Tag Archives: depression

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

by Tim, Both Hands and a Flashlight

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

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

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

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

There has to be a better way.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This post was originally published HERE and used with permission.

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My Way Back From Depression

by Kathy, kissing the frog

Last week, I was out of my little white happy pill.  The pharmacist had to call my doctor, and I knew they would play phone tag all week.  I’ve been out of my Lexapro before, and I knew what was going to happen…

One morning, I wake up feeling sad for no apparent reason.  A sadness that has nothing to do with any tragedy I’ve experienced.  I’m never sure why I am feeling sad, but I sink into it.  It lays over the top of me for a day or so, until it worms its way deep into my heart and mind, festering, slowly turning into anger and despair over every. little. thing.

Anger at all the things I can’t seem to control.

And then it resides there, refusing to leave, affecting my every thought, every action.

My patience with my sons quickly wears thin.  I snap at the smallest mistake, yell over the tiniest indiscretions.  I take out my anger and feelings of worthlessness on them, innocent victims incapable of fighting back.  I scream and yell and say regrettable things that I know I will never be able to reverse.  

I yell at my four year old to ‘Hurry up!!’ We are late for preschool again.  We are always late.  Why can’t I ever be on time for anything?

The baby is getting into everything, and I yank him away making him cry.

With every angry reaction I think,  ‘I’m a horrible mother.  This is how they will remember me.’ This plunges me further into my pit of self-pity and negativity.  I can’t believe how quickly I have descended this time.

When Hubby asks me about my day, I don’t even want to talk or even let him look at me and see the sadness and anger in my eyes.  I am ashamed of myself.

My head is jumbled.  I can’t think.  I can’t remember anything.  I can’t organize my thoughts.

I haven’t written my weekly post for Her View From Home, and I can’t think what to write.  I write sentences that make no sense and then delete them in a frustrated and angry tirade.  I know I should write a new blog post, too.  But why should I?  No one reads it anyway.  Every e-mail I get from other blogs I subscribe to makes me angry and depressed.  Why does this blog have so many followers?  Why did everyone comment on this post when no one comments on mine?  It defeats me.  I think, ‘I am stupid to think that I can write, that I have talent, that I have anything to say that anyone wants to hear.’  I resign to just give up writing altogether, thinking only of the pieces that have been rejected.

‘I am a miserable failure at everything.’

I don’t return phone calls, I ignore e-mails and texts and messages on Facebook.  I don’t feel like subjecting anyone to my negativity.  At my son’s soccer game, I set up my chair far away from all the other parents.  I can’t be social.  My friend Katie walks by and asks how my day is going.  Near tears, I tell her, ‘Not good,’  and when she gives me a tight hug, I bristle.  I’m angry with myself for letting people see me like this.  Seeing me weak and ungraceful.

At the next soccer game of the day, my friend Heather sets up camp next to me and babbles happily in her enviable way.   I wonder if she can tell; does she know how I am feeling?  She has said that she needs to run every day.  It is her sanity.  What is my sanity?  Why is my sanity a pill?

At baseball games later that day, I get a rush of joy seeing my six year old make a good hit and run to first base.  My heart warms watching my four year old play for the first time, seeing his short legs run the bases and follow directions and laugh happily.

On Sunday, Hubby asks me to help plant annuals in the flower garden.  The hard work satisfies me for an afternoon.  I’m unsure whether it is because I am learning more about something I’ve always wanted to know or that Hubby and I are working side-by-side on a project, but it brings me temporary reprieve.

But later, I want to be alone with my thoughts, away from everyone.  I know this is dangerous.  I’ve been alone with my thoughts too many times in my life.  Alone with the thoughts that tell me I am worthless, I’m a bad mother and a terrible wife.  I can’t cook or write or take care of my house or maintain friendships.  I’ll never be able to run a race or write a book or complete a goal.  These were the same thoughts that plunged me into a scary darkness three times in my life.

Once in high school when I was so paralyzed by feelings of inadequacy that I stayed in my room wallowing in misery, sure that I was so far beneath everyone else that perhaps I shouldn’t even exist.

Next, after I graduated from college and couldn’t find a job.  I hated substitute teaching, so I stopped answering the phone at all.  I stopped getting dressed in the morning and stayed on the couch all day.

And when I desperately wanted a baby after I was married, and everyone but me seemed to be getting pregnant.  I stopped talking to my friends and avoided social situations.  I remember crying to Hubby, begging him to let me stay home from his high school fund raiser because we would be seated at the same table as someone who was pregnant, and I didn’t want to stare at her swollen belly all night.

Hubby would often come home from work, and finding me in tears and on the couch would say to me, “You sat home and thought all day, didn’t you?”

It feels like the cartoon image of the devil on one shoulder and the angel on the other. It’s the classic battle between light and dark, which both reside in all of us.  But in someone who suffers from depression, the dark mostly wins.  That little devil tells me awful things about myself, and I believe him.

In my twenties, my doctor suggested I see a therapist.  I carried around the name and number for about a year before I threw it away.  It was just another thing that made me feel inadequate, that proved I was a failure.  I always thought it was something I had to live with.  It wasn’t that bad, was it?

But as I look back, it was.  It did paralyze me, it does keep me from doing the things I want to do – mainly loving my family and friends and pursuing my dreams.

Monday, I picked up the pills, and took two right away.  Slowly my head cleared, but I was still screaming at my sons and deleting every blog update from my e-mail.  I got back on my pattern of taking five milligrams every other day.  Any more makes me feel like a fuzzy-headed zombie; any less isn’t quite enough.

I have found time to use my treadmill a bit each day this week, and when I am tired, I have gone to bed before exhaustion hits.

This morning, I gave gentle reminders about backpacks and glasses and dressing for preschool and laughed when Baby E took the dirty clothes out of the washing machine.  I feel like my sanity is slowly returning and lightness and calm are winning once again over darkness and anger.  I feel like I am returning to the person I want to be, that I know I am in my heart and in my beautiful mind.

I have three, maybe four posts I want to write, and I am reading all my favorite blogs again for inspiration.  The words are forming themselves in my head, and I can’t type quickly enough.

I do hate that this sanity and clarity comes from a pill, but I thank God I can recognize this.  I thank God that I can recognize when my mind is jumbled and crazy and the darkness is winning.  I thank God for giving me a situation that forced the introduction of the medication.  I thank God that I will never be a Susan Smith-type mom who does the unthinkable to her children because she didn’t realize that she needed help or refused to seek it.

I vow to never let my prescription lapse again.  I vow to not care if society thinks I am weak or lazy for taking antidepressants.  I vow to never think that they are the only answer for these dark feelings.  I vow to take them for as long as I need them, for myself and for my family.

Most importantly, I vow to be honest about my use of them for other women who might think as I used to  – that they just have to deal with that devil character on their shoulder telling them awful things about themselves and believing it.  I vow to talk about it because if I had known anyone else felt this same way long ago, things might have been different.  Different as they are now.  Better.

All I have ever wanted was to be happy; but I have to fight for it, and I always will.  The more I fight, the more I learn.  The more I learn, the better I get.  If that means I need some medicinal assistance, then so be it. That little white pill and I will just keep knocking that devil right off my shoulder.

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Kathy is a former elementary school teacher who now stays home with her most important students, her four sons.  She began writing after she lost her oldest son at age six to cancer and as an outlet to dealing with another son’s ADHD and anxiety issues.  At her blog, kissing the frog, she writes about what really happens after all your dreams come true.  You can also find her weekly column at www.HerViewFromHome.com .

This post was originally published HERE and used with permission.

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Donning My Mask

by Terri, It’s A Wonderful Life: The Power of One

Okay, I don’t mean to sound like a bragger, but if I’m going to anyway I figured this is the right place to do it! Where to begin? First let me say that I’m sharing this very personal information because I feel like I think many of my hero blogger’s must, that if even one other person can see themselves in this post, and it motivates or encourages them to take better care of themselves or not feel so isolated in their journey, than it is worth it. So here we go…

In November, I decided something in my life needed to change, what could I control, as I was spinning out of control? I decided it was finally time to ask for help, just like Jess at Diary of a Mom talked about in her blog post Avalanche at  http://oxygenmaskproject.com/2012/01/18/avalanche in January.

And let me tell you:

IT IS THE BEST THING I HAVE EVER DONE FOR MYSELF!

(And yes, I want to scream it from the mountain top!) So, here I am on the mountain top, or as close as I can get for today.

I know there are people that think medications are over used, and in some cases they are; but when used appropriately, they can be life changing, if not life saving. I wasn’t sure at first how to ask for help, because I wasn’t really depressed, and I wasn’t really anxious, I was just really, really, really stressed. I figured, “well, there’s no pill for stress so I guess I just have to suck it up” and I did, for a really long time, until finally all that “sucking” started oozing out of every pore of my being, and quite simply I began to suck. I was irritable, agitated with everyone for even the smallest reason, in fact, I had no concept of the “small stuff” not to sweat, because nothing was small to me. I describe it as having no gauge for big or little insults or transgressions. My irritability shifted from once being only aimed at ignorant strangers who were inconsiderate of others, to those that I loved and were my safe harbor; first my husband, and then slowly to my children. I knew that I had a great life, but I certainly wasn’t acting like it. My wonderful husband, whom I am madly in love with summed it up best, when he said in the most loving way possible, “you were always mean to everyone else, but now you’re mean to me too.” That and hearing myself snap at my adorable 2 & 4 year old sons, who were in all honesty just doing their jobs being really good at being 2 & 4, bit by bit I seemed to lose every bit of patience I had prided myself on as having as a really good mom. Yes I have a child with Autism, this is to be expected right? Wrong. Man was I wrong.

Prior to having children I always said, “I’m just a b&*ch, if you don’t like it, you don’t have to be my friend” and trust me, I didn’t have a lot of friends, but my husband always loved me, even though I’m sure he thought I was losing it at times. For me to hear my best friend say I was being mean to him now too, hurt and shocked me into change. I married my husband because I love him more than anything, not because I wanted to have children. I never wanted children to change “us” (spoken like a person who had never been married with children before). And slowly after the last 5 years of having two difficult pregnancies, then infants, toddlers and pre-schoolers, one of them with Autism, “we” had in fact changed because I had changed.

My husband looked at me one night and said “why are you so miserable, aren’t you happy?” I was so sad. I was happy damn it! What was he talking about? I’m just really stressed! Gosh, how COULD YOU ASK ME THAT! Sounds pretty happy, right? OMG, what is wrong with me? Cue, November 2011, asking for help.

I saw a wonderful psychiatrist who said, you know what? You have some type of mood thing, this is NOT JUST WHO YOU ARE, this is not just your personality, you are not just a b*&ch. With proper medication and therapy you can be HAPPY. That is when my life changed.

Fast forward 6 months later. Tuesday, April 10th, sitting in Panera enjoying a sandwich by myself. Lots of therapy has proven to me in fact – I am not just a b*&ch! I had a lot of stress and a biologically based chemical imbalance in my brain. I’m not crazy, I was just unbalanced. Now with the help of an appropriate dose of the SSRI that works for me, and lots of therapy, and the support of the most amazing husband, friend and children, I can honestly say:

I am the happiest I have ever been in my life.

Did you read that? Yes, I am the happiest I have ever been in my life. Those of you who know me, know that means change, true change & commitment to it. I never knew that I could be happier than when I married my best friend, or when I had not one, but two perfect little boys, but guess what? I could, and I am! I am so happy, I want everyone to feel this way. I don’t want anyone to waste another moment stressing over the small stuff that they aren’t even capable of identifying as small. I am excited for the opportunity to have friends, and for people to like me because I’m happy & nice and not overwhelmed by my life. I put my oxygen mask on, and I breathed it in, slowly at first, one small pill, one hour of therapy every Tuesday evening. Then it was as simple as emptying my hot water heater. What do I mean? I took a shower so long that I used all the hot water. When was the last time I did that? Then it snowballed, and every day it got a little easier to take care of myself too.

Every Tuesday evening after therapy I went on a date with myself. I did something just for me. All alone. Can you imagine? I’d go to the bathroom alone, read a book, sit by the fireplace at Panera, browse the dollar aisle at Target, whatever I wanted, all by myself. Since then I’ve graduated, I’m feeling so good, I have such little to report at therapy besides happiness, that I go every three weeks now. But guess what? Every Tuesday night I still go on a date with myself. Occasionally I let someone join me, maybe a new friend. Maybe you, as I sit here typing this. The joy has been contagious, I’ve spread it willingly, lovingly, without resentment; my husband dates himself every Thursday and I’m confident he is happier too because of it.

After 8 years of marriage, and two wonderful sons, I can say with all sincerity that I am the luckiest woman in the world. I am the happiest I have ever been in my life. I feel like my marriage has never been more solid, that I have never been a better wife, friend or mother, and I am a better person for putting on my mask, emptying my water heater and asking for help. I never knew, I never knew, I could be so happy & my sincere hope is that you will be too. See you on Tuesday – I’ll be the one sitting by the fireplace, with the content, satisfied, fulfilled look on my face, I hope you’ll join me.

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Terri can be found at facebook.com/Its.A.Wonderful.Life.ThePowerofOne and says: Because I made the conscious choice to don my oxygen mask first, I am a better wife than ever to my amazing husband & partner, and also mother to my two wonderfully, amazing boys, one of whom has PDD-NOS on the Autism Spectrum.  When I’m not busy during the week running my boys around from school, to school, to therapy and back, I spend my weekends caring for others’ loved ones as a psychiatric nurse.  I am busy, and worn down at times, but I am also happy and determined that I will make a difference, not only in the lives of those that I love, but also for others who need a voice.  I believe in the power of one; one person can make a difference.  This is my attempt to do that…one person at a time.
Strange, isn’t it? Each man’s life touches so many other lives.
When he isn’t around he leaves an awful hole, doesn’t he?
    –It’s a Wonderful Life–

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My adversary

by Sheonad, Touch & Tickle

There are signs everywhere you look – road signs, shop signs, café signs – they convey  information and can only be thought of as a sign if we attach meaning to them.  They tell us which way to go, where to have a coffee and, sometimes, that we may be unwell.  Yes, there may be signs if we are unwell…

Signs can be medical and objective, being noticed by others and detected by GPs, but perhaps missed by us.  If you think about it, a sign isn’t a sign when we cannot read it or don’t understand it.  Sometimes we are blind to what is closest to us.  I missed my signs – I thought they were the sign of a busy life – and didn’t stop to read them, missing their meaning.

There may signs – known as symptoms – that hint at the existence of something undesirable, like illness for example. Symptoms can be physical or mental and are subjective evidence of a person’s condition.  Again, I ignored mine, too busy – or unwell?  – To know better. I did see them, peeking round the corner, but hid away from them, thinking that I was doing so well, thinking that they were all part of my “normal”, choosing to ignore them.

Over four short weeks, they were there, showing themselves, nagging at me, taunting me.  A few more tears here and there; a temper short and frayed which found me shouting at the girls; the lack of concentration and motivation; a sadness which hovered over me no matter what; feelings of inadequacy and an inability to cope; an exhaustion so deep and dark that I thought I would never get out of it; and the overwhelming sensation that, no matter what, life was hopeless.

For goodness sake!  How could I be so blind?  There was a history; there were triggers evident; this had not come out of nowhere: I had post-natal depression after Eilidh was born and her diagnosis with SMA was a huge blow and a life changing event.  Why didn’t I see it coming?  I could have stopped the downward spiral…  I could have stopped it from getting worse.

Amazingly I actually thought I was coping with my life rather well: a working mum of 2, living an unfamiliar life with a disabled child and managing somehow to make it wonderful. How naive of me!   I realise now that it was more of an “I’m OK. I’m doing a really good job of pretending that I’m ok, so please don’t interrupt my performance.”

And then one morning last week, I woke up and realised that it wasn’t a bad dream, that the symptoms were real and that my life – real, raw and laid open in front of me – was hurting. I couldn’t bare it any longer; it was too much and I broke down.  My tears fell and my heart ripped open once more.  I thought that I had beaten you – my adversary, my depression – when in fact you stand beside me, a symbiosis: you are here.

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A curly haired, sophisticated country girl with a taste for exquisite gin, Sheonad is a medic, a mum, and a dab hand at photography, knitting baby hats and sparkly leg warmers.  She lives in Scotland with two crazy beautiful girls and a very sensible, loving husband.  She is currently living an unfamiliar life with a disabled child who has Spinal Muscular Atrophy and managing somehow to make it wonderful, despite wanting to wake up and realise it was all a bad dream.  She doesn’t hide from the truth so take her straight without ice, and knock back a glass of the good stuff.

This post was originally published HERE and used with permission.  Part two of this post appears HERE.

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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?

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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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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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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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doing

by Jess, Diary of a Mom

images-1

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.

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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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