How to be a friend

When things were hardest for Helen, one of my greatest fears was that she would not have a friend. Ever.  Unable to consistently be close to even us, it seemed unlikely. Impossible, some days.

So we got to work. Social cues, facial expressions, practice, practice, practice. And it payed off.  Over time, there were children whose company she enjoyed. People she called friend.  But to be honest, I was always there,  Quietly redirecting.  Choosing the ideal times and friends who were kind, who tried to understand.  Then she started Preschool.  For the first time, she was on her own. One morning a week, she set out. And I prayed and held my breath until she came home. But its been so good.  She calls the other children friends and her teacher assures me she’s managing just fine.

Then, of course, it happened. She came home upset and refused to go back.   “Jack”, a little one in her class, had growled at her. A lot of times, momma. And I do not like him. Not anything unusual for a little boy, but it was a great offense to Helen.  It’s hard enough for her to understand typical behaviors, anything unexpected is too confusing. We talked (and talked) about all the things she could do; walk away, tell her teacher, play with another friend. How important it was that she be a good friend (in other words, reminders on no hitting, biting, etc.).  Preschool day rolled around and we were both reluctant.

Please let this be OK.

And it was.  She was all smiles when I picked her up.

How was your day?

Good! I played with Jack.

You did? I thought you didn’t like Jack.

I don’t. I was practicing being a good friend.

Good for you! What did you play?

Bears.

Well, bears. Fine. Relieved that it all seemed to work out, I moved on. It was much later in the day when I realized I’d almost missed it.

Bears growl. Like Jack.

Ignoring all my socially acceptable suggestions, she found a game Jack could play just as he was.

And isn’t that what we all want? Someone who will come along with no expectations or demands.  Someone who finds a game we already know how to play.

Once again, she is teacher and I am learning.  As for being a friend, I think she’ll be just fine.

The Birthday Party

Last week, Helen went to a birthday party.  Honestly, we usually decline these invitations because parties are just too much.  But we had two things going for us. First, the party was held at our church.  So, the place was familiar and I knew where to escape.  Second (and much more important), was that this family is the very best kind of people.  Their kindness has done more to bolster our family’s courage over the last 4 years than I can put in words.  So, we went.

I could tell you all the things we did to make it happen.  But, honestly, it’s the same as everything else: Prepare before, Recover after.

I could tell you about how she maintained eye contact, answered questions, followed directions.

But, really, the day came down to a small stuffed puppy and a blue balloon.  Party favors from the birthday girl.  Helen held them tightly in her hands all the way home.

Momma, I had fun with my friends!

I barely had her unbuckled and she was running up the driveway.

Daddy, I had fun!  I had cake.  Look, I got a puppy and a balloon!

When joy comes like fireworks, it’s easy to see it.  Weddings, new babies, the perfect job or first house.  And all those things are good and right to celebrate.  But those things don’t come so often.  And in the pause between, it can sometimes feel like nothing great is happening.  We finish one day to start the next and don’t see anything all that remarkable. But joy doesn’t always shout.  Miracles often whisper.  We have to be paying attention or they slip right by.  And then what we miss!

Today, joy came without a lot of fuss or fanfare.  But I saw it.  I watched it in my rearview mirror over and over on the way home.  It was a little stuffed dog, a blue balloon and a little girl who had fun with her friends.

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To Pieces…

Me: I love you to pieces, Helen.

Helen: That’s sad, momma.

Me: Why is that sad?

Helen: Pieces means your heart is broken.

Me: Oh, no! That’s just a silly way to say I love you very much.

Helen: Oh, ok. Then Momma, I love you to pieces.

(Smile…)

The Right Color

 

Helen was watching cartoons.  In this one, crayons dance across the screen filling in a black and white picture with the right colors.  Green grass, blue sky and so on.  If the wrong color is used (say, a purple sun), the eraser dances along to remove it and replace it with the right color.

All was fine. Until it wasn’t.  The crayons made the rubber duck pink, then along came Mr. Eraser.  Because everyone knows that rubber ducks are yellow. Except Helen.  She began ranting at our television.

Do not erase that.  What are you doing?  Rubber duckies do not have to be yellow.  They can be red.  They can be blue.  Momma, the eraser is wrong.  Rubber duckies do NOT have to be yellow! They can be pink!

And I smiled.  I smiled for Helen and for everyone one of you that dances to the music of a different making.

And so.

Dear Helen,

You tell them sweetheart!  And go ahead and be whatever color you want.

I love you,

Mom

 

 

Finding Peace

“Wishing you Love and Peace this Christmas!”  Matthew stood next to me reading the Christmas card we’d just received.
Momma, you have a lot of love. But you don’t have peace.
So much for hiding my heart from my child. But he was right. Especially during the holidays. All the things that make that time special become one more thing to juggle on this tightrope that is life with Helen. And I was done.
For several months I’d felt less and less control over the chaos. I’d tried every schedule, plan and prayer I could find to make our life work. And, in some ways, it did work. But the cost was high. And after four long years, I was far past the end of all I could do. So, with no other way out, I began to let go. And it terrified me. If things are this bad now, what would happen when I couldn’t make it work any more? What could I do differently?
But I had forgotten that some things are not ours for the choosing.
And I was so tired. I longed for peace. Just a moment where my body and mind and heart could just be still. But the harder I worked, the less it was felt.
Somewhere in the middle of a week of I’m-so-sick-I-can’t-stand-up, I gave up. Not in indifference, not in doing what was necessary. In fact, much of our day looked the same. Therapies still had to be done, after all. The difference was in me. I would do what needed to be done and not anything else. I couldn’t do anything else.
Planning and goals and to-do list all have their place. And if that is moving you toward where you need to be, I wish you the best. I really do.
But if it’s not.
If living from breakfast to bedtime takes everything in you and the days blur from one to the next, I hear you. So what to do?
I get up and breathe deep.
I love the people closest to me the best way I know how.
I make some move toward God. (Even if that move seems insignificant and feels uncertain, do it anyway. He sees. He cares. It counts.)
That is all.  And everything else? All the necessary things that fill our days? I look at that day, do what I can, and leave the rest for tomorrow.
Without all the trying to change what can’t be changed anyway, I found some quiet. And, as it turns out, sometimes quiet holds a little bit of peace.

The day she threw a fit…and why it was wonderful

Leaving the house  with Helen has never been easy.  Countless times we’ve barely begun a shopping trip before she is totally overwhelmed.  I’ve watched her completely shut down.  Rocking back and forth, pulling her own hair, biting her fingers, completely unresponsive to my voice. Or the opposite.  An intense combination of pain and fear sends her out of control, thrashing, kicking, banging her head against my chest over and over while she screams.  Or some awful combination of both.  No matter what, we’re all rushing out of the store to the car.  I’ve literally climbed on top of the car seat so that I could safely buckle her in without hurting her.  Then I’m driving home with hands gripped tightly to the steering wheel so they’ll stop shaking.  And Matthew, my sweet Matthew, hands over his ears, tears in his eyes.

Because we both know.  It can take hours, hours, to get her calm. And there’s nothing we can do about it.

And my very empty promises.  She’s ok, buddy. It’s going to get better, I promise.

I’m not sure who I most tried to convince.

It was bad.  So very bad.

But it’s getting better.  We understand more about her limits and how to help her.  So, when our Aunt gave the kids spending money, we were all excited to go toy shopping.  I prepared Helen for the trip, took our go-to therapy gear and went at a time I knew the stores would be quiet.

Perfect.  Until her question was met with a No. She turned her pretty lip into a pout, stomped her foot and tried again.

Still No.

Then it began.  A fake cry/half-wail with a few real tears thrown in for good measure.

It was wonderful.

She wasn’t frightened or in pain.  She wasn’t overwhelmed. She was just mad.  And she communicated what she felt to me. Do you have any idea how many miracles have to take place for that to happen? It was the first time in Helen’s entire life that a parenting situation made perfect sense.  Even Matthew noticed the difference.  At her first cry, he ran over to try all his big brother tricks and calm her down. But after just a minute, he turned to me grinning.

She’s totally fine, isn’t she, mom?  She’s just whining!

Yep.

I put her in the cart and we finished shopping, fake cry, intermittent wailing and all.  Matthew and I kept grinning at each other, relieved that this was the situation.  I’m sure we looked completely crazy.  (I did resist the urge to high-five strangers in the aisles.  Probably a good idea.)  We made it to the car and I easily buckled her in.  Driving home, I glanced at Matthew.   She was still crying, but he was completely relaxed and chatting about every detail of his “awesome new toy”.  And I knew.  I knew. We were already OK.

 

 

Life through the Lense (a peek at our week):

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We went on a field trip with our Homeschool group to the pet store.  Despite the noise, she really liked it.

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The boys camped in the backyard.  Helen and I stayed inside with fluffy pillows and Netflix.  To each his own.

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When this happens all the time, therapists blame “inefficient motor planning”.  I think that’s code for “frequent and / or mobile disasters”.

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Guess what Helen drew all this week? Pictures of she and I “toogever”.

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Surely and steadily, Matthew is working to teach Helen to write her name.  Good for him believing.

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And this is some of the candy given to my children by our sweet neighbor.  I hid it in the freezer and ate it myself.  They don’t know.  I have no regrets.

 

Conversation with Helen (and why literal thinking matters):

Me: Helen, Momma loves you to pieces.

Helen: That’s sad.  Pieces means your heart is broken.

Me: Oh, no!  That’s just a silly way to say “I love you very much”.

Helen: Oh, ok.  Well, momma, then I love you to pieces.

And so, good week.

Happy Weekend Everyone.

Alan and Jennifer