(Yes.  I know it’s been a while since I wrote. This summer was…hard.  For many reasons.  I have about 20 blog posts written in my head about, well, just about everything.  But every time I sat down to write, the words just couldn’t come.  Not writer’s block. More like censoring myself. I am now beginning to learn why it was so hard to write what I needed to get out any why I just couldn’t do it. )

This post is about letting it be.  And learning to let go.  Just a little.

Howie.  Every support needed for success in school this year is in place for him.  He was staying with his incredible teacher from last year for second grade this year.  He had two amazing aides assigned to work with him – teachers who have known him since preschool. The summer saw him regressing before our eyes in so many ways and he needed this setup to work for him.

It was the first year I went into school with no anxieties for him.

And because of that, I began to let go on controlling it all.

Instead of the mini bus, I’m driving him to school in the mornings to give him time to eat in the car and relax. Those first mornings I held my breath as he got out of the car and went in alone. Now, he walks into school by himself and waits with a friend (!!!!) in the cafeteria before school starts.  Supervised from afar by his aide, but waiting independently.  .

He’s asked his aides to sit back away from him in the classroom to give him the space to be himself and show what he can do. Like the other kids, he said. He’s learning to ask for breaks appropriately when he needs them.  He’s starting to understand what his body needs and when. He’s making friends.

He takes the bus home and listens to his iPod with Feel This Moment on loop and behaves appropriately.

Homework time is easier.  The calls from school are fewer and far between.

And I am breathing.

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I asked him what he was thinking about here. He told me “I’m just happy.”

Lewis.  Every plan for him last spring was for him to go to pre-K this year half days in the afternoon.  But after an outside evaluation found he needed more, the school proposed the full day pre-K inclusion class with more supports for social skills, speech and more opportunities to get him ready for kindergarten.  Everything I had planned for this school year was turned on its head.  He would be gone 6 hours a day, eating and toileting turned over to the school.

The teacher was Howie’s teacher for preschool.  The best of the best.  Eyes on him all day to help him navigate through all the areas that were still hard for him.

I started to let go. I held my breath and hugged him goodbye on that first day.

After only three weeks, Lewis is fully entrenched in the new routine.  Eating lunch and snack with friends.  Reading.  Singing.  Walking in and out without me.

Six full hours for me.  Alone.

And I am breathing.

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Thumbs up for being a big kid

Gerry. This week he is away with his sixth grade class.  The whole week.  He’s never been away for more than 12 hours even on that rare sleepover.  There’s no contact, no pictures.  He’s been anxious about this trip since 3rd grade.  But he wanted to go with everything he had.

The night before he left, every fear came out.  He begged me not to send him, to come up with an “out” for him.  He told me that he knew deep down that he needed to be there – no, wanted to be there.  But anxiety was winning.

I was that kid.  I was the one begging not to go to summer camp and then begging to come home.  I was the one who hated sleepovers with a passion. I was the one finding my mom on campus my first weekend of college, homesick as hell.

I still am that kid, struggling with my anxieties as I get in the car, or airplane, or even going for a walk.  Dealing with the fear of the unknown.

But I had to let it go.  Let him go.  I took a deep breath and told him he could do this.  That I knew he could win. There may have been a bribe (or three).

He got on that bus Monday with all of his classmates.

He comes home tomorrow.

And I am still breathing.

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I’m so proud of this kid.

With every step they take away from me, I learn how to take those steps alone.

And…

Their independence has become my new life line.

I’m able to work more at my business.

Work more on being a better wife.

And mother.

Work on getting back to me.

My first and last selfie. I straightened my hair - something I've wanted to do since I was three.

My first and last selfie. I straightened my hair – something I’ve wanted to do since I was three.

And with all that, the suffocation of summer is gone.

As is my inability to write here.

By letting it be and allowing them discover who they are, I’m now able to find me again.

Let it be, let it be
Ah let it be, yeah let it be
Whisper words of wisdom, let it be
And when the night is cloudy
There is still a light that shines on me
Shine on until tomorrow, let it be
I wake up to the sound of music,
Mother Mary comes to me
Speaking words of wisdom, let it be
Yeah let it be, let it be.” – Let It Be by The Beatles

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

When Gerry was a baby, I signed up for a free parenting class run by our local school district.  It was free and I was a new parent so I figured I was supposed to be there.

On the first day, the instructor gave us some homework.

We were to go home and look over a list of attributes and choose the ones that we felt were most important for our kids.  Our spouses were supposed to do the same.

The list looked something like this:

Please circle those words that you want for your child (check all that apply):
affectionate          talkative           sensitive
follower                  successful       quiet
shares easily         leader               active
even tempered    friendly            mature
self-confident      cheerful            eager to learn
independent        outgoing           happy

I remember sitting with Tim as we looked over the list.  He chose words like successful, self-confident, and independent.

I chose just one: happy.

**********

Gerry’s anxiety level always peaks around the third week of school.  I know this because it seems to happen just around “Back-to-School” night.  Every year since about second grade, I’m hunting down the adjustment counselor to ask her to check in on Gerry for the next few weeks.  The excitement of the new school year dies down and his anxiety about school work and friends goes sky high.  It manifests itself in difficulty sleeping, stomach aches, headaches and general grouchiness about anything and everything.

Then it calms down after about a week.  Every once in a while it flares and we make it through.  And then it’s better.

Last year, in fourth grade, it didn’t calm down as quickly.  He was really struggling.  He couldn’t focus in class, he was daydreaming, and when he’d click back in he was getting upset that he was missing the instruction.

The difficulty sleeping went on longer than usual.  As did the pleas to stay home.  I asked him what was happening and he said he just got lost in his thoughts and couldn’t turn off his brain, both at school and at home.

Every one told us that fourth grade was the year that all the issues came out.  The work gets harder and even the best students start to struggle.  And if there was any underlying anxieties or fear of failure…this is the year that we’d see it.

So we scheduled an appointment for a neuropsych evaluation.  Not because we suspected any disorder or concrete diagnosis, but because we wanted more information on how he processed information and where his strengths and challenges are.

You see, we’re old hats at all this testing stuff.  Having been through it with his two younger brothers and all.

Last January, Gerry sat through a whole day of tests.  One right after the other.

The results?  A little bit of anxiety here, a little Asperger-y there, a little bit of attentional issues over here, and a big gap in his verbal processing skills and his actual processing speed.  Meaning he has ideas in his head going a mile a minute but it’s hard for him to get it out verbally and on paper the way he wants it, leading to huge frustration levels and added pressure to succeed. No actual diagnosis but a clear understanding of where he does well and where he has challenges.

Oh and he needed glasses.  Part of the focus issue in the classroom was an actual focus issue.  He couldn’t see the board. Of course.

We talked with Gerry about the results of the testing.  Well, Tim did.  I couldn’t find the right words.  They talked about turning emotional problems into intellectual problems and working through them that way.  The strategies and accommodations suggested by the psychologist seemed to make sense to Gerry and the spring semester of school ended well.

And then came the last week of August.

**********

It started when we were on vacation.  We were renting a house on Cape Cod for a week.  I made him bring his summer work with him because of course he hadn’t touched it all summer long.

He worked on it for ten minutes, got angry, and walked away.  That night he was up until midnight and then back awake again from 2am until 4am.

His demeanor changed instantly.  The grumpiness returned.  The back talk.

The unhappy kid.

**********

Last week was the third week of fifth grade.  And right on cue, the anxiety reared its ugly head.  The who/what/where/why/how questions about school and band and piano came fast and furious. Gerry stopped sleeping.  Monday and Tuesday night he was up past 11pm, stuck in that spiral of “I have to go to bed/I can’t get to sleep/I have to get to bed/Now it’s so late I will never get any sleep/I can’t get to sleep”.  Crying.

I asked him to try to relax and visualize a place where he felt “happy”.  He was quiet a long time.

“The house,” he said. “Just in the house.”

He couldn’t find that place to retreat to to calm him.  He had nowhere that made him feel good.

Feeling a bit of sadness come over me, I said good night for the fourth time and left the room.

And I’ll admit it.  I was tired too.  My sympathy level was not there.  I told him he just needed to go to bed.  That I was done talking about it.

Ten minutes later, he came back into the room one more time.

“Mom,” he said. “I think I’d like to see a counselor.”

“Okay,” I said slowly. “What made you decide that?”

“I need someone to talk to about why I can’t sleep.  Someone like you.  But who won’t get mad at me.”

I stopped for a moment.  This was big.  And as ego-bruising as it was…he was right.  He needed someone other than me.

“Of course.  I’ll make some calls in the morning.”

Gerry turned back to bed and went right to sleep.

**********

The anxiety piece is the one I struggle with the most as a parent.  Both Gerry and Howie get incredibly anxious – it’s about different things and it manifests itself differently but it’s still there.  Howie’s behavior changes and he stims more.  Gerry hits me with question after question about what is going to happen next and when and with whom and the questions keep coming until he’s up all night thinking about it.

I struggle partly because I can’t make it better.

I mostly struggle because they get this from me.

And because of that…I knew this couldn’t wait any longer.  I had to find a way to get my happy kid again.

**********

This morning, I had an intake appointment with a counselor.  He seems like a great fit for Gerry and we set up a first appointment for them for next week.

I told Gerry about it this afternoon.  “He seems really nice and I think you’ll like him.”

“Oh good,” he said, barely looking up from his iPad.

“Are you feeling okay about this?”

He looked up at me.

“Yes.  Thank you.  I actually feel really happy.”

I couldn’t wish for anything more.

Happy Together

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here
Here comes the sun
Here comes the sun, and I say
It’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here
Here comes the sun
Here comes the sun, and I say
It’s all right” – Here Comes The Sun by The Beatles