A Break

It’s 2AM and I am writing instead of sleeping.  No surprise there - the swirl in my head never ceases and sleep is a luxury I seldom attain these days. So I sit in the kitchen putting some of that swirl on paper as I look out at the pristine snow in the backyard.

Tonight sleep eludes me because I received an e-mail home from Will’s teacher.  She wrote that he had a tough day today, that he had trouble focusing and that she needed to prompt him several times about his behavior.  Granted, it’s Friday and there was snow falling and he is a 5-year-old boy.  However, it is difficult for me not to go into panic mode.  ”Not again” I thought.  ”Please, not again.”

It became an afternoon of worry.  An afternoon where I beat myself up again for not doing enough, not spending enough time, for not doing whatever else it is I should be doing.  The fact of the matter is that his care and all the things that go with this damn ‘spectrum’ could become my full time job.  That leaves little time for anything else.

He started physical therapy right after the New Year.  It seems to be going really well and he loves the one-on-one time with the physical therapist.  She is really in tune with him, too, which is often so hard to find in these therapists.  Each time he is done a session he asks when he can go back again.  That’s a good sign.

The day of his first session, after meeting her and running him back and forth to the session and then to school, I came home and sat in my kitchen and cried.  Even though she was great and the session went really well, I sat on the floor and cried.  I e-mailed my close friend Tracy, whose son is the same age as Will and also on the spectrum, and told her what happened.  Her e-mail back simply stated “I understand.”

In the aftermath of the Connecticut shootings, I (like so many other mothers, I’m sure) contemplated motherhood and my parenting skills.  I know all of my autism mom friends did the same thing.  Am I doing enough?  What if I’m not?  How do I keep him safe?  How do I keep that from happening?  What if he, one day, hits a point where I can’t help him? Where do I go from there?

There is no break from this - ever!  When you let go, even for a second, thinking it might be ok and trying to catch your breath or even remember the person you were before autism became your way of life, well - it’s not ok and then shit starts to happen again.  And I just don’t want that shit to ever be stuff that I can’t explain or fix or that puts us on television.

And so…when I get up in the morning (later I mean), I will regroup and re-focus.  I will spend the time and work on walking up and down the steps appropriately a few more times each day.  I’ll do more research and find better shoes and talk with him about behaviors that are ok.

And then maybe I’ll sleep…ha ha! Highly unlikely!

When They Ask Why

I can honestly say that I have been hiding again – avoiding my writing for whatever reason.  This time of year always brings a bit of frenzy as we try to prepare for the holidays and keep the kids in check, so to speak.

When I first put the boys on the bus for kindergarten back in August, it was with a great deal of anxiety.  There were so many things about which I worried – would they make friends, be scared on the bus, like their teacher? Would their teachers enjoy them as much as I do?  I can say truthfully, that I was not worried about them getting shot at school.  The very thought never even crossed my mind, frankly.  Why would it?

When I dropped them off at school this morning, like so many other mothers across the nation, there were extra hugs, extra kisses and extra “I love yous” before I let them go.  I lingered longer than usual and said a small prayer that they come home safely to me this afternoon.  Just like millions of other mothers around the globe…

I know when they come home this afternoon, there will be questions – questions that I am hardly prepared to answer.  Why there were policemen at school today, what were the older kids talking about and perhaps even why their teachers seem slightly more solemn than usual.  I know I will tell them the truth, but I am still unable, like so many, to answer the question why?

I’m disheartened by the media’s glib handling of the shooters obvious mental illness – just quickly mentioning that he was a person with autism.  I wonder now, as my son goes to school with police officers patrolling the hallways and school grounds, will he be protected or profiled?  Will folks look at him and wonder “Will he grow up to be like that?”

I am certain that I am overreacting a bit, but like so many right now, I feel scared and violated.  I am a different person than the mother who dropped her children off at school on Friday.  More than stricter gun laws, this nation needs a better understanding of mental illness and more ways to help those in need.  It needs to be okay for a parent or patient to say “I need help” and for someone else to say “How can I help?”  So many times we turn our heads and think it’s not our place to intervene.  The time has come for us to be able to say to someone “I think you need help and I am here to help.”

So, when they come home this afternoon, I will give extra hugs and kisses again.  And I will answer all their questions truthfully, including when they ask why.  And I will try to continue to teach them that it is okay to say something.

The Gift of Sight Words

I am often envious of my creative, artistic friends – the ones that can draw, the ones who are so visual and can see it before it hits the paper.  My artistic ability is limited, hence I became a scientist.  My ability to ‘visualize’ is equally frustrating to others as it is to me.  My husband will attest to this as we debate how to remodel our kitchen.  “I can’t see it, “ I tell him.

Writing, on the other hand, comes easily and naturally to me.  Blog posts and poems and short stories roll around in my head, sometimes for days, until they make it to paper.  A friend was once amazed that I could knock out a blog post in under ten minutes.  “It’s been written for a while, “ I said.  “I just needed to get it on paper.”

The boys have been working on sight words at school.  The true definition of a sight word is one whose spelling is not straightforward and therefore cannot easily be sounded out by a new reader.  This can be frustrating for young kids, since there is generally no good way to visually illustrate what the word means.  I am reminded of the list of prepositions I was made to memorize in Mr. Bogdan’s seventh grade English class.  As we look for order and repetitiveness in our world, the English language is not always the best place to get it.  The use of sight words also represents a significant milestone in development for children – not knowing them can hinder reading and writing ability.

I have had tremendous concern about Will’s reading and writing capabilities.  His lack in fine motor skills makes it difficult for him to write, which in turn made me wonder if he could spell.  That myth was dispelled with the iPad and his ‘gift of gab’ began to grow.  The other night as I was finishing up the dishes, Will began to play around with the buttons on the dishwasher.  “On, off, on off.”  He looked up at me with that big grin.  “Those are sight words, Mommy.”  He was beaming.

“Tell me what those two words mean, baby” I prodded as I stopped putting dishes in the machine.  “On means it is running and off means it is done running.”  He looked at me like I was the stupidest person he had ever met and then trotted away to do something else. “It should have a middle button for sort of, since it is such a piece of crap,” I laughed to myself.

Many children with autism struggle immensely with words and language.   Annabelle is one of those, yet she does a tremendous job documenting her personal frustration with writing words and how it sometimes hurts her head (like when I am trying to visualize my new kitchen, dishwasher included).  If you look at Annabelle’s pictures though, you begin to see why I envy those with the tiniest bent for art.  They are incredible, intense, amazing – and do a wonderful job of speaking for her.  How does she see a picture there?  I will never know.

Enjoying The Noise

I love this picture.  I often look back at pictures of when the boys were little - sometimes to laugh, sometimes to reflect, sometimes to investigate.  I look at these pictures and often wonder if there were signs that I missed.  Not a good practice, I know, but I can’t help myself.  Like that red, eczema-looking rash on his cheeks - signs of a dairy allergy?  I wish I had known then…

There is no sense in it.  I could never have predicted or even imagined what might have been in store.  Nor is it beneficial to beat myself up for things I could have done.  I just need to embrace the future and enjoy the here and now.  Sometimes I force myself to just stop and enjoy the noise.  And I try to help others learn the signs, create awareness and advocacy.

In A Moment…

I was getting ready to write – it’s Friday and I need to post something.  I went to check my e-mail, looking for a coupon (of all things).  I want to buy this dress and thought I had a coupon in my inbox.  There was an e-mail from an old, dear friend from high school.  I was so excited to hear from her – wondering what she had been up to lately.  The e-mail was actually from her sister.  It turns out my friend had a stroke at the end of August.

I’m still in shock as I try to write this.  She is perfectly healthy, the same age as me with three kids and a husband.  “Strokes are for old people, right?” I tell myself.  “How could she have had a stroke?  What does it mean?  I should get on a plane and go see her.”   All of these thoughts race through my head as I try to imagine what could have happened and what this could possibly mean for her family.

I started the day off grumbling – it was raining, I was having hot flashes and the boys were extra, super rambunctious.  I was listing all the injustices in my head while working through the chaos that is my everyday life.   I feel a little selfish now.

Just when you start to think that life is unfair, God or fate or some higher power reminds you that your life ain’t all that bad AND it is very short.  Enjoy every moment, even the ones sitting at your desk doing mundane tasks for work.  Certainly all the ones where you have to chase your children around the house to get them dressed and nag them to death to brush their teeth.  My friend is probably wishing right now she could be home to nag her children about anything.

She is undergoing all of the things that Will does on a daily basis – speech, OT, physical therapy.  She has a long road ahead of her, but will be coming home in the next week or so.  Luckily, she has the love and support of a great family.

Strokes can occur at any age.  About 25% of them occur in patients under the age of 65.  It is important to know the signs and what to do.  This is probably what saved my friends life.

And remember: “No matter how you feel, get up, dress up and show-up!  Life is not always wrapped in a bow, but it is still a gift.”