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Wednesday, June 29, 2016

Thoughts on the Down Syndrome Narrative

Someone left a comment on my previous post - Down Syndrome is a Blessing...or Is It? - that I wanted to reply to, but quickly realized the reply needed its own blog post.

She commented, "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."

I beg to differ on these points.

My viewpoints don't have to "align with the general viewpoint of others raising children with Down syndrome." I missed the memo that said now that we have raising children with an extra chromosome in common we all have to think and believe in the same things. No. We are still unique individuals with our own thoughts and opinions that we bring to the table. There is no rule book that says we all have to speak from the same script and we can't stray from the party line or have a differing view.

Examples: Parents choose different paths in education - public school, private school, homeschool, special needs school, full inclusion, partial inclusion, self-contained classrooms.

Parents choose different paths in therapy: No therapy, early intervention, school therapy, outside of school therapy, alternative therapy, traditional therapy, medical therapy, TNI, no TNI.

Just because I stated I didn't believe the diagnosis of the medical condition Down syndrome to be a blessing does not equate it to not being a 'good thing' in my life. I stated in the original post that yes, I have been blessed to meet the families I've met along this journey and acknowledge that I wouldn't have met those families if it weren't for Kayla having Down syndrome, but I still don't have to view Down syndrome itself as a blessing. There are plenty of 'good things' I have written about in this little blog of mine.

The expression "Down syndrome is such a blessing" IS a cliche. A cliche is used in article after article after article about Down syndrome. That doesn't make it not true for the people who are using it and I never said parents shouldn't feel that way about it; only that I don't feel that way - and that it is ok not to feel that way! It is used so often that parents who don't feel that way start to wonder if something is wrong with them (and clearly I'm not the only one who feels this way as evidenced by the commenters who agreed with me).

I'm well aware that the "good things" about Down syndrome serve a ... purpose to our community and those around us: That's the Down syndrome narrative. That's the narrative the community presents to society: How great, wonderful, awesome and perfect a Down syndrome diagnosis is.

I understand there is a need to change the narrative about Down syndrome from the negative image presented by the medical establishment. That's one of the reasons I've been blogging for 10 years - to show a glimpse into our lives; to show that our lives, that this, Down syndrome, is ok. We can receive a diagnosis we didn't want, and have a child - a daughter - who was so very wanted, and still pick up the pieces and continue with our lives. This blog was to show (yes, using a cliche and borrowing from that old TV show) ... life goes on. That has always been my advice, my mantra, my story, of raising a child with Down syndrome, "...life goes on." I don't hear of any other medical diagnosis being described as a blessing. My blog/viewpoint was never meant to show the world that Down syndrome is a bed of roses.

Oh, wait. Roses are beautiful, but those thorns sure can be challenging! Maybe Down syndrome is like a bed of roses.

The purpose of my blog was not to tell the world that raising a child with Down syndrome is a ray of sunshine and to never utter a word about the challenges that go along with it, but to share in those challenges, because there are challenges and there is nothing wrong with admitting that.

Parents of typical-developing kids are allowed to vent and write articles about how challenging raising their kids are: the terrible twos, the pre-teen angst, the rebellious teens, but parents raising children with Down syndrome aren't allowed that same grace of being able to say we face challenges, too? We aren't allowed to discuss the hard days, to express our worries about their future? That's all real life.

Because of the negative view that is already out there, "we" (the collective Down syndrome community) go so far on the other end of the spectrum to make Down syndrome perfect and desirable so all those cliches and sentiments get repeated verbatim in most articles. It is as if "we" are trying to convince society that our children's lives are valuable and worthwhile and everything is positive and happy-go-lucky with Down syndrome. We shouldn't have to present this image (although I understand the desire to do so); our children should be thought of as valuable and worthwhile simply because they exist, simply because they are human - we shouldn't have to justify their existence by saying how much of a blessing it is that they have Down syndrome. Down syndrome is a part of the human race, but the blessing and angels sentiments put them as other-worldly, or something more-than their typical siblings/peers. To me it almost seems as if it is dehumanizing them - stripping them of their humanity and putting them on a pedestal to be revered. They are no more and no less than the rest of society. They simply ... are.

Four years ago I wrote this guest post on the Military Special Needs Network for Down Syndrome Awareness Month. I encourage you (the commenter from the last post) to read it and then tell me  'how unfortunate it is that you're overlooking the damage done to people with Down syndrome.' It was a positive article, yet I didn't once have to say that having Down syndrome is a blessing ... but I still feel like it was effective at getting my point across in advocating for people with Down syndrome.

On the contrary, I have never overlooked the damage that has been done by society's negative views of people with Down syndrome. Search for Down syndrome on my blog and read some of the posts from the last 10 years. It's why I continue to host the "31 for 21 Blog Challenge" during the month of October. Here are 2 posts in particular where you may find our views are quite similar: Hope and Normalcy and Hope and Normalcy, Part II.

And as far as placing limitations on my daughter? Well, yeah. I'm not going to tell her she can be and do anything she wants to as long as she works hard and puts her mind to it, because she won't be able to follow in her father's and grandfathers' footsteps by joining the military. There will be limits. I do have realistic expectations for her and I'll encourage her and support her in her dreams and goals; I explain this further in E is for Expectations.

As my husband said to me, in much fewer words: "I wouldn't say Down syndrome is a blessing, but I wouldn't say it's a negative either. I'd just say it was challenging."


Stephanie said...

AMEN! To all of this! Michelle, I so admire you and it was a treat to meet you a couple of years ago at NDSC. Thank you for writing this post. It is perfect and it is true. Keep on keepin' on!

Mom24 said...

Great, great post Michelle.

Sharon said...

Well said, Michelle.

Jessica @Raising Joey said...

Amen sister!! Very well said!

Katie Green said...

I've given a lot of thought to your blog post since you wrote it and I agree mostly. I belong to a page, I run for Michael. This page is so full of children with different medical problems, genetic disorders, etc. i feel blessed that Mitchell has a diagnosis that is well known. The medical community knows a fair amount about Down Sundrome and the issues that come a long with it- I count this as a blessing. On the other hand, is having a child with Down syndrome a blessing? No more or less than either of my other children are blessings. I can't imagine life without any of my children, Mitchell included.

Anonymous said...

really liked your HONEST comment. And , I know how much you and Joe love both of your children. As you said, THEY ARE A TRUE BLESSING!! love mom

Nisa Dunmyer said...

This is awesome, and wonderfully, perfectly written. Love you!

Nisa Dunmyer said...
This comment has been removed by a blog administrator.
FlutistPride said...

I feel the same way about my giftedness. (Who even came up with the term "gifted" anyway?) It blesses me in some ways and curses me in others. I am an overthinker and giftedness gives me more stuff to think about. Getting help makes me feel lazy and stupid. I have acquired some very nice anxiety and depression because I overthink. Venerating people as perfect is just as bad as treating them like garbage.

Anonymous said...

My elementary age son with Down syndrome is not potty trained and doesn't really talk. He knows a couple of letters and numbers and no letter sounds. He's funny and I can't imagine life without him. He's my blessing because he's my son but I don't find Down syndrome a blessing at all. I've enjoyed reading your last posts on this topic. I completely agree with you.

Frau JoLou said...

Lots of people in the german facebook Down syndrome group agree with you, some not, but the most did
Martina (Jolinas Welt)

Camille de Fleurville said...

An Australian friend gave me the link to your blog and I am very grateful. I am not a mother. I am only the sister of a person with Down Syndrome. She will be 57 in three weeks and I am 58. I was having a career in the French ministry of defence when our mother died. My sister has always lived at home. I had promised I would take care of her. Therefore, she went to live with me in Paris. She made wonderful progress but she wore me out. Three years after her coming with me, I was down with a burn out and a deep depression. Career over. Job over. After a while, we could not stay in Paris and keep the house in the country. We are back in the country (South Western France); I am slowly recovering from depression. My sister is regressing. I am regressing. There is nothing here of my previous life.
As a sister, I do not find Down Syndrome a blessing and sometimes, I do not find people with Down Syndrome a blessing. I love my sister but quite frankly she has impaired my whole life. I have been rebuked from Down Syndrome French groups because I said so. I have taken to blogging to try and explain people that I do not live with an angel and that life is not always roses or, as Michelle says it is roses with thorns.

Amy said...

As a special education teacher and a person who has spent a lot of time with individuals with Down syndrome I applaud you as a mother for making this statement! The child is the blessing, not the diagnosis.

asianwithadhd said...

Good reply to that comment- saying DS is a blessing is most definitely a cliché. It sucks. Thanks for posting that

Anonymous said...

The military might not be an impossibility: