Category Archives: friends

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!

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.

To the Class of 2014

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Dear Graduates,

I know you are getting a lot of advice as you transition from High School to College or from College to the “real world”. Everyone is telling you to enjoy this, the “best time of your life”. As my brother pointed out to me, this isn’t quite true. You see the best time of your life has already happened. At the same time you are no where near the best time of your life.

The best time of your life was your first step. Your first day of school. Your first crush. Your first kiss. Your first bike ride.

The best time of your life was the moment you received your license. The day you pitched your first no-hitter. The day you scored the winning goal or you starred in the school play. The night of your first sleep over.

The best time of your life was finding your best friend, for real.

The best time of your life was your first dance, your first homecoming, your prom, your graduation day.

The best time of your life will be your first apartment, your first love, your first ‘real’ job. The day you started exploring the world without a chaperone. The day you realized you can still call home.

The best time of your life will be taking trips with friends, experiencing the world at 18, 28, 38 and beyond. You will laugh and cry and say remember when you talk about those trips in the not so distant future.

The best time of your life will be finding your true love, the person who makes you whole. Your new life together, starting your family.

The best time of your life will be when your child comes into your life, when you explore the world through their eyes.

The best time of your life will be after the children are grown and you are still holding hands with your mate.

You will have many best times of your life. Don’t focus on this fleeting moment, don’t squander or yearn for this time in your life. Live each moment as it should be lived.

That moment will become the best time of your life. Enjoy it.

Throw Back Thursday-Turning Right

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

Throw back Thursday-Blog style

(Originally posted 15-JUL-2012)

Although Boo is not autistic, she exhibits a lot of similar behavior. This weekend I read an article in Outside magazine titled “Little Boy Lost” by Dan King (http://www.outsideonline.com/outdoor-adventure/outdoor-skills/survival/Catch-Me-If-You-Can-20120801.html?page=all) . It is about an 8YO autistic boy that was lost for five days in the forest. In the article they state that it is estimated that “40 percent of children with autism will go missing at some point in their lives” (page 75 section 4 of the article).

It happened to Boo this week. She not only escaped from her classroom, she wandered quite far from the class into the hallways of the school.

For a little back-story, when Boo first started this program I repeatedly warned them that she needed a one-to-one dedicated aide. I also warned them of her tendency to wander. She would not be misbehaving, just something may catch her attention and the next thing you know she is down the street.

Fast-forward six-months and Boo’s teacher not only requests an assigned aide, an updated IEP and a transition to a dedicated special needs class for half the day. This new program began this summer. Again, we expressed to the teachers & aides of Boo’s tendency to wander. It was agreed that all doors would be shut and that Boo would have a person assigned to her well-being.

Thursday it happened. One teacher thought the other was working with Boo, when they notice the door was opened (handicapped, so much easier to open for Boo!) and no Boo to be found. They were unsure how much time had elapsed, quickly got coverage for the other children in the class and went to on a Boo hunt.

This is when I know that Boo has a guardian angel looking out for her well-being. As this is the summer, the school is not locked to the public and the front doors were wide open. Had Boo taken a left out of the classroom she would have been a short walk to the great outdoors. Had this been during the traditional school year, there would have been students milling around and she might have been tripped or run down by an energetic child.

But she took a right turn and ended up in the middle of the school. Quite a distance away from her class, but still a right turn. One that led her into the relative safety of the indoors. Thankfully her teachers found her in short-order, thankfully she is fine and this was a lesson learned for all of us.

Her daddy, rightfully so, went nuclear when I told him. He didn’t understand why I was calm about the incident.

First, I have been waiting for this to happen for six months and was just thankful that it happened in a somewhat controlled manner. Secondly, we are not saints and it has happened to us! In the front yard, blink for a moment and she is gone. Sure the teachers were warned but until it happened they would not believe us. Lastly, I do not want to ever think the teachers cannot tell us something. I want them to know I not only will I not ‘overreact’ I will work with them to figure out a solution that will work in the school and home too.

I wasn’t going to post about what happened on Thursday. But after reading the Outside magazine article, I felt compelled to share the story. Boo was missing for, at most, 10 minutes and I was completely unaware. Because Boo is virtually non-verbal, had her teachers not told me, I would have never known. Had Boo taken a left-turn and been found by a stranger she would not have been able to give them any information. Even scarier, had she taken a left and gone unnoticed she very easily could have run into the busy street. She is so petite, a driver may not have noticed until too late. The what-if scenarios are endless and nightmarish.

If 40% of autistic children ‘elope’ how can they not figure out why? With all the money in medical research, they can figure out how to keep a man happy but not our children safe.

Personally, I am going to see if they can get a door alarm for Boo’s class. I am going to look into a medical alert bracelet for her to wear with her name and number (the trick will be making her wear it). I may even go the extreme and start labeling the inside of her clothes!

I would be very thankful for any other ideas. What do you do to make sure your child is safe if they wander?

40% of autistic children go missing. Thank God Boo took a right-turn.

My Challenge: Julia

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All of us have challenges. Each and every person has to struggle to do something. This Spring at Abby’s school we charged the staff and students to share their Challenges. From the cute (can’t catch butterflies) to the heartbreaking (my mom died) every child and teacher shared. With sharing came hope. Sharing led to compassion. Sharing led to being free to say that while the child might have a challenge, the challenge wouldn’t stop their dreams.

After I posted the program my friend Kristi at Finding Ninee encouraged me to make a Challenge Series. In reaching out to a few friends the response was amazing. May I introduce you to my first guest, Julia.

Julia is a wonderful little girl. We first met her and her family at the Pediatric Therapy. She spends hours each day working in school to learn how make her cerebral palsy work for her. This little girl is a fighter. Defying the odds and expectations of anyone foolish enough to try to put limits on her. Julia loves swimming, horseback riding, picking her sister up at the bus stop and bike riding.

Julia is 5 years old and her challenge is Cerebral Palsy. But don’t feel bad for Julia’s challenge, she just needs some extra time and help. Her smile says it all: Her Challenge makes her stronger.

There are over 800,000 persons in the US with Cerebral Palsy. Cerebral Palsy is a group of disorders that can affect movement, learning, hearing and thinking. Like many other syndromes, children and adult with Cerebral Palsy are as unique as their personalities. To learn more about Cerebral Palsy please visit United Cerebral Palsy

Thank you, Julia for sharing your smile with us today.

This is the inaugural post for the My Challenge Series. To submit your challenge, take a photo holding a sign that says, “MY CHALLENGE IS X” with a short about how you do not let your challenge define you to firebailey@Gmail.com

My DIY guide

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I am not a do-it-yourself type of gal. I semi-joke that is why I am married: I don’t have to kill bugs and I don’t have to do projects around the house. The bloom fell off that rose very quickly and I now kill bugs. However I have successfully managed to avoid any home projects since the time I picked up a power drill and missed the wall…

One of my few skills, though, is hosting Ladies Night In. A night where there are just three rules:

1. Everyone bring something to drink
2. Everyone bring something to eat
3. Everyone leave their husbands at home (kids, though, are welcome)

As I, ahem, get older I am learning to value my friends more. I need them to be a part of my life more than I need that treasured M&M. With Boo it is impossible for me to be as there for them as they are for me. Ladies Night In solves that. It keeps us close, keeps it low-key (and cost!) and allows me to catch up with those whom I enjoy.

Total Ladies: 23
Total Children: 12
Total Cost: Not important (but for me, less than $15)
First guest arrived: 5:30 pm
Last guest standing: 11:45 pm

The DIY trick is to mix it up. Stop yourself from just inviting a core group of friends. This weekend we mixed it with Boo’s therapy team, friends from high school, friends from the neighborhood, PTA, friends from the therapy waiting room, etc…not everyone knew one another. The stories were, for sure rehashed, but re-enjoyed as we laughed and got to know one another. By the end of the night people who had never met were sharing parent survival tips, workplace stories and sangria. By the way, the sangria was fabulous!

The kids? Heck they had a blast. The only rule for them was no food in the bedrooms and no kids inside the fire pit. Yeah, that sounds like a no-brainer but these are kids I am talking about. You know what? Not one kid fought. I don’t even think one child came and told on another child for a perceived wrong-doing. Every child from 4 to 12 got along and played. The ladies were having so much fun, we kind of (but not really) forgot the kids were there.

The food was delicious. My kitchen was in shock with all the healthy fruits and veggies that were brought. I am still wondering what the heck hummas is and thanking God that someone brought brownies so I knew it was still my house.

As they were leaving kids were asking when the next Ladies Night In was and trying to plan one on their own. Even the token boy-child had fun and said his brother missed out on the best night of the year.

The next morning I met one of my friends from Ladies Night for our first 5k of the season. We both said it was so refreshing to see our neighbors who live next door yet we never seem to have time to do more than wave on the way to work. That we needed this, this time to just laugh and not worry and eat.

So this weekend, treat yourself to a DIY project you can actually enjoy. You do not have to do it as crazy-big as mine got (who knew everyone would RSVP yes and bring friends!). Invite a few ladies over, share some time just rehabbing your kitchen with laughter.

Mom in the elevator

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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.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few ~~years~~ decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions.

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

Your partner. You are in this together. Remember that and hold them to it.
Your best friend. They promised to be there forever. Hold them to it.
Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that.

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me.

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier.

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.

PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!

Without support….

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Without support I would be lost. Today, while I have so much to be thankful for, I am going to focus on the one thing most important.

Today I am thankful for the friendships that have become the rock by which I stand firm.

I am thankful for the friend who meets me at 6am for a trail run, even though it means she does a brisk walk while I try to run to keep up.

I am thankful for the friend who invites me for Chinese but understands the Bruins are on.

I am thankful for the friend who is my mom, the one that lets me show up for Easter Mass because she gets that is how organized I am.

I am thankful for the friends who read my Looking for Dr. House post and not only send me encouragement but names of physicians and others who might help settle my fears.

I am thankful for the friend that is my daughter, who while she will forgive me for not packing her socks she will never forget. Nor will she stop reminding me about the time I forgot to pack her underwear.

I am thankful for the friend who is on vacation but still reads an e-mail from me (that said not to open until she returned) and quickly responded.

I am thankful for all the friends that have supported our Bridget’s Brigade.

I am thankful for the friend who lets me send her a potential blog post and gives me her honest opinion about it.

I am thankful for the friend who made Abby’s day this week by giving her a play date with a known friend and a new one.

I am thankful for the friend who let me guilt her into participating in Mudderella. If you are looking for something to do on Sept 6th and are in the area join our team: We Mud be Crazy.

I am thankful for the friend who understands that it is impossible not to sign along with Sophia the First. And thinks it’s weird that the mom calls the King: Rollie.

I am thankful for the friend that understands I will mess up every tweet (twit?), blog hop and sentence prompt but lets me play anyway.

So thank you, all of you, for giving me what I need to get through this thing we call life.

3.5 I took the pledge. Will you?

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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.

The Merriam-Webster Dictionary defines retarded as “sometimes offensive : slow or limited in intellectual or emotional development”

Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped.

Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.

My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition.

Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.

Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting.

They used it anyway.

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.

Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:

And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.

When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?

Never ending journey

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It wasn’t what I expected. For some reason when I was little I thought all I have to do is survive until I am 18. Then life would be perfect. I would be all grown-up. I would answer only to myself. I would be respected. I would be content. I would stop searching. I would know that this is where and when I was supposed to be.

As a little girl I knew just how my life would be. I would graduate high school and viola be a grown up. I would have a great job (without any training mind you). I would have a home, a husband who doted on me and children who were well-behaved, respectful and put me on the throne I deserved to be placed upon.

I had no idea that the throne would end up needing to be cleaned so often. With bleach. But I am getting ahead of the story.

I turned 18 but had a few more months of high school. No moving out for me. I did not apply to college, who knew there were deadlines? Instead I ended up at a community college for about two months. I met a boy.

Boys. I tell you it all goes wrong with boys. I thought for sure this was my prince. And he was for a few years. One would think that moving in with a boy made you all grown up. But it doesn’t.

The boy disappointed. I am sure the girl disappointed him as well. We failed one another and we moved on. I was sucking at this grown up thing. The silver lining years later was knowing that while we failed we did not mess up one another. We didn’t make the mistake of getting married and having children with a partner who really never could be the partner we needed.

A few years go by. I get my act together with a real job and a semi-real apartment. (Man I miss that apartment). I met a man. A good man. A man with a house. A man with a job and savings and a budget. He was (I thought) grown up. We dated. We got a dog. We moved in together. I learned he wasn’t quite grown up, but neither was I.

We got married. Had a child. Built our dream home. Continued working at a job I enjoy. I went back to college and although that did not change my career. We had another child. The ~~first child~~ dog went to doggy heaven. A few years went by and we got another dog.

Life continues.

I hit the big 4-0 more than a few years ago. Certainly now I am a grown up, right? Except I am still not. I worry if people like me. If I am accepted. I still am looking for that magic wand that makes life a fairy tale. I worry that I am failing this life. That I am failing that man and the child and the dog. Yes, I worry that I am failing the freaking dog. I need reinforcement from friends and family that I am doing a good job. I worry that I am not career-orientated enough, that I will never succeed or move “up the ladder”. I lose sleep over knowing I am not the parent I am supposed to be. I try to give my best and wonder if I will ever be good enough. At anything.

The most unexpected part of being a grownup is that I never feel I am one.