And so we transition. Ready or not.

My son Davis is going to turn 13 in a couple of weeks and I’m dreading it. We had a simple moment the other day in our house that felt to me like the biggest transition of all. My husband quietly took my son, Davis, into the bathroom and gently shaved the shadow off of his upper lip.

Children with Down syndrome hit puberty more quickly than most typical children and this whisper of a moustache was a sad sight on our little boy who is growing up so quickly.

We have been blessed by the warm reception we have received across these past years.  Cute and special, Davis was always approachable and friends as well as many individuals we didn’t know were always extraordinarily kind. Although I don’t think we were attention-seekers, we were always attention receivers. Our home is filled with an abundance of gifts and our hearts are filled with an abundance of experiences and memories.

Even the woman who approached us in an airport and rubbed Davis’s head because she said he is good luck is remembered kindly, because her intention was pure and because I agree — I hit the jackpot when he was born. He makes me feel like the luckiest mother in the world.

6528caa3-6d97-423d-b3b2-0a976e32f748

As we head into his teenage years, I don’t think there’s much I would have done differently early on. When I ask myself that question I respond the same way for all three of my boys: I wish I would have enjoyed each moment more, lingered in each sweet hug a little longer, held on to my patience when I felt I was on the brink of losing it, trusted my instincts with more confidence and laughed with more joy. To have felt defeated at times by the pile of laundry on the floor seems so silly now. What was the big deal?

My other sons will head into adulthood remembering my short-fuse moments, but not Davis. He only sees the best in me at all times. I am perfect in his eyes, imagine that, this mother who has failed so frequently.  And so the gift is less about who he is, and more about who we are in his eyes. There’s no judgement, no comparing, no anger, no disappointment in us and in this world that is so ready to point to our shortcomings and tell us we’re not moving quickly enough and we aren’t enough.

He tells us that we are. And for this, we are forever grateful.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

RELATED VIDEOS


I’ve often heard special needs parenting requires a thick skin. However, this mama’s skin feels pretty thin much of the time.

My own momma used to tell me I “wear my heart on my sleeve.” So my exposed heart gets hurt, and the skin under my heart-covered sleeve is fragile. And I become weary. Weary of the continuous fight. Education, services, therapies, specialists, doctors and the gamut of who and what is needed to simply sustain “special needs life” overwhelms me at times.

My child, Joshua, who cannot speak, possessing the cognitive skills of a toddler encased in a pre-pubescent body, often expresses his frustration through unexpected meltdowns and constant, loud stimming (self-stimulating behavior).

Learning a simple skill requires constant repetition. Nothing comes easy for him.

Heart defects and respiratory problems loom in the back of my mind, as well as the risks of certain diseases more common in a child like mine.

I’m a guard keeping constant watch over the delicate, yet mighty fortress that is Joshua.

Other parents deal with similar issues. Some less. Some more.

Many watch helplessly as their child suffers from multiple seizures daily. Others cannot leave their home because of health or behavioral problems. Others practically live in a hospital, as I did for several years. Surgeries become commonplace. Others change feeding tubes, haul wheelchairs in and out of vans and struggle to get through doors while onlookers do just that — they look.

Penetrating stares and flippant remarks seem acceptable and even appropriate. Name-calling and jokes are merely a Facebook newsfeed, doctor’s office or grocery store aisle away.

“Sit down! What are you, retarded?” yells a father at his running children as my husband sits waiting for an appointment.

“You know, I have the opposite problem. All three of my children are highly gifted,” boasts a mom as I push Joshua on a swing.

“You do know he’s sucking his toes,” says a woman disapprovingly to my friend.

“You must ride the short bus,” says a guy driving an airport shuttle to my friend whose son also has Down syndrome.

“There’s no such thing as ADHD. That’s just something lazy parents make up because they don’t want to discipline their children,” says a mother who has children with no such issues.

We deal with insensitive bedside manner and quietly nod as doctors and specialists give their “expert” opinions.

“You know he will be moderately to severely mentally retarded. You may want to reconsider terminating your pregnancy because you are so devastated,” says the obstetrician. To me.

“Your son is too profoundly mentally retarded to go to that school,” says a specialist. Again, to me.

Memes calling people “retarded.” And my friends “liking” them.

Look at my heart. On my sleeve, wet with tears for my precious boy and all those like him who would simply hug and smile at someone who called them that or posted that picture.

I have cried to the Lord in my most raw, real moments before Him that he picked the wrong person to do all this. Because I don’t have the stamina, the fortitude to withstand all that goes with this journey.

But I don’t believe God makes mistakes. I believe He chose Joshua for me.

His life is worth every single hard thing I must do. Or hear. Or read. Or even ignore.

I believe God’s grace enables me to turn the other cheek when I want to scream, “You don’t live my life!” He has entrusted me with much.

Often the most difficult thing is not what I must do for my son, but what I have to hear about him.

But hurtful comments and careless words are no match for his smile.

And I realize I am able because His power is made perfect in weakness. And while my heart my lay open for all to see, I know who holds it. And as long as it beats, it will always be vulnerable as not to harden to the harshness of this world, but to soften the hearts of those around me.

Follow this journey on Spinning Plates.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


When I found out my son would be born with Down syndrome, I worried he would be diminished by others simply because of his diagnosis. I feared he wouldn’t be given a fair chance and dreaded the day he would be made fun of, boxed in or called “retarded.”

He’s only 3 years old, and while he has certainly been boxed in a time or two, I’m grateful no one has openly used the R-word to define him. However, I’m not naive. I anticipate he will inevitably face discrimination, which includes the very real chance he will at some point be called retarded. People can be cruel, especially when they aren’t open to or understanding of differences. I know I can’t protect him forever, and when that day comes, my only job will be to help him through it — just as I will for my daughter whenever she feels sad or misunderstood. 

I want more than anything for all of our children to grow and thrive under an umbrella of equality, acceptance and understanding. Children of today have opportunities others would have never even dreamed of, and I’m so thankful my son has been treated with love and respect in his lifetime.

I am proud of how progressive our society is becoming on the issue of disability, and I am pleased that a majority of people know labeling someone as “retarded” is derogatory, maligning and harmful.

What many people may not know, however, is that using the word retarded at all — even conversationally — can cause great damage.

People use the word all the time in passing. I hear it in music lyrics, television shows and overheard conversations. People at the grocery store casually throw it out there, and even my friends and family say it: “I’m retarded,” “That’s retarded,” “Don’t be retarded.”

Oftentimes, if a person knows me, they will immediately catch themselves: they either stumble a bit and keep going or clam up and glance in my direction. Most people are well-intentioned and mean no offense when they say the word. Some are even contrite and offer me a sincere apology over the slip.

But here’s the thing: I don’t want people to apologize for using the word retarded. Apologizing implies that there is something to be sorry for — it implies my son is retarded.

I don’t believe my son is any such thing at all. Yes, we could insert a debate here about the actual definition of the word: slow or limited in intellectual or emotional development or academic progress. But words are not people, and I don’t think any of us would want to be defined by a single word, diagnosis or any other arbitrary standard against which we must be constantly measured.

Personally, I don’t want to give credence to a word that is so limiting. I don’t want to give it wings or feed into the untruth that one weighty definition holds.

What I want is for us to find a better adjective to use when we want to describe something as silly or slow or forgetful. In fact, those exact words will do the job just fine. While they are descriptors, and could each be used to delineate us all at certain points in our lives, they are not supremely defining. They don’t coat with a thick, viscous oil and label us in a way that it becomes impossible to extract ourselves.

Retarded does that.

Retarded had a specific meaning that has been antiquated and lost over time and now is just hurtful. It is a blanket label that keeps the people defined by it from reaching their fullest potential and likewise keeps those who use it from reaching theirs. It’s a word that prevents us from getting to know each other as individuals — specifically from getting to know those whom society deems a bit different. People like my son, who may be born with a diagnosis that requires specific interventions, therapies and tools, but who are — in most cases — not at all slow or limited.

I don’t want people to stop using the word retarded for me or my child. I want them to do it it because they understand that people are not defined by the circumstances in which they were born, but by what they do with those circumstances.

I want us all to acknowledge our differences, treat one another other as equals and work toward seeing the bigger picture: Together we have the ability to change the world for the better.

It doesn’t matter how fast or slow we go, we are all worth more than one word can convey. And we all have the equal desire to be included, accepted and loved.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


Christmas cheer is for people of all abilities.

The December issue of Good Housekeeping in the U.K. features 8-year-old Natalia Goleniowska, who has Down syndrome, dressed as an angel. She posed beside her mother, Hayley Goleniowska.

unnamed-1

Natalia, or Natty as she’s called, lives in Cornwall, England, and has been modeling for about four years. She and her mother posed for the magazine’s December edition during a London photo shoot in August.

unnamed
Image courtesy of Good Housekeeping UK / Katie Wilson
The media communicates to the masses what is acceptable, what is ‘the norm,'” Goleniowska wrote on her blog, “Downs Side Up.” “The fact that the UK’s most widely circulated glossy magazine has featured a child with a learning disability as an angel in their Christmas edition is very important news indeed.”
hDAR26Nm
Natty and her mother in hair and make up for the shoot. Photo by Kelly Hearing Dog, courtesy of Hayley Goleniowska.
Christmas is a special time for Natty and her family. Natty was born three weeks early, but her original due date was on Christmas Eve. She’d to spend three weeks in neonatal care before her family could take her home.
IMG_5603
Natty getting her hair done before the shoot. Courtesy of Hayley Goleniowska.

We hope people see that children with Down’s syndrome are like any other, they enjoy Christmas and dressing up and acting in their nativity plays alongside their peers,” Goleniowska told The Mighty in an email. “I hope anyone with a new baby feeling worried for their future, perhaps going through a difficult time with their child in neonatal care as Natty was, will find hope in our story.”

Related: Big Sister’s Drawings Help Others See the Beauty in Down Syndrome


A&E Networks recently released a preview and clip (below) from its upcoming new show, “Born This Way,” a documentary series about young adults with Down syndrome.

7t4a2292
Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Set to air on Tuesday, Dec. 8, “Born This Way” will consist of six hour-long episodes featuring seven people from Southern California with Down syndrome. The show will follow them and their families as they pursue career goals and romantic relationships, form friendships, overcome obstacles and make their way in the world.

See the preview below: 

A&E released two previews on their website as well as a sneak peak of an episode about Cristina and Angel, a couple who want to get married and live independently together.

See more on Cristina and Angel in the clip below: 

 

“Born This Way” will air on A&E Network starting Dec. 8 at 10 p.m. ET.


Years ago, John Silk, from South London, ran his own successful recruitment business. He was a Porsche-drivng businessman with a lucrative career and not a lot of free time. Then one day he gave it all up to spend time with his daughter.

Vicky Silk has Down syndrome and a heart condition called Eisenmenger’s syndrome. Doctors gave her a life expectancy of 15 years when she was just 8 months old, according to the Mirror, but have now extended it to between 35 and 40 years. She’s 22 years old.

John Silk used to see his daughter only on weekends after his separation from Vicky’s mom, but then Silk decided that wasn’t enough. He and his wife, Gerry, quit their jobs and began saving and doing odd jobs to take Vicky on trips around the world. The change was a 90 percent salary cut for Silk, according to The Daily Mail.

The couple began using coupons and got part-time jobs to help save up. Silk also worked as a school bus assistant so he could earn some extra money and see Vicky more every day.

Over the last 14 years, the family has gone on 24 trips to 15 countries. They’ve been to Hollywood, gone scuba diving, swam with dolphins, flown over an active volcano and more.

I wanted to show Vicky the world,” Silk told The Daily Mail. “All I wanted was to see her smile and gasp in amazement. So every penny I earn now pays for a holiday for her… we couldn’t be happier. Vicky has taught me what life is about.”

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.