Saturday, March 26, 2011

SNSS: My Brother, My Brother

Welcome to the launch of my first ever guest post series: Special Needs Sibling Saturdays. If you want to hear my thoughts behind its creation? Read this post that announces the series.

What it all boils down to: I've been feeling the need to read, think and learn more about sibling issues. And what better way to make sure I have the proper reading material than to ask some fabulous bloggers to write it for me?

When the idea for this series came to me, I thought of so many bloggers from the special needs parenting community that I would love to have the privilege of hosting. I also knew, immediately, who I wanted to ask to be my very first guest poster: the wonderful Alysia of Try Defying Gravity.

We all have those bloggers about whom we think "my sister from another family" and "my parallel lives Mom" and Alysia is that for me. 

Certainly not my doppelganger, there are differences: She is younger than me by more than a decade, she has three boys to my two (and none of them twins), she lives in a house just outside Boston not a small New York City apartment, her beloved father died years ago, way too young, versus my elderly father's recent passing. 

But when I read her, when she is speaking about her child on the autism spectrum, her other children, her pain over her father's loss, all I can think is: "YES! YES! YES! I could have written those words!" 

We have never met in real life (although hopefully, if all the stars align right, that will change in May) but I think of her as a dear friend, an important voice in my life.  That I have an intimate connection to the area of Vermont she grew up in? Just more icing on the delicious cake that is our burgeoning friendship.

I was thrilled when Alysia agreed to be my very first guest. Her lovely post captures so many of the contradictions that are just a part of life in a household where there are multiple children and special needs: the sweetness and the bitter.

Thank you, Alysia, for being my guinea pig here at The Squashed Bologna's Special Needs Sibling Saturdays. But I have been speaking for far too long, let me now turn this space over to Alysia, and her moving words:

My Brother, My Brother - by Alysia Butler

I’m sitting on the couch with my eight year old son.  We’re watching the PBS show “Arthur.”  It’s the episode where one of the characters, George, befriends a boy named Carl, who has Asperger’s.  I recorded the show a few weeks ago, even though we had watched it when it first came out last year.  

We’re watching the part where Carl gets upset about a missing piece from his puzzle, and has a meltdown that surprises George.  I look over at my son as he’s watching the show.

“Does that look familiar?” I ask him quietly.

“Yes.  I remember watching this last year.”

“No,” I said, “Does it look familiar from home?”  He glances at me, knowing where I’m heading with this.

“It’s all about a kid with…you know…” He looks at me but doesn’t want to say the word.

“With what?”

“With autism.  It reminds me of Howie.”

When Varda told me that she was starting a new feature on her blog called Sibling Saturdays, I was so excited.  And then when she asked me to be the first guest writer for the series, I was humbled and honored.

There was no way I could say no. After all, Varda is the one who suggested the book “The Strange Case of the Origami Yoda” for my Star Wars loving son, and I have her to thank for the copious amount of paper Yodas covering my house.

In many ways, Varda and I have similar lives.  We both have eight year old boys.  And we both have children on the autism spectrum.  So when she offered me the chance to talk about my three boys and how we deal with autism in our family, I immediately said “Yes.”

Now, I don’t have twin boys like Varda but I have an eight year old named Gerry, a four year old named Howie, and Lewis is our two year old.  My middle son Howie is on the spectrum.

The “Arthur” episode ends and the “Now a word from us kids” part of the show comes on.  It’s a two or three minute segment highlighting real kids who can relate to what the “Arthur” characters experienced.  This time, it’s two girls on the spectrum.  

One is talking about how horseback riding has helped her with her autism.  Another one is showing off her inclusion classroom in her school.  The girl shows the camera the different accommodations she has in the classroom to help her with her sensory difficulties and her organizational skills. 

Again, I turn to look at Gerry.  He’s fiddling with a toy but he’s still watching the show intently. 

“When Howie goes to kindergarten next year at your school, those are the kinds of things they’ll do for him there so he can be in a regular kindergarten classroom like you were in.”

He looks at me in a panic.  “He’ll be in a regular classroom? Are you sure?”

I say yes, he’ll be in an inclusion classroom, and I take a moment to explain what that is.  I tell him they’ll be going to school now at the same time, but that Howie will take the special education van to school, instead of the regular bus.

“Oh, phew.”  The panic look turns to relief.  I ask him to explain.

“I was worried about him being on the bus.  He could get yelled at.  At least one kid a day gets yelled at on the bus.”

Originally I thought his panic was about being embarrassed by his brother.  I realize now it was about protecting him, and worrying about him becoming too overloaded on the bus.

Since our son Howie’s diagnosis in December 2009, we’ve been pretty up front with Gerry about the whole thing.  We had to.  Things were about to be very different in our household – from visual schedules to new therapists to a change in our approach to parenting.  Gerry was becoming increasingly frustrated by Howie’s behavior, and we had to explain to him what was happening and why his brother acted the way he did.

We gave him some books and talked about how his brother’s brain is wired differently, and the things that come easily for other kids would be a bit harder for Howie.  We showed him the new tools that we had to help his brother and told him that as a family, we’d work through this together. 

It was one of the hardest conversations I’ve ever had as a parent.  And that conversation continues almost every day.

Gerry has made some huge improvements in his understanding of autism and how it affects his brother.  We’ve gone from him saying things like “I think we need an autism specialist in here!” when he got frustrated teaching his brother a new game to now he tells me that “wrestling on the floor together helps Howie with his autism.”  We’ve always made sure he’s part of the conversation when therapists and teachers come to the house so he’s in the loop.

But it’s not always perfect.  Almost once a day we have to remind Gerry that his brother’s verbal stimming and need for constant hugs isn’t something that he can control.  I end many days in tears because I’m pulled in three different directions with each of my boys wanting something, but Howie’s needs always seem to come first.

Gerry does his homework upstairs away from the rest of us because the early evening chaos makes it too hard for him to concentrate.  Two or three times a week, my boys eat dinner in different rooms because Gerry just can’t take Howie’s behavior at the table.

Those are the moments that rip me open inside as a parent. 

We’re only a year into this, and we’re figuring it all out.  As my husband told my son one night: “Howie can’t help what he’s doing, and if there was a way to magically fix it all, we would.  We’re a family.  And families work together and help each other, no matter how frustrating it can be.”

It’s later on that night and all three boys are playing in our toy room.  They have out a play tent, and have created a home for their Club Penguin toy puffles.  All three are working together to create a puffle house – adding couches, laying out toy food, and making silly puffle games.  

I hear laughter.  I see my boys playing nicely together, interacting like “normal” siblings would.  It is a ten minute glimpse into what life is like in other homes. 

I turn off my autism mom brain for a moment so that instead of seeing pretend play and social interactions, I just see my three boys being brothers.  For that brief moment, I am just a mom to my three sons.   

And it. is. awesome.
“I know that we are different, and we've gone our separate way 

But we've got to learn to accept each other, for who we are today 

I know it won't be easy, but we both have got to try 

To hold onto each other, until the day we die 

Nobody knows you quite the way that I do 
And if you're in trouble, come to me, come to me 

My Brother, my Brother, whatcha gonna do 

My Brother, my Brother, I'm here to help you 

Tell me your sorrows, tell me your fears 

My Brother, my Brother, I'll always be here” – My Brother, My Brother by Aaron Neville.


Remember what I said in my intro about parallel lives? Reading Alysia's post I just had to laugh at the end, because right now? My sons are obsessed with Club Penguin and puffles. I've even mentioned them in recent posts.

I am particularly touched by her husband's words at the end
"We’re a family. And families work together and help each other, no matter how frustrating it can be.” And also somewhat envious. 

Right now our family is far from functioning as a cohesive therapeutic unit, and Jacob's brother Ethan rarely exhibits her son Gerry's depth of understanding and concern for his autistic brother Howie. But it's inspiring to read about and I aspire for our family to move in this direction.

Also, did you note that song at the end? That's Alysia's blogging signature; all her post titles are song titles, and she ends each post with the lyrics that have inspired her. Want to read more? You should!  

Go to her blog, and enjoy. If you want more posts about siblings? There is this lovely one, thinking ahead to her son's upcoming transition to Kindergarten, or this one about watching her younger son's development overtake his middle brother's. And then this one will simultaneously break and melt your heart.  

An active member of the Special Needs parenting community, Alysia can also be found posting at Hopeful Parents and the SPD Blogger Network. Finally? Follow her on Twitter and like her on Facebook.

Thank you again, Alysia for being my very first guest blogger here, for helping to launch Special Needs Sibling Saturdays so spectacularly, and with such soul. 

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