Category Archives: hero

My Challenge: Mardra


I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 

My Challenge: I am afraid of monsters.

As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination. 

No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day. 

The news is filled with them.  One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…

I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe. 

What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.

For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.

The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.

Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.

So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too.  A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.



I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”

Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.

The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.

I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.

I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.

But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
 

Marcus and his mom Mardra

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When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.


With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Knowledge is just as important as inclusion

Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.

Which is the whole point of the program.

Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.

All good, right?

Except the other day when it wasn’t. 

My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”? 

The child replied, That is X. He doesn’t talk.

Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.

Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.

X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.


I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.

That all children, typical and brilliant are all special in their own way.

I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training? 

There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges.  Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.

If we can not let a 5 year-old ask the question, how can the 18 year-old know? 

Bear with me…

This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack.  The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight). 

It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood. 


“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time. 

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them. 

Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.

For a thousand years you get to feel theirs right back at you.

And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance!


I messed up…

I messed up the mix-tape. Again. Surprised? I had a great post about Christmas music. On my list I had a hippopotamus, a donkey and Adam Sandler. Then I read a tweet from Jen and realized I missed posting last week. So I scrapped my list and started over, hence the really rushed mix-tape: Addiction.

I could take the easy Robert Palmer way out but I am up to the challenge! Here are the songs that say I am addicted to you:


I was thinking if some one was actually stuck on me. Ewwww.

He was so brutally handsome she got addicted to the fast lane?



Look if Kenny was addicted to me, I would come over. Like RIGHT NOW.


Sir Elton knows plenty about addiction!

How about you, what song says you are addicted to love? Join me over at Jen’s and link-up your mix tape.







There are heroes and then….

There are heroes and then there are SUPER HEROES. Those individuals who leapt buildings in a leaping bound, the wonder women with magical bracelets and an invisible plane.

Man, I’d like an invisible plane. That would be super cool.

When I was younger I wanted to be a member of the A-Team. I thought the Colonel Smith was the best, loving it when a plan comes together. Who wouldn’t have a crush of Faceman? I wanted to big brother like BA Baracus (I thought at least one of his necklaces would look good on me). And Madman Murdock? He was just like this Uncle I had…Anyway I thought, as a tween, I would be cool and safe as a member of the A-Team.



Then I grew up.

And I realized the superheroes are not that common. That a plan doesn’t always come together. That you need to sometimes be a BA to get things accomplished. I also realized something else. Superheroes come in all ages.

The woman who hugged another in an elevator.

The father who pushes his son every year in the Boston Marathon.

The soldiers near and afar who put their lives at risk every day so I can sit in my home and drink my wine.

The makers of my wine.

The grandmother who looked at a child having a temper tantrum and told the parents it does get better.

The doctors who saved my daughter’s life.

The therapists who enrich Boo’s life making her the best she can be.

The school teachers who have more patience than Saint Teresa.

The friends and family who answer my HELP ME calls.

The people who run into the emergency rather than running away.

But I do have one SUPER HERO….

Allie.



Who looks at her sister with love and empathy. Who has adored her sister from the moment they met.



The sister who braved multiple hospitalizations to see her baby sister. The girl that explains to other children that Boo has a “funny” pattern in her brain that makes her “special”. The girl who has attended so many therapy appointments that she can run her own.  Last week, after coming home from a sleep over, Allie took the time to go through Boo’s speech therapy:

Boo: I EKRJWORYOWEHFOFJSFROREEEEEEEEEE
Allie: I
Boo: I
Allie: Want
Boo: Want
Allie: To
Boo: To
Allie: Have
Boo: Have
Allie: Cookies
Boo: COOKIES!!!!!

This is a super hero at just nine years old. Allie possess the ability to calm her sister, to hold on while Boo deal with a hazmat situation, who calms a head-banging moment, helps her swing and jump. Allie is the protector and the “mad” girl who cracks Boo up with her antics.  Kind of like the A-TEAM all mixed into one little package.

It helps that she is cute beyond belief.



I hope to she maintains her membership in the hero society. I cannot wait to see how she changes the world.

Who’s your hero?




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