March 2011


So many of my posts are filled with stories about my boys – all three of them.  It’s what this blog is all about, after all.

Watching my oldest and my youngest struggle with their brother’s autism diagnosis has been the most difficult thing for me.

When I first read the blog The Squashed Bologna, written by the amazing Varda, I felt an instant connection to her story.  She was also writing about her boys – twins.  One of her twins has autism, the other does not.  Her stories were like mine.  We both felt the tug of wanting to be there for one child, but needing to be there for another.  We both felt the sadness when one child hit developmental milestones that the other did not.  We both just wanted one day when things would be easy for us and our boys.

So when she approached me to be the first writer in her Special Needs Sibling Saturday, I instantly said yes.  Actually, YES PLEASE!

Today is that day.  Please visit me over at Special Needs Sibling Saturday at The Squashed Bologna.  And while you’re there, read Varda’s posts.  Her stories, her photos and her love for her boys warrants a long stay.  I am so honored to call her my friend.

Special Needs Sibling SaturdayClick Here for My Brother, My Brother

Yesterday, an amazing thing happened.

Yesterday, a few moms and dads got together, used the power of their combined voices and made a difference.

A friend got her copy of the April issue of Parents magazine in the mail, and realized that there was no mention at all of April being Autism Awareness Month.  No stories, nothing at all.  She sent us a note.  And posted her dismay on the Parents Facebook page.

We followed.  Many of us did, in fact.  We told Parents magazine that we were disappointed.  We were sad.  We felt that Parents magazine no longer spoke to families like ours.  I said I was letting my subscription lapse.  They had missed a huge opportunity to connect with families, and maybe help parents who are struggling to understand what’s going on with their kids.  Their initial response was that they had an advertisement for a bed tent for children with autism in this issue, and they were planning two online articles.

We told them that wasn’t enough.  In fact, that was condescending.  And even more disappointing.

We bombarded them with Facebook posts and messages on Twitter.

Guess what?  They listened.

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email FacebookSupport@meredith.com with the following information:

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

Is it enough?  Not really.  It’s still online content only.  But it’s a start.  We came together with the same message and someone listened.

Now it’s time for us to follow through.  If you want, send them your story.  Let them know that it wasn’t just a few of us.  Tell them how autism has changed your life – the good, the bad and the ugly.  Tell them that autism affects the whole family – mothers, fathers, siblings, aunts, uncles, and grandparents.  Tell them how you fight every day for your child to get what he or she needs to get through school and home life.  Tell them our kids matter – that they are special, sensational, amazing human beings that deserve to be highlighted in their magazine now and all the time.

And remind them that you hope to see a print version of this next April.  Because I’ll be renewing my subscription for one more year.  Hoping they do the right thing in 2012.

A huge shout out to my incredible friends who didn’t back down.

The moral of the story?  Don’t ever underestimate the power of our voices to speak for our children.  When we speak loud enough – and together – people listen.

“Shout, shout, let it all out, these are the things I can do without
Come on, I’m talking to you, come on
Shout, shout, let it all out, these are the things I can do without” – Shout by Tears for Fears

Yes, my husband rocks.  So much so that my post on envy, love and the sensory diet is up on the SPD Blogger Network today.  So if you missed it the first time, check out the great pictures of my son and my husband…all taken by me.  From the doorway looking in…

 

SPD Blogger Network Post

You Can't Always Get What You Want

Click Here for You Can’t Always Get What You Want

And while you’re there, check out some of the other amazing posts by parents of kids with SPD.  If you have a child with sensory processing disorder, think about writing for us.  You don’t need to be a blogger already.  Just a mom or a dad with a story to tell.  We want to hear it.

I have seen the promised land of therapy rooms.

I have visited these amazing basements equipped with swings, trampolines, a trapeze and quiet tent spaces.  Rooms filled with sensory balls and body socks and noise canceling headphones.  I have stood in the doorways of these spaces but have never crossed in.

Because it’s not my house.  Thou shall not covet thy neighbor’s therapy room.

I’m over at Hartley’s Life With 3 Boys with the rest of the story…I’m wanting what I can’t have.

You Can't Always Get What You Want

Click Here for You Can’t Always Get What You Want

It’s the 17th of the month and I’m back with my regularly scheduled post at Hopeful Parents.  I’m still talking about birthdays.  This time, it’s about birthday parties.  And friends.  And birthday parties with friends.

Come read it at:

 

Hopeful Parents
Find Out Who Your Friends Are

Click Here for Find Out Who Your Friends Are

I’m interrupting my regularly scheduled Hopeful Parents posting day to pass along an important letter from a friend of mine.  Jess, who writes at A Diary of a Mom, wrote this amazing letter to President Obama.  She’s asking him to “Light It Up Blue” at the White House on April 2nd for World Autism Awareness Day.

She asked those of us who support this idea to comment on her letter.

I’m asking you too.

Here’s the comment I left:

Jess speaks for the thousands of us parents out here looking to you to lead the way. Showing your support by “Lighting It Up Blue” would not only show parents that you are with us, but our children too.

Mr. President, my eight year old son needs to see that you understand what we’re going through as a family. His four-year-old brother has autism, and he sees the challenges his brother faces and asks constantly if there’s ways we can help. My oldest child alternates between being frustrated by his brother’s behavior and being protective and supportive. He has done it in silence because he doesn’t want any of his friends to know about his brother.

But just recently, for the first time ever, he asked his teacher how they were going to commemorate Autism Awareness month in April. For the first time, he’s going public with it.

Mr. President, if my eight-year-old son wants to Light It Up Blue, don’t you think you can too? If only to show the siblings that autism is nothing to be ashamed of? That there’s nothing more important than supporting their brothers and sisters in their daily struggles?

Thank you.
Sincerely, Alysia (mother of three boys)

Please join the hundreds of people who are urging the President to Light It Up Blue, for just one day.  Together, as one voice, we can make a statement for awareness.

Click Here for Light The White House Blue

Tomorrow is a special day.

Tomorrow, Howie turns five.

So many of my posts are filled with how difficult life is for him.  How his autism and sensory processing disorder cause everyday activities to be so challenging.

Not today.

I have a feeling I’ll be a bit busy tomorrow managing the whole birthday thing.  So while I have a corn-free cake cooking in the oven today, I thought I’d tell you all the amazing things about my son.  What makes him a rock star.  And what makes me proud to be his mom.

  • He has the most amazing giant brown eyes, and when he looks at you, you get lost in them.
  • His passion for Hot Wheels cars is unmatched.  He knows every single one that we have in the house.  We have a lot.
  • His memory is impeccable.  Ask him what rides we did at Storyland last summer and he’ll tell you them all and where they are in the park.  Ask him what happened at his birthday party last year when the lady forgot about our party and the doors were locked.  Ask him where all the satellite dishes are in our town.
  • His laugh is contagious.  When he giggles, everyone else around starts giggling too.
  • His teachers love him.  Actually, any adult that has met him loves him.  He draws you in immediately without any pretenses.  And will call you on your crap in an instant.
  • He loves his family above all else.  He shows it with these giant squeezy hugs that go on forever and ever.
  • (from my husband) He is always happy and positive, and willing to play at anything.
  • He has the greatest names for things.  Our recliner is “the green chair”.  Pita bread is “the bread that we had at my friend Stevie’s party.”
  • His imagination is amazing.  He can create elaborate racetracks for his Hot Wheels cars and fantastic stories to go along with the track setup.
  • He doesn’t exclude anyone, and will stand up for his friends when they are in trouble.
  • Every kid in his class knows his name.
  • He is totally rocking the 3T pants now.
  • He yells at his older brother when he forgets to flush the toilet.
  • His mind works in the most amazing ways, and has such a curiosity about life.  He can stare for hours at the pipes in under our sink or at his school, and he’s actually thinking about where all the water goes and what happens to it after it leaves the pipes.
  • He wanted to wait until his birthday to open his presents that arrived early because it wasn’t his actual birthday day.  And that he wanted to thank the “mail lady” for delivering the package to him.
  • Every night, as he’s falling asleep, I lay next to him in bed.  And the last thing he says before he falls asleep is always “I love you, too, Mom.”

And how have I changed in these five years?

  • I’ve learned that patience is more than a virtue.  It’s a skill that needs to be practiced over and over again. But the rewards are amazing.
  • I no longer judge.  Anyone.  Ever.  (or at least out loud)
  • He’s shown me the beauty in the little things: to slow down for a walk to pick up an acorn or to take the long way home to hear the end of a song.
  • He’s introduced me to some of the most amazing people I’ve ever met.  People who I want to have as friends.  People who understand and accept us for us.
  • I now celebrate the accomplishments in our own time, not because some book told us when it was supposed to happen.
  • I try to use the words “child-appropriate”, instead of “age-appropriate”.
  • I have learned that there’s nothing better than a hug out of love.
  • He helped me find my voice – here on this blog and with other newly diagnosed parents.
  • He’s shown me that the most important job we can have as a parent is to be our child’s best advocate.  To speak for them when they cannot.  And to fight to the end to get them the help they need.

And above all else…

  • He has made me a better wife, mother, and friend.  I would not be the person I am today had this gift not entered my life five years ago.

Happy Birthday to my little man.

smiling at Storyland

People see me
I’m a challenge to your balance
I’m over your heads
How I confound you and astound you
To know I must be one of the wonders
Of God’s own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way” – Wonder by Natalie Merchant

(this post was inspired by my friend Stimey, who asked a few of us to share our favorite things about our kids.  Her kids are rock stars too…)

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