Tuesday, April 23, 2013

You Knew You Were Having a Downs Baby and You Didn't Terminate? How to Respond to Rude, Crude and Crazy Comments

"You knew you were having a Downs baby and you didn't terminate?"

I swear, this is a direct word for word quote from a conversation I had just a few weeks ago. Sometimes things like this take me time to digest. I tell my mom about them. I tell my husband. I tell my best friends and then I kind of put it in the back of my mind for awhile until I can actually digest what transpired. This post could have easily been titled "Crazy shit people say to me without thinking", but that seemed a little extreme. And yet, that is what goes through my head when people say things like this. It's not every day. It's not every other day. It's usually about once a week. Sometimes I can go two weeks without something this crazy. . .and then I see this little boy and I completely come apart and don't understand why or how anyone could ever think such a thing, let alone say such a thing out loud to his mommy.

Dorothy and Joey hanging at the juice/snack bar.
The thing the scares me the most is the source of this comment. This came from a highly educated and worldly individual. The entire conversation was surreal. They said, "Tell me more about Down syndrome."

I said, "It occurs when an individual has an extra copy of the 21st chromosome, thus trisomy 21. The person has three copies of the 21st chromosome instead of the typical two copies most people have."

They said, "I knew that. I just wanted to hear how you said it."

Awkward pause.

They said, "Now, you knew when you were pregnant?"

Me, "Knew what?" 

Those were the words I spoke, but inside my head I was struggling to remain standing up and not drop the phone. I knew in those surreal few seconds exactly where this conversation was headed and I did not shut it down because I was in shock. In my head I thought, "There is no f-ing way you are about to say what I think you might say."

They said, "You knew you were having a Downs baby and you didn't terminate?"

Me, "No. We did not terminate. Joey is sitting in the kitchen right now."

Inside my head a million thoughts and reactions were sprinting through. Thoughts like, "If you only knew how many times we were asked if we wanted to terminate. If you only knew how scared we were to have a child with a disability. If you only knew the struggles we went through when we were told at 13 weeks Joey would never survive a pregnancy and we should just end it before it was too late. If you only knew how I almost didn't have the precious baby who is sitting right here, right now because of people like you and people who scared the crap out of us about having a child who has an extra chromosome. If you only knew."

But I can't say things like that in moments like this one. I have to be unfaltering in my strength. I have to be strong in the face of ignorance. I have to stand strong and try to continue to show the world that one extra chromosome is absolutely nothing to be afraid of.

The craziest part of this story is that this happened not only once, but twice. TWICE! Within weeks! The second person who asked me almost the identical question was a mom of a child with a disability. You could have knocked me over with a feather. We met at a wine bar and started talking about kids and when she found out about Joey and how we knew before he was born that he has Down syndrome she literally said, "You knew he had Down syndrome and you didn't terminate?" 

Is it a Down syndrome thing? Is this what the general public thinks about Down syndrome? I am trying to figure it out and I am having a really hard time. How do you respond to a comment like this? 

The Incredible Tommy and Super Joe at the hospital checking Joey's thyroid, CBC, RBC, WBC.
The thing is-- and there is a thing. The thing is that having a child with specialized needs comes with stuff. It just does. There is stuff. Some days the stuff isn't really that much. Some days the stuff is too much. Parents of children with special needs don't want you to feel sorry for us. We don't want you to feel sorry for our children. We would like people to know that there is a lot of "stuff" going on. For some of us it is multiple doctor and therapy appointments. For others it is medical equipment and specialized support gear. For some it is serious illnesses and prescriptions to manage and keep track of. For others it is trying to figure out our child's schooling or job. There is stuff. For parents of kids with Down syndrome there is a variety of "stuff" at any time. For almost 50% of us there are congenital heart defects to worry about. For at least half of that 50% there is heart surgery and a lifetime of care making sure our children don't ever get too sick or put too much stress on their hearts. 

Super Joe leaves nothing behind. 110% every day!

Then there is the issue of cognitive, language and verbal delays. This is stuff. Stuff we think about constantly in the back of our minds even as we try to navigate the regular every day stuff that everyone has. There is always the leukemia and dementia and Alzheimer's stuff that also haunts the back of our minds. We try to live one day at a time and appreciate every single second without letting that stuff fill our minds and hearts with worry, but it is almost always there in the back of our minds-- some of the stuff.

There is the concern of whether or not our kids will have friends. Will they fall in love? Will they live on their own, in a group home, in an apartment, with friends, with family, with us? Will our kids have a job, enjoy their job and feel fulfilled. This is the stuff we all worry about with all of our children regardless of special needs. However, for those of us who are parents of kids with extra needs-- this is more of the stuff we think about. That we worry about despite our most positive attitudes and most sunny outlooks. See, we have to be strong. We have to be strong for our other children. For our families. For our spouses. We have to be the one who says it will all be okay no matter what happens. We will manage the stuff.

I read the following article just a few days after my insane "termination" encounters, but I literally printed it off and put it in my purse. I have memorized a few favorites such as, "excuse me", "why do you want to know?" and "why would you say that?". What I love about this amazing list from one of my new favorite blogs, is that these can be used in all sorts of uncomfortable or awkward situations! 

One of my dear friends has beautiful children who have amazing and beautiful names and she is constantly getting remarks about their names-- this is perfect for that. Nosy strangers? Pick one of these! Intrusive comments? This is your list! This is from the Friendship Circle Blog: Special Needs Resources for Parents & Educators.

How to Respond to Unhelpful Comments: Top 10 Comeback Lines For Individuals With Special Needs

It happens sooner or later to just about everyone who lives with a disability: someone will say something nosy, rude or truly offensive.
It may help to have a response prepared for that day.  Having that comeback line at the tip of the tongue gives a little edge of confidence that actually prevents people from saying rude things in the first place.  Here are ten simple responses that work in real life situations.
10. “Excuse me?”  Miss Manners says that this is always the most polite response.  It causes the person with the original comment to pause and re-think his words.  If he repeats the rude comment, simply repeat in a sweet voice, “Excuse me?”  Keep going with it until the light bulb switches on.
9. “I’m sorry that my (or my child’s) permanent disability has caused you a temporary inconvenience.”  One of my buddies uses this line, and it is a conversation-ender.
8. “Thank you for your concern.”  With a smile.
7. Silence.  With a smile.  And walk away.
6. “Why do you want to know?”  Sometimes it is necessary to answer a question with a question, especially when you are cornered by a personal question on a delicate topic.
5. ”Why would you say that?” Force them to think about what they just said.
4. “Nothing is wrong with her.  Is something wrong with you?”  Ask with genuine concern, without sarcasm.  Often the person is asking because of a family member with a similar condition.
3. “Yes, he can talk.  He can also hear and understand everything you say about him.” For just a little guilt trip.    
2. “I respectfully disagree.” 
1. “I have (or my child has) an equal right to be here.” This is the line I’ve been saving all these years – but I’ve never had to use it in any of the many, many awkward public situations I’ve found myself.  My belief in equal rights is what makes me stand taller.
What is your standard response to unhelpful comments or questions?  

Thursday, April 11, 2013

We Take Care of Our Own, #JUSTICEFORETHAN


We Take Care of Our Own- Bruce Springsteen
I've been knocking on the door that holds the throne
I've been looking for the map that leads me home
I've been stumbling on good hearts turned to stone
The road of good intentions has gone dry as bone

We take care of our own

Where're the eyes, the eyes with the will to see
Where's the hearts that run over with mercy
Where's the love that has not forsaken me
Where's the work that'll set my hands, my soul free
Where's the spirit to reign rain over me
Where's the promise, from sea to shining sea

We take care of our own

What happened? Why are we uniting?

We unite because we care. We unite because we will not rest until individuals with Down syndrome are valued and respected as capable human beings who deserve the same exact civil and human rights as everyone else.  We unite for #justiceforethan and his family. We unite because we all deeply fear that this could have been our child. We unite as mothers, fathers, sisters, brothers, friends and teachers of someone who has Down syndrome. 

As I wrote about in a post called, "Jesus Called Out for His Father, Robert Ethan Saylor Cried Out for His Mother," Robert Saylor was shackled by 3 sets of handcuffs and put face down on the floor of a movie theater in Maryland because he did not want to leave the theater. Robert Saylor also has Down syndrome. He died that day. The people who killed him will not face any charges. To read a full article on what happened, visit here. This is why we are uniting for #justiceforethan.

How to Rally!

Tonight the Down syndrome community unites for a Twitter Rally: Thursday, April 11th:
6pm PST
7pm MST
8pm CST
9pm EST

Cowgirl Up! @DS_CowgirlUp will be there tweeting away.

Have your Twitter Handle sheet ready along with your TweetSheet. When the clock strikes in your timezone, log in to Twitter and start tweeting!

Need a Twitter tutorial? Here is an excellent one. Need inspiration on what to tweet? Visit With a Little Moxie for these ideas by Melissa Stolz:

“Join us in our push for #justiceforethan”
“Love someone with Down syndrome? Join us in our push for #justiceforethan”
“Disability rights are human rights. #justiceforethan”
“Death ruled homicide, cops walk free. We need #justiceforethan”
“Down syndrome isn’t a cause of death. #justiceforethan"

Here are additional ideas from Cowgirl Up:
  • Civil rights are for everyone. #justiceforethan
  • Disability rights are civil rights. #justiceforethan
  • 3 pairs of handcuffs killed an unarmed, disabled man. #justiceforethan
  • Zero Dark Thirty was the time of death for an unarmed, disabled man. #justiceforethan
  • We take care of our own. #justiceforethan


Sharon Stone: @Sharonstone_
Jennifer Lawrence: @ImJenLawrence
Diane Sawyer: @DianeSawyer
Lawrence O’Donnell: @Lawrence
Rachel Maddow: @Maddow
Chris Matthews: @hardball_chris
Sean Hannity: @hannityshow
Bill O’Reilly: @oreillyfactor
Greta VanSusteren: @gretawire
Sarah Palin: @SarahPalinUSA
Rick Santorum: @RickSantorum
Rep McMorris: @cathymcmorris
Rep VanHollen: @ChrisVanHollen
Rep Sessions: @PeteSessions
Anderson Cooper: @andersoncooper or @AC360
CNN: @cnn
Lauren Potter: @TheLaurenPotter
Jane Lynch: @janemarielynch
Jamie Foxx: @jamjamiefoxx
Albert Pujols: @PujolsFive
Jon Stewart: @itsmejonstewart
Stephen Colbert: @StephenAtHome
The President: @whitehouse
FBI Press: @FBIPressOffice
DOJ: @TheJusticeDept
Oprah: @oprah
Martha Beck: @MarthaBeck
Zero Dark Thirty: @zerodarkthirty / #zerodarkthirty
Katie Couric: @katiecouric
Ellen: @theellenshow
Nicholas Kristof: @NickKristof
Human Rights Watch: @hrw
Global Down Syndrome Foundation: @GDSFoundation
Bruce Springsteen: @springsteen
Kathryn Bigelow: @KBiggyBigs (does not appear to be active though)

Wednesday, April 3, 2013

Do You Remember When You Left Me? When Siblings Have Surgery.

It was an innocent conversation on the way to church on Easter Sunday.  My mom, Tommy, Joey and I were in one car while my dad and Tom were in the other car. My mom casually mentioned, "This drive reminds me of going with you to the hospital." And it does. It's the same way we went for ultrasound after ultrasound as well as the births of both boys. It's funny when you visit a place what memories are stirred up by the different landmarks.

As I am starting to learn more and more, Tommy was listening much more closely to this conversation than we realized. Lately we are noticing that he hears everything. He comments on some things, but definitely hears everything. 

From the backseat pops up a little voice, "Mommy, I want to go to the hospital for Joey's next surgery. I want to go to all of his surgeries. I want to go to every one of them." I sucked in a deep breath. 

"Do you remember when you and Daddy left me for a long time when Joey had surgery?" he asks without a trace of guilt or anger or reproach in his voice. He is just speaking the facts.

Do I remember? Oh, do I remember? It was one of the hardest things I have ever done in my entire life (other than fire-fighting training in Officer Indoctrination School--that was pretty hard and scary--I have a LOT of respect for firefighters). I remember that almost two years ago we had to figure out how we were going to manage an out of state heart surgery for Joey and what we were going to do with our 2 1/2-year-old (Tommy) while we were up at the University of Michigan C.S. Mott Heart Center. 

We went back and forth. Back and forth. Take him. Leave him at home. We didn't know what to do. We knew that it would be intense and would need a lot of concentration and energy to take care of Joey and be there for him pre-surgery and post-surgery. We knew that a hospital isn't the best place to have a 2 1/2-year-old. We didn't know how long we would be there. We didn't know how well Joey would do. We honestly didn't really know anything. I read every blog I could find and tried to be as "prepared" as possible, but at the end of the day, we just didn't know.

So I respond, "Honey, I remember we had to leave you at home when Joey had his heart surgery, but that was because little kids were not allowed in the hospital and there were a lot of wires and machines." It was the best I could come up with on the fly.

"But, Mom. I'm a big kid now. And I won't touch anything. I promise," Tommy says from his car seat looking earnestly into the rear view mirror trying to catch my eye and trying to get me to see his side. 

I think back to the 9 days we were apart. One of the hardest times our family has ever been through. Leaving one child behind at home to be with our other child while he had heart surgery in a different city and state. We had never been gone that long from Tommy- ever. The days were long, the nights were long, the process was long. It was beyond exhausting. Sleep-deprived, sunshine deprived, sanity deprived we went outside once in those 9 days. I vowed that Joey would always have one of us by his side so he wouldn't be scared. 

We knew Tommy would be okay. We ultimately decided that it would be best to have him stay in his familiar environment at home instead of cooped up in a hotel. We knew he and Lolo would do great. Luckily we had Lolo, Miss Kelly, Miss Shannon and other friends and family who all hung out with Tommy and distracted him while Mommy, Daddy and Joey were gone. The minute we checked into the "Med Inn" we knew we had made the right decision. Joey's pre-op day consisted of nine hours of appointments and an almost cancellation of his surgery because his blood work. 

It was brutally hard not to be together during those 9 days. I had not realized how much I rely on little Tommy to bring sunshine and levity to our lives. To provide our comic relief and joy when things get too serious (like Joey's most recent blood work-- we go back again in 2 weeks to have it re-checked). 

He has never really mentioned that time before. It is a sign of so much. A sign of how much more he understands. A sign that Joey's "adventures" affect Tommy as much as they affect us. As sign that we need to be mindful and continue to respect his role and his need to understand what is going on in our little family.

He wasn't going to let the conversation go until he had my word that he could go to all of Joey's surgeries. 

"Tommy. Of course you can come with us. But, it might be very early in the morning and it might be very boring while we sit there."

"I don't care, Mom. I want to go. I want to go to all of them. I don't want you to leave me again," he replied.

Hot tears stinging my eyes I couldn't look over at my mom because I knew I would lose it, so I just looked in the rear view mirror and nodded, "Ok, Tommy. You can go."

I try to do this with therapy and different appointments, but it seems that the time has come to bring Tommy to one of Joey's surgeries. His next surgery will be another eye surgery. His third in ten months. Not nearly as invasive as his heart surgery and also out-patient. Should be a good opportunity to bring Tommy along and help satisfy his curiosity. 

We have been trying to protect him for so long and will continue to try to do so, but I also want him to know that we hear him and we respect his desire to be a part of it. We respect their love for each other. Their brotherhood. Their bond.