Today you might have seen this splashed across various social media outlets. I think it’s pretty safe to say that anyone who would call themselves my personal friend probably doesn’t use the “R” word, or if they have in my presence, they’ve been corrected. It happens, I move on. It’s an ugly, ugly word that needs to be eradicated from our collective vocabulary, just as the “N” word, and various other hateful epithets assigned to innocent people. If you’re not my friend, don’t know my kids, or don’t know anyone with a cognitive disability, I do hope you don’t use the word, because there are lots of other descriptive words that can be used in its place, and that’s really the point of the campaign.
But today I want to talk about the “other” R word. Redemption. Because ya know what? We ALL need it. And when it comes to the “R” word we who are in the world of disability DO need to give grace along with our corrections when that word is used. It’s great to stand up for what’s right, but let’s also let people dig themselves out of the ditch when they’ve just dug one for themselves.
Last year as my husband was in his first year of coaching high school baseball, before the season even began he gave the “R” Word speech to his entire team. He’s very fortunate to share coaching duties with a group of very honorable and intelligent men who do NOT disgrace themselves by telling off-color jokes, call people names, or use racial epitaphs of ANY kind. (It was great to have “that” issue out of the way). So he had the talk with the boys and the season began. Well not too far into the season a couple of the guys messed up. They used the “R” word in the dugout. And they were called on it instantly. Because the “R” word permeates our culture SO MUCH, these guys truly didn’t even realize they had said it and when the coaching staff came down on them they were immediately sorry. Very sorry. Ashamed. Embarrassed. They apologized. So you know what my husband did? He forgave them. He gave them some grace. They messed up, it happens.
And you know what? Those two boys just happen to turn out to be our favorite babysitters now! They are AWESOME with both of our kids! The other night we came home after an evening out and they ballplayer-babysitter-de jour had Hayden COMPLETELY engaged in a game and giggling so hard I thought Hayden was going to fall over laughing. That almost NEVER happens!! Do you know what JOY that brings to a mom of a kid who is usually marginalized, ignored and left in a corner, sometimes in our own home with other babysitters? I just about started crying with joy! (I should note that the other baseball-player-babysitter is no doubt equally engaging with H, it’s just I didn’t catch him in the act of entertaining him)
So ya, people make mistakes. People who live outside our disability-world bubble often have NO IDEA how hateful and hurtful the “R” word is to us, but if you give people second chances, sometimes it might go further than just telling them it’s wrong. Sometimes they get to know our kids for the individuals they are and they come to realize the “R” word doesn’t belong in the same zip code as our funny, creative, caring, and deep children. I hope they take that message to their friends and continue to spread the word to end the word.
Dear Friends and Family, and complete strangers who read this blog (don’t worry, there’s only one of you, so I’m not too worried about you spreading state secrets about our fascinating little tribe),
I’m sorry to inform you that you’ve just stumbled across our family Christmas letter. I know, I KNOW!! You’re thinking, “This is SO TACKY! Using a BLOG to send out your annual Christmas letter? How gauche!”. Yep, that’s me, up to my ears in gauche. So sue me for using technology the way Tim Berners-Lee intended for it to be used (he’s the inventor of the internet, by the way). I promise this won’t be one of those “tell all” tales that leaves you wanting to shower afterwards. Neither will it be tales from the “My kids are so perfect, you must be so jealous” pile of dreaded Christmas tomes. Pu-leeeeze. No, this will be real stuff from a real family, hopefully written in such a way that you won’t want to toss your cookies.
Let’s take this from the top down listing the major highlights:
JEFF: Started coaching baseball at his high school alma mater. Finally. So exciting to see something you KNEW was going to happen someday really happen in real life. (Little back story: when Jeff & I started dating 147 years ago (by the way, we met when I was 12 and got married when I was 15, for those of you wondering how someone could still look so awesomely amazing after all these years. Either that, or I went to one too many Botox parties during our time in LaLaLand. I’ll never tell), I remember telling him on one of our first dates that he should coach baseball. He balked at that idea (get it–he “balked”? Am I a baseball wife or WHAT? Too late to turn me in for a trophy wife now, because I drop lines like that AND “61 in 61” on a regular basis…….but I digress), but I just knew somehow, some day he would be coaching. Of course he’s loving it, of course his guys adore him. He coached the Junior Varsity last year and taught them the finer points of balance points, release points, and “throw the ball, catch the ball” about a gazillion times each practice. We went to as many of his games as possible and I’m sure we’re well known around town now as the mom of The Boy Who Spends All His Time Lying On The Cool Dirt UNDER The Bleachers, and the mom of The Girl Who’s Getting Frequent Flier Points At The Local E.R. getting stitched up from one of her many mishaps while hurling herself against sharp objects while Dad’s team is playing a game.
Jeff continues his incredible work rebuilding the basement (and other improvements) at his late grandmother’s house. For the first year or so of this endeavor we all stayed at his mom and dad’s house while he worked at his grandmother’s house, but I think one too many dinners featuring quinoa (or was it handmade mushroom raviolis, or bean burgers, or kale and spinach soup?) did them in. We began sleeping over here in May and Jeff continues his work downstairs. It’s crazy good work he’s doing down there and the thought is that we will live here after the reconstruction (but if you’ve followed our lives for any length of time you know we no longer make predictions on how things will turn out). In the meantime, 99% of our lives remain in the storage-garage-of-love and I’m still wearing the same six shirts (in rotation, not at one time) that I wore when when our happy little caravan arrived here in OurTown in March 2012 (sad, I know, and I apologize to all who have to look at me in public). In the course of this little epic undertaking we have had the socks blessed clean off us by a couple of men from our church who are incredible craftsmen: one of them is a drywall WIZARD and he came toward the end of the summer and wham-bam-thank-you-ma’am helped Jeff finish putting up wall board in about two and a half days. This, after he and his wife had helped us paint the upper level of the house (including the ceilings) which helped us get moved in here to begin with back in May. The other man (also named Bill) is a retired cabinet maker who just whipped out a plumbing clean-out cover-box-thing for the main living space downstairs last week. It’s like watching one of Santa’s elves: he comes in, takes some measurements, chats for a few minutes then he’s off to his garage workshop. Bam! We get a call a few hours later….the box cover-up thingy is done. Like a boss!! So we are super thankful that these people have appeared in our lives. Not only do they do fantastic work that’s going to last for the life of the house, they’re experts in their field and have been highly complimentary of Jeff’s expert work. Always nice to get that pat on the back, ya know??
GIGI: I continue to oversee home schooling for the both the kids (more on the details of that later), am the palace chef, and chief groomer and dog walker. Oh, and I knit whenever I get the chance. And I may or may not be addicted to social media with my various blogs, on-line listservs I either moderate or participate in, and a Western Slope of Colorado group I’m trying to grow to help parents of kids with disabilities get and stay connected on this of the Continental Divide. Some of the books I’ve either recently read/listened to or am reading right now include (because I know you care) “In The Company Of Newfies” (a dog book–shocking, I know), “The Night Circus”, various cookbooks, and I’m working my way through the Jack Reacher series by Lee Child. I’m in the middle of some ridiculous on-line exercise program where they try to kill you with sit ups, leg lifts and some weird thing called a “plank” everyday. I did 85 sit ups today and if I had the strength to crawl to the freezer to get myself a bowl of ice cream as a reward I would.
HAYDEN: The Dude. BIG year for The Dude: he played basketball (for the first time) with the local Special Olympics team and managed to pick up an adoring fan named Savannah. He wants his dad to build a wing onto the house just for her. She’s a wonderful (and pretty, did I mention PRETTY??) high school student who’s been spending extra time with him walking at the mall (and when the ice melts off the sidewalks, the park) to get him exercise. He also played a little thing in OurTown called “Challenger Baseball”. It’s pretty much the greatest thing since sliced bread for kids with special needs and their families (if you want to read more on that, it’s here in my blog). He was on the Special Olympics soccer team, but I hesitate to say that he actually played. Two reasons: VERY PRETTY junior high age girls were there to help the kids so he spent 99% of his time literally hanging on their arms flirting up a storm, and secondly, his policy on soccer seems to be this: “Yes, I’ll kick the ball. There, I kicked the ball. Are you happy? What? You want me to kick it again? And then again and again? Why would I do this? I’ve clearly demonstrated that I can adequately kick the ball once. My work here is done, now where’s that cutey-pie Katie?” But he does get out there and move, ever so little, so we may sign him up again. If nothing else, just to torture him by not bringing home the pretty junior high school girls home with us afterwards. Listening to music is his number one reason for being on planet Earth right now, and his favorite past time is lie on the floor with headphones on connected to the radio. I use that to my evil advantage during school time and only let him listen as a reward for jobs well done. I have my ways.
In November of this year he again had to have a tympanomastoidectomy, this time on his right ear. Big. Fat. Bummer. Another major MRSA infection. The E.N.T. (whom Hayden calls “Dr. Friend” because he’s just that awesome and he adores The Dude) is confident that they got it all. Please pray that they did; these surgeries are a big hairy deal and this was number eleven. While we were in the hospital we were taken care of by an anesthesiologist who has a child with special needs, and our favorite pediatric nurse who took care of us during his two surgeries a year ago, was there for the two days Hayden was there this time. God’s provision.
DELANEY: Our little Whovian isn’t so little any more, or maybe she doesn’t seem so little any more because she’s almost as tall as I am now–so that puts her at @ 4’10″…….OOOOOH! (Ya, I’m that short.) But back to her: She’ll be 14 on January 10th (please send any an all unwanted and unused Legos to her), she’s been super busy and active, especially since moving over here to Grandmother’s hood: she’s the Queen Of The Street with a band of little minions from the neighborhood in tow where ever she goes looking for spiders, praying mantises, building forts, and patrolling the mean streets of Our Town (okay, just this street and one street over) with Nerf rifles and bandoliers slung over their shoulders. Since we’ve had snow on the ground since Thanksgiving they’re spending all their time on a hill near the local hospital just a couple of blocks away, racing down the hill on sleds and having a great time. So far no trips to the E.R. (just fifteen feet from where they’re sledding), although we’ve heard reports of her getting her head stuck under the fence after a particularly speedy descent down the slope, and her sticking her tongue to a metal pole (yep, I’m “that girl’s” mom), which is nice. She continues to play her violin, somewhat under duress, although she’s lately been awakening to the fact that maybe it is kind of nice to hear something being played on a CD or the radio and then be able to play it. She turned her head quizzically when I informed her recently (for the 500th time) that it’s very rare that a person can do this and that her musical abilities are like she’s sitting on top of a pile of gold bullion. Right now she’s endearing herself to her violin teacher by pet sitting her menagerie of pets for her while their family is out of town. She may want to continue playing, just so she can pet the chickens and play with the dogs, who knows?
Home schooling this year is taking her to exotic places like Middle Earth with Bilbo Baggins and across Alegasia with Eragon. During the summer she went to a science camp (in the real world) for a week, because who WOULDN’T want to dissect sheeps’ brains for fun? (Wait, do sheep even have brains? Maybe they were playing Halo the whole time and we, the parents, never knew better. Never mind). She’s participated in a couple of science webinars where she built a solar oven, and something with LED’s and circuits, and she’s built a few things on her own with her science kits too. In between the regularly forced sessions of handwriting and grammar (and she just started a Latin word roots program), and math, we just try to keep her supplied with K’nex and Legos building materials and plenty of physics and chemistry activities. For Christmas she wrote a book for us that she wrote and typed entirely on her own. (I’m pausing to beam with pride….and to gloat a little that all those forced handwriting sessions, grammar lessons, and keyboarding practices written into her daily schedule are paying off. Done gloating now…..) The title of it is “Lost”. I think she may be doing a little more editing on it and then she may reprint it. I’ll let you know where you can pick up your very own copy when it’s released in its final form.
This past Fall she played on a soccer team for typical girls and seemed to enjoy it. The girls were a couple of years younger than her, but it was a pretty good match ability-wise. Size-wise, that’s when we starting cluing in that she is still much smaller than girls of her own age (she was only taller by a few inches of a couple of the ten and eleven year olds she was playing with). Jeff’s blaming my side of the family, I’m blaming his…..go figure!! But back to soccer: she had a really had a good time overall and once we told the coaches that she’s wired a little differently, she got private coaching lessons before each practice and they made sure that she understood what they were saying, instead of just assuming that because you’ve told a child something, they get it. The entire team improved quite a bit over the season and it was fun to watch. Hopefully she’ll make an appearance for the Spring soccer season too. You never know. You truly NEVER know. Never a dull moment!
LIVESTOCK REPORT: We are down one, as Angus, our much beloved, yet very evil, Cairn terrier went over the Rainbow Bridge in July. He was at least 13 years old and gave us every ounce of orneriness, trouble, plotting, and joyous fun any Cairn terrier can claim to have. DP is working on an Angus-themed scrapbook, the supplies for which she received for Christmas, which I think will continue to help her. We all miss him every day.
Mimi The Wonder Cat is still accounted for in her cell, errrr…I mean “bedroom” where the girl-child has her secreted away both day and night. Every once in awhile we see her in the common area of the upstairs living room/eating area, parading around in a winter sweater or a kitty-size (albeit a LARGE kitty-size) Dodgers baseball shirt. She is the best cat who’s ever lived and has DP convinced that she can talk and ask for food, though we think it’s more like, “Please! Release me! Now!”
She-who-holds-down-the-floor is still awesome and wonderful. Weighing in at 120lbs, Shalom our Newfoundland, is doing great. She’s the belle of the ball getting brushed a few times a week, getting all the leftover cinnamon & almond butter toast a girl can ask for, and a couple of weeks ago she discovered the benefits of learning how to open the door under the sink where the REAL banquet awaits: the TRASH. In a matter of days she’s managed to erase not only her spotless behavior record, but also much of Jeff’s Black Friday carpet steam cleaning work. And yet, she still lives. Usually on top of us when we’re trying to watch a movie on the TV. A testament to our good will or her hypnotic abilities over us? We may never know. She is a love and we’re all hooked on her.
Well I think in terms of squandering away the precious hours of your day, this is right up there with “Candy Crush” or “Words With Friends”. You’re welcome.
Happy New Year! Hope you’re so busy looking for the great things in your life that the hassles and problems that will inevitably come your way will pale in comparison! Please stay in touch and thanks for being our friends!!
The Christmas season can be………
*full of rejection
*full of reminders of happier times
*full of reminders of losses we’ve suffered
Did you find yourself in any of those fill-in-the-blanks? I sure did. And mostly the good ones, because I really DO love the Holidays. I LOVE being reminded that Jesus beat all the odds in being born, that His birth was and still is a really big deal, and that I, you, me, WE are HIS purpose! His love saved us from the very pits of hell. He BECAME sin in order that we might have eternal life with the Creator Of The Universe. I LOVE sharing those truths with my kids and the Nativity store is where it all begins. I LOVE emphasizing the joy of the season and baking a gazillion cookies in the process.
But some of those not so happy fill-in-the-blanks rear their ugly heads too and threaten to derail all the warm and fuzzy stuff. Right now I am really pushing through some HEAVY DUTY rejection. Maybe you are too. Maybe we’re in this together. Mine is from the last person on planet earth that I would expect it from. And the nail in the coffin of our relationship was the blank Christmas card she sent me. OUCH. This is not completely out of the blue: a year ago I discovered that she had changed her FB status to “engaged”, which prompted me to call her immediately to get the scoop. The person on the other end of the line was icier than the 17 degree car I was sitting in and even after an hour and a half I wasn’t sure what I had done to exact such vitriol and anger. Our communication since then has been one sided, with me doing all the pursuing, and when I can get her on the phone, it’s just as cold, indifferent, and icy as it was that freezing December evening in the car. I tried calling her on Thanksgiving but got no response or return phone call, so I called her again a couple of days later, only to have her not even ask one thing about us or the kids until we had been talking for well over an hour. No care for our son, who had just undergone yet another major surgery, and within five minutes of that she said she needed to get off the phone. OUCH. I understand that this person is broken. I understand that she endured five lifetimes of pain before I ever came into the picture. I understand that she is full of so much insecurity and self-doubt that she can’t the beauty of her own grandkids. But seeing something for what it is doesn’t stop you from feeling like you’ve just been sucker punched. Again. (hey, my abs should be ROCK hard by now, doncha think??!) I think it’s time to bless and release her to the care of God as I understand Him.
So what do you do? I focus on all the positive things in my life and all the positive people, of which I have many. I am very blessed. We are very blessed as a family. I try really hard to not let the rejection define who I am as a person, as a wife, as a mother, as a human being. But it is not easy by any stretch: I have to stop myself from my number one reflex in these situations, which is to justify my existence, to somehow prove that I AM loveable, that I’m worth being around, that’s it not my fault she’s always been angry at me. I no longer allow myself to go down that extremely well-worn road that is littered with the true, but ignored arguments of, “But I’ve been a GOOD daughter: I never smoked, drank, went out with boys, never did drugs of ANY kind! I was a two-letter athlete, I played in the school orchestra, I graduated from college with honors, yada, yada, yada…….” You know, all the trophies from the attics of our hearts that we pull out in a vain effort to show people that they really shouldn’t reject us. So aside from the physical workout I’m getting by actually trying to stay on an exercise schedule this Holiday season, I’m also getting a psychological workout by NOT falling into old destructive emotional patterns. Who was that guy on Saturday Night Live? He would stand in front of the mirror and say, “By golly you’re a good person and you’re worth it”…..or something like that. I’m kind of like that guy. Only with God’s promises to back me up, which helps. A whole lot.
The fact is that while we celebrate the birth of the Savior of the world, the enemy is hard at work to steal every ounce of joy he can. He’s the accuser. His soul purpose in ANY situation, but certainly Christmas where it’s so emotionally charged with how people “should feel”, is to rob us of peace of mind, contentment, satisfaction, the simple ability to “be”. And most importantly, his job is to take our eyes off of Jesus. I don’t know where you’re at in all of of this, but if you’re like me, you’re trying to rest in the knowledge that Jesus really does have your “this”. He’s got this life, He IS the answer for mankind’s questions. He has always been The Way, The Truth, and The Life. We are not alone in this world because He came to save us from the darkness that surrounds us in this world. He can’t take away the unsigned card but He can take all the rejection and pain that it brings.
Some will read this and say, “Wow, WAY TOO MUCH personal information for a blog!”. I say, “why write anything in a public forum unless you’re going to try to be real?” Still others will say, “Sounds like “Whine Fest 2013 to me”. Nope, not whining at all. No one owes me anything and I’m not entitled to be loved by even my own mother, but I can still admit my foot hurts when a bus runs over it. I hope that with whatever negative or painful circumstance you’re forced to deal with this season, you know you’re not alone. Our hope is with us. I’m going to let Him sign the card and find strength in His grace and mercy.
Tales from The Aspie Files: Yesterday afternoon as my daughter and I were pulling into the driveway she said she wanted to play with the neighbor girl, and I reminded her that she had yet to practice her violin for the day. She said she had done it in the morning. As I remember dragging her from bed for an early morning chiropractic appt, I knew this couldn’t be so. “No, no…..at 3 in the morning!”, she responded,”I woke up and couldn’t get back to sleep, so I practiced” (ya, think Yitzhak Perlman with a muter on). “Uh, NO”, I countered, “practicing at 3am does NOT count as a practice for a whole LOT of reasons, not the least of which is I would have HEARD you since your bedroom is next to ours, and if you’re not playing loud enough for someone to hear you in the next room, you’re not practicing with correct technique” (who can’t NOT hear a violin???) “Well you never told me that practicing in the middle of the night wouldn’t count as a real practice, so I didn’t know.” L O N G story short: A story involving me naively thinking that when we pulled into the driveway I had made my point (go me) and that when she trotted off to her bedroom and closed the door, she was going to crank out a legitimate practice. WRONG. WAY wrong (I found that out when I checked on her midway through dinner prep for company coming over). Nope, I lost that one because I hadn’t told her previously it wasn’t acceptable to practice in the middle of the night (without actually producing sound from her instrument). I understand completely that parenting is not about “winning” and “losing”. I get that. But the absurdity of some of the haggling-over-the-minutia that seems to consume many of my waking hours is nothing short of mind boggling.
I posted that story to my FB timeline. I don’t often share autism/Asperger’s related stories on my FB timeline, or in real life for that matter, so this was a bit of a stretch for me. And that got me to wondering, “Why?” “Why don’t I enter into conversations with other mothers or just share some of the funny, ludicrous, and often crazy stories from our family?” It’s not ALL tales of frustration and woe, my husband and I actually spend a GREAT deal of time laughing about some of the stuff that comes out of our daughter’s mouth. She IS funny and she most certainly DOES look at life from a completely different angle.
And then I remembered that since my daughter was a baby many, MANY people (all probably very well intentioned) have explained away her behaviors since she was, well, a baby. It seems that everyone but me could explain away her aversion to lights, looking at me, sounds, movements and changes in schedule. Near-strangers would instantly tell me, “Oh she’s just a normal four year old”, or “Well you know hormones…..” (and she was eight). And I don’t think I’m the only one in this situation. See, here’s what I think happens in the course of human interaction: Person A, who asks how Person B’s kid is doing, really doesn’t give a flip about Person B’s kid, her response or a possible deeper story. Or in some cases, there’s an alternative agenda going on with Person A where they really want to somehow blame Person B for whatever it is that is or is not going on with their child so they barely even truly listen to what Person A says in the first place. But one thing I think I’ve somehow learned over the years is that very few people are truly willing to “be” with you in the moment when you’re responding to a question or trying to share a funny, comical anecdote from your own child rearing experiences. They’re quick to explain everything away as “normal” childhood stuff (as if all their kids can only drink out of one glass, or they can’t put stuff in the plastic recycling bag because they can’t stand the feel of the plastic bag (but they never tell you, so you just think they’re a lazy slob), or one day decide they can’t use toothpaste anymore because the taste repulses them), they judge you for having gotten yourself and your family into this predicament, or they’re really quick to breathe a GIGANTIC sigh of relief that their kid doesn’t act like yours.
But it all sends the same message: “your stories of your wackadoodle family aren’t welcome here”, “We don’t know what to do with you, so don’t even start”. I’m far too much of an extrovert to isolate myself, so I will continue to tell my stories and share our experiences with “safe” people in my life, but I worry about the thousands of other families out there who are getting the same messages that “it’s just not that big of a deal” with whatever it is that’s going on with their child. I worry about those moms and dads out there who don’t have anyone to share some of the things that come out of their child’s mouths and that have faced our similar rejection (my husband’s family made it abundantly clear that WE are to blame for all of my daughter’s idiosyncrasies, misbehaviors, quirks, and socially inappropriate behaviors and want nothing to do with either of our kids). My hope is that everyone out there has at least one place where they can find that person; an on-line forum, a listserv, a person-to-person support group, or a friend who really “gets” it. Someone who gets that living with autism is like living in a hall of mirrors; there are places along the journey that are often comical and downright hilarious, and that where you end up is often FAR, FAR from your version of reality.
Stay sane my friends.
October is winding down and much of the attention that the disability community is currently putting on Down Syndrome for the purpose of educating and empowering the general public will shift to some other worthy cause that deserves advocacy and systems change. But before the curtain closes entirely, I want to bring out onto the stage of this blog some of the people who have not only made our journey in the world of disability memorable, they have helped change the fabric of our very beings, helping to grow us up and grow us deeper.
You see, when you’re in the labor and delivery room with your new little bundle and you’ve just been given the news (usually in very somber and grim tones) that your baby has what’s called “Down syndrome” or Trisomy 21, and they (those bright and cheery doctors) begin listing off all the terrible, horrible, very bad things that may happen to your child as he grows up, they fail to mention one very key fact: in your adventures with your new baby you are going to meet some AMAZING people. I mean straight up, knock your socks off, dynamic, interesting, powerful forces of nature that will help keep your emotional tank filled better than any energy drink. When I first wrote that sentence above, I wrote it as “….they (the doctors) forget to mention…..”, but that’s not accurate. The doctors don’t forget to mention that you’ll meet some amazing people and make new friends and have deeper relationships because, and this is important so read it carefully: THEY DON’T KNOW. There, I’ve said it, the emperor has NO CLOTHES. Doctors and nurses and everyone else who gets any kind of medical training don’t learn squat about children with disabilities, so they bring these antiquated and stale stereotypes from the dark ages into the exam rooms that at best, leave parents with NO hope whatsoever for their baby’s future, and at worst, make them want to place their baby for adoption because they don’t think they can handle having a baby with a disability who’s going to have a life filled with misery and unending sickness. I wish they would say, “Your child does have a genetic anomaly, but it’s not the end of the world. In fact, I’ve got some phone numbers here for you to talk to some fantastic parents who already have these wonderful children, and they’re more than happy to help you in any way you might need. I have some expertise on the medical end of things, but these parents are the REAL experts on ALL things Down Syndrome”. But of course, that’s a dream, and then I wake up to the real and often bleak world that parents of babies with Down syndrome often face.
For reasons I will never fully understand, I was one of the lucky ones. When the visiting pediatrician was examining our son for one of the first times after he was born, I asked him what EVERY parent on the planet wants to know after their baby’s been identified as having “something wrong” with him, “What will his future be like? I mean, is he going to be able to do anything? Will he ever walk? Will he ever read?” I, like lots of other new parents of a baby with Down syndrome, had NO CLUE what Down syndrome actually was. The only things I “knew” for sure was that all of the people I had seen with DS had slanted eyes to some degree, and they seem to be shorter than the rest of us (except for me, because I’m short). And that was the sum total of my knowledge of Trisomy 21. CLUELESS. And our doctor, God BLESS him paused and said, “Well you know, no one really knows, certainly not me. But I think if you take him home, love him unconditionally, treat him like you would any other baby and provide lots of stimulation and learning opportunities, he’s going to be able to do quite a bit”.
So the first person I’d like to recognize on stage today is our first pediatrician, Dr. Bob Underhill. Because of his humble (he didn’t pretend to know the future of another human being) and hopeful first meeting with us, he gave us some courage that we could parent him and that our baby boy at least had a chance to have a good life.
The second person I would like to introduce is the single most important person in us being able to bring our baby home from the hospital in the first place. Without her, we wouldn’t have Hayden, plain and simple. We all have choices in life and most of us have more than we realize. But sometimes trauma brings our focus so inward because we’ve been devastated to the core that we don’t see what our options truly are. In Hayden’s case, he actually opened up the world for us. You see, Hayden was born to a different mom. We were a foster-to–adopt family going through the public child welfare system and a week before Hayden was born we had lost the baby of a sibling set who had been in our care for most of that year (the older sister had been placed back with the criminally negligent family a few months prior). Our baby had nearly died in the hands of his mother who had come close to starving him to death in the first few months of his life (she had done the same thing to four of her other children and had lost custody). Our case was an ugly mess from start to finish and the finish was nearly the end of both my husband and me. But when Hayden was born, exactly one week after losing the baby (placed back with the biological family) and on that baby’s exact birth date, something sparked inside me. I was able to get a few facts from another adoptive family who had heard about this special baby who had just been born, but that was about it. The reason I bring out this next person onto my personal stage is that because this woman, who happened to have an adult son with Down syndrome, spent an hour and a half on the phone with me on the evening we had found out about Hayden’s brith, and she proceeded to tell me how many opportunities babies and children with all kinds of disabilities have now days. She spoke hope, encouragement, light, life and pure joy over this new baby whom she had never met. And she knew whereof she spoke: Kathy was the head of early intervention in our community and therefor she had a broad perspective of all the help and support out there, but without her energy and enthusiasm, there’s no way we would have gone back to the hospital to meet that little man. From that point on, Kathy was a HUGE source of encouragement, information and pure love when it came to us being Hayden’s parents.
I try my best to live my life as a testimony to Kathy’s love and devotion to all babies born with special needs and I consider it my personal mission to be every bit as informative, positive, and life giving as she has been to our little family. There is not a week that goes by that I don’t think of her, pray over her, and thank God for putting her in our lives. Thank you Kathy.
The third person I’d like to bring out is my dad. Not just because he’s my dad and he loves me, so by default I would expect he would love my kids, it’s because of how open he’s been since day one of having this kind of baby grandson, who in his generation would have been whisked away to an institution never to be spoken of or seen again. Instead, we brought this baby home from the hospital, with NO guarantees whatsoever that we’d be able to keep him (by law, the birth mother has one full year to change her mind after relinquishing her newborn) and he willingly took the ride with us. Unlike other members of both sides of our family who have asked us what Hayden knows or doesn’t know (Hayden is largely non verbal), what his future’s going to look like (I broke my crystal ball), or why Hayden does the things he does (I can barely explain my own behavior much less someone else’s), he just accepts him for who he is, he reads his body language very well, and always assumes that Hayden knows exactly what’s going on and what’s expected of him. As a result, Hayden ADORES his “Papa” and is completely happy to be with him anytime he sees him, including the three years we LIVED with him (or as I refer to those three years from my dad’s perspective, “the three year occupation”).
The fourth person I’d like to bring out is Meg. Meg is one of the first moms we met in disability and I truly hope that each of you have a “Meg” in your life. With Meg I also want to bring out a couple of other women, who also represent hope and friendship. We met Meg at the very first parent leadership/education conference that we attended when Hayden was a mere five months old. We had signed up early for this conference, but shortly after finding out we had gotten in (there’s a long waiting list for this critically acclaimed conference) Hayden contracted Infantile Spasms from the pertussis vaccine. It’s a terrifying seizure disorder and some babies never recover. To say our very lives were hanging in the balance doesn’t even begin to describe how touch and go every minute of the day felt like for us. (We kept a calendar of Hayden’s seizures and there were days that he had clusters of up to 75 seizures at a time, each seizure representing another assault on his brain.) But we had signed up, so we decided to just go for it. I remember walking into the lobby of the hotel for the conference registration and there were two women standing at the registration table. I was carrying Hayden in my arms. “Awww, look Julie!”, one of them said, “Hand him over” I stood there looking around me, thinking they were talking to someone else. “You heard me”, the shorter one said, “I want to hold that precious little baby”. The taller one was beaming with pure unadulterated joy and happiness, like I had brought this baby across the state just for them to hold. And all of the sudden, as if these two women had fairy dust in their pockets, Hayden was a baby again, and a really cute one at that. He wasn’t a medical problem, he wasn’t a diagnosis, and he wasn’t a mystery. He was just a precious baby boy dressed in baby blue and I was pretty sure I wasn’t going to get him back anytime soon.
At some point during a break in the conference, another woman came up to us and introduced herself. She was Meg and she was with a fledgling group of a parents who had just formed a statewide on-line listserv for parents of kids with disabilities and she wanted us to join. Meg’s kiddo with a disability was about ten years old at the time, and they had also been through the ringer with doctors, diagnoses, school issues, and even an organ transplant. This was a mom who had been-there-and-done-that. Nothing we could say would scare her, shock her, or make her think that our “troubles” were insurmountable. We exhaled for the first time in weeks. Because Meg sat down at that table with us that afternoon, we met a bunch of her friends through that listserv and we’ve never looked back. Meg opened up a whole new world of sharing stories, asking a bazillon questions, learning all about special education law (the Individuals With Disabilities Education Act, also known as IDEA), and how to make the world a better place for our kids who have special needs. Because of Meg, my husband and I became passionate about connecting parents together and educating everyone on disability rights and we’ve made a bunch of fantastic friends.
The fifth “person” I’d like to bring out on stage isn’t really one person, it’s an amalgamation of some pretty wonderful people we’ve met so far along the journey. I can’t lie, having a child with Down syndrome is not always hunky-spunky. Some people still believe that people with Trisomy 21 won’t amount to much, aren’t capable of much, and are too different from the rest of the homogenous population to be fully human. Not everyone’s like that, but some are. You will have to deal with these people, and not just at the check out line at the grocery store. Some of these people will be your brothers and sisters, your in-laws, your own parents, some, who used to be your best friends, but who now just can’t seem to accept your child the way you see him, and the very teachers who have pledged to teach your children. It hurts. It’s wrong and people should’t be like that, but they are. You can’t change them, but you will take it on the chin on behalf of your child to shield him, and you will discover a protective mama bear inside you that scares even you some days.
But for every one of these Neanderthals out there, I’m convinced there are two of the “good guys” out there too. There’s the special babysitter you find who innately knows how to tune into your child’s inner “station” and tracks with him no problem at all. She finds creative and super fun ways to engage with your child and she always manages to include him/her with what she’s doing with your other kids. She puts Mary Poppins to shame and you don’t know how you lived without her or how you’ll gone another day after you’ve moved away from her. Then there are the people you see but don’t know: at church there the ones who come up to you with tears in their eyes thanking you from the bottom of their hearts for bringing your child to church with you every Sunday because they see him as a huge blessing. Of course you don’t necessarily notice these people noticing you because you’re too busy trying to not be a distraction to those around you, but there are those who sincerely LOVE seeing your child every week. Then there’s the hair cutting lady who isn’t fazed ONE IOTA that your son sounds like he’s having his liver removed with a spoon every time he sits in the stylist’s chair. She doesn’t a mind a bit taking 445 breaks in what should be a fifteen minute job. She’s patient and kind to him and manages to reassure you in the middle of it all that you haven’t spawned Satan’s child, and that everything’s gong to be okay AND that he’s welcome back any time. And they hand you a kleenex when upon hearing their kind words you cry like a teenage girl. Then there are the complete strangers we meet through no effort of our own: the people my son reaches out and touches in stores, sometimes taking old stiff hands into his and then smiling at them, or the complete strangers he sits next to in doctors’ offices and then starts “chatting them up” or singing to them a particularly wonderful rendition of Twinkle Twinkle Little Star, and they don’t act like your child is a leper. They welcome the unannounced “ABC song” and the uninhibited joy of just “being”. I know it’s true that I rely heavily upon the kindness of strangers in this world, many of whom I get to meet through no effort of my own, and I am supremely grateful for their kindness to both my child and me at every encounter.
The stage of my life is full of people who choose to see my son (and hopefully everyone else with Down syndrome) as a treasure waiting to be opened. Having a child with Down syndrome is certainly not the easiest path in life to take, not by a long shot, but I wouldn’t trade the richly diverse and deep relationships it has brought to our lives for one even one little chromosome. Thank you Hayden for bringing a wonderful cast of characters into our lives who have been far better friends than we could have ever dreamed for ourselves.
“John and Susan Smith you’ve just won a brand new baby!! Come on DOWN!!” A game show announcer excitedly booms from the middle of the stage, “Charlie, tell them what they’ve won!”, the game show host adds.
So John and Susan walk excitedly to the stage, carrying a little bundle wrapped in blankets, unsure exactly why they’ve been called out in a room full of brand new parents.
“John and Susan”, Charlie booms through his mic that fills the auditorium, “You’ve just been chosen to be the parents of a very special baby. This baby is just like all the other 692 babies in this auditorium, except this one has a little extra”. John and Susan look puzzled at each other. “Extra what?”, John asks. “Well John”, Charlie begins to explain, “Your baby has what’s called an extra chromosome. But it’s not a bad thing at all, it just means that some things in your life are going to be a little different because of this extra genetic stuff. And don’t worry, your baby’s not the only one out there with this extra chromosome! No, no, not at all! Just take a look at this slide show on the screen on the stage, you’ll see that all different kinds of babies, of all colors, from every country in the world, have been chosen to have this extra chromosome. There are thousands of them around the world, and look at how they live! They’re just like every other baby; they eat, they sleep, they giggle, they coo, they smile, they sleep, they sit, crawl, stand, and motor all over their homes. They have big brothers and sisters who carry them everywhere and dress them up with the dog. They go to parades, play in the mud, eat sand, swing on swings and play hide and seek just like every other baby out there. They have GREAT lives and love their families very much, just like every other kid!!”
John and Susan watched the slide show carefully and they immediately saw that there was something different about all those babies from all over the world, and that was in how they looked. “But Charlie, those kids all looked a little “different” than the other kids. Their eyes were slanted, almost almond shaped, even if they were Caucasian. And they seemed to look a little, I don’t know how to say this, “squishier” than their brothers and sisters at similar ages.” John questioned, “You’re absolutely right John! They often do have a different appearance than their same age peers, and at first their muscles are a little “squishier”, for lack of a better term, and that’s a direct result of that extra genetic material, but don’t let their looks fool you, these kids are incredible: they have very strong personalities, they learn how to walk, crawl, run, ride bikes, ski and play soccer in their own time. And they seem to have an intrinsic ability to overcome any obstacle, and many of them have the uncanny ability to read what’s on your heart before you even have the words, and will come to you with a quiet hug, or will know when to reach for your hand even if it seems out of the blue to you.” Charlie answered. Then he paused and used a more somber tone, “I don’t want to say these kids have magical abilities but we’ve been watching these kids for years now, especially since families all over the world stopped putting them in giant brick and mortar buildings where they died at very young ages (shocked gasps rippled through the auditorium), and what we’ve seen is that for the families who choose to look at these babies as the precious prizes they are, something transformational happens in the very fabric of their family structures.. Moms and dads come together and somehow get stronger. Like, even if they were happily married before, they somehow get more joyful, more resolute, and more grateful for the little things in life. They learn to appreciate the smallest things, that the rest of us don’t even see. If these babies grew up with brothers and sisters, often times the brothers and sisters became really nice young people and grew into adulthood with a maturity and a vein of unselfishness that’s often not seen in many Western societies. We’ve also seen rocky marriages get better in the presence of these babies. We have no idea what it is exactly, because every family is different, but for the parents who choose to be a parent to these special ones, they become calmer, their waters begin run deeper. It’s almost as if these special babies give their parents a new lease on life, a new found purpose for living, even if the parent thought everything was great before the baby was born.” There was a long pause of silence in the building.
“Excuse me!! Excuse me Charlie!!”, a voice rings out from the back left of the packed auditorium. It’s a woman in her mid-30’s. She’s given her newborn bundle to her husband sitting beside her. “I know what you’re talking about!”, all heads turn toward her, “My best friend in high school had a brother who looked like the boys in that slide show. He was a little shorter than the other boys and sometimes he had to say things over and over so you could understand him, but he was a great kid. My best friend and her siblings were VERY protective of him and made sure that he played in all the games we did out on their front lawn. If any of the neighbor kids would tease Brett or try to make the game so Brett couldn’t play, my best friend’s brothers would go ballistic all over him!”, she continued with a winsome smile in her voice, “Brett made us laugh with all the funny things he used to do. I loved being around him, but I don’t know exactly what it was, it was just something special about his heart. It just made me want to be a better person…..”, she paused for a few seconds, “After growing up with Brett I’ve always made sure that I look for people who look they might need some extra help.”
“Excuse me!! Over here!”, another voice, a man’s, popped up from the other side of the auditorium, “Charlie, I remember my mom telling me about her special sister when we were growing up. I remember my mom saying that when her sister was born the doctors almost refused to let my grandma and grandpa take her home from the hospital. They wanted to send my Aunt Ginny directly to an institution because the doctor said that she had NO CHANCE of living any kind of life: that she would be sickly all of her life, that she would most likely die before the age of three, that she would never learn her name, never recognize her own parents, and never be able to learn ANYTHING, EVER. In short, they said, it would be better for everyone if my mom and dad just left the baby at the hospital and then tell everyone the baby died at birth. I guess my grandparents were really, really stubborn people because they raised such a stink at the hospital demanding to take their baby girl home that doctors didn’t feel like they had a choice, so they let them take her home. My mom says my aunt Ginny did have some health problems at first,” he paused, “You have to remember, this was in the early 1950’s, so medicine was nowhere what it is now”, he added, “But my mom said Aunt Ginny was the BEST thing that could ever happened to their family. My grandma refused to let anyone talk down to Aunt Ginny and she refused to let anyone, especially my grandpa, “baby” her in any way, just because it took her longer to learn things. She insisted on teaching her how to read at home, because she wasn’t allowed to go to public school. She taught her how to do everything around the house: sorting and folding clothes, my mom said she would make up counting games as they folded the towels and washcloths, she taught her how to sort by putting away the dishes and the silverware, and she taught her how to make all the beds. But it wasn’t like she was turning Aunt Ginny into the family maid….No, they played TONS of games. My mom says Aunt Ginny used to beat everyone at Gin Rummy, Hearts, and her favorite game of all was Monopoly. I guess my grandma thought it was really important that Aunt Ginny know what money was so they spent hours and hours playing Monopoly so Aunt Ginny would be able to buy things for herself in the stores”. He continued with a catch in his throat, “My mom always says that she wouldn’t be half the person she was if it weren’t growing up with Aunt Ginny. She said everyone could have their Captain America or Superman, she had her sister Ginny as the best hero anyone could ask for”. He sniffled and sat down.
“Well there you have it, John and Susan”, Charlie said, “You’ve got a very special baby there!”
“But wait!”, Susan interrupted, “You’ve told us this baby has an extra chromosome, we’ve seen that kids with this extra chromosome do look a little different, someone said doctors used to not even let these babies go home from the delivery room, and that they had massive health problems. We need to learn more about this!! Who’s going to help us with this whole thing?”
“Susan, I’m SO GLAD you asked that. I was hoping you would!”, Charlie chimed in, still as enthusiastic as ever, “It just so happens that when you leave this stage, there’s a door with a star on it in the back hall and it’s packed with people who want to answer your questions. Most of them are parents of these kinds of kids, but there are few really sharp doctors, and therapists who can answer your questions. ” “And don’t worry”, he added, “These are the kinds of doctors who believe that every child can achieve great things and that all children are learning all the time, at their own individual developmental levels. You’ll find great support in that room, and I have no doubt that you’ll be making all kinds of new friends in no time at all!” John and Susan looked visibly relieved and everyone in the auditorium gave John and Susan a standing ovation as they went through the curtains on the back of the stage.
It was the kind of meeting where people didn’t just rush out the door, even though they all had newborn babies to attend to. Many were standing around in small circles talking with one another, when suddenly John and Susan appeared back at the microphone at the center of the stage much to everyone’s surprise. “Charlie? You there?”, John spoke into the mic, “Yes, John, I’m up here in the booth, what can I help you with? Did you not find the room with the star on the door?”, he asked. “Oh yes, we found that just fine. And we even went in and met a few people, but then we wanted to ask you about this while we had the chance: As we were finding that door, we passed one with a sign that read “Hope” on the front of it in glittery and shiny lettering. What was that door for?” “Ah yes, the door of Hope”, Charlie paused, “That, John and Susan, opens up to a packed room of the 300 plus families here in the United States who are anxiously waiting to adopt a baby just like the one you are taking home today. You see, there are enough of these kids around who are enriching the lives of our neighborhoods, our churches, our little leagues and Girl Scouts, and schools, that it seems everyone wants to be chosen to be the mommy or daddy for one of them. In fact, being a parent to one of these special babies is apparently SO life changing and SO miraculous, that many families have adopted more than one of these precious children. So inside the door of “Hope” you’ll find parents who would give ANYthing to be in your position today: getting ready to embark on an incredible journey.”
The auditorium fell to silence and stayed there for a few seconds when all at once 50 families stormed the stage and exited stage left to go find the door of “Hope”.
Fact or fiction? Obviously the scenario is of my own design. But the facts are facts:
*This “thing” we call Down syndrome is just extra genetic material on a gene (on the 21st for those of you keeping score at home). It’s not a disease, it’s a life long condition. It’s no one’s “fault”. In many cases of Down syndrome the extra genetic material happens at the first stage of cell division.
*Doctors used to (and some practicing neanderthal medicine still do–stay FAR, FAR away from these ignoramuses) give a death sentence to babies born with Down syndrome and they WERE whisked forever away from the loving and yearning arms of a now-brainwashed mother, to be forever warehoused in institutions. (These institutions still exist today and we as a society should be gravely ashamed. I’ll save that for another post.)
*The life expectancy of people with Down syndrome, until the 1980’s was somewhere around 35. Now people with Down syndrome who grow up in families where they learn to set the table, dress themselves, vacuum their own rooms and take out the trash on trash day, grow up and get jobs of their choosing, volunteer in their communities, teach Sunday school, and do just about anything they want until the ripe old age of somewhere in their 60’s-70’s.
*Do people with Down syndrome have health issues? They certainly can: that extra chromosome CAN be tricky: our babies do have a higher incidence of heart anomalies as a result of the extra chromosome. The GREAT thing is there are fantastic pediatric cardiologists all over the country (particularly Boston Children’s Hospital) who give every ounce of their energy, expertise, and wisdom to working with our kids. They DON’T treat our babies as less-than-human or “disposable”. But, yes, there ARE still doctors out there with that archaic and criminal mindset. Watch out. Our babies can also have a higher incidences of ear infections, and issues with tonsils and adenoids, due to the very small “plumbing” (sorry for the highly technical medical term) in their eustachian tubes and sinus cavities. Is Down syndrome a death sentence? Hardly? Does it mean your child will never be able to run, jump, swing, ride a bike or swim? Not even.
*There are parent groups all OVER the country who are waiting with open arms to talk with you and answer any and all questions you might have. There are NO “dumb” questions when it comes to bringing home a baby with an extra chromosome. There ARE things that our kids do at different times than their peers and having someone “who’s been there/done that” is at times, the only thing that keeps you sane. Regardless if you’re an extravert or profound introvert, it will serve you on every level of your life and mental well-being to seek out other parents along the journey. We ALL need each other, it’s just that having a child who’s different can often magnify that need.
On a side note: If you run in a highly competitive “mompetition” type crowd, now would be a good time to evaluate what’s really important here on planet Earth. If having the first baby on the block to sit up, walk, read the Gettysburg address, or recite “El Capitain” is a deal breaker for you, congratulations, you’re about to learn what life is really all about. It may seem scary at first, but believe me, it’s worth it to learn what really matters is believing in someone no matter what. No matter what. If you thought the Filene’s Basement Sale was worth fighting over, you’re going to LOVE getting up into someone’s grill when they tell you your child can’t start school on the same day as his Kindergarten buddies because the Special Ed staff doesn’t start for three more weeks. And don’t worry, if you’re not that kind of person, there are plenty of people like me around who will gladly educate you on your child’s educational and human rights.
*There are over 300 families in the U.S. alone waiting to adopt a baby or child with Down syndrome. If you want more information go to the National Down Syndrome Adoption Network at http://www.ndsan.org, or Reece’s Rainbow at http://www.reecesrainbow.org. These are two fantastic organizations that work tirelessly to match waiting families with children from all over the world.
*There IS something special about the way our kids love those around them. But NO, they’re not always happy. Collies are always happy. Westies are always bossy. Newfoundlands are always sleeping. You get the idea. People are multi-dimensional, which by definition, means that no one is “always” anything, ever. But I digress. Back to the love………I’m 15 years into this and part of me wishes I had the answer as to what’s different about my son’s “love” as opposed to being the parent of a typical child. The other part is happy to bask in the mystery, but there are times (okay, a few times a week) that I just look at our son and get completely verklempted. He is a MARVEL: he’s endured ten ear surgeries, fought through life threatening ear infections (including having a central line installed in his chest which eventually went sepsis, because eventually all ports do; welcome to “Infectious Diseases 101”), an infant seizure disorder, has verbal apraxia (which means the muscles in and around his mouth just plain don’t work at all on some days….on top of being deaf), and he STILL has a bubbling joy about him. He is by FAR the strongest human being I’ve ever met. And not only that, there IS something special about his love. He “chooses” people. Sometimes he’ll reach out and grab the hand of a total stranger and smile. The other day at a Special Olympics fundraiser at a local restaurant he was heading back to our table after being in the front of the restaurant, but he veered off and went and sat with an entirely different family. Strangers. They were gracious and he didn’t want to leave their table. He knew where our table was. Indeed, he had been trying to get back to our table ever since we sent up to the front of the restaurant to greet people. No, he knew EXACTLY what he was doing. Maybe they needed something extra that day. They were nice people, maybe they just needed to share their warmth and understanding with someone who wasn’t going to judge them. I thanked them for their kindness as I was peeling him from their booth. They laughed.
Lately his attachment to us, his parents, is deepening, almost like he’s circling through another level of development where he’s telling us that we’re his anchor and that he’ll only trust new situations and unfamiliar people if we’re nearby. He’s been crawling up into our laps a lot more lately (he weighs 105 and is almost as tall as I am–good times!!). He’s snuggling with us in bed (‘course it probably helps that it’s no longer 147 degrees outside). And yet with people he knows, in familiar surroundings like church, or a good friend’s house, he walks in like John Wayne and doesn’t need us for anything.
*He is the best of us and we are truly blessed. If you’re already on this journey with us, it’s nice to meet you, we’re glad you’re here! If you just found out that the baby you’re carrying may have Trisomy 21 (the fancy term and more scientifically accurate term for Down syndrome), we’re really glad you’re here and I will do everything in my power to make sure you have the best information and connections to a parent group in your area. Please leave your comments and questions. Together we’re better!!
October is National Down Syndrome Awareness month in the United States and to start it off last week I posted a little something on my FB page. Had I been really tech-saavy, I would have first copied what I had written and then pasted it here on my blog, but alas, you have not stumbled upon such a thinking-ahead-kind-of-person. Instead, you found me, who just writes whatever she wants, whenever and wherever she wants. I’m freaky that way. So, if you want to see my first post in what will no doubt be a RIVETING series on ALL things Trisomy 21-As-I-See-it, follow this link: https://www.facebook.com/gigim/posts/10151588561797294. I edited my privacy settings on that post to “public”, so you should be able to see it just fine.
Alrighty, you made it through that missive. On to bigger and better things. Hopefully.
Part Deux: Why You Should Take The Journey Into Acceptance
I’m first going to address that mom (or dad)-to-be. If you’re not a mom-to-be, please read this anyway, because chances are you are going to know another human being in the not-so-distant future who is going to reproduce. It’s kind of what we people do, so I promise you this WILL be relevant in your life, probably sooner than later.
This idea is fairly simple so hopefully we won’t have to take all day explaining it: IT’S OKAY TO BE DIFFERENT. Yes, having what’s called Down Syndrome does by definition make you “different” from most of the population. Down syndrome, is in essence without going all genetics-geek all over you, is basically an extra chromosome on the 21st gene. For a long time (like roughly the first six thousand years of humanity) no one knew exactly what it was, but then an inquisitive British doctor named John Langdon Down started doing some targeted research on people who shared a bunch of similar characteristics, which eventually led more scientists to get really nosy with genes and then they figured out that it’s exactly on the 21st gene that people with Down Syndrome (named after that British doctor Dr. Down) have an extra chromosome. Voila! Mystery solved. So yes, because only one in 693 live births have this extra genetic material, it does, by definition make them “different” than the rest of the population. This is not bad. Repeat after me, “It’s not bad to be different”. This may be really, really difficult for some of you to say in front of the bathroom mirror at first because we live in a society (especially Western society) that WORSHIPS homogeneity. Think about it: if you’re a woman and you’re not a size 4, you’re a fat slob. If your kindergartener isn’t reading and writing and tying his/her own shoes by the time he/she STARTS school they’re already “behind” and labeled “slow”. If you don’t go to college you’re not “smart”, and so on and so forth. There are all kinds of ways that society uses labels to define who we are, instead of US as individuals proclaiming with confident boldness who we are as individuals and that we matter and are to be cherished simply because we ARE.
Secondly, having Down syndrome does NOT, I repeat does NOT equate to being sickly, medically fragile or weak. Did it used to? Yes. For the intents and purposes of this conversation, that’s ancient history. Now quick, let’s EVERYONE go to the nearest medical school and inform the doctors-in-training there of this revolutionary good news. For reasons that I cannot BEGIN to fathom, U.S. medical schools CONTINUE to this day to put forth the MISinformation and the outright LIES that babies born with Down Syndrome face insurmountable medical challenges simply because they have Down syndrome. This is STUPEFYING to me.
In 2008 our family moved to the SouthBay of Los Angeles (roughly the area south of LAX along the coast and down to Long Beach) and I was ALL excited, in part, because I was looking forward to meeting the families in the Down Syndrome community in Los Angeles who were no doubt accessing some of the most enlightened, cutting edge, state of the art medical advice in the country. I mean L.A. is the second largest city in America right? It’s home to the Kardashians, 40 year olds who commute to work on skateboards, more personal trainers and hot yoga studios than I can shake a stick at, and a juice bar on every corner, so surely this town was going to school me on best practices when it comes to chromosomal abnormalities. I seriously don’t think I could have been more wrong. I met moms who had given birth in some of the biggest, shiniest hospitals in the country who were told after their babies were born (these are moms who didn’t have a prenatal diagnosis) in hushed tones by doctors who wouldn’t meet their eyes, some of their doctors wouldn’t even tell them to their faces, leaving that to the nurse on duty, other doctors were extremely dour and grim in their prognoses for their babies, simply because their baby had been born with Down syndrome. They were shattered and terrified during a time in their lives when they should have been met with HUGE congratulatory hugs and slaps on the back and great hope for the future. I’m sorry, but that’s just WRONG. Now, does it happen sometimes that a baby born with DS might also have something else medically going on at the time of birth? Yes, sometimes. Yes, that extra chromosome on the 21st gene can mean that a baby has a heart condition (some are very minor while others require immediate surgery). Sometimes our babies are born needing extra oxygen (if you live anywhere on the continent in high elevations, you know this also applies to typical babies). And some are born with some digestive/intestinal things going on. But this America (and Canada too) people!! We have OUTSTANDING medical research, care and practices!! In just one generation of people born with DS all areas of medicine have advanced SO MUCH! Case in point: our son Hayden was born with what’s called a VSD: ventricle septum defect. It’s actually pretty common in babies with Down syndrome and preemies. Here are the Cliff Notes on VSD’s (keep in mind I’m just poli sci major, so I truly know nothing, but here’s what I remember): in utero, there is a flap inside the baby’s heart near or on the left ventricle of the heart. The flap is supposed to be open, letting blood flow back and forth while the baby’s growing in utero. That flap usually closes within hours of being born, after the baby starts breathing room air. For some reason this flap doesn’t always close right away in babies born too early and in babies with DS. So Hayden was born, at elevation. He needed just a tiny amount of oxygen. No big deal really (okay, okay, I admit I COMPLETELY freaked and needed oxygen myself when they told me that I was going to be responsible for his oxygen needs at home. I still remember my blood running cold, “I CAN’T DO THIS!!” I pleaded with the nurses, “I’m a Liberal Arts major with virtually NO marketable skills! He’ll die at home with my hands on the oxygen tank!!”). Okay, back to the story. So truly, in the scheme of things, needing a little O2 at elevation at birth is not a big deal. The thing is, Hayden continued to need more and more, until we went to his scheduled one month cardiology visit (yes, all babies born with DS do need to see a cardiologist within the first month just to make sure that everything’s okay) and what the cardiologist discovered was that that ventricle flap had not only NOT closed, but the oxygen we were giving him, was blowing it open even more. Not a good thing. The good thing? Pediatric cardiology has come LIGHT YEARS in the past 25-30 years. This VSD definitely would have side lined a person with DS from engaging in “normal” life activities (running, swimming, hiking, traveling by plane, etc….) born in the 70’s or 80’s, but by the time H was born in 1998, it was quickly and EASILY fixed in an operation the next day. We were home with our beautiful baby boy within 48 hours of surgery. WOW. So, all that to say, yes our babies CAN have some heart stuff going on at birth, but truly, if you’re anywhere near decent medical care, it’s NOT the end of the world. (more on how to find good doctors in upcoming posts) I’m sorry, but we’ve just come too far as a society to roll over and say “well just take your baby home and love him because he’s not going to have much of a life”.
Finally, I want to talk to you who don’t have a child or relative with DS, or who, barring a miracle (think Sarah, of Sarah & Abraham fame from the Bible) aren’t going to have a child with DS. You also have a HUGE role to play in this new way of thinking that says, “IT’S OKAY TO BE DIFFERENT”. Yes, for sure children with DS do have different features and many are easily picked out of a crowd (they tend to be shorter than their same aged peers, have slanted eyes, smaller noses and ears, and the backs of their necks are often flat). So yes, with that extra chromosome do come some cosmetic (as well as intrinsic) differences. But again, I want you to repeat after me, “IT’S OKAY TO BE DIFFERENT”. One of your kids may know another kid in school who has DS. I promise you, your child will NOT, I repeat, will NOT contract Down Syndrome from that child (you should be so lucky, but that’s for another post). It is NOT a disease, it is a condition. It is NOT contagious, so you don’t need to treat a child with whom you come in contact like they’ve got the plague. I don’t care that you’ve never met “one of those kids” and you don’t know what to do with yourself. Know this: ALL babies, children, teenagers and adults with Down Syndrome are PEOPLE. Greet them and treat them like you would ANY other person. Of course, I’m making a HUGELY dangerous assumption in my hopes that you yourself are a decent and civilized person, and don’t regularly scowl or make ugly faces at total strangers. If you regularly work with the public (bank teller, grocery store clerk, retail clerk, librarian, convenience store clerk, etc….) talk to that person who has DS like you would any other person, “Hey there, how’s it going?”, “I like your shirt!”, “I like your Buzz Lightyear you brought with you today!”, “You have a great smile”, etc……All of those phrases are great openers, or just friendly greetings. The person with DS may or may not be able to respond to you verbally, but I GUARANTEE they both see and recognize your friendly intentions. Treat them like YOU would want YOUR child or grandchild with DS (if you had one) to be treated. If you have more sustained contact with a child or young person with DS, like in a Sunday School setting, or child care at the Y, Boy Scouts or Girl Scouts, or a playgroup with other moms, do whatever you can to include that child in your activity. We’ve already established that having DS does make you different to some degree, but for how YOU interact with people, know that they’re going to be the “same” more than they are different: they want to be included, they want to have fun, they want to see what you’re doing if you’re a group leader, and they wanted to be treated like every other person in the room: with dignity and respect. Also, if you’re at ease with a differently abled child, the other kids and adults near you will take your cues and be more likely to be comfortable.
It’s high time that we stop treating ANYONE, regardless of their differences, like they’re something to be feared, just because they don’t live in the middle of the boring, homogenous bell curve. I also think it’s also high time we move beyond this ubiquitous and meaningless “awareness” thing we have going on in our culture. You can still be “aware” of someone with Down Syndrome and treat them like dirt, or worse, treat them with apathy, as if they have nothing to offer our communities and society as a whole. People with Down Syndrome are worth getting to know because they are as unique, creative, and quirky as the rest of us. Different doesn’t mean less. It just means different. And it might be different for you to move out of your comfort zone to get to know someone who is not like anyone you’ve ever met, but I guarantee you, it will be worth your effort and if you’re lucky, you just might be changed for the better.