Today's post goes back fourteen years, to 2012.  Do you have any idea how long some of us have been caring 24/7/365 at breakneck speed for our children? Some of our children are approaching 30. We do it with a partner. We do it alone. WE DO IT every day. We never do it alone, as long as Age of Autism is here.

By Cathy Jameson

This old post of mine has been on my mind a lot lately.  That's because lately, we have a different window of time where Ronan is doing okay.  He's doing okay for a number of minutes.  Then, he starts to not do okay.  I can get a lot of things done from minute 1 to 66, especially if I've planned out my morning the night before.  But 66 minutes isn't enough time to do everything, especially when the next 84 minutes, or longer, is sitting seizure watch. 

In those next 84 minutes, I can't do much of anything.  

I can worry a lot, though.  

And most days, I do. 

Parenting a child with complex medical issues is challenging.  When I think back to when I wrote this post, I faced different challenges.  Back then, besides the medical issues, we dealt with a lot more behavioral issues.  Those have subsided over the years.  What hasn't changed is my devotion to my son.  I pray that I can always push through every challenge he and I face.  I pray that I can remain not only physically strong for him but also mentally and emotionally strong as well.  

How about you?  What are your current challenges?  And, how long can you set your timer?  

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March, 2012
By Cathy Jameson

A quarter of a room vacuumed.  Half a lunch downed.  A portion of laundry sorted, washed or folded (but never completely put away).  A full head swivel.  In those spurts of activity, that’s what I can get done before I have to look up for Ronan.  Only when I can see or hear him do I breathe a sigh of relief. He’s staying with his activity (for now).  He’s present.  Accounted for.  Good.  He’s safe.  I carry on.  My inner clock timer resets. 

Three minutes. 

This is how long I have in between where I left Ronan and what I am attempting to do.  Shower?  Forget it.  Gourmet meal?  Never!  Baking?  You must be kidding.  I have no time to commit.  What other housewives might likely take for granted or even resent I blaze through.  It’s nearly impossible to do one thing from start to finish while I keep one ear listening for Ronan and one eyeball on his constant look out.  But, that’s how much time I have.  Three minutes. 

Repeat. 

***

When LJ Goes wrote her powerful piece about what two minutes in the life of a child with autism looks like I thought, “Poor LJ!  Two minutes?!  How awful!”  In two minutes her life goes from normal to unbelievably wrong.  I walked around my house the week after her post went viral thinking about those two minutes.  I thought about LJ running franticly  through her own house trying to stop the madness.  I thought about that child of hers how he screams, literally screaming in pain trying to figure out how to control a body that is riddled with toxins.  In two minutes her child spiraled to a place no parent should ever have to witness.  How I wish it were different. 

I’ve been able to think about LJ’s two minutes for months now.  Her article haunted me for days and days, and obviously for a long time as I’m just now sitting down ready to reflect on and write about it.  Since reading it I ended up timing how long my son Ronan was willing, and later able to sit for an activity.  It’s not very long at all.  Once he’s done, he’s done.  Redirecting is difficult.  Starting something new takes some cajoling.  Distractions fill his gaze.  Frustration at not being able to complete simple things hangs over him.  Three minutes isn’t very long, but for Ronan sometimes his three minutes is long enough. Not only does his time limit stop him, it seriously hampers what I can and cannot do.  It also makes me prioritize what I want to do or don’t want to get done. 

Something had been bugging me since last fall.  I added it to my “Someday Get It Done” list--those are big projects but have incredibly low priority.  On that list was rake part of the yard that had been neglected around the same time I had surgery last November.  Feeling strong enough to do yard work a few weeks ago had me bump Rake Leaves over to my regular “To Do” list. 

When we hit 70 degrees over a weekend I thought, Perfect!  I’d been aching to be outside in the sunshine.  Plus those unsightly leaves needed cleaning up.  A wind storm had brought many down and our neighbors dumped a few over on our side of the property line.  I had a mess to deal with.  My husband had already cleared a majority of the yard but the portion that was left bugged me.  Not wanting to take time away from Ronan or other family events we’d planned since November, the leaves were forgotten.  I would usually have to wait until someone else could sit and be with Ronan if I wanted to spend the amount of time it would take to bag the leaves anyway.   Remember his three minutes?  Three minutes indoors or out.  Three minutes.  Tops.  Plus, he has a habit of bolting when he’s outside. 

But, the warm weather was enticing.  I decided I was going outside no matter what.  Ronan would have to accompany me because my husband had to work over the weekend.  I thought it would also be a good time to start shaping Ronan’s outside routine.  With spring around the corner, it was time to practice outside safety again.  I hadn’t planned anything else on that sunshiny day and wanted to take advantage of the warm air, my better energy level and Ronan’s cooperation.  He’d been in a super mood that morning.  No meltdowns, great communication and even better, he had a tad longer time-on-task attention span.  My other kids were out gallivanting through the neighborhood with their friends while my husband was at work.  Half my responsibilities were taken care of so it was just Ronan and me.   We’d go outside together.  Surely I could get some yard work done, right?

I put on some old jeans, got Ronan’s necessaries (iPad, cup of almond milk, a hat he likes to wear) and we went out to the back yard.  I set Ronan up on the deck—close enough for me to see his movement and also to hear the iPad apps to know he hasn’t left the deck area. 

Rake, rake, glance up at Ronan.  Rake, rake, shove a handful of leaves into a bag.  Rake, rake…“Ronan? Ronan, wait!  I’ll be right there.”  I ran over to the deck as he signed “listen yes” while flashing me a big smile.  He’d somehow turned the sound on the iPad down and was ready to travel down the stairs and across the yard to me.   I meet him half-way and resituated him back on the deck, “Here you go, Buddy.”  Back to the pile of leaves I rushed knowing that inner timer was ticking.  I only had two minutes left before resetting…more leaves, more raking, glance up, smile at Ronan, reassure him he’s doing great, “Good job, Rone!”  Fill a bag, maybe even two.  Maybe not.  

As I raked and stole frequent glances toward Ronan I wondered was it worth it.  Is raking leaves really something I wanted or needed to do?  That day, yes. I wanted to prove that I could do something that other people do.  I wanted to check off a list I rarely get to.  I wanted to soak in the rays of that sun.  I wanted to sweat outside again.  I wanted Ronan to tiptoe back into the outside world he loves to be in but cannot navigate on his own.  I wanted both of us to enjoy the feeling warm weather brings—freedom.  Freedom from the walls that feel like they are caving in during the long winter months.  I wanted and got all of those moments. 

***

My three minutes seem like the opposite of LJ’s two minutes.  I have 60 seconds more to attempt to do something while LJ might wish for 60 seconds less of the struggle she has.  I’m quickly getting things done like cleaning, assisting one of my typical children with homework or creatively planning how to make the next meal hoping it’s somewhat edible by the time it’s served.  LJ is in full-throttle defusing a child who didn’t deserve what was done to his body.  Her inner timer must pass out after an episode.  Mine, as long as Ronan hasn’t wandered off into danger, quietly resets itself and I restart a household chore, a task at hand and even my attitude.  Three minutes to scarf down a meal before having to either get up to find Ronan, to send one of his siblings to check on him, or to hope he comes back through the room he just left so I can lay eyes on him again.  

“Whew! He’s okay.  Now, quickly.  What’s next?”

It was hard to read LJ’s post, and then to reread it several times over the last few months.  I felt like I had to reread it.  I wanted to hear her words and imagine what must go on in the mind of another parent.  Who better to learn from than one of the greats?  LJ and her husband are never going to stop trying to help Noah.  They’re going to kick this autism out of their house because it has no place in their child’s life.  It’s reeked major havoc and has wasted too much of their child’s time.   Their commitment feeds my own and reminds me that I am not alone in what many days feels like an endless battle.

I might only have one more minute than LJ, but it doesn’t matter how much time we have or don’t have.  After taking care of our children we’re using up every second of every day to read, write and share what we have learned.  We’re doing this because the autism clock is ticking, and sadly it doesn’t slow down.  Time is ticking against our kids’ development.  It’s ticking closer to a despair that sometimes hangs over our heads.  The longer we feel those minutes ticking away, the louder LJ and I both seem to get. 

We’re reaching out to someone new with our tired, worn-out, awful stories.  We’re forced to talk about what can happen in two very short minutes and why some of us are only able to work in three-minute intervals.  We’re working overtime because more children are falling ill.  Vaccine injury hasn’t gone away.  Autism is becoming an everyday word and diagnosis.  New people are added to warrior parent status.  We have to harp on this topic until every disaster is cleaned up, until attention spans can grow longer, until children’s health and development are valued.  Too much has already been taken from us, from Noah, from Ronan and from so many children.   One day, and I wish it was someday soon, that has to stop.

I’d love for my inner timer to not have to reset.  I’d love to have the worry, stress and moments of despair be whisked away.  So much has been taken away including our precious time.  Time is one thing that cannot be stopped or exchanged.  How I’d love to go back in time to change a few decisions.  Two minutes to change my mind about a medical decision.  Three minutes to feel confident I did the right thing.  Time.  It feels like it’s slipping through my hands.  How I wish I could ask for some of it back

Cathy Jameson is a Contributing Editor for Age of Autism.