Category Archives: compassion

31 for 21

I have been blogging for about four years now. In my first year my friend Michelle at Big Blueberry Eyes began hosting the 31 for 21 challenge. Although Boo doesn’t have Down Syndrome she has a lot of friends that do.  I have participated for the past three years and will do so again this year. 

And this year I am starting on time, so bonus points!

October is Down Syndrome Awareness Month. Boo’s favorite friend at school, Jillian, has Down Syndrome. Just like Boo, Jillian learned sign-language first. Did you know that most therapies used in treatment for a person with autism or developmental delay were first created to be used for children with Down Syndrome?

Sadly more fiction is out there about Down Syndrome than facts. Last summer a man (for lack of a better word) told a woman that it is immoral to have a child with Down Syndrome. He is wrong, so wrong. I am not promoting pro-life or pro-choice, it is your decision. However I urge, no beg you that if you are pregnant and told your baby might have Down Syndrome to find out the facts, find the support and find information before making a choice you cannot take back.

Here is what Down Syndrome is not:

  • Down Syndrome is not contagious
  • Although all children with Down Syndrome experience some cognitive delay, having Down Syndrome does not mean the child cannot learn 
  • Down Syndrome is not a rare disorder. In fact 1 in about every 700 children are born with Down Syndrome 
  • People with Down Syndrome are not always happy. Just like all children they have their moments
Here is what Down Syndrome is:
  • People with Down Syndrome have jobs and participate in the Community
  • People with Down Syndrome have the capacity to love, to learn and to affect change
  • People with Down Syndrome life expectancy has grown to be that of most peers.
  • People with Down Syndrome have friends, know love and just like their peers have tempers
  • According to NDSS, there are more than 400,000 persons with Down Syndrome living in the US. Chances are if you do not know someone today you will tomorrow.
  • Down Syndrome does not discriminate on race, age or income level
Having Down Syndrome is a life sentence, but it can be a beautiful life. 

The purpose of the 31 for 21 challenge is to post every day in October. Each post does not have to be Down Syndrome related. I did focus on that today to kick off the month. Please visit Michelle’s post to learn more about participating.

I hope my fellow bloggers join Michelle’s Challenge. Because awareness promotes acceptance.


Just what we all want for our children. To be seen just like everyone else.



 
To learn more about Down Syndrome, please visit the National Down Syndrome Society.

You are not alone

A year ago, Kelli Stapeleton failed to kill herself and her daughter. Issy recovered from her injuries and Kelli went to jail awaiting trial. Yesterday it is reported she plead guilty. Before you judge her and her situation, I ask that you read today’s Throw Back Thursday Post: Remember the Parent. Remember to offer to help before you offer to judge. Talk to that woman in the elevator. Offer support, a shoulder or empathy before offering judgement of a life you know nothing about. 

More importantly to the mom who is facing a situation like Kelli, remember you are not alone. I’m here. I’m listening. Reach out now before it is too late. There are ways to get your village of support. There are people who understand. If you are desperate, know that you are not alone. You just have to call. You might not think so, you might be in such a dark place that you think you are alone that no one understands. You are wrong, so wrong.

The Good Smaratians  1-877-870-4673 or the National Suicide Prevention  24/7 hotline for assistance: 1-877-273-TALK Or please utilize the Autism Speaks Crisis Intervention to find more avenues of support. 

Or contact me, Kerri at firebailey@gmail.com  I might not be able to help but I can listen. I can be there. I can help you find support.

Just know that you are not alone.

The post below was originally posted 23-SEP-2013

I’ve been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.

Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from JulieJill and Kristi’s blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation.  People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, after school therapies and other support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo’s therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli’s out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.


I wish

Dear Abby,
Today you started fifth grade. I’m amazed by you. You still retain the little girl I love as you grow into a preteen. You are not perfect, but neither am I. Although I wish you were not such a picky eater I know that, like me, you will one day eat a meal without me saying JUST TRY IT.
In other ways you are too perfect. It is like you were created just for me. You make me laugh. Although you refuse to make your bed, you make Boo’s for her every morning. 
I am amazed by your kindness, your patience and your Abby-ness. 
You astounded me at Welcome Back Night at your school. When Boo was upset because you were going off with your friends, you came back. You took your sister by her hand and introduced her to everyone you saw. You navigated stairs (and I am sure stares) with your sister. You took her to the bathroom and assisted her. I do not know any other child your age that would help their sibling in the bathroom. Or include her with your friends. Help her drink out of a water bottle or hold a piece of pizza that she wants to eat but refuses to touch.
You made my heart swell ten sizes too big when I overheard you say, this is just what big sister’s do.

What amazes me is that I never have to ask. EVER. You just do what you do. I do not know what Boo did to get such a fantastic big sister. But I am very thankful.
As you grow you continue to amaze me. I love that you still want to hold my hand. That you still need me. Too soon I know the day will come when I will embarrass you with more than just my killer dance moves. I worry about that day. The day when you are no longer mine.
I want you to know how special and unique you are. How proud I am of you. When I see you interact with adults and your peers. You have kindness within your soul and you never hide it.
Thank you for all that you are. As you enter fifth (gasp!) grade I have five wishes for you:
1.   That you surround yourself with friends like you. Friends that are kind, forgiving and have empathy.
2.   That you do not fall into the tween trap of boys, music and makeup before you are ready.
3.   That you remember it is okay to march to your own beat.
4.   That you keep one foot in the magic and one foot in the discovery.
5.   That you hold my hand just a little longer.

Love,
Mom

My Challenge: Echo

Today’s My Challenge is from Echo a mom blogger who writes about the joys and tears of home schooling two children, one with autism and one with a diva issue. 

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My biggest challenge and my greatest love…
When Kerri asked me if I would be willing to participate in this series, I was ecstatic. I think that opening up and sharing our struggles and challenges is a great way to help each other grow as parents.
My son. My handsome, smart, charming and stubborn son is on the Autism Spectrum. He has PDD-NOS (formerly diagnosed as Asperger’s Syndrome). He is extremely high functioning, but also has a lot of sensory processing and social interaction issues.
My daughter. My gorgeous, intelligent, dramatic and independent daughter is NT (Neuro-Typical). She has hit all of her milestones and continues to grow and progress.
My biggest challenge is also my greatest love, raising my two children. Raising a child on the spectrum is hard for anyone, add in sibling rivalry and it can be complete chaos. I have to navigate so many issues, that at times, I feel like I am nothing but a referee.
Try dealing with the emotions of an over dramatic 8 year old when he realizes that his 3 year old sister is faster than him. Try dealing with his frustration when his 3 year old sister starts riding her bike and he cannot.
Imagine trying to get your strong-willed 3 year old to stop touching her brother a certain way. Imagine trying to break up a fight between a 3 year old and an 8 year old because the 3 year old took her MegaBlocks back.
Feel the heartache when you watch one child achieve something that the other could not. Feel the confusion because you don’t want to treat them differently, but you have to because of age. Feel the frustration when your 8 year old constantly yells at your 3 year old and your 3 year old constantly pushes your 8 year old’s buttons.
My children are my greatest love and I would not change either of them. However, trying to raise them together, equally is truly my greatest challenge.


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When Echo sent me her post she wondered if it was “right” for the series. After reading it I replied it was freaking awesome. I think all of us with multiple children have the challenge of raising them the same but different. Add in a disability and YIKES it can sometimes (most times) seem overwhelming. 

Thank you, Echo for sharing your challenge today. You can read more about Echo at Mad Mommy where she shares everything from the 100 lb challenge to home schooling. 


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


My Challenge: K

Today’s Challenge is from my friend “K” who prefers to remain anonymous. She is a young woman who one day soon will change the world with her writing, her heart, her well just awesomeness. K was a contributor to the Challenge program at Abby’s school. Allowing us to use her essay, The Little Dancer, that had such an impact on the Junior High students. 

“K” has Cerebral Palsy. She is one of the reasons the What’s Your Challenge? program at Abby’s school was so important to me. I wanted people to stop looking just at a disability and see the person first. I thought for sure I knew what her challenge would be. Of course, per usual, she surprised the heck out of me. 




I sat in the corner of the shoe store and broke.

            “I can’t do this anymore.”
            I was surrounded by boxes and boxes of shoes, shoes that weren’t made for people like me.
            Somewhere in the background, the sales associate was staring at me, and there was an odd expression on her face. Pity? Revulsion? Embarrassment? Or maybe she was just grateful that she wasn’t my mom, who stood over me with an armful of rejected shoes.
            It was 5:00 p.m., the evening before I was to give my senior project presentation, a presentation that determined whether or not we would graduate from high school. The rubric for the presentation included a phrase that made my heart sink: “Must wear formal footwear.”
            To make matters worse, as I was leaving, my teacher called over his shoulder: “Remember, no boat shoes and no sandals! The guys should wear dress shoes and the ladies should wear something like a nice pair of heels.”
            Many girls my age owned a closetful of shoes that fit that description, but I only had two pairs of formal shoes that I could wear safely: a pair of boat shoes and a pair of sandals.
            “I can call the school in the morning,” my mom offered, “and ask them not to penalize you for your shoes.”
            “I don’t want them to make an exception for me,” I said, my tone desperate.
            So my mom took me to the mall for a last-minute shoe-shopping trip, my own personal version of hell. Each store was the same…the sales associates approached us with their fake, overly-cheerful smiles, all too eager to help, and returned with a pair of shoes for me to try on. Then they’d hover over me, watching closely as I tried to cram shoes on my feet, and their chipper smiles would fade into blank stares as they watched me walk.
            I had told myself that I would be strong, and I managed to keep it together for four stores in a row. And then, at the fifth store, the associate brought out a pair of heels.
            “She . . . those won’t work for her,” my mom said.
            Tears sprang to my eyes, and I turned away to hide my face.
            “It’s not fair,” I whispered. “I just want to wear pretty shoes like everyone else, and I’m tired of people staring at me like I’m some kind of freak.”
            My mom set down the shoeboxes and looked me in the eye.

            “Listen to me,” she said, just loud enough for me to hear. “This is your challenge. I know it’s hard, but I’ve seen you overcome so much in your life and I know you can overcome this. Shoes don’t matter. You could wear a pair of sneakers with your dress and you’d still be beautiful.”
            With that, she took my hand and turned to the still-gawking sales associate:
            “I think we’re all set, thanks.”
~
            The next day, I slipped on my boat shoes and presented my project to the panel of judges: a teacher and three members of the community.
            As I presented my project—I had joined an acts-of-kindness group whose mission was to help others with theirchallenges—I spoke of Tanner, a boy with cerebral palsy who was homebound after surgery. His mother didn’t have the financial means to purchase Christmas presents for him and his sisters, so our group banded together to buy them gifts. I bought Tanner’s present—a basket brimming with DVDs and popcorn, because he was a movie buff—and signed an anonymous note explaining that I had CP as well and I understood what he was going through.
            When I finished, one of the judges looked at me with tears streaming down her face.
            “Thank you,” she said, her voice breaking. “For Tanner. My daughter has CP too.”
Just then, I knew that what my mom had said was true. Shoes don’t matter. Shoes don’t define us.

People do.

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Alright, who wants to take K shoe shopping with me? As in shop til she cannot shop anymore. And if we cannot find shoes that are beautiful and comfortable we knock on Manalo Blahnik's door and demand he design something immediately. Or some other famous shoe designer's door. I'm sure we can find at least one.


"K" is one of those gorgeous people. Inside and out. She is the reason I wrote the letter for Boo. I am happy to call her friend and hope that my daughter Abby grows up with "K"s character. You can read more of "K"'s writing at her blog, Transcending CP: Shattering the Limits of a Disability



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