As Down Syndrome Awareness Month 2012 winds to a close, I wanted to share some final, sort of random thoughts – things that have been floating around in my mind that I had hoped to find the time to delve into more deeply during the month, but . . . alas.
For what it’s worth.
The same but different. The whole “More Alike Than Different” campaign has always sort of rubbed me the wrong way. Yes, it’s true that kids/people with Down syndrome are kids/people first, and because of that, they share universal human traits, both physical and emotional. However, kids with Down syndrome are different from their typical peers: the first thing most people notice is that they have a pretty distinctive, recognizable appearance; they sound different from their typical peers, they learn and retain information differently than their typical peers, and they often have health issues that are not as prevalent in the general population. To deny these fundamental differences, or even to play them down, I think does a disservice both to the general population and to the Down syndrome community. The tendency when advocating to focus on the positive, while completely understandable – none of us wants to feel like what we present might play into any expectant parent’s decision to terminate upon receiving a prenatal diagnosis of Ds, and we all want our kids to be accepted and treated with respect and compassion – I think misses the point of advocating in the first place. At least for me. My goal is not to get anyone to see Finn “as close to typical or normal as possible,” but rather, to acknowledge his differences and not be afraid of them. To embrace diversity, you first have to acknowledge and accept differences.
Difference is all around us. There is a little person who works at our local Target. My friend Robin mentioned her in her guest post here recently (and it’s interesting, because apparently, October is also Dwarfism Awareness Month). I happened to be at Target this past weekend (okay, I’m there, like, every other day it seems), and had Kevin and Annabelle with me. When we walked in, this little person, who is probably no more than four feet tall, was stopping everyone who came in to tell them about a Red Card promotion, and she stopped us as well. Later, Annabelle said to me, “Mommy, you know that lady who talked to us when we came in?” “Yes,” I said. “Did you notice?” Annabelle said. I braced myself for some blunt, uncensored reference to her small size from my 8-year old. “Notice what?” I asked. “Her name tag said ‘Mimi,’ so that’s her name. I like that name.” I was actually sort of dumbfounded. That’s what Annabelle noticed – her name. Or at least that’s what was most notable in Annabelle’s mind. And I thought to myself, “Cool. Very, very cool.”
No, they’re not always happy. Or sweet. Or loving. I’m not exactly sure where this particular stereotype came from. Perhaps as they grow older and their intellectual impairments become more manifest, they seem – and perhaps actually are – relatively unfettered by the typical frustrations and stress factors that most of us who don’t have developmental disabilities experience; I really can’t say. What I can say is that (a) the stereotype, even though “positive,” reduces people with Down syndrome to one-dimensional, cookie-cutter caricatures rather than real people, and (b) speaking purely from my own perspective, Finn is most definitely not any more happy, loving, or sweet than any of my other kids have been. He experiences and expresses fear, and anger, and frustration, and sadness. He can be stubborn, obstinate, and yes, even bratty and obnoxious. Our biggest challenge with him at this point is tantrums; he’s been in a very tantrumy phase for several months now. When he is frustrated or doesn’t get his way or, really, is displeased in any way, he responds by screaming and yelling repeatedly at the top of his lungs. I have no doubt that this behavior has very much to do with his limited language skills; although he is making great strides in attaining more and more expressive language, it’s still not his go-to mode of communication, especially when he’s upset. Instead, he acts out and responds emotionally and viscerally, and I’ll be honest – it’s taxing.
I don’t care how smart your kid is. I’m tired of all the emphasis on intelligence and achievement. Competitive parenting is everywhere, even in the Down syndrome community. It’s great to be proud of your child’s accomplishments, but I think that too many parents, whether they are conscious of it or not, see their kids’ achievements as proof that they are at the top of the Parenting Game, or that by rising above so-called mediocrity, they are elevated to some upper echelon of parenting, and their kids to some upper echelon of kids. So much of intelligence and ability and aptitude is pre-determined by genetics and is out of our hands; we can and should provide our kids with opportunities, and we can and should challenge them, but not every kid is gifted, and you can’t make a kid into a genius – not with all the flashcards and tutoring and enrichment activities in the world – and smart and accomplished don’t equal success and happiness, anyway. Especially within the Down syndrome parenting community, I hate seeing this, the focus on smarts and achievement. I get that we’re trying to overcome old ideas about Down syndrome, but isn’t one of the big, beautiful epiphanies we’re all supposed to have is that everyone is valuable no matter how intelligent or talented they may or may not be?
Inclusion is ideal, and yet . . . It’s hard to achieve. I’ve seen most of the strides Finn has made over the four years of his life thus far come mostly through inclusion in regular family activities (his siblings treat him no differently than they treat each other, and this has served him very well), and now, preschool. The preschool he attends two days a week (I wish it were three days a week, but it isn’t cheap!) is awesome. It’s a “lab school” at our local community college, which means that it serves both as a preschool for young children, and a classroom for college students taking Child Development classes. It is a “typical” preschool that is committed to diversity and inclusion, and this makes me happy for two reasons: (1) because they welcome Finn, and (2) because the college students who are exposed to Finn and other kids with differences will benefit from that exposure. Finn is learning all kinds of wonderful things just by virtue of being included with typically developing peers. However, it only works because the powers that be are willing to make it work; they’re willing to see Finn as a whole person and not just a set of deficiencies; they’re willing to make accommodations for him (for instance, allowing him to come to school in Pull-Ups even though, officially, kids are supposed to be potty-trained to attend). Inclusion is an ideal that I believe is worth striving for, but it’s certainly not a given. It only works when all parties are willing and when appropriate accommodations are made, and unfortunately, this isn’t always possible, or in any event, it’s certainly not often the reality. And although I love Finn’s preschool and am grateful beyond words that the opportunity to enroll him there basically fell into our laps, I’m already stressing out about next year, and about kindergarten. I don’t think we’ll enroll him in kindergarten before he’s six, which means another year of preschool after this year, but in all honesty, I think he’s going to need something more than what his present preschool has to offer in order to get him ready for kindergarten. And I’m afraid that any other typical preschool that is a little more academically geared than his present preschool isn’t going to welcome him the way his present preschool has, and I know that we’re going to have a major battle on our hands to get him enrolled in typical kindergarten at our neighborhood public school in a couple years.
“Retard” is going the way of “idiot.” As much as I despise Ann Coulter and the garbage that issues forth from her, she’s right about something: “idiot,” “moron,” and “imbecile” were all, once upon a time, terms used to describe, in clinical terms, people with developmental disabilities. It’s been so long, at least in western society, however, since those words were used in clinical terminology, that they’ve become pretty far-removed from their original definitions. Such is the evolution of words. As a result, most people use them freely now and think nothing of it; they’re not considered slurs by a long shot, even by parents of kids with developmental disabilities, even though, like “retarded,” they all have their roots in the same exact place. Personally, I don’t like “idiot,” “moron,” or “imbecile” any more than I like “retard” for this very reason; it doesn’t feel right to me to disavow one while accepting the others, so I don’t use any of them, I don’t allow my kids to use any of them, and I cringe whenever I hear other people use them. But guess what – “retard” and “retarded” are headed in the same exact direction, thanks to Rosa’s Law. Although well-intended, it doesn’t serve to change people’s attitudes towards those with developmental disabilities – which is at the crux of disparaging language to begin with – it only serves to change the words. And so, because of this, in another few years, “retard” will be exactly the same in people’s minds as “idiot”: so far removed from its original meaning that saying it describes the developmentally disabled won’t even hold water anymore. So, I guess my point is just that I think about this a lot, and it kind of makes the fight against the R-word feel that much more hopeless. And that they’re all ugly words when you get right down to it, and there are dozens of alternative, handy words available to express what we want to express without making reference to entire classes of people who have been marginalized forever and a day. And also that I think the key is focusing on attitudes and perceptions.
And that pretty much wraps up Down Syndrome Awareness Month for me. In truth, though, every day is Down Syndrome Awareness Month in our house . . . and yet, at the same time, Down syndrome really isn’t very often center stage in our house. We advocate by including Finn as a whole, valuable person in our family, and by being open about what Down syndrome looks like in our family. And it’s gratifying to know that at least a few people’s perceptions have been changed because of this.
Tomorrow, hopefully, photos of Finn in his Halloween costume. Fingers crossed!
Robin is another good friend of mine whose has brought many a delicious, gourmet, homemade meal to my family in times of crisis. She surprised me by sending this to me yesterday and asking if I would post it here.
Monsters under the bed. Bumps in the night. Ghosts and goblins. Are my children afraid of these? Not anymore. When they were younger, I would assuage them from their nightmares by saying that our dog would chase any scary creatures out of the house. I would then tell them to think about playing racecars with their friends, then hug them and tuck them in tight. So what are they afraid of? The little person at Target. Why, oh why, is that? They can’t explain it to me. They just hide behind me, and occasionally peek out and stare. Her stature can’t be scary since she’s smaller than I. And it’s not like she has tentacles or eight eyes or anything strange like that. The only thing I can reasonably assume is that she is different. I explain to them that there is nothing to be scared of, she’s just like us except smaller. It doesn’t seem to get through because it’s the same every time we go.
How do you make that fear go away? Yes, expose them to people with differences, interact, play together. Show them we are all the same, each with our own unique set of gifts and problems, whether they are visible or hidden deep inside. This approach works in the classroom with the boy in the wheelchair or on vacation with their developmentally delayed cousin.
Unfortunately, I don’t know any little people so I can’t set up a playdate. I’m hoping that over time they will get over their fear as we talk about things and people that are different than we are, so that when they see something or someone different, they are not fearful but accepting. I also let them know that asking questions is okay, since that is how we learn.
What do I want them to be afraid of? The caregiver that gives them a little too much attention. The friend that offers them an easy way to forget their problems. The boyfriend that just can’t live without her. The opponent on the field who will win at any cost.
I know we were supposed to write about how Down Syndrome affects us, but the kids seem to take that in stride. A question or two about the bagger at Ralphs, then we are on to the next thing. Like why we can’t have a quarter for the giant gumball machine or arguing over who can push the shopping cart into the parking lot. I just need to figure out how to make them behave in Target like they do in Ralphs.
Jodi is a very good friend of mine. She’s a college professor (she teaches Political Science), and one of the smartest, wittiest, and most pragmatic people I know. We met when she joined my book club a few years back, and since then, she’s been an unending source of support and encouragement to me, not only with regard to Finn and Down syndrome, but through Michael’s cancer and residual health crises, and with regard to my writing. I’m honored that she wrote this post for my blog.
My son Jason was born a few weeks before Finn and I envied Lisa what seemed like a very easy pregnancy while I was sick every single day. But while my stomach stopped churning as soon as my son was born, Lisa’s life was turned upside down after Finn’s birth. Not just because Finn has Down syndrome, but also because of the medical problems — having to go to the hospital, seeing him with tubes and medical devices, etc. I sent her something I’d read long ago by Emily Perl Kingsley — “Welcome to Holland,” and then rushed off to the bookstore because on some level I think every problem can be solved with a book. I found what looked like the perfect book, “Road Map to Holland” by Jennifer Graf Groenberg so I bought two copies – one for her and one for me – and found a writer who described her journey honestly and openly. Lisa and I talked about having to mourn for the life she expected for Finn in order to accept the life he would have. But, now – four years later, I realize that every parent has to readjust their expectations of how life will turn out for their children and you really never know.
“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” – Elizabeth Stone
The reality is none of us can really predict what will happen to our kids. We try to keep them safe and teach them what they need to know to become productive, happy, well-adjusted adults. But there are no guarantees. Whether our kids get hurt or sick. Whether they become that sports star, whether they are straight or gay, whether they go to the “best school,” whether they are happy and fulfilled. Whether they give us grandchildren and live close enough so we can enjoy watching them as parents. Whether they become addicted to drugs or end up in jail. We all have these expectations for what we want for our children, but we have so little control over the outcome.
It’s interesting to see how the old expectations of children with Down syndrome were so radically different from today. Forty years ago, institutions were standard and families were discouraged from raising their own children. Life expectancies were considerably shorter and there wasn’t much hope for a fulfilling life. Now, the expectations have been broadened so much they seem limitless. Adults with Down syndrome are living productive, independent lives, falling in love, working, and pursuing all kinds of hobbies and interests.
Finn is exactly who he is supposed to be – extra chromosome and all. He’s developing on his own timetable and will become the person he’s supposed to be with the love and support of his family and friends. Just like the rest of us. That’s what I’ve learned. Parenting is accepting our children for who they are and trying not to worry too much about a future out of our control.
A few days ago, I received this email from my friend Stacey (reprinted here with permission):
Hi Lisa, I’d like to get your feedback on something that happened today.I’m working from home today and it’s a beautiful day here so I decided to walk to pick Tiven up at school. Near the school, standing near the driveway of a grocery store, was a young Asian man with Down syndrome. I’ve noticed that the older I get the younger other people seem, so who knows how old he really was, but my impression was he was probably a teenager. I didn’t recognize him as I do recognize many other people in our neighborhood, but he seemed lost and confused, so I said, “Hi!” as I passed. He turned and shuffled away.About forty minutes later, Tiven & I were walking back the same way and I saw him again, standing in the same place, still looking lost but now also scared. He was wringing his hands and flicking his tongue in & out. I noticed that he was watching the cars go by like he expected someone he knew to be pulling up. As we passed, I said, “Hi, are you OK?” and he shuffled away. I stopped a little way down the block and watched him. If he was lost, I wanted to be able to help, but how could I help if he shuffled away when I spoke to him? We’ve taught Tiven that, if she’s ever lost, to stay where she is so we can find her, but we’ve also taught her to look for someone “safer” such as a uniformed police officer or a mom with children with a cell phone who can call for help. I got out my cell phone and Tiven & I walked past him again, I tried to speak to him again, and he shuffled away again, but came right back to the same spot when we walked away.A block away there is a police station that we often pass on our way to & from school. I decided to go in and tell them about the young man I saw. I told them what had happened, described his clothing & appearance, and I said he’s not dangerous, he just seems lost & scared. I said I’d tried to help but he might need someone else like a uniformed officer. The cop looked at me quizzically, and I could tell he was thinking, “Why would some teenaged boy on the street need our help if he isn’t causing any trouble?” And then I said it. “He has Down syndrome.” And I felt guilty about that. Why did I need to feel guilty about giving the cop a useful piece of information? I don’t think he needed help because of his having Down syndrome, but because he seemed to be alone and scared out on the street for quite a long time, and because he didn’t recognize that I was willing to help. He seemed like he wanted help but he either didn’t know how to express it, or he didn’t know if it was OK to accept help, if that makes sense. For all I know, he was just waiting for his mom to finish her grocery shopping because he didn’t want to go inside on such a beautiful day!Now I’m sitting here crying about this. I hope he’s OK but I also really hope that I didn’t make matters worse by asking the cops to check on him. I’m thinking about Finn being a teenager, perhaps lost in the city on one of your visits here, and I wonder if I did the right thing or not.Stacey
I responded to her that I think she absolutely did the right thing – exactly what I hope someone would do if it were Finn – and that I think the fact that the young man appeared to have Down syndrome was absolutely relevant information.
And it got me thinking: what would most people be inclined to do in such a situation? I guess on the one hand I want to say that really, it’s not Down syndrome-specific, or even disability-specific; it would be nice to think that a person would look out for someone who appeared to be in need regardless of disability, etc. I know that the reality is, however, that very often, people just don’t want to get involved (I’m guilty of this, too). I wonder, though, if folks are generally more put off by someone who appears to have a disability – especially an intellectual disability.
What do you think?
Also, if you are the parent of a child with Down syndrome or another disability, how would you like to see a situation like that dealt with, especially if it were your child?
If you don’t know Melissa, she writes some of the most beautiful and thought-provoking things over at The Garden of My Heart. I’m really honored to have her as a guest poster here on my blog!
I’m an unabashed fan of Lisa. She has an important voice in the Ds community – a voice that I often wish was a bit louder, and more often heard. A friend of mine pointed me to Lisa’s blog when I was starting to really question a few things related to Rowenna’s diagnosis and was so happy to find someone who boldly put her beliefs out there.
So when she called for volunteers to guest blog this month I jumped at the chance. And then I sat down at my computer to write about Down syndrome and came up blank.
I panicked. I retooled some drafts I had sitting around. I started a half dozen new posts, only to come up with nothing but a few vague platitudes, and nothing that sounded like me, or represented my life with my daughter.
Finally, a friend pointed out that my lack of things to say was something to talk about. And she’s absolutely right.
When my daughter was first born, I couldn’t see an end – an end to the sadness, the pain, the frustration. An end to grieving what I thought I lost. I started to blog and couldn’t imagine I would ever run out of questions to ask or statements to make about life with Down syndrome. I read all the books and read all the online forums. I lived in Down syndrome world, despite wanting my daughter’s diagnosis to be the least of her distinguishing characteristics.
But here I am and Down syndrome has become background music. It enters my life when I choose – when I read a favorite blog, when I work with her preschool teacher on an accommodation, when I raise my voice and advocate at the state capital. It doesn’t rear up anymore, or pop out when least expected. Things that used to bring me to my knees are now things to either brush off or stop to mull over, but rarely is anything the punch to the gut it used to be. Time changes my relationship to the diagnosis, and there’s no way around it – only going through it.
There are days still when I wish she could communicate a little more (words, signs, communication device, whatever she wants) because I am just dying to hear what’s on her mind and I wish she could tell me what hurts. There are a few extra doctor appointments, and definitely extra lab work that makes me worry until the results come back. I also know there will be stumbling blocks ahead – especially around life transitions like starting school.
But the day-to-day? It’s just not right in my face anymore. The things we do are run-of-the-mill. We take walks, we read books, we buy groceries. People have all but stopped asking if she has Down syndrome. Maybe I’m just not wearing it on my face anymore – that slightly strained expression I wore around that said “accept my child!” – or maybe I’ve stopped noticing if people do a double-take.
Like I said, it’s background music. I turn the volume up from time to time because I genuinely love and respect the parents I have met and want to hear about what’s happening in their lives or because my daughter occasionally presents a bit of a puzzle so I read up on what she’s doing to better understand how to support her.
So for this Down syndrome awareness month here’s what I hope to leave behind: be patient with yourself. Time changes your relationship to the diagnosis. Some days it’s loud and discordant and you can’t imagine life will ever be different; some days it’s just in the background.
If you find among your petunias a daisy . . .
Do you pluck the daisy and cast it out because it is not a petunia?
Do you try to make the daisy as much like a petunia as possible?
Or do you appreciate the daisy for the unique beauty it possesses?
During Down Syndrome Awareness Month, blogs and Facebook posts by parents of kids with Down syndrome are bountiful with praises of those with Down syndrome. We boast about the achievements and accomplishments of our children, we write about all that they teach us and how much they enrich our lives, and generally focus on the most positive aspects of our kids who sport that extra something special.
I was going to do the same thing.
I’ve been drafting a blog post in my head for about a week, titled either “All About Finn” or “What I Want You To Know About Finn” (I hadn’t settled on one or the other yet). In my head, I couldn’t get past making a list of all of his positive qualities. You know, to raise awareness. Of how great my kid with Down syndrome is!
I finally realized tonight when I was in the shower (which is when I do some of my very best thinking) that I couldn’t bring myself to just sit down and write the damn post. Wanna know why? Because it feels like I’m trying to sell Down syndrome to you. It feels like I’m trying to sell the world on the idea that, despite the fact that he has this condition, he’s a worthy human being, deserving of respect and kindness.
Here’s the thing: I don’t want to sell you on Finn, or on Down syndrome. Because it should just be a given that he’s a worthy human being, no matter what the state of his chromosomes may be. It should go without saying that he’s deserving of respect and kindness no matter what he’s able to achieve (or not). Because he’s a person. Just like you’re a person, and your kids are people.
In our house, in our family, Finn’s having Down syndrome is neither an extra special blessing nor a curse. It just is. To paraphrase and borrow the words of George Estreich, Down syndrome is just his way of being human. Down syndrome is always present in our house, but its influence ebbs and flows. We often don’t even think about it, and sometimes it’s the subject of a great deal of focus. Sometimes its even the subject of humor. Finn is a blessing because he’s Finn, because he’s our kid, because he’s human – not because of or in spite of his having Down syndrome.
Finn is smart and delayed; he’s happy and often crabby; he’s loving and sometimes annoying; he gives great hugs and throws terrible tantrums. He’s a joy and a challenge. He’s a kid. He’s a son, a brother, a friend, and a student. In other words, he’s a person. And that should need no selling.
Just over 3 years ago, at age 44 almost 45, I gave birth to my 8th child, my son, Ashton. During my pregnancy, I had foregone the invasive testing and so I approached my delivery with a sense of fear. See … he was my fourth child born to me after 35. I was aware of people’s attitudes towards me with each birth … they thought I was playing with fire! I heard it often … “You know you’re increasing your chances of having a child with Down syndrome.” I received the message loud and clear that: If I did have a child with Down syndrome after that certain age, I would actually be blamed for wanting a baby beyond 35. To me, the knowing glances when I was grocery shopping would be *almost* the most frightening thing about it, right after having a baby with health problems, and facing the unknown. I was shocked at my own feelings about this. Why DID I let what other people think weigh so heavily? Why DID I feel so much fear about parenting a baby with Down syndrome? Life as I knew it would change forever, right? *Something* bad and unknown would surely befall us, a feeling deep inside me warned. I developed a deep interest in Down syndrome, but nothing medical can possibly replace a true life experience.
As I tried very very hard to understand the brick wall of foreboding … suppressed memories started breaking away from the cement blocks they were tied to … gasping for air making their way to the surface from the ocean of my consciousness. I had known and loved a boy “like that” once. In fact, he was my stepbrother, the son of the mother who raised me, but not him. His name was Anthony James, we called him Tony and he was 2 years younger than I was. Tony was institutionalized before the age of 4. I don’t know exactly when because when my father married my stepmother, I was 6 years old and he was already living in the institution. Can you imagine being given away by your mother to an institution? It was par for the course during that time. I have some of Tony’s baby pictures still and so I know he was with his mother until at least age 2. Tony only came home for holidays and special occasions. To a me as a 6-year-old, Tony’s situation was a puzzle. What happened to Tony to make him as he was? Was it contagious? Why did they give him away? Why does he have to go back there? Are they going to give us away too? At 6 years old, my analysis of Tony was: Tony was a good human and I loved him. He gave very tight hugs. If I was getting reprimanded and cried, Tony cried with me. If I was sent to my room, I could count on him to find me and sit there holding my hand. One of the things he often said was “It’s ok Darla.” (My parents were no picnic) We played with our dog in the backyard, which Tony loved. He was so gentle to animals. He enjoyed lining up Hot Wheels and we’d help him. Tony never wanted to go back to the institution. He cried, held onto us and didn’t want to get into the car. My sister and I also cried. It seemed so wrong to tear him away from his family and it always took a while to shake that horrid feeling after he left. Something very wrong was happening and we knew it. As a side note: My parents were extremely embarrassed of some of the things Tony did things he wouldn’t have done if he had not been institutionalized. When he was really upset, he would sit down and rock and cover his ears. These things to them seemed like the very things society disapproved of, but ironically, they were actually caused by society itself. Because children with Down syndrome were not given a chance to be anything else, their capabilities were limited and thus became like a self-fulfilling prophecy of our society. It took some brave souls who would not be pressured by others … those who would follow their own hearts and parent their children before anyone could see the real potential.
Very early on, I sensed that because of society’s intolerance at that time, my parents were ashamed. Even good-hearted people wanted to sweep the issue under the rug and pretend it never happened. My Stepmother had mosaic Down syndrome but was normal (people … I don’t believe in intrauterine murder … but no matter what those tests show, they can be wrong! ) , she only found this out after Tony was born…after a few miscarriages when they sought a genetic answer to her miscarriages. When my father found out that she had a high chance of having another child with Down syndrome, he had a vasectomy against her wishes. I know this made her feel very defective and it seemed like Tony came home less and less. Having Tony around was a reminder of her own “imperfection” and as well…the imperfection of a society not really ready to let people who were different be a part of it. I once read a poem she wrote about Tony, that I found on her desk when I was around 10 years old which said “You are also a part of this universe … God’s creation … You have a right to be here!” I knew then that she was herself a tortured soul and later I realized that she was, in a way a victim of other people’s opinions. Tony’s being sent away wasn’t only her choice, but something she was expected to do. Sending him away meant rejecting a part of herself. She wanted to reconcile all of these things but they made her a bitter and confused woman. As an adult, I feel so sorry for her. Sad that they told her she should give away her son, sad that she felt so confused about his value and hers as human beings. As children … we felt it all. We could feel the thickness of the air around others, the tenseness, the sadness and the shame, and we knew we had a secret brother.
Many years passed and I did not get to see Tony often, but one Thanksgiving, they brought Tony home. It had been 7 years since I had last seen him and I wondered if he would recognize me as an adult and that 50 pounds I had gained. He did! He came to me and hugged me so tight and said my name and cried. He had missed me too! He then looked at my baby in the carrier and asked “Is this your baby Darla? He is so cute!” as his trembling hand with crooked fingers reached so carefully to pat my son’s head. I just started crying, realizing what this meant to him, his understanding greater than I ever knew. I realized how much we had missed. I took a good look at this now man and I was just so overwhelmed at how wrong it all was … I let him hold my baby. I wondered how different things could have been. I am sad to say that this was nearly the last time I ever got to see Tony. My parents don’t want us to know where he is. When I was certain I knew, I contacted the agency, they told me they could not give me any information … it was against their policies.
When I was pregnant with Ashton, I knew that I might have a child with Down syndrome. Even with my experiences of Tony, I was very very afraid. I wasn’t afraid that I wouldn’t love him, I knew I would. I was afraid of the unknown. My parents had surely been fearful. What was it really like to raise a child with Down syndrome? Could I cope? Was the family forever changed as my parents had made it seem? Would he be born with a heart defect? Would I be guilty of making him that way? Would people look at me and then back at him with that certain knowing look? I would want people to look at my baby and see a child, but maybe they would look at him and imagine something different, something of lesser value, even though I know that my child would have been perfect in my eyes. I wasn’t sure I was strong enough for that scene to be repeated over and over again. That is when I met Lisa on a pregnancy/parenting site …
I started following Finn’s life during my pregnancy in 2009 and I was surprised to see: A cute baby with Down syndrome in a normal family. He was not made from a Down syndrome cookie cutter, he was an individual person with an extra chromosome. Lisa’s honest approach was something very real and not sugar-coated, She had her highs and lows, and when you read it, you knew she was telling the truth … Life really does go on. I was able to see her struggles as she dealt with other people’s limited understanding. I was able to resolve that in my mind. How can they REALLY know what it’s like to love someone with Down syndrome if they’ve never been on the inside? I admit that I was still one of those people who had no idea what to say to someone else who had just given birth to a baby with DS, except “Congratulations on your new baby.” I was able to see what life was like for the whole family. The impact Finn had on his siblings was positive, not negative as is still proposed in the OB GYN offices when discussing prenatal Down syndrome diagnoses who say things like “Will this be fair to your other children?”. I was so proud of her oldest son for standing up to people to defend his brother and educate his peers. Watching Finn grow up over the years was a joyful experience for me … almost a guilty pleasure because I connected it with what *should* have happened for Tony. Watching The Morguesses has helped me to understand the difference between the realities and fallacies of raising a child with Down syndrome. I realized then that many of my feelings were tied to trauma I experienced as a child and fears that I had inherited from my parents.
How many women are as fearful as I was when faced with the possibility of Down syndrome? I think nearly all. What the world needs is to be on the inside, not the outside. I think that when people start realizing that it’s not a lot different from raising any other child, fewer people will have abortions. This is one reason I am thankful for Lisa’s blog … I really believe that you are saving lives when you show that your family is just like any other family! At this point, my husband and I are seriously considering adopting an orphan with Down syndrome. All of my children have “A” names. Wouldn’t it be something if we added an Anthony to our family?
I never thought much about disabilities beyond feeling sorry for the disabled and their families. I would see a family pushing an obviously handicapped child in a wheelchair and would think to myself, “What a shame to have to live that kind of life.” Or, I would think, “How sad for that family to have to deal with being caregivers for the rest of their lives.” I thought I was being empathetic and sensitive as my mother (certain irony here but that is for another discussion) taught me to be. “Don’t stare,” she would say. “Those people can’t help the way they are. Just be grateful that you are healthy.”
So I grew up and raised my own children with the same set of values. I became a teacher and was sure that I was treating people with disabilities fairly and justly like I had been raised to do. My life had never really been touched by this kind of “horror.” I had “normal” children and grandchildren. My life was fulfilled and I didn’t have to deal with “taking care of someone for the rest of my life.”
Enter the Morguess family. Joey was the first in a long line of Morguesses that would cross the threshold of my first grade classroom. The year he was in my class was the year Finn was born and the family received “the devastating diagnosis” of Down syndrome. I didn’t know Lisa at the time. I just knew she came to pick Joey up from school with a set of twins and their younger sister and an infant secured tightly in a baby sling.
Well, being the baby lover that I am, it did not take long for me to step outside and request a viewing of the package in the sling. I was taken aback. What I saw was a beautiful child but I quickly realized that all was not “normal.” I could tell by his eyes that he probably had Down’s. I just made some generic isn’t he cute comment and moved on, not knowing what else to say. I obviously couldn’t ask if something was “wrong” with the baby because my mother taught me that it was rude to ask. So I kept my mouth shut and silently felt great sadness that this lovely family of “normal” children was now saddled, “for the rest of their lives,” with this disabled child. This was also the year that Michael was diagnosed and treated for stage 3 colon cancer. That story, too, is for another time.
A couple of years later I had Annabelle and Daisy in my class. This is when I became close friends with Lisa. I had been reading her blog over the years, and discovered that she and I had so much in common. We both had rough childhoods with mothers that never should have had children, we were both voracious readers; she invited me to join her book club, and we both adored her children. So now I was on the inside of this family that was so unfortunate to have a handicapped child.
This is what I have learned from having the privilege of being an “insider.” I knew absolutely NOTHING about having a child with a disability. I was embarrassed at how ignorant I was about the subject. I love Lisa’s blog and read it faithfully so I was already learning quite a bit about the real issues involved with raising a child with a disability from all of her blog posts. But the one who really dispelled all of the myths I believed about Down syndrome was Finnian Hendrix Morguess, himself. He is a bright, energetic boy. He is “normal” for him. It is like watching a child develop in slow motion. He meets the milestones but not at the same time as a “typical” child. It is utterly ridiculous to feel sorry for the family. They certainly don’t feel sorry for themselves. Finn is an active, wonderfully adventurous toddler. What is “normal” anyway? Finn is Finn. He is not Down syndrome, he is not a disability, and he definitely is not a burden. He is a son, a brother, a student, and a child who happens to sport an extra chromosome.
As I learned more about the myths of having a family member that is not typical, I began to see that the biggest concern of the family is that others would not see Finn for who he is but instead would see only him as different. Kevin began his assault on the “R” word at the junior high level and I found myself wanting, no needing, to fight this battle as a teacher. Lisa gave me the movie Deedah, which I now show every year in my classroom. Along with the movie, I read the book, Junkyard Wonders, by Patricia Polloco. We have long, long discussions about embracing people’s differences and celebrating every life as necessary and important. The “R” word is a hurtful slur that should never be uttered.
I ended up having the twins for 2 years and now I have Lilah. With any luck, Finn is next!
The point I want to get across to my students is that everyone is different in one way or another. Finn is a person first. All the rest is just what we, as a society, make of it. I love you Morguess family. Thanks for letting me in!
~ Caryl Phillips