Category Archives: inclusion

Name change

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At the beginning of the summer we took Bridget to see a Specialist 20 hours away from our home in the hopes to find an answer to Bridgetitis. We had gone on a search for our own Dr. House. We allowed them to perform Exome sequencing, where Bridget’s DNA would be (in layman’s terms since I really am not a scientist) broken down and reviewed by computer strand by strand allows the scientist to discover where the gene may have gone awry.

We got the results. Finally. Continue reading →

I wish

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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

TBT JUMP!

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It’s Thursday so it’s a throw-back day. This post was originally published on 19-APR-2013 as part of the 5-minute series. Where you are given a word and just write, unedited, for five minutes straight.



The prompt: JUMP


Ready, set, go

Dear the Fellow that I fired, remember when you told me that Boo would never walk, talk, know us. She was six-months old. You told her father and I that she had a brain disorder which meant her brain pattern was ‘too slow’. 

I went home and cried. Then I call your boss. You know the head of Neurology. Who told me you had no right, no freaking right to tell me that my daughter might do or not do anything. She has an unknown genetic disorder NEVER SEEN before. That very rarely do you take MRI’s of 6-month old brains. Exactly what would he have compared to Boo too? 

So he told me you were off our case. We got transferred to another Fellow. An awesome doctor who believes in our daughter.

Four years later, after 9 months of therapy Boo jumped. Yes, you freaking jerk, my daughter not only laughs, signs and talks, knows her sister, her father, myself and HER FRIENDS. My daughter also walks and loves her puppy!

Boo not only loving but kissing her puppy!

And this week not only did she jump, she jumped over a line.

What you took for granted in your knowledge of all things is that you knew nothing of my daughter’s strength, joy, heart and determination. You did not know that she has a circle of people who make her more than you ever gave her credit for.

Boo jumped. And I hate that for a minute you made me think she wouldn’t.

Damn you, you made me doubt my daughter. Just once, at 6m of age. After I talked to your boss, I never did again.

Boo jumped.

END

Darn it I am out of time! I had so much more to say on this subject. Obviously I have some unresolved anger at that Fellow. But I am also thankful for the Fellow his boss assigned Boo’s care, who is now an MD. This wonderful doctor who saw the potential in Boo and never told me to give up!

The most amazing thing my body has done is….

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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.


So with the first Finish that Sentence in over a month I almost skipped. I truly could not think of one amazing thing my body has done. Let alone the most amazing thing my body has done. 

I know, you are thinking: CHILD BIRTH. But well, I didn’t do that too well. Pregnancy, sure. That was easy. Heck it wasn’t until month 7 with Abby that I even thought of maternity clothes (don’t hate me). Yet, I don’t really think that is the most amazing thing my body has done. Every mother, after all, has done it. 

So to be amazing, it has to be unique. Right? 

I was stumped. Truly stumped by this week’s prompt. What is the most amazing thing my body has done? 

Crickets.

How’s that for self-confidence? 

Then I realized it was simple, really. The most amazing thing my body has done is provide whatever Boo needs. I have held Boo down (physically) during a truly invasive, painful procedure yet she willingly runs into my arms. I have comforted Boo during moments of epic meltdowns and moments of a Hallmark-commercial sweetness.

This body is the one Boo clings to more than any other. This body, my body, is the one most likely to soothe, to make secure, to always be there when needed. At 3 in the morning or at 3 in the afternoon. 

It amazes me, with every test I have held her down through, she prefers my body over all others. 

My cheek is the one that rests against hers for a kiss.

My ear lobe is the one she rubs for sensory comfort.

My mouth the one that advocates for her. 

My shoulder is where she rests her head when tired, when sad, when happy and when content.

My lap is the most comfortable seat in any restaurant.



My hips are the one she rests her head against as I do dishes, just wanting to be close to my side. 

My legs are the ones carry her when she wants to walk but is too tired. 

My hand is the one that held as she slides down the ‘big’ slide. 

My arms are the ones that picks her up when she falls and lets her go when she flies.



The most amazing thing my body has done is something not for me, but for my beautiful Boo. 


Finish the Sentence Friday

TBT–Out of the Mouths of Babes

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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.


Weird boy, I asked, do you mean the boy with Down syndrome?

          What’s that? Abby replied.

Well he is special needs, like Boo, I explained
Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?


This conversation floored me on many levels. First, Abby has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Abby attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.


Abby has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?


Of course, I asked Abby. Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy.   I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Abby was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Abby feel if one of her classmates called Boo “weird”.


But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Abby and she can then teach her peers. But neither Abby, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.


Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Abby thought the teacher should have let the kids know. But by privacy laws, they cannot.
I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Abby until she asked/made a comment in my presence.

I think as children get older they may become more aware (and yes, mean). But at Abby’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.

Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.


So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

Bear with me…

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This is kind of a Jen Kehl type of post but I hope everyone bears with me. I listen to Pandora at work. This means music goes from Eminem to the Drop Kick Murphys to the Glee Soundtrack.  The other day right after I heard a song by Eminem the music transitioned to Christina Perry’s A Thousand Years (theme from Twilight). 

It was the instrumental version so I did not have the singer’s voice, just the one in my head. It occurred to me that the song while about true love, to me is about parenthood. 

“The day we met, Frozen I held my breath. Right from the start I knew I had found a place for my heart…”

With each girl I literally held my breath when I first held them. I was so afraid I would break them. But I knew in that instant I had found my home. One where I would always be warm and loved.

“Time stands still. Beauty in all she (he) is…I will not let anything take away what’s standing in front of me…”

Time does stand still. It also goes faster than a heartbeat. But there are moments of parenthood where you are lucky to see for the rest of your life. Their first step, their first smile (for real, not the gassy one). The day they drive the car for the first time. The moment they find their true love. No matter how many times you hear “MOOOOMMMMM” and wish they had a mute button. It will erase the moment you heard them say momma the first time. 

“And all along I believed I would find you. Time has brought your heart to me. I have loved you a thousand years. I will love you a thousand more”

Children don’t understand. I know I did not understand the depths of my parent’s love until I had my own. Time might march on. We are only “here” for a short time. But love transcends time. It transcends distance. You can have a child half-way around the world and yet your love reaches them. 

Your child might be non-verbal. They might be in the midst of an epileptic seizure. They might just be being a pain in the butt teenager. Yet they feel your love.

For a thousand years you get to feel theirs right back at you.

And that is how deep I got into A Thousand Years until Men in Hats came on. So everyone grab your child and do the Safety Dance!


Throw back Thursday–On Display

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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.


//www.youtube.com/get_player


(Originally posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot .  It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.


When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match. 

My Challenge: Missy

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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

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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.


TBT Blog Style


(Originally posted 18-JUL-2012)

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

Weird boy, I asked, do you mean the boy with Down syndrome?

            What’s that? Allie replied.

Well he is special needs, like Boo, I explained


Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?


This conversation floored me on many levels. First, Allie has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Allie attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.


Allie has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?


Of course, I asked Allie! Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy.   I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Allie was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Allie feel if one of her classmates called Boo “weird”.


But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Allie and she can then teach her peers. But neither Allie, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.


Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Allie thought the teacher should have let the kids know.


I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Allie until she asked/made a comment in my presence.


I think as children get older they may become more aware (and yes, mean). But at Allie’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.


Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.


So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

Why I’m not mad at Toni Braxton

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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.