Amy Beth

Tuesday, March 20, 2018

Future thinking on World Down Syndrome Day

One of the first things you have to come to grips with when you get a diagnosis of Down syndrome for your baby is your vision of the future. Most of us, whether consciously or not, imagine our children’s lives to follow a predictable arc. They have a lovely childhood, make great friends, make good grades, graduate from high school, then college, then find someone to marry, get a meaningful and lucrative job and have adorable children. Obviously, as a parent, your dream for them includes lots of success and very little hardship and failure.

In reality, none of us can predict the future for our children, intellectual disability or not. We can’t guarantee that they will be successful. If you’re really being honest with yourself, you probably have to acknowledge that your child will experience failure. That they will be lonely. That they will feel lost at times and wonder what the point of it all is. There will be many things that they will not be good at. All of these things are a very normal part of life. But when you’re holding that perfect little newborn, with all the possibilities and none of the limitations yet, you can imagine all the best. Over time, as your child grows and you come to know their strengths and weaknesses, you may edit your expectations. Your wildly creative and spontaneous little girl may not make the best lawyer. Your cautious and meticulous boy may not be cut out for high school sports. But that’s ok. You know their thing now and you can guide and support them in art classes or chess club. The loss of the “perfect” future is replaced by a more realistic and well-rounded vision.

When you’re given a diagnosis of Down syndrome (or I would imagine, many other conditions that fall under the category of “special needs”) that shift happens a lot faster. It can be rather jarring. As parents we are suddenly faced with all of the limitations at once, usually in the form of a very official looking medical fact sheet. But our baby is just a baby. We don’t know who they will become or what passions they will discover. We aren’t given a whole lot of information for the “pro” column of their imagined future. But we keep looking with faith and hope. Faith that every life is created for a reason and that our child will one day find their passion, purpose, and gift to give to the world. And hope that when they do, the world will be ready to receive it.

There’s a reason inclusion is the battle cry of anyone who works with special needs populations. I’m not sure that it’s so much to prepare the people with special needs for the real world, but to make sure the real world is a place that can be accepting and accommodating of the unique way they will interact with the world. Inclusion is needed not only for those being included, but for those of us doing the including. So when we are given the opportunity to be in a class or a work environment with a person with special needs, we know how to handle ourselves and interact in a way that doesn’t hinder anyone’s pathway to success. It would be a shame to miss out on all that people with special needs have to offer just because we don’t know how to receive it.

So much work is being done right now in the name of inclusion, from organized crusades to trailblazing individuals who show the rest of us everyday just what people are capable of. These people are paving the way for more opportunities and more acceptance of my daughter when she is gown up and ready to make her mark on the world. Here are a just a few places where I have found encouragement and examples to add to the pro column of my daughter’s future.

Ruby’s Rainbow – This organization provides college scholarships for students with Down syndrome. There are colleges across the country who are developing programs for these students to experience college life and all the education and independence that comes with it. Their biggest fund raising drive of the year is happening now if you feel inclined to support them financially.

Down Syndrome Association of Central Kentucky – Our local organization dedicated to supporting individuals with Down syndrome has a lot going on. I’ve been especially impressed with the stories I’ve heard from their “We Work!” program dedicated to training high schoolers for employment. Their recent class of graduates all have interesting and meaningful jobs or internships.

Brandon Lack Studio – I stumbled across this artist on Instagram one day and find him to be a inspiring example of the variety of gifts present in people with Down syndrome, just like in the rest of us. His art is lovely in and of itself.

Enjoying the Small Things blog by Kelle Hampton – A friend sent me a link to this blog when Poppy was first born, and I’ve been following along ever since. Down syndrome isn’t the only topic she writes about, but if you’re curious to get a peek into the life of a typical family who has a child with Down syndrome, this blog gives a pretty accurate picture. Hint: it’s mostly like every other family. :)

Happy World Down Syndrome Day!

Monday, February 19, 2018

Thoughts on the Olympics so far:

  • I wonder if I would enjoy watching normal American sports (football, baseball, etc.) if the commentators explained the rules and techniques of the game as thoughouly as Olympic commentators do. And then included lots of special interest stories about the players’s arduous journeys to get to this point in their career.

  • But then again, maybe the Olympics should lay off the special interest stories a bit. Let us be surprised and delighted when someone lands thirteen thousand quads, rather than slightly let down and embarrassed for them when an athlete doesn’t do as well as expected.

  • I could not be Sean White’s mother. Mostly because he is my age (which apparently makes him OLD by Olympic standards), but also because I would suffer from constant heart palpitations. “Be careful, dear! Don’t alley-oop so high!”

  • Also, my children will not become skeleton racers.

  • Curling… what is it like to be a serious player of such a silly looking sport?

Friday, June 9, 2017

A Kite Tale

See what I did there? ^^^ I’m 100% sure it’s been done before, but that doesn’t mean I can’t feel clever about it.


I can remember attempting kite flying a couple of times as a kid. And if memory serves me correctly, it was never successful. Either there wasn’t enough wind. Or it was too windy. Or the kite was a dud. I can remember my father running across the yard with the kite in an attempt to catch the breeze, and a few brief moments of exhilaration when the kite would rise up in the air… before it all came crashing down.

So when Charlie started requesting that we get a kite, I found the cheapest thing I could on Amazon and put it in his Easter basket. It would at least be fun to try. And finally, a day presented itself. Chris was home, (I realized soon after purchasing the kite that this would have to be a whole family affair, as I wouldn’t be able to assist Charlie with a kite while wrangling two other kids.) the weather was cloudy, but pleasant, and the weather app told us there was a 10mph breeze in the air. It would be impossible to fly a kite in our backyard, but we live down the hill from a patch of city-owned green space with lots of open grass to run and lots of open sky to fly. So we took the kids and the kite and made our way up the hill with high spirits and low expectations.

And you guys, it FLEW!

Like, for a long time!

Even Charlie was able to hold the kite up on his own!

Chris didn’t have any successful kite flying experiences in his childhood either, so we were both pretty thrilled.

We flew the kite on the hill until it was time to head home for dinner. All duly impressed with our little rainbow kite.

When we got home I asked Charlie how he liked flying a kite. He replied. “it was pretty fun, but not as exciting as I thought it would be.”

The child clearly needs to experience some kite flying failure in his life. I, on the other hand, spent the rest of the day singing kite flying songs.

When you send it flyin’ up there
All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite!

Oh, oh, oh!
Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Let’s go fly a kite!

  • “Let’s Go Fly A Kite” from Mary Poppins
Tuesday, April 4, 2017

Writing about Writing

I have been wanting to write more on this little blog of mine. But desire and reality are often two different things. First is the problem of finding time. Then is the problem of having thoughts.

Finding time is just a matter of logistics. Logistics can get complicated with three little ones around, but with enough planning and effort it should be possible.

Having thoughts is a different matter altogether. It should be helped by time, for sure. But there’s always the fear that my thoughts aren’t interesting enough. Or helpful enough. Or valuable enough for anyone but myself. So why bother? I find myself trying to write in my head to make sure it’s worth taking the time to sit down with the computer. I’m beginning to understand that this is perhaps backwards.

A couple of things that have helped my thinking on this recently:

First, this article from the Guardian – What writers really do when they write.

The author explains that most of writing is in the revision process. A writer really doesn’t get anything good written until they’ve written something bad and had some time to go over it.

“The interesting thing, in my experience, is that the result of this laborious and slightly obsessive process {of revision} is a story that is better than I am in ‘real life’ – funnier, kinder, less full of crap, more empathetic, with a clearer sense of virtue, both wiser and more entertaining.
And what a pleasure that is; to be, on the page, less of a dope than usual.”

And then I remember. I’m way less of a dope in writing. In person I’m not very entertaining. I have trouble expressing my thoughts clearly, much less profoundly. But while getting my real thoughts on a subject in real life could be painfully slow, in writing I can take my time, away from the expectant eyes of anyone else. I can muddle through a sentence, add and delete, try it a few different ways, and THEN share it with the world. I look much more graceful on the page.

And then, another excellent post on the Best Blogging Tips from Design for Mankind.

“Try, instead, writing for you. Write what you want to know. Write what you want to learn, just for the pleasure of having written it. Write because you love it, because you have something to explore and not because you have something to say. Publish it, if you’d like.”

And that, my friends, is the answer to my problem with having thoughts.

Because it’s not so much a problem with having thoughts. It’s a problem with capturing them. Thoughts swirl vaguely in my brain all day (and much of the night, thanks to frequently waking children). It’s in writing that I am best able to see what those thoughts really are. I can explore them and examine them and make them more concrete. I can see what I am learning and have yet to learn. And it is a reminder too, that these explorations are valuable. I don’t have to wait to share my thoughts until I have all the answers. Then I would never share. Instead I can share my thoughts just because I enjoyed thinking them. Maybe others will find it helpful in thinking their own thoughts. Maybe not. In the end we’re all just trying to make sense of our place in the world, and this is a practice that can help me do that.

So here’s to writing! Hopefully on a more regular basis. And to sharing. On occasion, when the writing is done.

Monday, February 6, 2017

Introducing Milo James

He’s here!

After what felt like a very long wait, our little Milo is here.

I think he looks like his brother. And I hope he has his daddy’s hair. He nurses like a champ and sleeps tolerably well.

His brother and sister are very sweet with him. Charlie often comments on what a cute baby he is and likes to hold his little hand. Poppy likes to pet his head and squeeze his toes.

I’m still wrapping my head around the whole three kid thing. But one thing I do know, my life that already felt full to the brim, would suddenly feel a lot emptier now without him. Just like the others, he’s made his own special place in my heart.