In that moment, I relearned a lesson I had learned early on when Juliet would struggle with a therapy exercise but ultimately master it. It is a lesson I would remind myself when my greatest fears about what may happen to her and how others may treat her. I relearned that her mother and I will have hundreds of days and thousands and thousands of hours to be her parents, to raise her, to teach her. Everything didn’t have to be solved all at once or according to the milestones set by others. We will have time to help Juliet gain the skills she needs to survive in this life.
And, berating her at the dining room table on a weekday isn’t going to get her there any quicker.
With that longer-range perspective, Down syndrome stopped being something to fear or to overcome. Instead, it became something we had to deal with, but that we would have the time for addressing and, as discussed more in the next chapter, the support to address it.
The longer-range perspective also allowed me to see what else could be attributed to Juliet having Down syndrome that until then had simply been a condition to overcome.
Appreciating Down syndrome
The first sign that suggested to the nurse in the delivery room that Juliet had Down syndrome was the way her arms and legs splayed out from her body. That hypotonia would be a challenge for Juliet’s physical therapy sessions. But now that Juliet was running and jumping, swimming in Special Olympics, and going on hikes with her brother and me, there was another aspect to that hypotonia. Like Dr. Lejeune described, that “tender languor” allows Juliet to simply melt into you when she hugs you. When she snuggles next to you on the couch, she rests her whole weight on you. I reach over to hold her hand while driving her to school and I appreciate the tenderness of her grip.
One challenge that many of us all suffer from is the ability to remember a person’s name. This is not a challenge for Juliet. If you ask her about school, or a field trip she took, or a National Park Service site that we camped at, she will not organize her thoughts around events; she will tell you who she saw at school, what was the name of the guide on the field trip, who was the Park Ranger that swore her in as Junior Ranger. When we are making plans for the weekend and they include seeing my brother’s family, Juliet will excitedly ask if we are going to see “Aunt Shelly and my cousins.” When I introduce her to work colleagues, she will later ask me about them. People are the touchstones for Juliet’s way of processing the flow of life.
While very loving, Juliet has increased her amount of sass with each passing year. If I am making a joke that she might not get, she’ll instead say that I’m “silly.” When James pesters her, she likes to pull rank and tell him that he’s the little brother. If she disagrees with something her mother or I say, she’ll chide us by referring to us by our ages, “Ok, 43″, her version of “Ok, Boomer.”
Juliet loves to sing. We are on what must be our third or fourth sing-a-long type of equipment, graduating with each technology advance in the field of karaoke. With the advent of iPads and YouTube, Juliet can often be found dialing up her favorite songs and singing along to them. While traveling on long road trips, regardless of what is playing on the radio, I’ll hear a faint melody from the back seat as she occupies herself singing songs. And, when she goes to the bathroom, she doesn’t take any reading material; instead she provides her own musical accompaniment, even when at public restrooms with others in adjoining stalls.
This is just a little bit of who my daughter is. Down syndrome remains a focus for me (clearly, I’m writing this book). But, it is no longer what defines Juliet or is a challenge that must be outworked and overcome. If the geneticist at the foot of our bed was right, and the extra chromosome came from her mother’s egg, then that makes sense to me because Juliet is an incredibly sweet and loving person, just like her mom. Perhaps it came from me and that is what accounts for the sass. Regardless, the extra chromosome in the billions of cells that make up our daughter provides challenges cognitively but not interpersonally or as a loving member of our family. This is thanks in no small part to the surprising amount of support we have received since Juliet’s birth. This support will be detailed in the following chapter.
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