Category Archives: parenting

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.





I’m taking the easy way out….

Today I am failing as a mom. I am taking the easy way out. No, this isn’t a post for you to say Kerri you are fine, stuff happens. I am not looking for you to make me feel better because I do not deserve it. Because a mom isn’t supposed to be selfish. A mom is supposed to put her pain, her failings, her fears and her sadness aside for her child’s joy.

But I am not doing that today.

Today I am hiding my head in the sand, okay my body at work, and letting David take Boo on her field trip. Last year, I took Boo and we went to a pumpkin patch and apple picking. This year it is the same trip and I am bowing out. This is Boo last year:

You might not be able to see it, but there are tears running down her face. I let her go at her own pace (way behind her classmates). When we got to the patch all the kids were running around, she was overwhelmed. By the dirt, by the pumpkins by the noise, by who knows what. Her teacher came back with us so we were not all alone but by the time Boo got her pumpkin everyone had proceeded to the apple orchard. Again Boo tried but she was in her own world. She hated the field trip and I felt awful for making her go outside her comfort zone, even if it was what she needed. So I held back the tears (incredibly thankful for sunglasses) as the teacher gathered all the kids around for the sign along. Boo was there but not there. Her mind tired and I saw her retreating into herself.

The field trip ended and we left the farm. I cried all the way home. It wasn’t the teacher’s fault, the students or the other parents. They all included Boo. These feelings are my own and incredibly selfish. Because I looked at Boo and felt bad for her. That she didn’t enjoy herself but more than that. That I looked at Boo and saw her disability.

Not what others perceived but, as Kristi posted on Friday, how being in Public showed me how my child was not typical.

And moms are not supposed to do that. We are only supposed to see the beauty and innocence of our little ones. I failed. I cried. I realized that this is my problem and cannot blame anyone other than myself.

I know that this year will probably be different. Boo has more mobility, more words and is no longer afraid of dirt. I am sure that David will come home and tell me what fun it was, that she had a great time. So I apologize to her. Because I cannot face it. I will not chance it being a repeat of last year. I simply do not have it in me to go on another field trip of nightmares.

This is my failing, not Boo’s.

I’m so sorry Boo.

 

I gave up Diet coke. Can I give up something else?

About three months now (woo hoo three!) I gave up Diet Coke. It wasn’t pretty, my friends. But I did it. Recently I read a great post by Jen Kehl and am going to try to give up one more thing.





I do not think I yell, a lot. But I do know sarcasm is my friend. In my house I am famous for the eye roll (now mimicked by Allie) and when I do lose my temper, well it is as pretty as me off the Diet Coke.

Jen had this great post about parenting Brady-style. Now I know what you are thinking. Every once in a while I wish Marsha got a slap upside the head. I would suggest you go read her version here, but then you might not come back. She has some great posts. So here is my synopsis of her post in a nutshell:

Treat your kids with empathy, cool-headedness, use disappointment to guilt them and most importantly don’t yell. Now I am a total fan of living in Kristi’s Our Land of Empathy and Wonder. But I am not always empathetic when dealing with my own children, husband and definitely not with the puppy-turned-toddler-dog.

I may use guilt, but only that they have upset me. Not that I am disappointed in their behavior. I am definitely not cool-headed, I blame this on my goal of having the perfect family and why the hell don’t they conform to my wishes. And yelling? I don’t typically yell unless I am pushed just over the edge of reason. Then the neighbors can hear me.

Again, none of this is the picture of perfect motherhood I was promised in Lamaze class. Although there was screaming there.

Back to Jen, what struck me about her post was that she noticed her son was reacting based on her action. If I roll my eyes at her father, won’t Allie do the same behavior? Hell, yes.

Now this might not be the brightest idea during summer vacation. But I am going to try Jen’s Brady-parenting style. I will (try to) eliminate yelling, be more empathetic when Allie has an issue and speak quietly.

I figure it is better to master it before homework starts up again. I’ll let you know if life becomes calmer or if Allie decides to move in with her crafty aunt.