Monthly Archives: February 2012

Breathing Freely

by Spectrummy Mummy

I’m not sporty.  At all.  The girl who never got picked for a team?  That was me.  My husband refers to me as “indoorsy” and he is spot on.  I enjoy getting cosy under a blanket with a good book or TV show.  I enjoy treating myself to cups of tea, or hot chocolate…actually, chocolate in any form.  Lots of chocolate.  I have a feeling that I’ll make the most content old person ever, having practiced for it all my life.  As long as my home has plenty of chocolate.  On a Saturday evening we’ll put the kids to bed, eat take out followed by treats and watch TV, just lazing around.  It does me good, but it isn’t good for me.

I don’t enjoy exercise in the way that I feel about my more passive pastimes.  But I need it.

Last year was tough.  For the first half of the year, I felt like I added an extra worry every day.  There were big things like additional diagnoses, assessments for the other child, moving to another country…and other big  things like a supportive friend moving away  and trying to coordinate therapies for two children.  That is the thing about life- there are never any little things, and before long I was suffocating under the weight of so many big things.  After more than a decade symptom-free, I was back on two different kinds of medication for asthma.  Just so I could breathe.

Once we moved, I knew I had to make changes if I was going to stay healthy for my family.  We found a babysitter.  Once the kids were in their respective preschools, I started going to the gym.  And though there were still stressors, they didn’t seem to weigh me down so heavily.  I no longer need the asthma medication- I’m breathing freely again.

Now I can’t get enough pure oxygen.  Last weekend we took the kids outside to play sports.  Pudding refused to join in, preferring to draw with chalk.  Cubby soon tired too.  We couldn’t compete with the allure of the other kids in our housing complex, who are impressively accepting of our kids, quirks and all.  Instead of sinking in a chair to keep an eye on them, I suggested to Spectrummy Daddy that we had a game of tennis instead.  We only have plastic Swingball rackets, and the balls didn’t have half the bounce our kids do, but we managed quite the game!

We used the driveway for a court, and both of us were running around for the ball, unable to convince the kids to collect the strays.  Before long we were both a little out of breath, but this time in a good way.  We had a good time, and it doesn’t hurt our kids to see us play.  Maybe next time Pudding will join in too.  Spectrummy Daddy even said he’d pick indoorsy me for his team.  Maybe we were all winners that day, but the score was love-all.

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Spectrummy Mummy is a British Expat living in Johannesburg with her diplomat husband, Pudding (an atypical five-year-old girl), and Cubby (a nearlytypical two-year-old-boy).  Her work has been published by The Telegraph, Parenting Magazine, Autism Speaks and others.  She has contributed to Hopeful Parents, The SPD Blogger Network and The Thinking Person’s Guide to Autism.  She writes about Asperger’s, Allergies, and Adventures Abroad at her blog.

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Turning The Cranky Off

by Brenda, Mama Be Good

I have about two minutes to myself today.  And you guys know I’m not complaining – not really.  I’m just cranky.  I need more than two minutes.  And I’m using hyperbole.  I’m cranky and I have an infectious hyperbole, so get outta my way.

I need some time off.  I wanna do some of this and some of that.  I’d like to get my toenails back to that color.  I’d like to clean out my refrigerator.  I’d like to take a nap.  And some cold medicine.

Also.  The sleeping, I mean, not sleeping.  Tossing, turning, not really sleeping, waking up.  Seven years of sleeping like a baby will tell you why sleeping like a baby is NOT a good thing.

And the eating.  You know how you think you’d just place some food in front of your child and tell him to eat?  Or say eat or no dessert?  Or if he doesn’t eat this time, that’s okay?  Well, I’m still sitting down with my child every meal and feeding him.  And I can’t say it’s okay if he doesn’t eat because he really wouldn’t.  Ever.

Complaining about all this makes me feel guilty.  I’m complaining because I feel cranky.  That’s all.

Because I am lucky.   I’m lucky to be at home all day with my child.  I’m lucky I don’t have to work when most mamas have to.  I’m lucky because being at home with me has been the best thing for my child.  I’m lucky because I discovered unschooling.  And it works.

I’m lucky I don’t have to worry about my son being bullied by classmates.  That I don’t have to fight in IEP battles.  That I’m not in a struggle with a school on a daily basis.  That my son has the perfect learning environment.

I’m lucky that my husband and I agree perfectly about all this.  That we both have the same vision and goals.  That we both would rather live the way we do – old furniture, a house that creates its own dust – so that I can unschool our child.

I love knowing exactly what happens with my child throughout the day.  That I’m the one who gets to see his mischievous smile, his twinklyeyes, hear his delighted laughter when he explores his favorite new interest.  And that I’m the one who helps him when he’s upset.

Take a minute, Mama.  Deep breath in.  No, I mean deep.  Deep breath out.  Again.

I am lucky..

I am very lucky.

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Brenda Rothman is a writer, public speaker, and political activist with a background in information technology, writing, and health law. She is a parent to a child diagnosed with autism. Brenda blogs at mamabegood.blogspot.com. She has written for The Thinking Person’s Guide to Autism, TPGA blog, and the Sensory Processing Disorder Blogger’s Network. Her essay about race and autism was featured by Denene Miller on My Brown Baby’s blog and Parenting.com‘s blog. She lives in Atlanta with her patient husband and brilliant, beautiful son Jack.

This essay was originally published HERE and was posted with permission.

 

 

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Two Steps Forward One Step – The Setbacks

by Marianne, The Coffee Klatch

You know what I am talking about.  Any parent raising a special needs child knows about the setbacks.  The kick in the stomach, racing heart, internal restlessness,  sleepless nights re-evaluating and reassessing the situation until you can’t think straight.  That fear that grips you and makes you doubt yourself as a parent, yup, welcome to special needs parenting setbacks.

If there is one thing I can tell you with absolute confidence it is this: there will be setbacks, many setbacks.  There will be those days that out of nowhere you are struck with the enormity of it all, the  days that you just break down and need a good cry.

I remember the days that I measured progress and setbacks in hours. Days that drained me both mentally and physically.  With time and with my child’s acquirement of calming and coping skills the hours turned into weeks then turned into months and dare I say, with fingers crossed and pajamas inside out, now years.  I can catch my breath, I can go to the store without a knot in my stomach and a cell phone on loud clenched in my hands.  It’s been a long road of two steps forward and one step back. Smooth sailing you are thinking, not quite, the fear and insecurity I believe will say with me for many years to come.

The panic and constant state of anxiety parents of special needs children experience almost become a part of you.  It consumes you.  The nature of the beast becomes embedded in our brains and we know that with so many variables to triggers that we can never completely let our guard down.  Many parents become proficient at being proactive, walking on eggshells and creating a sensory friendly world that is foreign to others.  We are militant in our preparedness to avoid that dreaded meltdown and disregulation that once started can set off a chain reaction that can last hours or even days.  Studies have shown that special needs parents have cortisol levels equal to or higher than war veterans. We are warriors.

With time, education and parenting classes or webinars we earn our degrees from the University of “Living It” magna cum laude.  We become fluent in neurobiological definitions and the intricate workings of the pathways of the brain and neurotransmitters yet the diversity and individuality of each of our children make us vulnerable.  It is that vulnerability that catches us off guard and sets us back.

Given the fact that I have been to hell and back I feel I can speak to this with some conviction.  My best advice to you is this….. It happens…..It will pass……. You will get through this – Do not panic.

Waxing and Waning are part and parcel of neurobiological disorders, autism and mental illness.  These periods of exacerbation can be very predicable and often dreaded.  Some variables are the change of season, change of time zone, viral or bacterial infections, allergies, periods of social or academic stress and for some the unstructured times of school breaks.  Some of the exacerbations seem to come out of the blue.  Those are the ones that really knock us for a loop.  It is the randomness and unpredictability that has us on constant edge.  It is the fear that the regression will remain and our child – our families – our lives will fall back into chaos.

I write about digging out of the trenches, learning to survive the journey and pulling yourself and your family out of the pits that suck you in, well, every once in a while you slip back into one.  I think the most important thing for parents to start to do once they get their bearings is to not panic.  When these times of disregulation or rise in symptoms occur our first reaction is to panic, it is a knee jerk reaction.  We often feel that everything we have done was useless.  We drive ourselves crazy trying to find the cause or trigger and immediately think we need to make changes. I can tell you that is not always true.  Some things need to run its course, we cannot change them.  We can be there, we can comfort but we cannot change them. I think that during these times we should take the advice of the flight attendants and put our oxygen masks on first, calm ourselves and understand that the tools and the skills we have spent years giving these kids do not dissipate into thin air.  They will use them but it takes time.

I began to look at those setbacks as a time to have a reality check.  It was a time after some smooth sailing to remember that my child has a disability, that life is hard for her,  that the unpredictability of her life was even more terrifying for her than for me.  Instead of contemplating drastic measures I gave it time to settle, I gave her time to settle and I dropped expectations until the storm passed.   Adjustments were often made but not demands.  These are the times to be kind to your child and to yourself.  These are the times to do whatever it is that helps you maintain calm and clear thinking.  Over the years I began to see the pattern, I awaited the pattern and I accepted it.  I’m not saying it wasn’t hard, it was devastating and many many times I felt I couldn’t get through it, but I did, and so will you.

The setbacks are the reason that we continue to teach calming skills and coping tools when they are in remission or stable.  The setbacks are why it is vital to continue therapies and strategies in times of calm.  It is during those times that these kids absorb the knowledge of the abilities that will get them through the setbacks. As these kids get older,often times they begin to sense the oncoming exacerbation and can participate in being proactive to cut them off and communicate their tolerance level.  Parents and educators need to listen and observe to try to make accommodations before these kids fall into their abyss. It’s easier to climb out of a ditch than a gorge.

I wrote “Try”… Try to make accommodations before these kids fall into their abyss.  Sometimes all we can do is try and sometimes trying just doesn’t work.  Sometimes we are just going to have to go through the pain of the setbacks and try to breathe.  Unfortunately there are times that our best will be to simply function, to take those two steps forward and one step back and know that this too shall pass and with each step their are gains. Two steps forward and one step back still gets you ahead.

As we waited for the storm to pass we learned how to dance in the rain – Vivian Greene

Wishing you strength and calm.

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As President and founder of The Coffee Klatch and Special Needs Talk Radio Network I have the opportunity to give parents of special needs children a forum to find and share the best resources and information available. As a mother who has been in your shoes I hope to give the most important gift of all through these writings, the empowerment of confidence.  Empowering parents with information, inspiration, options and hope to be the best advocates they can be is my goal.  What you see is not always what you get. I encourage parents to dig deep, always searching for answers and never give up hope.

I have spent the past twelve years searching for answers to the organic basis of anxiety and depressive disorders in children and adolescents.  My special interests are neuroendocrinology, neurobiological disorders, endocrinology, immunology and early onset neurobiological disorders. My search has taken me on quite a journey and it is that journey I share with parents. We may not find all the answers but with acceptance and determination we find the strength.  Accepting the diagnosis is one thing, accepting the life it will bring is something completely different and much more important.

As I end my show each day “You are your child’s best advocate, if not you then who, become an informed, educated parent.” Empowering parents of special needs children is my goal.

Parents need an advocate as well as their children and that is the role I gladly take : The Parents Advocate.

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

 

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The Great Water Challenge

by Kelly, iknowwhytheycallitaspergers

Navigating my way through the land of parenthood can be fantastic and challenging. Recently I decided to make an effort to be more connected to the parenting world, and this is when I stumbled upon the Oxygen Mask Project. After reading about the Oxygen Mask Project’s mission, I decided to take the challenge to do ONE thing each day to take care of myself, so in turn I can take care of my children. As many parents know, my needs tend to be at the bottom of the list… I am the last one to eat my dinner, my laundry is put away after everyone else’s laundry, and I am generally the last one in bed at night.

Parenthood is a marathon, and unfortunately there are no water stations along the way to force to pause and take care of yourself. Thus, I decided the one thing I would do to take care of myself is to drink water everyday for 30 days. How hard could that be? Water being the metaphor for pausing, breathing, and remembering I have to put on the oxygen mask first before I can help me kids. 

Day one of my challenge seemed easy. Then by day two and three, I had already forgot what my goal was. I even remember laying in bed thinking, “I did drink a sip of water at lunch, right? That counts”. Now wait a second, my plan was to drink water, at least 8 ounces to a gallon a day. At yet, I am now accepting a sip of water as taking care of myself?! Really this is symptom of a bigger problem, I have to plan to take care of myself or I will squeeze it out of my schedule.

I had to step up my game if I was going to meet my simple goal of drinking water everyday for 30 days. First, I had to buy bottle water at the store, in a large container and smaller travel bottles. I find if I don’t have the bottled water staring at me every time I open the fridge, I will get amnesia and won’t drink it. Next, I had to start thinking about my day, and plan when I would have a chance to drink water… eating out, bringing a bottled water for the car, using the water machine at work. Who knew I would have to plan for water? Finally, I had to trick myself to make it a priority. “You can have another cup of coffee, if you first drink a glass of water”. Mind games.

But doesn’t this water analogy define what it is like to take care of yourself or not take care of yourself in the journey called parenthood? I find I have the best intentions to care for myself but when the rubber hits the road, I drop my needs like a hot potato for someone else or because I get lazy. Thought. Planning. Follow-through.

Today is day 16 of “The Great Water Challenge”… in fact I am drinking water right now, just so I can say I am! Wish me luck, as I wish you luck on your journey.

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Mother. Teacher. Wife. Graduate Student. Runner. Friend. Blogger.
I am the mother of two beautiful children, my son is six years old and my daughter is two. I currently teach fifth grade part-time and I’m attending graduate school for the fourth time (I know overachiever, or crazy!). Recently I started writing a blog about my adventures raising my son, who has Asperger’s Syndrome. Humor, tears, sugar, and running are how I am survive.
Please check out my blog: http://iknowwhytheycallitaspergers.com/

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My Oxygen Mask Project, Part 2

by Ilene, My Family’s Experience With Autism

I wrote a post for this page about how I need to figure out how to take some time for myself to do some of the little things that we all used to take for granted before becoming parents.  It’s been a few weeks since that post and so I thought I’d show my progress, or lack thereof.

You see, it’s February.  February, 2012 is proving to be all about parenting.  We have had sick kids.  We have had doctor’s visits (both sick and well-child visits).  We’re taking Ballerina to see the developmental specialist.  We are visiting schools to determine the ideal kindergarten placement for both Ballerina and Music Man.  Music Man needs to be potty trained so we are tackling that as well over President’s Day weekend (going hard-core – underwear all day [oooh, that’s going to be a fun weekend]).  We have an IEP Meeting scheduled for Leap Day (February 29) for Ballerina to review her updated evaluations and determine her placement for the next school year.  After that, I can finally take a deep breath.

You see, that deep breath is already planned.  The meeting will be over before lunchtime on that day and my husband is attending that meeting with me.  This past weekend, he received an email containing a pretty good coupon from Cheeburger Cheeburger, a restaurant that we both really enjoy when we want to have a pretty unhealthy meal (that’s just us – you can get healthy there too).  So, that’s what we’re doing when the meeting is over.  We are either going to celebrate the success of getting the placement we desire and the improvements she has made per the updated evaluations or we are going to console each other with a big chocolate shake and the best onion rings I’ve ever tasted.  We may even get chili fries to go with it – forget about the healthier burger!!!!

Sometimes life gets in the way of taking some time for yourself.  You can’t control when your kids get sick and sometimes we have to schedule things for the times that we would like to take a moment and breathe.  It happens.  The important thing here is that we have to make sure we take the time when the moments present themselves.

And on February 29, that’s JUST what I plan to do!!!!!!

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

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

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

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Before I Break

by Nikki

A different, earlier version of me may (would) have considered this past 24 hours to be selfish, a waste of money, and worthy of mounds of guilt. Fortunately, she’s gone – hopefully forever – and in her place is the 40 year old me that understands the value of taking a break before *I* break.

It has been building for a while. There were the normal stresses of the holidays, followed by seeing those extra holiday/winter pounds every time I look in the mirror. And my kids got head lice right around Christmas. I know what you’re thinking. And you’re right. Lice is gross and it’s a lot of work. But, really, I can handle all of that. And then in the middle of January I fell. Broke my shoulder. Yes, it was one of those icy days here in Vermont. But that wasn’t a factor. I fell in my kitchen – tripped over the damn vacuum cleaner cord and crashed into my cabinets. At that moment the real stress began.

I am a single mom. I have 4 kids. I own my own home. And, oh yeah, I am strong-willed and fiercely independent. I didn’t want to ask for help but I had to. Actually, strike that. I didn’t have to ask for help, I had to *accept* help. My mom moved in for a few days without me having to ask. My best friend spent that first, horrendous night with me when I was brutally sick from the meds (and likely from hitting my head) even after I insisted I was fine alone. Other friends made meals and transported my kids and stopped to fill my pellet stove. Without me having to ask. So, yeah, my friends and family rock. But the accepting is very difficult for me. It makes me anxious.

Then there were endless basketball games and homework and kids fighting and the less-than-pleasant, not at all easy to work with ex-husband. And just for the fun of it, life decided to pile on. My daughter hurt her knee and needs physical therapy twice a week, 25 minutes away. My son got sick and we’re still trying to figure it out. The past couple of weeks have been full of doctor appointments, tests with specialists, an ER visit, lots and lots of missed school, and that constant, aching, deep-in-your-bones worry when something is wrong with your child and it may be serious.

Three nights ago I was a wreck. Overtired, anxious, grumpy. My kids were fighting and I felt like I may burst. I texted a friend and said “I don’t want to be a mother tonight.”. This was bad. I put the kids to bed early, sat on my couch, and cried.

I opened my laptop and I booked myself a deluxe oceanfront room right on the beach in Maine. My happy place. I knew that I needed to get away in order to keep myself from running away.

After checking in yesterday I put on extra layers and immediately started walking on the beach. The waves were loud, the wind was furious, and I just let it all go. I stood on the beach alone and I cried the ugly cry. I thought about all of the things that have been making me anxious and I cried for every single one of them. And then I stopped. I gave my anxiety to the waves. The ocean gives me strength, it gives me perspective.

This night away does not erase all of my troubles. They will still be there when I return home later today. But it does buoy me (forgive the sea-related pun). It has allowed me to just be me for a while. I have cried, I have read and slept and treated myself to a seafood dinner and watched The Hangover on cable. I have sat in the over-sized chair for long periods of time just staring at the waves. I have recharged.

Tomorrow it all starts again. The normal everyday rigors of life. And maybe some not-so-normal ones too. But because I valued myself and my sanity enough to escape for a while, I will fight the fight with renewed energy. I will be able to be a better mom to my kids this week because I was good to myself first.

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Nikki is a work-at-home single mom with four kids, ranging in age from teenager to first grader. When life threw her a curve ball, she hit back hard and with a vengeance. She believes that life is what you make of it: you can either sit at home and watch the Oscars in your pajamas or buy a fancy dress at the thrift store and party in style. She has dedicated the last 14 years to creating a better life for her children, and now knows it’s time to create that better life for herself as well.

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Four Letter Word

by Jessa, Real Housewives of NOLA

Mom stands in the bathroom while I run the water, letting it get warm.  Take your things off, I say.  Put them in laundry basket.

Okay, she says.  And stands there, watching the water run.

Mom, I say.  I point to her PJ pants.  Take those off please.

Okay, she says.  She pulls at the hem of her shirt, then stops.

Pants, I say, pointing again.  Off.

Okay, she says.  And stands there, looking at me.

****

Okay.  It’s become a four letter word in my house.

As her mind and memory slip away, Mom talks less and less.  She hears a voice but not the words.  She doesn’t understand – but she doesn’t say, What?  or Huh?  She says Okay.  It’s a small thing, but it’s making me crazy.

Okay.  I hear E talking on the phone – someone on the other end is asking about me, how I’m doing.  I can hear him through the bathroom door, where I’ve stopped, dropping the load of laundry I was lugging, to throw up for the millionth time, in my 25th week of morning sickness.  Yes – she’s okay.  We’re doing okay.

When the doctor called with our amnio news, it was the first word out of my mouth, my auto-pilot response.  Okay, I said.  Okay.

None of this is actually okay.  But there is a knee-jerk reaction, I think, to use this word that means so little.  It’s the “right” response to anything, self-contained and reassuring.  It’s okay – you don’t have to help me.  You don’t have to worry.  You don’t have to do anything – we’re okay.  It’s so ingrained that it’s all that Mom has left – no matter what you ask, she’s going to answer, Okay.

And really – we are okay.  By most standards, most of the time, we’re doing fine.  We’re doing okay.  But when we’re not – it would be nice to be able to say so.

Don’t you think?

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Jessa is home in Louisiana, caring for her toddler and her mom, who has early-onset Alzheimer’s disease. She is pregnant with a little one, due this May, who has been diagnosed with MCADD, a genetic metabolic disorder that claimed her first two babies. She writes about life (when life doesn’t get in the way of writing) on Tuesdays for the Real Housewives of NOLA blog, and sews for her Etsy shop, little pearl quilts (which has been a wonderful Oxygen Mask.)

Her post originally appeared HERE and was posted with permission.

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In Search Of…

by Becky, Mozart, Picasso and A Princess

Last year was a year that rocked our world – almost literally.  I’m sure you’ve heard someone say something like, “She rocks my world,” or “You rock my world,” – meaning that they make your life so much more amazing.That’s not the world-rocking to which I refer.What I’m talking about is more like an earthquake – the world rattles and things get shaken up.  Yeah, that’s what I’m talkin’ about – last year our little world got shaken up. I’ve never been to more appointments in my life. And if I remember correctly, not a one of them was for me.  3 kids went to 12 appointments with the pediatrician, 11 or 12 dental & orthodontist appointments, several appointments to the eye doctor, therapy – and then *more* therapy, developmental pediatrician, audiologist, to get blood drawn.  And those are just the ones I can remember on the spur of the moment. We met new therapists, experienced different doctors, had more things to worry about than any other year before.

I’m tired. That’s actually a step up from exhausted, which was a step up from “can’t-put-one-foot-in-front-of-the-other-one-more-time.” Tired is not too bad!

And then came the new year.  I knew I wanted to tackle this year differently – be more focused rather than feeling so reactionary.  I have plans for this year. I plan to do more than “exist to drive to the next appointment”.  I’ve planned things I want to do.  No real big plans, but last year, I gave up on plans.

I’ve lived through the ups & downs and ins and outs of the last year.

As I consider the year ahead, as I’ve made a few plans (because I’m still too scared to make “many” plans), I’m starting to realize a common thread among the plans.

Peace.

Every plan, every goal I have in mind (the few I’m starting with) deal with peace. I didn’t plan it that way.  I planned to handle this year differently.  But I didn’t realize that, I guess subconsciously, I was looking for peace. Not peace as in “the absence of strife” but more along the lines of tranquility.

I am so eager for the year ahead.  I feel like I can invest more in all of my family, not just in the one who needs everything.  I think because we tackled most everything last year, there won’t be *as* much to do this year. There’s still therapy, there’s an IEP meeting soon, a doctor appointment in the spring, plus stuff for my other two amazing children.  But this year, I know that it won’t be as hectic as last year.

I’m not planning any big projects.  I’m planning to light a candle, drink a cup of tea, knit a little more, listen to some music, laugh a little more, and hopefully spend more time with friends.  I’m planning to sleep more than 4-6 hours each night.

I’m searching for peace because last year it was hard to come by.  I seem to be seeking it out without even realizing it.  I’m looking forward to a dramatic change of pace.  I realize this year won’t be easy and things will come up that I’m not yet prepared for, but I’m planning for peace.

Grab your favorite mug, pour some coffee or tea, sit down, put your feet up and join me. I could use some support in this journey.  You’re with me, right?

Let’s start here: Islesford Dock, on Little Cranberry Island, in Bar Harbor, Maine. This is one of my favorite places – Tim & I have been here twice.  You get there by boat, have a delightful dinner and head back as the sun is setting.  It’s perfect.

 

 

Photo: Mine.

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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!

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Me And My Martyr Syndrome

by Patty, Pancakes Gone Awry

I haven’t had an entire day to myself in 9 months. Heck, I haven’t even had a couple consecutive hours to myself since then.  Instead, I am constantly pulled in multiple directions: the kids need me, I’m expected to help with the PTO, my church responsibilities never seem to let up.  Even the Red Cross has my number on speed dial, so that the term “blood, sweat, and tears” applies to the demands on me in a very literal sense.

Last week I informed my husband that I needed some time off, time away from him and the kids. Time which I could spend however I desired. He readily consented to guard the home front, so I could get away.

I wasn’t entirely sure what I would do with myself.  After all, my town doesn’t boast many entertainment options, and I was in no mood to brave the wintry weather to drive 70 miles to the nearest mall.  By the time Saturday came, I was still at a loss as to how to spend my few hours of free time.  Go to the library?  Sit at the cafe in town? Window shop at Kohl’s?

It didn’t really matter, as long as I spent some time in solitary confinement.

All Saturday morning, we ran around trying to complete errands and take care of the kids.  After many, many distractions and obstacles on Saturday morning, Bil finally insisted I leave the house so I could get my time alone after lunch.

As I readied myself for my outing, Charlotte mentioned that she wanted to come with me so we could have a “Charlotte-Mommy Date,” and for some reason I still don’t understand, I assented and took her with me.  I think I actually was a bit relieved to have some company, even that of a preschooler to keep me occupied.

Though my afternoon was very enjoyable, I don’t know why I wasted my only chance this week at some alone time.  After all that whining and complaining about  how I am constantly at everyone’s beck and call, why did I not run from the house before anyone could notice I was leaving?  Why did I not just say “no” to my daughter?  Why didn’t I assert my right for some independent fun?

I’m really not sure, but I do know one thing:  though it is true that I have many obligations that make free time hard to come by, it’s often MY fault I don’t get to go out alone.  I’m the one to blame!

After some soul searching, I realized that I am a bit of a martyr, though I really hate to publicly admit this.  I like feeling wanted and needed.  It feels good to be the one who knows just how to calm Danny and Charlotte’s overwhelmed senses.  I like that they would rather spend time with me than give me a moment’s peace.  I like being the one who knows where everything is, how the hot dogs need to be cut so as to avoid any tantrums, and how to convince the kids to cooperate for their dreaded therapy.

No matter how much I complain about all those responsibilities, I must, on some level, like being the one in charge.  If not, why didn’t I leave the house alone on Saturday?

And staying at home and complaining is sometimes easier than getting out of my comfort zone and doing something for myself.  It’s easier than figuring out what it is I actually want to do with myself, because apparently, somewhere in the last 7.5 years of parenting, I’ve lost sight of what that is.  Probably through lack of practice.

I have a lot more soul searching to do in order to ascertain why I am not making time for  myself.  Sure, I can blame it on the kids, our lack of money for babysitters and all my other responsibilities, but Saturday made me realize I am not being entirely truthful with myself.

And the more I think about it, the more I realize that my martyr syndrome is not doing anyone any favors.  Not getting any free time is making me a total crank with an incredibly short fuse.  But that’s the least of the problems.  I realize now that I am not giving Bil the opportunity to spend alone time with the kids.  He isn’t getting the chance to be the guy in charge and to teach the kids that there is more than one way to cut a hot dog.  Armageddon will not occur because Bil cuts Charlotte’s orange rather than peeling it.  And my kids need to get that.  But if I am always hanging about, fixing things and butting in, they won’t.

So, this Saturday, I’m getting out of the house.  Alone.  No amount of whining and complaining by the kids will make me change my mind.  After all, it’s for their good as much as mine.

**********

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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Mother, Wife or Slave?

by Fiona, Puddles, Swings and Whatever Life Brings

It’s not that I’m complaining,

But I want my feelings known,

I feel like I’m a servant,

In this place I call my home.

.

The floors just will not clean themselves,

And neither will the dishes,

And no matter how much I rant and rave,

No-one grants my wishes!

.

I gazed into the laundry room,

And saw the mound of clothes,

All thrown in messy little piles,

I didn’t want to know.

.

So I walked into the hallway where,

My children’s rooms all meet,

And stepped on lots of hot wheels cars,

All strewn around my feet.

.

I picked one up and threw it at,

The closest bedroom wall,

And held my breath so I’d not swear,

I wasn’t happy at all!

.

I stepped into the bathroom next,

And saw the grimy bath,

Then noticed all the toothpaste smears

I couldn’t help but laugh.

.

My brain was close to meltdown cos,

I didn’t know where to begin,

There was so much that I needed to do,

And then I saw the bin!

.

It’s though I am the only one,

Who notices when it overflows,

Cos all of them just put more in,

And higher and higher it grows!

.

Next the carpets met my gaze,

They also needed cleaning,

I looked at them and rubbed my eyes,

And hoped that I was dreaming.

.

I decided then to make a list,

Of where on earth to start,

But I needed something to motivate me,

Because I was off the chart!

.

I tried my best to prioritise,

And work out things in order,

But it didn’t work and messed my head,

And caused me more disorder.

.

So I went and turned the kettle on,

And took a headache pill,

And vowed to do it later cos,

It’s time for Dr Phil :)

.

**********

Fiona lives in a large city in Australia with her husband ‘Mr Patient’ and her 3 lovely children: daughter ‘Ella’ is 12 and their boys are: ‘Harley’ who is 8 and ‘Lucas’ who is 5. Both of the boys are diagnosed with Asperger’s. She writes two blogs, one named “Wonderfully Wired” about her family, and a new non-autism blog named “Puddles, Swings and Whatever Life Brings“, where she is rediscovering her inner child.

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

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