9 Reasons Down Syndrome Won’t Ruin Your Life
Hearing that your child has Down syndrome is life-changing. And in that moment, your life typically isn’t looking too good.
When I found out, at 16 weeks pregnant, that my son Wyatt had Down syndrome, I felt like my life was over. I cried for days, thinking about all the terrible things that we would surely have to suffer. I feared we would be doomed to a lifetime of suffering and misery, having to struggle through the terrible ordeal of raising a special needs child. The images I had in my mind were of a dumb, ugly child who wouldn’t be able to do anything for himself and would depend on us forever.
I’m embarrassed to admit that now, because it isn’t even remotely close to reality, but it’s the truth. When you get news like this, the first thing you think of is the worst-case scenario. And most moms who find out their kids have Down syndrome don’t often have accurate, up-to-date knowledge of what someone with the condition is actually like.
So now that my son’s been born, has my life been completely ruined? What is having a kid with Down syndrome actually like?
9. You Won’t Be Scared Forever
When you first find out the news, it seems like there is no light at the end of the tunnel. And all you can think about are all the bad things that can happen: heart defects, leukemia, thyroid disorders, infertility, Alzheimer’s, intellectual disabilities, and on and on. It’s so easy to get overwhelmed when you start to read about Down syndrome and see all of the health risks that come with it. Before you know it, you’ve convinced yourself that your baby is going to have a million health problems and you’re panicking and terrified.
But trust me: the fear doesn’t last forever. Eventually, you’ll see that light at the end of the tunnel. And day by day, you’ll start to realize that it’s going to be all right. Your baby is not going to have every single malady in existence, and there will be some point when you see that. Yes, there is an inevitable period where every negative emotion under the sun completely consumes you. But that doesn’t last forever.
8. He Will Exceed Your Expectations
When we were in the hospital, the neonatologist told me that Wyatt had low muscle tone. I knew from researching Down syndrome that low muscle tone was to be expected. I didn’t worry about it too much — sure, he might take a little longer to reach some physical milestones, but that’s what therapy’s for. He’ll get there on his own time.
Cue the next week, when Wyatt stunned me by rolling over within the first week of being born. At first I thought it was just an accident, but he kept rolling and rolling. Then, a few weeks later, he rolled over the other way. This wasn’t just advanced for a baby with Down syndrome, this was advanced for any baby.
My low expectations collapsed. And the funny thing is, I didn’t even realize that I had such low expectations. Just remember that even though you might have a baby with a disability, that doesn’t mean they won’t constantly find ways to surprise you and go above and beyond what you expect from them.
7. You Will Have an Amazing Support Group
One thing to keep in mind when you’re feeling scared and alone is that you’re not actually alone. There are amazing support groups out there that are ready and waiting to help you through it.
When I had Wyatt, my husband was serving in Afghanistan. I’d met the president of our local Down syndrome support group when I was pregnant and I sent her an e-mail giving her a heads-up that Wyatt had been born. In less than 24 hours, she had arranged for other moms from the support group to bring me food and gifts over the next three weeks until my husband came home. I hadn’t met a single one of these women, but they still all went out of their way to be there for me.
Having a kid with Down syndrome lets you join a whole new family of people who know what you’re going through, are ready and waiting to be there for you if you need it, and can show you just how great life with an extra chromosome can be.
6. He’ll Be Just Like Any Other Kid
Wyatt’s still a baby. Right now, at just under three months old, he loves to be held, is fascinated by his older brother, and has started figuring out how to make adorable little cooing noises. He also is very wriggly and active, and laughs when I stick my tongue out at him.
In short, he’s just like any other baby. And that will continue as he gets older. He’ll play, he’ll throw temper tantrums, he’ll play sports or learn music, and he’ll go to school.
Will he have some developmental disabilities? Probably. But that doesn’t mean that he’s going to be fundamentally different from any other kid. In fact, you may end up shocked at how similar they really are.
5. He Will Still Be Cute
I think of all the things I worried about before Wyatt arrived, this is the one that still embarrasses me the most. But it’s one of those things that is not an uncommon fear. What will he look like? Will he still look like his parents? Will he still be cute? Even after I got around to finally accepting the diagnosis, this was the one thing I continued to worry about. I was scared that he wouldn’t look like his dad or me, and that all anyone would see when they looked at him was Down syndrome.
I imagined going grocery shopping with Wyatt and having people give me the “what’s wrong with your kid?” stares. I pictured people seeing him and making ignorant comments. I had this idea that Down syndrome would be written all over his face and that everyone would be able to tell and would see him as some kind of freak. That’s not at all how it is, though.
In Wyatt’s case, he looks a lot like his brother. This means that he also looks a lot like his dad. Clearly, he’s still cute. And I’ve yet to have anyone walk up to me and ask me if he has Down syndrome. I do get plenty of exclamations from strangers about how adorable he is, though.
4. Down Syndrome Won’t Define Him
It’s really easy to define everything about your kid by the fact that he has Down syndrome when you first get that diagnosis. The way he might look, how he might act, who he’ll be. But Down syndrome is just one small part of who he is. He’s Ben’s brother before he’s the baby with Down syndrome.
For example, Wyatt seems to instinctively do things just like Ben. He’s started making the same pouty lip when he’s upset or angry that Ben does, even though Ben’s mostly stopped doing that. He’s starting to figure out how to suck his thumb and hold his right ear at the same time… just like Ben does. He watches Ben constantly and is starting to mirror him.
He might have Down syndrome, but it isn’t the entirety of his being.
3. Your Other Kids Will Love Him
When I was still pregnant, I remember being told that Wyatt was going to be a burden not only on us, but also on his brother. That infuriated me, but at the same time I couldn’t help but worry. How would Ben react towards him? Would he somehow know that Wyatt is different? Would he be jealous of the extra attention Wyatt inevitably will need?
The answers are no and no. Ben absolutely loves his brother. He laughs when Wyatt tries to talk to him. He tries to give Wyatt his pacifiers. And he rocks him in his swing. He tries to hold his hand and loves having a brother in general. Ben won’t ever know anything other than having a brother with Down syndrome, too, so it isn’t as if this will somehow negatively affect him or cause resentment.
And it isn’t just Ben who’s happy with his sibling with Down syndrome. Studies have shown that over 90% of people who have a sibling with Down syndrome say that they’re a better person because of them. Resentment? Not in these families.
2. You Will Be Happy
You might not realize it when you first get the diagnosis, but believe it or not, you will be happier because of this child. Families who have a child with Down syndrome overwhelmingly report that they have a more positive outlook on life.
The thought of having a child with a disability is so intimidating and scary. It’s hard to picture how a more challenging childhood could also equal a happier one. But it’s true. Far from being embarrassed or sad about Wyatt’s Down syndrome, I’m proud of it. I want to tell everyone who sees him, coos over how cute he is, and asks questions about him that he has Down syndrome. I almost feel like I want to brag about it because … we’ve got it pretty great right now!
It’s not even something I can put my finger on, but while it might sound cliched, it’s true. Having a baby with Down syndrome has somehow made me feel happier and more fulfilled than I felt before I had him.
1. You Can Do This
Around 90% of babies diagnosed prenatally with Down syndrome are aborted. Why is that? What makes mothers, who otherwise wouldn’t have aborted, decide that they can’t handle having a baby with Down syndrome?
It’s a common outlook. I’ve heard it firsthand — people I know have told me that I’m crazy, that I should have had an abortion, that they could never handle having a kid with Down syndrome. The truth is, you can do this.
I remember feeling a lot of doubt in the beginning. I didn’t know if I was strong enough to take all this on, understanding enough to deal with a special needs child, and so on and so forth. But as I said before, Wyatt’s a baby first. Having Down syndrome is not the entire sum of his being. And it’s the same for everyone else with Down syndrome, too. Yes, there will be challenges. But every child presents challenges and hardships. This is just a different kind.
So when you’re doubting yourself and thinking that you just can’t handle something like this, trust yourself. You can do this. And one day, you’ll be happy you did.
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More from Cassy Fiano:
Downs Syndrome can be a really tough deal….And its difficult for the friends and neighbors with “normal” kids too.
My good friend at work had a boy with Downs who needed multiple operations, a colostomy bag, and eventual removal of some intestines as they tried to get his digestive system more functional…they lost him after 2 years of endless stress and efforts, due to some complications, I’m not sure what. It was tragic, and gave me a huge sense of guilt…
Because somehow, I was blessed with a healthy beautiful child…stunning blue eyes blond hair and sweet disposition that makes everyone fall in love with him at first sight. At 6 he is becoming tall and tends to be the “leader” as he quite a bit more athletic than average… but he always maintains a gentle, careful consideration of other childrens feelings. He never teases anyone, fights over toys, bullies or shoves, he’s always playful and “positive” in a way that literally shocks other parents and teachers, and, honestly, embarrasses me…
Because he is kid I simply do NOT deserve. A kid with the looks personality and temperament I would never have ‘dared” to “ask for”. And one who I “did” nothing special at all in raising…I take no credit at all for the handsome, good natured kid he is, he is simply a miracle of Gods incredible generosity, and its difficult for me to accept that at times, because the “opposite side of the coin” means what, then?
That the others are somehow “less blessed”? That the Accounting of the Universe left them short, envious, denied the ease of health and normalcy I take for granted, the milestones and future we’d all prefer, while I look upon them with what? Pity? Relief that I am not in their shoes? I cant accept that.
I’m thankful beyond words for my lovely son, and I struggle with friends who have special needs children, because I’m afraid his “perfectness” being so “in their face” somehow hurts them inside, and the thought of that is upsetting to me in the extreme.
How can I call my son a Blessing, and a gift, and joke with co-workers about being “one and done” because I dont want to “tempt fate” after such a “perfect son” when they ask about plans for brothers and sisters, without those sentiments being an “insult” to the lives and challenges of the special needs kids at his school, and their parents?
Count your blessings and shut up is too selfish and cold.
Pity is far too condescending and rude.
So where do I go from here?
I understand how you might feel that way, but… just don’t. LOL. I am very sorry for your friend, as that loss is clearly horrible. But you still have no need to feel guilty. Look at everything I wrote. I feel the same way about BOTH my kids — extra chromosome or not — as you do about yours. And so do most parents of children with Down syndrome. Surveys have shown that over 90% of DS families are happy with their lives, still love their children, and wouldn’t change anything. Honestly, saying that your “perfect” child hurts parents of special needs children is a little insulting. Our kids aren’t broken or any less perfect to us than your kid is to you. We’re happy, we love our kids, so there’s no need to feel sorry for us.
Cassy,
“Honestly, saying that your “perfect” child hurts parents of special needs children is a little insulting”
Thats exactly what I was trying to say…the perception of what is so commonly called “Perfect” and “Lucky” and “Blessed” and how these “innocent” comments and general social perceptions/preferences are recieved by those who (and I do NOT mean this, I’m just playing devils advocate to illustrate my point) are “less lucky” than me.
The idea of ‘There but for the Grace of God goes I” on one hand sounds humble and thankful and honorable, but on the other hand, it suggests that God in some cavalier disregard for our hopes and dreams, “picked” some of us randomly to have burdens we probably would NOT have chosen to shoulder. In essence, its like saying Hooray for me, so GLAD I’m not you. And thats not honorable.
So, I’m troubled by how condecending that sentiment MUST be to other parents, even if I (we) dont mean it to be.
In other words, how dare I be so “thankful” for my healthy son, without the implicit suggestion is that others should be “sorry” for theirs…because that just feels so utterly wrong.
The thing is that tragic things like what happened to your coworker’s child can still happen even without an abnormality like Down’s Syndrome. You can’t necessarily blame the Down’s Syndrome entirely for that. Down’s Syndrome is a spectrum disorder like Autism. Children with it can display everything from extremely severe symptoms to almost none at all. So, you can’t just assume that the diagnosis alone is a harbinger of horrors to come, but I think that sadly, most people assume the worst because everyone wants that perfect baby.
For my part, I could relay the story of my husband;s coworker who’s son was born with an undiscovered open whole in his heart that caused his brain to not receive enough oxygen. By the time they discovered what the problem really was, they feared be was blind, some brain damage had been done and he had a bad case of water on the brain. They managed to repair the heart, but he was left with developmental delays and an awake apnea that threatened to smother him because he would literally breath all the air out of his lungs and collapse them if he grew too anxious (his apnea). Just becoming upset over a wet diaper, hunger or any other thing a baby gets upset over was life threatening. Thankfully, this is stabilizing and he may grow out of it, but no one knows what kinds of learning disabilities there may be.
This is a child that was otherwise thought to be perfect at birth. There are no guarantees. The best we can do is hope and pray and love our children for who and what they are. All have love to give in the time they are with us.
You’re insisting that only the X axis is infinite. There’s still the Y axis, which is infinitely perfect in a different direction and plane. And the Z axis…mathematicians tell us there are more planes than we can see.
I get that you are both stunned by the pure holiness of pocket lint being turned into a being you love more than anything or anyone else. But- God is infinite, and infinitely loving and blessing. God says ” be not afraid” b/c everyone is afraid in the face of the infinite.
You’ll love any other child of yours as another infinite blessing.
My husband was deathly afraid that he wouldn’t love any other children, b/c our first was so wonderful. We’ve got three. They are all wonderful, in very, very, very different ways. He’s a happier, more loving, more fulfilled man than he could ever have imagined. And, yes, more afraid- they might get hurt, they might die.
You don’t know that that child isn’t in wings of glory, face to face, held by God himself, right now. You don’t know that that child’s death didn’t bring a breaking of grace into the parents hearts. You don’t know any of that.
For all you know, what mars your child’s happiness is loneliness. Spouse was a lonely only. My dad was a lonely only. They were handicapped, socially, in some really basic ways.
Some people will use any opportunity to brag on their kids, no matter how tasteless.
I teach in a school where Downs-Syndrome, autism, etc. are the norm. They are beautiful, sweet kids without an ounce of guile. They have been a tremendous blessing to me and I am constantly humbled by their simple acceptance of the hand they’ve been dealt. May those who use their disability as an opportunity to be prideful repent of their pettiness.
Root ’83
What other people are going through doesnt invalidate your joy. You are indeed lucky. No guilt necessary. It’s called life.
There are far worse off people all across the world than parents of disabled children in the USA.
What a sweetheart of a baby!
Thanks for the pictures!
Lovely, Cassy.
He is absolutely adorable. Thank you for telling us about him and sharing your joy.
My wife is a Filipina and years ago she told me something interesting. In her country, having a child with special needs is considered a blessing from God. They believe that God wouldn’t give such a child to someone who couldn’t handle it, so the child is a sign of God’s favor.
Ah, now I have tears in my eyes. I believe it’s true, from the people I know with Downs. They’re a blessing to our parish-Treasures of the Church, as St Lawrence judged.
In the 1970s Sweden began using Downs syndrome persons as teacher’s aides in daycare centers. They seem to have an abundance of an “altruism gene” and lack of the “selfish gene”. It was a great arrangement for the schools (savings), the teachers and students, and of course for the Downs syndrome person who was able to lead a fulfilling life.
Progressive politics has too long dominated Americans with victimhood culture, and they seem unable to look at the glass half full anymore.
I also heard that too! And it makes plenty of sense from a Judeo-Christian point of view.
Larry J, I am from the USA and thanks to my Catholic faith, feel the way your wife does (maybe she is Catholic as well, and that is where this common attitude is). Only I didn’t feel up to the challenge when my daughter with Down syndrome first born, and said, “Why me?” a few times. But soon, Christina wove her way into my heart, and it grew by a few sizes as I learned to refocus my priorities; (like wanting a happy child in lieu of a neuroscientist) and listen with my heart to what God is telling me through her. He told me that all people, special needs or typical are loved equally by Him and we need to look beyond appearances to the soul. That’s where the love is!
I have a brother who has down syndrome…Teddy had a hard time standing so my dad put a wire from one end pond house to the other and attached a bouncy seat to it….Teddy would bounce from one end of house to other…..then dad would get Ted to stand in his hands and dad would lift him up so Ted could touch the ceiling….Ted is now 43….very healthy….takes care of himself except dad does his wash and cooks supper…Ted does all the dishes, vacuums gets the mail at post office, makes dads coffee….if it want for Ted dad would be in a nursing home….when Ted was born relatives, doctors…wanted him in a home dad and mom said no….Ted is the youngest of 12 children and my dad says he is the best of the bunch…..and of course he its because he takes care of dad on a daily basis….these children should not be aborted…..they r the easiest of all disabled children to care for and then enrich their parents
Kathleen,
Have arrangements been made on who takes care of Teddy when your dad & mom dies? That seems to be a major worry of disabled children’s parents.
Also Teddy loves to do word searches.watch’cops’ star.trek, John Wayne, cowboy movies and his beloved hockey team’THE PITTSBURGH PENGUINS’ and the steelers and pirates…but the hockey team its his favorite
Kathleen
Teddy sounds like a good kid, your description of him is sparking a memory of a special little boy I grew up with, so if you can indulge me…
There was a very “popular” family in town when I was in School…
The Lynch Family
The parents were very active in church, town politics, sports coaching and Boy Scouts. They had seven boys. All the boys were handsome, outgoing, natural athletes and natural leaders. All except Jimmy.
Jimmy was “special” sometimes referred to as “slow” but I dont know what the diagnosis was, if there even was one way back in the 60’s-70′s. He was a perpetual child in his happiness and wonder. Everything was “cool” and “neat-O”. He loved wind-up mechanical toys and could tell you the history of airplanes from the Wright Brothers to the Moon Landings. Just blurt out a word related to aviation, and he would recite its meaning and significance and connection to everything else in the universe.
He never forgot your birthday, and could easily tell you HOW he knew it, when he learned it, and what else was also going on that day. He never seemed to forget ANYTHING, and would recite memories of events he shared with you ten or fifteen years later, as if every moment ever shared with you was his fondest memory.
You grew up with Jimmy, and eventually grew past him, but he was always a child…8, 13, 30, who knew, because he was forever without anger, lust, greed or disappointment.
Everyone went to High school with one of his brothers, and the Lynch boys dominated the scene for a decade or more….. Football quarterback, track star, student president, most popular. Good boys, from a Good Family, who all became Very Good Men.
But 2 years out of high school, no one could remember WHICH Lynch boy was in THEIR class. Your older brother was with John? Your kid brother graduated with Joe? Who did YOU graduate with? Michael, Brian, Shawn? They were ubiquitous. Interchangeable.
No, the only one “everyone” remembered, was Jimmy. Because Jimmy never changed. You moved away, got married and had kids, but whenever you came home to visit, Jimmy Lynch was the same kid you remembered since the 5th grade, playing in the front yard, and he was happy to see you. His brothers were all good men, successful, respectable, accomplished, as expected. But Jimmy was exacty the way you remembered him…his voice and mannerisms, enthusiasm, happiness…a little rounder, and then graying, but still the same happy little boy from down the street, from “ home”.
Whenever you ran into an old high school friend elsewhere in the world, everybody would say always say the same thing: Have you been home lately? And if you said yes, the next question was always:
“So hows Jimmy Lynch doing?”
He was the ONE kid that connected us all.
I’ll bet Teddy is like that too
Your baby is just plain adorable what a cutie pie he is.
Love this article! My son Samuel, who has DS, is seven months old and the light of my life. Both of my boys are, but something about Samuel has changed my life dramatically. And I love #3 in your article. My older son (he’s four) LOVES his baby brother and thinks he hung the moon. And Sam lights up whenever Theo comes around.
By the way, your Wyatt is ADORABLE! I have a thing for babies with little hair–my Samuel is a baldy, too!
Thank you for posting this…..from the proud auntie of a little girl who just celebrated her 6th birthday this week.
She has never let Down Syndrome keep her from accomplishing great things, and I am sure Wyatt will do the same. (BTW, he is a handsome little guy.)
In my former home in Oklahoma everyone in town knew Calvin the paperboy. Born mentally challenged and club footed he nonetheless supported himself to a large degree with a paper route and selling copies around town.
Whenever the issue of Down’s comes up, something always occurs to me because of my background in anthropology.
Homo erectus, considered our direct ancestor, was physically a smallish modern human from the neck down, and half a man from the neck up, i.e. he had a cranial capacity about half the modern norm.
Yet he survived for ages in Africa without the aid of caregivers.
He was a tool user, tool maker, and there is some ambiguous evidence for use of fire.
Down’s kids have to be at least as smart as Homo E.
Beautiful post, beautiful little boy, beautiful family. Thank you for sharing.
When I was told my child could have Down Syndrome, I went through all the same emotions: terror, anger, etc. My doc packed me off to a geneticist for the amnio and confirmation. By then I was more afraid of losing my baby in miscarriage from the amnio than I was about having a Down baby. I refused the amnio and didn’t know until the day she was born whether she had Down Syndrome.
Today she’s 14 and a beautiful young lady. She doesn’t have Down Syndrome, but she has other issues that come with existing on this planet. As her mom, I do my best, just as Cassy is.
You courage is exceeded only by your motherly love. God bless.
I have a nephew with Downs Syndrome. He largely responsible for bringing his sister and brother back to a life of sanity and realism.
Sometimes you need adversity to understand the better things in life.
The subject could have been any of a hundred various birth defects. The sad truth is, before abortion “remedied” the problem of birth defects. whether manageable or catastrophic, families simply loved their children and did their best with the help of family and friends.
How is Downs Syndrome any more tragic than having a healthy blue eyed child who showed leadership qualities succumbing to drug addiction at 17? It seems to me our idea of what a blessing a child is is has degraded into little more than a competition between spoiled young parents in competition over who can show off the prettiest meat jewelry.
Very moving article, it brought tears to my eyes. Thank you for writing it.
“Ben won’t ever know anything other than having a brother with Down syndrome, too, so it isn’t as if this will somehow negatively affect him or cause resentment.”
That’s because bigotry is taught, not inherent. Your families great attitude toward Wyatt will teach Ben the same loving compassion and acceptance that you embrace yourselves.
May God bless you with patience on the bad days, and celebrate with you on the good ones.
“Ben won’t ever know anything other than having a brother with Down syndrome, too, so it isn’t as if this will somehow negatively affect him or cause resentment.”
That’s because bigotry is taught, not inherent. Your family’s great attitude toward Wyatt will teach Ben the same loving compassion and acceptance that you embrace yourselves.
May God bless you with patience on the bad days, and celebrate with you on the good ones.
Thank you for writing this Cassy, and may God Bless you and your family.
I spent a little time near several people with serious mental retardation (two were also spastic, and that is tragic) growing up, and two others that were ‘slow,’ though none had Down Syndrome. I’ll never forget my mother’s comment that ‘it could happen to anyone, and that difficult circumstances do not define a person.’ The two that were slow actually had a more difficult time; they *knew* they were different.
I’ve since worked with several ‘disabled’ people (MS, epilepsy, wheelchair, etc), and have seen for myself that it’s what’s on the inside that counts.
People are not defined by appearance, natural abilities or talent; we are defined by our chosen thoughts and actions.
BTW, your kids are cute!
Very Respectfully,
The article does not mention how much higher the risk of Down’s Syndrome is in older mothers. She still looks quite young, so can expect to be around for a long time to look after her son, as presumably her husband will as well. People in their 40s or older who receive a prenatal diagnosis of Down’s Syndrome unfortunately have to consider who is going to be there to continue to provide the care their child will probably continue to need all his or her life, when they are no longer around or able to provide it, particularly if this child has no siblings. Keep in mind this is not just physical but emotional care. One thing every parent or potential parent knows instinctively is that no one else will ever, can ever, love their child as they do. Mentally disabled adults are often devastated at the death of their elderly parents and never fully recover from the loss. There is a heartbreaking French film called “The Eighth Day” about “George”, a bright, lovable middle-aged man with Down’s Syndrome and a non-disabled man the same age who become good friends. George has recently lost his mother, who raised him alone, and he is deeply depressed as well as confused and angry. As much as his friend tries to help him, he commits suicide in the end. Not a happy scenario for a 40-something potential parent to consider, and people do look that far ahead in the future when making decisions about continuing a pregnancy. Maybe they shouldn’t, as the author counsels, but that is easier said than done.
That is definitely true, and it’s not even specific to age. I worry about that same issue, because God willing we’ll outlive our children. But really, even if your child doesn’t have Down syndrome, there’s still no guarantee that nothing might happen in the future that could require them to need extra care. There could be a car accident, cancer, anything. I would think that, Down syndrome or not, such a scenario would need to be considered before an “older” couple decides to have children.
I work with disabled children. The Downs syndrome kids are the most loving kids anywhere and perceptive too. I happened to be seeing a physical therapist and we were co-treating a downs syndrome 3 year old and he sensed there was something between us the first time he saw us. He walked up to us (we were both sitting on the ground) and put his hands on the backs of out necks and tried to push our faces together as if to kiss. We both were amazed, no one else knew we were seeing each other, but he did. Downs kids are pure gods love.
W
Once upon a time, I had a summer job at a Lutheran summer camp where we had one session of summer camp dedicated to the developmentally disabled. (it’s this camp, and a lovely place it was too, when I was a teenager – ( http://www.lrcchome.com/about/camp_yolijwa.ph)p I think it was the usual Camp Yolijwa curriculmm with some special consideration to those campers. All that they did for us counselors was to have brief training session about mental retardation,and then they let us go.
I think most of the campers from that session were from a Lutheran facility that specialized in that, but three of the campers came from their families. All of them were amazing. They were – in the main those who didn’t have severe emotional problems as well – so very happy and able kids. They seemed to operate on the level of an early teen, about fourteen or fifteen. One who lived with his family was a high-ranking Boy Scout. He was a champion wrestler for his high school, he was so responsible that we began to account him as almost a counselor himself. The other thing – I taught arts and crafts, and I saw that the kids in my classes grasped things like making bead rings almost at once. For normal kids, I had to explain and demonstrate over and over. For the special camp – they caught on, with the first explanation.
The ones without severe emotional problems – they were so happy and cheerful, and able, within certain limitations. No, they would never win a Nobel prize for science. But they would never do great damage to the world, either. They were OK, and the people near them loved and protected them.
What a great article. I wouldn’t trade my Samuel, which means “asked of God”, for the world. He never fails to exceed my expectations, and for the most part, I’ve always dealt with him the same as my other kids.
It was tough to hear the news, because I had already lost one child with DS, so I figured it wouldn’t happen again. So much for that assumption. But after the initial shock and tears, I focused on DS success stories, like the actor, Chris Burke, and a friend gave me a book about Randy Chang, who was born with serious physical problems such as the intestinal problems noted by #1, but has since gone on to become a college graduate and a concert pianist. I remember being scared and uncertain at first, but there is a ton of support available, and the neanderthal assumption of institutionalization is thankfully a part of the past.
I know kids with DS take longer to get there, but they do, eventually, do it, and they do it without the clawing, scrabbling nastiness so prevalent in today’s world. Our kids are pretty much love personified; they just don’t seem to have what it takes to be mean, conniving, spiteful, malicious, or deceitful, which typical children seem to learn all too readily. It is such a tragedy that the vast majority are aborted without having a chance to share their special gifts.
Here are 9 realities about my 8 year old son I didn’t expect when he was born:
1. He is a learner especially in things that interest him. Show him any NHL team jersey and he will tell you the team and city.
2. He is the favourite kid in his WHOLE SCHOOL. He is a celebrity when he walks around the halls, with all the teachers and yes, even the cool 8th graders, taking the time to say hello to him.
3. He imparts qualities in his siblings I could never have taught them. They have become such generous, understanding and tolerant kids.
4. He loves sports, imaginative play, board games and all of the other things typical boys like.
5. He is compassionate and acutely sensitive to others feelings. He has a sixth sense for people who are sad and is generous with his quiet presence.
6. He is happy with what he has and is not jealous or angry if someone else has more.
7. He makes his family proud.
8. People enjoy being around him, even the sibs teenaged friends.
9. He has been a pleasure to raise as he has charted his own course, not fulfilling the sad predictions those early books I read made.
Oh, Cassie – he is absolutely adorable! Welcome to the wonderful world of DS parenthood.
Am oldest of 5 girls. I have Cerebral Palsy and #4 has DS. Doctors told Mom to institutionalize us both, repeating all the standard horror stories of never walking, never talking, not having a life, etc.
My DS sis has always been a blessing to our family, and after my Mom, was my next best teacher that I could overcome anything. Now I have five kids of my own, and even though I am in MENSA, and am a scholar and writer, and my sis still has the mind of a 4yrold, she is, at 49, solid adorable proof that love and empathy and kindness beat intelligence and ‘mad skills’ hands down.
If you have a DS child, you have a gift. Even when it’s hard, it’s a grace.
Wyatt is so cute! As is his brother. That is nice they are close in age, they will be best friends for life. Best wishes for your family. Thank you for sharing your insights.
Wow, what a beautiful article! I have a friend with a child that has DS and he is the sweetest kid. He is also like all their other children, running and playing and causing havoc and giving lots of love. It is funny how what at first seems like a tragedy turns out to be a blessing. I just finished reading a book called Wrapped Up: God’s Ten Gifts for Women http://www.teresatomeo.com/Books-And-Media/ and the authors talked just about that. How what you think will ruin your life, or make it drastically harder, leads you to places you never thought you would go. And those places, while you may have not chosen them on purpose, are important in your life and bring you closer to God. Just Lovely. Thanks so much for writing this.
God Bless you and your family. I remember when I was pregnant with my first child and the doctor wanted to test for abnormalities in the first trimester, so that if they found some, I could abort. My husband and I discussed it and decided that the baby was “real” to us and that if God saw fit to give us a child with special needs, then he would also give us the grace to handle it! That is the attitude I had then and the one that I maintain to this day! Some times the hard stuff is the best stuff!
Great article, well thought out and very wise for a mom who is just 3 months into her journey. I was especially touched by your last point. The “you CAN do this”. You are so right. No mother who has ever had a child with a difference thought raising a child like that would be easy, or something they would like to do.
Interestingly, if you were to bombard any expectant mother of the facts of raising any child, she would certainly rethink things. ALL children are hard work, make you tired, frustrated, feel hopeless and incapable at certain points. That’s part of the reason everyone respects mothers, for all the stuff they think they will struggle through, yet conquer. Mothers are the ones who face some form of hardship or struggle everyday and come through a tiny bit wiser, stronger and resolute. That’s the magic of moms.
So yes, any mom can have a child with Down syndrome and be exactly the person that baby needs.