Saturday, October 1, 2011

SNSS: Fragile Brothers, Strong Sister

My SNSS guest today, Bonnie, has a lot in common with the other Autism Moms whose posts have appeared here. But she also has much in common with a very different segment of the Special Needs parenting population, too.  

That is because not only are Bonnie's identical twin sons on the autism spectrum, but they also have a genetic condition: Fragile X Syndrome.

Bonnie writes all about life with her 6 year-old twins and their older sister in her blog, The Fragile X Files, with love, compassion and honesty. 

Her wonderful boys are especially challenging, with aggressive behaviors born of their deep anxieties, major sensory issues and tremendous struggles with communication and language. Her older daughter Aliza is an amazing girl, compassionate and caring with her brothers, a mini-therapist, a true friend. 

Come read as Bonnie beautifully shares her family, bound by fierce love and loyalty, with us here, today:


Fragile Brothers, Strong Sister - by Bonnie

I have identical twin boys with Fragile X Syndrome and autism.  They are six years old.  Fragile X is the most common known genetic cause of autism.  They are adventurous, hyperactive, adorable, aggravating, sweet, affectionate, anxiety-ridden, and very special.

But this isn't about them.  It's about their 8-year-old sister, Aliza.

Aliza's sibling experience is quite a bit different from most of her friends'.  Her brothers don't play with her much.  They don't tease her or mess up her room.  They don't take her toys.

They do pinch and sometimes bite her.  They scream and demand to get their way and usually they get it, because they are louder and more stubborn than she is, and let's face it - there are two of them.

She sees the world quite a bit differently than most kids.  You know "Welcome to Holland?"  She knows Holland inside and out.  She knows what sensory processing disorder is.  She knows what an IEP is.  She knows the procedures for ABA (applied behavioral analysis).  She knows hyperactivity when she sees it.

Other little girls like to play "mommy" or "doctor" or "school" with their dolls and their friends.  Aliza plays "occupational therapist."

She's extremely perceptive.  Her brother Zack has a tendency to reach out to strangers in stores, and pinch their arms.  If he's within reach of someone, more than likely they will be a target.  Aliza knows this and when we are shopping, she'll discretely put herself between Zack and other shoppers.  She does this, knowing he might very well just pinch her.

I can't tell you how my heart bursts when I see her do this.  Without my even asking her to.  I'm so proud of her I could explode.

Sometimes they are a real drag on her good times.  We end up leaving parks and malls and parties early because her brothers can't tolerate crowded or loud places.  I have tried volunteering at her school a couple of times when I had to bring the boys along, but they screamed, and it embarrassed her.

I didn't plan for her to be the big sister of kids with special needs. But, planned or not, she's taken to that role pretty well.  She not only reaches out to her brothers to play with them the way they play, but she helps them to find their way in this not-always-accepting-of-differences kind of world.

Her dad and I, along with her grandparents, work hard to make sure she feels special too, and gets plenty of opportunities to live her life fully, despite the ways her brothers disabilities limit our family.  Whenever possible, we take two cars to every event and outing.  If the boys have to leave, one of us stays with Aliza.

We try to make sure she gets to have as normal a life as possible.

Even though some days it's anything but.


Reading this post, I must admit to feeling no small part of envy for how sensitive and caretaking of her brothers Aliza is. I know that every family is unique and that an older sister and a twin brother are very different entities. 

But still, I only hope that some day Ethan can follow in her footsteps, that he will feel more empathy and less antipathy for his brother. 

Having read Bonnie here, you'll want to follow her home to her blog, The Fragile X Files, and have a good read.

You may want to start with this moving post about how in the world to answer people who ask "How are the Boys doing?"

Or try this beautiful tribute to Aliza and her sisterly skills, or this lovely post about taking care of her sons, a meditation on sensory brushing.

Also, you should go follow Bonnie on Twitter where she tweets as @FragileXFiles and come like her Facebook Fan Page, too.

Thank you so much, Bonnie, for this sharing of your lovely, special family with us today.

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