Monthly Archives: March 2012

I’m Putting On My Oxygen Mask This Year

by Jeannette, Autism Mumma

I don’t know if you are already aware of the “Oxygen Mask Project” and the hashtag #yearoftheoxygenmask?

If not, let me elaborate a bit. It’s a project being run to encourage us all to take a little bit of time out for ourselves, or doing something for ourselves.

Parenting a special needs child is exhausting, I can sometimes spend a whole day running from one thing to other, never actually achieving a great deal but getting through it because the school runs have to be done, the routines need to be kept to and once your children are in bed, that’s when you start thinking about what else needs to be done, and so it goes on.

I’ve had flu this week and I spent the weekend on the sofa, either snuggled up under covers or throwing them off because I was hot or cold and then because Hubbie had to be at work Sunday and football coaching Saturday, it was still me doing the chores, the cooking and everything else albeit at a much slower pace.

It makes you think about just how much of your day is taken up caring for others.

I’ve put on my “oxygen mask” this week and I’m thinking of ways I can take more time for me, or at least enhance the free time that I currently have.

I made time to have a haircut today – nothing radical – but it was “me” time and instead of looking in the mirror and chopping my fringe myself, I let someone else do it.

One of my resolves this year is to stop the childminding from July, this will be a natural end then as one child will leave to start Reception in September – his mother is a school teacher so she has the summer holidays off. I need to think about either something I can do from home during school hours or find a suitable job. Suggestions for the home element would be welcomed please.

I need to make more time for reading – books, blog posts, those weekly magazines that end up at the side of the bed. You can immerse yourself into a well written book and whether you come out of it feeling happy or sad at the end, it’s that time that you’ve taken for you. Reading is so relaxing, I’m so glad my children all enjoy it.

I need to take up those coffee offers when they come in, otherwise they’ll stop.
But at the same time…
I removed a negative element from my life yesterday. The comments, the voicemails dictating what I should not blog about finally got to me. No more.

Little things but they are going to enhance my life and keep me on track.

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I’m a proud mum of three – two sons aged 17 & 9 (C & T) and a daughter aged 7 (D). She has autism, delayed motor skills and enhanced sensory skills. This can make for a “challenging” time but we wouldn’t be without her.

And I’m a wife to one – Hubbie – works very hard to support us and very protective of his family. Supporter of Chelsea FC and a football coach at Saints Hawks (who our middle son plays for).

Two cat sisters – itsey & Bitsey – and 3 guinea pigs – George, Bungle & Zippy. Also childmind during the week.

I’m a learner driver too.

Life is busy but I prefer it that way, less time to stop and think!

This post was originally published HERE and used with permission.

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The day I dated myself

by Shona, A Life Less Ordinary

Things in our household have been a bit stressful as of late. I know this because my fuse has been short, my hair has been unwashed, and I walk by the mirror and don’t recognize the face staring back at me. It is at times like these when this little voice in my head tells me I need to take a break. It should be that simple. I should just listen and obey. Take a break. But instead I argue with myself about how I need to be at home and how it isn’t fair to leave my husband to take care of Kendyl by himself.

I make excuses for why I can’t spend the money to go shopping and I don’t need to waste calories on that latte at Starbucks. All the while I am trying to convince myself that I cannot get away, my fuse is getting shorter, my appearance more haggard, and my attitude more negative. This goes on until eventually I have what I consider to be a nervous breakdown…complete with sobbing and binge eating of chocolate. I finally decided that this has to stop.

So as corny as this sounds, I decided to start dating myself. My first date with myself, I took myself out to a movie. Sweet and simple. I figured I wouldn’t have to small talk with myself if I turned out not to be good company. I chose to see a comedy. I bought myself some Twizzlers. I put on make-up. I wore my favorite green sweater and pink scarf. I walked past the mirror on my way out the door and for the first time in a long time, I recognized the face. It wasn’t a bad looking face either. I smiled. A genuine smile. Incredibly, I had a really nice time with myself. I am a pretty good date. I actually enjoyed spending time with me and by the time I got home from my date, I was lighter.

So the next step I decided, was to spend a whole day with me….alone. Now this was a terrifying prospect. What was I going to do all day long without someone to take care of? Someone who needed me? But what I discovered was that I did have someone to take care of and who needed me….me.

I spent the morning at my favorite Yoga studio, I had a leisurely lunch (I actually sat down at the table, as opposed to being huddled over the sink shoving food down my throat). I had that latte (tall skinny peppermint decaf…I still felt guilty about the calories). I saw another movie. I played my guitar and my trumpet. I listened to my favorite music really loud and danced around the house. Before I knew it, the day was done. I did it. A whole day alone. You know what I discovered? Me.

The me I thought died the day the world turned upside down. The me I thought was buried forever under a cycle of grief that I can never seem to get ahead of. The me I thought I had to say good-bye to because I had the mistaken belief that moms of children with special needs must never think of themselves. They must spend 100% of their time, energy, money, and love on their child or they are abandoning them to their disability.

I’m not saying that I should write a book or anything. I’m sure this concept is already in some obscure psychology book somewhere anyway.  But it never dawned on me that I could see myself as someone worthy of being dated.  Now don’t blame my husband for not making me feel worthy. My husband takes me out (when Kendyl is healthy and we can mesh schedules with our babysitter…which happens about once every four or five months). He tells me I’m beautiful, important, worthy of love…He still opens the car door for me after 12 years of marriage. I guess I just never believed it myself. Until the day I took myself to the movies.

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Shona is the ordinary mom to one extraordinary little girl with a very rare chromosomal abnormality. She blogs about grief, loss, and rebuilding life when the one God gives you isn’t the one you expected. When she isn’t blogging, she is chef, chauffeur, therapist, nutritionist, teacher, advocate extraordinaire…and sometimes dabbles in living a life of her own as a yogi, musician, wife, friend, sister, and daughter.

This post was originally published HERE and used with permission.

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I Am An Autism Mom and I Am An Alcoholic

by Cheairs Graves, Redefining Typical

Drinking.

Wine.

So beautifully packaged.

Perfect.

Golden.

Pouring you into a cup so that I can breathe.

Waiting for that five o’clock hour so that you can help me.

Shhhh….nobody can know.

It is our little secret.

I will only bring you forth from your bottle when nobody is looking.

When he is with the kids I will sneak to the kitchen and grab you.

I will pour.

Don’t worry I won’t leave you alone for long.

I need you.

You help me.

I deserve you.

My son has autism.

Six letters no mother should ever have to hear.

Six letters that leave me on the cold kitchen floor.

Rocking.

Holding my knees.

Clinching my fists.

Crying.

My back hitting the wall.

And I am alone.

So very alone.

And my sweet boy rolls on the ground.

In a world that I do not know.

And my  precious girl. She needs me. Oh, how she needs me.

And I stand.

I walk to your most sacred place where you are kept.

I take hold of you.

My heart begins to slow because you…..my most beautiful wine…..you will help me.

And I pour you.

I take a sip.

Because you my friend -you help me to stand.

And the one glass of wine to take off the edge….. turns to two.

Two turns to three.

Three to four.

One bottle of wine turns to two bottles of wine.

And I yell at my children.

And when my husband  travels I drink more.

And when he is home I drink more.

Trips to the store to make sure I have enough of you.

Because I can’t do it.

I can’t do it without you.

My sweet, sweet friend.

My wine.

And then I pass out.

Leaving him.

Leaving them.

All alone.

I wake in the middle of the night.

Head pounding.

Face splotchy and red.

I can’t remember conversations with my husband.

My marriage-slipping away.

My daughter’s questions-“What are you drinking mommy?”

And more lies come from my lips as I laugh, “It is mommy juice.”

The planning.

The scheming.

To make sure I have enough of my new best friend.

My  beautiful-fun-wine.

But I am still there.

Curled up on the cold kitchen floor.

Hands around my knees.

Rocking.

And this best friend.

My wine.

This lovely liquid that I chose for my Oxygen Mask.

It is chocking me.

It is killing me.

And I will die.

But I can’t give up my best friend.

I am scared to give her up.

I don’t know how…..

What will I do without her?

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

It has been two years and ten months since I have had any alcohol.

It was on bended knee that I started seeing an amazing therapist whose grace, gift, and loving hands have helped guide me on this road of recovery.

It  was with great hope that I went to see my physician who started me on an antidepressant.

It was my husband who held me tight and whispered the words  “I love you. We will get through this.” when I told him that I did not know how to stop drinking.

It is with encouragement of family, friends, and you that I began to share my journey through my blog. To cry the tears in the written word and let others hold them and wipe them away.

I had to let go of that friend.

I had to say good-bye to my most precious wine.

Oh, she still calls my name.

But I won’t go back.

I can’t

Because…..

I can feel the pain.

I can feel the sad.

They won’t crush me.

I am not alone.

I have my husband.

My children.

My writing.

My therapist.

My exercise.

My friends.

My church.

They lift me when I can’t stand.

They hold me when I cry.

They rock with me when the pain feels like too much.

Yes, they are my oxygen mask.

My glorious and wonderful oxygen mask.

And they-yes they- help me to breathe.

Coyright Cheairs Graves March 22, 2012

Photo Credit to Susan Lowe at http://www.sflphotography.com

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

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It Really Is Worth The Mess

by Kelly, Raising Rebels

I don’t consider myself particularly crafty.

I don’t consider myself very artistically talented.

In fact, I think I’m a bit challenged in those areas.

However, I really enjoy painting, drawing and card-making.

Once upon a time I carved out time to do those things.

Perfectionist that I am, I only occasionally deemed my creations good enough to give away. However, I enjoyed creating them even if they just went in a box or tossed in the trash.

For me it really isn’t so much about the finished product as much as it’s the joy I find in the creating.

Somewhere along the way I stopped.

Sure I’ve done simple crafty things with the kids here and there. I’ve even made a card or two to send out.

However, creating just to create. Creating simply because I enjoy it and want to spend my free time in that way came to a complete halt long ago.

I remember clearly my last 3 projects.

In April 2004, my brother Aaron died and I created a scrapbook of pictures to display at his funeral. It wasn’t fun for obvious reasons. In fact it was really, really hard. However, it was also part of processing my grief and it was something that I felt an overwhelming need to complete. I gave up sleep, pushed aside other things and made the time because I wanted to…had to do it.

In September of that same year, I invited my mother in law and cousin to come over for a time of hanging out and making cards. I was pregnant with Aaron and wanted to have all of my baby announcement cards ready to send out. That was hard too. We had a lot going on, life was busy and I had so many other things to do with that time. Yet, I wanted to do this. I needed it. I needed the break, the chance to just have fun and do something I enjoyed amongst all of the demands that came with parenting young children.

A few months later I started something I’d never done before. A quilt. I do not sew. I do not quilt. I really know nothing of such pursuits. However, I had an idea and it wouldn’t let go of me. In a plastic container in the basement was an assortment of clothing belonging to my brother. I thought: what if I asked family members to make quilt squares with pictures, embroidery, fabric paint messages, etc and then used Aaron’s clothes to make other squares and sewed it all into a quilt? I sent out letters, several family members made quilt squares for me. I cut up many of his shirts for extra squares. I think I even began sewing (with Kev’s help) a few together.

Then I stopped.

It was hard. I didn’t know what I was doing so it was hard technically and I was frustrated.

I was stuck in grief. I didn’t know what I was doing in trying to process all of that so it was hard emotionally.

I stopped.

The quilt pieces still sit in that same plastic tote that I first brought home from New Hampshire after his funeral. I found it the other day when looking for something else.

I’ve had a million reasons.

Some of them just the reality of this life. Juggling all that comes with parenting these children and trying to meet their needs on so many levels. The all consuming years since 2004 where we’ve sought out answers and help in dealing with the ongoing health issues, and other challenges of our kiddos. Unable to keep all the plates spinning I slowly dropping just about all of them one by one.

Some of them just excuses. It’s a pain to get everything out, work a little and then have to put it all back. It’s just not worth the mess. I have so little time and the time I do have I’d rather just read or dink around online and not go through the hassle and clean-up.

Some of them just guilt disguised as valid reasons. If I have free time to do crafting, I should be a good wife and spend it making the house a little cleaner, baking Kev’s cookies instead of spending the money to buy them every week. I should spend that time devoted to researching and trying to help my boys find the supports and tools they need to navigate a world that is often tough for them…

On and on. A million and one reasons that it’s not something that can be part of my life right now.

Until this past week.

I went to the craft store.

I bought supplies.

I came home and let the kids paint. All five of them.

While they painted, I started my own project. I quickly realized that was a mistake and I’d need to wait until they were finished before getting back to it. The point is…I started my own project.

A project just because I wanted to do it.

A baby shower gift for a friend, but really, a gift for myself.

I had forgotten how much I enjoyed it.

I’ve decided that my house will not fall down around me if I let a few things slide for a day or two every now and again.

It’s okay for me to breathe.
It’s okay for me to do something fun “just because”.

Actually, after this week, I think I’ve decided it’s more than okay. It’s necessary.

I’m a happier person, a better wife, a better mom, a better friend when I am taking care of myself. Part of that includes doing things I enjoy. Obviously, we need a healthy balance. Life isn’t all about me and I cannot forsake my calling as wife and mother in the name of self. For far too long though, I’ve let the pendulum go too far in the other direction.

So, after nearly eight years, I’ve decided that it really is worth the mess and the time and the hassle of clean-up because *I* am worth it.


(for those interested, I didn’t do the letters free-hand. I used this tutorial fromAimee Weaver’s blog…except on canvas, rather than wood)

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Kelly is married to Kevin, a real life Superman. His cape is a bit faded, but that’s okay because Kelly’s Superwoman cape fell apart long ago. Together they are conquering the world or at least trying to leave their mark on it. She spends her days caring for and homeschooling her 5 little rebels. They are a quirky, challenging, inspiring, amazing bunch of kiddos that happen to have some special needs scattered amongst them (SPD, ASD, Tourette’s syndrome, reflux, inflammatory bowel disease to name a few). She enjoys wearing fuzzy socks, laughing with her husband, drinking mint tea and watching her children sleep. She began the blog www.raisingrebels.blogspot.com as a way to share homeschooling and snippets of life with relatives. Slowly she’s been finding her voice and beginning to share her heart more freely on matters of faith, family, special needs and life in general.

This post was originally published HERE and used with permission.

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You’re Not Walking This Journey Alone

by Gina, Special Happens

The day of chaos starts as any other. Her youngest kids jumping on her as their own personal trampoline; the requests that feel as the demands she’s come to know are swinging to her from the left and the right. The mad rush to awaken school children not already brought to the morning’s shine by the laughter of the aforementioned toddlers..bath-rooming..dressing…breakfast…backpacks – none of which is complete without scuffling, followed by outcries of the wrongdoing only siblings can radiate. The familiar redirection / discipline / rant / word-flow-that-has-lost-its impact-but-still-is-parentally-necessary comes from her spontaneously.

On this day’s menu, beyond the outlook of laundry, milk spills, chasing of naked kiddos, gardening, meal preparation, meal clean up, baths and more of the spontaneous redirection, is therapy. Therapy organizing, arguing with insurance over, coordinating between various therapists, enforcing the school’s responsibility for…sticking to schedules, completing home therapy and anything else that comes up. Usually research.

Days like these continue on. A never-ending cycle of waking, filling the day with the same routines, finding her way to bed though sleep may never come, and doing it all again – the very next day. Other matters may insert themselves into the day, usually more aggravators. Realizations that her old friendships are gone, a fight with a spouse, an illness of a child, the awareness that the ‘scent’ she’s been smelling comes from her own body – it’s been days since she’s had enough time to herself to allow a shower.

She carries herself to the mailbox, cringing knowing her sights will set on the next medical bill for this or that. An envelope greets her. One unlike the others. Brighter. Less officially shaped. Personalized handwriting, marked with a familiar name. An unexpected delight of “Happy Mail”.

A far away friend sent her a card. A card with no particular reason to be sent other than for one woman to tell another that she gets it. That she thinks of the other. A card that is sent so for just one moment a smile will ride its way across the face of a mother as she continues about her life’s routine. So that for one moment, spread out numerous times through however many days it’s willing to linger on, a friend is reminded that she is not alone. She is reminded that another shares her journey, her heartaches, frustrations, her exhaustion…

At least that’s what I hope she felt when she received it.

A friend once asked me, “What can another ever do to help a fellow parent, parenting a child with special needs?

I could come up with a list…I might come up with a list…but in truth, there’s one simple answer. A card. A simple note (preferably funny) that signifies,

“I get it.”
“I’m thinking of you.”
“You’re not walking this journey alone.”

Nothing more is required.

Card : Delgrosso via Flickr

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This post was originally written and published by Gina St. Aubin on Special Happens, a community resource and blog for parents and caregivers of children with special needs.  Gina began her involvement in the special needs community in 2003 when her eldest son was diagnosed with Cerebral Palsy at nine months old;she now advocates for those with intellectual and physical challenges. Beyond Cerebral Palsy, her son is now diagnosed with Autism, Sensory Processing Disorder, ESES / LKS (a rare epileptic disorder causing verbal aphasia) and Developmental Delays.  You can read more on www.SpecialHappens.com.

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Not-So-Caffeinated Autism Mom

by Angela, Caffeinated Autism Mom

About a week ago on Facebook I shared the following with you: “Confession: For the past 2 weeks I’ve been drinking decaf. The shock! The horror!” I was quite amused by your responses! From your comments, as well as comments from some of my own friends locally, I’ve gotten the tongue-in-cheek question, “Are you going to change your name to Decaffeinated Autism Mom?”
One word: NO! I am still your favorite hard-core coffee junkie that you have come to know over the past year. So, let me give you a little history on what’s been going on.

I have been working very hard, just like every other stay-at-home mom out there. Trying to keep the children alive and the house from falling apart can be a challenge for anyone. As you know, I also run a special needs support group and that takes time. And, in all of my additional spare time (LOL!), I recently took on the role of Executive Director at my own nonprofit organization. The nonprofit involves volunteers, a Board of Directors, meetings, work parties, hard work, energy, and LOTS of time. Trying to squeeze the duties of a full-time job into the few minutes and hours I can spare out of my day (or the wee hours of the morning) has been a challenge.

Health wise I’ve struggled with many things, like: allergies, migraines, reflux, etc. In helping my boys, I’ve learned a lot about how to approach health from a more natural perspective. I have been able to take myself off of all of the medications I had been on for a very long time. Things have been fairly good since that time, except for the fact that my weight never seems to budge. Genetics are certainly not helping in that department!

As I’ve taken on more and more responsibility and stress in the past year, I’ve been noticing the return and slow progression of some of my old symptoms. I knew that I didn’t want to go down the road of meds again, but I also wasn’t making a concerted effort to change things either. I’m lazy when it comes to myself. I admit that.

I go to great lengths to do what is best for my boys’ health and properly manage their specialized diet. After all of that effort for them, I don’t really want to make the same effort for myself. Yep. Lazy. And it caught up with me.

It was getting to the point where I wasn’t having any days where I felt good. I knew that I had to finally do something and make myself a priority. I knew if I didn’t, I could end up like my mom. She has very poor health and is now disabled. I don’t want to follow in her footsteps.

New Years came around. You may recall that I don’t make resolutions. I create change. My change for 2012? Get better control of my health again.

It had been such a long time since I had been in to see my naturopath that my chart was in archives. Shame on me. No wonder I was having trouble! After sharing my laundry list of symptoms and concerns, guess what happened? My doctor placed me on a restricted diet.

NO flour. NO sugar. NO juice. NO alcohol. NO gluten.

Oh crap. It stung when she told me. I am a serious carb and sugar addict. Always have been. I can live without juice and alcohol (well, mostly…), but carbs and sugar? I am already quite the gluten-free expert, so I wasn’t worried about finding whole gluten-free grains to eat. But, seriously? No sugar and no flour? Kill me now.

I will admit that in the week leading up to getting lots of blood work done (and the deadline to start my new diet), I binged on sugar and flour. Pasta, I’m going to miss you! Nom nom nom. Cake, you are so delicious! Nom nom nom. Looking back, it was juvenile and disgusting. At one point, I ate dessert until it made me feel nauseatingly ill. I was ready to make the change. And I did. And I’ve been a good girl!

It’s been about a month since I started this new dietary lifestyle. Most of my symptoms are gone. Surprisingly, positive changes began happening within the first 24 hours of starting the new diet. It has certainly not been easy, but it’s been necessary. And, I feel so much better!

One new thing I’ve discovered is that I cannot tolerate caffeine as well as I used to. It had never affected me before. I used to be able to drink coffee at any point during the day, right up until bedtime, and have no ill effects. Now that my body has much less internal inflammation, I can immediately tell when I’ve had caffeine. I made the mistake of drinking 4 cups of coffee during breakfast one morning and I felt sick until late that afternoon. Since then, I switched to either half-decaf or decaf. I still get my coffee fix without feeling awful. Maybe this is a temporary thing while I work out the rest of my symptoms. Only time will tell.

I think I’ll go grab a cup of coffee now!

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Angela (a.k.a. Caffeinated Autism Mom) has 2 wonderful boys diagnosed on the autism spectrum who also have sensory processing disorder and multiple food allergies. Her boys, Monkey and Prince Charming (a.k.a. Grumpy Badger on a bad day), are awesome and challenging. Angela is a stay-at-home mom extraordinaire, chasing her boys around and chauffeuring them to therapy, all while trying to keep the house from falling apart. She is blissfully married to Titan who makes her laugh, which is a critical survival strategy. Angela loves to read, watch reality shows, hang out online with her Facebook peeps and Tweeple, and make a mess experiment with GFCF recipes in the kitchen. She is a coffee connoisseur with a Type-A personality, which probably contributed to her crazy decision to run a special needs nonprofit organization in addition to her support group. Angela is also a contributing author in the book, Sensational Journeys and is a member of the SPD Blogger Network.

This post was originally published HERE and used with permission.

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Just Breathe

by Ashley, Stinker Babies

Have you heard of The Oxygen Mask Project?  It’s a movement in the special needs parents community to claim 2012 as #theyearoftheoxygenmask.  The idea is that you need to put on your own oxygen mask before you help others.  If you don’t, you’re no good to anyone.  (Remember the safety speech from the flight attendants?)

It’s so important but so very easy to forget when you’re trying to make sure everyone else’s needs are met.  I’m making it my goal for this year and taking baby steps towards taking care of myself every now and then.  Those steps aren’t always successful, but I am taking them!

An example?

On Thursday afternoon, I looked up from the dishes and realized the kids were actually playing quietly.  I had a moment of triumph as I claimed victory in the battle to find time for myself.  I totally abandoned the dishes.  (They needed to soak anyway, right?)  I quietly grabbed my yoga mat from the closet, tiptoe-ran over to the TV, and pulled up our “On Demand” fitness choices.  I was trying to be absolutely silent because I knew if the kids heard the TV come on, it would become Dora vs Thomas instead of Mommy Time.

I scrolled down the list of options and found the perfect thing.  It was 24 minutes of a pilates routine that focused on relaxation and breathing.  Score!!

I pressed play and the gentle music began as the instructor calmly and quietly began the instructions.  I laid back on my mat, closed my eyes, and breathed.  Ahhhhhh.  Just breathe.

I felt something drip on me right between the eyes.

Nope.  Not happening.  Just gonna ignore that.  I’m sure it’s nothing.  Because I’m breathing here, for crying out loud!

Drip.
Drip.
Drip.

Ugh.  I glanced up and found myself looking right into the eyes (and runny nose) of my 3-year-old daughter who had, apparently, been hovering over me.

“Mommy?  Mommy?  MommyMommyMommyMommy!”  She stage whispered.

I managed to hold back my groan but I didn’t like where this was going.  “Yes, Gracie?”

“Are you sleeeeeeeeping?”

Caleb soon joined in the fun and after a few minutes of them crawling under my legs and hanging onto my arms, I found myself using my “mean mommy” voice and yelling, “Get on the couch and BE QUIET!  Mommy’s trying to BREATHE!”

Well, that got Caleb started about the lobes of the lungs (because the lungs have been his favorite part of the body ever since he learned about them).

And you know what?  It actually kinda worked out.

I managed to finish my “relaxation” yoga while the kids added some resistance training and anatomy lessons.  And the best part is that I actually took that step towards putting on my oxygen mask.

Before you know it, I might actually be breathing!

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Once upon a time, there was a very nice girl who was relaxed, patient and calm. Then along came the Stinker Babies and life was turned upside down! Now she considers it a successful day if her clothes match and her teeth are brushed.  As she helps her husband through nursing school and raises two crazy awesome kids (one of whom has autism), she is on a new quest to document the beauty of motherhood. She’s pretty sure it could be hiding underneath the piles of laundry or behind the stacks of dishes!

This post was originally published HERE and was shared on our site with permission.

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strength

by Molly, The Writing Life

the fragile strength

that i know lies in your arms -

in the spaces between bone and sinew;

in the very cells shocked into movement -

now they are quiet.

now they lay still.

i glide my hand over your arms,

the softness of low tone beneath my fingers.

weak, like jell-o now;

no, jell-o has less give.

i remind myself of their strength

of the deceptive nature of the words “low tone.”

that what appears weak isn’t, necessarily.

those strong parts were knit together inside of me

that strength came from me.

you have more fight in you than anyone.

perhaps your strength is a metaphor

for my own;

a reminder that we give and take from one another in this life.

and so i draw breath, rise up, and move forward.

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Molly is a mother of two beautiful kids, one of whom has ASD. She survives on love, laughs, caffeine, chocolate, and sarcasm.

This post appeared HERE and was published on our site with permission.

 

 

 

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What The Whole Family Needed

by Amanda, Confessions From HouseholdSix

Something had to give. I wasn’t the only one running on fumes. Even though I’m the primary care giver for the boys, the one who coordinates all of the therapies and doctor appointments, I could see it was taking a toll on my husband too. I had to wonder if it wasn’t because he was actually home last summer. The first summer he’d been home in eight years. Yes, you read that right, eight years. You see, between deployment and ROTC duties, he had been gone those eight previous summers. The only reason he was home last summer is because it was thought he would be changing jobs and we could potentially be moving. We took our first family vacation – ever. It was respite we ALL needed.

By the end of the summer, I was losing my mind. I had found out that the Army affords us a respite care benefit. I about fainted. I needed it. WE needed it – on so many levels. So much of the last eighteen months at that point had been spent on autism, therapies, doctor appointments, and school. We’re still in that cycle, but everything is established, so we need a break. We are taking advantage of the respite care we are given.

My husband and I have been out together twice now. I’ve also had a day where I had a respite provider here to help me so I could get things done and just have an extra set of hands. It’s been just what the doctor ordered. My husband and I have been able to get out and reconnect as a couple. We’ve been able to talk about important issues without worrying about little ears hearing. We’ve been able to talk about our other interests as well. We’ve been able to go out and enjoy hot meals without worrying about cutting someone else’s food, breaking up fights, or playing tic tac toe. We’re rediscovering the area we live and new things to do both as a couple, and finding new things where we can later go back with the boys.

The boys have gotten respite in a way too. They’ve gotten a break from their mentally tired parents. They get someone who comes to the house ready to play and pretty much do their bidding for the duration of their stay (within reason). I’m OK with that. We’ve all been able to come back together as a family after our outings recharged and happier to see each other again. The boys are even asking when we’re leaving again.

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Amanda currently resides in Central PA with her husband, her 10 year old son, and 5 year old son. Between the boys’ multiple health needs and the Army, the family speaks fluent acronyms. Amanda attempts to maintain what sanity she has left by writing at http://confessionsfromhh6.com and contributing to various other publications both on and offline.

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If I Can Make It There

by Megan, Little Wonder Boy

There’s a movement starting in the special needs community called The Oxygen Mask Project. The idea is based on the spiel we all have to listen to every time we get on a plane. Put the oxygen mask on yourself before you help your children, because if you go down, you can’t help anybody. For parents of children with special needs like autism, it can be so, so hard to do this, but it’s true. If we don’t take care of ourselves, we won’t be able to take care of them.I remember when I first heard about this idea, and I thought, that’s really smart. I’ll just stick that idea here, at the bottom of this really long list of crap I need to do. At the top of that list was my (ultimately losing) battle with my school district over changes they had proposed for my son Jonah’s special education program. For weeks, I wrote letters, yelled, pleaded, recruited, spoke at board meetings and lost sleep. In the end, I failed, and I ended up with a deep cough I can’t shake and a fantastically sexy psoriasis flare.I first developed psoriasis last year around this time. My type is caused by strep infections and/or stress. I had two strep infections within a few weeks of Jonah’s start date for special ed. Again, I wasn’t sleeping, I was sick with worry, and I was just plain sick. What can I say? I’m a slow learner. Here I am again, and this time I need to sit up and take notice of what my body is telling me. The problem is, I feel like a jackass, demanding a little “me time” when so much is going on. Yes, I have three young children, and two of them are twins and one of those twins is autistic. But is that enough? I mean, Jonah’s pretty high functioning. It could be a lot worse, and for lots of parents, it is. I feel like there are moms out there who adopt 14 severely disabled children and spend their days smiling and counting their blessings. I sort of feel like a whiny jerk, but I’m trying to squash that feeling down and make some changes.For me, it really helps to have something to look forward to. Something big. My friend Jim is starring in a play on Broadway this summer, and I have vowed to go see him. Someone asked me if I’d be taking my kids. Um, hell no, I’m not! Does schlepping three small kids through New York City sound like a vacation to you? I want to stay somewhere nice and sleep as late as I want. I want to catch up with old friends and drink wine and eat wonderful things and just shake out the kinks for one measly long weekend. I even like that it’s not until June. It gives me somewhere to go in my mind, when checking out mentally is the only reasonable option. I like the whole idea of looking forward to something. Of looking forward.


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Megan is a microbiologist turned stay-at-home mom living in central Texas with her husband Corbin , her fantastic six year old Elena and her beautiful four year old twins (and partners in crime) Gabby and Jonah.  She writes a blog about parenting and autism at www.littleboywonder.blogspot.com

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