Monthly Archives: August 2012

out here on my own

by Jennifer, fasten her seatbelt

It’s been four months since my last post…

Sometimes I wonder where I’ve been
Who I am 
Do I fit in. 
Make believin’ is hard alone,
Out here on my own.
On a darkened stage one afternoon, Coco Hernandez (Irene Cara) sang what was deep within her heart as Bruno Martelli (Lee Curreri) listened intently.  The movie Fame premiered in 1980 – I was 15 years old and destined to be a brilliant actress – for god’s sake… I had already been cast in a supporting, ensemble role in a high school production!
We’re always provin’ who we are 
Always reachin’ for the risin’ star 
To guide me far
And shine me home
Out here on my own.

Needless to say, thirty odd years later I am not a brilliant actress -that dream faded along with the popularity of the movie Fame (but wouldn’t it just be a hoot if I was?).  I am a wife, mother, artist and ‘accidental advocate’.  I have a wonderful and caring family, and though I am not alone, the song ‘Out Here On My Own’ seems as relevant to me today as it did in 1980, yet in such different way.  So, how exactly does this fit together?  Lack of posts?  The movie Fame?  Out Here On My Own?

Mid-Summer I posted this image:
It was meant to be followed up immediately by this post.
Apparently that didn’t happen, as it’s now the end of August and I’m just writing this.
When I’m down and feelin’ blue 
I close my eyes so I can be with you
Oh, baby, be strong for me
Baby, belong to me
Help me through
Help me need you. 

When the girls were younger, my husband and I had made the joint decision that I would stay home with them.  It’s been equally rewarding and challenging as many of you know.  However, as their needs grew, I felt my own identity slipping away.

And then it hit like a ton of bricks.  For about the past four months – I’ve been feeling lost.  I find myself becoming more withdrawn as each day passes.  I’m sure we all feel like this at times – a bit lost.  With so many things to take care of, I find at times I take care of nothing.  We are mothers, wives, providers, educators, advocates and problems-solvers… but sometimes I wonder:  Who am I?  It sounds so simple, and I should be able to answer.  Who. Am. I?

Until the morning sun appears 
Making light of all my fears 
I dry the tears
I’ve never shown
Out here on my own.

The exterior me shows strength and confidence.  Yet the interior is slowly ripping herself apart.

S.    L.     O.     W.     L.     Y.

We’re talking a five to six year tear here.  Corresponding with???  You betcha – our diagnosis.  You see, I think there has always been a little part of me (2%? 5%? 10%?) that has been living in denial.  Who knows the actual percentage, but it gets pretty loud every now and then.  And then I think to myself, by admitting that this percentage even exists, what does that say about me?  That I don’t support my daughter?  That I don’t accept her for who she is?  Emma’s a gem – I love her fully and completely.  Sometimes, it’s hard though -it’s really, really hard.  The play dates, the birthday parties, the sleepovers… all those ‘typical’ activities she sees her younger sister partaking in, but she never gets asked to partake in.  But everyone’s so ‘friendly’ to Emma, right?  There’s a BIG difference between being ‘friendly’ and being a ‘friend’.  The hardest thing you will ever do as a parent, will be to watch the things you have absolutely no control over take place.

When I’m down and feelin’ blue 
I close my eyes so I can be with you
Oh, baby, be strong for me
Baby, belong to me
Help me through
Help me need you. 

As I work through this song – ‘Out Here On My Own’, I ask myself:  Who is Coco/Irene asking ‘Baby, be strong for me, baby belong to me.  Help me through, help me need you’? My only answer can be:  HERSELF.  She will find it within herself to get through, to be strong, to be who she needs to be – to be the best she can be – for herself.  I need to be strong for myself, so I’m able to be strong for my daughters.  I need to know who I am, so my daughters will be able to know who they are…

Sometimes I wonder where I’ve been 
Who I am 
Do I fit in
I may not win
But I can’t be thrown
Out here on my own
On my own.

Over the summer, I had the opportunity to visit with two very dear girlfriends (both whom are living in different states now).  They’re friends from college – you know the kind… the ones who have known you since you were just finding your feet.  The kind of friends you don’t have to ‘edit’ yourself around, because they’ve already seen you at your best and worst.  We went to art school together, so trust me… there were plenty of ‘worst’ times!  We shared so much in school:  laughter, tears, inspiration!  I miss those ladies.  Seeing them – albeit separately – enabled me to find some of those small pieces of myself again… to begin to answer the question Who I am.

I am an artist.  I am a wife.  I am a mother.  I am an advocate.
I am a gardener.  I am a photographer.  I am an avid reader.  I am strong.
‘To reach your destination… First you must begin your journey’.

As I mentioned to a friend earlier today:  It’s time to take off the dirty old robe and toss it away.  It’s time to start this new journey, to rediscover who I am – to be reacquainted with these different aspects of myself.  In order to ‘reach my destination’ Fasten Her Seatbelt may change a bit, for not only will this be about Emma’s journey, but mine as well.

Title Inspiration:
Irene Cara:  Out Here On My Own

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Jennifer lives in Northeast Ohio with her husband, and is the proud mother of three beautiful girls: Frannie (9), Emma (10), and Isabella (22). She is an artist, fine jeweler and educator. Emma was diagnosed with an ASD at age 4 and Frannie was diagnosed with ADHD and Dyslexia at age 6.

With Emma fast approaching adolescence, Jennifer found there was not much information available for ‘girls, autism and adolescence’, thus ‘Fasten Her Seatbelt’ was born. Using ‘Fasten Her Seatbelt as a vehicle to re-account life experiences both pas and present, Jennifer hopes to connect with other parents on the same journey. So, hop on in and join her as she travels the world of adolescence on the spectrum.

This post was originally published HERE and used with permission.

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Time For Me

by Ilene, My Family’s Experience With Autism

There was a post here recently that made me think……the post talked about how, when Mom was away at a conference, she was able to do things WHEN she wanted to and HOW she wanted to.  She was able to shower at her leisure, eat meals when they were still hot, all the things that so many take for granted, but special needs parents struggle with every day.

Then I realized something about this summer.

I had been doing just that since school has let out.

Early morning routines were the same as normal – the insanity of getting everyone up, dressed and fed was still there.  But after they finished breakfast, I sent my 3 children down to the basement to play.  I gave them their phone, they could play on the computer, the Wii, with each other, whatever.  And I would make myself a cup of coffee.  And I would make breakfast for myself.  And I would eat it leisurely.  I would jump on the computer and check Facebook, perhaps play a short game, and they would all be downstairs.

I kept the door open, listening for problems.  I would go to the top of the stairs when someone needed something.

But in general, I had found that independence.  And because of it, here I am, 10 days before the start of the school, and I still have most of the sanity that I had at the start of the summer.

Sometimes you have to force things to happen.  As Nike used to say, “JUST DO IT!”.  If you need that moment, TAKE IT.  If you want to sit and have a cup of coffee while it’s still hot, then take 15 minutes and sit and sip that coffee.

I know this is much easier said than done.  And that’s never going to change.  But if you don’t take that first step, you won’t get anywhere.

Trust yourself, and trust your kids.  I’m not instructing you to go out and run your errands leaving them unsupervised…..just sit in a corner of the same room so you can still see them, if you’re not comfortable being separated from your children by a flight of stairs as I have suddenly discovered I can do.

When you wake up in the morning, tell yourself this.  I WILL take some time for me today!  I WILL sit and have a cup of coffee (or whatever the right thing is for you)!  I WILL give myself a 15 minute break to catch my breath.  And I WILL feel better at the end of the day for doing it!

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My name is Ilene and I’m a happily married stay-at-home-mom to 3 wonderful children.  My eldest is a typically developing 6 year old first grader.  I also have a set of girl/boy twins who are recently turned 5, both diagnosed with Classic Autism.  My daughter has also been diagnosed with ADHD.

Life is not what I imagined it would be at this stage, but it’s still my life, and it’s good.  We have good days and we have bad days, just like everyone else.  I started blogging to cope with things not progressing the ways that I wanted them to go.  Sometimes I vent about problems.  Sometimes I share in a glorious moment.  Sometimes I try to educate others.  It really depends on what I feel like saying when I sit down at the computer to “blog”.  But I do promise that everything I write is honest and heartfelt, even though I may contradict myself from time to time as I learn new things.

I hope to share with others what we go through.  And I hope you enjoy reading our stories.

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Home

by Alysia, Try Defying Gravity

Re-entry has been hard.

Last week, I spent three days at a blogging conference in New York City. Actually it was four days and three nights.  I went down with my friend Kristin and met up with more friends.  I went for several reasons: to shameless promote this blog and the others I write for, to celebrate the work of the bloggers I love, and to get away and recharge my mind and soul.

To put my oxygen mask on.

And I did.  I slept alone in a bed with no child-size feet climbing in and kicking me at 3am.  And because I wasn’t waiting for those feet to arrive, I actually slept through the night.  I showered every day.  I didn’t have to ask anyone if I could pee.  I just did.  I had three meals – MEALS – a day.  Coffee and eggs and bacon for breakfast.  Soup and sandwiches and water for lunch.  Dinners out in the city when I was hungry, not because it was time to eat.

Oddly enough, I wasn’t tired at all the whole time.  I took some moments for quiet time in our hotel room between conference sessions and other events, but I never felt the need for a nap.  I walked around Times Square, went up to Columbus Circle, moseyed up and down the exhibition halls carrying just my purse and a small bag.

And again, oddly enough, I never felt the urge to write. Here I was at a blogging conference. But I didn’t have any words that needed to come out.

Of course, I missed my family like crazy.  I called home several times a day and texted with my husband all day and night.  Their voices sounded so far away when I heard them on the phone.  By the time the conference was over, I was ready to return to them.

But what I didn’t realize was how much I wasn’t ready to return to me.

What happens when you’ve had the oxygen mask on…and then you take it off?

You choke.

It wasn’t until I was away alone that I discovered how little I actually take care of myself when I’m at home.

Almost immediately after being in my house, I felt suffocated by all that surrounded me.  Not my kids, but by the enormity of everything else.

The clutter.  The projects that I had on my summer to-do list but never looked at.  The piles of “things” that have been left to fester because of the constant demands on my time.  The fact that school is starting for my kids in two weeks and there will be homework battles/IEP goals/lunches to pack again.

Quickly I slipped back into old patterns.  Cold coffee reheated 3 times in the microwave and forgotten there. A handful of M&Ms and a granola bar in the car on the way to Target for breakfast hours after the kids already ate theirs. A Wendy’s chicken sandwich and fries on the way home from Target. Falling asleep on the couch at 2pm and another handful of M&Ms to wake myself up again.  Two days, I didn’t bother to get dressed until noon. On Thursday – five days after coming home – I realized that I hadn’t washed my hair since I was at the hotel.

I’ve gained three pounds in the nine days since I’ve been back from New York.  Some of that is thanks to my husband’s rediscovered love of cooking for us all while I was gone.  But some of it is the increase in sugar and junk and food on the run.

And once again, I can’t breathe.

I have to figure out how to take care of myself here in my own world.

How to put on the oxygen mask in my own home.

I have to get back to the basics of what makes us feel human again.  Food, clothing, shelter.

This morning, I’m starting with a hot coffee and a real breakfast.

Anyone care to join me for some eggs and bacon?

Well, I’m going home, back to the place where I belong
And where your love has always been enough for me
I’m not running from, no, I think you got me all wrong
I don’t regret this life I chose for me
But these places and these faces are getting old
So I’m going home, well I’m going home” – Home by Daughtry

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Alysia is a stay-at-home mom living in Massachusetts with her husband and three boys, ages ten, six and three. Her middle son has sensory processing disorder and was diagnosed with autism spectrum disorder in December 2009 at age 3 ½ and her youngest was diagnosed with autism at age 3. She currently writes at Try Defying Gravity, her personal blog recounting the joys and challenges of raising three boys. She is the editor of The Oxygen Mask Project site and the managing editor of The SPD Blogger Network.

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Stroll With It, Baby

by Cynthia, that cynking feeling

I was in the best shape of my life before I got pregnant.

I have always been a chubby person. I was a fat kid who grew into a fat adult. Family lore has it that “cookie” was my first word. I love to eat. Unfortunately, I eat when I’m hungry, when I’m not hungry, when I’m stressed, when I’m happy, when I’m bored, when I’m busy, when I’m with people, when I’m alone, etc. Food is my friend and my enemy.

I don’t remember what year it was, by I do recall the moment when I said to myself, “This is enough.” I was in a hotel over the winter holidays. I was en route from visiting family in Ohio back to my home in New Mexico. During this particular trip, I had exchanged my reward points from one of those hotel loyalty programs for a free stay in a rather upscale room. I was checking out the fancy bathroom when some impulse prompted me to get on the scale. I don’t know if it was the wonderment over why a hotel would even offer a scale or idle curiosity, but I got on nonetheless.

I did not like the number that I saw on the digital display.

That number staring up at me was just too much. I knew this explained why I got winded climbing a flight of stairs. I knew this explained why I was tired all the time. I knew this explained why I was developing a second chin.

I knew I did not want to be this weight.

After returning to Albuquerque, I started watching what I ate and walking the dog more.  I knew this wasn’t going to be enough. Serendipity stepped in, and I received a postcard advertising the grand opening of a Curves in my neighborhood. I joined a few days later.

That was the first step I needed in getting my health back. Over the next few years I managed to lose close to seventy pounds. I moved back to Ohio, started a new job, got divorced, changed jobs, remarried, gained back and lost a few pounds but, through it all, I always transferred my membership to the local Curves.

I was getting closer to my goal weight and decided I wanted to do something more. Again, fortune stepped in and I received an email about the Breast Cancer 3-Day. This was in 2007, the first year the event was to be held in Cleveland. I signed up and set about training for the 60-mile walk. After completing the event, I felt strong and capable. I knew I had to do it again.

I registered for the 2008 event and set about training. I had lost a bit of motivation since the mornings were still cold and dark. I was also feeling queasy most mornings. I figured that I must have eaten something off or wasn’t drinking enough water. I wasn’t too worried about intense training as yet. I was still fit from the previous summer’s event and at my lowest weight since high school.

One morning, I threw up while walking the dog.

After a trip to the local drug store, I used my purchase in the pre-dawn hours to diagnose the cause for my tummy troubles.

The little stick told me I was pregnant.

So, I was the best shape of my life when I got pregnant. I continued to walk and to go to Curves late into my pregnancy. I didn’t, however, keep training for the 3-Day since walking 60 miles, camping for two nights in a tent and having limited access to only portable restrooms while seven months pregnant did not sound like fun.

Nausea was my constant companion during all nine months that I carried Philip. I found myself eating all the time. Despite the exercise, I gained back many of the pounds that I had worked so hard to lose.

After Philip was born, I obviously dropped a few pounds. I was certain that the rest of the weight would come melting off when I began to breastfeed. At least, that was what was promised in those “what to expect” books and articles. As things turned out, my milk never came in. I was not going to lose weight that way.

Before the baby was born, we had decided that Peter would quit work to stay at home. Since we were living off just my income, I gave up my Curves membership. I assumed that, once my child got on a sleep schedule, I would be able to work in other, free fitness activities. Again, the “what to expect” books had not prepared me for life with first a baby and then a toddler with such an erratic sleep schedule.

Despite these challenges, I had been keeping relatively fit by walking the dog twice a day. I didn’t get back to my pre-pregnancy weight, but things got better once I started pushing Philip around town in a stroller.

Last summer, after I started my new job and we moved, bad habits started to creep back into my life. I was spending more time in the car commuting to work. I was eating more fast food, walking a little less. When I began walking with Philip rather than pushing him in a stroller, my walking regime decreased in its intensity and efficacy.  Over the winter, my clothes got tighter. I started getting winded when I took the stairs. Hell, I was getting winded walking in a straight line. One weekend about a month ago, I got on the scale at my parents’ house.

I did not like the number I saw on the display.

As much as I don’t like how I look when I’m this weight, what I really hate is how I feel: blah. Plus, I know I’m putting myself at risk of developing Type 2 Diabetes. It runs in my family.

More importantly, I don’t like the message I’m sending to Philip. Sure, he may not notice and be embarrassed by my weight now, but he will notice if I’m too tired and fat to play with him.  As I read this blog post at The Oxygen Mask Project, I found myself nodding in recognition and agreement.

Enough IS enough.

Peter kindly got the stroller out of storage a few weeks ago. I cleaned off the cobwebs, and Peter inflated the tires. Now, as part of our new morning routine, I put Philip in the stroller and push him while walking the dog. Not only will this help me get back in shape, it’s turning into an excellent way to wake up Philip in the morning. I’ve written about sleep issues before. There is this vicious cycle in which Philip sleeps in, takes a late nap and then stays up late which makes him want to sleep in, take a late nap, etc. Without the structure of the school day, it has become more of a struggle to make sure Philip wakes up and stays awake.

During the school year, Philip was never awake early enough to eat breakfast.  He takes after his dad like that: they both eat like birds and have the waists to match. In preschool, skipping breakfast isn’t ideal, but it’s not the end of the world. But once Philip starts full-day school, there won’t be morning snack and he won’t be going home for an early lunch.  I need to get him in the breakfast-eating habit now.  So, while I’m getting in a workout, Philip can munch on cereal and check out the sights.

I’m so not ready for this

Philip isn’t always awake when I put him in the stroller. This is one reason why I don’t try to make him walk on his own. I tried that, but ending up carrying a still-sleepy toddler. Sure, THAT would be an excellent workout, but it’s hard to pick up dog poop while carrying thirty-plus pounds of crying child. In the stroller, Philip can ease into wakefulness while the dog and I can walk at a brisk pace. Well, a brisk pace until the dog stops to sniff something. But you get the point.

Okay, I’m awake now

I’m hoping by the end of summer that my pants are fitting a little better and that I’m not out of breath from a flight of stairs. I need to be in the best shape of my life now, to take care of myself, my son and my family.

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I’m a working mom with a stay at home husband living in the midwest. I started blogging about my son on his first birthday, intending it as an electronic photo album. Our now 3 1/2 year old son was diagnosed with Autism Spectrum Disorder earlier this year. The blog still serves its original purpose while also helping me think, learn and adapt to life with autism.

This post was originally published HERE and used with permission.

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A Gentle Beginning

by Lanie, September Road

Oxygen Mask Project

 

Asking me how I came to this particular website, is useless. I can’t remember. I can barely remember to brush my own teeth. But, ask me the stats on the rate of autism and I can spout them out as if I was the original researcher. Ask me how to spell “Orton-Gillingham” and I can do it in my sleep. Ask me a thousand things having to do with my children or husband and I can have perfect recall instantly.

Ask me anything about myself…..crickets……silence……sigh.

I have let myself go, I have sunk into a depression and, and, and…..I just don’t know.

I do know one thing. I am ready. I am ready to reclaim me. Starting now, today, this blasted hot summer. I may be slow, sloppy and unorganized but I am going to start. I am ready to put the Oxygen Mask on myself first. (wow, I didn’t get struck down by lightening…whew…wasn’t really sure when I was typing that sentence).

Again, I don’t know how I came to their website. I can’t remember. I just know that it has lived at the top of my favorites bar ever since I did discover it. I have enjoyed reading the other women’s accounts. I see myself in almost every single one. I see parts of me, parts of my marriage, parts of my kiddos, parts of relationships past and present. I like that. It’s comforting. To be a voyeur to someone else’s reawakening and empowerment. It’s nice to know that they are there, just a click away, doing their own lives and trying their hardest with struggles similar to mine.

But its not enough anymore. The satisfaction from watching others begin and succeeding at their attempts to reclaim their individual selves, has waned. There is nowhere else to go. There is nothing left, no excuses, no time, no waiting, no hesitating, no fear. G-d isn’t that a laugh….no fear left. I can’t possibly be afraid of any attempt because there is nowhere else to go. There is no more bottom. I am there.

All that’s left is to go up. To begin. Again. To put the oxygen mask on myself…..finally…….and breathe. Gently.

I must go gently at first. I need to remember that, in this state, I am fragile. I need to try to take care of myself and go gently. Gently, slowly, but in motion. I have never consciously treated myself gently.

I must go back to those brave women who have already begun their journey’s. Back to their words, to remind myself to go gently. To begin. To breathe. For me this time. Just for me (it still doesn’t come naturally to me to type those words).

Perhaps in time.

For now, it’s enough to make the attempt. To begin.

Thank you for my beginning Oxygen Mask Project

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I am a stay at home mom of 2 special needs boys. A few of our challenges are autism, apraxia, visual/audio processing, ODD, OCD, ADHD, Dyslexia, dysgraphia, anxiety, you get the picture. My husband and I are dedicated to each other and our kiddos, but that doesn’t mean we don’t feel the pressures. Recently I have begun writing online at September Road as a way to communicate to a larger audience on the products, therapists and frustrations that surround us. The tag line for September Road is traveling the special needs road with our faith, family, & friends.

This post was originally published HERE and used with permission.

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