June 2013


I’ve read my friend Jess’ post “physical” three times today.

I know that he can’t help it. He was up at 1am. We’re going his favorite place on the planet tomorrow. It’s the first real day of summer vacation. We have no routine.

In isolation I can take it. I can rationally understand the stimming, the crashing into me. When it is just the two of us, I can let it all go. Let him be who he needs to be. Let him scream, squeal, and climb all over me.

But we don’t live in isolation. It affects everyone in the house.  Constant conflicting needs. I have an older kid screaming at me to make him stop. I have a younger kid mimicking it all and infuriating everyone. I have him trying to choke or push on his younger brother’s belly because he needs a squish.

Not malicious. I know he can’t help it. But it hurts everyone else.

So I have yelled. Screamed. Yanked him away from potentially hurting his younger brother and pushing him off of me as he tried to climb into my skin.

And now I have taken away the one thing that is causing the spiral – the trip tomorrow. He has to earn it back. Rationally I know this is wrong. Putting the onus on a kid to reverse his behavior that he cannot control.

But I have four other people in the family. Including me.

They are all mad at me now.

And this all combined makes me feel not only like the worst parent in the world but the worst autism parent in the world. Because I should know better right? Me, the advocate for acceptance and understanding and tolerance. The one who goes into his school and reminds them that he cannot help how he behaves in times of stress/anxiety/uncertainty. I shouldn’t yell because none of them – my whole household full of people somewhere on different parts of the spectrum – cannot help it.

And yet, I did. And now the empty threat of no trip.

He and I sat on the stairs for a while. I held him as he screamed that it was everyone else’s fault.  That they were “blowing up his nerves.”

I brought him up to his room just now. Told him this was his safe space to escape just like the Learning Center at school was his safe place there. This was his place for a break. We brought out his train tracks and I told him to build one while I got a hastily thrown together dinner ready for Gerry before baseball in the 100 degree heat.

I told him we would earn the trip back together.

But I hate this. I really really hate this.

Not my kid. Not autism.

I hate my inability to handle it. I hate their inability to handle it. And I don’t know where to go from here.

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No one said it would be easy

But no one said it’d be this hard

No one said it would be easy

No one thought we’d come this far.” – No One Said It Would Be Easy by Sheryl Crow

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(Three of two posts about Father’s Day.  Yes, I know.  Math is not my strongest subject.  Moving on…)

Tim was heading out the door for work.

I said my usual “Guys, say goodbye to Dad.”

“Bye Dad!” calls Gerry.

As the door shuts, Howie says “Oh good.  I am glad Father’s Day is over.”

“Hey, Howie, don’t be mean,” I snapped.  “We’re nice to everyone every day even when it isn’t Father’s Day.”

He was silent.

I continued to get the kids’ stuff ready for school but the statement kept rolling around in my head.

It just wasn’t sitting right with me.

Not his statement.  Mine.

I sent some friends a message:

As Tim left this morning, Howie said “oh good. Father’s day is over.” At first I thought he was being mean. But maybe the pressure of father’s day is what made him so out of sorts yesterday? I know I was on edge.

I thought back on the whole day yesterday.

Howie up at 3:30am.  Climbing into my bed and trying to climb under me.

Telling him when he woke up that it wasn’t nice to kick Dad out of bed on Father’s Day.

The strings of silly words and refusal to eat any food, only yogurts.

Reminding him to say “Happy Father’s Day” to Tim.  Prompted three times before he said it.

Asking to go outside in his pajamas at 8:30am to go swing on the swings.  Alone.  For 25 minutes.

Telling him we had to be on our best behavior while at work with me with all the dads coming in for Father’s Day.

Playing solo at the sensory gym with his own game.  Ignoring the other kids that he usually plays with.

Reminding him we were giving Dad space and alone time for Father’s Day so we were going to the store/farmer’s market/park.

Holding in a poop at the park because he wanted to stay there and not find a bathroom.

Telling him we couldn’t go back to the park after the bathroom because it was Father’s Day and we were going home to spend time with Dad.

My friend wrote back:

And it IS a lot of pressure… ‘it’s father’s day… be nice to dad, give dad a hug, we have to make x for dad…’ Whether it’s father’s day or a birthday or any other out of the ordinary day, it’s tough. I’m quite sure Howie was not being mean at all.

You would think at some point I would get this – truly get this – for Howie.  Clearly, I had anxieties about Father’s Day.  The split between wanting to make it special while also wanting to dive under the covers and hide.  In an attempt to make it the best day ever for Tim and forget why it was the hardest day ever for me, I whisked my kids out of here for the day. Out of their routine, out of their house, and ultimately out of sorts. The whole time telling them it was in the name of Father’s Day. The exact opposite of what I was trying to accomplish.

And so in one short honest sentence, Howie snapped it all back into focus for me.

Not mean.  Just the truth.

He wasn’t saying he wanted to be rude to Tim now that Father’s Day was over.  He was saying that it was too hard yesterday to hold it all together to be over the top perfect.

The pressure that was too much for me was too much for him too.

We’re back to our version of normal today, Howie and I.

Someone remind of this next year.

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Cause love’s such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure” – Under Pressure by David Bowie

(Two of two parts of a Father’s Day. Part one is here.)

Whomever said “time heals all wounds” was full of crap.

Same person who said “God only gives you what you can handle.”

Words with no meaning. Not to me.

It’s the 14th Father’s Day without my dad.

It doesn’t get easier.  I don’t miss him less.

The memories I want to recall are fading.

I close my eyes and I try to think back on Father’s Days of the past.  I can’t remember any.  I’m sure they were filled with homemade gifts.  And food.

But when my eyes are shut I can only remember those last days.  The incredibly difficult last family trip to Florida with a hastily planned one day cruise to the Bahamas.  Sitting in the bleachers for his last over-40 baseball game during that sweet spot between one round of chemotherapy and the next. I see the last moment that we had together.

I sit here at the end of this Father’s Day.  And I’m lonely. And angry.

He’s missed the things a father should have seen.  My wedding.  My brother’s wedding.  My sister driving.

He’s missed the things a grandfather should have seen.  Gerry’s first time pitching in his little league game.  Howie’s elaborate Hot Wheels track creations.  Lewis’ first laugh out loud joke.  My nephew’s first birthday.

A few months ago, my uncle was in town.  He’s my dad’s oldest brother.  He asked to come out and visit SenseAbility Gym, the nonprofit sensory gym we started for kids with special needs.  My uncle – all of my uncles – have been incredibly supportive since we had the idea.  I went to them for advice, support, and help and they all came through, just like they have for the past 14 years.

I watched my uncle at the gym.  He played with my boys, his grand-nephews.  He asked questions and offered suggestions.

He said he was proud of me.

A few weeks ago, my mother came to work with me at the gym.  A special educator herself, she jumped right in.  I watched her play with the kids.  Chat with the parents.  She connected with them and offered support and advice.

She said she was proud of me.

I am so honored and lucky that they are there with me.

But as I watched them both my anger was bubbling up inside. Not at them, of course. But at what should have been.

My dad was supposed to be here to see this. This gym came about because of the values and skills that he taught me.  Making the world a better place from the ground up.  Connecting and communicating with and within the community.  Standing up for what you believe in even when no one else has done it before.  And all the while remaining present for your children, your spouse, and your family.

It was not supposed to be this way.  This is not how the story goes.

In the last few minutes of this father’s day, I cry.  I’m missing the conversations, the laughter.  His voice.

Time is not healing these wounds.  In fact, it’s making them hurt more.

It’s a tale of two Father’s Days for me.

The joy of watching my kids say “Happy Father’s Day!” to their dad.

The pain of not being able to say that to my own.

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Lying in my bed I hear the clock tick,
And think of you
Caught up in circles confusion –
Is nothing new
Flashback – warm nights –
Almost left behind
Suitcases of memories,
Time after –

Sometimes you picture me –
I’m walking too far ahead
You’re calling to me, I can’t hear
What you’ve said –
Then you say – go slow –
I fall behind –
The second hand unwinds

If you’re lost you can look – and you will find me
Time after time
If you fall I will catch you – I’ll be waiting
Time after time” – Time After Time by Cyndi Lauper

(One of two parts of a Father’s Day)

Because you are always there.

Because you see what I miss.

Because you haven’t missed a baseball practice.  Or game.  Or school show. Or IEP meeting.

Because you read the reports and read between the lines.

Because you enjoy being the “mystery reader”.

Because when I find only the negative, you show me the glass half full.

Because you understand what “he’s out of sorts” means and how to help.

Because you understand our kids in ways I can’t.

Because you get it.

And when I am done

and can’t read one more report, one more home log, one more email

or change one more diaper, fight one more clothing battle, listen to one more scream

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You are there.

Not out of obligation.

But out of love.

Showing our kids what a dad should be.

And for that and eight million other reasons.

I love you.

Happy Father’s Day to the man who makes every day better.

You are the bearer of unconditional things
You held your breath and the door for me
Thanks for your patience

You’re the best listener that I’ve ever met
You’re my best friend
Best friend with benefits
What took me so long

You’ve already won me over in spite of me
And don’t be alarmed if I fall head over feet
Don’t be surprised if I love you for all that you are
I couldn’t help it
It’s all your fault” – Head Over Feet by Alanis Morisette