Monthly Archives: October 2013

Would you CARE?

It’s the last day of the 31 for 21 Challenge. I didn’t really make the goal of blogging everyday. However I was beyond happy to participate. As this is the last day I was thinking about Robert Saylor. How this young man with Down Syndrome lost his life because those who are there to protect were not trained to work with those whom have special needs.

Because while you might be aware of Down Syndrome you might not really understand it.

Then last week I read an article about the C.A.R.E. program. C.A.R.E. stands for Children and Residents Encounter program. It is the brainchild of the Colerain, OH police department. To my understanding, this program is designed to educate emergency personnel to those within their community with special needs. Be it Alzheimer’s, autism, mental health issues or behavioral issues.

Colerain has an estimated 1 out of every 150 residents on the autism spectrum. Chances are pretty great that at one point the emergency personnel will come into contact with a person who has special needs.

C.A.R.E. is a program where the family gives the emergency personnel information regarding the child’s (or adult) health and mental issues. The parent provides detailed information: are they on a monitor, do they have anger issues, what medication are they on, do they elope, what if anything do the police need to know if they are responding to your home or anyplace in town where that person might be in need of assistance.

Just think, if the police had known about Robert he might have lived. They would have been aware of his triggers, known he had Down Syndrome and been trained to deal with a person who has diminished capacity.

Yes, apologies to all the parents I just offended, but our children have diminished capacity and do not understand that  their behavior has unintended consequences. Sadly, neither are the first responders always educated.

One argument against C.A.R.E. is that we are giving up our children’s privacy. Do you really want your neighbor who listens to the police scanner (my MIL) know that your child is suffering from (insert your child’s diagnosis here).  Heck, I do it everyday here on this blog! But I see their point. Some parents are not “out” they don’t want the neighborhood to know that their child is autistic or bipolar or clinically depressed.

But in an emergency does privacy matter? If your child has suicidal tendencies wouldn’t you want the first responders to know? If your child is prone to throwing lamps in anger wouldn’t you want the first responders not to respond with force but with patience and kindness? If you child is deaf and does not hear the police say stop as they run in fear would you like them not to use force?

If you were Robert’s mom wouldn’t you have wanted the police to know that her child didn’t understand why he couldn’t just rewatch the movie? While I have never met Ms. Saylor I can imagine her anguish.

Upon learning about the C.A.R.E. program, I reached out to our local police and fire departments. I asked them about signing onto the program, or a similar idea. I explained how the Ohio police department minimized training costs and related expenses. They replied that this was one of their long-term goals.

Which I appreciate.

But I want more. I don’t want a goal I want a program. I want our police and fire to have a card on Boo. I want them to know her name, what she looks like and how to react should they encounter her during one of her eloping episodes.

Screw her privacy. Her life is more important.

To be preachy, so should your child’s. Forget their privacy or your embarrassment. Contact your local police and fire departments. Tell them about C.A.R.E. or another program that will protect everyone. If that doesn’t work, tell them about your child! Tell them you have a child in your home that has special needs and they NEED to have this information.

Think of Izzy and her mom, whom the area hospital knew and still couldn’t protect.

Think of your child and their temper tantrums. When they are out of control and you are doing the best you can but the neighbors call the cops to protect you.

Think of your child who climbs or wanders and the new neighbors do not understand that your daughter is autistic and does not realize they cannot swim in any pool they come across.

Think of your son who is manic depressive and might encounter emergency personnel during one of his psychotic breaks.

Truthfully, the neighbors and police and EMS are not wrong. When faced with an out of control person or a child that looks much older than they are developmentally, they have no other thought than to protect those in control. They will try to reason or restrain with compassion. But in fear for themselves and those around them they will also respond with force.

It is not anyone’s fault. Not your neighbor’s for calling the police, not the police for seeing an out of control person and trying to restrain them, not your child’s fault for having a disability and not your fault either. Ultimately we need to protect our children and those they come into contact. I think C.A.R.E. is a great start.

Think of Robert and know that could be your child.

Screw privacy and think protection.
 In Robert’s Memory and in Respect for a mother’s grief I end this month of Down Syndrome awareness in their honor.

The truth about Allie and Boo

When I first started blogging I was a little nervous about the world of blog. Who would I meet, how much should I share, would anyone even read my ramblings? I also wondered on the fairness of outing my children’s lives. Was it fair to them to tell the world that they are awesome but have bad days? Is it my place to tell some one in Australia (no offense, Bron!) that Allie had a bad day at school or that Boo had a meltdown?

Also, my husband think the internet is the devil and Facebook it’s spawn. That probably colored my thinking.

However I knew that Boo’s experiences were important to share. I knew that OUT THERE I would find some one, any one, who had the same what the heck am I doing  approach to life. Turns out I first met Kristi and then Joy and then a host of other characters (admit it, you are all characters). You don’t have to have a child, or a child with special needs, I just knew that I could reach out and help just one person not have to go through the uncertainty I lived through. I also hoped I would find some one out there that would tell me THIS is what Boo has, THIS is why she is so delayed.

Hey, if the science isn’t there the community might be.

If I touched just one person this blog would have been worth it. But I didn’t touch one person, I made connections with so many that this blog evolved into something more. More than Boo. More than a Mom who suffered from holy crapness. More than the tale of how Allie’s love for Boo transcends and teaches others that sometimes a person is just a person and all the labels in the world do not matter.

I found an extended community and began to feel weird that I wasn’t reaching out to those who love and actually know us if they saw us in the grocery store.

Then I decided to come out of the blogging closet. If felt wrong somehow to be hiding Boo’s accomplishments and stumbles from those who could have immediate impact. Her therapists, her friends, her family, her teachers. The people who might read this blog and say “Hey Kerri let’s try this….”

What I never imagined, though, is that I would actually meet my virtual friends or that real life friends would start calling them Allie and Boo.

I know most of you have guessed that Boo isn’t her real name but neither is Allie. Boo came from when she was in the NICU and I used to say, I know you have a Boo Boo but I am going to make it better (yep, I thought I was all knowing back then). Boo was my secret name for Bridget because in my heart I knew she was more than the Boo Boo. I knew that she would be awesome and spectacular. I would whisper to her, you are my Boo. Maybe not perfect in the conventional way but in the mom way. I love you and will cherish every moment of the time you are with me. This was before I realized she would survive the NICU. It was also during the moment when a NICU nurse asked me her name and I spaced. In my defense I was working on having a C-section 4 days before and about an hour sleep since then. I remembered the little girl in the Monsters Movie, Boo. She was afraid but not only overcame her fear she kicked butt. Bridget became my Boo.  If she could be brave at just a week old, I could suck it up. When I created this blog Boo was the natural name to call her.

Allie though, was different. Allie was Bridget’s approximation of her name. I know, I should have chosen Sunflower so that you would know that is not her real name. But I never imagined a time when one of you would meet her in person. I was trying to protect her identity and her privacy, to some extent.

But then I came out and someone called her Allie. She was kind of like, my name is….Then I met Kate and she gave me a weird look when I was telling a story to her Joe and realized I had never clued her in that Allie’s real name is something different.

I asked Kate what she thought about me coming all the way out with the girl’s names. She said that I have such an honest blog that it would be natural for me to use them. But that I would have some explaining to do! After all I use mine and David’s real name. I put everything out there, the good the bad the ugly and trust all of you not to judge but to offer advice and support. Why wouldn’t I trust you with the girl’s names?

So as of today, I may still call Bridget Boo. Sorry it is just kind of natural for me. But Allie will be her own person, just as she is in real life.

Friends, let me introduce you to Abigail or as she likes to be called Abby. The best big sister Boo could ask for and she is kind of a cool if sarcastic daughter as well.

So scary it’s good

Last week I totally messed with Jen and the Spirits. This week her directions were quite clear:

This week’s topic for our Halloween week is Scary songs. You may take full liberty with this topic my friends. Scary because of the content? The appearance of the performer or the song is just that darn bad. Or maybe you have some definition I haven’t thought of yet. Get on it. I wanna know why those songs scare you!

Full liberty? HA! I am so taking her up on that and not reading the rest of the directions. Scary got me to thinking how the kids of today have no idea what music is, and that is freaking scary. They are too involved with how the look or sound. Personally I don’t even think they listen to the lyrics.

If they did they would realize that all Rhianna does is repeat the same verse over and over again. Say Nah Nah, what’s my name….

But my friends who are not teeny-boppers, we know music that would scare the pants back onto Miley Cyrus. Singers that wrote their own music and it made sense. The fact that they also could never be featured on Teen Beat adds to their cred. Is Teen Beat still a magazine?

These are the scary artists that should make the “artists” of today shake with fear.

The ULTIMATE Harry Chapin.

Let’s face it, he had the face only a mother could love. Or a gold digger. But his songs? They moved you. They made you think. He was the ultimate storyteller. And you were willing to listen to the story over and over again even though you knew that Harry would leave Sally at her door.


You never messed with Leroy Brown and you didn’t mess around with Jim. His song Operator still brings chills to my arms. Can you see Justin Timberlake making a song that could last over 4 minutes and you didn’t change the station?

The BODACIOUS Heart. Can you imagine Nancy or Ann Wilson on the cover of a teen magazine? Those girls could kick Lady GaGa’s bare butt on the powerhouse Nancy’s vocal ability. Added to Ann’s guitar playing? In an era when girls really didn’t play instruments (yes, before the dawn of time I am that old).  They are Scary Women indeed and they could go crazy on your Baracudda. Rich would probably enjoy that….

The POWERFUL Crosby, Stills & Nash (and sometimes Young). Look at David Crosby. Yes, I know he is rumored to be the father of Melissa Etheridge’s children. Stephen Stills, um so not the handsome man. Neil Young? That is one scary dude. The saving face of CSN was John Nash. But that aside can you see the tweens swooning to Southern Cross or understanding the impact of their lyrics? That Chicago was more than a city and Ohio more than a state. These men believed in their words and used it to educate us all.


The LARGER THAN LIFE Queen. I’m going to say it here. Freddie Mercury was a ROCK GOD. The fact that Fat Bottom Girls would be a rap or country song today is just some of the magic that is Queen. Yes, their music is often used in movies and music today. But only because it is incredible. It lives on. But if Queen started out today? They kids just wouldn’t appreciate the talent. Trust me on this one. As I am writing this post Allie looked over my shoulder and asked: Who’s that? I explained, she said yeah I don’t really like that song. You can’t dance to it.

Kids, no appreciation. Yes, dancing music is nice. But songs are supposed to be more than a manufactured dance. They are supposed to move you.

Lastly in the spirit of Halloween (and probably Jen’s true intent) the DIABOLICAL Alice Cooper. Not only did he scare the crap out of my parents when I went through a “phase” he could probably make Bieber crap his pants. Although I remember him on the Muppets so I will always have a soft spot. Hmmm maybe he wasn’t so scary after all!

This mix to scare young people was brought to you by the ultimate DJ Jen and her crazy cohort in music crime Kristi.

Does God make mistakes?

This morning’s conversation after being late for school:

Allie: Mom, who made up the days of the week?
Me: Um…God

Allie: Well, he made a mistake.

Me: Um….really? I’m not sure God does that.

Allie: Well, obviously he did make a mistake. There are not enough days between Friday afterschool and Monday morning. He put in too many work days!


October Thanks

This week it is (again) easy to give THANKS. That is capital letter thanks, mind you. It’s been a very busy week let alone weekend.

10. My friend R answered my call, well text, this week. David was supposed to race with me this weekend. However he had some excuse called work. I have never raced alone so I asked R to go with me. And she did! We had a great day together.

9. “R” accomplished her goal of finishing a 5K in under 30 minutes! She wasn’t expecting to do it today.  Woo Hoo I was so glad to see her smile as she crossed that finish line. ‘

8. After the race I convinced “R” to go to attended the free after race celebration. We had a great hour just chatting.

7. The family was a plus 4 to another friend’s Halloween party invitation. It was a costume party and I am not quite sure who had more fun, the adults or the children.

6. We all wore costumes, even Boo. She was the child in PJ’s who should have been in bed. Also known as the one kid whose mother was smart enough not to attempt a costume that she would have to put into a car seat.

5. Boo showed everyone how to twerk.

(apologies, still haven’t figured out how to import videos from my phone. To see Boo twerking visit her Facebook page!)

4. We had a great time at Allie’s school Halloween celebration. 

3. My mother-in-law watched the girls so R and I could do the 5k. 

2. Crafty Auntie K did the pumpkin carving with Allie and Boo so I didn’t have to ruin another Halloween.

1. The true heroes of the world showed us the true meaning of bravery and what it means to ROAR. Thanks to the children, parents and staff of Dartmouth-Hitchcock Hospital Medical Center in Lebanon, NH for making my week.

Now it’s your turn. Tell me what you are thankful for this week.  After looking at those kids out rock Katy Perry I am sure you can think of just one thing this week to be thankful!

Ten Things of Thankful

Not everything needs a tag line

Dear Chicago Tribune,

I am not a resident of your city and in fact have only visited Chicago once in my life. But I am requesting on behalf of the parents in your community to redefine the newest tax approach for Kane County.

The premise is nice, from my reading, the intent is to increase property taxes in Kane County, IL to create funds to support individuals with developmental disabilities. As a mother of a child with special needs I usually support anything that will assist my child receive the services she desperately needs.

But to call it a disability tax?

How about calling it a social service tax? Or Community Building tax? Or even help thy neighbor tax? 

The services provided would include: education, therapy, training and other services to allow those with developmental disabilities the opportunity for independent living. These same individuals with your county’s support would then become a part of your working community.

As a home owner from Massachusetts, I agree taxes are out of control. After all, we are number 6 in the US for highest residential property tax rate.

I do not wish my child’s disability to be a ‘ tax burden’ on anyone. And I agree with the opponents who say that the tax code need to be redrawn and that the federal and state support should be better mandated.  However, I am thankful that she is a ‘social burden’ as she enriches everyone’s life she comes into contact. In some ways, I think this is a great idea. Instead of raising your taxes and you not really knowing where the money is being spent, you will see your tax dollars at work. The median household would be spending just $55 a year to impact lives in a meaningful way.

How incredible.

According to the article in the Tribune, Kane County has almost 16,000 residents whom this tax would benefit. I hope it does pass and is used as it is intended and not mired in the bureaucracy that seems to overtake good intentions.

I commend Kane County for taking a proactive approach to inclusion and support. I think it is beyond wonderful that you saw a need for your residents and are doing your very best to enrich their lives.

I just really wish you would think of a different tag line.

Things heard….

David has been working a lot of weekends. A LOT of weekends. In one way it is nice. I am sure I am not the only parent who experiences the household running smoother when the only dissenting voices don’t have an actual vote. On the flip side having another vote means that you are not losing your mind when you get a tad irritated when asked for the 100th time for a cookie before 9 am.

At one point I realized I was the one person in the house being unreasonable. But the girls should hold some responsibility. As I was slowly losing my mind this weekend it occurred to me that while I am probably not alone in wondering if it I ran away would they find me?

Here are just some of the phrases that popped out of my mouth this weekend:

No you cannot have a cookie (7:30 am)

Quit licking me

Yes Allie, you do a terrific jump rope in the living room. WATCH OUT FOR THE TV

You already had three donuts (8 am)

Boo, you cannot feed Bailey stickers. Or blocks or what the hell did you just stick in his mouth?

Is it wine o’clock yet?

Fine have a cookie (8:45am)


On the threshold of tweendom

The night before last Allie woke me up at 2:41 am. Yes, that is the exact freaking time. I threatened her that when she is in her early twenties I am breaking into her apartment at 2:40 am to wake her up by scaring the crap out of her.

What is it with kids that they SNEAK into your room only to put their face right in front of yours and whisper scream: MOM

Also, how come they never go to Dad’s side of the bed?

Back to my story….Allie had a good excuse this time. Somehow at the dead of night her tooth that has been hanging on for three months finally fell out.

At 2:41 am.

She asked me if she should put it under her pillow for the Tooth Fairy. I explained at 2:41 am that the Tooth Fairy’s list was already scheduled for the night. (I think I get props for thinking that quick on my feet at 2:41 am).

Last night after she brushed her teeth. Including the one that fell out, and I quote: I want the Tooth Fairy to see that I take care of my teeth. I asked her why she didn’t pay that much attention to the ones still in her head and got the eye roll.

The Eye Roll and The Tooth Fairy. She is on the cusp of tweendom but still has her imagination firmly in childhood.

I’ll deal with the 2:41 am wake-up calls for as long as she is anchored in innocence.


It’s a spiritual thing

Even though it is a little early, Jen has instructed her team of DJ’s to create a Twisted Mix Tape to celebrate Halloween.

First up, of course is Michael Jackson in Thriller.

Slowing it down a bit we visit the Ghost of Patrick Swayze. I fell in love with Patrick when he was in the Outsiders. The only Curtis with a normal name. Yep, I’m old but that has been established. But Ghost? Man that dude could spin a wheel.

Of course what is Halloween without the Monster Mash? Vincent Price he was the man of the Spirits.

Then there is the always reliable Ghost Busters. That was full of spirits.

Last but certainly not least, I recommend a little AC/DC to round out your list of spirits. Because once Jen realizes I completely messed with her touchy-feely Spiritual quest with a bunch of Spirits I will probably be on the Highway to Hell.

Yes, the rule was actually: Songs that are SPIRITUAL in some way. Since my songs contained spirits she cannot be mad. Right? Right, Jen?

PS–Suck-up Bonus points:  The Outsider’s character that Patrick Swayze played was Darrel Curtis big brother to Soda Pop and Pony Boy.  I remember reading the book WAY before the movie. I think I fell in love with all of the boys that were so bad they were good.