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.

Knowledge is just as important as inclusion

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Boo is in an integrated preschool. A school where for every child that has a disability there is one typical child. The disabilities range from autism to ADHD to Down Syndrome to Cerebral Palsy to Boo. At a quick glance at the class you might not be able to tell which child is typical and which child is brilliant.

Which is the whole point of the program.

Okay maybe it isn’t the whole point. However the point could be made that by exposing our children to typical will allow them to grow social skills that come naturally to their peers. The peers learn empathy, patience and that not everyone is the same.

All good, right?

Except the other day when it wasn’t. 

My friend was walking into school with her child. Behind her another mother was walking in with their own. She heard from behind her, “who’s that”? 

The child replied, That is X. He doesn’t talk.

Instead of letting it go or saying something….ANYTHING positive the mother was heard shushing her and saying “that’s not nice”.

Here is the thing. What the girl said wasn’t wrong. It wasn’t mean. It wasn’t “not nice”. It was true. Kind of. X can talk. But he has autism so you have to be looking at him and engage him for him to talk back to you.

X’s mom left feeling like her son was weird. Like he is misunderstood. This one place in the universe (outside his home) was supposed to be the safe place for us. A place where our child is accepted for who they are.

I adore Boo’s program. I love each and every one of her teachers and therapists. But I worry they might be missing an important component. I understand privacy laws and all that crap. However the typical children should be made aware (in words they understand) why X doesn’t talk to them. Why Boo doesn’t play appropriately with them. Why oh why in words a young child understand all children are not the same.

That all children, typical and brilliant are all special in their own way.

I am sure they do teach it. But the other day the lesson was lost and a mom went home feeling her son was weird. I think there needs to be more done. More parent teaching. Yes, I know we cannot get parents to come to a PTA meeting who can we get them to an inclusion training? 

There is an answer somewhere. It starts with the letting the children teach the parents. It doesn’t stop at an integrated preschool but an integrated school environment. One where every day there is a brief moment of education of those with challenges.  Awareness helps but until you ask you do not know, so you guess. It’s perfectly normal. Being aware is knowing autism exists. Being knowledgeable is knowing what autism is. We need to let inclusion bring more than awareness but knowledge.

If we can not let a 5 year-old ask the question, how can the 18 year-old know? 

My Challenge: Stacey

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You know when you graduate high school you know, just know, that you will never forget those who shared those torturous four years with? Then you grow up and move on. One of the wonders of Facebook is reconnecting with friends long forgotten. Lucky for me an old friend, Stacey and I found one another recently.   

I am so thankful she is willing to share her challenge today.

MY CHALLENGE: Choosing to truly love all that isn’t perfect

Remembering back to where it all started, trying to have the perfect life. I was on the fast track. Improving my career, I had just accepted another promotion. Things were going as PLANNED. I became pregnant and life was awesome. Then IT happened. I started having horrible pain and realized I had miscarried. Well that was just the beginning…the truth is I ruptured an organ and had 4 cups of blood in my abdomen. I had gone into shock and was practically dead. I picked myself up after hitting my head on the toilet and my husband called 911.
The purpose of this story will become apparent soon and it’s connection to autism.
On the road to recovery I decided nothing would stop me from having that perfect life. Despite the fact numerous doctors said I wasn’t able to have kids I tried again several times. And I failed several times. But WAIT a minute. I wasn’t failing at all. I never gave up HOPE. If it wasn’t for hope I wouldn’t have three amazingly complicated mischievous beings.
I got pregnant with my first child and it was rough. The doctor said try again soon if you two. Not 15 months went by and Matthew was born. I was so excited but during my pregnancy everyone asked if things were okay. I only gained 15lbs and didn’t enjoy food. Being my stubborn self I only paid attention to what I thought was important.
When Matthew was four months old I got my first sign something wasn’t perfect. My son’s left arm wasn’t functioning correctly. To my dismay, he needed physical therapy. Then he was diagnosed with autism. So we worked more and more to pay for therapy he really needed. I think we spent over $20k of our own money. But, I smiled through the exhaustion. I read books, studied online, pulled up maps of the brain (that’s the Psychology major in me).  I talked to my customers who were doctors, teachers, mothers, therapists, anyone who could offer advice. My HOPE was reaching new levels.
I refused to believe the prognosis that Matthew will never speak more than 20 years. I am not going to accept that and neither will God. For He made me super determined. I began researching vitamins, clay baths, speech therapy and anything that might help my son. We went gluten free, dairy free and I found solace with my spiritual life coach, Sister Ita.
To this day I say whatever your challenge, find your inner peace! Find your strength and pray. Find your child and don’t let them go. Don’t ever forget the journey, but focus on the end result, the future. Your child is so much more than our hearts can imagine. Hang in there through the hard times. Reach for the sky and don’t give up your hope.
Love,
Stacey

Mom of Matthew

Thank you, Stacey for sharing. I think all of us struggle loving what isn’t perfect in our lives. But a mother’s love always trumps all. In addition to being a warrior mom, Stacey is the owner of Vivian’s Day Spa in Florida. A place to rejuvenate and find an hour of peace.

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

She’s smarter than her father

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The other night I had a PTA meeting (yes, I still haven’t quite escaped). I pulled into the driveway at 9:15 pm. As I walked up the house steps I noticed David was asleep on the love seat. 

Abby was awake laying on the couch.

Me: Um…dear? Your bedtime is 8pm. 
Abby: Well Daddy didn’t put me to bed.

Me: What were you watching?
Abby: Buying Hawaii, it’s actually pretty interesting.

Me: …….
Abby: I knew if I changed the station Daddy would wake up

I wasn’t quite sure if I should punish her (or her father) for staying up past her bedtime or admire that she was smart enough how to accomplish it.

9/11

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When 9/11 happened I remember turning to someone and saying in 10 years I do not want anyone to forget this moment when we were brought to our knees and then stood tall together.

Man, woman and child. 

Christian, Atheist, Jew and Muslim. 


Straight, Gay, Bi and Trans

Today I ask that you to remember that day when we all stood together and said we are One.

Remember where you were that day when the Towers fell. When the Field burned and the Pentagon was destroyed.

Remember those who gave their lives on that September morning.

Remember the families left behind that day.

Remember those who continue to stand for what matters. 

Remember those who fought for our freedoms.

Remember those who run into burning buildings while others run out.

Remember those who keep us safe in our neighborhoods.

Remember those who keep us safe in our world.

Remember that day when the world stopped turning and we realized what matters most.





Getting dirty and finding myself

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This weekend I ran in the Mudderella Boston Event. There were a couple of hiccups. The run was supposed to be in Mass and ended up in Maine. This meant I had a 4 hour drive to run in the mud.  A lot of people were upset and decided not to go.

They made a mistake. They missed out on something I have never experienced in a race before. I’ve done quite a few of the obstacle races and more than a few 5k races. Mudderella wasn’t a race though…it is an experience.

If you let it, it can be life changing. Continue reading →

My Challenge: Sylvia

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I am so happy to introduce you to my friend, Sylvia. I met Sylvia through the World of the Blog a few years ago. She is the mother of nine, that is NINE, beautiful children. All of whom were home schooled and home birthed.  I am in awe of her patience and so touched that she is sharing her challenge with us today. 

What’s My Challenge?  My Changing  Faith
I didn’t grow up in a Christian home,  but for a brief time when I was about five years old my mother did take me to Sunday School.  There I asked Jesus into my heart!   In fact, I asked Him in twice just to make sure He was really there!  And that was the extent of my religious upbringing!

As I grew older during the early seventies I spent my teenage years dabbling in sex, drugs, and rock and roll.  When I found out I was pregnant with my first son I cleaned up my act and straightened myself out because I didn’t want to harm my precious little baby and I was determined be the best mother that I could be.

Then I got married and had another son.   When my sons were two and four my first husband died and I began thinking about my long forgotten faith.  At first I just began dropping the boys off at a local church for Sunday School and Vacation Bible School.  It was during one night as I was retrieving the boys from VBS and heard all the children singing, Jesus is my King, that I felt the Lord’s presence and renewed my faith in Him.
Flash forward thirty years and I find myself in somewhat of another spiritual awakening.  For years I had been content to sit in a pew and believe what was taught from the pulpit having complete trust that what I was being told was the gospel truth.  I never really occurred to me to challenge what I was told or even t to study for myself whether or not what I was  believing was really the truth.

Until now, that is!  The internet has exposed me to so many new and different thoughts and interpretations on the meanings of scripture. I am no longer content to just sit quietly and unquestioningly believe what I have been told.  I have come to the startling conclusion that I am just as capable as anyone else of studying the scriptures.  In fact, there are even verses that confirm the crazy notion of searching  and studying the scriptures to make sure that what we are being taught is the truth!

(Acts 17:11) Now the Berean Jews were of more noble character than those in Thessalonica, for they received the message with great eagerness and examined the Scriptures every day to see if what Paul said was true.

( 2 Timothy 2:15) Study to shew thyself approved unto God, a workman that needeth not to be ashamed, rightly dividing the word of truth.
I realize now that I no longer believe certain doctrines that I just took for granted as being the truth without question.  I won’t lie and say this has been easy to admit.  It’s actually been pretty scary for me!  I don’t want to be  wrong after all!  But after thirty years of holding to a Christian Patriarchal  and Quiverfull mindset.  I no longer believe that men must be in control of everything or that women should just sit back and be silent and submissive. 

Having a child with disabilities has also opened my eyes and softened my heart to the plight of other people groups fighting for equal rights and acceptance.  I no longer believe that it’s the Christian’s job to judge or deny equal rights to our LGBTQ brothers and sisters. 

I believe that everyone is worthy of being treated with love, acceptance, and respect regardless of their race, religion, skin color, social class, abilities, disabilities, convictions, opinions, choices, lifestyle, sexual preference, or sexual identity.

*******

Thank you, Sylvia for being so honest with how your faith has evolved. I know my own has changed from a little girl who feared God to a grown woman who questions and seeks answers.  You can learn more about Sylvia, her beautiful children, and her faith at her blog, Living with Our New Normal. 


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

It’s the end of summer

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At the end of each summer, I always feel YES! THEY ARE GOING BACK TO SCHOOL! There is usually a happy dance that quickly follows. Sometimes there is singing. This summer for some very weird reason is different. 

This summer was freaking fantastic. 


Sure there were some hiccups.There was the scare that Boo would have to have a second spinal surgery. There were meltdowns when she was on break from her program. This year there were more joys.

We had company just about every weekend. Seriously the sheets in my guest bedroom have never been washed so often.

When we were not company we were in Vermont. Twice. Once for a family reunion and once for the best ever family vacation where we were a normal family for a brief time.


I had a visit from my best friends from Junior High School and from High School. They got to meet. It was epic. As in spending the night until 2am drinking wine and connecting. And forgetting we are all over 40 and had to get up with our children in the morning. Early the next morning. I knew they would get along. I do not know how I go so long in between visits from both of them. We all agreed we have to be better about reaching out to one another. That although we know we are there for one another, we have to remember to reach out and be needed. 


 I did not embarrass myself in any of the obstacle races I ran. Although I did end up in the ER for stitches after a dish-washing mishap. 

Boo rocked her MRI. She rocked it so well that we learned her spinal cord is perfect and she will not need to have a repeat surgery.

I did the ALS Challenge my way, explaining why I felt it was so important that the Challenge be more than just dumping ice on your head. My friend explained to me that it was supposed to be both: donate AND dump. When we looked back over our friends “challenges” though we realized how often the AND was left out. So I stand by my Challenge. Donate and dump ice. Please. Now. 

Abby had not one but three sleep overs. We all survived. My trick? Only one child can come over. That has been vetted with play dates to make sure they are not monsters that will destroy my house.

Boo’s summer program was the entire month of July and some of August. A blessing for all of us. I am deeply grateful for the teachers and specialists who gave up their summers so my girl will continue to thrive.

As I look over this summer I believe it is the first summer since I became a mom that I was present. That I didn’t use work to escape but to pay the bills. I was in the moment. Whether working with Boo to understand she could not have one more muffin or discussing if we would get a bunny. In a moment of weakness (or motherhood bliss) I said maybe. But it’s better than saying maybe you can get a pony.  

At the end of each summer I usually rejoice.

This year I mourn the end of summer. I want to be back there, in Vermont with my family. I want to be back there around the fire pit with friends. I want to be there on the beach watching Boo dance. I want that moment that she was whole. I want to wake up with no agenda other than to bask in the sun.

At the end of each summer I always feel exhausted. This summer I feel fulfilled. It’s a good feeling and one I will remember to recapture.


Finish the Sentence Friday

How would you finish the sentence: At the end of each summer I always feel….

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You are not alone

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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.


When they are not perfect

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I recently received a panicked text from a good friend of mine. Her son had just been “maybe” diagnosed with Asperger’s. My friend didn’t understand why she was so upset. She had long suspected something was off (?) with her son. He was certainly different in social situations than her other children. (One of whom is a diva extraordinaire) She had questioned doctors before and always been told “no”. But she kept asking because in her heart she worried.

When she got the report she knew what it could contain. So why was she breaking in the supermarket parking lot?

My response: You were just told in black and white that your little boy isn’t perfect.

Now before everyone gets up in arms I am NOT saying that there is anything “wrong” with her son. I am not saying that having (or maybe having) autism means you are not perfect. In all honesty, every parent has a notion of what their child is and will be.

We never think they will have a disability, a syndrome or a diagnosis. They will be a princess, a prince, a cheerleader, a musician or the President of the United States. 

When you first get that diagnosis it hurts. It hurts worse than any pain you can imagine, other than physically losing a child. There is a grieving process and you (she) have to allow yourself to go through it. 

Then you get your big girl warrior panties on and figure out what needs to be done.

I believe that I had it easier than most. At birth I knew there was something wrong (for lack of a better word) with Boo. I knew immediately there were health issues. Serious ones, that became non-serious. By three months I knew she was not developing correctly. I was better prepared that my child had a disability. I knew that Boo would be intellectually disabled long before the doctor broke the news to us. That she has come so far has been a miracle to me.

Yet still the autism diagnosis threw me for a loop. My defense at the time was that I had been told multiple times that Boo had something but it was not autism. Then it was. And it was okay. It was okay to struggle, to cry and to wonder what now?

My friend’s son has not been officially diagnosed. He might have Asperger’s or he might not. More testing is needed, should she decide they need a definitive answer. Either way, I said to her, you were just told in black and white your little boy isn’t perfect. 

Except he is, perfection just has a different definition now. 




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