Monthly Archives: January 2012

doing

by Jess, Diary of a Mom

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I tried hard to explain it to Luau last night.

“It’s so odd,” I told him. “In so many ways, I feel so incredibly close to this woman, and yet we’ve never met. We’ve never even spoken!”

He’s heard this refrain before – I’d not be surprised to hear him add ‘ad nauseum, dear’ – my amazement at these friends in the ether – after so many years, these true FRIENDS.

But today, it was one of those friends that made all the difference. So I tried to explain.

“She took a risk,” I said. He didn’t respond, waiting for more. He knows his wife. “An emotional risk. She stepped right over boundaries, somehow knowing that she could. She TOLD ME what to do. She sent me a velvet-gloved btch slap, signed with lots and lots of love.”

I stopped for a moment, hoping the import of this was getting through. “I don’t know how to tell you what it means to me that she would do that.”

“Oh, yes, it was very nice of her to take the time,” he said.

No, damn it! It was much, much more than that. I wasn’t going to give up. I needed him to understand why this mattered so much. I had to find a way to explain.

Friends and teachers and mentors come in so many forms. And sometimes one of them is simply willing to say, “I think I have something to teach you.” That’s not easy. In fact it can be really, really hard.

I told him about the e-mail that I got over the weekend from my friend Carrie. I told him how when I’d first read it, I was caught on my heels. I told him how I’d begun to make excuses. “Oh,” I thought, she just doesn’t see how much I DO take care of myself. Well, of course she’s worried; I don’t show the world that incredibly selfish side of me that spoils myself rotten! For heaven’s sake, I just don’t write about all of the things I do for myself!”

I began to list them in my head – the clothes I buy – the cars, the shoes, the cosmetics, the sunglasses, the shoes (yes, I said that twice – trust me, I buy myself a lot of shoes). “She just doesn’t hear about all of that,” I thought.

I forced myself to stop. To just STOP. I’d made a list of all the things that I do for myself and the list was comprised completely of THINGS that I BUY for myself. Ouch. BUYING for myself is not DOING for myself. Wow.

I spend an awful lot of time trying to ensure that my girls grow up knowing what matters. I teach them that THINGS don’t matter. Of course there are things that we need and things that help make life awfully comfortable,  but what kind of mother am I if I set the example for my kids that they should value THINGS over themselves?

I constantly tell them that making TIME for those that we love is the greatest gift we can give one another. But what about making time for ourselves? If we value ourselves, then don’t WE deserve our own time too?

‘Yes!’ said the wake-up call from this dear friend who saw past my line of crap and gently, lovingly made me confront what’s underneath. No matter that we’ve never met, nor even spoken, she knew. She wrote,

… it’s okay not to know. It’s okay not to be “up” and “on.” It’s okay to be pissed. It’s okay to be overwhelmed. It’s okay to be tired. It’s okay to try your hardest and have it not be “enough.” It’s all okay. What is not okay is to ignore yourself. You will pay the price (dearly) which will inevitably “cost” your children. The social worker was right, “Take care of yourself first.”

I think that’s what I’m called to reiterate.

Take it from me … The price of not looking out for yourself is too high. Don’t pay it.

Those neck pains? Address.

The fatigue? Treat.

The tired of being tired, tired of being up and on. Listen to that.

And don’t forget that the love. you have for others, must be extended to yourself, too.

Reading it again just now I was brought to tears. Yes, Carrie, YES! I can’t be the only one who needs to hear this. I just can’t, can I?

We need to take care of ourselves. We have work to do. For our children, for ourselves, for each other.

I went and took a tour of a gym yesterday after work. It’s quiet, relatively private, out of the way. I stopped off after work and took my time walking around. The world did not implode in the time that I was gone. My children did not forget who I was because I came home a little later than usual. I will be joining that gym today.

An hour a day. ONE HOUR. One 24th of the day, I am giving to myself – adding it on to my work day. I’m downright giddy – energized.

Back in May, I wrote a letter to a friend who is new to this club of ours. I wrote,
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

My internal guide had fallen silent. She was preoccupied with three thousand other things. I needed a reminder. I needed a friend to say, “Enough.”

I have no idea how to thank her.

ed note .. thank you, carrie for graciously allowing me to share our conversation. i am so grateful for your wisdom and your friendship.

**********

Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters – ten year old Katie*, an utterly fabulous typically a-typical fifth grader, and eight year old, Brooke*, a loving, talented, hilarious third grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.

This post was originally published on her site and re-posted here with permission.

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Black Holes and Gravitational Pulls

by Ellie, Tasting the Colors

The universe is trying to tell me something.  Or, at least the blogger universe is. I follow a handful of blogs written by fellow autism/ special needs mommies. Oh, and one written by a daddy.  In the past few days, most of them have had posts relating to one topic.  Call it coincidence.  I think it’s bigger than that.  I think it’s God telling me I’m not alone.  So I add my own blog post to this common thread circulating around the blogger community, in the hope that someone else, perhaps even you, will read it and know that you’re not alone either.

I’m not a big fan of the whole “New Year’s Resolution” idea.  I usually skip them–I mean, what’s the point in proclaiming something that is only going to result in a guilt-induced overindulgence of that something when you mess up and do (or don’t do) that thing you swore you would (or wouldn’t) do this year? Yeah, so I skip the guilt and just don’t even resolve to do anything new or different or better in the new year.

But this year, I felt compelled to make a “resolution,” if you will.  Not out loud, mind you.  Just in my head.  Well, and to my husband, who looked at me a little funny and reminded me that I don’t do resolutions.  But I made one:

This is the year I place my own needs at least as high
 on the triage charts as the needs of the rest of my family.

What does this mean, you ask?  Well, obviously, I want to eat better and get more sleep and try to exercise.  I want to get haircuts when I need them, and buy new makeup and clothes that are actually stylish and fit me right.  I want to replace my threadbare undergarments, because we all know that moms stop buying themselves underwear when they start buying it for their kids.

But I took the biggest and most important step towards the higher-valued me today.  I went to my doctor.  I told her in stumbling, shaky words how everything just feels so big and stressful and out of control right now.  How this veil has been pulled over my days, making everything seem just a little blurry and out of focus, tripping me up as I stumble through the days and nights of autism, anxiety, unemployment, multiple jobs, health concerns, education concerns, IEPs, diets, seizures, and ADHD.  How I am annoyed and angry more often than I am sad, but when the sadness hits, I just want to give in to it and allow myself a total breakdown.  Which makes me more angry.  How I am taking it out on my kids–how I can’t stay calm when Munchkin relies on my calmness to keep him from flying off the handle.  How I can’t keep Squirrel organized because my own thoughts are a jumbled mess.  How I can’t muster the energy to play with them or draw with them or listen to them talk, and how they know I’m not really all there even when I try.  How my husband doesn’t know what to say or do, but knows enough to support me when I say I think I’m depressed again.  How I can’t fall asleep at night, and when I finally do, I can’t stay asleep.  And how I’m SO TIRED during the day.  How I’m not eating much, and what I do eat is not healthy.  How I don’t want to leave the house, but the thought of just staying here all day surrounded by this cloud of heaviness makes me even more anxious.  How I think I’m just really stressed, but it’s about to cross the line into a serious depression, and I think I need to go back on antidepressants before we get all the way across that line.

I poured all this out, then I took a deep breath and looked up at her hopefully. And after asking some questions and clarifying a few things, she agreed that I have more than the average amount of “stuff” on my plate and I am certainly a little depressed and a carrying way too much stress.  So I left there with a prescription and a referral to a counselor to talk about how to deal with this stress, since none of it will go away anytime soon.

And tonight I feel a little bit hopeful.  And grateful to all those honest moms and dads out there who are willing to share their stories and expose themselves to help another.  Who aren’t afraid to say when they need help, whether it comes in someone to talk to, or a little blue pill, or any other form.  Thank you for being brave enough to write what you’re experiencing, and for pushing me to realize where I’m headed before it gets too bad.

If you’ve never dealt with depression, you can’t understand the way it grabs your mind and takes over.  It taints the way you experience things, the way you understand things, the way you feel things.  At first, it tells you that you’re strong enough to deal with anything, that you don’t need any help, that you can pull yourself up if you just try harder.  And all the while, it’s slowly pulling you into its gravitational field.  And at the center of that field is a big black hole that will destroy you.

I’ve dealt with anxiety and depression since I was a teenager.  This isn’t new to me, but sometimes I try to be too independent.  Depression is too strong a beast to be fought alone.  You’ll get caught in its gravitational pull and start spiraling towards the center of the black hole.  Do you know what happens to stars in outer space when they get too close to a black hole?  They explode.  They go out in a glorious display of color and light, but then they cease to exist.  I’ve been really close to that black hole before.  Close enough to think about hurting myself, hurting my children.  Close enough to break down sobbing on the side of the interstate, afraid of the demons in my head telling me how much easier it would be if I just made it all stop.  Because that’s what Depression does–at first it tells you that you’re fine, but after awhile it changes its tune, and starts to tell you how hopeless and futile life is.  Those were some really dark days, when I was staring right into the vortex of that black hole, waiting for it to suck me in and make me explode.  I never, ever want to go back there.  I want to grab all the help I can get until that veil covering my life right now starts to lift and I can cope with all the things life has handed me again.

And if you feel any of these things, please talk to someone.  Your doctor’s a good person to start with.  Depression takes many forms.  For some people, it’s crying jags and melancholy that won’t lift.  For me, it’s anger and annoyance with every little thing, interspersed with an utter indifference to life. It’s body aches and headaches (I actually wondered if I was fighting a flu bug for a few days!)  It’s insomnia and fatigue.  And don’t be ashamed because you aren’t actually Supermomma.  No one else is either.  We deal with a lot just  trying to balance spouses and children, doctors and therapists, schools and daycares, concerns for this day and for the ones to come.  Even the super mommas need someone to keep them from spinning out of control sometimes!

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Ellie is a mom, a wife, a teacher, and a special needs advocate trying to make the most of every moment I’m given on this journey called life. I’m married to a funny and easy-going man, who balances out my anxiety and sarcasm perfectly. We have two very special children, who also happen to have some “special” needs. “Squirrel” is our 9 year old daughter. She is artistic, creative, and spirited. She lives with Sensory Processing Disorder, ADHD, and Anxiety. “Munchkin” is our 6 year old son. He is hilarious, sweet, and cuddly. He lives with an Autism Spectrum Disorder known as PDD-nos. Together, we’re on a journey to see the hand of God through the joys, the struggles, the sadnesses, and the discoveries of living.

This was originally published HERE and posted here with permission.

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A Change (Will Do You Good)

by Alysia, Try Defying Gravity

It’s no secret.  I fear change.

When we moved to a new town six years ago, I was a wreck.  How would I find the bank?  The cleaners? Would we be close to a Dunkin’ Donuts?

(note: I live in New England.  We’re always close to a Dunkin’ Donuts)

On the last day of school, I’m more anxious than my kids about their new teacher assignment.

And don’t even get me started on the “Timeline” function on Facebook.  Shudder.

But lately…life started getting more, um, complicated.  I knew I had to do something.  Change something.

I was drowning.  I couldn’t breathe.

Making a major life change though?  Scares the crap out of me.

I can’t make resolutions because I always fall flat.  They are always bigger than me, bigger than what I can take on.  Eat better.  Join a gym.  Get more sleep.  All lofty and important goals.

All completely unattainable at this point in my life.  If these were my goals, I would fail.

Not quite the outcome I need.

So instead of making a CHANGE, I’m making some changes.

Little “c”.  And plural.

For me, I’m talking about things that make me feel better about myself.  Bringing me back to me.

Like wearing my contacts again after 4 years.  My one vanity.

Or maybe taking a shower every day.  Ignoring the dishes while I have my coffee hot, not re-microwaved for the fourth time.

Wearing socks that match.  Getting dressed.  Taking the long way home when someone else is with the kids.

Saying “yes” when a friend asks to go out for a drink after the kids are asleep.  Saying “no” to volunteering too much.

Watching a show like “Downton Abbey” so I can feel “in the know”, even though there are 3 baskets of laundry to put away.

To the average person, these may seem really silly.  Like really, who can’t match their socks and shower every day?

Um, me.  Right now these are huge achievements for me.

Little little changes.  Baby steps.  Big emotional payoff.

I can do these things.

And once I feel better – feel accomplished – then I can take on the bigger changes.  The ones with a capital “C”.

One step at a time.

And I am no longer drowning.

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Come check out our Facebook page where we are cheering people on every day with the changes and CHANGES parents are making.  Things like:

“I am going out with some neighborhood moms tomorrow night.”

“Today I took a shower so long, that I ran out of hot water! I can’t remember the last time I did that!”

“Putting my favorite pajama pants on, wrapping up like a burrito in my favorite blanket and putting my oxygen mask on.”

“My 02 moment: shopping for myself by myself, and not at the grocery store.”

“This is why I play roller derby. There is nothing more therapeutic than hitting your friends for a couple of hours.”

“finding time to work out, makes me feel better about myself, so i’m not so flustered at home!”

“Just took an intense, hilly hike for about 40 minutes. Worked up a good sweat.”

“Today I am going to take a short nap. It has been an excessively long day.”

What will you share with us today?  What will can you change that will help you feel like…you?

I’ve been thinking ’bout catching a train
Leave my phone machine by the radar range
Hello it’s me, I’m not at home
If you’d like to reach me, leave me alone

A change would do you good
A change would do you good
Hello, it’s me, I’m not at home
If you’d like to reach me, leave me alone” – A Change (Would Do You Good)

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Lost and Found

by Kristin, Running to be Still

My friend wrote a post last week that I haven’t been able to stop thinking about. You can read it here. I’ve read it at least 20 times and keep trying to comment on it, but then delete the comment each time.

The comment I so want to leave is “Exactly”.

Before I was an autism mama, I was a soccer player. A landscape designer and gardener. A scuba diver, camper and snowshoer. A play-pool-at-a-fun-dive-bar friend.

One day I was all those things, and then the next I just wasn’t.

Because starting that next day, it was 20 hours a week of therapies. Of endless waiting rooms. Of overwhelming paperwork and IEP meetings.  Of pouring over books and websites to learn everything possible I could think of to help my child, while at the same time trying to actually take care of my child. Both my children.

Those needs are unrelenting. They won’t wait for a coffee break or a private shower. They certainly don’t leave time for a Doctor’s appointment or gym visit. I felt selfish thinking about doing such things, because my children needed me to do things to help them. I was too tired to do them anyway. Why bother adding more to my list of places to go and things to do? I convinced myself I’d do something for myself when things calmed down.

Things didn’t calm down.

Autism took over my life, and all those other bits that make up who I am got buried. Buried so deep I didn’t even try to find them anymore. After awhile I just stopped thinking about them.

They were long lost, and I felt like I was losing myself.

I realized I needed to find some of those things, the ones that made me feel good about myself. Luckily, that realization came the same week I was to go away on my first girls’ trip in over 15 years.

We went to a friend of a friend’s for a night down the Cape. 12 of us. All moms of kids with special needs. All moms who needed a break, to relax. To breath. To laugh.
This was my Facebook status update on Saturday night:

Playing pool in a dive bar in P-town. Life is good. And amazingly familiar…

And then, Sunday morning we all just sat around together in the living room in our pajamas, drinking coffee and telling stories. And laughing.

I felt like I could breath again. I couldn’t even believe the difference it made, just to get away and be myself again. Just to hang out with friends and not be on guard. To find that play-pool-at-a-fun-dive-bar part of me that was lost. In bringing that to the surface, I feel like I found where all the other bits of me have been hiding.

5 days later, I still feel renewed. I’m pulling from the energy I got from being with my friends.

I know I’m not going to be doing all those things I used to on a regular basis. And I’m OK with that. My life is so different than it was way back then. I wouldn’t change it with anyone in the world. But if I can remember those things and how they are also part of who I am, then I can pull them out when I want to. When I need something to draw strength from.

I made that doctor’s appointment. I called a few people about doing their gardening. I’m going to the Flutie Bowl Monday night with these same friends.

I’ll do it little by little.

Note: The women from the post I linked above are calling this The Year of the Oxygen Mask. The name couldn’t be more appropriate. We need to make sure WE are healthy – physically, emotionally, and mentally, in order to be able to help our children.

The Oxygen Mask Project website tells stories from parents, like you and me, who are taking steps to make sure they take care of themselves. Visit there to get ideas or strength. 

There is also a Facebook page where you can get support and cheer each other on. It is a place where you can tell someone you took a walk and it felt great, and you will be understood and applauded. It is a place you can simply write “help”, and you will receive ideas and encouragement from people who get it.

You can also find support on twitter by following @OxygenMaskProj and by using the hashtag #yearoftheoxygenmask.

I know it is hard to make changes if you are doing it alone. Please tell someone if you are struggling or feel lost. Do something for yourself. You’ll be amazed at what a difference that something can make.

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Kristin lives in Boston with her incredibly patient husband and 2 amazing boys. James, 8, is charming and loyal, and makes friends one video game at a time. He also has an autism spectrum disorder. Johnny, 6, is often called Johnny Drama because of his clever wit and flair for the dramatic. Kristin is active in BPS’s SPEDPAC, trying to provide a voice to parents of children with special needs. In addition to keeping her oxygen mask on, her main goal for 2012 is to help her group of incredible autism mamas develop a resource center for local families who have children with autism. She writes about her family’s journey at http://runningtobestill.blogspot.com.

This post was published here with her permission.

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Taking Care of Yourself

by Elise, Raising Asperger’s Kids

One of the most important subjects concerning your child is you. You must take care of yourself. It was the first thing the therapist said to me when my oldest was diagnosed. You will do your child no good if you are unhealthy, stressed and depressed. I guess she had noticed the state I was in. Years had gone by without an understanding of what was wrong. He had had so much trouble in nursery school, the pediatrician had no idea what she was dealing with and the public school system where I was had bullied me into removing him from the kindergarten class. I couldn’t find a private school that would take him.(15 years ago the rights of disabled children weren’t so well known and I had no idea what he was entitled to.  Today it is a different story. Not only do I know the law, but there are the websites, chatrooms, and info boards to turn to. Thank God for the internet) I was a wreck.  Part of my problem did get solved because we moved to a school system that followed the law without giving the parents a hard time. (Yes, the debt we incurred was enormous. But at times, life is what it is and anyone who tells you to save, save , save never had a special needs child) .

Here is a list of items you should always be aware of for yourself:

1. EXERCISE. This reduces stress. If this can help then maybe you won’t have to do the anti-depressant route. I can’t tell you how many moms I know live on SSRIs.

2. NUTRITION. This is not just for your child. You need a balanced diet to remain healthy. Eating the left over grilled cheese will not give you the strength to work through problems and confront the issues you face.

3. DOCTOR VISITS. Make sure you see your doctor. Go to the gynecologist, dentist, family doctor for regular check-ups. If you do not catch issues before they flare up you will be of no use to your child. Remember, the teeth are the root of your body. Tooth decay has been linked to everything from headaches, to heart disease. Heart disease is the number one killer of women.

4. HOBBY. Have a hobby. Something that makes you happy. I had been crocheting, then took up needlpoint and now I knit. The crocheting and knitting were very productive. I make blankets for Project Linus www.projectlinus.com. This is a nationwide organization which gives out blankets (crochet, knit, quilt, etc) to children in hospitals, foster care or to TAPS  www.TAPS.org  which is a support organization for children whose US military parent has died in war. I can’t tell you how gratifying it is when I get the newsletters telling about the thousands of blankets given to families for their children. It also has the added benefit of keeping me grounded and recognizing what is really important.

5. GO OUT. Go out with your spouse or friends. I see friends for lunch. I meet my sister for a Saturday without the family and my husband and I have Home Depot dates. It is important to do something fun without the children. It is also important for your marriage. I know marriages suffer terribly when a child has this disability. I also know that I am one of the lucky ones with a husband who could eventually deal with his children’s problems and understood that it is about them and not him. But we also do not go out to dinner, we rarely see a movie, we spend time together running errands on the weekend. It is the time that counts, not what you do.

I also never made too much out of occasions. He has the type of job that he basically works 24/7 and would work 27/8 if that was how the world kept time. Make sure that your emphasis is on what is really important. How does he treat you, does he just hand over his paycheck because you pay the bills and take care of the children, is he there for the children- spending what little time he has with them helping them with issues,  does he understand what he needs to do for them and most of all does he make sure that his side of the family does what the child needs and gives them no choice in the matter. Being home for an anniversary instead of the office is not really what is important.

6. PRIORITIES. Keep your priorities straight. Find support groups either in your town, school or county. Join a religious center for support. Sometimes they have support groups for parents of special needs children or there may just be someone to talk to. Check into the PTA in your school district, they may have a special needs network. Talking to others will help you remember what is truly important during some of those times of sadness.

7. VOLUNTEER. Help someone else. ( Project Linus, helping with the PTA, going to the local hospital, united way, junior league, religious charities, etc) This will also give you a good perspective on others realities. It never hurts to get a swift kick in the butt when you are feeling sorry for yourself.

8. ASK FOR HELP. It is not a sign of being an inadequate parent to ask for help. Ask a relative, friend, husband to watch the children for awhile while you decompress. Ask the school for ideas and get a doctors idea for help and support. Go to the county or social security to see if you qualify for services. Find out what is available in your area for special needs children  either from the county health office or the local autism chapter.

9. WORK. Most women have to work, especially with the costs associated with special needs children. You know what. It is ok. It is also ok to enjoy your work. It is also ok to be glad to be at work. It is also ok to acknowledge that it is not easy to organize everything your child needs while you are at the office. It is ok to say this is hard. It is ok to acknowledge that we have been fed a load of bunk about having it all at the same time. No-way no-how especially with special children. Acknowledge that you are doing your best, that this having it all is just nonsense and that you are more than adequate, you are great!

Lastly and most important: it is ok to be scared out of your mind.  Acknowledge it, embrace it, defeat it! Yes you can!

You are important. Don’t forget about your self.

Until next time,

Elise

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Elise Ronan, a pen-name, blogs about life raising her two boys, now young men, with aspergers. You can find her blog Raising Asperger’s Kids at http://asd2mom.blogspot.com or follow her on twitter @RaisingASDKids.

This post was originally published on Elise’s personal blog, and was posted here with her permission.

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Tramps and Bums

by Rachel, Welcome to Stim City

In what space are you the most real?

Is it among friends?

Among strangers?

When you stare into the mirror?

I found myself – my one true self – out in the Atlantic Ocean. Not when I looked at my reflection in the water but when I looked into the faces of five amazing, strong and very real women.

We ranged in ages from 36 and up. All of us mothers, some grandmothers. Years of life experiences that unfolded at the dinner table each night. Like velvet petals on a summer rose – each one delicate in its beauty but anchored hardily at the sepal. Withstanding torrid drought spells and torrential rains, hard times come and gone and come again.

But there were good times and fast stories, too. “Tramps and Bums!” Oh, how these women told stories. We were strangers as we first took our seats at the table, casual introductions as we laid our napkins in our laps as ladies do. Four days passed. We excused ourselves and parted ways as lifelong friends. Only soiled linens abandoned at the table were the wiser. “He took it out!” I hadn’t laughed so hard or felt so connected to my own being in so many years.

I was witness to dolphins racing freely through the wake of the ship. I ate alligator. Have you met me? I quiver when my SGM stocks our freezer with venison. I lay in a hammock for hours swinging in the wind, wrapped in a soft robe and feeling the sun keep watch over me. I ached for my babies but I soaked in quiet tears of relief. I longed for my husband’s arms to hold me, his lips to welcome mine but I knew it was better this way. A space to be real. To remember what real was.

And then I was home.

reentry [ree-en-tree]

noun, plural –tries

1.      an act of reentering.

2.     the return from outer space into the earth’s atmosphere of an earth-orbiting satellite, spacecraft, rocket, or the like.

3.      Law. the retaking of possession under a right reserved in a prior conveyance.

4.     Also called reentry card. In Bridge. a card that will win a trick enabling one to regain the lead previously lost, especially the lead from a particular hand.

I am ready for reentry this time. Ready to reclaim the real me.

More than a mother. More than a wife. More than an advocate.

The real me.

The girl who sang her heart out every chance she had. In the shower. In the car. In front of a thousand people.

The carefree young woman who drove her Jeep fourteen hours straight from Connecticut to Florida to sleep on the beach because she could. Three times in one year.

The businesswoman, the protector and the born-again college student.

It was an epiphany for me. Never again shall so much of the everyday separate me from all of the ingredients that have been folded in over the years to make me the recipe I am. 100% Real Me.

Many thanks to the amazing women I shared my brief reprieve with. We as mothers and wives who have sacrificed for our families must remain vigilant to never lose our way back to the raw, real individuals we were before -

“Tramps and Bums!”

Cheers,

Rachel

**********

Mrs. Sergeant Major, Rachel Kenyon, is an Army Wife and Warrior Mom of two kids, one with autism and 4q Deletion. Her husband is an Active Duty Infantry Command Sergeant Major. Rachel writes about military life and special needs parenting at StimCity.org.  She also advocates for the 1 in 88 military dependent children with autism and is currently working to gain support for HR.2288 The Caring for Military Kids with Autism Act (CMKAA) – a federal bill which would make autism therapies a part of standard military insurance. Rachel and the Sergeant Major (SGM) make their home in Connecticut.

This post was originally published HERE and posted here with permission.

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Time For A Change

by  Mom to Boy Wonder

It takes strength to survive;
It takes courage to live.
Strength and Courage
~David L. Griffith
The winds of change are blowing wild and free.
Make You Feel My Love
~Bob Dylan
4 years ago, Boy Wonder was diagnosed. All we’ve done is survive since then. There’s been ups and downs. There’s been joy and sorrow. There’s been 2 steps forward and 1 step back but we’ve been in crisis mode. We can’t stay here anymore. I can’t stay in crisis mode anymore. I also can’t be Mommy or Autism Mama all the time anymore.
I will never be the blissfully ignorant, happy go lucky person I was once upon a time. The past 4 years have taught me too much about judgments, incorrect perceptions, empathy, acceptance, patience and love. We aren’t who we were pre-diagnosis.
 So I’m choosing to make changes. I start college this month. I’m looking to go back to work.  I’m practicing forgiveness of myself and others. I’m thinking seriously about what would make me happy no matter what other people may think.
It’s time to stop surviving in the land of what could’ve been and time to accept what is and go after what would make all of us happy. Everyone deserves happiness. I just have to let go.
**********
Mom to Boy Wonder has 3 small children who range in ages from 2 to 6 years old. Her son was diagnosed with autism at the age of 2. She is returning to school in order to become an advocate for other special needs parents. In November 2011 she ran the ING NYC Marathon in support of Autism Speaks and is already signed up to run again it again this year.  In her spare time, she blogs about life as a self-described Autism Mama, and enjoys reading, learning about wines, traveling, her kids’ nap times and watching television that is not Dora the Explorer. Her deepest belief is that you do not know what you are capable of until you try.
This post originally appeared on her blog HERE and republished with her permission.

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avalanche

by Jess, Diary of A Mom

**

I never seen you lookin’ so bad, my funky one

You say your superfine mind has come undone

I can tell you all I know, the where to go, the what to do

You can try to run but you can’t hide from what’s inside of you

Any major dude with half a heart surely will tell you, my friend

Any minor world that breaks apart falls together again

When the demons are at your door

In the morning they won’t be there no more

Any major dude will tell you

~ Steely Dan, Any Major Dude

**

My sweet friend,

I know how much you’re hurting. I so desperately wish I could lift you from this place.

You’re not alone. Please hear that. Really, truly HEAR it.

YOU. ARE. NOT. ALONE.

I say that because I know how lonely that place feels. Especially when the people within arm’s reach don’t get it.

But I do. I get it. I promise you, I do.

We push and we push and we push and God, we push some more, don’t we? And sometimes we have absolutely no idea how we can possibly keep pushing. Sometimes we can’t.

Do you remember Sisyphus from the Greek myths? Poor schmuck was punished by the Gods – for what I don’t remember – and his penance was that for the rest of his life he was to push a boulder up a hill. Every time he pushed it, he managed to get just a little bit closer to the top. And every time he got incrementally closer than he had on the last run, the damn thing came rolling down. EVERY. SINGLE. TIME.

So let’s review – Herculean effort. Barely perceptible progress. Dramatic fall. Dust off. Start again.

Sounds familiar, doesn’t it?

And sometimes – sometimes – the pushing is just too damned much to bear. And we sit for a moment. We try to breathe. And then we find ourselves paralyzed at the bottom of that hill.

We chide ourselves because we know better than to stop moving. It’s the mantra of this club, isn’t it? Never Stop Moving. So we slap a palm to our forehead and shout to the heavens, “How could I have let myself stop moving?” And the guilt and the shame cement our feet to the ground. And now, no matter how much we may want to, we CAN’T move.

And then it starts. A pebble here, a pebble there. The business of life begins to fall to the ground. A rock and then a bigger rock. The stuff that simply must be done to keep ourselves, our family, our children moving forward. The ground is littered with What We Just Can Not Do Right Now.

And while we try to catch the falling rocks, there’s still this business of the godforsaken boulder. And the feet cemented to the ground.

There’s a low rumble, then a deafening roar as the avalanche begins. And really? There’s nowhere to hide. We duck and cover the best we can.

***

We all have moments that flatten us, my friend. And sometimes those moments are days and sometimes those days are weeks. But when the weeks turn to months and the rocks are piling up so high that they are threatening to destroy us, it’s time to get some help. Some REAL help.

And I know that there’s no easy fix. I know what it means to ‘get help.’ It means sifting through the rubble. It means facing down the demons that you’ve worked so hard and for so long to stuff away. And it’s terrifying.

I get that. Far more than I’d like to admit. I get that.

But here’s the thing. You’re facing down those demons every day whether you acknowledge them or not. They’re riding shotgun, sister. Always. And they’re sucking the life out of you.

Saying their name doesn’t make them real. They’re already plenty real. So say their name. Stare them down. Take back the power that you’ve given them. Release yourself from their strangle hold. It’s time.

You can do this.

First thing –  Step out of the shoes that are stuck to the ground. Walk away from the guilt and the shame. You don’t need them anymore. You never did.

Ask for help. REAL help.

Walk in and say, “I’m ready.” If you don’t feel it, LIE.

Because the rocks don’t stop falling. The business of life simply doesn’t cease. The boulder has to be rolled up the hill. Our kids demand that we be whole and healthy and present.

And we deserve a life. A life with joy. A life with manageable demons.

It’s too much to do alone. Those dang demons are well-fed after all these years. But it CAN be done.

I’m here.

I’ll help in whatever way I can. I’ll even keep an eye on the boulder while you do what you need to do.

Please.

Take care of you.

With love,

Jess

Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters – ten year old Katie*, an utterly fabulous typically a-typical fifth grader, and eight year old, Brooke*, a loving, talented, hilarious third grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.

This post was originally published on her site and re-posted here with permission.

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Help

(this will be a post in two parts.  Probably.)

It was about this time last year.

I couldn’t breathe.

I would feel it wash over me, covering me, suffocating me.

I couldn’t move.  I couldn’t get dressed.  I went through the motions of feeding and clothing the kids. I lost all interest in everything.

I cried. A lot.  And was angry.

I didn’t know what it was.  All I knew was that this wasn’t me.

It would come.  And then it would go.

I would try to describe it to Tim but I couldn’t even find the words.  We agreed that I would talk with my doctor at my annual checkup.

**********

I sat on the table in the doctor’s office, trying to describe what was going on.

“My hair is falling out.  I’m not sleeping.  I’m just feeling…out of sorts.  Maybe it’s my thyroid?  Or hormones out of whack? My youngest is two, maybe my body never bounced back?”

I couldn’t say what I needed to.  I’m completely overwhelmed.  I can’t breathe.  I cry all. the. time.

“We can run all those tests,” she said. “We can rule out a thyroid or hormone level issue.”

Then she looked right at me.

“You’re a mom in your late thirties.  You have three young boys, two of them with extra needs.  You aren’t sleeping, you aren’t exercising.  I bet everyone else’s needs come first.”

I nodded and looked at my feet.

“I bet there are moments when it feels like a wave coming on.  You’re okay one moment, and not the next?”

Again, more nodding and feet looking.

“I can prescribe something for you to take when you start to feel like that.  But you need to start taking care of you.  Exercise.  Even if it’s just running up and down the stairs when the kids are in the shower.  You can’t do it all.  No one expects you to.”

I walked out of there promising to think about the meds.  I promised to start taking care of me.

That was a year ago.

**********

I’ve been able to manage the wave.  So far.

I can feel it coming.  My body tenses, my chest constricts.  I yell more.  I eat more.

Sometimes there are triggers.  A call from school.  A playdate that goes bad.  Or good.  A doctor’s appointment.  A developmental evaluation form.

I know now that it will be short-lived and it will pass.  So far.

**********

But I still haven’t been able to do the things for me.

I have three kids who are as different as day, night, and afternoon.  They all have needs.  They all have doctor’s appointments, therapy appointments.  All need 100% of my time all the time.

I give that to them and more.  And by the end of the day, there’s nothing left.

Tim described it like a raisin.  I start the day like a grape.  And slowly all the juice inside dries up, leaving me like a raisin by bedtime.

I have to get the juices back.

I’m not even talking spa vacation.

I’m talking eating lunch sitting down.  Remembering to shower.  Changing into pajamas before falling asleep.

Reading a book.  Watching a movie with my husband.

A friend of mine proclaimed this the “Year of the Oxygen Mask” for her, meaning that it was time to remember that we need to be able to breathe if we’re going to help our kids stay afloat.

It’s the “Year of the Oxygen Mask” for me too.

Step one: making another appointment with my doctor.

**********

If you are feeling overwhelmed, panicked, paralyzed…remember that you are not alone.  Read this brave post from my friend HERE.  Or this from another incredible friend HERE.  Or this raw, honest post from The Bloggess here.

It’s okay to talk about it.  In fact, it’s necessary.

Reach out. Get help.

Put your oxygen mask on now.

When I was younger, so much younger than today,
I never needed anybody’s help in anyway.
But now these days are gone, I’m not so self assured,
Now I find I’ve changed my mind, I’ve opened up the doors.

Help me if you can, I’m feeling down
And I do appreciate you being ’round.
Help me get my feet back on the ground,
Won’t you please, please help me?

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like, I’ve never done before.” – Help by The Beatles

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