Author Archives: firebailey

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About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

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? 

Truthfully, no. Cause it’s year three and she will be going back today. She will take a one week break and be back the first of July. Boo does not get summer vacation (thank goodness) and she will not be moving on to Kindergarten in the fall. It is not meant to sound harsh or like I am upset. I am not sad at all that she is not graduating with her peers. I am overjoyed. Heck I am thankful that we are not facing Kindergarten next year.

I’m doing the happy dance.


You see, Boo has the best and I mean best ever pre-K teacher. One that loves and cares for Boo in a way that makes my heart ten sizes to large. Miss Trisha is the reason Boo was enrolled into the special education program. She is the reason Boo has made such significant gains. Miss Trisha is the reason Boo was included in the best ever ABA program headed by a team of professionals that but the child before anything else.

I am consistently amazed at Boo’s willpower and progress. Three years ago when she entered the pre-K classroom she had (maybe) 10 words and 20 signs. Now she shouts MISS TISHA OME ERE.  When Boo was screened for the pre-K program she was using a pediatric walker. 


Today she jumped around in a circle with her friends. Yes, she danced while they walked around in formation. But she was present. She was in the moment. She was having fun. This is the year Boo made friends. For real. Friends that invite her to birthday parties. 
Friends that do not let her sit on the sidelines and just observe. Friends that taught her how to play tag.  Friends that on a field trip at the Zoo make sure she keeps up. 




Not only did she help Boo up she celebrated afterwards











This marks the first field trip I attended with Boo that I did not cry afterwards. Afterwards her teacher asked if I was okay. Because to Miss Trisha all of us are her responsibility. 

This year Boo made friends. As in more than one. Ones that will keep in touch and be a part of her life for a long time to come. Girls and boys who play with her not along side of her. Children who run to hug her in the morning and interpret her language when there is a new child or substitute therapist. 

But for the first time the pre-K non-graduation makes me wonder not worry about what September will bring. How many more milestones and leaps she will make developmentally under the love of Miss Trisha? It is breathtaking to imagine.

No I did not attend Boo’s pre-K graduation. Because it hasn’t happened yet. I will be there in the front row when it does. But I plan on that not happening until Miss Trisha retires. 

Somewhere around Boo’s 18th birthday.






Throw back Thursday–Summer

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.



Throw Back Thursday, Blog Style
(Originally posted 20-JUL-2012)
I love that line in “It’s a Wonderful Life” when the old man says to George and Mary, “Aw, youth is wasted on the wrong people”.

I think the same can be said about summer vacation. Abby is ‘BORED’ and you know it is bad when she is not only bored, but bored in capital letters! And for the life of me I cannot think of why! She has played in the pool—granted the kiddie pool because we cannot trust Boo or crazy puppy with the “big” 4ft pool, gone to the playground with Daddy while Boo is in school, gone to the marina and the fish hatchery, played with her Barbie(s) and the list goes on. And let’s not forget the week she was a freeloader at our friend’s beach house—while I was at work!

I offered to give her a list of things to do. But she wasn’t too impressed with my ideas:
  • Clean her room
  • Laundry
  • Sweep up the dust-bunnies created by crazy puppy
  • Clean Boo’s room
  • Cook dinner
  • Wash the windows
  • Clean my room (hey, why not?)
  • Clean the bathroom (okay, NO ONE wants to do that!)

 

If I had summer vacation, I would be ecstatic to be BORED. I would read, yes read, a book that had no meaning at all. I would go for walks on the beach. I would…I don’t know what I would do because it has been about 25 years since my last summer vacation!

But I bet there would be a nice glass of pinot grigio

Actions matter

It happens, a lot. A child will see a person/child different from them and in the loudest outdoor voice possible they will ask:

“Why is that person black”

“Why are those two girls kissing” 

“Where are his legs”

“What is that thing in that boy’s throat”

As parents we think we are doing the right thing by saying “don’t look” or distracting the child. But it’s wrong. When you redirect the child, when you do not answer their questions instead of teaching empathy you are teaching them that there is something wrong with the other person.

You are teaching them that person is not to be looked at, to be approached and most hurtful to be friends with.


A child will befriend anyone. Heck, Abby will befriend a squirrel if they make eye contact. Before Boo I might have been that parent who tried to redirect her attention. My actions could be justified, I might have been hoping to spare the other mother embarrassment.

But why should she be embarrassed by her child? 

Is she not supposed to leave home with her child who happens to be in a wheelchair? Is her child to be locked away like he is something to be ashamed? Should the father of a child who is deaf not use ASL because another person might stare? 

I thought we moved so far from the time when children were put in sanitariums. Instead parents are made to feel they should not go grocery shopping or to dinner with their child not to spare themselves but to spare others. We begin making our home their institution.

I hope you remember my friend Julia from the What’s Your Challenge Series. This past weekend her mom took her grocery shopping. Julia loves being out in the car. She and her mom endured stares while shopping. As Lisa said, “you get used to it”. It was such a beautiful day they decided to stop at Starbucks. A young girl approached Julia, Julia lit up. Her mom, Lisa said hello to the little girl. Then sadly the girl’s caregiver rushed over. Took the girl by the arm and told her to “not to look” at Julia.

Like Julia is a freak and should not be looked upon. That is how I am sure her mom felt. I know it is how I would have felt. Instead of enjoying her coffee in the beautiful day, she took her daughter to the car and cried the whole way home.

In the interest of fairness I want to give the caregiver the benefit of the doubt. Even professionals that work with people who have special needs wonder if they can do it, can they take on this care. I am sure this woman thought she was sparing Lisa and Julia hurt by any questions the younger girl might ask. She might not understand that Julia understood a potential friend was whisked away. That her mom was made to feel unworthy. That her sister, had she been there, would have asked why the caregiver was so rude.

There is the rub. So many of the uninitiated don’t know what to do. Do you let your child approach and ask questions?

Here is the answer: YES! A resounding YES!

Because here is what makes children awesome: the question they ask might not be the one you would. But they open the door for you to approach the parent. We are approached all the time with Boo. Abby tends to take the questions from the kids. I am consistently amazed at how few questions are asked before acceptance is born. (My favorite answer of Abby’s: Her brain just works differently than yours).

Kids just want to ask the questions. It’s the parents who want the details. That is okay too. 

Ask away. Do it with respect but ask. If you are not comfortable asking, how about just saying hello? You will be teaching your child an important lesson. That we are not all the same but it is our differences that make our community. You can teach your child what empathy and acceptance means without ever having to say a word. Or you can teach them the opposite, it’s your choice.

Your actions will show that Julia is not a freak. She is not something to be locked in her parent’s home. Julia is the miracle of her parents.  She is the younger sister of K who adores her. She is her daddy’s princess, her mom’s warrior. She adores her two German Shepherds. She loves swimming, horseback riding and driving in the car. Julia has inspired a runner in the I RUN 4 organization. She is the reason why her runner gets up and runs every morning. 


You should get to know her and others like her if given the chance.  It just might inspire you to teach your child acceptance rather than avoidance. You just must learn something more about yourself.

My Challenge: Kerri

Today’s challenge is brought to you by the letter Y. Okay not really. This is my challenge.




I suffer from something that is not medical. It is not really treatable. But it is real. I battle self-worth just about every day. This is not a poor me, everyone pat me on the back type of post. Rather it is my challenge: Wondering if I am good enough:

Am I a good enough wife? (Depends on the day)

Am I a good enough mom?

My hair, why just once can I not look put together?

I talk too fast, too often and without a filter. (Why, oh, why did I ask my friend who is a lesbian who gave birth to their child?)

I forget to breathe and enjoy the moment.

I want a cleaner house. One that is put together, that looks like something out of House Beautiful. Well not stuffy. But beach life.


I want to run faster, be healthier, be better. (It is not longer about coming in before last place).

Why do I have to look like the kid from MASK in pictures?


Is my writing good enough? Am I making a difference?

I wish I was a good of a friend to others as they are to me.

I wish I wore make up. Okay not really, who the hell has time for that? But I have an event next weekend and just know I am going to feel like an ugly duckling in Marcie’s beautiful dress she is loaning me.

I wonder why … insert self-effacing /self-defeating comment here.

For example, my challenge picture? I agonized over it. Seriously. Here I am asking people to send me their challenges and I cannot figure out how to take a good selfie. So I doctored one. Cause I’m an idiot (that is the dialogue in my head).

What is crazy is that I know I am not alone in this challenge. I know so many other people must have to overcome it. Otherwise we wouldn’t leave the bathroom in the morning. About three years ago I made a conscious decision to get out of my own way. To become more vocal, less of a wall flower.

I am getting better. I blog. I joined the PTA. I host ladies night. I will walk into a room where I know not a soul and strike up a conversation. If I see someone sitting alone I will try to bring them into a group. I will put myself out there in the hope to gain just a little more self-worth.

I try not to create this self dialogue in Abby. That is where my journey started. When Abby  began saying she wasn’t good enough. I realized I was modeling language and behavior. 

And that is why my challenge will not stop me. Impact me, for sure. But stop? Nope my challenge will not define me.

I hope.

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

Thank you…

”TenThere is a lot to be thankful for, if you don’t obsess about the pain in the assness that is life. This weekend is Father’s Day. As the oldest child woke us up at 2 am this morning I turned to my husband and said, well you wouldn’t be able to celebrate Father’s Day without her.


Here are 10 other things to be thankful for this Father’s day:

10. That my brother is gullible enough to believe that Father’s day is meant to be spent showering his wife with attention since she gave him the greatest gift ever.

9. That Boo drove in the Jeep without throwing her shoes out of it.

8. That Abby has exactly six and ONE HALF DAY left of fourth grade math

7. That we took Jampa Joe’s breath away by sending him flowers, to his office on Friday for Jampa’s Day.

6. That David’s wish for Father’s Day was to take a walk and end up in an Irish Pub.

5. That living in a small town means during a town birthday party Abby will shout out hey that’s not Mrs. B walking with Mr. B other townsfolk will chuckle and say, no that’s his mother. This is also how small-town rumors get started.

4. That when my world got rocked, again, I had friends there to hold me up. 

3. That we raised $3,000 for Boston Children’s Hospital this hospital that saved my Boo’s life.

2. That Abby has an aunt and uncle who took her to see Maleficent so I didn’t have to go.

1. That I have this man, the father of my daughters who drives me nuts but makes me laugh all at once.


Dear Dad

Dear Dad,

It’s funny. I do not call you dad. I call you Joe. It feels right, to both of us. You met my mom well after I was grown. You gave a woman who is so deserving a new start on life. A better life, for both of you. My mom deserved happiness and security. I am so thankful you were there to provide it. You scared the crap out of her (and us) when you had a heart attack. Made her (and us) smile again when you were able to ride the carousel. 



You did not walk me down the aisle when I married. That wasn’t our relationship at the time. But you stood proudly as I made this so important step. When David and built our house, when I went back to college, when we visit one another our relationship evolves into more than friendship. More than respect. A relationship based on trust and love. More father/daughter than step dad/ step monster. That you got to avoid my teenage years is my gift to you this Father’s Day.

Although it wasn’t until Abby was born that our relationship truly began.

I will never forget the day I brought Abby home from the hospital. You took her into your arms and the connection was forged. From that moment on you were no longer standing by in our lives but living the important moments with us. You stopped asking mom if it was okay to go into my refrigerator. You realized you were no longer company but family.

That is when you transitioned from my mom’s husband to my dad. You became Abby’s number one when you both accepted one another as is. She deals with your falling asleep in movies. You deal with her needing your endless attention. You suffer through her planning a Princess Birthday party for you. She suffers you trying to teach her Latin and math concepts. Plus you ate the cake she made so bonus points.



You are not Grandpa but Jampa. Even though she can actually pronounce Grandpa she is quick to correct anyone who dares call you Grandpa. While she might not understand why you are a Joe and not a dad to me, she understands unwavering love. In fact she taught us that lesson early on.

Abby and her #1 Jampa Joe

When Boo was born Abby hoped she would get your eyes. Not understanding that, well you being Asian and us being of Irish descent made that kind of impossible. 

You show the same patience with Boo. Involving her in your endless games of Memory with Abby. Even though she cheats (Boo, that is *wink **wink).


Boo might not have ended up with your eyes, but we all win with you as our number one. 
Recently at school she showed off a picture of you. She didn’t understand why people were surprised that you were her grandfather. Abby retorted to the teacher: Of course he is, don’t you see how we look alike?

As you are a man who exudes and respects traditions we appreciate your sacrifice to our chaotic, crazy and no way traditional family.

Happy Day from Boo. Happy Jampa Day from Abby who will never see you as anything other than her Jampa. And last but not least, Happy Father’s day from a woman who considers herself lucky to have her Joe.

Love,
Kerri



Finish the Sentence Friday

Throw Back Thursday–Friendships

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.



Throw Back Thursday, blog style


(Originally posted 26-JUL-2012)

Today I am amazed. Simply amazed. I brought Boo to school and she went right up to  a little girl, called her by her name (Boo’s version anyway) and they hugged. 

It was an awesome sight. Boo interracting with another child. Even more awesome, this little girl hugged Boo right back.

Then Boo called one of the teacher’s by name (again, her version but definitely the person’s name) as she passed by. (to be honest, I don’t even know the woman’s name!). She then saw another teacher and clearly said her name (this one I knew!).

The utter joy in Boo’s voice and expression was worth all the worry about this new school program.

There was month’s of anxiety leading up to the new school program. Originally the public school put Boo into an integrated preschool feeling that is all she needed. No one listened to us about her needs, etc… They would not give her an aide and did not start her therapies as directed. Thankfully the teacher in the program is simply awesome and took care of the aide herself and helped us advocate for the services Boo deserved.

In the Spring the teacher recommended a new program, a half-day in the preschool and a half-day with discrete (1:1) program that is dedicated to children with special needs. Those with CP, Downs, autism, undiagnosed like Boo. Okay, she is the only one “undiagnosed” but still the program seemed ideal.

Except I was beyond worried. I was afraid she would regress, that we wouldn’t have the communication we had when Boo was in Montessori.  You name it, I worried about it.

The first week was tough. It didn’t help that they forgot to feed her the first day.

The second week was less scary. It didn’t help that they lost her for a little bit.

The third week was without mishap so our fears were slightly less.

The fourth week, Boo met a friend and knew a teacher’s name.

The fourth week ROCKS!

Thank you

Thank you to everyone who donated to our Bridget’s Brigade in the Walk for Boston Children’s Hospital. Our team raised almost $3,000 for the hospital that saved Bridget’s life just five short years ago.

We know, in our souls, that she would not have survived without their care. 

Thank you, to everyone who walked. To everyone who donated. To everyone who cares so much for our little girl.


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.


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.