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…)

Umi-goggles on! Little Bear? You see Little Bear, saaaaaay LITTLE BEAR!

I made the call.  But this time it was to cancel an appointment, not make one.

The quote above?  From my 2 year old Lewis.  He’s not just talking now.  He’s speaking, having conversations, and using lines from TV shows and making them his own.  This spontaneous phrase combined a line from the Nick Jr. show “Team Umizoomi” with a picture from his Little Bear toothpaste container.  He put his arms up to his eyes for the goggles, and tried to look for his toothpaste.

The canceled appointment?  His scheduled meeting with the zero-to-three developmental clinic for an autism evaluation.

The appointment had been recommended to us by Howie’s developmental pediatrician when I expressed concerns about Lewis’ language delay.  Remember her?  She’s the one that called me “Super Mom“.  At the time the appointment seemed like the fastest way in to see a speech/language pathologist, but she also mentioned that a full evaluation would be a good idea, considering Howie’s diagnosis.

It took me a long time to send in the paperwork.  I couldn’t put Lewis’ picture on the forms.  I couldn’t go through it all again.

But I finally put the package in the mail.  Without the picture.  And two weeks later I received the appointment date and time.  March 21st.

In the time since I mailed the papers, we’ve seen an explosion of language and development.  And now, I see none of the red flags of autism.  None.

I see pretend play as he zooms a car around the house and makes rumbling noises, or pours me a cup of pretend tea.  I see the ability to follow first/then commands and multi-step directions when I ask him to get his shoes, bring them to me, and then we’ll go outside.  I see tantrums caused by his inability to have a toy rather than meltdowns triggered by his inability to control his body.  I see him look me in the eye when we talk and I feel him hug me out of love.  I see an understanding of emotions when he draws a happy face and labels it “happy!”.

Yes, he’s drawing.  Recognizable faces.  And he can make the letter “L”.  From following my instructions.

All the “appropriate” developmental milestones for a two year old.  That’s what we’re seeing now.

I’m trying so hard to focus on how wonderful that is, and not that we’re still working on many of those milestones with Howie.  Our almost five year old.  They are almost evenly matched now in the social development area.  That’s still hard to face.  Because it won’t be long before Lewis moves ahead of Howie in many areas.  And then where will we be?

Mom! Mom! Get coat and go Kyle’s house!

This was yesterday.  Lewis grabbed his coat and handed it to me, asking to go to his friend’s house.  I was bursting with pride.  How could I say no?  He and I now have conversations, share cups of “hot toffee (coffee)”, read books and sing along to Glee together.  The articulation isn’t quite there yet, so I’m still going to have early intervention back when he’s 30 months old, just to make sure he’s on track for his age.  Just because I can understand him doesn’t mean the rest of the world can.

Right now, though, I’ll take it.  It was so different from where we were a year ago with him.  That’s why I canceled the appointment.

Last month, I wrote a post called Mother’s Intuition about learning to trust your gut when something’s wrong with your child.  I’m using my mother’s intuition again.  This time, however, it’s to say that everything is going to be okay.

I may be wrong.  But my eyes are wide open and I will be looking for any and every sign along the way.  And if I see something that makes me nervous, I know I’ll have the strength to trust my gut and make the call once again.

Two Boys in a Snack Tent

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.” – I Can See Clearly Now by Johnny Nash

“I was just trying to get him out of the house and he had to have his particular pair of shoes…I just wanted to forget about it all for one damn day.” – Adam Braverman character from the Parenthood episode “Qualities and Difficulties“.

Just wanted to forget about it for one damn day.

Many families who have kids on the spectrum tuned in to this week’s Parenthood episode.  It was previewed as the one where the character Max learns he has Asperger’s.  I chatted with many friends of mine before the show – would we watch?  Could we watch?  I ultimately decided that I had to watch, and armed myself with a bowl of ice cream and thin mints to make it through.

For me, however, the more striking part of the show was not the conversation about Asperger’s.  It was a scene in the middle of show between the dad and Max.

(slight spoiler alert…I won’t go into details of the scene, but if you haven’t watched the show and plan to, you might want to step away for a moment)

In the show, Max’s father Adam was trying to get them out the door for school and Max couldn’t find his shoes.  His dad, sensing Max’s rigidity of schedule, decides they will blow off school and spend the day at the amusement park riding roller coasters.  The day goes fine until something happens and they can’t ride the coaster.  Max has an epic meltdown in the middle of the park, and can’t recover.

Later on, when talking to his wife about the day, he says this line : “I just wanted to forget about it all for one damn day.”

While I had been teary through most of the show to this point, this is when I really started to cry.  This part is what hit home the most for me.  Because he wasn’t saying he wanted his son to forget about it for one day, he was saying that HE wanted to.  The dad.  I knew exactly what he meant.

Because I want that too.  I just want one day – one thing – to be easy.

This hit me like a ton of bricks a few weeks ago when Tim went out of town to buy a car.  It was in Chicago, so he had to fly out there and then drive the 16 hours back with it.  I suggested he take Gerry with him, as a sort of father-son bonding experience.  For the trip, I packed a small backpack for Gerry with a change of clothes, a few books, a camera, and a notebook.  Tim loaded a few Star Wars movies onto his phone.  We told him about the trip about a week ahead of time, and off they went.  Easy.

If that was Howie, we’d have bags of just food that he can eat, his vitamins, his melatonin, his special music, noise-canceling headphones, several changes of clothes, and two or three social stories. And that’s if we could even get him on the plane.  Or into the car.  Or, in this case, taking him was not an option at all.

We can’t just “pack up and go”.  The days that go smoothly – or that seem to go smoothly – are the days where I have carefully scripted every single moment.  We don’t try anything new.  We go to the same restaurants where we know we can eat.  We go to the same amusement park every summer because we know it so well and stay in the same hotel.  We go to the same playspace every year for his birthday party.  We’ve talked about taking a different kind of vacation this summer, but the sheer amount of work involved for all three kids to be happy is paralyzing.  If it was just my son, maybe we’d branch out a little more.  But his meltdowns don’t just affect him, they affect the whole family.

(I’m sure some of you are thinking that maybe if we didn’t micro-manage everything, that he’d learn to adapt to change.  Maybe.  Maybe not.  Experience tells us otherwise.  We’re working on it.  I have to be aware of his abilities at 4 years old.  And what the rest of my family can absorb at this time.)

These thoughts had been swirling around my head when my friend Patty wrote a post called I Just Want Easy.  She wrote that she just wanted one area of her son’s life to go smoothly without any help from her.  I understood so completely.  In my response to her, I wrote “I feel like the only times when things do go smoothly is when I’ve completely hyper-managed the situation.”

And that gets back to the episode of Parenthood.    His wife warned him that he was “going rogue”, that the change in schedule would be really detrimental to Max’s well being.  The dad just wanted a break.  For his son and for himself.  He just wanted them to be father and son, out at an amusement park, having a good time like all the other families.  One family’s “normal” is another family’s “going rogue”.

I felt this again at a kindergarten information meeting.  While all the other parents were worried about their kids remembering their PIN number to buy lunch, I was worried that my son wouldn’t even be able to be in the cafeteria with the noise, smells and people.  Other parents wondered where their bus stop would be.  I wondered if we’d be able to get out of the house on time to meet the special ed van.  One parent was curious how the kids moved from the classroom to gym, art, and the library.  I was curious how my son would get his sensory breaks and OT time.   Other parents think about the big transition from preschool to kindergarten.  I think about every little transition during the day from the moment my son wakes up until he goes to sleep.

Sigh.

“Going rogue”.  Just for one day.   Going off script and just doing something crazy.  Like wearing different shoes.  Or eating a different kind of sandwich.  Or sitting in a different chair.

I knew parenting wasn’t going to be easy.  But, for one day, I’d like it to not be so damn hard.

Take it easy, take it easy
Don’t let the sound of your own wheels
drive you crazy
Lighten up while you still can
don’t even try to understand
Just find a place to make your stand
and take it easy” – Take It Easy by The Eagles

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