Last night I was up in the wee hours of the morning, as I often am, with my special needs son, who often struggles to sleep through the midnight hours.
He was watching Mr. Rogers’ Neighborhood. My non-verbal, quadriplegic, perpetually smiling child reacts with nods, vocalisations, and waves as Mr. Rogers waves at the camera and sings, “I’ve always wanted to live in a neighborhood…with you.”
In this episode, on making mistakes, Daniel Tiger worries that he might be a mistake because he is different from other tigers he knows. Mr. Rogers, in his gentle and genuine way, reassures his listeners, “No one is a mistake. Even people who are very different. Everyone…is…fine.”
My very different child smiles and turns to look at me, then turns back to his friend Mr. Rogers.
These midnight hours often turn into my pondering time. I watch my son and reflect on how long ago it feels that I watched and listened to Mr. Rogers as a child, hanging on his every word, learning along with Daniel Tiger that I could be a good friend…that everyone of every color and ability was here for a purpose…that we were all neighbors in this not-so-big world.
Then I had a special needs child. I learned to my heartbreak that not everyone believes that people of all abilities have a purpose. As I returned with my son to Mr. Rogers’ Neighborhood, I found myself wishing that we all really could live there, where we can all be friends and no one is seen as a mistake.
I started to write a piece that I feel communicates the beauty and purpose of my son’s unassuming, unconditionally loving, generously joyful existence.
Then I felt afraid.
Afraid that my tribute to my child and my efforts to convey his great value in this world, his tremendous value to me, would be labeled as “inspiration porn.” Afraid that the very personal and tender emotions that I feel towards my precious child would be trampled on by others. Afraid that my expressions of gratitude for his life here, defined in unconventional terms, would be misunderstood.
Then he giggled at the trolley rolling through my old friend Fred’s living room. The same way he giggles when we play with trains and airplanes. The same warmth and love swelled in my heart that I get to experience every day, every time I hear that amazing laugh. I wanted to share that feeling with you, if I even could put it into words. So here’s what I wrote, every word of this poem is true of my sweet son.
I hope you like it, but since we are all different, there’s a chance you won’t. That’s OK. You can still sit at our table…
because no one is a mistake.
So God Made a Special Needs Child
God looked at the world with its greens and its blues, with its beautiful children in rainbows of hues, Its crawling things below and soaring things above,
but He sighed and said, “The world needs much more love.”
So God made a child very different from others, to help people see we’re all sisters and brothers.
This child couldn’t speak in traditional ways, but for those who would listen, he had so much to say.
He smiled at anyone who happened to meet him, even to those who didn’t know how to greet him.
He spread love through his sounds and the warmth of his gaze, he smiled and laughed even on his hardest days.
He taught people patience, if they took time to hear, and he offered a hug to everyone who came near.
Some looked on with pity, but little they knew, his life held so much joy from his point of view.
In all that he tried, he gave 200 per cent. He carried his purpose wherever he went.
He didn’t judge the mighty or small — race, gender, or social status, he shared smiles and love to all.
For those who knew him and loved him, he changed the world for good.
For those who didn’t see his value, he still offered them all he could.
I pray that someday the whole world sees the beauty of that smile.
The smile through struggle, the smile through rejection, the smile that goes the long mile.
So God made a special needs child as an ambassador of love and grace.
To teach the world unconditional love and patience, to make it a happier place.
The child who speaks through his smiles and waves has much to say if we listen.
Everyone is welcome with him, if only we all would see with his vision.
Never dismiss a human just because they aren’t exactly like you.
No one is a mistake, everyone has a purpose, we all are worthy of love, it’s true.
I had a job that I loved, that I got to go and do every day. (Thankfully, we are back in person, for the time being.)
Then the world as we knew it changed…in almost an instant.
We woke one morning and schools were closed. Suddenly, we were “zooming” (literally and figuratively) and not nearly with such a positive connotation that the word held for in me in the old order of the world. Every morning Zooming with my children’s classes, with my work family…AND zooming around the house trying to keep the kids from destroying everything, everyday.
My heart fell daily, reading story after sad story of the ways this unexpected virus was ravaging our nation and world, the hearts it was breaking, the families it was keeping apart. I cried a lot. I think we all did.
Fear burst in. With a child who (among other special needs) is not a strong deep-breather, who has been hospitalized in the past due to apparently lesser infections than this one, I did not feel safe out there and it was a struggle to even feel safe in here — in our little world growing ever smaller, in our cocoon of pretended security.
Something happens when you feel too safe, and too sheltered. Not good things. Without connections to other humans, we start to sink. Without any risks being taken, we inevitably lose something of value. We start to lose heart. We start to lose courage. We need each other, to “spur one another on toward love and good deeds.”
We gardened.
We called friends and family…a lot.
We read stories of lands far away and much more magical than ours, and stories of brave humans of the past who encountered challenges that they overcame. (Not easy stuff, but it helped us feel braver.)
We held each other longer each night before bed and we sang a little louder to our favorite songs.
We baked way too much and it showed around the middle, at least, for this mama bear.
All my resolutions fell by the wayside, one by one.
Get fit? Didn’t happen, but we took a lot of nature walks and planted flowers in our garden.
Eat healthier? This one, I haven’t decided, because cooking from scratch a lot more than usual resulted in overall healthier choices…and ice cream for dinner a little more often too, and the snacking. So much snacking. Maybe we at least broke even.
As quarantine wore on, and on, it became all too clear that resolutions and plans and vacation and gatherings were all but a loss.
Many people lost much more and they remain in our hearts and prayers.
What did we gain?
We gained awareness that this life of ours is not in our control. We gained time together, as a family, to reconnect and learn together.
We gained freedoms, strange to say when most of us felt very trapped, but it was the freedom to notice the little things more than we ever did before.
We gained humility, or tried to, as we were reminded all too starkly of our own mortality and how quickly life can change. This has always been true, but this year the truth surfaced like an underground volcano erupting without warning all over the world.
I hope we gained gratitude for every moment, every day, and every person we love and care for. Even the roughest days won’t seem so bad after all this, will they? I’m just so glad you’re still here. I’m just so glad we’re still together.
People keep asking the million dollar question…when will it end? Will 2021 be a better year?
The truth is, we don’t know. We never really knew before, only we may be more aware of that now than we were before.
I’m not writing down resolutions this year, or making advance plans, or grand proclamations. I’m thanking God that we made it this far, to today. I’m grieving those who did not. I’m accepting that I never will have a view on the future, and allowing myself to just be.
Onward, like a good soldier. Forward, like a trusting child. Unassuming of whatever the new year may hold in store. Thankful, for today.
Wishing you all a blessed new year, full of love, surrounded by family and friends, healthy and safe.
Only yesterday all they wanted were the characters from PJ Masks for Christmas. Little cars zoomed around as my little ones created “headquarters” out of pillows and acted out stories on the living room floor.
This year my son received and is reading the fourth book in the Harry Potter series, he also received a difficult Lego set that he constructed without help over a two-day period. My daughter created art projects and played games of strategy that were among her gifts.
Christmas is growing up in our house.
My oldest, with special needs, will always truly be my baby, smiling and squealing as he opened a set of Top Gun jets. I treasure those moments, but my mind remembers Christmases spent cuddling infants and sending excited toddlers back to bed for just a little longer.
They aren’t even very old yet. I look into their eyes and the sparkle is still there. The creativity, the magic, and the childish excitement for the season.
They are learning the truth that giving is more blessed than receiving, and it fills me with awe to see their joy in choosing and wrapping presents for their younger cousins and for each other.
My second oldest took the time this year to help his brother unwrap and play with his presents before he even touched his own.
Christmas is growing up because the children are growing up. They are maturing into thoughtful, caring, loving humans who understand the real reason for the season is God’s love.
I can’t say that I’m sad about it. After all, they are growing up into the kind of people I have prayed and strived that they might become. They are still young and we have more Christmases at home together, I know, many more.
Given how fast these years have flown by though, I won’t deny there’s a little pang in my heart as I watch them. I want to snuggle on the couch a little longer this time. I want to bake one more batch of your favorite cookies and watch that old sentimental movie again, with cups of hot cocoa in hand. I want you to always be my babies, at least at Christmas time.
My parents are at the other side of these years. My youngest sister became engaged right before Christmas and my brother and his wife welcomed their first child in November. With all the grace and wisdom they own, my parents spent the holiday season creating joy with their grandchildren and reminded me that the years go by so fast.
They didn’t need to. I folded and gave away her outgrown elf pajamas from last year, and I noticed that he hasn’t touched his dinosaur figures in a little too long. The years go by, Christmas by Christmas, and all we can do as parents is love them the best we can, hold them as long as we can, and show them how to walk in grace and wisdom, and especially, love.
Merry Christmas, from our home to yours. Wish you all the love and hope the season has to offer, even in the midst of such a troubled year. Hold the ones you love a little longer. Be blessed.
Someone told me that when they look around our world, they can’t see any good anywhere anymore. That they live with a broken heart and crushed spirit. That there is so much hatred and pain and suffering all around, they sometimes don’t want to get up in the morning. I don’t need to tell you where this person sees these things. There is trouble in this world, and there are bad people out there, it’s true.
But it’s not the whole story, or the only story, or the story that is worth the greatest of our time and energy.
If the sad things really break our hearts, they will motivate us to shine the best we can in the corner of the world where we have been placed. That’s called purpose, and without it, life gets harder.
I want to encourage that person, and all of us, to look around and see the good. Tell the good stories to your children. There is so much good around us, and we can be the good around others, if we focus on that. If we don’t get up in the morning, we can’t see the good or be the good.
Does my pity and sorrow change the world, or does my goodness change it?
Empathy: caring deeply about others and seeking to relate to their feelings in a way that moves us to help them. Empathy moves us to goodness. Caring about others drives us to get up, show up, and do goodness to them.
If our concern for the sadness that defnitely exists in the world cripples us, instead of sending us to encourage others, then it is self pity and not empathy. If our awareness that not everything and everyone is good causes us to stop seeking good entirely, then it is in fact misdirected.
Because I’m aware that not everything is good in the world, I want to get up in the morning and teach my kids what it means to be the good ones. Because of the beautiful little ones I’m here to protect, love and provide for, I rise and do my best to shine, so they can too. Their laughter brings me joy and in them I see the promise of goodness that is very definitely still in the world. Good not only is still here but is still the greatest force that exists and drives the majority of the people I know.
Don’t you know some pretty good people after all?
The latin phrase “dum spiro spero” means“while I breathe, I hope”.
I woke up this morning with breath in my lungs. My children woke with breath in theirs. If you’re reading this, then so did you. I’m grateful for that. It’s an opportunity to speak and encouraging word. It’s an opportunity to give of our abundance to someone less fortunate. It’s an opportunity to be present for the little ones I’m raising, in the hope that laughing together, reading together, and playing together, I can raise good people who make the world a better place. They already are, in fact, good little people who make the world better, my kids. I’m grateful for that too.
I can’t control that sad and bad things happen. I can only be a force for the good things.
How do we avoid losing hope? We like to talk about hope as if we either have it or we don’t. As if it’s a bird that either perches upon our hearts or flies away without our say so. This is flawed logic.
Hope is something we choose to seek and pursue, to take hold of it and hold on for dear life. We have to be intentional about that. We have to seek hope out.
We seek it in those we love, who love us. We seek it in our own hearts and minds. We seek it in God. We can even seek it on the internet!
One quick search for the words “good news” yields quite a bit.
I heard about a little boy who saved his sisters life.
I heard about multiple occasions where teens rushed into dangerous situations to help others.
…A child with a terminal illness who started a charity to give and encourage to others in the same situation.
…Organizations — people– fighting poverty and hunger.
…Neighbors banding together to help a family who suffered a loss.
…A teacher fostering a student in need (actually, quite a few of them).
…Families showing up every day for their children.
…Teachers working long hours and fighting for their students’ success.
…Nurses and doctors running towards people in dangers that a lot of us would run away from.
…Men and women running into burning buildings, risking their lives and sometimes sacrificing them to save others.
…Men and women standing in the line of fire to protect others.
…People paying other people’s bills in the supermarket, without even knowing that the person they helped needed it more than they knew.
…People surviving against all odds. Hope that we aren’t at the mercy of odds and fates.
Stories like that tell me beyond what I can ignore that there is a Force For Good working among us that is far more powerful than the bad.
There’s so much more. So much more. So much more good than bad in the world. So many reasons to have hope.
None of us who walk through this imperfect world are immune to suffering and struggles. One day I’m helping you, another day you’re helping me. We can only get through this life if we lean on each other, make the good, be the good, and see the good. None of us goes on forever, but we can leave behind some goodness if we choose it.
It starts with us, grassroots individuals in our homes and families, being good people, and raising good people.
Does that mean it’s always easy? NO!
Is it worth it? YES!
The best things are almost always the hardest, and the good is always worth the struggle! ALWAYS!
And here’s the catch, it doesn’t have to be big and it doesn’t have to be loud. There are quiet change-makers everywhere if you look in the right places, just offering a smile, just giving to a friend in need, just writing an encouraging note to a neighbor, just reading to a child, just speaking an uplifting word.
As parents, every day that we wake up breathing is a chance to pour goodness and love into the little humans who are looking to us to show them the good in the world. If we are faithful to carry out this most important duty to the world, we may elevate the goodness and kindness of future generations. What a legacy to leave behind — love for others. Empathy that moves to action. Goodness that walks around and speaks and touches people.
That’s what I want my kids to be, so I have to try and be that each day that I’m breathing. Some days I succeed and some days I fail, like all of us. But if I only see the bad, I might give up. If I focus on the sad, I might become paralyzed. I can lay in bed lamenting that the world isn’t perfect, or I can rise up and shine my light and make it a little more loving and kind. What should I choose?
I choose hope. I choose to see the good. If I hold on to the hope that is in my children, and in my God, and in my choices, then I can act in love and kindness.
Dum spiro spero. While I breathe, I hope.
Be the good, see the good, raise the good. Get out of bed. Rise and shine. Breathe and hope.
“Why is he like that?” a child asked innocently as she pointed to my son in his wheelchair. “Why does he have that thing?” pointing to his tablet.
I explain that he was born a little different and he uses his tablet to talk, making sure to add that he likes to watch football and is a big superhero buff. “I like that too!” the child replies.
Just like that, the world gets a little smaller and less lonely.
I love when kids approach us and ask those questions! Children are naturally curious, and I believe that young children are naturally inclusive. Throughout his years in school, there has never been a shortage of friends who are willing and eager to walk beside him, discover ways to make him laugh, push him on the swing, high five as they pass in the hall way.
I call those blessings, but there’s another name for it: inclusion.
My son has attended an inclusion school since kindergarten, this year he starts fourth grade. he has a paraprofessional who accompanies him into class and teachers who consider him as every other student. The result of his presence in class being normalized by the adults around him is that the students also find it very ordinary to have children with different abilities in their groups.
I could go on all day about the gift this has been to my son, and to me, because when I show up at his school, I never see a strange look directed his way. Never hear an unkind word spoken about him. He’s always in the middle of whatever the action is, whether in class or on the playground. Just where he wants to be, my little social butterfly.
It’s tricky being a social butterfly when you have different wings.
Not everyone in the world has the patience to wait while he plunks out his feelings on a tablet screen.
Not everyone understands that his speech difficulties say nothing about his intelligence. He’s not a baby, and he’s not clueless, he’s not even speechless — he just has to speak using a different skill.
I thought everything was accessible these days?
Not everyone realizes that there is a difference between accessible and inclusive. Let me give you an example that a friend recently described. For a playground to meet the written requirements of accessibility legally, it has to have a paved path. What it is not required to have is an accessible swing, equipment that a wheelchair can roll on, a slide that I don’t have to be the Hulk to hoist him onto. He can do no more at that park but sit and watch — not play.
We used to have a van with a wheelchair lift. When we go to the grocery store with a lift on our van, and park in the accessible parking space labeled “van”, very often the yellow lines beside the space provide insufficient room for our lift to open if there’s a car parked in the adjacent space. Even accessible spaces often aren’t really inclusive. Don’t get me started on the spaces with NO yellow lines at all.
My son’s class was attending their school play, and I showed up to sit with him. As his classmates filed in, they were seated together in rows, but the spaces for wheelchairs were at the back of the auditorium. My second grader sat with an adult at the back while his friends got to enjoy the play as a group. It seems like a small thing, but for a social butterfly with different wings, it matters.
This is beginning to sound like a rant, and it is not intended to be a rant. These are things that never crossed my mind before I gave birth to my son, or even after I had him, before he was old enough to think about these things. My intent is to speak about how important inclusion is.
Saving the butterfly
We were at the school garden, volunteering time one day, and my other son, the brother of my differently abled child, found a butterfly with a wing injury on the ground. Poor little thing doesn’t stand much chance in the wild. He came and asked me what kind of flowers it likes and then settled it in the greenhouse on a blooming plant in the hope — as vain as it was kind — that the little butterfly would have food while it healed in a sheltered place. It was so kind and my mother’s heart swelled.
Many people would have left it alone. Some might even have squashed it to put it out of its misery.
That butterfly is my son. He has the ability to soar, but he does it with different wings. Some cities, some schools, are still living without inclusion, and a lot of people don’t know that.
These butterflies I’m talking about, our differently abled children, are beautiful and the world will miss out on knowing them if something doesn’t change. A generation of children could miss out on friendships that expand their point of view. A future work force could lose the opportunity to see that everyone has purpose and everyone has something important to offer the world. A generation of butterflies could go through life with their wings clipped.
Let’s not allow that to happen. Let’s be the inclusive generation, and raise the next.
How? Here are just a few of many ideas! They spell out ABLE:
Ask! If you aren’t sure if something is inclusive, ask. Most of us moms are approachable and are very used to explaining our child’s needs. Ask, “If we meet at that playground, is there equipment he can use?” or ask the child, “What are your favorite things to do with friends?” You may find no one is very different after all.
Believe! Assume that it’s doable. Assume a mom will say yes to the invitation, that there is a food that isn’t even fancy that a differently winged child can eat. Assume it will be easier than you may imagine.
Lead! Be the first to ask, be open to someone new in your circle.
Enjoy! Take joy in learning all you can about new friends and their abilities, hobbies, goals and dreams.
When we are inclusive, we find that we are all a little broken but we can still lift each other and soar to new horizons. Together we can fill the world with beauty.
Comment below about ways you are practicing inclusion and ideas for ways we can all build a more inclusive and diverse world!
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