Rukai and Santa.

How Inclusive Education for Our Son With Down Syndrome Is Healing Us

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In much the same way as frost sticks to the windshield of your car in the winter, negativity can find a way to latch on to you, whether you like it or not, if you spend an inordinate amount of time surrounded by it. In the first three years of our son Rukai’s life – hell, preceding the first three, go back to “in utero” – down to all the medical guesswork and gleeful tick-boxing we were dealing with, there was little which didn’t fill my heart with sorrow, didn’t strangle my thoughts with worry. That fear, that negativity was like an overgrown ivy, and as such it led to poor health for us as his parents. A poor mental state, even poorer vision and all too often a lack of perspective.

It’s awfully hard to use peripheral vision from within a chasm.

Whereas some parts of society would have you believe that it is our child, born with Down syndrome, who was doing the suffering across those years, it was actually us, as his parents, in anguish – not from Rukai, he was a joy – but from having to fend off society and bad medicine perpetually marginalizing our beloved son. From all those conversations centered on “what he can’t do,” where we’d consistently be responding “the hell he can’t, shut up and watch him.”

It’s exhausting to have to fight all the time. And horrifying that at some point you actually tip over and get used to the challenge. Like a broken record, you find a “party line” that explains why statistics don’t define a life. We landed on something like:

A story not yet written cannot be told – particularly one which you do not own.

It was all so bleak. We were all so fearful. And I was entirely too angry. But that was then and this is now.

Much the same as a blast of garden hose clears out the muddle between paving slabs, in the winter of 2014 we enrolled Rukai into a nursery aptly named Sunshine. And these people could not have been more polar opposite to those eternally dark-minded, interfering medical professionals. Not only did they listen to me, but they listened to Rukai.

They watched what he could do, then they said “OK, what next? How do we go onward and upward from here?” And so too did Rukai, onward, upward. No labels. No negativity, just progress.

We went from medicine to education. From darkness to light. From fear to joy. From negative to positive.

And there, you have it:

Medicine searches for problems and seeks to correct a person’s disability. Education searches for potential and seeks to unlock a person’s possibility. I know where I want to spend my time.

And that Sunshine? Well, it was the very bridge from the one to the other. And just like that, I am not so angry now. Because now, we are here. Always moving. Relentless forward progress. Slowly but surely we arrived.

Maybe I’m too tired to be so angry. World-weary, it was recently said. Physically exhausted. Mentally used up. I’m looking at the calendar ticking off the final days in this year of amazing physical challenges that included hundreds of training miles run and two marathons. I’ve no idea where the mental tenacity required to get through one of those races came from, let alone two.

Then again, maybe I do…

When Rukai started primary school in September I knew things would be good in “big school,” but I had no idea just how good. A head teacher with practical experience of Down’s syndrome. A ridiculously inclusive school with the most amazing staff. And full time one-to-one support has meant Rukai has enough guidance to help him engage with the other children while progressing in his learning at his own pace. His support person knows Makaton sign language is an amazing blessing. Knowing she “gets” him is making me cry as I type this. I could not have possibly asked for more.

Yet, still I got more.

Earlier this week, I was able to watch him in his first school Nativity play, the incredibly sweet “Born in a Barn.” He stood (and sat and stood and sat) with all his peers, participating in his currently unspoken way, yet bursting with communication via Makaton signing. And he signs like a boss.

I wept to see him doing so much more than I was led to believe he would be able, from way back in that frozen hospital room as I tightened my arms around him to protect him from those equally cold, white-coated bringers of misery who stood before us. I expect to see him do amazing things now, but that doesn’t make it less moving; probably quite the opposite. Every milestone is Everest.

That is my son up there.

My son. My sunshine. My Rukai, in his school play. Included completely.

And the play ended. And they all stood. And in unison, they began to sing “We Wish You A Merry Christmas.” But they weren’t just singing… they were signing. They were all signing. Every last one.

By then, this hard, old, world-weary mom was weeping herself dry.

You see, I also cry when I’m angry. But I’m not so angry anymore.

It’s a long way on a donkey.

“It’s a long way on a donkey

It’s a long way to go

It’s a long way on a donkey

It’s a long and winding road.”

– From “Born in a Barn”

Follow this journey on Down in Front Please.

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Please Don't Assume This About My 'Bad Days' as Mom to a Child With Down Syndrome

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I am allowed. I am allowed to have bad days. Terrible days even!

Sometimes it’s a spilled cereal, lost my favorite shoe, dog ate my stuffed animal, I don’t want peanut butter and jelly for lunch, don’t make me wear my coat in 20-below freezing weather, 6-year-old girl tantrum kind of morning.

Sometimes it’s a stubbed toe, cat puked on the carpet, flat tire, traffic jam, coffee stain on my new shirt, scuffed new boots, forgot my wallet, long lines full of annoying people kind of day.

Sometimes it’s a forgot to take the trash to the curb because I work night shift and can’t remember what day it is, mountains of laundry, neglected dishes, overstimulated, hopped up on McDonald’s children, piles of homework, too much on my plate kind of night.

Sometimes it’s all those things and more. Let’s face it, life isn’t always sunshiny days and happy rainbow pooping unicorns. Things happen. Horrible, no good, terrible, very bad days will come. Sometimes it’s not even something that happened, we just wake up on the wrong side of the bed! It’s just part of life.

I am allowed to have bad days. I am allowed to have days where I don’t smile all the time. Where I can sigh and roll my eyes when I want to. I am allowed to have the kind of day you know was awful just by looking at me. I am allowed to have those kind of days without people assuming they’re bad because my child has Down syndrome.

I shouldn’t have to pretend like I live in a world where bluebirds always sing and pancakes don’t make my thighs get fat. A world where I’m afraid if someone sees so much as a chink in my mommy armor, they’re going to think it’s because of the number of chromosomes my son has in each of his cells.

Because you know what? On those bad days, the little extra dose of joy and laughter I find in my son, the little extra understanding and compassion he shows to those around him, the little extra tolerance and patience he allows me, the unabashed silliness that spreads like wildfire from him, can make those bad days all better.

Sometimes, it is my child with Down syndrome who makes the bad days good. Not vice versa. So guess what, I’m allowed to have bad days, and they’re not his fault.

This story was originally posted on Hand Me Downs.

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How We Shared Our Daughter's Down Syndrome Diagnosis With Her Siblings

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The moment we learned our daughter was born with an extra chromosome, my mind raced in many directions.  I was particularly struck by what Down syndrome would mean in the lives of her siblings, even though at the time she had just one.  As she grew, I watched her older brother dote over her the way he would have if she did not have Down syndrome. In time my lingering concerns about the impact her diagnosis might have on him began to slip away.

Kids are innocent and often quite intelligent. They know what they are taught, and they also absorb the world that surrounds them; how they are influenced helps shape how they view things and who they will become. It is a conversation I have shared with parents just like me over the last five years. Is specifically sharing the diagnosis with siblings necessary? I really believe it is a personal choice; however, I knew early in my daughter’s life that I needed and wanted to share her diagnosis with her brother, and that I would do the same when we had more children. To me, Down syndrome was not secretive. While it is not our entire life, it does play a part in our family.

A dash of creativity teamed up with some inspiration and a tag board helped create this special moment for my family a few years ago.

My stepson was 7 when we decided to tell him, and his sister was still a baby. Questions about his baby sister became more frequent – like why she had so many therapists and doctors’ appointments, and why she could not sit or crawl like her cousins. We often shared with him that kids, especially babies, develop differently and at their own pace.  But he knew something was different. Now, nearly five years later, we found ourselves facing similar questions from our youngest about her older sister.  Their questions have always deserved honest and real answers.

We wanted to empower our children with knowledge and positivity about Down syndrome, and encourage them to celebrate what makes what makes us all different. It was really important that our kids learn about the diagnosis from their parents first; that way they could be prepared with appropriate responses to conversations that may happen in the future.  It is my sincere hope that by doing so, we are building up their confidence to advocate with their whole hearts.

That is not to say we sugar-coated anything.  Our children understand that parts of having an extra chromosome are challenging, but they have become their sister’s biggest cheerleaders. And more importantly, they never treated her differently after learning about her diagnosis.

My daughter’s siblings do not label her by her diagnosis, like I was once worried about. They have awesome relationships – typical sibling relationships that include everything from annoying one another to playing together. Tessa, who has Down syndrome, has also been able to talk about her own diagnosis with her family, which has made for some heartwarming and teachable moments in our home — like if Down syndrome ever goes away, or if our dog has it, or how come only one of us was born with it.

There is nothing I would change, and I do not regret sharing with our children all that an extra chromosome brings to our party.

Since sharing our home video project on YouTube in 2012, we were contacted to create a story that has helped parents share what Down syndrome is with children in the home, classroom or elsewhere.  47 Strings:  Tessa’s Special Code” is a children’s picture book that explains Down syndrome in a kid-friendly and positive way that is easy to understand.  A portion of the proceeds benefit the Down Syndrome Diagnosis Network, an amazing organization that supports families who have just received a new diagnosis.  

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