Category: inclusion

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Middle school is coming… again.

As we ease into summer and begin to rest and recover from this past school year, I keep thinking about the next. A more typical school year for sure. And that makes my heart rejoice.

But it also makes it ache a bit.

As hard as the past 15 months have been, some things have been easier. I have had to worry less about many things. As the mom of a preteen with Down syndrome, it is no surprise that middle school can be the beginning of a hard season, as it is for many kids. Gone are the days of elementary school when everyone is together because, well, everyone is together. As it should, middle school brings growth in new ways and things change. And while he just finished 6th grade virtually, this fall will feel brand new. That makes me worry in a new way for my Ian.

Will he have a friend to walk with in the hallway? Someone who wants to walk with him? I am not concerned about him getting where he is going — I am worried about him getting there alone.

I think back to when Ian was just 24 hours old. A surprise birth diagnosis of Down syndrome, whisked off to the NICU, being diagnosed with a heart defect and being told he would need open heart surgery within weeks — all within 24 hours. After our visitors headed home for the day weary for us, we were left alone in the cool, dark corner of the NICU with curtains drawn around us with Ian on my chest. I whispered to Jason that if we could stay like this, the three of us tucked away in this little corner away from the world, we would be ok. I don’t think I had spoken a more pure truth in my entire life.

And I still feel this way during these times of transition when I am so scared for what comes next. If only we could be tucked away in the corner away from the rest of the world. Then we would be ok.

And even though we would be ok, that is all we would be — ok. Because that is pretty much what these past 15 months have been — us tucked away from the world. We were ok but not good. Or at least not as good as we would like to be.

Then, a perfectly time reminder today that I am not alone in all of this. I attended two sessions at the virtual National Down Syndrome Congress Convention. The incredible Terri Couwenhoven helping me navigate the world of dating and relationships as we support Ian having a life full of what we all want. Most importantly, giving him the dignity of a life of his own choosing. And a gentle reminder from her to have friendships in the inclusive world and also in our special needs community to make sure our kids have a big, safe place to land. So they are never alone.

Then wise words from Dr. Andrew McCormick on planning our kids’ transition into the adult world. Intentionally planning and empowering, but not doing it alone. That instead of using the word “disability” we should focus on diversity. That people with disabilities — and all of us — contribute to the diversity of the human condition. I love that because, at least to me, the word “disability” feels like a negative. Or maybe it is seen by others as a negative — that disability is synonymous with being seen as incapable.

He focused on bringing value. He shared how text messages were actually developed by the deaf community to support their ability to communicate. And that brought value to all of us. How we need to work together to help our kids get to an adulthood where who they are brings value to all of us.

Isn’t that how it should be? That each of us brings value to others?

Big emotions and ideas and dreams today — a meaningful adulthood, a partner, empowered to have the life he wants. It starts today, really. I know that. Day by day, month by month, year by year. But the mom in me wants to know that her boy will have friends to eat lunch with in the fall. That he will never feel like he does not belong. That he will never feel “less.”

And I know that being tucked in that corner is safer. That we would be ok. But I also know that that is all we would be — ok. And I want more than ok for Ian.

It will not be easy for Ian. It is not easy for many kids, or many of us really. But I think the difference when you have a child with Down syndrome is that you KNOW some things will be harder, that some things will be different. And gosh, how you wish it wasn’t so because your kid is simply one of the best people you know.

But part of the dignity of a life of Ian’s own choosing is navigating all of it, the good and bad. But never doing it alone. Middle school is coming again and I need to remind myself… I do not want ok. I want good. And that usually comes with some hard.

We will get there. Well, Ian is always ready. It’s me who needs to get there. But first, summer.

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We are never alone.

When I first heard those two little words — “Down syndrome” — I felt everything and nothing at all, all the same time. All these emotions clumped together into this heaviness wrapped all around me. I felt disconnected from my body. I remember thinking that if that hospital was on fire, I physically wouldn’t be able to get out. Of all that I felt, the most profound feeling was feeling so very alone.

And now? Well, now I get to live a life full of full circle moments. From the depths of despair to the greatest joys. The gift of perspective and purpose. This view of life as the precious gift it is. The deep connection I have to others walking this journey with us… those whose lives changed like ours and those who’ve loved us through it and love our son just as fiercely. Family and friends like family before the diagnosis and friends like family because of the diagnosis. None of this would’ve happened without those two little words.

Thank you for always supporting us and loving the Dynamic Duo! Yesterday we couldn’t walk together because of a global pandemic. But we weren’t alone. We are never alone. Because of all of you.

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The R-Word: Then It Became Personal

That’s so “retarded.” You’re such a “retard.” Retard… one of the few words that physically hurts me when I hear it. My heart aches; my stomach clenches; my eyes sting. It always takes a beat before it registers; did someone really just say that? As a special educator, I especially hated that word. Then 11 years ago, it became personal.

The time to give birth to our second son was here. I remember back to those days where my only worry was having 2 kids, and how I was going to be sleep deprived and still have to get my older son off to preschool. Even when I went into labor the day before Easter, I kept thinking, with a twinge of sadness, that our older son would celebrate Easter without us. Searching for eggs and his Easter basket… the rituals of the new beginnings that spring brings. Little did I know, the newest beginning of them all was nearly upon me.

As I lay on that table, exhausted from 32 hours of labor and 4 hours of pushing, I birthed our son into this world. And all I heard were whispers. All I saw was a bunch of people standing over our brand new son. My husband went over to meet our baby and came back to me and I will never, in all my days, forget the look on his face. I cannot describe it in words but it is etched into my memory. If I close my eyes, I can see his face so clearly… even he could not say the words to me. I begged him to tell me what was wrong and he kept telling me, “Nothing’s wrong… nothing’s wrong.” But his face told me he was lying. I think he was trying to protect me. Let me hang on to the last few seconds of thinking that my biggest worries were two kids, sleep deprivation and getting our older son off to preschool.

I finally cried out, “Will someone please tell me what’s going on?” And a nice NICU nurse came over and in a sing-song voice told me, “I feel like we’re talking to everybody else in the room but you!” I remember feeling so annoyed because she was so cavalier, like she was asking me if I’d like to go get a cup of coffee. I knew she was going to rock my word and here she was, so upbeat. Truth be told, I don’t think there would’ve been any right way to share that news but in that moment, the irony of upbeat and soul-crushing was too much to bear. Then she finally said the words, “Your baby has some markers that lead us to believe he has Down syndrome but we have to run some tests to be sure.” Someone finally said it. And I went numb. I think I said, “Ok, ok, ok…” about fifty times. A mantra of sorts. Ok, ok, ok. I couldn’t think, but I could feel. And all I felt was fear.

They told me our son had Down syndrome before I even held him. Before I even saw him. Did he have hair? Did he look like his brother? Was he short and chubby? Was he long and lean? Were his eyes closed or open, taking in the world? They handed me a diagnosis, and not my son.

All the fears, all the stereotypes, all the worries. What would his life be like? What would our life be like? What would this do to our older son? The unknown terrified me. I could only see Down syndrome. I could only see what I thought he would not be, what I thought he would not do.

And then, it seemed his birth day wasn’t done with me yet. His oxygen was low and he was taken to the NICU; they heard a heart murmur and ran some tests. When they escort you into the parent room, you know they’re going to rock your world again. And when the lady opening the door for you has a “Your Child Has a Congenital Heart Defect” booklet in her hand, you know that your life will never, ever be the same. Our son was not even 20 hours old when they told us he had 3 holes in his heart and something wrong with his valves and would need open heart surgery as a newborn. More fear.

I remember that night, sitting in the corner of the NICU, with the curtains drawn all around us, telling my husband, if we could stay like this — all of us tucked safely away from the world — that we would be ok. And it was in that moment, rocking our son in that safe little corner of the hospital that I saw him. Really saw our son.

Those hours gave way to days and weeks of getting to know him — Ian. As he began to unfold himself to us, I got to know our son. I would look at him and say, “You. Are. Ian.” I realized that I did not have a “baby with Down syndrome”… I had Ian. I could have never known in those early days that he would give my life even greater purpose, perhaps its greatest purpose.

He makes me want to move mountains for him, to show the world — HE IS IAN! He is fun and funny and smart and capable and loving and full of so much joy! He is not a label. He is not a stereotype. He is not defined by an extra chromosome. He is not scary.

But when people use the r-word, they instantly dehumanize our son. They make him a diagnosis… something scary, something to be afraid of, something different from them. I know that fear. I lived that fear in the beginning. And look at what I have now that I know him… I have Ian and all his glorious lessons on life and love and perseverance and what really, truly matters.

When people use the r-word, they make our Ian “less.” And when you do that, you miss out on meeting one of the most incredible people you’ll ever know. You miss out on seeing the person. What would happen if others started to see people, rather than a diagnosis? Rather than a stereotype? Rather than someone “different”? What would happen if people started seeing people for who they are and not for what others think they are not? Would they see a future co-worker? A friend? A classmate? A roommate? A neighbor?

Words matter. They have the power to uplift or crush. They can empower or dehumanize. They can instill confidence or fear. I know. Because the words “Down syndrome” brought me fear in the beginning. Until I saw our son, until I knew him. And when someone uses the r-word and makes him “less,” they miss out on his light. His light that illuminates all darkness; his light that has shown me the way. He makes everything wrong, right; makes everything sad, happy; makes everything hard, worth it. See his worth. See that words matter. See that words have power. See him. See our son. He is Ian.

Originally published at: https://www.bestbuddies.org/2018/04/26/thenitbecamepersonal-2/

Photo credit: Diana White Photography