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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!

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.

Anyway…

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

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.

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.

Reflecting on 2016

It’s a new year. A time to reflect back and plan ahead. Many times I think I spend time trying to plan ahead and make goals, but not necessarily enough time on the reflection. But how can you plan where to move if you don’t even know where you’re starting?

I’ve seen a lot of those “9 best of 2016” photos going around Instagram and decided to make my own. And it was literally impossible. As I looked through my pictures I was reminded of all the fun, sweet, special moments I’ve had this year. I realized that despite this year not feeling particularly eventful in a lot of ways, it was filled with the types of things I love the most: time with my family, simple days at home, learning and growing and living life together. I was reminded to be grateful for the two little lives that I have the privilege to raise. And I think that’s a good place to start as I reflect more deeply on this past year. Even when the details of life get challenging, the big picture, or grid of pictures, is one to be extremely thankful for.

One of my favorite bloggers at Modern Mrs. Darcy uses a couple of questions to reflect on the year and help pinpoint goals for the next. They are “What worked for me this year?” And “What didn’t?” I thought sharing the answers to those two questions would be a nice way to get into some of the more tangible details of my year.

First I’ll start with what didn’t work for me this year, that way we can end on the positives.

What didn’t work for me in 2016

In a word: pregnancy.

Now, please don’t take this the wrong way. Remember above: extremely grateful. We are very happy to be welcoming a new little boy into our family in a few short weeks. I’m referring more to the physical condition of being pregnant. This is a tricky line to walk, because I’m very aware of the blessing it is to be able to get pregnant and bear children. All I’m saying is, it’s hard ya’ll.

The year started with ambitions of ramping up my productivity. I wanted to plant a garden. Learn some new crafts. Plan a million activities for my kids. We were going to go on long walks, and learn to bake, and finally get all those toys in order. I wanted to write on this blog more regularly and do the types of projects that one blogs about. I had a couple ideas of crafts or design projects I could do to bring in a little extra income for our family and give me something to do other than all mommy all the time. I wanted to get more involved in some mom groups so my kids and myself could enjoy a little more social interaction.

And then I got pregnant.

It was a welcome, but somewhat earlier than planned, development. And I just wasn’t quite prepared for the change in plans it would require. Because pregnancy is draining. Pregnancy while caring for a preschooler and toddler took just about everything I had most days. Needless to say, my plans for the year went off the rails. My plans soon became keep everyone alive and fed until I can nap on the couch for a while. So yeah, 2016 has felt in a lot ways like I’m just trying to hang on and get through.

But there are a lot of things that did work for me, some more significant than others.

What worked for me in 2016

Kroger ClickList: Our local Kroger started offering online ordering earlier this year and I have faithfully used it every week since. I’m not sure how I would have gotten through grocery shopping with two kids every week for most of this year without it. Instead of braving the store every week, I can order my food from the comfort of my home. Many times my husband was able to swing by the store and pick up the order, but even when he couldn’t, it was much faster and a lot less hassle to strap the kids in the car, wait for the attendant to load up the trunk and head straight back home. Hallelujah for modern convenience.

Netflix: Many evenings I would fall asleep immediately, but for those nights when I wasn’t quite ready to go completely unconscious I would binge watch TV. Not the most productive or edifying thing to do, but there was no brain power left for anything else. The 9 seasons of “How I Met Your Mother” kept me entertained for quite a while. And now I feel like I’ve caught up on a decade’s worth of pop culture references.

Late night snacks: Poppy has only recently been agreeable to other people caring for her, so date nights have been pretty much non-existent for my husband and me for the past two years. But we have gotten in a habit of sharing a late night snack together each evening, and although there are many nights when we should really go to sleep earlier, the chance to have a conversation while our kids are asleep and quiet is what keeps our relationship alive. If we go more than a few days without those late night chats we start to notice in the form of more misunderstandings and out-of-sync feelings. Sacrificing sleep for more connection with my husband is one of the best things I do for myself each day.

Podcasts: I’ve listened to a lot of podcasts this year, mostly while preparing meals in the kitchen. It’s been a great way to get some adult voices in my ears on those days when most of the noise in my ears is, well, not coming from adults.

Extra shelves in the kitchen: Earlier this year, while decluttering the kitchen, I added four shelves total amongst a few of my cabinets. And it has made all the difference in the world in how organized my kitchen is. Pots and pans that I used to have trouble accessing are now at my fingertips, and stacks of plates that I used to have to shuffle around to get the size I needed are now all separated and have plenty of breathing room. It’s been months since I made that small improvement and I still feel a surprising amount of satisfaction each time I get out a saucepan.

Ivy Kids subscription: We got this subscription for Charlie for his birthday this year and I have been continually impressed at the quality of activities that come to our door each month. I hope to write a more thorough review sometime in the future, but for now, if you’re looking for a way to do more fun and educational activities with your preschooler without a lot of stress and prep, Ivy Kids is a great option to explore.

Kids that love each other: I’ve said it before and I’ll say it again, watching my two kids become friends is probably my favorite thing about being a mom of two. Sure, they have their squabbles. They’re siblings after all. But the way they make each other laugh, the way Poppy tries to join in on whatever Charlie is doing, the way Charlie randomly kisses Poppy on the cheek and says, “I love my sister.” I mean… how could it not make your day a little better? I look forward to how their relationship will grow over the years and it’s probably the reason I’m most excited to add a third to the mix.

So despite feeling in survival mode for much of 2016, it had some wonderful high points as well. 2017 will probably be another year of getting my feet under me, this time as a mom of three. Most of my loosely thought through goals for the year involve improving on household structures and routines, with the distant hope that getting a handle on the home will make it possible to pursue other interests someday. So keep an eye out. The frequency of my blog posts here will probably give a pretty good indication of how I’m doing with everything else. :)

Happy new year! And may your 2017 be filled with things that work for you.