Category Archives: friends

This is SPECIAL education

In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.

I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving.  Continue reading

My Best Friend Bridget

It finally happened. Bridget was invited over for her first ever official play date. A girl she went to school with last year had moved onto kindergarten without Bridget. Although “A” made new friends in kindergarten she never forgot her first “best friend” Bridget. She invited us to birthday parties and other events.

This would be the first time I would be just dropping off Bridget and going to work. In full disclosure, the mom is a trusted ESP who knows Bridget inside and out. I probably would not have been comfortable otherwise. Nervous, though, when I heard other neighborhood girls might be over to play.

Will they understand Bridget? I wondered. What if her friend is embarrassed or doesn’t want to play with her when her friends arrive? I worried.

For nothing. While I was at work worried that Bridget would not be accepted this happened:

She also played tea party, play dough (a substance banned from my house), painted and played. Bridget spun on the gymnastics bar and tried to do a cartwheel. She had snack and watched Sofia with the girls. She played Legos and colored.  Bridget played for hours with children her actual, not developmental, age and older then her.  It wasn’t noticed by any of the children that she was different than them.

My heart got three sizes too large as the text updates came in.

To “repay” our friend we had them over for dinner the following night. I watched as “A” interacted with Bridget. How she slowed down for her without realizing or explained how to play with the Barbie. I thought this is how it will be for Bridget. All her hard work, the therapies, the schooling will enable her to forge friendships. The typical peers will accept her for who she is and she will be included in their lives. Not because they have to, because they like Bridget.

Then “A” called Bridget a weirdo.

Here’s the thing though, Bridget was acting silly. “A” wasn’t being mean at all. She was laughing and treating Bridget just like she would any of her other friends. She called her on her silly behavior. When her mom (horrified) went to explain that “weirdo” wasn’t a nice word, “A” replied: it’s my best friend Bridget. I would never hurt her, she was just being silly and we were laughing.  I felt bad, honestly. I had overheard the exchange and knew “A” didn’t mean any harm. She was just laughing with her friend. Yet thankful that my friend had overheard as well and used the moment to make sure that harmful words would not used to describe my child.

Sometimes a word is just a word but it serves as a learning moment for a little girl who just repeated a term she used in school.

One word she will now defend her best friend Bridget against.

Her Best Friend Bridget

Unknown issues

The conversation started innocently. I was at a friend’s cookout. A mutual friend and I began conversing about CCD (Catholic education). Bridget is of the age to begin CCD and learn the rites of passage in the faith. There are just a few small problems with that: 1. While she is of “age” she is not of “grade” (most children begin at 1st grade) 2. Learning (enough said) and 3. while most kids do not understand what sin is they do know right from wrong.

Do I wait for Bridget to become “aware” or enter first grade or do I enter her now (at the age she should)? Do I push her through the system because that is what Catholics do, go through the rites or do I say screw it and just let those rites pass her by. Somehow the conversation turned to my unspoken deeper issue with God.

The woman innocently said to me, God only gives special children to special parents. Unknowingly opening a wound I had held in secret. She was trying to be nice, trying to comfort and she (probably) truly believes those words. As a mom living with a special needs child this was my response: Continue reading

It’s the end of summer

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….

document.write(”);

When they are not perfect

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




The Land that the Internet Forgot

You might have noticed I’ve been, ahem, quiet the past week or so. I had a very good reason. I visited a place where the internet hasn’t been invented yet. It’s the best vacation ever. 
Every year we take the girls (and Bailey) to the mountains of Vermont with 20 or so friends. It was great. It was filled with the sound of laughter. And because I am not an idiot, it was also filled with the sound of Sofia the First on Boo’s IPAD. There wasn’t internet but thank the Good Lord there was power.

And bathrooms. And showers. 

There was also seven days filled with friends, freedom for Abby, river rafting, hiking and just getting away from it all. This was our morning view. As in roll over, open eyes and see paradise.

There was also a husband and nephew who decided to go kayaking in the very LATE afternoon. Of course not having any cell service meant no one could check in and let me know that the river was a tad longer than expected and they would not be meeting us at the designated spot/time. Thankfully I did not need to find service and call David’s sister to inform her that I lost her favorite brother and son (who may or may not be her favorite depending on the day). Both boys were returned before the search party was created with hilarious stories of their adventure.

Bailey: Bye Dad, hope to maybe see you again

When you camp with 20 of your closest friends and there is only one child Abby’s age who happens to be her favorite friend, you make her summer. She and her friend were allowed to travel between camper #1 through camper #20 as long as they checked in. We heard, as she ran past: going to Mrs. George, going to Mrs. Black, Going to E’s Nana, Going to HERE. For one week Abby gets to have fun, not have to include her sister and experience being a kid of the 70’s when you were outside all day and every person in the neighborhood was responsible for you. No TV, no electronics just fresh air, rafting, playing in the river and being a kid. 


Boo is included not because of an IEP but because she is adored. There was also ice cream, fireworks, the best community dinners and enough laughter to wish next year could come faster than Christmas.


We hiked a waterfall. Well, we hiked. Boo had to be carried for 5 of the 6 miles as the terrain was a little unsteady for her. The last mile home she hit the flat ground running and I wished she would let me carry her again.


The reason, though, that this is the vacation I look forward to every year is that this is the one week where we are together. No distractions. No fire radio going off at all hours of the night pulling David away from his family. No Words with Friends pulling me away (okay, his is more important). There was no fighting over bedtimes, eat your dinner or practice your flute struggles. There were no therapy appointments, doctor appointments or similar tortures for Boo. 

For this one week we are a family off the grid surrounded by our friends enjoying the same experience.We are, for six too short days, a normal family. 

It was so hard to come home. It was harder to go back to work and stop being mom for 40 hours a week. I miss my girls. The minute we came home I found myself on e-mail, David turned up the fire radio, Abby had to be reminded to practice her flute and Boo returned to her appointments. 

Of course we have to return to the real world. As difficult as it is some days. Our vacation week reminded me that we have to remember to unplug less often and plug into our family more.




My Challenge — Lizzi

Today I would like to introduce Lizzi the author of Considerings where she actively tries to find the good in life. A blog that is sometimes fiction so good you think it is true, some days full of humor and some days despair. It’s a wonderful mix of writing and feelings. No matter what Lizzi faces each week she is determined to end on a high note with her Ten Things of Thankful post. A wrap up each Saturday where she sees the light in all of her clouds.


My Challenge: Despair



Several hours ago:

My challenge right this second, as I write this in an empty house steeped in melancholy and shattered expectations, is not to go to the cupboard in the kitchen and fetch down that shining bottle from the top shelf.

My challenge is to convince myself that it’s a sufficiently slippery path to prove deterrent – that taking the edge off with alcohol isn’t the answer. At the moment the only thing holding me back is the knowledge that I’ll regret the number of calories it contains. Ah serendipity, thou art disguised within even the soft and pudgy linings of low self-image.
My picture speaks for itself, but it doesn’t say how interconnected so many of those things are. It doesn’t tell of the (thus far) unbreakable bonds between an abusive childhood and my inability to disconnect and stop assuming responsibility (or blame) for aspects of my current situation. Or those between spousal illness and miscarriage. And infertility. And rejection, leading to further low self-esteem. And depression, which is riddling our relationship like woodworm, gnawing away at the things we thought we held dear, and now call into question, time and time again because “what if we hadn’t…”

It’s harder after the high of such a wonderful, fleeting day, where a bloggy friend and I met in person for the first time. We stood in glorious sunshine on the beach and let the warm ocean bathe our feet as we talked and talked. And later we went for cocktails and gelato and things were wonderful. And now she’s gone.

And it’s harder because the day before that (my fourth anniversary) I lay crying, once again rejected (because his illness allows him no other option), utterly desolate and we discussed whether or not our marriage would last. Because we ‘clinked’ our fries together in the restaurant in a desperate show of silliness and recognition of the occasion as tears bathed my cheeks and his eyes turned to pools of despair. Because we had cocktails and got buzzed and all that went away for a while, and with the corners of the situation tamed by tipsiness, we hugged and laughed and the shit went away for a while.
And it’s hard because I have to find a silver lining and even though the sun is up and Maslow would be convinced I should be content, at least, I really, really, really want that drink.

Now:

Writing is cathartic anyway, but particularly from a place of hurt and desperation, because it forces some of the challenges to come into stark clarity, their contrast perhaps shocking, as I lift them out of the tangled mire of mind, determined to examine them in the light of day and describe their form.

In writing this, I was able to trace those unbreakable strings which bind me so tight. And having traced them, I was able to explain them to Husby, who *listened* and cried with me as he realised the extent to which his illness and my smorgasboard of challenges crash headlong into one another, leaving us both trainwrecked and licking our wounds.
I reached out, not for a bottle in the end, but for a friend, who was in the right place at the right time to talk me down and just hear me, and make me feel less alone.
The aloneness is hardest, especially when part of what’s trapping you is your own mind, your own thought patterns and your destructive, determinedly negative perspectives. In point of fact, the (seemingly relentless) shitstorm of life is one of the main reasons I’m part of a new blogging initiative – the SisterWives (http://www.sisterwivesspeak.com) – a group of writer friends whose collective history reads like a manual for surviving almost every kind of crap that life can throw at a person. We are damaged goods, but determined to live life in Silver Linings, and *somehow* turn our hurts to helps. We don’t want others to feel alone. We want to find strength in being vulnerable and honest and sharing our truths in the hopes that they’ll somehow be useful to Someone Out There.

Our motto, (the former part I struggle with, but am trying to take on board): Alone we are enough; Together we are stronger.

Thank you, Lizzi for your honesty with your challenge. All of us find moments of despair. When it gets too much. When you wonder if that shiny bottle will dull the pain. Trust me, it just makes you puke if used for that purpose. There are so many challenges interlinked, as Lizzi has shown. But there is support out there for just about anything you are facing. This virtual world is sometimes all you need to realize you are not alone. I’m glad she still sees the hope in all the clouds.

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

Sorry I don’t have a process.

My first ever for-real blogging friend Kristi recently tagged me in a post for me to explain my writing process. I thought it was cool she thought I had one. Kristi is not even in the same stratosphere that I am in when it comes to the blogging world. But she pretends even though she started blogging three months after me and then became wicked famous we are on the same planet.


Kristi is the mom of Tucker, a quirky artist, the founder of Our Land (which I get credit for telling her to go for it) and the person most likely to be sitting next to you in jail after a Billy Idol concert. 

Okay here are the questions I am supposed to answer. 

1. What am I working on? Well I was working on trying to do the Twisted Mix Tapes correctly for my friend Jen Kehl. But then she got retired the series. I hope it wasn’t my fault. It was either that I messed them up for finally got them right. Either way I have some Catholic Guilt going on about the end of the series.

Seriously though, I am working on making the What’s Your Challenge series a phenomenon online and in real life. I love that people are being so open with how we are all so freaking similar in our struggles. That all of us have a challenge (or two). But that our Challenge doesn’t define who we are deep inside. I hope it makes someone stop for just a moment and instead of assuming or judging they stop and say, “how can I help”.

2. How does my work differ from others of it’s genre? Truthfully it doesn’t. I think all bloggers share a commonality. We blog about families, for example. Even blogs dedicated to special needs have a common focus. For my blog I think it is a mix. I try to educate via the Challenge. I try to show that there is both heartbreak and joy in parenting Boo. I didn’t start my blog to share about Abby. But she is just too hysterical not to share. I also try to show that you can survive anything with a little bit of humor.

Most importantly I try to use my blog to show that you are never alone. You just have to find your village. Through this process my village has grown to be a small town of support. 

So I think my work differs because it isn’t about one thing. My blog doesn’t fit a niche. Instead I just share the everyday moments that make up our life with Boo. 

3. Why do I write what I do? I can’t help myself. That is the honest answer. David always says I have no filter. That carries over to my writing. I feel like I have to write. To show people that Boo is not just a child with special needs. That Abby is not just the perfect big sister but that she also comes by her sense of being sarcasm naturally. 

But more, that it is okay to break now and again. That it is okay to say this sucks sometimes. That when your child goes five years without a diagnosis and then some doctor says they think she is autistic it is okay to flounder. I believe so many warrior moms think they always have to be strong. I write to show them yes be strong, but also break and lean on others. 

I also write because David and the girls give me so much material. I mean really, how many moms can write about the time their husband who swore the math problem was a trick question? 

4. How does your writing process work? Okay, still cracking up that Kristi thinks I have a process. 

I seriously do not have one. There are just moments that resonate that I have to share. If the post is controversial I will usually send it to Kristi with a “should I” or “would you” hit publish? If it is a post I think will make my mom cry I send it to Tia first with the same question. 

I do not do a lot of editing. What you read is exactly how a conversation would go if we met in public. I want my blog to be authentic. To be me. If you saw me in the supermarket we could begin a conversation without awkwardness. There are some posts that I write in my head first. Then I get in front of the keyboard and BAM. It’s either great or not.

****

And now it is time for me to give a shout out and tag my fellow bloggers to ask them about their process. I’m totally cheating and stealing Kristi’s questions. 

First up is my friend K from Transcending CP. K is beyond awesome. She is one of the reasons I started the Challenge program at Abby’s school. K is a college student who enjoys fried clams and making my heart grow ten times to big by reading her blog. If you ever feel that life might be unfair but it something worth living this is the one blog you should read.  

Next up is Kate from Another Clean Slate. One day I asked Kate to run a Mullet race. She ran but refused the mullet. Funny thing is she still talks to me! Kate is like me. Kind of an open book, which we both love to read. She is a super cool urban professional and writes about everything life is: wine, books, food and fun.

Last up at bat because they are hitting a home run is my boyo Isaiah at Isaiah Dot Com only because I have to know how he comes up with the way that makes his mom reply there is no maggot season. I cannot wait to see how he replies to some of the questions. He can think of it as summer homeschooling for kids of bloggers.

*******

And that is is. That is my writing process which means there isn’t one. With a few tags in the mix to keep the game going. Thanks, Kristi for being my go-to girl. 


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!