spread the word to end the word: a mama bear post

Ohmygosh, Tru looks so little here! I wrote this post two years ago, but I’m sharing it here in honor of Spread the Word to End the Word Day. The campaign aims to end the use of the word retarded. And while we’re at it, can we just altogether stop poking fun at those with special needs? Here’s what prompted me to share from the heart…

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Last week, I attended a meeting with a roomful of parents, all whom have kids with special needs. I didn’t want to be there. Nobody wants to be in that conference room. We’re insanely grateful for the resources and support, but we wish we didn’t need it.

Nobody ever starts a family thinking this will be part of the journey. This happens toother families, we tell ourselves. And because of that naiveté, I wasn’t always as compassionate as I should have been towards families walking this crooked path. I’m so embarrassed to admit that there was a time when I’d laugh at friends who used self-deprecating humor like “I’m such a retard!” or “what are you, slow!?” I might have even uttered that stuff myself. I didn’t think about how those wise {or not so wise} cracks furthered the prejudices against special needs kids and adults who cannot help the way they were born.

I don’t write a lot here about Truman’s specific needs; I think this was the last time. He is so much more than the labels put on him. I want him to be known for his contagious joy, for his growing brilliance, for his love of people and music and   trees and lights and puppies and babies and books and snuggles. I want you and everyone he meets to know all of this about him. Why? Because people make fun of what and who theydon’t know. But they think twice about doing so when they have a relationship with or affection for someone who’s the butt of a joke.

I believe connection breeds compassion.

If your beloved friends and colleagues come from different ethnic or spiritual backgrounds, you’re less likely to utter a racial or religious slur. If one of your favorite neighbors is lesbian, you’re less likely to criticize something by calling it “gay.” But it’s less likely you have regular interactions with someone who has special needs, which makes these innocents much easier to mock.

Last week, someone I know {though not well} posted a Facebook photo of himself with a befuddled, dorky look on his face, standing next to a sign that says “Special Needs Entrance.” When I skimmed the comment section below his picture, each “like” and “LOL” from his Facebook friends felt like daggers to the heart. It angers me to think that, years ago, I might have laughed at that kind of humor. And it saddens me to know that brand of ignorance continues.

Some of you might think I need to just relax or lighten up. But that’s not the nature of a mama bear like me. We moms {and dads, too} try to protect our cubs to no end – from cruelty, from prejudice, from harm. I pray Tru will never feel ostracized or ridiculed for being a little different. He is pure sunshine – and I’ll do my best to keep anyone or any joke from dimming his light, directly or indirectly.

By virtue of reading this, you are connected to me – and I’m so glad. My hope is that the next time you feel compelled to make fun of a disability or laugh at an insensitive joke, you’ll think of me…and then you’ll think of Tru…and maybe you’ll change your mind. And, in that act of kindness, you’ll change others’ minds, too.

we thought today would be different

This isn't how today was supposed to go: post about #autism #kindergarten and rearranged dreams

This isn’t how today was supposed to go.

first day of fifth grade!My big boy, Ryder, strutted off to fifth grade as planned (how did he get to be a fifth grader!?), but we’d long imagined that on this day, he’d have his little brother tagging along. Not long after Truman was born, nearly five and a half years ago, Ryder excitedly figured out they’d get to have one year together in the same school, with Tru in kindergarten and him in fifth grade. He couldn’t wait to show him the ropes and be his protector. He talked about it often – until last winter, when it became clear Tru wouldn’t be ready for kindergarten this fall. His particular blend of challenges from developmental delays and ASD would make it really difficult to focus and flourish right now. Ryder was bummed, which is so sweet.

While my heart fluttered with pride this morning as Ryder boarded the bus to start his last year of elementary school, it also ached for the little guy at our side. I wish I could just wave my magic mama wand – the one that can fix practically anything, from hurt feelings to scraped knees. It’s hard to not have the power to fix this.

That said, I know this bonus year is also a huge gift. I would have been a complete mess sending Tru off to school and now I get one more year with my little shadow. More snuggles, more giggles, more adventures, more alone time. We and his team of specialists have an extra year to work with him and plan ahead for his kindergarten debut. And he gets one more year to learn and play at a preschool he loves.

tru drawing in the dudioAs I was typing this, Tru just crawled into my lap, put his head on my chest and closed his eyes. I kissed his little head, breathed in his little boy smell, and closed my eyes, too – soaking up the moment and feeling grateful he’s still right here by my side…in my arms…under my wing for one more year.

Come to think of it, maybe this is exactly the way today was supposed to go.

give candy, give LOVE. pass it on…

Truman and his daddy last Halloween

This is making the rounds on Facebook and no one seems to know the original source. But it’s such an important message, I couldn’t resist sharing…

In a few days, a lot of creatures will visit your door. Be open minded. The child who is grabbing more than one piece of candy might have poor fine motor skills. The child who takes forever to pick out one piece of candy might have motor planning issues. The child who does not say “trick or treat” or “thank you” might be painfully shy, non-verbal, or selectively mute. If you cannot understand their words, they may struggle with developmental apraxia of speech. They are thankful in their hearts and minds. The child who looks disappointed when he sees your bowl might have a life-threatening allergy. The child who isn’t wearing a costume at all might have SPD or autism. Be kind, be patient, smile, pretend you understand. It’s everyone’s Halloween. Make a parent feel good by making a big deal of their special child. ♥

Reading this made my heart ache a little for Tru and all the other kiddos for whom tonight will be both wonderful and overwhelming. And for all the parents doing our best to help them feel confident and safe. There is no way to predict how the night will go for these tiny superheroes. Tru, who is over-the-moon about being a fire fighter, might breeze through it {fingers crossed}. Or…an unfamiliar noise or gruff person or too-heavy candy bag or scratchy tag on his costume could be too much for him to process. We won’t know till we’re in it.

And so, this reminder to be kind-hearted and open-minded to all of our kids – especially those for whom tonight will be a big, brave undertaking – touched my heart. I hope it touches yours, too. Wishing you a happy Halloween.

 

Imagination Movers {Why I’m Crying Happy Tears}

Once upon a time, a creative girl married a creative boy. They were always imagining wonderful things – sharing ideas, playing silly games, asking big questions, and envisioning their future.

Along came a precious baby boy and he, too, had a giant imagination. “He’s just like us!” they exclaimed with relief. And together, the threesome lived happily together, playing make-believe whenever they could. There were costumes and art projects,  living room concerts and bath time adventures. In their colorful, fanciful world, anything was possible.

And then, to the family’s surprise and delight, another baby boy arrived from the stars. So sweet and giggly, they knew he was made of pure magic. He took in the world with big eyes and decided to bloom at his very own pace. Slowly but surely {much slower than most}, he learned to say words…and walk without wobbling…and not to eat rocks. With every small step, his family cheered. They sang songs! They jumped for joy! They hugged him tight! But deep in their hearts, in the back of their minds, the creative mama and the creative papa and the creative big brother worried. For their star boy did not seem to play the “right” way. He would copy a story, reciting the lines; or mimic a movie, acting out every scene; or shut out the world, deeply lost in his own. But never, not ever, did he play make-believe with his very own thoughts.

The boy’s team of helpers, real angels on earth, said lots of things – both crushing and kind – like “we just can’t be sure” and “we’ll do what we can.” The mama cried softly, the daddy shook his head; for the first time in forever, they were out of ideas. It was impossible for them to imagine that it was impossible for their child to imagine.

So, they decided to do the best thing they do: play anyway. Day after day, month after month, they played and he watched. They said silly things. They sang funny songs. They made pretty art. They made up tall tales. He giggled and clapped; he knew it looked fun. He studied their every move, like he could see the ideas swirling over their heads.

And then, one day last week, something bright caught his eye. A little light bulb, flickering above his own head. He reached up, his eyes wide, unsure what to do. “Mommy?” he said, seven times in a row. She waited for a question to form. A request for more milk? A plea to go outside? And that’s when he said it. Five glorious words from his four-year-old lips: “Can we play rocket ship?”

Her eyes snapped up from her paper. There, dangling above him, was a teeny tiny light bulb; a miracle in midair. He raced upstairs and she followed him close, desperate to keep the little bulb lit. She grabbed two pilot hats from the costume bin and placed one on his head, the other on hers. Then he grabbed at thin air, and pulled it over his chest. “Put on your seat belt,” he instructed, as his mama tried to catch her breath, tried to soak up the moment, tried to keep her heart from leaping out of her chest. She looked at him in disbelief as he held an invisible steering wheel, counting down numbers – 5. 4. 3. 2. 1. – and blasted them off into a new world. They went faster and faster, dodging meteors and catching stars. And when they landed back down, they collapsed into a pile of giggles.

She dabbed her eyes as she looked into his; foreheads touching, hearts thumping. And then she said the five words she’d been longing to say for so long: “You have a great imagination.” 

 

Come Get Messy: Can You Spot the Miracle Here?

To most folks, this pic probably seems pretty straightforward: you see a super-cute kiddo playing in the dirt.  But when I look at this photo, I see so much more. In fact, I see a miracle. Can you spot it?

I see ten tiny toes happy to be out and about, no matter what surface is beneath them. I see ten little fingers about to make a glorious mess with a toy train and a pot full of dirt. I see our super-duper-special boy content enough to just play – and it chokes me up.

This could never have happened last spring. I remember sitting in the front yard with one of Truman’s therapists as we tried to coax him onto the grass, urging him to let just one little toe touch the soft, green grass. But Tru was riddled with fear, on sensory overload. It was as if we were asking him to walk across fire. He couldn’t handle touching most textures. And any mess – whether a speck of dirt or a smudge of butter – on his skin or clothes threw him for a total loop.

The difference now is like night and day. Tru can make a mess with the best of them; sometimes I see him tense up, but he looks to us for reinforcement – laughter, smiles, nods usually do the trick. I wish I could have whispered in my ear a year ago that this part would get better; that change would come, slow and steady.

Our journey with Tru is teaching me to trust in new ways, to accept where he and we are in the moment. I catch myself sometimes, feeling scared and worried. Asking myself questions about his tomorrows that are impossible to answer today. My heart knows worrying gets me nowhere, but my head can be a stubborn stick-in-the-mud. I find comfort in reviewing the gratitude list that’s practically engraved on my soul: for his amazing team of advocates and therapists and caregivers, for people in his life who adore him no matter what, for his bright-as-sunshine spirit, for his physical health, for weighted blankets and Nuks and Thomas the Tank Engine, for my flexible schedule, for chocolate milk, for everything that contributes to his well-being and, in turn, to our family’s.

Remembering all of that goodness shifts my frame of mind. But nothing does it better than noticing and celebrating these milestones that feel like little miracles. They remind me this messy life is perfectly beautiful.

A Special Message: That’s Not Funny

on the road to more compassion...

Last week, I attended a meeting with a roomful of parents, all whom have kids with special needs. I didn’t want to be there. Nobody wants to be in that conference room. We’re insanely grateful for the resources and support, but we wish we didn’t need it.

 

Nobody ever starts a family thinking this will be part of the journey. This happens to other families, we tell ourselves. And because of that naiveté, I wasn’t always as compassionate as I should have been towards families walking this crooked path. I’m so embarrassed to admit that there was a time when I’d laugh at friends who used self-deprecating humor like “I’m such a retard!” or “what are you, slow!?” I might have even uttered that stuff myself. I didn’t think about how those wise {or not so wise} cracks furthered the prejudices against special needs kids and adults who cannot help the way they were born.

 

I don’t write a lot here about Truman’s specific needs; I think this was the last time. He is so much more than the labels put on him. I want him to be known for his contagious joy, for his growing brilliance, for his love of people and music and   trees and lights and puppies and babies and books and snuggles. I want you and everyone he meets to know all of this about him. Why? Because people make fun of what and who they don’t know. But they think twice about doing so when they have a relationship with or affection for someone who’s the butt of a joke.

 

I believe connection breeds compassion.

 

If your beloved friends and colleagues come from different ethnic or spiritual backgrounds, you’re less likely to utter a racial or religious slur. If one of your favorite neighbors is lesbian, you’re less likely to criticize something by calling it “gay.” But it’s less likely you have regular interactions with someone who has special needs, which makes these innocents much easier to mock.

 

Last week, someone I know {though not well} posted a Facebook photo of himself with a befuddled, dorky look on his face, standing next to a sign that says “Special Needs Entrance.” When I skimmed the comment section below his picture, each “like” and “LOL” from his Facebook friends felt like daggers to the heart. It angers me to think that, years ago, I might have laughed at that kind of humor. And it saddens me to know that brand of ignorance continues.

 

Some of you might think I need to just relax or lighten up. But that’s not the nature of a mama bear like me. We moms {and dads, too} try to protect our cubs to no end – from cruelty, from prejudice, from harm. I pray Tru will never feel ostracized or ridiculed for being a little different. He is pure sunshine – and I’ll do my best to keep anyone or any joke from dimming his light, directly or indirectly.

 

By virtue of reading this, you are connected to me – and I’m so glad. My hope is that the next time you feel compelled to make fun of a disability or laugh at an insensitive joke, you’ll think of me…and then you’ll think of Tru…and maybe you’ll change your mind. And, in that act of kindness, you’ll change others’ minds, too.

 

 

Make a Joyful Noise: The Cutest Jingle Bells Ever

Need a pick-me-up today? Just click here for a video from my cutie-pie Truman, who has been singing Jingle Bells at the top of his lungs, everywhere we go. He doesn’t care that he can’t pronounce many of the words. He doesn’t care if the tune’s a little off sometimes. He sings it with gusto and joy – and my heart does cartwheels every time.  

 
And when he sings his heart out, his happiness spreads like wildfire. At the grocery store, people peek out  from the aisles, grinning ear-to-ear. One day last week, when Brad took Tru out for lunch, one of the staffers came out to see them at their table. She said the staff had been having a hard day until our little soloist waltzed in and lightened the mood for everyone.

Tru has made such incredible progress over the past year, but especially during these past several months. He’s now in a preschool setting three days a week with special ed liaisons he adores and therapists who work with him on his developmental delays and special needs. We work with him at home, too, mirroring the things he’s learning and experiencing at school. Lately, Brad and I keep looking at each other in amazement over the ways our sweet boy is blossoming – from actually choosing between two items to recognizing emotions like “sad” or “happy” to interacting with his big brother. I get goosebumps on a daily basis.

Oh, how I pray it just keeps on going this way – him blooming and growing and feeling so happy and confident that he just can’t hold his song inside.

It’s Your Party, But I’ll Cry If I Want To {04.28.11}

Dear Tru,

Lately, I’ve been getting a little choked up in anticipation of this day. It just feels big. How can it be that you’re already three, sweet baby boy?

As I brush tears off my cheek, I can hear you singing and giggling to yourself as you fall asleep in your room. You’ve been totally tickled by life since the day you were born, like you’ve just known deep down what an honor it is to be here. What cracks my heart wide open and puts this lump in my throat is the awareness that you’ve had so many opportunities this past year to change your mind, to lose your sparkle, to change your tune. And yet you keep on singing. That resilience is enough to make this mama weep with gratitude.

Our family started a new journey last fall, as we learned you need much more help than other kiddos to do stuff we’d always taken for granted: to talk, to play, to eat, to understand. Last fall, for example, you knew six words. Now you know more than 50! You touched slimy applesauce yesterday. And you let daddy tip your head back in the bathtub. All evidence that you’re a total rock star! Sometimes we watch and wait while you think and think…and then manage to deliver three words all at once, like “go. see. daddy.”  You’re so proud when it works and we all do a happy dance, don’t we?!

You have worked so hard and been so brave. You have a posse of therapists who adore your sweet spirit, who are so impressed with your progress, and are becoming your best buddies. And can I tell you a little secret? For me, one of the great big blessings in all of this is how, after each therapy session, you’re so tired that you’ll often fall asleep in my arms, just like when you were a baby. I get to hold you and rock you, listen to your breath, study your perfect face, kiss your soft cheeks, thank my lucky stars and whisper sweet somethings into your ear: tiny reminders of how brilliant you are, how brave you are, and how much mommy loves you.

I feel like those sacred moments are more important than any strategy or exercise or tool we’ve been given; if there’s one thing in life that I get to teach you, I want it to be how incredibly loved you are – exactly the way you are. Happy birthday, my little Buddha.

{spread the love. share your thoughts here}

It’s Your Party, But I’ll Cry If I Want To {04.28.11}

Dear Tru,

Lately, I’ve been getting a little choked up in anticipation of this day. It just feels big. How can it be that you’re already three, sweet baby boy?

As I brush tears off my cheek, I can hear you singing and giggling to yourself as you fall asleep in your room. You’ve been totally tickled by life since the day you were born, like you’ve just known deep down what an honor it is to be here. What cracks my heart wide open and puts this lump in my throat is the awareness that you’ve had so many opportunities this past year to change your mind, to lose your sparkle, to change your tune. And yet you keep on singing. That resilience is enough to make this mama weep with gratitude.

Our family started a new journey last fall, as we learned you need much more help than other kiddos to do stuff we’d always taken for granted: to talk, to play, to eat, to understand. Last fall, for example, you knew six words. Now you know more than 50! You touched slimy applesauce yesterday. And you let daddy tip your head back in the bathtub. All evidence that you’re a total rock star! Sometimes we watch and wait while you think and think…and then manage to deliver three words all at once, like “go. see. daddy.”  You’re so proud when it works and we all do a happy dance, don’t we?!

You have worked so hard and been so brave. You have a posse of therapists who adore your sweet spirit, who are so impressed with your progress, and are becoming your best buddies. And can I tell you a little secret? For me, one of the great big blessings in all of this is how, after each therapy session, you’re so tired that you’ll often fall asleep in my arms, just like when you were a baby. I get to hold you and rock you, listen to your breath, study your perfect face, kiss your soft cheeks, thank my lucky stars and whisper sweet somethings into your ear: tiny reminders of how brilliant you are, how brave you are, and how much mommy loves you.

I feel like those sacred moments are more important than any strategy or exercise or tool we’ve been given; if there’s one thing in life that I get to teach you, I want it to be how incredibly loved you are – exactly the way you are. Happy birthday, my little Buddha.

{spread the love. share your thoughts here}

My Kid is Perfect ~ 02.07.11

There is something I feel ready to share here with you, my dear readers…but I’m kind of at a loss for words. A rarity, right!? So, I’ll just dive in and see what comes out.

Here’s the part you may already know: I am blessed to be “mommy” to this ridiculously adorable child – Truman – who adds immeasurable joy to my days. Those eyes, that smile, his personality all make my heart leap when he toddles into the room. He is happiness personified. And on top of it all, he’s a first class cuddler whose snuggles could melt glaciers.

Right now, he is teaching me so much about the power of the human spirit. After two months of in-home testing last fall, Tru was diagnosed as having “significant developmental delays, across the board” (except in social-emotional skills – cue that megawatt smile!). I remember walking out of the special education offices feeling shocked by the extent of his needs, but also so grateful to have access to compassionate experts and top-notch intervention.

Tru’s therapists come to our house twice a week and he has been working so hard with them. Sometimes it breaks my heart to see how serious and studious he gets during their visits. He is exhausted after each session. But whenever he has a small victory – like getting all three colored shapes into the shape sorter or touching a texture he’s scared of – he is so proud and excited, I could weep.

And lately, he is making such incredible inroads with language. His big brother picked up words easily, as most toddlers do – we said them, we read them, he understood them, he repeated them. Mission accomplished. Not so for Tru. Just now – at almost 3 – he seems to be picking up on the fact that language is like magic: you ask for something and you get it. And when you put two words together, it works even better!

Every time Tru puts words together that I can understand – like “hi, mama” or “go home,” I just want to twirl him in the air (and sometimes I do!). This work could get so frustrating, but he is reminding me what it means to be resilient and joyful, challenged and forgiving. We can hold and honor the hard stuff and the happy stuff all at once.

So, my little boy has so-called “special needs.” He doesn’t learn or act exactly the way other kids his age might….and he is still absolutely perfect, precious and brilliant.