Monthly Archives: November 2012

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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Be Strong – But Not Always

by Jen, Be Strong

In July I went on hiatus from writing because my 44 year old sister was diagnosed with pancreatic cancer.  I was broken hearted and determined to be there for her as much as possible.  On September 10, 2012 my sister died.  I am still broken hearted….and yet…I am not broken.

With my sister’s diagnosis came a lot of anxiety for me.  This is not the place nor is it the time  (not ready to go there yet) for me to share all of that with you.  However, since the magical date I blogged about -March 11, 2012- I had gone down 30 lbs. and now, I am exactly half way between that and my starting weight.  Half way feels magical, too.  It is the moment I say to myself,  “Did I really change or am I the same person who won’t believe how fat I am until my belly sits on my knees?”  If you remember previous posts you know I am not afraid to call out my weight of 223 lbs because I carry that weight into the world everyday.  I carry this friggin amazing body into the world everyday!!!  It is a body that has not failed me yet.  How honored and blessed that I am.  Perhaps now is a good time to mention that exactly one day after weighing in at 219, I ran a half marathon in 3 hours and 9 minutes!  They didn’t ask my weight. They didn’t care my weight. If I could run I was in!!!  And I ran!!!

So here I am today 15 pounds heavier than I was in the last post in July.  And yet, I am wiser, stronger, more gentle and more loving.  Win-Win.  I am ready to get back to the healthier version of me.  So,  what made me gain the 15 pounds?  Easy.  I started drinking alcohol again and I stopped exercising faithfully.  I exercised here and there.   2 things.  That is it.  Nothing more.  There are solid reasons for both those things happening. I am not here to make excuses.  I am not here to ease any guilt because I don’t have any related to those two choices.  I am not even here to say that I slipped.  I didn’t.  Life happened as it does.  It came at me hard and I made different choices than I had been making.  Today, I look at those choices and say….”yeah, they worked for right then but those aren’t choice I want to hang onto long-term.”

And so I have stopped the alcohol for now.  I have started the spinning and the running again.  My goal is 3 miles 2 x a week and 5 miles once a week.  I will probably have to do a lot of that on the treadmill and although I don’t love that idea, the idea of making the gym work for me is great.  Spinning will be 2 x a week.  I know I will have to fight the not wanting to even harder with the days getting darker much earlier.  Winter is a time where I have to watch myself like a hawk or I will fall into a place where I want to wear sweats, read a book, and drink hot stuff as soon as I get home!

The good news is that I like the healthier me.  I like that I don’t shy away from things that are hard.  I had never pushed my body beyond comfort zone and it is such a feeling of accomplishment to do that!  I keep thinking about and loving the  idea that the more weight I take off of this body the faster I will run without having to do ANYTHING else.

Life will keep happening to us. Sometimes it will be gentle, but often it will hit hard!!!  It is okay if you get the wind knocked out of you.  Take time to catch your breath. When you are ready jump up and fight back!  Be Strong!  Be Gentle with you and those you meet along the way!

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I am Jen and I am a 40 year old mom, wife, and teacher among other things. I write blog posts because it is my passion, my therapy and, I hope along the way it helps others. My blog posts tend toward being about staying strong in the face of grief, anger, general hard times ss well as keeping yourself healthy so that you can continue to be there for the people who matter in your life. I hope you find some golden nuggets for yourself in my writing.

This post was originally published HERE and used with permission.

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What I Really Want To Say

by The Roc Chronicles

I’ve been pushing down the words for months.  Holding them in, sweating and pounding them out as I push myself on runs, sweeping them to the side, swallowing them with my dinner, and those words have clogged my brain and made me feel claustrophobic.  Lately I have moments where I cannot breathe and I have to stop and stand still, quiet my racing heart and clear my mind.  I stand in the bathroom and let the tears fall silently for a few moments before putting my face back together.  I start to release the valve and then I walk away from the computer.  I have posts in my draft folder titled, “More Than a Housewife,” “Grief,” and “Unexpected.”  I cannot finish them and push publish.  Too raw.  Too much.

A week ago I had a string of days in which I awoke in the early morning hours because of nightmares.  Five nights out of seven my eyes snapped open to register the darkness, my heart crashing against my ribs, the sheets and my tank top damp with sweat.  Images and scenes, worries and fears brought forward so clearly tears pricked my eyes as I tried to get back to sleep.  These awful dreams were never the same, but they all centered on the Roc, except for one.  I’d lost the Roc and couldn’t find him, he was choking and I couldn’t save him, he was a teenager and some boys lured him off the bus and beat him up and he couldn’t tell me who they were, and one dream in which the police knocked on my door to tell me my husband was dead.  I don’t need a therapist to interpret those dreams.

I have been struggling with that baby fence again.  Feeling secure in my decision to close the door on another child.  The years of trying and wishing and hoping and the crushing disappointment of loss too much for me.  I want to move on from these feelings.  I want to stop thinking about it.  I have days when I say NO loud and clear to myself.  This one is more than enough.  We three are good and I have all that I can handle.  I have a few days here and there where my heart aches for the 6 month old baby I would be taking care of today.

I heard, “Wow, I don’t know how you do it.  He is a full time job, and I can tell you work hard,” from the Roc’s spec ed teacher during one of our recent phone conversations regarding his spiraling behavior at school.  It’s been hard to get these notes, these emails, these phone calls from school.  Is he really acting up that much?  Is it so different from last year?  Why?  Is this spec ed teacher, who is new to the Roc, and new to this age group, putting more emphasis on the negative?  How and why is it so different from last year?  Where is the positive?  There is positive about my child, they see it right?  Are they making sure to focus on the positive?  What message is he getting at school?

School.  Sh*t school is getting hard for my boy.  He is struggling, but learning at his own pace.  I struggled to hold onto the positive when we heard all that he cannot do and how far behind he is during our recent IEP meeting.  I am dreading fall conference tonight.  Dreading.  Dreading.  Dreading.  The notes, emails and phone calls this past week haven’t helped.  Homework battles ensue every afternoon after school.  It is so hard to watch him struggle.  Not much comes easily at school and it’s hard on my heart to imagine what he feels like when he’s there.  What his body feels like, and what his heart feels like.  I worry.

Recently, in a moment where I was so full of warring emotions I fired off a string of words to my friends, my autism mamas, my sounding board:

I’m feeling the panic well up inside.  I’m fighting it.  It’s winning.  There is just SO MUCH to teach this child.  How will I do it all?  How can I prepare him for the world.  The smallest interactions with people are so terribly hard for him.  He’s having a rough go at school.  Learning to read is frustrating the sh*t out of him, math is so hard, everything is hard.  Friends?  What friends?  I’ve seen the looks, I notice the avoidance.  Oh my heart.

On a walk at the dog park this afternoon he told me he wished we had more kids at our house and then asked me, “What were you going to name that baby who died?”  Oh my heart.  I thought my chest would explode.  Oh my heart.

This is hard.

This is hard.

Some days I am overwhelmed with all that we are working on right now.  Right NOW.  Actually, many days, no most days lately I am overwhelmed by all that we are working on Right Now.  All the things I still need to teach this child that other children pick up through osmosis.  The school stuff, the at home stuff, the daily living stuff, the friendship stuff, the conversation stuff, the anxiety, the frustration, the….everything.  The small things all the way to the huge.  There are not enough hours in the day.  I waste no time, and yet I do not have enough.

How do I get it done?  How do I fit it all in?

I know there are no simple answers.  Small bites a friend told me.

Keep breathing.

This is hard.

There is so much more to say.

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I’m a full time stay at home Mommy to my eight year old son “the Roc” who was diagnosed with autism in Dec 07.  Married to a Jersey boy whom I call “GC” (as well as “babe.”)

This post was originally published HERE and used with permission.

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Filed under Remembering to Breathe