Tag Archives: remember to breathe

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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A Poet In My Own Mind: Autism

by Annie from Simple. IJustDo.

I enjoy writing.  Always have.  I took a creative writing course in college and had a great deal of fun, especially with poetry.  Fun does not necessarily translate into good, so I apologize in advance.  I’m not the type to subject my poetry on others, but when I ran across this poem that I must have written in a desperate moment, I’m guessing about three years ago (based on the Wubbzy reference), I thought it might resonate with others going through similar desperate moments.

Autism

Short

definition:

A neurological disorder…

Long

definition:

Something not quite

right.  Speech delay

Speech therapy, Occupational

therapy (hypersensitive, hyposensitive,

Gross motor – Gross like large not like

yucky, fine motor) From flashcards

to reading two years ahead

Obsess, obsess, Obsession

for months (Pizza rolls every single

night for dinner) (Wubbzy AGAIN?)

laughing, joking, never gets

old.  Still no empathy.

Logical, linear, Spock-like, must

follow the rules, follow the law, follow the

schedule.  No deviation, no changes, no

surprises, no fire drills or we derail.

anticipate, anticipate, anticipate

lay the clothes out, take the meds, follow the

schedule.  Nothing dirty, no holes, no stains,

hide the clothes when they get too small.  Still

might come back to bite you,

kick you, pull your hair, scream, cry, lie

down in the middle of the aisle

suffer the stares, the whispers, the grandma shaking her head, “Mm, mm, mm.”

(must learn that Vulcan death grip – what happens

when he gets bigger?)

What happens next? One day

One day at a time, one day

one day

Breathe, exhale and relax.

**********

Annie blogs at SimpleIJustDo.com: “I’m a single mom, He’s a special needs kid… Musings on the answer to the question, ‘How do you do it?'” She is “Mom” to a 10 year old boy with autism, and also a teacher, daughter, girlfriend, friend, and a whole bunch of other roles that make life a little more complicated, but enjoyable.

This post was originally published HERE and used with permission.

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Meditation For An Autism Mom

by Whac-A-Mole Mom from My Whac-A-Mole Life

This is not my fault.

I am doing the best I can, which means acknowledging that it will never feel like enough. I am only human.

I am gaining patience, resilience, wisdom and strength. I don’t see it; I don’t necessarily feel it; but it’s true. It just has to be true.

My home is a disaster – whether due to my Tasmanian devil child, diminishing time and money, or pure, unprecedented exhaustion (or a combination thereof). I must learn to care less.

I have lost sight of my identity, my friends, my professional drive, and my peace because I am laser-focused on my child’s well-being and future readiness. Still, I can take baby steps for my own sanity. For example, today, maybe I’ll shower.

I find myself saying and doing things I never imagined due to my child’s absurd, unpredictable behavior, interests and needs. I want to cry on many occasions; but it always feels better to laugh.

I am overwhelmed by the seemingly infinite cures, therapies, medications, treatments and diets that I am told will help my child. Some will help; others won’t. We’ll unapologetically do what works best for us, when it works for us – holistically, logistically and practically.

Each year, I will continue to search for the perfect school scenario for my child; nothing will ever fit quite right. I will take it day by day,year by year.

I am my child’s best advocate. I will trust my instincts. I will consult with professionals, doctors, teachers and psychologists; but mostly I have to learn to trust myself.

I will feel judged. Sometimes, I really am being judged, so I should grow a thicker skin. More important, however, I am judging myself, and I need to learn to be kinder to myself.

People will say, ‘I don’t know how you do it’ or ‘you’re an amazing mom.’ This inexplicably will irritate me since I wouldn’t dare admit that I also ‘don’t know how I do it;’ and usually disagree about the ‘amazing’ part. I do it because I am a loving mother. That is all.

I can’t do this alone; it does take a village. My village should include family, friends, caretakers, teachers, health professionals and therapists. When the village I have isn’t complete or up to par, I must seek a new village – like Twitter.

My child might hit me, hurt me or run from me. I cannot take this personally. It’s not about me. It’s about her: her frustrations, sensory differences and unfulfilled needs.

I always should be consistent, patient, firm and engaged. I frequently am not. I can always try again tomorrow.

I will realistically prepare her with the tools she needs to reach her potential. That means:

  • If she can’t or won’t find her voice, I will teach her other ways to communicate.
  • If she can’t or won’t be safe, I will find ways to protect her.
  • If she can’t or won’t learn how to survive in the social wilderness, I will place her in situations where she is accepted and happy in her own skin.

While some days I feel hopeless, I never, ever give up hope. I am her mother. And she is me.

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Whac-A-Mole Mom blogs over at My Whac-A-Mole Life, described as “the rants, raves, celebrations and tribulations of a crazy-busy, special-needs, mom-workaholic.” She has chosen anonymity for reasons she explains here: My Secret Identity. She will reveal, however, that she lives in the Southeastern United States and has two children under 12 with more diagnoses than she can count. Careful readers of her blog have discerned that she has worked as a journalist, corporate executive and nonprofit professional.

The 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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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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out here on my own

by Jennifer, fasten her seatbelt

It’s been four months since my last post…

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

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

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

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

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

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

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

S.    L.     O.     W.     L.     Y.

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

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

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

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

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

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

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

Title Inspiration:
Irene Cara:  Out Here On My Own

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

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

This post was originally published HERE and used with permission.

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Time For Me

by Ilene, My Family’s Experience With Autism

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

Then I realized something about this summer.

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

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

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

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

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

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

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

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

**********

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.

**********

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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