Tag Archives: change

Air, Autism and Advocacy

by Shannon, Well Served Tennis Academy

Today someone said to me, “You should take a break from all of your advocacy work. You’re doing too much.”

But I can’t. This is the air that I breathe.

I’ve got a lot going on.  Most of it is self imposed.  I’m an intuitive person and when my son was diagnosed with autism ten years ago, one of my first realizations was that very few people who could help him get services, an appropriate education and medical care actually KNEW what autism was beyond just the word.  I’m talking politicians and policy makers.  The people who could shape the laws that govern my son’s ability to access ALL the wonderful things this country has to offer, knew…almost…nothing.

So with a healthy dose of terror (which incidentally never goes away) and having the faintest of clues as to how to begin, I began. And one step led to another and before I knew it, I was speaking to state representatives and state senators, Congressmen and Senators, advisors and policy makers.  Before I knew it, I was working with other parents to CHANGE the lives of our children.

And I gulped in the air. Again and again.

It is the air that allows me to be an integral part of the solution. It is the air that allows me to be part of making the world my children live in, the best world it can be for them.  It is the air that I need to help policy makers remember that there are REAL people behind the word autism or autistic. It is the air behind the voice I use to speak for my children. It is my oxygen mask. It is not everyone’s, but it is mine.

Think you can’t do this?  You can.

I am a life long tennis player and the great Arthur Ashe is among my favorite tennis champions.  He said this,”Start where you are. Use what you have. Do what you can.”  Start with a call to your legislator. Ask him or her to meet you for coffee. Then breathe.

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Shannon Knall is a founding member of the Hartford, Connecticut chapter of Autism Speaks and the Inaugural Walk Chair.  As a volunteer, she is the State Policy Chair for Autism Speaks in Connecticut.  Shannon is also the Executive Director and Founder of Well Served Tennis Academy, a summer camp that provides children with autism in grades 4-8 an opportunity to learn tennis in a social environment

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Trying To Avoid Burnout as Autism Parents – Reflections on Doing Better

by Tim, Both Hands and a Flashlight

I think I can handle most anything if I get some minimum, viable amount of sleep. I’m not sure what ‘minimum’ or ‘viable’ means in actual numbers, but I know it’s more than I’m getting now. Regardless, when you have a child who either regularly gets up early or gets up in the middle of the night and stays up, sleep is very hard to come by. Autism parenting and sleep are rarely friends.

So recently I once again found myself falling down into the hole of burnout. The accumulation of tiredness got bad. It wasn’t yet as bad as The Great Burnout, but it was getting there rapidly. We held on until we got a sleep-cation last week, courtesy of Mary’s parents. They kept the kids for about a week, and we mostly slept – a lot.

Even after a week of rest, we still felt tired. We got a few things done around the house, but not as much as we had hoped. But we did refuel the sleep tanks enough to hopefully last a while. We were certainly thankful to shut down for a few days.

At the end of the week, I was left with one of those simple, visceral statements of desperate faith.

There has to be a better way.

After our J-Man woke up a couple of nights ago at 3AM, it became abundantly clear that we can’t keep going through this cycle.

J’s sleep will – hopefully – settle down a bit once he gets acclimated to being at home again after his time away, but it’s not like rest is going to magically become part of our lives. We can try to schedule a more lengthy respite two or three times a year, but binge sleeping after a long period of deprivation really isn’t the most healthy approach.

I refuse to accept that we are doomed to this pattern, though. I really do believe there has to be a better way.

There is so much at stake. We have to find a way to become as strong and healthy as we can be in order to have the energy and focus we need to address some absolutely critical needs.

We all have the obvious personal concerns such as getting our children through the day, helping them grow and learn, managing therapies and medications, dealing with school, IEPs, and all those potential issues, fighting with our local, county, and state government agencies to get services, and so much more, on top of one or both parents needing to work in order to have a chance to make ends meet. Oh, and there’s that little thing about our own personal health and mental survival, too.

But there’s a whole lot more we want to do but often lack the energy for. Government entities are regularly trying to change the laws and rules, rarely in a way that helps our children. Policies change or become even more incomprehensible. Budgets get slashed. Our children are discriminated against in places both public and private. Many of us want to write, blog, and advocate. We want to raise awareness about our children’s challenges and make the world a better and more accessible place for them. We want to teach, learn, and grow as parents and adults.

In other words, we want to do more than just survive. We want to thrive, grow, and make the world a better place for our children and all children. We want to fight back against anyone who stands in our children’s way.

Here’s a blinding flash of the obvious. This is hard.

Here’s what I would like to become. I would like to become stronger than the challenges are hard.

We talk about autism being hard and all that, and there is some truth to this. Autism obviously does create a variety of challenges for those who are autistic and those of us who care about and for them. But when I say, “This is hard,” there is no blame to assign either to autism or autistic people here.

Autism has no will of its own. It simply is. And it’s certainly not my son’s fault that I feel challenged by so many things. I am the puzzled one, not him. And I think the sooner I completely claim that as my own issue, the better off I’ll be.

Beyond everything we want to do for our own children and families, most of us want something else, too. We want to create something that reaches beyond the four walls of our home. We want to leave our mark on the world, to leave a positive legacy that changes the world for the better and that will endure after we’re gone.

At least for me, this is where a part of me always feels more than a little empty. Maybe it is one of the hidden causes of burnout, at least for me. We want to do more than just get through the day. We dream of making a difference in the world, and when we can’t, we feel the loss of something essential in our lives.

But this is where I am trying to show grace to myself. Perhaps I’m not in a place to achieve the kinds of things I want to right now, but that doesn’t mean I will never be able to. With time and effort, I’ll learn and grow and hopefully get more of my crap together. The most important thing is to commit to the journey of getting there. And I hope you’ll do the same.

I know I’m getting better at this as time goes on. I am learning new things every day. I am getting wiser. I am figuring myself out. I am growing into my own skin. I am slowly but surely becoming the kind of parent I want to be. And I have two really good little teachers running around the house to help me.

I am often not the parent I want to be, and I am trying to accept this as just where I am right now. I am often not as present to my kids as I wish I was. I’m sometimes not a particularly good husband or friend, either. The dissonance between what I want to be as a parent and as a person and where I am now grates on me like an orchestra of out-of-tune instruments.

All I can do is learn from today and try to do a little better tomorrow. In the midst of everything going on, it’s hard to realize that this alone is quite significant. That commitment is absolutely essential, along with the belief that this – that I – will somehow be enough.

“An open letter about why I believe in our children, our autism journey, and you.’ Click here for Tim’s free book.

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Tim Tucker writes and manages Both Hands and a Flashlight, his family’s online chronicles of parenting, autism, and the pursuit of being awesome. He has been blogging about autism parenting since his son, Jonas, was diagnosed in 2008.

He is also the author of I Am An Autism Parent, available October 2012. Tim is making I Am An Autism Parent available as a free e-book to help parents receiving an autism diagnosis for their child adjust to the challenges of autism parenting and to inspire all autism parents to embrace their own strength, skills, and identity. An excerpt of the book, called The Autism Parents Vow, is currently available as a free download on the I Am An Autism Parent web site.

Tim lives in Raleigh, North Carolina with his lovely and winsome wife, Mary, and their two amazing children, Jonas and Eli. He is an avid runner who has completed two marathons, both in Jonas’s honor on the anniversary of his diagnosis.

You can find him on Facebook on both the I Am An Autism Parent and Both Hands and a Flashlight pages as well as on Twitter as @autismparents.

This post was originally published HERE and used with permission.

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Be Strong – But Not Always

by Jen, Be Strong

In July I went on hiatus from writing because my 44 year old sister was diagnosed with pancreatic cancer.  I was broken hearted and determined to be there for her as much as possible.  On September 10, 2012 my sister died.  I am still broken hearted….and yet…I am not broken.

With my sister’s diagnosis came a lot of anxiety for me.  This is not the place nor is it the time  (not ready to go there yet) for me to share all of that with you.  However, since the magical date I blogged about -March 11, 2012- I had gone down 30 lbs. and now, I am exactly half way between that and my starting weight.  Half way feels magical, too.  It is the moment I say to myself,  “Did I really change or am I the same person who won’t believe how fat I am until my belly sits on my knees?”  If you remember previous posts you know I am not afraid to call out my weight of 223 lbs because I carry that weight into the world everyday.  I carry this friggin amazing body into the world everyday!!!  It is a body that has not failed me yet.  How honored and blessed that I am.  Perhaps now is a good time to mention that exactly one day after weighing in at 219, I ran a half marathon in 3 hours and 9 minutes!  They didn’t ask my weight. They didn’t care my weight. If I could run I was in!!!  And I ran!!!

So here I am today 15 pounds heavier than I was in the last post in July.  And yet, I am wiser, stronger, more gentle and more loving.  Win-Win.  I am ready to get back to the healthier version of me.  So,  what made me gain the 15 pounds?  Easy.  I started drinking alcohol again and I stopped exercising faithfully.  I exercised here and there.   2 things.  That is it.  Nothing more.  There are solid reasons for both those things happening. I am not here to make excuses.  I am not here to ease any guilt because I don’t have any related to those two choices.  I am not even here to say that I slipped.  I didn’t.  Life happened as it does.  It came at me hard and I made different choices than I had been making.  Today, I look at those choices and say….”yeah, they worked for right then but those aren’t choice I want to hang onto long-term.”

And so I have stopped the alcohol for now.  I have started the spinning and the running again.  My goal is 3 miles 2 x a week and 5 miles once a week.  I will probably have to do a lot of that on the treadmill and although I don’t love that idea, the idea of making the gym work for me is great.  Spinning will be 2 x a week.  I know I will have to fight the not wanting to even harder with the days getting darker much earlier.  Winter is a time where I have to watch myself like a hawk or I will fall into a place where I want to wear sweats, read a book, and drink hot stuff as soon as I get home!

The good news is that I like the healthier me.  I like that I don’t shy away from things that are hard.  I had never pushed my body beyond comfort zone and it is such a feeling of accomplishment to do that!  I keep thinking about and loving the  idea that the more weight I take off of this body the faster I will run without having to do ANYTHING else.

Life will keep happening to us. Sometimes it will be gentle, but often it will hit hard!!!  It is okay if you get the wind knocked out of you.  Take time to catch your breath. When you are ready jump up and fight back!  Be Strong!  Be Gentle with you and those you meet along the way!

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I am Jen and I am a 40 year old mom, wife, and teacher among other things. I write blog posts because it is my passion, my therapy and, I hope along the way it helps others. My blog posts tend toward being about staying strong in the face of grief, anger, general hard times ss well as keeping yourself healthy so that you can continue to be there for the people who matter in your life. I hope you find some golden nuggets for yourself in my writing.

This post was originally published HERE and used with permission.

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It’s About The Sanity

by Patty, Pancakes Gone Awry

I sat on the park bench crying inconsolably. I was too upset to go home; I didn’t feel like explaining myself to Bil or the kids, so I just sat there sobbing, so angry at Danny’s teachers.

I had just had a terribly frustrating meeting with them about how he “couldn’t focus.” The teachers gave no suggestions, only complaints. It was obvious they were giving up on him for the year. The special ed teacher kept talking about how much better third grade would be. It was only March, but they were already giving up on my kid.

I felt helpless and sad and hopeless, as I sat on that bench staring at the houses that lined the street surrounding the park. Trying fruitlessly to come up with solutions, I wracked my brain. But there was nothing. I had nothing at all. I was so drained and confused and angry. And I didn’t know what to do to feel better.

Then, I had a thought. I would go to Zumba class. That would buy me some time before I had to rehash the meeting with Bil. I just wanted to be alone, and Zumba seemed like a good place for that. Though crowded, it’s dark and noisy–no need to talk to, or even look at, anyone.

So, I composed myself and headed to the gym.

As soon the bass tones of the music filled the room, I felt relief. As I danced, I was actually overcome with a peace and an overflow of emotion. I started to get choked up, but this time it wasn’t out of hopelessness, it was blessed peace and release. I knew I still had to figure out how to help Danny, but at that moment, I could revel in the movement and how good it felt. As I cha-cha’d and shimmied, I began to feel that life was manageable again. I would figure it out.

By the time the workout was over, I felt like a new woman.

I have been working out pretty regularly, since my teens, in an attempt to manage my burgeoning weight. Aerobics videos, walking, biking all to reduce the size of my hips, thighs and stomach. I knew that if I ever wanted to look like Kate Winslet, I should be exercising everyday.

It hasn’t been until recent years that I realized exercise was about much more than my appearance and weight.

It is the one thing standing between me and depression.

I first realized this when I was pregnant with Tommy. My first trimester hit me hard emotionally. I was already overwhelmed with my parenting duties and the hormonal onslaught only made me more scared, lonely and weepy. I couldn’t make it through the day without crying. And these crying jags were not just the kind you have from watching a sappy Hallmark commercial. Oh, no, these episodes included me feeling like things were completely dismal, that I was the worst mother in the world and I would never be able to handle another child.

I had almost decided to talk to my doctor about medication when I popped in an exercise video. To my surprise, I starting smiling almost as soon as the warm-up was done, and I didn’t cry once the rest of the day. After that, I knew that if I were going to make it through the pregnancy sanity intact, working out had to be a priority.

That episode on the park bench last year reminded me that I have to make time for exercise. Though I rarely look forward to the actual work out, I always feel better afterwards. More telling is when I take a break for a week. All of a sudden, my emotions are more difficult to control. My stress levels raise exponentially, and I don’t sleep as well.

So, I try to make it a priority to work out, no matter what is happening. I sometimes feel guilty about the time I am taking away from my family, but really we all benefit from it.

I’ll never have Kate Winslet’s body, but some things are more important than looks.

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The mother of three kids, Patty’s eight-year-old son and 6-year-old daughter have both been diagnosed with Sensory Processing Disorder. Her oldest son also has high functioning autism. Though her two-year-old son has no diagnosis as of yet, she’s pretty certain he has SPD, as well. She blogs at Pancakes Gone Awry and has contributed to OUR Journey THRU Autism. Her writing has been published in SI Focus Magazine and online at The Thinking Person’s Guide to Autism and Mamapedia. She recently started a LEGO social skills group for kids on the spectrum for those with social/developmental delays in her area.

This post was originally published HERE and was used with her permission.

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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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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.

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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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Just Like That

by Becky, Building On Joy

Love this! Motivating!
And so I decided to start exercising & that led to starting a running program.  Well, a walk/jog program.  You can read more about how I got started.  About 3 weeks ago, I didn’t plan to exercise. I didn’t want to exercise. I really hated the idea, although I knew I needed it.

Today I did my first full Couch to 5K workout outside, and it was tough.  But I completed the WHOLE program for today.  I’m pretty sure that my jogging pace may actually be slower than my walking pace (ok, not really but, well, maybe!).  The way the Couch to 5K program is structured is that for the first week you walk 5 minutes, then alternate 60 seconds of jogging and 90 seconds of walking.  You do the jog-then-walk combination 8 times.  I was ready to quit after 2 times.  I was positive that I’d not get through the third jog, let alone move on to the third walk segment.  But I watched my time, and when it was time to jog, I jogged.  All 8 times.  And then I walked, all 8 times.

It was hard.  I was sweaty.  Yuck.  I came home and plopped onto the couch and told my husband that I was pretty sure I was going to die.  But of course I didn’t, or you wouldn’t be reading this post! ;-)

The picture above was going around Facebook this morning and it captured – perfectly – why I started exercising, and why I didn’t quit this morning.

I think we – ok, I’ll speak for myself here, not all of you – I think I live so much of life “because it’s the way I’ve always done it” and that’s just not cutting it anymore.  That’s “mindless living” in my opinion.  There’s nothing intentional in that kind of living.  I know I wasn’t aiming to be unintentional in my living – I probably even decided that I was being “efficient” by just doing the same thing I’ve always done.

But the need to be intentional is currently a big key in my life.  And so it is in this aspect of my life as well, it turns out (imagine that!).  It’s now nearly noon, and I’ve not accomplished as much as I could because I took time out to exercise.  However, I think I’ve accomplished one of THE most important things I needed to do today, because I took time out to exercise.

Are there things in your life that you’re looking to change?  It’s not easy – I’m not here to tell you that it is.  But making intentional choices is the place to start.  Look at what you’re wanting to change.  Decide what you need to do to make that change, and just do it.  Don’t listen to the doubting or the parts of you that say, “No way!”  One step at a time.  One choice at a time.  You CAN do it.

There are so many people out there who will tell you that you can't. What you've got to do is turn around and say "watch me".

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Becky lives near Philadelphia, PA. She is married to Tim and they are parents to 3 children – two boys and one girl.  Her second son, “Picasso”, has Sensory Processing Disorder along with an Asperger Syndrome diagnosis. Picasso loves making art using various mediums and sometimes chooses to sneak Sharpies for use on surfaces in the home (read: bathroom cabinet, doors, walls, lightswitches, etc.).  She blogs about special needs, homeschooling, and family life at www.paintingwithpicasso.blogspot.com .  Becky also enjoys coffee, reading, music, knitting, and is working hard at taking better care of herself, in order to care better for her family!  Check out her new blog Building On Joy.

This post was originally published HERE and used with permission.

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