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. 

TBT--Dear Ann

It's Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.

The most amazing thing my body has done is....

When you think about your body, I bet you see the flaws. Okay I see the flaws (of my body, not yours). I avoid the mirror after a shower better than a deer avoids hunting season. I would rather talk or write about anything other than my body.

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.

Challenges related to a disability

Last week I was late and well, I'm still technically a week behind the postings. This week's prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability. 

I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?

The truth is, though, loving a child with a disability doesn't mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn't see her climb on the counter and remove all knives from the strainer to get her Sophia cup). 

As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation. 

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.

Throw back Thursday--On Display

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.

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? 

My Challenge: Missy

It is my pleasure to introduce my friend Missy. Missy is a true warrior mom. She coaches, brings her daughter to cheer leading, gymnastics and any event featuring Sofia the First. In addition to keeping her princess happy, Missy has two sons that keep her on her toes with (pick any sport) practice.

Missy's challenge? Anxiety

Truthfully her challenge should be that she is a Peyton Manning fan, but we are friends anyway. Missy doesn't let anxiety stop her from being awesome at her job, working with children like Boo every day. She channels her anxiety into showing her charges that just because they have more challenges than most, with hard work and dedication they can defy expectations.


Anxiety is tough. It is a silent challenge. One that many are afraid to share for fear of misjudgment. Yet an estimated 40 MILLION Americans are challenged with a form of anxiety. Sadly, only one-third is estimated to seek assistance. Thank you, Missy for sharing your Challenge. I am especially thankful for the care you show Boo every day. For more information and resources on anxiety please visit the Anxiety and Depression Association of America.



What's your challenge is a series that was inspired by a program I created at Abby's school. To submit your challenge, please e-mail me at firebailey@gmail.com

Throw back Thursday--Inclusion

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.

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.

My Challenge: Julia

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.

I Run 4

I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.

What happens...

What happens when you begin to lose faith? In perspective we haven't been on this journey long. Five years is nothing when compared to other children's battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.

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?