Why I’m Not an Optimist About My Son With Down Syndrome


“We can still come back and win. It’ll only take two touchdowns and a field goal,” I said to my grandfather during one of the many brutal bowl games of my childhood.

“No. They won’t.” He sat with his arms crossed, defeat accepted, but he still watched the game to the end.

“You’re a pessimist.” I moved to the floor in front of the TV.

“I’m a realist,” he said.

A realist, it was explained to me, doesn’t think the worst will happen every time like a pessimist does. A realist takes life for what it is and accepts the whole package. A realist doesn’t invest worry and emotion into a lost cause; a realist deals with what is real.

The other day I was thinking to myself, if someone had told me — that young 10-year-old me — “In 35 years or so, your son (to be) will release a children’s book. A really great one, in fact,” I’d have likely nodded my head. Sure. Sounds good. No doubt, I was an optimist.

If then, only nine years later, as I sat in the hospital room having heard the words “Down syndrome” about the sweet son I had only just met, would I still have believed that future? Would I have believed it possible that we’d create stories together and he would outpace my imagination and storytelling skills? Well, yes, I think I would have still said, “OK.” Because, as people said, I was an optimist.

Five years after that, while immersed in the stubborn bureaucracy of the public school system, I fought for a classroom that would integrate and challenge my son. I knew then that there was talent, intelligence and ambition wrapped up in the makeup of my boy, and these traits required a push from his educators. The school couldn’t/wouldn’t accept this and I lost. Neither my insistence of my son’s needs and skill sets, nor my attorney’s request, got through the bureaucracy. 

The “system” didn’t believe in my son Marcus, but his family and friends did. We moved on to the Madonna School, where defeat was not an option, and soon Marcus and I began creating together on the weekends.

Now, here we are. Marcus is a 25-year-old with Down syndrome who just released his first storybook for children, “Black Day: The Monster Rock Band,” with an animated short on the way. And this is just the beginning; there are more stories and scripts to come, I’m sure, because Marcus is a creative, talented person with stories to tell. I knew this all along. 

So, like my grandfather before me, turns out I’m actually a realist.

Follow this journey on Grown Ups and Downs and the Grown Ups and Downs Facebook page.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When a Couple at McDonald’s Said I Shouldn’t Feed My Son in Public


In 1993, we were living in London. My husband’s diplomatic career made us fearless about travel, even with two children, one of whom was medically complex with severe disabilities. We had an excellent treatment team at Great Ormond Street Hospital for Children and one day, my son Nicholas and I went there for a routine feeding tube change. The procedure was quick but painful, so I promised my boy a Happy Meal afterwards at McDonald’s as a reward.

With a shiny new tube in place, we walked across the square and down the busy sidewalk to the nearest Golden Arches. We found a table that could accommodate Nick’s small wheelchair and I ordered our meal. Nicholas is mostly tube-fed, but he loves to sample his favorite junk foods. We tore open the bag of food, marveled over his free toy and I began to carefully present small bites of burger and fries.

A young and uniformed staff member came toward our table looking frightened and ashen.

“Yes?” I asked. “Is everything all right? Is something wrong?”

He gulped. “I’m so sorry. That couple over there complained about you. They said you shouldn’t be here in a restaurant feeding your son. They said you should do that at home.”

My eyes widened. He continued, “I told them they had to move their seat. You stay here. I’m so sorry.”

Frankly, as they say in England, I was gobsmacked. I looked over at the complainers. They were old (probably the same age I am now). They were glowering at us – at me and my incredibly adorable 4-year-old son.

“Uhh?” Nick asked with a rising inflection. He wanted to know what all this fuss was about. “There is an older couple over there, Nick, who are not happy. I believe their mommies did not love them enough. I think they need our prayers.

“DEAR LORD…” I began with my head bowed and my voice amplified, “please forgive these very sad people who need more love in their hearts and more kindness in their actions. Amen.” Nicholas was laughing his head off. I’m not sure he understood what was happening, but there’s no question he “got” that his mom was mouthing off – in a good way, of course. We both giggled into our napkins and finished our fries with a flourish.

“Right!” I said to Nick. “It’s only 10 o’clock and I think we’ve accomplished a lot today!”

Over the years, we’ve had many dining experiences that have ranged from bad to excellent. But that day in London was definitely our “worst/best” one ever.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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.

How Starbucks Responded to My Problem With Menu Accessibility


One summer while I worked at a marketing research firm in the mall in my hometown, the biggest thing to hit our area since sliced bread moved onto the second floor near the food court.

Starbucks, the ultimate in fancy coffee goodness, became a central hub for the younger crowd. Frappes, fancy pastries and smoothies galore. And I wanted to partake in it.

My first Starbucks experience was one that became all the norm when it comes to trying a new place. Let a few ahead of me in line and pick the one thing that sounds good. As someone who is legally blind, the wall plaque menu board is not my friend.

“I’ll have a caramel macchiato,” said the girl ahead of me.

“I’ll have the same,” I would reply when it was my turn.

Good thing I love caramel.

But caramel gets boring after awhile, and my “three people ahead” never yielded the variety I wanted. I’m the kind of girl who doesn’t like to advocate for myself because people will treat me like I’m a baby. I’ve had it happen before and I hated the thought of dealing with it again.

One day while on a break from a long day of field studies, I decided it would be the day to try something new.

I go up to the barista and asked what kind of drinks they had. I received an answer I wasn’t expecting.

“We got a menu right up there.”

I then asked if she had a menu that wasn’t up too high so I could read it. She said no.

“The menu is up there. Can’t you read it?”

I turned about 50 shades of red, embarrassed and ashamed. I made a joke about a new prescription on my glasses that didn’t take and went with my go-to drink, a caramel macchiato.

A few weeks later, that visit played on repeat in my brain. Long before smartphone apps were mainstream, I had no other options when it came to ordering a drink.

I wrote a letter to Starbucks via its corporate website explaining my problems and suggesting a change. Thankfully, the response was amazing and quick. Within a few hours, they sent me an email back and a phone call. They promised better training to that location, and I was sent a calorie menu, which should’ve been offered to me as an alternative ordering method in the first place. I also received $50 in gift cards so I can experiment with the variety that up until that point that I never had before.

A few weeks later, I noticed my experiences at Starbucks were so much better. The baristas became more patient, the options were laid out better, and the drinks were awesome… and still are to this day.

Nowadays, with technology and access to the Internet at the drop of a hat, my foodie travels have gotten better for the most part. I still get the stares and the questions regarding my ability to read, but not as much as I used to.

And yes, I still get a caramel macchiato once in awhile, but the possibilities are endless and I couldn’t be more thankful for the changes made in that Starbucks back home — and elsewhere.

Follow this journey on Legally Blind Bagged.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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.

10 Things I Learned About My Son With Autism Through His Letterboard


This past year and a half has been nothing short of life changing for our family. My son, Ryan, who is 8 years old and has autism, began communicating with a letterboard this year.

Having Ryan spell out his thoughts has been by far the best thing to happen to our family (other than the birth of both of our children). I wanted to share with you the 10 reasons why this is, as articulated by Ryan himself.

1. He has written song lyrics in his head. 

He spelled out:

I AM IN MY HEAD. SO WONDERFUL YOU ARE, YOU ARE TO ME. NO ONE IS MY CHEERLEADER, MY FRIEND, MY CONFIDANT. NO ONE MAKES ME FEEL SO LOVED. YOU ARE MY EVERYTHING.

He then instructed me:

YOU ARE GOING TO TEACH ME TO WRITE MUSIC.

2. He wants his voice to be heard even if he cannot speak.

He has told me:

YOU INSPIRE ME TO NOT SETTLE FOR AUTISTIC SILENCE.

3. He loves his dad so much. 

When Ryan was apart from his dad on Father’s Day, he wrote via FaceTime:

DON’T UNDERSTAND WHY YOU ARE MY DAD AND YOU ARE NOT HERE ON FATHER’S DAY. YOU ARE TOO FAR AWAY. YOU ARE MY HERO.

4. He wants to be an autistic advocate. 

When we started a blog to spread autistic acceptance and awareness he suggested:

HOW ABOUT SOMEONE ASKS ME HOW TO MEANINGFULLY INCLUDE AUTISTICS IN LIFE? 

He answered that question on our blog. 

5. He likes to know what is happening next. 

He seemed down one morning, and I asked him what was going on. He responded:

MOM YOU ARE NOT CREATING A SCHEDULE FOR ME. SCHEDULES ARE HELPFUL TO ME. 

Stephanie Curry the mighty.2-001

6. He loves his family. 

Once we had our first family get-together after moving halfway across the country for my husband’s job and to be closer to family, Ryan spelled:

EACH DAY I HOPED TO BE AROUND FAMILY IN A LOVING WAY.

7. He is his own worst critic. 

On several occasions, after Ryan has gotten into something that he shouldn’t have, he has spelled out:

I AM NOT VERY PLEASED WITH MYSELF.

8. He knows that good behavior gets rewarded. 

When he had to wait to go swimming, he spelled:

MAYBE IN BEHAVING WELL I CAN GET IN THE POOL EARLIER.

9. Even if it appears that he’s not doing anything but self-stimulatory behavior, there is usually a purpose. 

I have asked him what he was doing while he was in his room and listening to “Thomas the Tank Engine” on his iPad (not watching it), and his reply was:

REALLY SOUL SEARCHING RIGHT NOW. 

10. His actions don’t always match up with what he means. 

Just this past week, I asked him if he was ready for his lesson.  His reply:

YES TO THE LESSON NOW.

The problem was that he wouldn’t go to the room with the table.  He laid down on the floor and wouldn’t get up. I tried to pick him up but I couldn’t. I tried again and failed. I then took his iPad and brought it to the room. He finally got up and followed me to the table. I went ahead with the lesson first and then asked him: “If you were ready to do the lesson with me, why was it so hard for you to come to the table?”

YES TO HARD. YES TO MY BODY NOT COOPERATING WITH ME.

“So is it OK for me to take your iPad and bring it to the table or to try and pick you up to get to the table?”

YES TO DOING THAT.

I can only imagine how much more I will learn and how much more the world around us will learn from my son. Even though I listed ten things above, the most important thing I’ve learned is that the sky is the limit for Ryan. 

Follow this journey on I Am in My Head.

When a Teacher Told Me ‘So Many’ Kids Shouldn’t Have Special Education Services


Recently I was at a social event making polite conversation with a high school teacher whom I’d just met. As it usually does, the topic of my children and their special education needs came up, and I explained what accommodations they have in place and also about how difficult it was to finally get them into the right educational setting. We really hit it off, and I felt I had a comrade in arms. After all, teachers are so often stifled when it comes to speaking out on what’s in the best interest of their students — especially here in the state of Michigan where about four years ago, tenure reform occurred.

I can’t often speak so freely to someone who “gets it” — someone who really understands what parents like me fight for when we attend Individual Education Plan (IEP) meetings and spend countless dollars on additional therapy and neuropsychology testing. Yes, we were on the same page in our fight for the educational rights of our most vulnerable students. Yes, we had a lot in common — that is until she said the following:

“It’s great that your kids got the help that they need, but I have to say, there are so many kids out there who should not have a special education certification.” 

What? Did she just say what I think she said?

I took a deep breath, put on my best poker face and replied, “I think it’s important not to disregard the input from parents, as they know their children more than anyone else does.”

We were quiet for a moment and then someone changed the topic and I just let it go. But what I wanted to do was ask her this:

Really, in addition to being a teacher, are you also a psychologist, a neuropsychologist or a pediatrician? Exactly what qualifications do you have to determine if a student should have a special education certification? Do you think parents enjoy taking countless hours off work to attend numerous school meetings only to listen to the so-called professionals pick apart their child and his or her abilities and make the statement, “He needs try harder”? Do you think any parent makes the decision to place a “special education” label on their child lightheartedly? Because I can tell you damn well that I did not.

Do you think parents are really that manipulative — that they would go through the more often than not hellish process of an IEP to gain some sort of accommodation for their average child to position them for better grades? Lady, let me tell you, I’ve attended approximately 24 IEP meeting in the past 14 years, just as many REEDs (Review of Existing Evaluation Data) and countless appointments for educational assessments and medical testing. During each one, at some point I felt as if I was being judged as an overprotective/overreactive mother. Trust me when I say, the IEP process is not for the faint of heart. This I know.  

There has been many a night when I’ve held one or both of my children in my arms as they cried because they felt completely lost and alone at school, and I’ve cried right along with them. As their mother, I promised them I would do everything in my power to make it better. I’ve kept that promise. Yes, they still have challenges, but they’re now growing academically and socially. In fact, it’s recently been said that they’re thriving. They finally see themselves as students and more important, they see themselves as worthy and they feel accepted. But they would not be where they are today if I didn’t take that time off work to attend IEP meetings, research and learn the special education laws, take them to the educational and medical assessments and be their advocate.  

Please know this: I’ve learned a lot over the past 14 years, being the mom of two medically fragile children with special needs. I’ve learned to follow my gut, to always listen to those little red flags because they’re usually right on, and I’ve learned that sadly, money is a factor in determining if a child receives the appropriate special education services they so desperately need. I’ve also learned that general education teachers most of the time have not received any special education training, and yet their classrooms are full of children on the autism spectrum, have a physical disability, live with a chronic illness or who are deaf or hard of hearing.  

But the most important thing I have learned — a lesson my two children taught me — is that no child ever wants to feel like a failure. Children naturally want to succeed, and I believe it’s our responsibility as adults, as parents, as teachers to work together to make sure each and every child has the resources and accommodations  they need to reach their fullest potential.

Father Gets Tattoo to Match Daughter’s Cochlear Implant


This dad will stop at nothing to make his daughter feel included.

Alistair Campbell, from Taupo, New Zealand, got a tattoo on the left side of his head to match his daughter’s cochlear implant, the New Zealand Herald reported. He didn’t want her to feel like the odd one out.

Charlotte, 6, had her first implant put in at the age of 4 in 2013, and has just recently had her second one put in. Campbell has no other tattoos, but wanted to show Charlotte that he could go through a little bit of pain for her.

The tattoo was a tribute — this was all about her, not me,” Campbell told Stuff, a New Zealand media site. “As she grows older, she’ll understand the love behind it.”

Campbell had it done on Tuesday, August 3, the day before Charlotte had the second implant inserted.

Getting through it together with his daughter...

Posted by The LAD Bible on Wednesday, August 5, 2015

 

When Charlotte saw the tattoo, she giggled, touched it and told him it was “cool,” the New Zealand Harold reported.

Campbell says he plans to grow his hair back over the tattoo but shave it off again for special occasions or when his daughter wants to see it.

h/t Reddit Uplifting 

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