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Wednesday, June 22, 2016

Down Syndrome is a Blessing ... Or Is It?

There are a handful of sentiments and cliches that are used over and over in the Down syndrome community that it almost feels as if one is expected to agree with and regurgitate the same information. Once you join the community of parents who have a child with Down syndrome it's easy to find yourself repeating these sayings as if on automatic pilot.

I've blogged before that I just don't identify with most of these cliches such as "since having a child with Down syndrome I've learned to be more patient."( Nope.) "I've become a better person since having my child with Down syndrome." (Again, nope. I don't believe I was such a horrible person before I had my daughter that I was given a child with Down syndrome to become a better person.)

Another sentiment I see oft repeated in articles is "Down syndrome is such a blessing."

This one makes me pause and think. Do I agree with it? Or am I again on the other end of the spectrum with my feelings?

Yes we've been blessed to meet a multitude of families we otherwise wouldn't have met if Kayla didn't have Down syndrome. On the flip side of that I can say we probably would have been blessed to meet a whole group of different parents and families if Kayla didn't have Down syndrome.

But is Down syndrome really a blessing?

I'm not talking about if Kayla is a blessing; she is, but not because she has Down syndrome. I've said it before: she's a blessing simply because she is my child and she exists - as much as Lucas is a blessing to us. For me it has nothing to do with Down syndrome.

Down syndrome is a medical diagnosis and if I separate my child from the diagnosis and just talk about Down syndrome, by itself, would I call it a blessing?

No. It's no more a blessing than Kayla's diagnosis of ADHD, or her diagnosis of Celiac Disease. It's no more a blessing than Lucas' diagnosis of allergies, or his diagnosis of asthma. They are all medical conditions and I wouldn't count any of them as blessings. Why? Why would they be classified as blessings?

That's not to say I'm in denial or haven't accepted my child as she is: I have. She was born, she was diagnosed, it's a part of our lives.

Is Down syndrome a blessing when it brings with it issues like Kayla will probably never be able to drive because she just won't have the quick reaction time, or ability to stay focused, that driving requires?

Is it a blessing that she could be more easily taken advantage of in more ways than one?

Is it a blessing that she can't fully read social cues?

Is it a blessing that concepts such as money and time-management, which come so easily to her brother and other typical same-age peers, do not come as easily to her?

Is it a blessing that telling her she has 15 min to get dressed and be out the door is the same thing as telling her she has 2 hours?

Is it a blessing that she will likely need some kind of assistance to live as independently as possible? And living independently probably will not look like it did when I lived independently.

Is it a blessing that the provisions we have to make for her future are completely different than what we are able to do for Lucas?

Is it a blessing that a law had to be made to allow her to have another avenue of savings because if she has over a certain amount of assets her eligibility for assistance will be reduced?

Is it a blessing that she can't simply own property and a checking account and savings account and do with her money what she would like because it all has to be analyzed and scrutinized to make sure she doesn't maintain more than that magical limit?

Is it a blessing that she can't keep up with her same-age peers academically?

Because I don't view it as a blessing does this mean I wish she she didn't have Down syndrome?

Most days I don't think about Kayla having Celiac disease, but some days I wish she didn't have to deal with a specialized diet.

Most days I don't think about Kayla having ADHD, but some days I wish she didn't have it so she could concentrate better on academics.

Most days I don't think about Lucas having allergies, but some days I wish he didn't have to take Zyrtec and Flonase every night.

Most days I don't think about Lucas having asthma, but some days I wish he didn't have to make an inhaler part of his morning routine.

Most days I don't think about Kayla having Down syndrome, but some days, yeah, some days I wish she didn't have the deficits that come along with a cognitive disability. And there is nothing wrong with admitting that most days I don't give it a thought, but that some days I don't like the medical diagnosis of Down syndrome very much.

It's a diagnosis and I think of it like their other diagnoses. Yes it's quite a bit more involved than allergies, but it's a diagnosis nonetheless and I don't consider it a blessing any more than the other diagnoses.

Down syndrome isn't a blessing, but Kayla, she is a blessing with or without Down syndrome.

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Frau JoLou said...

Yes, Yes, Yes!!!!!
I´m 100% with you and had to share this in the big German Down Syndrome Group, I hope they understand
Martina (Jolinas Welt)

Thorsten Klein said...

They do. And they share your opinion. Great!

Kristin said...

Yes Yes Yes!!!! To all of this.

Cindy said...

I like this. Well said!

Anonymous said...

Really like your personal thoughts on Kayla and Lucas THEY ARE A BLESSING!!! and the different aspects of dealing with any number of medical diagnoses in their lives. never easy/ challenges yes, along with frustrations. Love Mom

Nicole O'miela said...

I'm sorry that your viewpoints don't align with the general viewpoint of others who are raising children with Down Syndrome. It was kind of sad to read. DownSyndrome hasn't been a blessing (a good thing) in your life. Honestly, calling the expressions made by others about their experiences, DS being a blessing in their lives, "Cliche" was pretty insulting.
These expressions and experiences of all the good things about a DS serve a very important purpose to our community and those around us.
Enough damage has been done to people who have DS with negative talk about their diagnosis. This is something that I think you are overlooking. And it is unfortunate.
My oldest daughter has asthma, and yes I do wish she didn't have that. The numerous times we've fled to the emergency room in the middle of the night when her rescue inhalers didn't work. Sucked. She could die from asthma. It takes one real bad asthma attack to put a person in critical condition. A close friend of mine died this way. Asthma is awful. But it doesn't come along with societal stigma or discrimination for that diagnosis.
The diagnosis of DS is not deadly. It is absolutely a mixed bag that is different for the individual.
Is everyone with DS going to be able to drive? No. I know many people without DS who don't drive. Does DS sometimes make a person slower than others, maybe slower to get dressed? I know a handful of people of the top of my head who are never on time, and they don't have DS.
Does it really matter if a person keeps up with their peers academically? I never did, and I don't have DS.
About the checking account/money thing, I know several people with DS who are adults and handle their own finances. How old is your kid?? I don't know any kid who is good with finances. Give her a break!
My biggest question for you is why are you placing so many limitations on what your child may or may not do? To me, this is the absolute worst thing you can do to any child, let alone a child with DS. How are you so sure she won't do these things? Why would it be a big deal if she never did these things? Many people without DS don't do these things, but it's only not a blessing because it's linked to the diagnosis of DS?
It's fine that you don't see your child's diagnosis as anything more than that of your other children's diagnosis. But you certainly didn't list anything about an asthma diagnosis that negatively effects a persons abilities. Like risk of sudden death. Unable to play high intensity sports. Certain weather and climate effects breathing. Being sensitive to certain foods. ( you kinda mentioned allergies). I can see many reasons why I don't like or want my kid to have asthma. It's deadly!!
I don't have one good reason that I'd ever do away with my sons DS. Not one reason. He's two, and the impact he has had on our lives and others around us is very real, and absolutely not "Cliche."
Since having my son I have changed, and I was a pretty damn good person to begin with. I have such a deeper compassion for others, not only with DS, but with other (much worse) life struggles. It's on my mind all the time.
Never would I ever overlook the mother struggling to get their Autistic child to calm down, never will I ever overlook the bully saying something negative to a child because they are different. Did these things bother me before, yes. The difference now is that I take action. Like I'm responding to this post now. Sticking up for those of us who are having a pretty amazing experience with Down Syndrome in our lives! Because of the diagnosis, and the wonderful people who happen to have it. It's an amazing journey that not everyone gets blessed with. In my book it is, and has been a wonderfully blessed journey so far, and I'm only two years in. Will my son drive? Frankly I don't give a damn, I'm sure he will be a master cycle man if he wants too.

Mike said...

It's all about me.

Anonymous said...

Never apologize for your feelings. That is what makes you human. I can't believe others commented that you should have felt it was a blessing.

I think I could have written this same post but substitute down syndrome with autism. As much awareness and a coming around more with acceptance for disabilities in general, nothing can take away my fears of who will take care of him when my husband and I are gone. I know his sister will step in but the fears are real--the daily struggle is real.

I still love my son with or without autism but I don't and can't love autism. Thank you for your honest observations.

momtojesse said...

Nicole, with all due respect you have been on this journey for all of 2 years. Michelle has been on this journey a decade longer than you. I myself have been on this journey for 11 years and I have to say this blog post is pretty spot on. IT IS OK to not be all sunshine and roses about Down syndrome. This is not something you will learn as time goes on. I'm not saying DS is all bad, but it is no walk in the park either. The struggles us parents go through as our kids get older get tougher to deal with as well as the struggles our kids go through. Don't get me wrong, I love my son and I wouldn't trade him for the world, but I do wish things were easier for us sometimes. I'm sorry you feel that Michelle was wrong in her blog post, but I'm here to tell you there are far more many parents who can be totally honest and say you know what this sucks.

Michelle, you are dead on with this post. You have every right to feel the way you do because you have been down this road for quite a while now. It's so refreshing to have posts like these because I truly believe they could help parents who are struggling thinking wow am I the only one who thinks this sucks. Yes there's good, but there's also the bad and we need to focus on that too so that we help other parents know it's ok to feel this way.

Sharon said...

Okay, I've been doing this Down Syndrome mama gig almost twice as long as you. Laura is 24, soon to be 25. And I totally get it.

A cliche is defined as "a phrase or expression that has been used so often that it is no longer original or interesting; and "something that is so commonly used in books, stories, etc., that it is no longer effective". And both definitions fit exactly MY feelings about the cliche calling Down Syndrome a blessing. Honestly, I think as a community of people who care for someone with Down Syndrome, it is time to raise the ceiling and come up with something new to tell the world.
From a Christian viewpoint, and from reading Christian literature, a blessing is defined as "being granted special favor by God with resulting joy and prosperity". I think both of my girls are a blessing to me. They both have given me joy, and a type of prosperity.
I have learned so much from being a parent of a daughter with DS, however, I still say it hasn't "blessed me", using the definition I shared, which is from a recent Bible study.

Now, here we are again, this is a matter of opinion. And I absolutely can not say what the opinion is of the majority of parents raising babies, children and adults with Down Syndrome. I can say that I have smiled and nodded my head in many a conversation when that statement has been made. I don't agree with it. I just chose not to address it at that time. I understand, I think, the sentiment behind the statement, I just don't agree.

And now here is the crux of the issue. You know my opinion, and you know Michelle's. I know many parents who disagree with how I feel. And we still remain friends, respecting our differences. The important thing is to not allow the infighting over semantics to affect what we tell the world about life with people, who just happen to have Down Syndrome.

Stephanie said...

Nicole: It's pretty clear that this is your first time visiting this blog. If you read more, you'll learn that Michelle is a fantastic advocate for Kayla and for others with DS. Her children are her blessings; she isn't denying that or making light of that. I think most of us would agree that our children, with or without disabilities/illness/conditions are blessings to us.

But respectfully, you have walked this path for 2 years. I'm not discounting that. I was there once too. I am now the proud parent of a 7 year old son and I have learned some hard truths in those years. I have a child that does not speak and likely never will. He just learned toilet training this year. Being included in school has not come without flies in the ointment and our school journey has been a breeze compared to others that I know.

I'm not saying these things to upset, belittle, or scare you. I'm saying these things because they are real. They are part of Down syndrome in my life. So is that a blessing to me? No. No it's not. That's the real hard truth.

I know many parents in the DS community and Michelle is one that I have the utmost respect for and turn to for advice. She has never put limits on Kayla; rather she goes out of her way to make sure Kayla has life experiences. Her discussion about her concerns for the future are what many of us think about. If you aren't considering those things, well then, you aren't looking at the bigger picture in my opinion.

I love my son more than anything else in the world. But not every day is rainbows and unicorn farts. You will learn this as you continue this journey. We don't all have to agree on things because we have a child with Down syndrome. I encourage you to read other blogs and learn from others who walk alongside you. Allies are more important than being right.

FlutistPride said...

Even for seeming inherent advantages, the notion that it is a "blessing" is problematic. I am autistic and gifted. I also have ADHD, anxiety, and depression. None of them are total blessings and none of them really are total curses. Each of them comes with a bit of a blessing and a bit of a curse. I treat these things like my temperament (choleric-sanguine), cognitive processes (ESFJ), and internal motivations (872 8w7 7w6 2w3). I work with them and use them to my advantage.

Is it a blessing that I cannot eat certain foods without gagging or vomiting?
But is it a curse that I am passionate about the most random things?

Is it a blessing that I am plagued by my inability to create a perfect world?
But is it a curse that I am able to explain my values and principles in ways that others understand?

Is it a blessing that I sometimes cannot concentrate on anything?
But is it a curse that, when I can, I am immersed in the experience, feeling every single thing in the best of ways?

Is it a blessing that I can get worked up over nothing?
But is it a curse that I am a tenacious go-getter with a contemplative conscience?

Is it a blessing that I can wake up and feel no pleasure?
But is it a curse that I am compassionate towards people others would not even stop to think about?

I take the good and the bad. I am superior to my peers in some areas, inferior in some, and equal in others. If you envy the talent of others, remember that talent is worse than mediocrity. The line between friend and fan blurs. The fear of impending collapse hangs over your head like a lead block supported with a single thin thread. Everyone envies you, but you're never sure why. You cannot see why everyone thinks you're so great. You have everything in the world, but you can't enjoy it. What then is the point of having everything?

Think of that the next time you envy another person's measurable achievements. They might not enjoy it at all despite the smile in the photo.

Amanda Gilbert said...

This. 150bajillion%.

Anonymous said...

Your kid is two. Wait till he's older and stronger than you and can't control his temper at times and lacks effective communication skills despite countless hours of speech therapy and watching HUNDREDS of hours of signing videos with him.

It's NOT a blessing. It's a huge pain in the butt most of the time.

To worry EVERY single day about his future. About OUR future. To have to stop when thinking about making what used to be NO problem-a spur of the moment hike or trip to a mall. Can't do it. Too many variables.

I, too, used those talking points and cliches early on.

6 years in though it sucks. It's not the life I wanted. His brothers don't deserve the burden of likely having to take him in when his mother and I are gone.

Despite all I'm saying we're ABSOLUTELY still his biggest advocates.