Boy sitting in a sand pit playing with a spoon and bucket.

'It's Time to Go': The Bittersweet Summer Before My Son With Down Syndrome Starts School

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Sixty minutes. One hour. A solid hour. How can something so solid be made of sand?

There was focus and intent. There were teeth grinding and spoons and buckets scooping and pouring. For 60 minutes. I nearly keeled over.

I knew he loved the sand. I mean, I’d seen a bit of it – we had bought one of those tables but it kept getting drowned by the weather event they call “U.K. Summer” (which looks more to me like bucketing down rain, but beggars can’t be choosers). That sand was played in, but not like this. Nothing remotely like this.

young boy with down syndrome plays in a sandbox
Rukai playing in his sandbox.

Sixty minutes. I may as well have been invisible. He’s never sat and paid solo attention to anything off-screen for so long, always wanting to hang out with me, clinging, looking for direction, for suggestion, for a march or a dance or a different episode of Mister Tumble on TV. And as much as I treasure my time with him, my heart has been desperately seeking evidence of his imagination brewing. Great savory chunks of that magical “pretend play” have eluded us for so long.

I imprinted that scene slap-bang onto my retinas so I could pack away that memory beside the rest.But as the time ticked away and I sat there watching him shine beneath a golden ball high above us doing the same, here in this thing they call “summer” – as sure as caterpillars eventually grow wings – he sprouted a pair of his own. They were electric, glittering and too bright to watch, but I stared anyway. Gods be damned, I stared and stared.

Those memories which say, “Yes I can…you watch me.” Yes I can. Yes I am. Yes I will.

You watch me.

Sixty precious minutes in another one of these fleeting days. These days which are shockingly short. These days which are dwindling here within that final countdown to “Big School.”

No one is ready for that around here.

My heart is in my throat and at the same time below my feet. I trample it daily. I am so afraid for him, for us – that he is not totally ready, that he may be treated badly, that he may be squashed into a corral when he should instead be set free across a wild, grassy range. That he may be marginalized and underestimated and limited. My son is going to start school next month. And here I am, elated he’s sat for an hour to play in the sand. I’m elated that I’ve seen his pretend play hit stellar heights all in the space of a few days. After a stint on a local “beach” earlier this week and this morning’s amazing bit of longer play in a makeshift sand pit, my brain said, “Holy cow, go get a better sandbox, stat – this is important. Just watch him think…”

So we went.

And we bought it.

And we set it up.

And he played for an hour.

Why have I only just figured this out?

What else have I missed?

What else will they miss?

How in the world am I going to keep all our means of communication open enough to enable identification of the passion points? To know where he wants to go…

…if he still cannot speak?

It is on this point which my heart is skewered. Every. Single. Day. But like everything else, it may be more difficult than the “norm,” but we will still find a way. Like everything else, we will once again glow with pride as he takes another magical step towards independence.

We came in from the sun to eat dinner. He ate with fervor, then there was his favorite show before him. To entertain him while I got some head space. Screen time is a necessity in this house. My life requires that offer of head space – no shame in this house! Think otherwise? You try living here.

Then the table is pushed away, and now cleared up, he takes my hand. No words – he just pulls me to the giant drawing pad he’s set on the floor. Looking in earnest at the box of pens, I pull it out and he roots around. We work the cap off together and here I draw a circle. This is maybe replay number three of the circle-drawing thing, but it hasn’t dulled the shine because we are so very much just getting started. He takes the marker off me, touches it to the paper and then he’s off.

Round and round and round. That is the circle of life. That is everything.

circles drawn by young boy with down syndrome
Rukai’s circles.

He’s done it before, but I’m blown away by the fact that I’m seeing him remember it’s something we’ve done before. I’m seeing depth of understanding and the attribution of purpose to what he is doing. And I haven’t said a damn thing. I just drew a circle.

But there is meaning. This is not scribble.

There is intellect. This is not clueless.

There is ability. This is not hopeless.

There is Rukai. This is not Down syndrome. This is Rukai. Drawing me some circles. So many suggested he wouldn’t. I want to bring him to face them with a pen, to circle them as if with shame.

Look at me! Look what I know! Look what I can do! Look who I am!

Look.

Shut up and look.

My mind, too, is racing in those circles today. Round and round.

School coming. Late milestones. So much to plan. So little time left to be “just us.” My heart is breaking, yet my heart is soaring. I don’t want time to take my little boy from me, but then again, it’s not really time taking him away – it’s him taking himself away. Ahead. Forward. Upward. Onward. I am just a conduit.

And these feelings – like all those other deep, emotional experiences I’ve had in these short four and a half years – these, too, are just like everyone else’s.

A child is born to a mother. A child grows and develops and learns and thrives. A child becomes. A child exists. A child is. There is love.

There are so many wishes I have for my son as these days dwindle and our last summer as “just us” moves further behind before it eventually drops away.

“It’s time to go.” They said it at the end of the show “In the Night Garden,” and I burst into tears.

“It’s time to go.”

So, my son, go. But please always make sure I know where you are, and remember I am always here. Even one day when I am not. I am always here.

Rukai, I hope your life is kinder than the world is.

I hope the goodness in you draws goodness to you.

I hope you know you are my world.

I hope the world knows you are.

And you are Rukai. In sand and in circles and in my heart. My son. My every wish. My pride and my morning and my night and the flame that lights up my soul. Fly, little man. You go on and soar. Dream big.

I could not – in any plane of existence – be more proud of you.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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Mom Becomes Special Needs Photographer After Her Daughter Is Born With Down Syndrome

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Three years ago, Stephanie Mullowney had zero photography experience. It wasn’t until her daughter Hannah Grace was born that her passion for photography blossomed.

Within moments of being born Hannah Grace, now 2 years old, was diagnosed with Down syndrome and several holes in her heart. Mullowney knew from sonograms there was a chance her daughter would be born with the condition, so her and her husband moved from their home in Maui, Hawaii, to be closer to Mullowney’s family, and a better equipped hospital, in Tennessee.

Five days after Hannah Grace’s birth, Mullowney’s husband left, leaving Mullowney to raise her daughter on her own. Months of hardship followed, but the one thing that got Mullowney through was taking photos of her daughter.

Hannah Grace and Stephanie Mullowney
Mullowney and Hannah Grace

“I would take picture after picture of her with just my iPhone and a nice camera I got as a gift at my baby shower,” Mullowney told The Mighty. “I took literally hundreds to show the world how beautiful she really was.”

When Hannah Grace was 8 months old, Mullowney finally found a job. Her boss, a professional videographer saw Mullowney’s photos and urged her to buy a professional camera. “The more he encouraged me the more I believed I could do it,” Mullowney said. “So I bought a camera. [It] took me 20 minutes to get the strap attached to it.”

Professional looking photo of Hannah Grace

Now, a little over a year later, Mullowney is a professional – starting her own company, Paper Dolls Photography, in March. Since then, she’s done interviews with local news, radio, and several publications.

Young boy wearing patriotic sunglasses

Through her photos, Mullowney hopes to remove the labels society has placed on individuals with special needs. “Photography to me is like having a voice with no words, and a lot of times my subjects are nonverbal so it’s my job to be able tell their story for them and their families.”

Three adults with special needs

Mullowney focuses on photographing people with special needs and their families. She also takes photographs for The Down Syndrome Association of Middle Tenn. and the Best Buddies Organization, in addition to her private clients.

Photo of young girl smiling

Her advice to parents looking to capture their children with special needs on film? “Capture every moment without missing a single one because every little thing they do is a huge deal,” Mullowney told The Mighty. “You’ll find that taking that perfect shot will come with ease because every single one of them will in fact be perfect and cherished whether is taken with an iPhone or a fancy high end camera.”

Photo of happy little girl walking

For more of Mullowney’s photography, visit the Paper Dolls website and Facebook page.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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What School Reports Don't Show About My Daughter With Down Syndrome

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It’s school report time for my daughter Evie, who has Down syndrome. As lovely as the comments about her are, it still hurts to read certain things.

Her attendance stands at 79.34 percent, including one unauthorized absence. The school average is 97.1 percent. An attendance of below 89 percent deems a referral to the Educational Welfare Officer for monitoring or intervention.

I know there will be no EWO referral. I know Evie will be exempt from that.

I also know that the one unauthorized absence refers to one late mark — a mark given because I struggled at the start of the term to get her into school, when her thyroid function was beginning to fall and her anxiety levels were through the roof. Ever seen an anxious 7-year-old with learning difficulties and sensory processing issues? Ever tried to make them do something they don’t want to do? The fact that I managed to get her into school at all that day deserves some type of award, not a negative mark.

Evie has a low immune system and sleep difficulties, plus her underactive thyroid causes her a number of issues –- lethargy, anxiety, skin conditions. Three of those authorized absences were caused by medical appointments, and many more were due to illness.

Evie’s classmates this year have taken their SAT tests. Evie hasn’t, and rightly so. Her school has still sent us the information about the SATs and results.

I know we have to have this, all of this information. But the phraseology on these documents is such that it truly hurts.

“BLW” – is awarded if the pupil is below the standard of the tests.

Cheers, thanks for that.

While Evie isn’t at that level, why is all the phraseology so negative? Why on earth hasn’t our government or whoever designed these codes thought about this a little more? Why not put “not tested?” All children are worth more than a code or a mark. They are all amazing, each and every one of them.

I know that I should pretend that none of this bothers us. But it does.

I know that there are valid reasons behind each and every absence.

But it still hurts.

Just like every time I have to complete a form that I feel demands a character assassination of my own child. I have to list her weaknesses to get her the support that she needs.

Evie gives so much to this world. I don’t blame her school in any way for sending me the information. But surely there is a better way. All of this preoccupation with best at this, needs to work on that, test this and fail that… it’s no way to live.

I say all of this as a geek who loved tests and exams, who still loves to read and research. I know that not everyone is like me. I also see that the monitoring by the government, however misguided, is a way of trying to encourage and assist with learning. But if you don’t love to read or research, how will telling you at age 7 that you need to try harder help? It only makes them feel worth less than their contemporaries.

Evie may not understand any of this right now, but on her behalf and those of all her peers, I am incensed. They are just children. We learn better when we are happy, when learning is fun and natural. But instead let’s add more pressure to the teachers upon whom the results will also reflect. Let’s just add to their workload. Instead of allowing them to guide our children gently and with encouragement, let’s make their job even harder. What a waste of time, energy, emotion and money.

Evie is a valued member of her class. She is described as “bubbly and energetic.” She has progressed so well of late, particularly with reading, her favorite thing to do. Receiving negative content, no matter how well intended, obviously has a negative impact. Yes, we’ll brush it aside and carry on regardless, but it’s still there and next report, we’ll brace ourselves to read it once again.

Our children have so much to give. Maybe Evie isn’t going to be a rocket scientist, but then how many of us are?

Evie can sense when I’m sad; she knows when and how to make us laugh. According to one of her school friends, “Evie is the only one who checks on them when they fall.” A teacher told me that Evie runs around after another child and mothers her, fetches and carries for her…too much sometimes. Her giggle is magnificent and contagious.

These are the skills I want her to have.

Love.

Laughter.

Caring.

Sensitivity.

They are true gifts. You can’t teach them or buy them. They are inherent within her. She is a true gem. A rare find in this topsy-turvy world of ours.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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6 Questions People Ask About My Kids With Down Syndrome

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When people find out that I have kids with Down syndrome, there are certain turns the conversation always seems to take. Whether it’s questions, assumptions, or myths that need busted, Down syndrome is a conversation starter.  Here are some of the most common questions and comments I get, and my answers.

1. “I love how they’re always happy!”

While I love the positivity in this statement, it’s categorically false. Down syndrome does not alter the range of emotions a person is capable of experiencing. My boys express an enormous range of emotions.  I am not sure there’s any emotion they are lacking. They have the same feelings as any other child.

2. “There are levels of Down syndrome, right?”

I’m never quite sure what this one means, but I hear it a lot, but no, there are not levels of Down syndrome. Down syndrome affects different bodily systems like cognitive function (IQ), digestion, heart, muscles, and even facial structure and more. How each individual is impacted in each area varies widely.  Some people have majorly affected hearts and some have no heart problems at all. Some people have lower IQ’s and some have average IQs. To take my two boys as an example, Alex’s IQ is in the mid 60’s, so he’s mild to moderately impaired in cognition. He was born with a small hole in his heart which repaired on its own, with no intervention, and health-wise, he only has ear, nose and throat problems.

Ben’s IQ is in the 40’s, and he was born with Hirschsprung’s disease and hearing impairment. Ben has no heart problems, but he had leukemia, which is more common in Down syndrome. He also has autism, which is more common in Down syndrome, and a few other medical concerns. As you can see, just between these two individuals, there is enormous variation, and that is the case with all people with Down syndrome.

3. “Are they ‘high functioning?’”

What exactly does this mean? My guess is that saying “high functioning” makes people feel better about Down syndrome, but it’s not really a useful term. When I first had a child with Down syndrome, I bought into the myth that “high functioning” is better. While I can see that higher intelligence might make it easier for a person to become as independent as possible, I no longer consider “higher functioning” as better. Each individual has much to offer, and there’s no reason to assume any one factor is better than others.

There are also certain questions that I get specifically as a parent of two children with Down syndrome.

4. “Are they both yours?”

Um, yeah.  I didn’t kidnap anyone.

I believe this question is asking if one is adopted. I get the curiosity, but I never quite know what to say. I generally try to give this one a positive spin by saying we enjoyed parenting Alex so much that we wanted another child with Down syndrome. In our case, yes, one is adopted. There are usually dozens of adoption spin-off questions as well. But Ben’s story is Ben’s, and involves a whole other family, so I try not to overshare a story that involves so many other people.

5. “How do they get along?”

How do your kids get along?  Hugging one minute and Ultimate Fighting the next?  Yep, mine too.

6. “Are you going to have more?”

I don’t believe so, but children tend to kind of fall into my lap, so I remain open.

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When My Son With Down Syndrome Wanted to Take Driving Lessons

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I took my son, Alex, to a water park yesterday, which is one of his favorite things in the world. As we left, he told me he wanted to take driving lessons so he could come back when I’m too busy to take him.

Alex is over 14 now, and by all means he should be anticipating driver’s education, but it’s not something he will likely do any time soon. Alex has Down syndrome.

I didn’t quite know how to explain it to him, so I told him he isn’t old enough, but that won’t hold water for long. He was terribly disappointed. He longs for the freedom and independence that driving affords most of us, especially in the rural community where we live. He was mad he couldn’t take driving lessons — and rightly so.

He has plenty of friends at school who will be driving soon, and he won’t understand why he can’t, too. This topic will come up again and again, and each time the answer will be “no.” It’s pretty unlikely that Alex will ever drive alone. He’s bright and capable in so many ways, but the split-second decision making and reflexes required for driving are likely beyond my son’s capability. I don’t know how to tell him that. I don’t know if he’ll understand.

While parenting a child with Down syndrome has brought us joy and delight — and we wouldn’t change Alex for anything in the world — there are still some things that catch us by surprise, and I wondered if that would ever change.

But then I realized there are so many things Alex can do. He can read and write, he’s an electronics guru (the go-to guy in our house when we can’t figure something out on our devices) and he can do any job you’d like.

We look forward to a future in which he can learn public transportation, live independently and hold down a job. He’s industrious and has much to offer to the world.

While he may never drive alone, the things he can do dramatically outnumber the things he can’t.

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What You Need to Know About the People With Down Syndrome in Those Hurtful Memes

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Dear Internet,

A couple of months ago The Mighty published one of my posts, and it went on to be shared on social media over 14,000 times! I was super excited and more than a little curious as to where all of these shares were coming from. So I took to Google searching for that picture of my gorgeous girl in the white dress featured in the post.

In hindsight, I should’ve known better. Of course you had lovely photos of kids with beautiful Brushfields spots in their eyes and links to blogs championing the successes of people with Down syndrome. But then there were the memes – pages after pages of images of people with Down syndrome plastered with hurtful phrases.

“My mom calls me special.”
“I can count to potato.”
“Mom said I have Get Down syndrome.”

Those are the tame ones. My stomach flooded with fear, rage and sadness — the kind of sadness that stays with you even after you’ve moved onto another thought and you’re forced to remind yourself why you feel so bad. I also felt ashamed – had I ever found anything like that funny before?

Internet, since having a child with Down syndrome I’ve known you to be a source of information, education, reassurance and comraderie. I guess I always knew the opposite was out there, but, Internet, why do you have to be so demeaning and hurtful? Will people who are innocently searching your pages see the Down syndrome I know or the one portrayed by these memes? I wish people would see our side of it.

I wish they would see Baby Emily, a heart warrior showing her amazing strength as she fights to recover from her multiple surgeries. Or sweet Josee, 3 years old and full of confidence, working the camera as she reads and counts for her Facebook audience of over 20,000. Or Sam and Mattie, best friends who, with the help of a Kickstarter campaign, just made a Spring Break zombie movie that is professional and gloriously mainstream and just what you would expect from any teenage boys.

I wish they would see my little Frankie. See her steal Grandma’s phone and knowingly run her pointer finger over the screen. Listen to her giddy laugh as she and her brother play. Watch her shove her unwanted dinner underneath her highchair’s tray as if she’s fooling us. Witness her triumphant first steps.

baby with Down syndrome smiling in a high chair
I know people sometimes question why a lot of us parents of children with Down syndrome choose to share so much of our little one’s lives. “Is it safe?” they wonder. To them, I say, it’s necessary.

It’s essential to show the adorable photos, the accomplishments and the milestones, as well as the ordinary moments. The public needs to see our kids reading and playing, attending school, making friends and just being kids. It needs to know the person in that photo that someone stole to make a hateful meme has a mother and a father, siblings, grandparents, friends and often an entire community that love them and stand behind them. It needs to know they are more alike than different.

baby with down syndrome sitting on a bed smiling
No one can hope to control you, Internet. But we can continue to feed you the wonderful stories and positive images that make up our lives in the spirit of hope and education. So that next time one of your users stumbles across a derogatory photo, they will simply shake their head and move along, knowing people with Down syndrome are not to be laughed at.

Sincerely,
Francesca’s Mom


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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