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!

**********

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

**********

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

**********

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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Checked Baggage

by SuperDebby, Everybody’s Boy

At some point in recent history I decided to take my life back.

I can’t pinpoint when it was.  It wasn’t some epiphanial moment that I will regale young whippersnappers with in my old age.  In fact, it wasn’t a moment at all.  It was the culmination of thousands of moments, and born out of an innate desire for self-preservation.  What’s more is that I’m not “all better.”   I just am.

You have to understand that for some time now I have teetered on the precipice of  shear disaster.

It doesn’t do anyone any good for me to recount publicly the transgressions I’ve encountered in my 34 years.  I imagine I have lived a lot more than some, yet a lot less than others.  What’s important is my reality and how I’ve coped.  Which, depending on where you would rate such encountered transgressions on the “horrible, terrible” scale, is either amazingly horrible or absolutely terrible.   I’d like to believe that experience brought me growth for the most part, with a side of baggage.

Baggage like an eating disorder, an anxiety disorder, post traumatic stress disorder…and possibly some other “disorders” remaining to be unearthed.

Experience also brought me to understand my fragility, and appreciate my strengths.

It’s true that I jump every time I hear an unexpected loud noise.  Or that after 8 years my husband cannot approach me from behind without warning (and even then I still scream bloody murder at least 70 percent of the time).   Yes, I have foods that are “safe” and foods that are “forbidden”, even though the scale said I passed “recovery” about 60 pounds ago.  I chronically apologize for my very existence, always assume that I am wrong in any situation, and have spent much of my life harming myself physically and emotionally.  My anxiety keeps me awake a night, worrying about how I might have failed any number of people, and what egregious acts I might commit in the future.  I need medication to function in this world. Sometimes I cannot find the emotional energy to keep a dinner date with an old friend or put away the laundry that my husband washed and folded and instead find myself taking long afternoon naps seeking respite in a few hours without worry.  Even then, the memories, the anxiety, the fear sneak into my dreams forcing me to reconcile whatever it might be that I’ve fought so hard to cleanly compartmentalize.

It is incredibly lonely and miserable when your mind and body revolt against you.  Especially when you can’t reconcile a purpose.  I believe, at least in part, that I must experience these things because otherwise how could I possibly understand and champion my son?

No one is without gifts, however.  In fact, our weaknesses are often the very same things that help us towards greatness.

This is the realization that I had, when I decided to take my life back.

Without those encountered transgressions I doubt I would hold this passion to save my little piece of the world.

I don’t think I’d have the empathy to embrace another’s story without judgement, the patience to raise a child with Autism in a nurturing environment, the resilience to take continuous hard knocks and keep going, or the resourcefulness to make a path for myself and others.

So there it is, I guess.  There is my non-epiphany.  There is no black and white.  There is no sick or well.  There is only me taking responsibility and control for my very own journey.

There is beauty in dysfunction.  There is dysfunction in beauty.

Whatever it is today or turns out to be;  it is mine.

I took it back.

**********

Debby is a freelance writer living with her husband and only child (Everybody’s Boy) in North Carolina.  She is active in her community as an advocate for individuals who have Autism or who are otherwise “differently-abled.”  Debby works in the nonprofit sector, providing supports to maximize inclusion for individuals and their family members with developmental disabilities.  She aspires to practice the principles of yoga, but still finds it impossible to stifle a giggle when confronted with the term “downward facing dog”.  Debby is fluent in English, Frenglish, Spanglish and International Sarcasm and her special talents include the ability to eat practically any food with chopsticks, talking her way out of overdraft charges and telling pretentious stories about when she used to live “abroad”.

This post was originally published HERE and used with permission.

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Stress and The Special Needs Mama

by Momma Kate, Created BEAUTIFULLY Special

Have you ever had one of those moments where your mouth falls open and you have to pick your jaw up off the floor? I had that very thing happen today. While I was having a rare ‘spa moment’…let me clarify…I was at the chiropractor to have my neck put back in to place, my doctor, who I’ve seen for 15 years, says to me, ‘You have stress in your life, don’t you?’. I replied, ‘Maybe a little…..’. He was pulling my chain. He knows what my life as a special needs parent consists of. Apparently, the areas in my body that were showing the most signs of needing attention were my neck, shoulders and head. Cue the tension headache. That leads me to address this area of ‘stress’ in our lives. Every single person has it. Let me make myself loud and clear. I know that the entire human race, special needs parent or typical parent, carries quite a load. Here, I want to focus on us special needs parents. To cover all the areas, lets break it down into sections.
First stop, Physical Stress. There are so many different ways that we have to care for our kiddos. Everything from lifting, changing diapers, dressing, bathing, feedings, giving meds, fighting sensory meltdowns, learning new medical treatments, daily therapy regimens, extra laundry, countless appointments, hospital stays, the average 2-4 hours of sleep every night for years on end….and the list goes on. Our bodies show the wear and tear of this schedule being repeated day in and day out. It’s inevitable! However, the duties that incur stress don’t stop here.

Let’s move on to the Mental Stress. Please tell me I am not the only one whose brain NEVER stops. The thoughts at 1am…. ‘I need to call Neurology in the morning to make sure that the Physical Medicine doc knows what the Developmental Pediatrician said yesterday.’, ‘I need to get that script moving for the Occupational Therapy.’, ‘Oh dear God, another surgery? Guess I should start taking care of….’. The ‘To Do’ list go on and on and on. We live and breathe the medical terms, diagnosis, meds, reactions, new docs, etc. We do things we don’t even know we do! We are subconsciously watching every single move, breath, swallow, and diaper, because at any given moment, we will be thrown for another loop, be in the Emergency Room, and the doctor will want to know the minute by minute detail of the last 24 hours. That includes what our child does while sleeping…..

How about the Emotional Stress? Yes, I will admit, I do cry in the shower. I try very hard to contain it there, because I don’t want Boo to think I’m upset about her. Sometimes though, Momma needs a good cry. Let’s face it, we are talking about life-threatening situations not just every now and then, but daily. Whether it’s a serious medical crisis or a sensory meltdown that propels your child to run from you in the parking lot, your emotions and body are always on guard. Add in what other people think about what you are doing…. you might as well call it a day!

Anyone have Marital Stress? First off, let me say that I absolutely adore my husband. I married the man because I not only love him, but I like the person he is. Yet, I am so drained by the time I get alone with him, that I come across grumpy and short because the only thing running through my mind is, ‘Get me to my pillow so I can get just a little sleep’. In our 6 years of being parents, we have been alone maybe 4 nights. Usually, once we are completely alone, we zonk out! We are both so drained from the day in and day out of special needs caregiving, that we snuggle down in and saw logs! There are some areas that we try to do daily, weekly, monthly…  We try to laugh a little and tell each other, ‘I Love You’ every day. To know that even in the midst of this craziness, we are still important to the other. At night, when all is quiet… at 10p or 12a, we sit on the couch and snuggle to a comedic tv show. Something that takes our brains to a lighter level. We are working very hard at trying to get one meal a month, just the 2 of us. No kids, just the 2 of us on a ummmm….what is that? A DATE! Yes! Sorry, I still get butterflies.
If you are like me, you also have other children who need a Momma too! They are just as important and need to be held, listened to, and encouraged. When the heck to you have time to clean, do laundry, grocery shop, weed the flower beds……my time is usually between 9:30p and 2a. When I want to be with my hubby or sleeping. See, you are not alone!!!!! It is a seemingly impossible situation that we live in!

I want to take a second to chat with those of you who are on the outside looking in. Maybe you are a grandparent or a friend to someone who has a special little kiddo. I hear often that people don’t know how to help or what to do. Listen to me loud and clear. It’s little things that mean the world to us. Drop off a meal, but be sure to know if there are adjusted diets. Offer to come and clean the toilet, mop the floor, make the beds, fold some laundry, any little quick job that helps us ‘feel’ better. Give an hour of your time for whatever we may need. Send a card of encouragement. Call and see if there are some grocery items that need picked up. Run thru Starbucks and get Momma her favorite drink…odds are, we haven’t had one in ages. Realize that we may not be able to talk on the phone due to our daily routine, but we thrive on adult conversations. Stop by, and just chat about something besides medical terms. We are still people on the inside that are getting buried by this life we live. In stopping by, please don’t judge our house, appearance, or expect us to wait on you hand and foot. Our world never stops, so those around us need to be willing to hop on the ‘treadmill’ and walk a mile in our shoes. Most of us have no life outside of Special Needs. That is the truth. We are not ignoring you. We are simply immersed into giving our child(ren) the most normal life possible. Things that  the world takes for granted. Please, be understanding and for a moment, learn what it’s like and put yourself in our position. We need you like you need us.
Mommas, my doctor reminded me today, what we have all heard a million times. You can’t give to those around you unless you have given to yourself. He encouraged me to take 5 minutes a day to recharge. Close your eyes and breathe. Read a chapter in a book. Pray. Paint your nails. Listen to a song. You have read those articles that talk about our stress levels being comparable to combat soldiers, right? Shaving somewhere between 5-15 years off of our life expectancy. You are worth this. Your family needs you. Start right now. Give yourself some air and remember, that you have been Created BEAUTIFULLY Special.

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I am an almost 30 year old SAHM with 3 kiddos and am married to my prince charming. I quickly learned that life would not go according as planned when our first child was born with Cerebral Palsy. Now, at the age of 6, our little girl has almost 20 separate diagnosis and is our miracle baby. The doctors didn’t expect her to live past her first birthday, but she has proven them all wrong. ‘Created BEAUTIFULLY Special‘ was born in my heart to show what the special needs journey is really about and to showcase individual kiddos beating the odds.

This post was originally published HERE and used with permission.

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Taking Care of Me

by tenaciouscee

It’s been a really long time since I’ve felt like writing. There has been so much going on, too many emotions, ridiculous amounts of stress that I finally realized I’ve been completely neglectful when it comes to taking care of myself.
Today, I decided that needed to change. Immediately.

The summer has been challenging to say the least. Between my son’s sensory dysregulation, my daughter graduating grade school, and miserable back to back heat waves, my whole family has been feeling the pressure.

This morning after returning home from camp drop off I made a conscious decision to abort any productive plans I had in lieu of spending quality time with myself. I deserved it, I thought.

It started with some puppy love. Just sitting on the sofa and snuggling the two furry, loyal critters in this house who don’t talk back.

Then I decided to make breakfast. Not an eatoverthesinkoutofthepoticookedwith kind of breakfast, but a real meal eaten on real china at the dining table. You know, like a civilized human being.

Something remarkable happened… I enjoyed a meal in peace. I turned on some music before I sat down and spent Ten! Whole! Minutes! to eat my food while it was still hot. I even put the fork down between bites! I know that’s something that I haven’t done in years. I’m always rushing through my meal in a desperate attempt to finish it before the next kid related crisis occurs. It was a wonderful experience. I actually tasted what I was eating for the first time in ages.

When I had finished my breakfast I not only felt like I had nourished my body, but my soul as well.

In the tiny amount of time I spent taking care of me, I discovered that I don’t always have to feel like a cranky, stressed out mom. I deserve to feel important in my own life. I needed this time to just…breathe.

When it was time to pick my children up from camp, I felt like I had taken a mini vacation. I actually felt…calm. The frazzled woman at drop off had been replaced by a happy and rejuvenated mama.

We ALL deserve a little “me” time. Find just ten minutes a week if that’s all you can spare and take care of YOU. Its so easy to forget yourself in the daily shuffle of a busy life but if mama is broken, so is every single thing around her.

What are you waiting for? Go find your ten minutes and take care of YOU!

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This post was originally published HERE and used with permission.

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Courage and Faith

by DQ, So Far

It takes courage and faith to put on the oxygen mask.

Courage to choose myself first.

And faith that it is OK to do so, OK to choose me, and that it is OK to live life for myself, too.

Some wonderful writers have already shared the impetus behind making the change – the awesome Alysia has taken her inspiration to a higher level – by starting a project to share, encourage and support other parents who are feeling the same ways about life (often, but not exclusively, with autism).

How lost a person can feel.

I felt very lost for quite a while.  In the later months of 2007, I dived into everything about autism.  I submerged myself, I became what my son needed and continues to need – an advocate, protector, teacher, therapist as well as mum.  I had to be informed, I had to learn, I had to understand what the best choices for him were.

That is where the courage and faith comes in.  I had to be brave to step up – yes, it was automatic but, damn, it took courage, because I felt like I was not enough – not patient enough, not strong enough,  to take it all on.

At the time of diagnosis, just over 4 and a half years ago, I felt like I was drowning in overload.  It seemed too much, too scary, too unknown, too big a mountain to climb – that I didn’t have what it took to be what my son needed.  But I did it anyway – because of love, because I just had to.  Regardless of fear and self doubt, I had to.

Looking back, how I did that was interesting.

With hindsight I know exactly what happened.

In the moment of hearing the words ‘your son has autism’, the wave of grief crashed into me, I reeled and tried to hold on to what I knew – and it seemed like suddenly I didn’t know a thing – except that I loved my son with every fibre of my being and that I would fix him.  I shoved everything I had imagined for myself and my family aside – the expectation of return to work, of adventures, of travel, all the idealized imaginings of family – and put my son first – above everyone.  I needed to do that for him.  The compassion that came with his diagnosis was in the truest meaning of the word- awesome.  I felt a physical shift in my heart, the compassion for my son multiplied to what felt like infinity.  It was glorious and a little scary.  What wouldn’t I do for him?

That is a very interesting question.  At first, I did everything.  I turned myself inside out.  To the point where I felt like one of his limbs.   It seemed that he needed me for everything.  Our connection and co-dependence was powerful.  It dominated every aspect of our family life.  I became a unit with my son.  It was a very unhealthy existence for us both.

Now, I am working with him on his independence.  Just the other day, I watched as he went to the fridge and got himself a glass of orange juice.  He even remembered to put the lid back on it, and put it back in the fridge after he poured his glass.  Simple yet important. And a little bit magical, to me.  I am now in awe of him in a totally different way.

In the process of doing everything I could think of for my son, of turning myself inside out, of putting my needs constantly behind his, I got lost.

This seems to be a theme that resonates throughout many blog posts I have read recently.  I felt as though I had lost my identity, my sense of self.  I felt that I had lost out, too, on a truckload of ‘might -have- beens’; what my life, my family’s life might be like without autism?

Today, I don’t consider myself lost at all.  I have actively spent the last 12 months working towards many things, including finding myself.  For me, last year was the beginning of my own Oxygen Mask Project.

I consider it a lifelong project.  The kind of person I am, the personality I have, means I am going to have to actively do this work for myself forever.

I took things one step at a time.  I sought the help I needed, and I continue to seek it.  I went after and got two casual jobs.  I love them.  They enrich me and bring the kind of engagement I didn’t even know was missing from my life until I started them.  It is tricky juggling everything. But it is worth it.

I have set my personal compass to my own path, not my son’s.

He needs me, perhaps he always will.  But his own developmental story tells me he is going to be OK in the ways that matter most.

I have also learned so much from autism.  I have a different life than I anticipated, certainly, but I also have many blessings – knowledge, experiences and above all, awesome people in my life because of autism.  I don’t think autism is a blessing, please don’t misunderstand me.  I have learned to work with autism, rather than against it.

By looking after myself on every level – mentally, physically, emotionally and spiritually, I can be around for a long, long time.  The biggest realization I had last year was that this blog is not the best place for my journey.    That is why I have decided to begin a second blog, it is called So Far.  I will continue this blog, especially now that I have a clearer idea of the kinds of things I want to write about for myself, and for our continuing adventures with autism.

So, the story behind my Oxygen Mask Moment is quite involved.   I am going to share it as honestly as I feel comfortable with over at my other blog.  If you are a fellow traveler on the Oxygen Mask Project, I hope you can join me there.

“Be glad of life because it gives you a chance to love and to work and to play and to look up at the stars.” – Henry Van Dyke

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I am a happily married mum with two sons, Captain Nintendo and Perky.  Perky is 8 years old and has a diagnosis of Autism Spectrum Disorder including Sensory Processing Disorder.  Captain Nintendo is 10 years old and has a diagnosis of Sensory Processing Disorder, including Central Auditory Processing Disorder.  I currently work casually as a museum educator (my first calling) in two cultural institutions in my home city and thoroughly enjoy it.

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Enough Is Enough

by Ilene, My Family’s Experience With Autism

I’ve never been what anyone would consider an athlete.  I’ve never even been what would be considered “in shape”.  I walk faster than I run, and it’s not that I’m a fast walker.  I’ve never been a fan of stairs.  But I’ve always been able to get by.

A couple of weeks ago my husband and I took our 3 kids on a vacation to a resort with my husband’s family.  One of the things that all of my kids were looking forward to was the indoor water park that they had on site.  There were several water slides that EVERYONE was excited to try.  Big Brother is a typical 7 year old and, once he realized that his swimming level wouldn’t stand in his way, he was able to do anything he wanted.  He went up the 4 flights of stairs and down those slides so many times I couldn’t tell you the numbers even if you held a gun to my head.

But Ballerina and Music Man can’t go up there unsupervised.  They are both 5, both Autistic, and really not capable of understanding things like “waiting their turn” when someone isn’t there to hold them back.  Plus, Ballerina isn’t allowed on the slides herself because she’s not 48 inches tall (Music Man MAY be that tall [he's close if not there], but we never stopped to check).  So, every time they wanted to go down one of those 3 slides, they needed someone to go with them.  Dad was uncomfortable with the thought of going down those slides himself, so it fell to me to take them up there.

They had a BLAST!!!!!  They loved going down these slides sitting in a tube going through this dark tunnel.  They liked the echo their screams made (which surprised me to no end) and they couldn’t wait to go down again.

Can you see the problem here?  Their ability to go down the slides, like any other kid, wasn’t an issue.  The issue was ME.  Every time they were going to go down the slide, I had to climb up the 4 flights of stairs.  I had to carry the 2-person tube if we were going down the “pink slide” (which only happened once).  I had to find the energy in my legs to make it up there over and over and over again.

Most times I was able to distract them – tell them to go to the “fort” which happens to have a couple of water slides on it’s own and is something that they can do without my help.  I tried this every time we finished going down a slide, just to give me a break.  But finally, Music Man realized something – if he started going up the stairs, he’d get to go again because I had to go after him and by the time I would catch him, we’d be near the top and I needed the break by going down the slide..  The barrier stopping everyone from getting on the slides wasn’t at the bottom of the stairs, but at the top.  So, as soon as he got off the tube, he immediately started going up the stairs and I had to follow him.  In the 3 hours or so we were at that park, I probably climbed up there at least 20 times.  To say I was EXHAUSTED would be an understatement.

I need to do something.  I need to lose weight, and I need to get into shape.  My kids deserve the opportunity to do the things that everyone else gets to do, even if it means they have to do it with me.  They deserve to go on a water slide and not be limited by my lack of physical energy to get up those stairs.  Because they really did love it there.

We have a Wii.  The original excuse for getting it (which hasn’t happened in the 2.5 years we’ve had it) was to use some of the Fitness games.  Well, that’s going to happen now.  I purchased the game for The Biggest Loser because it claims that it works for all body types, all weights and all abilities.  I’m going to use this every day and try to get into some kind of shape.  I’m going to change the way I eat and work on finding some energy.

Because if I don’t do something, and soon, I won’t be there for my kids.  What greater motivator is there?

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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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Vacation Without Dawson

by Cheairs, Redefining Typical

Photograph taken by my amazing sister Susan Lowe http://www.sflphotography.com

Mae Mae and I are on a two week vacation together. Laughing with friends, my sisters and their kids. The cousins are “putting on shows” and telling “potty jokes”. I am taking long walks and sweet naps. I feel the tension leaving my bones. I can breathe. My husband and Dawson are at home. Dawson can’t do long vacations. If he were here now I would be following him around a rental house as he turned on faucets and climbed in an out of all of the beds. There would be tension. Like the strings on a violin they would be strung tight. If you played the instrument the wrong way there would be a screech that would make you put your hands to your ears and squint your eyes.  If Dawson were here the orchestra would be out of tune.

The notes cannot be rewritten. They are set. I am okay with that. When Mae Mae and I return home we will have our own musical ensemble with Dawson and Dave. We will have different notes and sheet music. There will be moments in our performances that ring so sweetly and those that just sting.

So I miss my husband. I miss my little Dawsonator.

But I am so happy to have this time with just Mae Mae. She needs this time. She needs the sweet music to encircle her, and I need it to carry me. So I am happy.  I am sad. Like any good music you feel it.

So I hear…..the swirl of the creek, the laughter of children, and rain coming down on the roof. Being a part of this music now, in this special place for my vacation, it gives me the strength. When I return home I will be a stronger musician. I will be ready to be a part of my most unique and special jammin group. Our “Typical Band”  starring Dawson, Mae Mae, Dave and me.

And although our music sounds different than the sweet sounds here in this valley where I am now. It is because of this valley that I can hear and rejoice in the music that is my family and I love that.

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Cheairs can be found at Redefining Typical. She writes about her most supportive and gentle spirited husband and their amazing, sweet, and fun-eight year old son Dawson who has autism and their ever moving, energetic, and peace loving six year old typically developing daughter Mae Mae.  She writes about their life: the joy, the sorrow, the triumphs, and everything in the middle. She is forever in the process of Redefining Typical.You can also find Cheairs at her Redefining Typical facebook page.

This post was originally published HERE and used with permission.

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