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!

My Challenge: Mardra

I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 

Sometimes

**Warning Rant Ahead**

Some times....I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

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 Julie, Jill 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.

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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TBT--Out of the Mouths of Babes

Welcome to Throw Back Thursday, blog style. 

(Originally posted 18-JUL-2012)

Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn't know. Abby said that there was only one other girl, a bunch of boys and one weird boy.

A letter to myself

I'm semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual stick-to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2's prompt

My Challenge: Eric

I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc...but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force. 

Being okay doesn't mean being satisfied

A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, "T" wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder "T" gave me the  name of a doctor who might be willing to review Boo's history. She may have found our Dr. House.

So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.

Thank you

While I have so much to be thankful for this week, I am only going to focus on one person who made a difference in Boo's life.

It hasn't happened yet

Yesterday was preschool graduation. For the third year in a row I did not attend. As I was leaving another mom said, oh are you too upset to stay? 

Why I'm not mad at Toni Braxton

Toni Braxton is facing a lot of criticism over her memoir, Unbreak My Heart. According to E-online, Ms. Braxton writes that she believed her son's autism was "God's payback" for having an abortion.  While many are understandably upset about Ms. Braxton's provoking statement, I think what is being missed in the outcry is she states in her book she BELIEVED. With a "D". 

What parent of a child with special needs has not had that thought? That our child's disability was because something we did? That you might be being punished for something? That you did something wrong? Did you have a cocktail before you knew you were pregnant? Did you scuba dive? Were you a bad person? You and your spouse fought. You cried when you found out you were pregnant.

When Boo was first in the NICU I wracked my brain trying to come up with some reason why. Every time some new worry arises with her I wonder why she suffers. I still am searching to the ends of Google to find an answer. I have blamed myself for not wanting a second child. I blamed myself for knowing that I probably had a glass (or two) of wine before I knew I pregnant. I blamed David, thinking surely something he must have come into contact with at work did this. This thing that no one could explain to us.

If not one parent has ever had that thought, I call bullshit. Yup, I just swore at you. Because it is impossible for me to believe that when told your child had XQZ you handed out cigars and said how proud you were that your child may have to struggle more than others. That not once did you second guess yourself, your doctor, your medical history or your God.  It is easy to blame God for a lot of things. He very rarely comes to the witness stand. He is kind of busy.

Photo Credit: Finding Ninee

He is blamed for war, for famine, why not question him for your child's disability or illness? Or your own. I imagine there are many cancer warriors who wonder why they got sick. What did they do or not do?

In Ms. Braxton's memoir she is recounting her feelings. What she went through as a parent of a newly diagnosed child. I do not agree with everything she states in her book. But am I outraged that she once thought God was punishing her for a decision she made? That she went there and bared her feelings? We might write in our diary, our blog, our book about our feelings and fears. We cry to our friends, our partners and our moms. We go through a period of grief of the child that might have been. That is natural. Am I sometimes fearful that one day Abby or Bridget might read a post I have written and be hurt by it? Of course! But I am also aware that my love for them will overshadow any fears or thoughts I have had, they will read the whole post/entry and not take a line or two out of context.

Did Toni Braxton set autism awareness back a decade with her memoir? Nope. Not buying it. Only if the crazies out there start using it as an anti-abortion statement. I can see it now, don't have an abortion your next child will be punished. Let's face it, there are idiots out there who use whatever sound bite possible to defend their position. Even if there is a thousand reams of information to back up the opposite position. Of course I wish she spent more time talking about how wonderful her son is, how proud she is, how she realizes that autism (or any disability) isn't a punishment. That life with a child with special needs is a life-altering journey. 

But it's not my memoir. 

Most parents would never, ever, tell her child that she wondered why her child was born with a disability. We tell them that they were born perfect. There is nothing "wrong" with them. We lobby for inclusion. We shout from the rooftops our advocacy. 

We believe deep in our hearts that our child is perfect, beautiful, amazing and we are astounded by their will.

But at one moment in time, each and every one of us wondered why "it" happened. Then our hearts grew ten times too large and we stopped wondering and began living. 

At least I'm honest enough to admit it.



Special thanks and a shout out to my friend Kristi at Finding Ninee who drew God on the Witness Stand with three hours notice, never asking why I needed it! And to Tia who pre-read this post and encouraged me to post it knowing others may disagree.

The joy of language

Boo gives me a lot of atypical milestones, moments, frustrations and joys. Every once in a while, though Boo gives me that typical parent moment when I realize even special children are typical in ways never imagined.

Mom in the elevator

Dear Mom in the Elevator,

I'm sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children's. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

No interest

I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.

Therapy with love

Every month we have "workshops" at Boo's school. It is a time when we get to be at her school for an afternoon and observe her various programs. All of her therapists are there, along with the head of her program. We find it a very rewarding, if sometimes heartbreaking, experience.

It is an opportunity for us to ask questions. To provide input on what is happening at home and seek advice. We are able to see the techniques corrected by the head of the program and adapted in ways to promote Boo's best chance for success.

The Challenge Wall

A few weeks ago I wrote about a new program at Abby's school that celebrated Special Needs Awareness Month. I had to take down the children's challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.

Decisions not made

The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.

This is one face...

Today is Autism Awareness Day. While I may not (yet) be comfortable with Boo having an added diagnosis of Autism, I am getting there. There is no escaping the fact that Boo was tested and she has been diagnosed with Autism Spectrum Disorder. But what does this a child with autism look like?

3.5 I took the pledge. Will you?

Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG's and an MRI of her brain. They told us she had a "slow" brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don't use the word retarded any more. They use intellectually delayed.

I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.