Tag Archives: advice

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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The Respite Requirement

by Hartley, Hartley’s Life With 3 Boys

I have been a special needs mom now for nearly 10 years. That sounds much more impressive than it is mostly because when my oldest was young, I didn’t believe I was a special needs mom, let alone have the guts to say it. The only thing I really would admit to was that parenting my son was challenging.

Ok not just challenging, but demanding, and unusually exhausting. Which made me feel like an utter failure. I remember having conversations with my husband where I was in tears saying I needed help with everything from the kids to the housework, where I tried to explain how I could be so overwhelmed after a day at home ‘just’ taking care of the kids and running errands. He never understood why I wasn’t giving Mary Poppins a run for her money and reminded me often that it was ME who wanted to be a stay at home mom. He was right  –  I did want to be a SAHM  –  but I never expected it to be so unbelievably hard, and I sure didn’t expect to be so bad at it.

I watched friends and neighbors parent their kids and it seemed like it was effortless for them. Packing up their toddlers and babies and heading to grab lunch with their friends at a restaurant, or heading over to watch the city parade on a whim, or strapping their little ones into a double stroller and hitting the mall to do some shoe shopping. How did they manage that?! Back then I didn’t really understand how incredibly different my life was from theirs. I hadn’t adopted the term ’special needs’ for my boys, or me and I sure didn’t think about respite. Perhaps I was even opposed to it. That somehow my need for a break only confirmed how much I sucked at parenting.

Fast forward a few years, add two more boys to the mix and a handful of diagnostic acronyms, and the picture was a tad clearer: I am a special needs mom.

And with that term came permission for me to acknowledge how much time and energy went into all of the logistics of having a special needs child(ren), not to mention the emotional worry and constant planning for their future that sneaks into your conscious thoughts (alongside the awareness that the future is completely out of your control) and the daily grind of everything from making peanut butter sandwiches with only creamy Jiff, on white bread, with the crusts cut off and cut into four perfect rectangles (or be forced to throw it away and start over) or going through social stories and preparing impromptu visual schedules just to make an unplanned trip to the grocery store. Why wouldn’t I be exhausted? Exhaustion should’ve been a given. Which means respite should’ve been too.

Parenting a child that has special needs requires you to be ‘on’ every day  –  all day. This is not for pansies  –  this is no meet-your-girlfriends-at-the-park-for-coffee type of parenting. This is 100% emotionally, mentally, and physically demanding of everything you have, every minute of every day and it never lets up. Like I said, exhaustion is a given, and respite should be too.

My kids are difficult. Don’t get me wrong, I love my boys and wouldn’t trade them for anything, but the truth is, most days, I need a break. Some time when I am not calling the doctor, or filling out another assessment form, or running to the pharmacy, or planning what to cook, or washing the ‘right’ clothes for morning, or picking up Legos, or whatever. And other days? Other days I think running away to Mexico is a good idea, because maybe they won’t find me and my wine-serving taco truck on the beach and drag me home.

Years ago I felt guilty for wanting a break. Not anymore. I still get exhausted, overwhelmed and worn out because I am parenting in a high-demand, insanely busy world, where my ‘bosses’ are three small boys who could not have higher expectations of me. But now I know Mary Poppins has got nothing on me.

So long as I get my respite time, and lots of it. It is a requirement of my sanity and my ability to perform my job. I have to find time to regroup, unwind, de-stress and generally NOT have to be ‘on’.

And after 10 years of this intense parenting stuff, I have learned that needing respite time doesn’t mean I am bad at parenting, it means I am GOOD at it.

You are too.

This was originally published on the SPD Foundation’s Blog  – head over there are read the other amazing posts from great SPD moms and dads!

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Hartley Steiner lives in the Seattle area with her three sons. She is the award winning author of the SPD Children’s book This is Gabriel Making Sense of School with a 2nd Edition to be released April 2012, and Sensational Journeys (available now at http://www.fhautism.com) as well as the founder of the SPD Blogger Network (www.spdbloggernetwork.com). She is a contributing writer for the SPD Foundation’s blog, S.I. Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs. You can find her chronicling the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys (www.hartleysboys.com) and on Twitter as @ParentingSPD. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.

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debt

by Jess, a diary of a mom

My friend Jeneil wrote a heart wrenchingly beautiful post this morning. It’s a post about love. It’s about what it means to find the grace within oneself to accept help when we need it. It’s about mercy and redemption.

It couldn’t have come at a better time.

Jeneil and I have known each other for a little less than two years. Despite the fact that we met as fully grown adults (c’mon now, no height jokes please, this is a serious post), mothers and even pretty evolved women, I would dare to say that we met during our ‘formative years’. I don’t think that Jeneil would argue if I said that she and I are both light years from where we were merely two years ago.

I have watched with sisterly pride as my fiercely independent friend has learned to accept help. I’ve watched her struggle to make peace with the fact that this CAN’T be done alone. I have watched her grow. And of course, I have watched her see clearly – as she always does – God’s presence in it all. I have learned so much from her. And I am grateful.

But I got stuck in the middle of her post. I got stuck on the word ‘indebted.’ I got stuck when she said, “I thought, My mess, my problem. Leave me alone to suffer. If you help me, I’ll be indebted and I don’t like that feeling.”

My life is dramatically different from my dear friend’s. Day to day, moment to moment – there are few similarities. But I too need help. I need it every damn day – whether I want to admit it or not. And every day, it is given. I don’t always see it, but only because I don’t always remember to look. Sometimes it’s buried deep in the farthest corners, but it’s always there.

It comes from my friends. It comes from my family – both blood and chosen. It comes from my children’s teachers, administrators, aides, therapists and doctors. It comes from the dance instructor who believes that everyone who wants to should dance. It comes from the researchers who toil in labs and from the waitress who finds us a quiet table in a busy restaurant. It comes from the mothers who bring our story to lawmakers on Capitol Hill and it comes from the woman in the market who doesn’t judge when my girl is having a hard time. It comes from Neuroscience professors who invite parents to speak to their classes and it comes from the man in Home Depot who finds a flower for my daughter when she just can’t handle any more. It comes from the mother at the pool who buys her a hot dog when I’ve forgotten to bring money. And of course, it comes from you.

Today – at this very minute – I need more than I probably ever have. Over the past week, I haven’t been shy about asking for it. I have literally made calls and simply said, “It’s Jess. I need your help.” And it’s been there. God, has it been there.

I’ve gotten better at making those calls. For better or worse, I’ve had some practice. Quite simply, I can’t do this alone. When I can, I give. And when I do, I give big. When I must, I take. I try like hell to do both with grace. I know I often fail. Giving is easy. It’s the taking that’s awkward. Pride is strong.

But what of indebtedness? What of Jeneil’s words I am indebted?

Do those who I love owe me for the times that I give them what I have? Do I owe them for the support that they give me in return? Is there some kind of cosmic scorecard?

With all the respect in the world for my dear friend, I just don’t buy it. I don’t think that debt has any place in her story – or mine or yours. I don’t believe that love – either the great love of God or the humblest love of a friend – keeps account of what it gives or what it receives.

There can be no debt in love.

Unlike any other resource we have, love’s supply can never be depleted – neither God’s nor man’s. Because the miraculous thing about love is that it replenishes itself through the very act of being given away. That’s a pretty amazing thing. What else works like that? As we give it away, it grows.

So to my dear Jeniel – to all of you – I say,

No debt. Just love.

And gratitude. Lots and lots of gratitude.

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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 HERE and used on our site with permission.

 

 

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Two Steps Forward One Step – The Setbacks

by Marianne, The Coffee Klatch

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

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

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

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

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

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

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

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

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

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

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

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

Wishing you strength and calm.

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

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

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

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

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

 

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Be Selfish

by Luau, Run Luau Run

That’s right.

Be selfish.

I don’t mean cut people off  in line or swipe the last food item without asking.   I don’t mean hoard all of the ice cream, talk without listening, or think only about yourself.

What I do mean is go out for that long run, go to that gym class, schedule that massage, meet your girlfriend for a manicure and pedicure, book that haircut with your hairdresser, and occasionally, eat your cake too!  And don’t feel guilty about it! (Unless you are one of those people who ONLY does those things…then I’m not talking to you.)

I think that people who work very hard taking care of others very often forget to take care of themselves.  I see it in the eyes of my wife and others who spend so much time tending to the special needs of their children, siblings or parents.

The focus.

The Go-Go-Go.

The exhaustion!

Even when a particular need is met, there is often still a mountain of needs that are waiting to be taken care of.

No time to rest. Must get to the next task!

But what we all need to remember, that in some cases, being selfish is the most selfless thing you can do.  By taking care of yourself, you are better prepared, better able to deal with the challenges that you face.  It allows you to be more than just there.

Taking care of yourself could be getting some sleep, getting a run in, or maybe even something simply cosmetic like getting your hair done.  It’s important.  It’s important because if you don’t do it, you’re gonna crash and be useless.  Who can take better care of the ones you love better than you?  No one, except a rested you.

There’s a problem of course.  There are only 24 hours in a day.  Those hours can come and go very quickly.

When, Luau, when am I supposed to be able to do these things for myself? I hear ya.  I really do. Let me pose it a little differently with an unrelated short story:

Many years ago, the wife and I were struggling with a recommendation from a doctor regarding little Brooke.  I won’t get into specifics, but suffice it to say that it was a very difficult decision that took a lot of soul searching.  We kept asking ourselves, what happens if we do this?  What are the possible negatives going forward?  In the end, and I can’t remember whether it was the wife or I who came up with it, but we flipped it and asked ourselves, “what is the price if we don’t?”  Once we approached it from this perspective, our path was clear.

So I ask you this.  What is the consequence if you don’t somehow find the time to take care of yourself, both short-term and long-term?  And if you ultimately break down, who will be there to take care of those you have been working so hard to take care of?

I am selfish about my running.  4 – 6 hours a week.  Those 4 -6 hour are mine and no one else’s.  Sometimes it’s 90 minutes at 4:30 in the morning, sometimes it’s 2 hours starting at 11:00 at night.  If I’m lucky, I get a lunchtime run in.   It keeps me up even when the world conspires to bring me down, but it also contributes to hopefully keeping me around for at least another 50 – 60 years.  If I can be relatively sharp-minded and able-bodied until I’m 90, Brooke will have me around until she’s almost 60.  Hopefully by then she won’t need me the way she needs me now.  That is why I am selfish.

What do you need to be selfish about?

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Luau is a dad, blogger and avid runner.  He started running for the joy of it in November of ’08. Before then he would run because he needed to exercise. Now he runs because, well, to steal a line, we were born to run. He is a firm believer in the concept of taking of oneself in order to properly be able to take care of others. It’s not on the path he thought he’d be on, but he has found that this journey has made him a better man, husband and father.

This post was originally published HERE and was posted on our site 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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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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Filed under Remembering to Breathe, Taking the next step