April 2011


“We’re selling the boat.  Trying not to be completely sad about it.”

That was my Facebook status yesterday as my husband pulled the boat out of the garage to clean it up so we could sell it.  It was the first time the boat had been outside of that garage in five years.

That’s when we moved here.  It’s been five years.  It’s actually been six years since we’ve used the boat.  Clearly, it’s time to sell it.

But it’s making me very sad.

I’m not usually the sentimental type to get attached to things.  There isn’t much in his house that I’m connected too, except maybe our green recliner.  But there’s a lot of emotion tied up for me with that boat. The first (only?) vacation that Tim and I took together as a couple was a week on a New Hampshire lake with friends.  Summers were spent out on that boat – camping at the marina at night and lazily floating in the sandbar during the day, working on crossword puzzles and reading the newspaper.  Much of our pre-kid time was centered on boating.

I suppose there’s a lot of emotion tied up with boats in general for me.  I remember being twelve or thirteen and going to get my family’s first ski boat.  We picked it up on a particularly windy day and took hours motoring back to our marina, closely hugging the shores of Lake Champlain.  My father taught us how to waterski off of that boat, and how to navigate the choppy waters of the lake.  We would spend weekends with my cousins going back and forth in a tiny cove on the New York side of the lake.  He taught me how to dock the boat and how to tie the knots to hold it tight.

I also remember it being a money pit and it needing constant maintenance.  As we got older we used the boat less and less.  When the marina fees jumped in price, we no longer kept the boat at the dock.  The more time it took to take the boat out, the less time we actually used it.  And eventually, my parents got rid of it.  It just wasn’t worth it anymore.

And that’s where we are now with our boat.  We’re now over two hours from our old lake.  What was once a manageable trip is now a ridiculous undertaking.  Under the best of circumstances.  Hours in the car for potentially a short amount of time on the water.  Hundreds of dollars in fuel now that gas prices are so high.  Boat insurance.  Time spent just getting the boat ready for the trip.  Add in the unpredictable nature of autism and SPD and three young boys who have never been boating before…

I’m not blaming this on my son’s autism and SPD.  But I can’t say that it’s not a factor in all of this.  Because autism and SPD are a part of him and a part of our family.  It has changed how we view…everything.  It’s weaved through everything we plan and do together.  I can’t just dismiss it and think he’ll be fine.  And I can’t dismiss how my other two kids would react if my son falls apart.

Sigh.

There are dozens of reasons to get rid of the boat.   There’s just one reason to keep it.

I feel like I’m giving up.  I feel like I’ve failed.

Boating as a family has always been my dream.  We don’t ski, or camp, or spend summers at the beach.  Boating was going to be our thing.  I had visions of spending time with the boys at a rented house on a lake every summer.  Watching Tim teach them how to swim, and ski, and tie knots.  Pictures of them driving the boat around the cove.  Laughing as we told them it was okay to pee in the lake.

Selling the boat feels like I’m selling that dream.  It’s the final realization that our family just can’t do all the things I thought we would do.  We already skip family gatherings, birthday parties, and other events because it’s just too hard.   I held tight to that boat in the garage because it was holding onto the last symbol of what I thought our family was supposed to be.

Friends have been telling us to sell the boat for years.  “Wouldn’t you like to have your car in the garage?”, they’d ask.

I don’t care about having a spot for my car.  I care about finding that one activity that pulls my family together as one.

I’m trying to see this as a dream deferred.  It’s just not the right time for our family to own a boat.  I know we can find something else that we can all do together.  Something that works for every single member of our five person crew.

And maybe someday the time will be right again for us to have a boat.  Maybe when the kids are older.  Or maybe when they have kids.

I’m going to let the boat go.

It’s just a boat, right?  It’s just a boat.

“It’s not far to never never land
No reason to pretend
And if the wind is right you can find the joy
Of innocence again
The canvas can do miracles
Just you wait and see
Believe me

Sailing
Takes me away
To where I’ve always heard it could be
Just a dream and the wind to carry me
And soon I will be free” – Sailing by Christopher Cross

Happy Passover!

I’m over at the SPD Blogger Network today for the start of Passover.  And just like the Seder night is different from all other nights, my son is different from all other children.  Come read my plans for a successful and sensory-friendly Passover night.

(and I’m breaking with tradition here by not using a song title.  Somehow the traditional songs of Let My People Go and Dayenu just didn’t have that mass appeal…)

SPD Blogger Network Post

Why Is This Night Different From All Other Nights?

Click HERE to read Why Is This Night Different From All Other Nights?

So…how do you turn the autism radar off?

It’s a question I asked my brilliant and seasoned autism mom friends.  Come read their answers and advice to me at Hopeful Parents today.  It is the 17th of the month, you know.

Hopeful Parents

Suddenly I See

Click HERE for Suddenly I See

Awareness is cropping up everywhere.

Top 25 Autism Blogs from Babble

I am so honored to be on this list.  Click on the picture and you’ll see the full list of twenty-five blogs.  Many of them are friends of mine.  Some of them I’ve been reading since we started on this autism journey back in December 2009.  A few of them were new to me.  But not anymore.

This list is part of a series of posts from Babble for Autism Awareness Month.  They’ve had a list of the Top 30 Facebook Pages for Autism Awareness, a story from a dad coming to terms with his son’s diagnosis, and an essay from a mom who is not afraid of the “a-word“.  They’ve also posted red flag lists and resource information on their website and Facebook page for EVERY ONE of their readers to see.

I think that’s pretty impressive.

So take a minute to click around on their site.  And take a second to thank them for using their platform to spread awareness and understanding to all their subscribers.

Thank you, Babble.  For this great honor and for sharing our stories with your readers.

And I found myself in places I thought I’d never go
Surrounded by strangers I was so far from home
And I don’t know how you found me
All I know is I owe everything to you
Yes I do” – Thank You by Keith Urban (from his album Defying Gravity)

If a blog has a birthday and its frazzled overwhelmed writer misses it, does she get kicked out of the blogging club?

According to my e-mail archives, I’ve been writing this blog for over a year now, since March 23rd, 2010.  And I didn’t even know it.   I guess I thought WordPress would send me an e-mail.  Something like “Hey!  Guess what!  We’ve been hosting your little blog for a year now for free…when are you going to upgrade and send us some money?”

I need reminders like that or I miss things.  Or maybe I just need a personal assistant.

Anyway, on the occasion of this blog’s 55th week in existence, I thought I’d take a little look back.

I had written a few things before starting this blog last year, including a piece for The Boston Globe Magazine and one for Autism Speaks, which is now included in their 100 day Kit.  There was something cathartic about sharing our story for the first time.  I was finding that I needed a space to write more, just to get the words out of my head.  At this point, we were only three months into my son’s autism diagnosis.

Through my extensive research on autism (thank you Google), I came across so many stories that felt like my own.  People sharing bits and pieces of their daily lives.  And with each one I read, I cried more.

One day I was reading a story about sensory processing disorder, and there was a link to Hartley’s Life With 3 Boys.  As I clicked around her site, I felt right at home.  Her life with her three boys was very similar to mine.  And she was looking for people to join her SPD Blogger Network.

So I did.  And this blog was born.

In these 55 weeks, so much has happened.  The SPD Blogger Network has now blossomed into its own site, and I’m proud to be a writer there and its newsletter editor.  I’m also lucky enough to be a contributing writer to Hopeful Parents and on Hartley’s site itself, and on our local autism resource center’s blog.  I helped a friend launch her Special Needs Sibling Saturday. I joined with friends to strongly (*ahem*) encourage Parents Magazine to include real life family stories for Autism Awareness month.

But the best part about this year has been meeting all the incredible members of this community.  When I started writing, I felt so alone.  Now I’m part of a family.  I can get up in the morning and know that at least 20 – 30 people have my back.  I have people I can turn to when things are tough, and friends who understand the importance of the small things.  The writers that I have met along the way aren’t just faceless people who post comments – they are my lifeline.  There are my Facebook friends now.  My Twitter buddies (no, I still can’t say “tweeps”).  Many of them I have now met in real life and many more I hope to meet very soon.

Because of them, I can breathe again.  I can get out of bed.  I can laugh and cry and not feel like I’m the only one.

Because of them, this blog has changed my life.  I would be lost without these incredible people.

Many of them are listed on the sidebar of my home page under “You’re the Inspiration”.  It may be a cheesy Chicago song, but it’s completely true.

I could use this space to list off my favorite posts, but every post is special to me in its own way.  So I’m taking a page here from my friend Spectrummy Mummy.
In the interest of awareness and paying it forward, choose a blog from my list.  I have learned so much from the people behind those titles.  Instead of leaving a comment here, click on any one of them and meet someone new.  Then share it with a friend.

I’ll end with this.  The one thing that has not changed over this past year has been the reason why I write.  I write for these incredible boys.  They are my world.  They are the ones that have taken me on this incredible journey.  We defy gravity together.

boys on the swing

My Three Sons

Here’s to the next 55 weeks together.

Something has changed within me
Something is not the same
I’m through with playing by the rules
Of someone else’s game
Too late for second-guessing
Too late to go back to sleep
It’s time to trust my instincts
Close my eyes: and leap!

It’s time to try
Defying gravity
I think I’ll try
Defying gravity
And you can’t pull me down!” – Defying Gravity from Wicked

I saw a different side of awareness the other day.

I was in the car with two friends, driving to an autism resource fair.  It was Saturday, April 2nd.  World Autism Awareness Day.   My friend in the driver’s seat has a child with Asperger’s.  My other friend’s son was diagnosed this past fall with PDD-NOS.  He’s three.

My friends were in the front seat talking about running and other such things.  I was enjoying sitting in the back seat alone, something I rarely get to do.

I tuned back into the conversation when I heard my friend in the passenger seat say “Did you know that the Boston Garden had blue lights on for autism?”

I looked up and caught the eye of my other friend in the rear view mirror.  She smiled at me.  She knew I knew.  Because I had written about it here.  And here.  And here too.

“Ask Alysia”, she said. “She has a blue shirt on today.”

My friend turned around to me.  “You know about this?”

“I do, ” I said.  I explained that April was Autism Awareness Month, and that as part of the “Light It Up Blue” campaign, landmarks all over the world were turning on blue lights.  I rattled off the list:  Fenway Park, the Prudential Building, the Empire State Building, the Sydney Opera House, the statue of Jesus in Brazil…

“They were even trying to get the White House to turn blue for the day.”  I said.

My friend’s eyes grew wide.  And they got teary.

All she could do was mouth the word “wow” to me.  And then she turned around and was quiet for a moment.

Right then I realized the importance of the “Light It Up Blue” campaign.  Yes, it’s just a symbol.  But for a mother who is still struggling with everything related to her son’s diagnosis, it meant much more than that.  It showed her that for one day the world stood with her.  And as she attempts to understand what is happening with her child and as she fights to get her son all the help and services he needs, she now knows that there are others fighting along side her.  All over the globe.

blue house

Light It Up Blue

Before this, I thought of the awareness campaign as a way to help people not connected to autism learn more about it.  My friend reminded me that it’s also about showing people within the community that they are not alone.  That there are others who understand and will accept her son as he is.  That we will be here to help her get through the difficult days.

It is for my friend that our yellow house is now blue.

Blue moon, you saw me standing alone
Without a dream in my heart, without a love of my own.

Blue moon, you knew just what I was there for
You heard me saying a prayer for someone I really could care for.” – Blue Moon lyrics

Today, for the start of Autism Awareness Month, I won’t be sharing our story.

Today, I’ll be turning the page over to some amazing friends of mine.  They aren’t bloggers or activists in the autism community.  They are moms.

Superhero Moms.  Moms who wear their capes twenty-four hours a day, seven days a week.  They are people I know in my real everyday “see you at the supermarket” life.

I asked them to share with me some words of wisdom.  “Can you tell me in a few sentences how your child’s diagnosis has changed you as a parent?  The good and/or the bad.”

Because if you want true awareness and understanding and acceptance for those of us living with autism, you have to listen to everyone.  Truly listen.

J. (mom of two boys, one with autism) :  for the worst…. it made me re-live those insecurities of high school and made me worry that my kid would be the one that other kids made fun of. But then it made me “grow up” and re-define “normal” and try to make sure that I think from HIS perspective not mine…getting him into the best environment for him and teaching myself how to verbally and non-verbally communicate the way that works best for him. I honestly struggle with my temper and my patience daily but my son and my friends that I have found through this experience are my rock that gives me strength everyday.
For the best…. I have a new found strength to share my story with other moms I meet in case it can help them help their kids. Autism isn’t easily defined like I used to think and there are so many families that may have that “feeling” that their kids need “something” but they just don’t know what or where to turn – I say trust your gut.  All the skills that I have learned to help my autistic son are just as affective on my “typical” son and I think it has made me a better communicator.

A. (mom of two boys, one with autism) : To say that our son’s diagnosis was a bit of a shock to us would be an understatement.  When his doctor started talking about looking into ABA, I thought she was talking about the American Bar Association at first, because that was all I had as a reference point.  Life sure has changed in almost 3 years.  I think I look at life with a completely different set of lenses now that I’ve started this journey with him.  He has taught me to slow down, and not to rush from one thing to the next just to get through it.  And, that I don’t have to go it alone – it’s okay to lean on others for help.  I think I have a better relationship with my husband and family because of my son, and I know for a fact I have girlfriends I wouldn’t have otherwise!  He has taught me that all accomplishments in life should be celebrated, regardless of size.  He has taught me empathy – it takes all kinds to make the world go round, and everybody is put here for a reason.  Everybody.  And, he has taught me to be a better parent to my older son , and show him what it truly means to be empathetic, understanding, and patient.

T. (mom of one boy with autism) : I would like to say that Autism has made me stronger.  Or more patient.  Or able to appreciate the little things in life.  The truth is, Autism has created a dark cloud over my family that follows us around day in and day out.  No matter what, it is there as a constant reminder of our son’s autism, and the worry never goes away.  The silver lining for me is that I have met an amazing group of friends who are always there to lend their support and brighten my day.  But what breaks my heart every day is wondering where the sliver lining is for my son, who must live with autism the rest of his life.  My hope is that someday he finds it.

J. (mom of a girl and a boy, daughter has autism) : An autism diagnosis to me was a period of many different feelings.  In a somewhat abbreviated version I suppose it started with: Tears, and a sinking stomach.  Questions of “why” and “how” ?  Nights spent on the internet reading and researching.  An eventual calming and acceptance of a new life challenge and remembering, things could be a lot worse. Then an overwhelming feeling of appreciation – for the help we found was available to help overcome these obstacles that lead to this diagnosis in the first place.  Then over time, less focus on that ‘word’ and more focus on the childhood and memories we want to give them, and watch unfold before us and they grow into their own little person. To present day…..very little daily focus on that autism diagnosis 2 years ago… to just immersing ourselves in the day to day lives we have as a family, and trying to do the best we know how to raise our children the right way while trying to keep meeting and hopefully beating any more challenges that may lie ahead of us.

A. (mom of a girl and a boy, son has autism) When my son was first diagnosed in 2007 we were shocked, just by the reality of it.  We knew something was different, but the reality of it knocked the wind out of us.  My husband, out of a sense of protecting our son and our family, did not speak of it to anyone outside of the family.  At work he kept his usual professional demeanor but inside he was concerned, worried about our son and what kind of life he would have, about our marriage because of the high divorce rate in parents of autistic children, and about our daughter, because of the focus our son would need.   It was easier for me not to speak of it because I work from home, with a flexible job.  For my husband, while this did not affect his everyday job, it affected his military standing.
When my husband was doing his outprocessing he told them he had an autistic son.  His supervisors were shocked –  he knew by their reaction and their words, that if had they known he would have been given a heads up that he forgot to do this or that, and would be given extra time.  That lesson showed both my husband and I that we needed to be open about our son, and not try and protect him because it could hurt us as a family.   Since then, we have been open and honest about our son, and his being different.
My husband is now in the Army Reserves, and during a recent ceremony our son had anxiety about being there with all the people and had frequent verbal outbursts before my daughter graciously took him out in the hall to look out the window at cars.  For once, my husband and I were not embarrassed because everyone in that room knew about our son and his uniqueness.  Having a son like ours has taught us about being open and honest about who we are as a family, and as individuals.

and finally, my friend Hope*.  Remember Hope?  She was the one who was there for me from the beginning.  The one who guided me and listened to me and showed me the path to understanding and acceptance.

Hope* (mom of four, one son with autism) : As a parent, I am more understanding and patient than I have ever been.  Not just of my own child, but of others around me.  Before the diagnosis, I would ask myself, “what am I doing wrong here?  Nothing is working.”  After the diagnosis, I found the tools I needed to deal with my child, which in turn, made things much better for my whole family.  I was doing a lot less yelling.  Everyone benefited from that.  I used to feel a lot of guilt around the amount of time and attention my child was getting from me.  I have 3 other children.  I finally decided to let that go.  Yes, he needs a little more than the others at times, but I think they know that.  We are all doing the best we can.  As a family, we have never really known any different than the way things are now.  Yes, we got a diagnosis, but things haven’t changed too much.  We try to be supportive of each other as best we can.  I find that my other children are a huge support for their brother.  They understand him and often go with the flow with him.  I don’t think I would change a thing about any of them or how our family is as a whole.

——————————————————————-

Awareness can and should happen every day.  But today, we’ll be just a little more aware.

Our house will be lit up with blue lights. Today, my boys and I will be wearing blue.

We wear blue for the 1 in 110 children affected by autism.

We wear blue for the 1 in 88 military children living with autism.

We wear blue for the hundreds of children who will be diagnosed this month.

We wear blue for my friends’ children.

We wear blue for my son.

And that is our story.

boys in blue

My Boys In Blue

All of these lines across my face
Tell you the story of who I am
So many stories of where I’ve been
And how I got to where I am
But these stories don’t mean anything
When you’ve got no one to tell them to
It’s true…I was made for you…

You see the smile that’s on my mouth
It’s hiding the words that don’t come out
And all of my friends who think that I’m blessed
They don’t know my head is a mess
No, they don’t know who I really am
And they don’t know what I’ve been through like you do
And I was made for you…” – The Story by Brandi Carlile

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