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.

Challenges related to a disability

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Last week I was late and well, I’m still technically a week behind the postings. This week’s prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability. 

I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?

The truth is, though, loving a child with a disability doesn’t mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn’t see her climb on the counter and remove all knives from the strainer to get her Sophia cup). 

As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation. 
The true challenge related to Boo’s disability is that sometimes I am not sure if I am dealing with her disability or if I am dealing with toddler-like behavior. I waffle with pushing too hard to not pushing enough. I make allowances where maybe I shouldn’t. 

I wonder when I pick Boo up and carry her am I doing it for her safety, because she cannot walk that far or am I doing it because it is just easier?

Searching for schools, daycare centers, camps…a whole other challenge. Recently I was talking with a friend whose son has a cardiac condition. She was sending him to “real” camp for the first time. Not a special needs camp. Not a camp that was prepared to deal with health concerns. When you have a child with a disability every decision you make is important. In P’s case if her son has a cardiac event will the camp be prepared with how to help him? In Boo’s case if we decide to send her to camp will they understand she wanders? That she has a sensory processing disorder which may make activities difficult for her. That she turns blue if chilled and red/clammy when overheated. Each decision we make has direct impact on our child, the other children in the school/daycare/camp and their caretakers. Unlike Abby where I basically drop her off in the morning, P will have to make sure that she reiterates every day what to do in the event of an emergency.

That is something a parent of a “typical” child never ponders.

We worry more. Sorry, but we do. I worry more with Boo than I ever do with Abby. Every decision we make we have to balance on: is she safe, is this challenging enough, does she have enough support? I research every activity she does before it happens. 

Abby? Not so much. She wants to start riding, okay let’s go to XYZ barn. I knew nothing (and still do not) about horseback riding. I didn’t even know we should choose a style. Boo on the other hand? I never would have allowed her to begin riding without doing a few hours of research on the best type for her skill level.

It is hard to define the true challenge as it relates to Boo’s disability because she doesn’t have just one disability. Our challenge becomes balancing working with her disabilities while determining what is typical behavior. 

Even if it means we worry more.

I need crowd control

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Recently Abby started swim lessons. Yes, I know we are a tad late to getting her skills up. Especially as we are surrounded by water. But well, we’ve been busy. As I was sitting at her lesson recently I realized that just across the pool was a windowed room that gave you a view of the pool.

The room was filled with stationary bikes. In a moment of AHA I thought why am I sitting here when I could be exercising. No I wasn’t hit on the head. 

This week I brought my shorts and sneakers with us. As she got into the pool I went to the next room and entered the land of the bikes.

Giving thanks there was no one else in the room as I realized that while it had been over a decade (plus) since I belonged to a gym. And then I only took classes. I never used the equipment. But it shouldn’t be too hard, right? I have never. Ever. Like never ridden a stationary bike before. A real bike, yes. One that you pedaled and didn’t change your scenery? A new experience. I ran into a few issues. 

First the bikes are freaking huge. As in I hop onto the seat and can not only not reach the pedals but cannot reach the handlebars (are they called that if they don’t steer?). Jump back off and spent a few minutes figuring out the adjustment. I figure out how to get it to the kiddie height. Hop back on and cannot move the pedals. 

What the heck? Is there a brake? There must be, but now it seems that doohickey on the handlebars is a tension control. Okay now I can move. I am in the zone. Watching Abby swim, I think this is great. I get 40 odd minutes of uninterrupted exercise plus I don’t have to sit in the overheated pool area with a mom who wants to make small chat.

A guy walks in and says you having a bike ride? I’m like no a pedicure. Anyway with 20 bikes in the room guess where he chooses?  YUP THE ONE RIGHT NEXT TO ME!!! Then he strikes up a conversation. Asking me if I was a member of the “Y”. (yes) Because he is not but thinking of joining. I didn’t even have to ask a follow-up question to find out while his children do their lessons he “sneaks” into this section and rides. He comments on wondering why more parents don’t take advantage of the equipment while their children are in the pool. (Maybe they are not members I think). And goes on and on which would have been fine except just as I’m about to finish an Adonis wannabe walks in and again asks…
You having a bike ride?
Men are idiots. But at least this one was eye candy.
I tell him I’m just finishing up b/c my daughter is about done. He gets the bike on the OTHER side of me. I’m like really? There are now 19 other bikes that could have been utilized. But apparently my area is the perfect area in which to ride. And like I said, this guy was eye candy.

I try again at Abby’s next lesson. There is not one person in there. WHOOPEE and I am prepared. I have my ear buds, music playlist and Kindle balanced on the bike. A woman walks in and says, oh are you teaching a class?

I think: yes and these are my invisible students. 
Instead I bite my tongue and reply: Nope just riding and enjoying the quiet while my daughter has her class. She gets on the bike right in front of me so I cannot even see the pool. She is in street clothes and flip flops. Um, weird but okay. I have my ear buds in and am reading my book. One sentence in and….

YUP SHE STARTS A CONVERSATION!!! (I guess my enjoying the quiet comment was too vague)

She is not a member but saw me riding and thought she could get 20 minutes of exercising in since it was raining. I channel my nephew of the one word answers. It doesn’t work. I hear about how this seat is better than that seat. I look back down at my book as she begins telling me about her two children. I keep pedaling, keep the ear buds in yet it goes on and on. I was wishing for eye candy.


The “Y” needs better crowd control.

My Challenge: Jessica

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I introduced you to my friend “J” about two years ago. She was Boo’s Yogi before life got too crazy to keep up with it. I am happy to officially introduce Jessica, the mother of four beautiful daughters. She practices and teaches Yoga for the Special Child. In her “spare” time she organizes The South Shore Buddy Walk  and Co-Founded a non-profit Heart Beats for Down Syndrome. 

Her challenge?

My Challenge: Being Present

All of my life I have always looked to the future, planning and making lists, trying to be older. I used to sign up for things in magazines so I could get mail (at age 10). I couldn’t wait for responsibilities and bills and being an adult. I didn’t have to wait long. At seventeen, I became a mom, and not just a typical teen mom-but a teen mom to a baby girl with Down Syndrome.  This is not my challenge. As I write this, it’s nine years, four more daughters and plenty of bills later, and my challenge has nothing to do with the circumstances of my life. The responsibilities I always wanted are in abundance, and can be overwhelming and stressful. There are lots of things in my life that are challenging, but not internally, causing damage to my spirit. My biggest challenge is that I struggle to be present, to truly live in the moment.
I set my intention for this summer to be present, to be grateful for each moment, whether they are good or bad.  Not even two weeks in, I find myself at 8am counting the hours until bedtime. I spend so much time planning and rushing for the future: bedtime, back to school, vacation, that I am unable to be happy in the present. I have a history of anxiety and depression, and looking to the future has always been a coping mechanism for me. It has served its purpose, and I have better techniques now that I can use to get through rough patches. Unfortunately, as the saying goes: Old habits are hard to break.  By looking to the future, and planning, and making lists, I am depleting so much joy that is found in sitting back and watching my girls grow up and explore their world. Sure, I can get so much done when they are playing outside and doing crafts, but I lose out on seeing what interests them and how they accomplish things. I miss out on bonding and teachable moments by choosing to write lists instead of coloring and penciling in playtime rather then always making time for play. I want to wake up, and instead of rushing the day away, I want to be content just letting the day unfold and not view that as being unproductive. I may be too hard on myself, which is another challenge I face J, because it’s not like I don’t do all of these things, it’s just that I wish it could be more natural for me so that it could be more of an occurrence in my daily life.
There are so many times I am in the grocery store, frustrated and losing patience, when someone stops me and tells me I’m going to miss these days. I am grateful to these people, because I know it is true, but I usually have so much going on, I forget. By not being present in the moment, but rather operating on auto pilot, I miss out on what my girls are finding to be so funny and why they think the grocery store is a giant play place. If I were present, I might enjoy the shopping trip a little more (emphasis on little) instead of being preoccupied and snapping at them, which only leads to guilt and discontent on my end.  By committing to too much, and having to rush around, being present is impossible. I want to accomplish this goal by being easier on myself and reduce the expectations I set that cause me to lose out on the little things that happen when I am physically present but too preoccupied to notice and be grateful.
I’m sure that many people face this challenge, and some may not even view it as being worthy of such a title. It’s the way of life today.  For me, though, it is important and it is something I have been trying to work on, and fail time and again.  Again, setting the expectation for myself to change right now, this summer, and all of a sudden be present in every moment, is unrealistic. I just hope that some of the time, instead of rushing to the next moment, I will have the strength to just stop and watch it all unfold and find my happiness in that. 

*****
 Don’t we all, working moms, stay at home moms, dads, those without children…don’t each and every one of us forget to stay in this moment. This precious moment in time? We struggle with being HERE, right here watching the sunrise because our child woke up at five freaking am. Instead our thoughts race ahead to the coming day wondering how we are going to deal with this child who will be cranky in two hours. Rather than just enjoying the moment of their smile.

Even if it is five freaking am.

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

TBT–Freeloading

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Welcome to Throw Back Thursday, the Blog edition. A walk back in time to before any one read Undiagnosed but Okay. I hope you enjoy the trip!

(Originally posted 12-JUL-2012)

Our friends have a house at the beach. Every year we go and freeload for a couple of days. Abby is always excited to go and so am I. Who doesn’t love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don’t have to share with strangers.

Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.

This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!


All Abby wanted to do was surf. Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!). As the tide came in, Boo felt that it was safer back at the house, so she stole Allie’s board…

But Boo spent the day at the beach and was content to go home and relax with her pup.  We are going back this weekend. We hope to get Boo a little closer to the water!




A letter to myself

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I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual stick–to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt


Dear Younger Me,

I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable. 

Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.

First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.

Now you know it is really me, right?

Well here it is:

Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.  

Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.

Never give up hope. In yourself or in Boo.

Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.

Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended. 

As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time.  You just have to get through the what seems to be unending puke phase. But I promise it does end.

You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.

Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.

Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.

I won’t spoil the good parts for you. Be prepared to be amazed.

Love,
Older (but less tired) Me

PS–oh and don’t worry you will not cave and buy Abby a pony.







Lessons Learned

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I read a fantastic post from Eli at Coach Daddy the other day. So wonderful I decided to steal  ahem, borrow  ahem, use it for inspiration. Lessons he learned from the most valuable source ever: his children. It made me think, as much as I have tried to teach my girls, the lessons I have learned from them are immeasurable.


Lesson 1: Seeing the magic in the world. Abby, at 10, is still enthralled with fairies, sprites, Christmas elves and witches (the good kind). She will spend hours making fairy houses in the backyard. She will stop in wonder to show Boo a pattern on a tree. She will look in puddles and see a rainbow. Where I will charge forth through the woods, Abby takes her time to admire the magic that is a butterfly dancing on the flowers. As a parent you never forget seeing the look of wonder on their face when they meet a Princess.



Lesson 2: Seeing the beauty in the world. All parents have been the recipient of the bouquet of dandelions.   I hate yard work. As in despise it and wish I could convince David just to pave the entire yard.  Yellow weeds had sprung up in my daisy patch. In the middle of pulling them,  Abby stopped me and said: BUT THEY ARE GORGEOUS. So they stayed. 

Lesson 3: Slowing down. I race every where. I do not casually walk into the grocery store, I speed walk throughout the experience. I find myself doing this at home. Racing up and down the stairs, into the laundry room, doing whatever. One day Boo took my hand and said: SIT ERE. Just that, sit down mom. She sat down next to me and just looked around. Not at anything in particular. Just took a moment to sit. We sat for a few minutes, she said ALL DONE. I have learned to walk at their pace.

Lesson 4: How siblings should treat one another. I admit to not being the perfect older sister. Ever. My relationship with my siblings is, well…complicated. When I look at my girls though I see how it should be. That sibling love is unconditional. It is accepting one another as is, no qualifier. That every time you see one another, whether it was five minutes or eight hours ago you greet one another like this…

https://www.youtube.com/v/WHgntYWuEW0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata



Lesson 5: How to forgive. It amazes me, how quickly you can get over hurt feelings. If I have snapped at Abby (or her at me). If I mix up the girl’s lunches. If I forget an important event. If I show up at a birthday party a day early, at the wrong house. I am forgiven every evening before it is time for a good night kiss.




What lesson have you learned from your children? Join me in stealing Eli’s prompt.

My Challenge: Eric

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I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc…but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force. 

My Challenge: Autism

My name is Eric and my challenge is having autism.  Sometimes I have a hard time coming up with the words to say what I am feeling.  Sometimes I think people are acting a certain way for a certain reason and my mom and dad tell me that it is probably not for that reason.
I graduated from high school in May of 2013 and I did a lot of volunteer work.  I finally got a paying job last month and now I work as a dishwasher three nights a week.  I really like that I’m finally getting paid.  I am looking forward to my checkbook balance going up.  One day I would like to own my own car instead of driving one that my mom and dad own.

I like being able to drive myself and get around.  I’ve been driving for two years now and I haven’t had an accident.  I am a very good driver.
My favorite things to do are golf, bowling, watching movies, hanging out with my cat, working puzzles, building models and making things.  I created this marionette puppet out of pipe cleaners.
I thought it was pretty cool and brought it to school to show off.

I need people to be willing to explain things to me different ways so I can understand, but then I am just as capable as any other teenager to do jobs.  I like being useful at home and at work.

It is a challenge to have autism and sometimes I wish I didn’t have it but I am learning to live with it.

************
Wow. Eric. Just. Wow. Thank you for being so cool and honest about living with Autism. How it makes you, well, you but it also changes how the world perceives you. Here’s the thing, though. Almost every one of us knows some one with Autism. They are learning next to you in school but then they grow up. Just like you. They get jobs, they have a fulfilling life.  A person with autism has just as much impact on the world as one who doesn’t, thank you Eric for showing that. And good luck on your new job!

To find more information about Autism, please visit The Organization for Autism Research. 

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

Who Runs 4 You?

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I am now at number 1302 on my quest to find a buddy to run dedicate my runs. If you are looking for a pick-me up for you or your child please consider signing up! There is NEVER a cost to join. You can register at Who I Run 4

TBT–That Parenting Manual needs updating

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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.

Originally posted 23-AUG-2013

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift.  As I lay Boo on the couch to go to work, she throws up one more time….all over me.

Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.

And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is ‘exhausted’ but ‘surviving’.

And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.

But you need the paycheck. So you put your big girl panties on and go to work.

And think to yourself, I’d really like to meet the author of that book, because they have no freaking idea of what to expect.

They don’t go to Harvard wearing diapers

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A friend of mine is battling toilet training. She asked my advice and all I could offer her was good luck. There is nothing more difficult as a parent than toilet training a toddler. You can deal with sleepless nights, but eventually a child will sleep. They will either learn that they can cry themselves to sleep or they will learn if they cry long enough they can sleep with you. Either scenario, a child will learn to go to bed. You and/or your child become sleep trained.
You can teach your child to count by rote, learn their letters and dress themselves. But potty training? Exactly how do you explain to a child who has almost no language skills how to work their bladder system?  They can barely feed themselves without issue. How exactly do you let them know what a full bladder feels like? To even describe the sensation, there are no words. It is not something you can model. You cannot play/act it out. You cannot say “watch mommy” because while they see you sitting on the toilet they cannot see the inner workings of how it happens.
It is easier to teach your child algebra than it is to teach them how to use a toilet.
When my oldest daughter was young she was in a Montessori daycare that only went to age 2.9. After that she would need to transition to another school. One that required all children, upon admittance, to be toilet trained. It still amuses me that the Montessori school philosophy of “let the child lead” includes everything but potty training.
About six months prior to “graduation” I began to panic. My daughter showed absolutely no interest in the “potty”. During Spring break I was determined; we would succeed by eliminating diapers and putting on her big girl panties. Here was my brilliant if misguided plan:

Put on panties
Wait for her to tell me she had to go the bathroom
Run like hell to the bathroom
Here is what happened:
                Put on panties
                Walk to the living room
                She peed and said, “WHAT HAPPENED”
All over the hardwood floors, with a dog ready to mark his territory. As I am a slow learner, it took the rest of the day to realize this wasn’t going to work. I tried to reason with a two-year old. “Honey, you know that feeling you get right before you pee all over Mommy’s floor? That means you have to go to the bathroom”.
I tried, in vain, to explain how it works. I tried to make her pay attention to her body. I tried bribery. I gave her an M&M every time she was successful. I ate most of them.
After a few days of complete potty failure I was tired of doing laundry, cleaning the floor and keeping the dog at bay. I lit on what I think of is a brilliant plan. I went and purchased the pull-up. Realizing it was a diaper and she wouldn’t get the feeling of being wet, I put her underwear on UNDER the pull-up. Now when she messed, it was contained but she felt it. I thought this was the perfect solution. Surely now it would only take a few days for her to understand what it ‘felt’ like to need the bathroom. But I was mistaken. It took forever and she really didn’t mind being wet.
Finally a week before she was due to graduate daycare I realized that while no child graduates Harvard in a diaper, my kid might not make it into Montessori Pre-K. I did what any reasonable, mature mother would do.
I lied.
I walked her into her first day of pre-K, with a change of clothes “just in case”. I handed her off to the unsuspecting teacher, waved goodbye and on the way out of the parking lot I thought to myself:

I snuck her into pre-K I wonder if I can sneak her into Harvard?