Monday, September 24, 2012

Hello Bully-- I'm the mom of a little boy some people consider to be a "retard"

Playgrounds and schools don't have an exclusive contract with bullies.  There is also no age limit on bullies. I've been to high school.  I've been to college.  I've witnessed and met many a bully in my time.

The question is always, "How do you respond to a bully?" 

Our family has a copy of "Chester Raccoon and the Big Bad Bully" and we read it before bed time.  In the book, Chester and his friends are terrorized by a badger at school who steals their balls and picks on them throughout the school day.

When they kids finally confront the bully, he suddenly backs down. He has nothing else to say.

That's the thing with bullies.  They aren't used to being confronted.

Last week I met a bully of my own.  I had heard this bully before.  He is one of those folks who needs a lot of attention.  The minute he walks into the gym you know he has arrived.  He is loud.  He is crass.  His conversations are ones that I would never want to be a part of, but because of his habit of talking loudly they are conversations that are heard throughout the gym.

Two weeks ago I heard him say to his workout partner, "You guys played that retard school." 

I paused.  I was pissed. Getting up to do a boot camp at 6am is no walk in the park and having to listen to this ya-hoo was more than I needed that early in the morning. Unfortunately, I didn't have the wherewithal that particular morning to say anything.

Then it happened again.  This time it might have been the 6am workout, it might have been PMS, whatever it was, I was fired up.

This guys makes his grand appearance into the gym and my little group is quietly grunting through our workout when I hear him clear as day say to his workout partner, "You're retarded". 

First time, shame on you.  Second time, shame on me if I don't say anything.  It was a very quiet morning.  Only about 8 of us total, but the second we got a break I toweled off my face and walked up to him with as much confidence as I could muster when confronting a bully.

I said, "Hi.  Excuse me.  I don't mean to bother you, but I just heard you call him a retard and I've heard you say that before.  My son is 2 and he has Down syndrome.  He has been through a lot in his short life including heart surgery and eye surgery and I absolutely cannot stand to hear people call someone else retarded.  It really drives me crazy.  I'm extremely sensitive to it and I don't want to hear it while I am trying to work out."

I don't know where this came from.  My heart was racing.  This guy is about 6'5'' and all I could think was that with his goatee and his large white teeth how much he resembled the Big Bad Wolf and how I felt like Little Red Riding Hood.  But it didn't stop me.  I said my piece and I moved on.  I tried to do as nicely as possible and I went home with a clear conscience. 

He just stared at me and said one word.  "Ok."

Do I want to be the word police?  Never.  I just want to work out at 6am in peace and not have to hear someone calling another person one of the most disgusting disability slurs around.

I decided that if I was trying to teach my children to stand up for themselves and what is right, then it is something I must also put into practice.

What would you have done?  What do you tell your children to say when they are confronted with a bully?  Is your answer different if it is physical versus verbal bullying?

Thursday, September 13, 2012

The Bravest Big Brother - Happy Birthday Thomas Henry

Sharing Dog Dog with Joey.
At some point over the last three to four months you have suddenly stopped taking your "Dog Dog" everywhere.  I just realized this yesterday as I thought about you turning four tomorrow.  I racked my brain trying to remember the exact date that you started leaving "Dog Dog" in your bed and carrying him down to breakfast every day. When did this happen? How did I not notice? Was I not paying close enough attention? 

Portrait of Tommy and Dog Dog by Nat.
For some reason, this loss of Dog Dog's presence in our every day life crushed me yesterday as I packed your bag for school. Last year we had to carry dog dog in the car every day to school and then at drop off we would put him in your backpack and then rescue him only 2 1/2 hours later when school was over.
Fingers in upside down and "dog dog".
Dog Dog stays in your bed now.  You have stopped sucking your two upside down fingers. In the blink of an eye you having started becoming a little man.  A little man who only wants to be referred to as a "big boy" or on other days as any one of a number of super heroes.  Today I was told to call you the Hulk-- because he is super strong is what you told me. 

You hear your daddy call me "Jenny" and that is what I hear you yelling when you are teasing me and trying to get my attention. What percentage of your day do you think you spend giving me a hard time?  70%? 80%? It's up there.  If anything, dear Thomas Henry-- you are a spirited big boy.

And if there is anything else that you are, that I know you so very much value, and that is strong. You are strong. You are brave. You are curious. You are kind. You are confident. You are loving. You are interested. You are challenging. 

At this point in your life you love super heroes and Scooby-Doo.  You cross your sweet little hands and say our dinner prayer with us. You are interested in reading and in letters. The other day you told me you could already read.  Did I mention your confidence? 

Here is the inspiration and directions for the cupcakes.

Last week I asked you what you would do if a stranger offered you a piece of candy.  You immediately replied, "I would take the candy, Mom." 

"No!" I yelled. "You never talk to strangers!"

"Okay, Mom.  I will take the candy and run.  I am super fast."

"NO! What if the candy is poisoned?" 

"Okay, Mom.  I will take the candy, throw it down, knock the stranger down and then run."

We are getting there. Did I mention your confidence? Your belief that you are strongest person in the world?

Three weeks ago we visited Joey's new school to drop off his tuition and you told me you wanted to go to school with Joey. I took you seriously and that is where the two of you are now.  When people ask you about school you say, "I go to Joey's pre-school." Did I mention that you love your brother more than anything?

This week we took Joey back to school for his second day of the 2's class. This time there was a new woman from the Community Partnership for Inclusion.  I dropped you off to your classroom (right across the hall from Joey) and I thought you were settled in, so I took Joey across the hall to his classroom.  I was in there for 10 or 15 minutes when I came out and found you and your teacher in the hall. 

You were worried. You were asking questions about the "new" person in Joey's room.  You wanted to know who she was and what she was doing with your brother.  Did I mention you are brave?  And strong? And compassionate?

I was confused.  How did you even notice there was a new person? How did I not notice you were worried. What else do you notice when I'm not noticing? Have we exposed you to too much? Have I made you worry about your brother? 

We took you in and introduced you to the new person and assured you that she was there to help Joey and that Joey was doing great.  It took a good 10 minutes to convince you that everything was okay and Joey was in good hands. I left the school an emotional wreck.  Worrying that you worry too much and wondering just how much you hear and how much you take in that we don't know. 

You've also found a new appreciation for all your cousins this year. 
We try to be sensitive, but not overly sensitive.  We try to expose you to some things, but nothing too scary (ie- no surgery visits so far.  Don't want you to fear hospitals).  We take you to some of the therapies and doctors' appointments when it is some of the major stuff so you have some idea where Mommy, Daddy and Joey are always going. I hope and I pray that having a brother with special needs will never make you feel left out or overly responsible.  I pray that your childhood is full of fun, light, sweetness and joy.  I pray with gratitude every night for having such an incredible little boy who instinctively loves and watches over his brother with incredible loyalty and devotion. 

Inspiring and motivating Joey at therapy.
Thomas Henry- thank you for the privilege of being your Mommy.  You are so very challenging sometimes and I love you for every ornery, amazing inch of the Big Boy you have become.  You also happen to be the bravest big brother I know. 

Thursday, September 6, 2012

Friends Don't Count Chromosomes: Sending Joey to an Inclusive Preschool

I have read that there are two gifts every parent should give their children.  One is roots and the other is wings.  Roots is for a solid home and symbolizes the foundation of the child's life.  Wings are the opportunity to explore the world and utilize the lessons learned at home. I think all parents do their best to provide the deepest and most meaningful roots possible.  I have found that for me, the wings are the hard part. Once you have a child with some health issues and additional needs, the wings become even harder to expand.  I had a hard time sending Tommy to preschool last year because he had always been at home, but this time, I had to overcome the fact that Joey doesn't walk or talk.  I had to overcome my personal fears of rejection and comparisons and prejudices. 

At age three (a year from now), Joey will be eligible for the Early Learning Program in Ohio. In our city, that program is five days a week from 8:30 - 11:00 am.  In each classroom there are some children with varying developmental levels as well as typically developing "peer models".

We realized that it would be incredibly difficult for Joey to go from no preschool to five days a week and started to search for a 2's program that he could attend this year to prepare for next year. Thus started our search for a pre-preschool for Joey. 

We approached one school and set up a meeting with the director.  The day before the meeting, she cancelled.  I tried to reschedule.  She cancelled again.  It took three cancellations for me to finally get the message that Joey attending that preschool was not something that particular director was interested in pursuing.  However, at least that director initially agreed to meet with me.  Two other schools I called just said straight out that it was not a possibility. 

As you may know, and I just needed reminded of, when God closes one door (or 3), he opens another one.

I reached out to the director of All About Kids Preschool and asked her about their 2's program. She immediately said that they would love to have Joey.  I mean literally-- without reservation and without hesitation, she said they wanted him in their school.  I was floored.  The wheels were in motion. Initially I decided I would keep Tommy at the school he went to because he really loved it and the teachers and all the people there. About two weeks ago the three of us dropped of Joey's tuition and registration checks.  Tommy asked me where we were going.  I said, "This is going to be Joey's school this year."  He looked me dead in the eye and said, "I want to go to school with Joey, Mom." 

More wheels in motion.  I was so hesitant to change Tommy to the new school, but he kept talking about it and once we learned that there was room in the 4's class, I signed him up. For the next week all he could talk about was that he was going to go to Joey's school. 

We made a decision as a family to try it out. We both have fears about the boys being at the same school-- more when they are older.  Tom wants Tommy to have his own identity and not feel like he has to always be looking after Joey.  I, on the other hand, completely want Tommy to always have Joey's back.  But I honestly see his point and I don't know what the future will hold for their schooling together or individually.  All I know is that for this one moment in time, my heart is overflowing with happiness that these brothers are together.

Once we mentioned this preschool opportunity for Joey to our Help Me Joe (aka- Help Me Grow) to our early intervention coordinator, she immediately started working on how to make this happen and make it happen well.  As part of the Community Partnership for Inclusion, Jennifer M., has gone out to the preschool, met with the director, helped supply seats and tools to help adapt some of the basics in the room for Joey to use. Her help has made this day a possibility.  I told her and the director, Julie, that this is our first opportunity for true inclusion.  Joey is in a "typical" preschool with all typical classmates.  

Part of what I did to try and help prepare Joey's teachers for him being a part of the classroom was to write an "All About Me" book.  I found this wonderful idea on this site called "Let's Talk - Down Syndrome" and I wrote a short 7-page (mostly pictures!) "book" about Joey that I had printed and bound at Kinko's.  If you would like to see an example, please email me and I will send you a copy of ours that you can use as a template.  Or you can visit, here for a great example from the above website.  My goal was to try and provide a positive background with plenty of photos to help provide a frame of reference and context for having Joey as a student.

Today she stayed the entire morning to work with Joey and help him figure out the room and make small adjustments for him as needed. 

School starts at 9:00 am and Tom and I tore ourselves away at 9:30 so the morning could progress without the helicopter parents lingering in the room.  Thankfully, Jennifer texted me about an hour later with a picture showing Joey hard at play to ease my worried mind.  Tonight she sent me an entire power point of photos from Joey's first day.  They are incredible to see.  Joey having a snack with his class.  Joey and the kids playing on toys. 

By the time I returned, Joey had snacks with his new friends, had washed his hands, played with the toys and participated in the entire morning. Will our school experiences always be sunshine and unicorns and lollipops? Nope.  But today they were and for that I am so grateful and so inspired by what inclusion means and what it can be when people are willing to put in a little extra time and effort.  I saw on one of our favorite blogs, The Chronicles of Ellie Bellie Bear, that friends don't count chromosomes...after what we saw today, we know it is true.

Have you had positive or negative experiences with schooling and inclusion?

Any advice you would like to share with other parents?

Happy 2012 School Year!