Yes, once again, I know that’s  not a real song.

A year ago, I wrote The Ballad of SenseAbility Gym.  The post was about a vision.  A dream.  An idea of creating a space where all children and their families are welcomed and accepted.

A year ago, I wrote this:

It’s an original title for a brand new project of mine.

It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.

My very dear friend and I are opening a parent-led sensory gym.  As a non-profit. For kids just like mine.

We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids

The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.   Not one person told us it was a bad idea.  In fact, they all said we had to do this.

And this:

We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.

  • Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.
  • Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.
  • Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.
  • Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.

We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.  We see the gym as a place where moms and dads can interact with parents just like them.

As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”

We see it as an another piece of the support team helping families know they are not alone.

Then I wrote this:

I need you to tell people about us.  Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.  Maybe it’s your own family.  Maybe you work for a company that is generous with community giving.  Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.

I need you – my friends and family – to help make this gym a reality.  Not just for my kids or my friend’s kids.

But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.

For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.

For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.

And you came through.  We had support come in from all over the country. People not only wanting to help us financially, but with advice.  People who knew people in our area.  People who wanted to open their own space in their own towns.

Thanks to you, we raised the money we needed to open the doors of SenseAbility Gym in February of this year.


That vision – that dream – for a community where everyone is accepted and welcomed came true.  We may have created the physical space, but the over 200 children and families that we have met since then have made the vision a reality.

I could write and write about this amazing place, but the stories aren’t really mine to tell.  They are theirs:

This place has given me a purpose.  It has connected me with the most incredible business partner and friend.  It has created a space where my kids are welcomed and accepted and known by name.

The families who come in have become my second family.

Thank you to every one of you who has supported us in this journey. Our community is so grateful.


senseability-webNoLogo (2)

I’m not very good at asking for money, but I have to.  SenseAbility Gym relies on private and corporate donations and grants to stay open.  No one at the gym takes a salary for working there.  We keep our membership fees low so every family can afford to come.

To do that, we need your support.  Every dollar goes right back into the gym – towards new equipment purchases, our rent and insurance, and programming costs for our free special needs yoga classes, social skills/friendship groups and parent meetings.

Click HERE to donate via PayPal or click HERE to visit our donation page at


A friend said to me the other day “You spend an awful lot of time on Facebook and Twitter.  What are you doing on there?”

This is my response:

It was simple at first.  I got an email asking for some advice.  I replied.

And then I got this back:

I am really completely floundering in all this…the bottom line is that I am really just trying to figure this all out on my own. Every time I reach out to our current “team” from Early Education they simply tell me what a wonderful job I’m already doing. Well, that’s nice to hear, but it’s not enough. I KNOW I’m not doing enough. I need someone to give me some tools, some ideas, something that gives us a direction.

We haven’t really established a doctor who understands the issues and is working with us. We have pretty much only taken him when he is ill. We now have a medical card for him, but don’t know how to begin choosing a doctor…I don’t want to have to go through trying a bunch to find the right one. But I know I need to bite the bullet and find someone who can work with us.

I’m rambling now. Sorry. Bottom line is, thanks for replying, and thanks for listening. Sometimes I feel that I should apologize for taking up people’s time because I know what a precious resource that is.

She needed help.

She was on her own.

I know this feeling all too well.

I wrote back:

Keep rambling. Yes, we all have things going on. But that’s why we’re here to support each other.
I know that floundering feeling. Can I help by asking some friends is they know good docs in your area that have worked with kids on the spectrum? I have some good connections.
I know that insurance reform is happening where you live, so hopefully you’ll have some relief there and access to more home help. It sounds like that’s what you need the most right now. Let’s see how we can get you that .
Keep talking to me and others. Please. And please remember to try to take care of you too. Just a few moments for you, with some peace and quiet.
Let me know if it’s okay to ask around. Anonymously of course.

So I did.

I posted it on my blog Facebook page.  I sent out a tweet.  I wrote an e-mail or two (or three or four).

And then it happened.

looking for autism folks in lincoln, nebraska and wichita, kansas for a couple of mamas in need of local connections / guidance. anyone?

And 19 comments followed.  All parents in those areas looking to connect and offer help.

Then I tweeted this:

 @trydefyinggrav Friend looking 4pediatrician in Wichita KS area that works well w kiddos w #autism Family has no help

And got several RTs and people making calls and connections.
Next came this:

@xtremeparnthood  Calling all #autism peeps: Anyone live in the Lincoln, NE or Wichita, KS area? Looking to help some moms make some connections!

Which turned into this:

@will2455  @xtremeparnthood saw this RT…I’m in Wichita, KS…my 2.5 year old son is on the spectrum. I’d be more than happy to help…

@xtremeparnthood  @will2455 Thank you! I’ll let @Diaryofamom know you are in Wichita, KS and would like to help!

@diaryofamom @xtremeparnthood@will2455 TY guys!!! @trydefyinggrav made the connections today while I was at work 😉 #lovethiscommunity

In the span of just a few hours, this mom who previously had no help or support now had a doctor to call, a support center to connect with, and the name of a person working on insurance reform in her state to help guide her.

This is what it’s all about.

This brave mother reached out to someone she had never met.  Instead of turning inward and losing hope, she spoke up and said “I can’t do this alone.”

And this incredible community came to her side.

People she had never met.  People I have never met.

When it matters – when a family is in crisis – we joined together. Under the banner of “We Get It”.


That is the power of social media.

Without the connections I’ve made online, I’d still be lost.  Floundering.

I thought there was no one like me.  I thought there wasn’t any child like my child.

Then I started reading blogs and Facebook pages.  I started writing our story.

I joined Twitter.

I know what I know about parenting a special needs child because of the people I have met online.  These friends made me the advocate and parent that I am today.

They gave me hope when I had none.  A virtual hand to hold and shoulder to cry on when I had no one.  At any time, day or night. They gave me the strength to reach out IRL (in real life).

You want to know why I’m on Facebook and Twitter so much?  Because I never feel alone.


I asked my now new friend if I could share her story here.  She agreed and wrote:

When you write your post, I would suggest that you also really encourage people to REACH OUT in those moments when they feel adrift and alone. No matter how silly it feels, no matter what you worry people may think of you…We are all parents of amazing kids who want to create a world in which they can thrive, and we would do anything to help one another reach that shared goal!

On behalf of my friend, I am asking you to get connected.  Whether you are just starting on this journey or have been on this road for a while, reach out.  Join Facebook groups.  Get on Twitter.  Make new friends.

Visit websites like:

My Autism Team: “The social network for parents of children with autism.  Find parents like you.”

Squag: “A curated social space for kids with autism (and other learning differences) to build ideas about themselves. Our goal is to facilitate the opportunity for organic relationships; driven by kids, supported by parents. What could be better?”

National Parent Technical Assistance Center: “A major goal of the ALLIANCE National PTAC is to build the capacity of Parent Centers in order to improve results for children with disabilities ages 0 -26 in rural, urban and suburban areas and from underrepresented and underserved populations.”

You are not alone.  We may not be there in your house but we are out here and we are just like you.

Together, we’ll have hope.

A HUGE thank you to Diary of a Mom and Adventures in Extreme Parenthood and the many who responded, retweeted, and emailed.  What you do every day to helps me feel less alone.

It’s the singer not the song,
That makes the music move along,
I want you to join together with the band,
This is the biggest band you’ll find,
It’s as deep as it is wide,
Come on and join together with the band,
Hey hey hey hey hey hey, well everybody come on.

Come on and join, join together with the band,
We need you to join together, everybody come on,
Hey hey hey, join together with the band.” – Join Together by The Who

Somehow, we remembered.  It must be a Christmas miracle.

Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.

I blurted out, “I wish we could have our own Santa somewhere so your kids could get their pictures with him without worry.”

We were quiet for a moment.  Then a friend said “My sister-in-law has a Santa suit.  We could do it.”

“Someone remember this for next year.” I said.

And somehow…we did.


Five of us started talking, and the plan began to come together in mid-November.  Instead of our monthly support group meeting, we’d have a holiday party for our families instead.  We’d hold it at our local community house for free, have pizza and drinks, and bring in some crafts and toys for the kids to play with.

Low key.  Joyous and simple, my friend said.

And of course, Santa.

I recruited my friend’s husband to play the role of Jolly Saint Nick.  He’s amazing with kids and has known Howie since he was a toddler.  He’s not a special needs dad, but he’s a very special dad.  If anyone could play Santa for our kids, it would be him.

The RSVPs from our support group friends flooded in.  We were expecting 60 people.  Thirty-five kids.

I got a call that morning from one of the moms in our group.  She was coming with her crew – her husband, her 11 year old daughter, and her 7 year old son, who has autism. She thanked us a hundred times for this.  Her son had never seen Santa – it’s always been too hard to get him out to see him at the mall – and her daughter still believes and wants to see him too.

She said we’ve made “Christmas exciting for her family again.”

I almost burst into tears on the phone.


The afternoon of the party came and I was a nervous wreck.  I only had to bring the Hot Wheels cars, the crafts, and make sure Santa was there on time.  For some reason, I felt like so much was riding on this.  We were promising our friends so much – the ability to play and eat and talk to Santa on their own terms.  Could we pull it off?

We could.


Let me tell you something.  Our kids…they are something special.

They walked into that room and somehow they knew it was a safe space.

A place to just “be”.

They sat on the floor and played with cars.  They built with blocks and made snowman crafts.  They played with what they wanted to play with. Ate when and what they wanted to eat.

My friends' kids playing with Hot Wheels Trio Blocks (photo used with their permission)

There were no meltdowns.  No “interfering behaviors”.  No “non-compliance”.

They were themselves.

I made the big announcement that Santa was in the building at 6pm.  You could feel the kids’ excitement as he walked into the room.

We had a special spot for Santa to sit in the back of the room for photos.  Tim set up his camera equipment to get that special shot.  Santa gave the kids “high-fives” and we had a seat next to him for the kids to sit in.  Not on him.

Because…we know.

Santa took his place and the kids made their way over to him in their own way.  Some rushed over and got in line.  Some moseyed their way over, checking out the scene.  Some hung back, going over if they felt like it.

Santa on their own terms.

No one was more excited to see Santa than my own Howie.  My little Jewish boy jumped up and down when Santa walked in.  He pulled me down and whispered in my ear: “Is Santa real or fake?”

“What do you think?” I said, holding my breath.  I didn’t know if he recognized my friend in the suit.

“I think he’s real.” he whispered back.  Good enough for me.

"I would like a green hot wheels car!"

"Is there one in Santa's bag?"

Hurray! It's a Christmas miracle!

We had kids get their pictures taken with Santa who had never been able to be in the same room with him before.

As my friend said: “Community house? Free.  Pizzas? $10 each.  Our kids’ smiles? Priceless.”

(my friend's son, photo used with her permission)

Ringing Santa's bell so wishes come true (my friend's son, photo used with her permission)

First great photo with Santa (my friend's son, photo used with her permission)

First time with Santa (my friend's son, photo used with her permission)

and my personal favorite photo:

My son, giving Santa a high five. Minutes after he told Santa "I celebrate Hanukkah."

I wish I had the words to describe the joy in that room that night.  Let’s just say that the kids were all full of awesome.

That night, a few of us went out for drinks.  One of my friends said she’s never seen her daughter that happy.

“She could just…be.”


There was no stress for our kids to be something else.  They were surrounded by acceptance and understanding and pure unconditional love.

The way the holidays are supposed to be.


I have Santa signed on for next year already.  This Jewish girl saw the magic of Christmas and I will never ever forget it.

The moon is right
The spirit’s up
We’re here tonight
And that’s enough

Simply having a wonderful Christmas time
Simply having a wonderful Christmas time ” – Wonderful Christmas Time by Paul McCartney

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

“Blood is blood”

This was my Grandpa Leo’s version of “Blood is thicker than water”.  He would say it every now and again, jokingly, when he would talk about his blended family.  Even though I was related to him by marriage (he was my mother’s step-father), he always treated us as if we were blood relatives”.

When Howie was diagnosed with PDD-NOS last year, I sent an e-mail to three of my cousins.  All three have children who are just a year younger than Howie, and we visit with them quite often.  I sent them this:

As you may know, last week we took Howie to a developmental/behavioral pediatrician for his evaluation, and today we had our follow up/diagnosis meeting.  Basically it’s what we’ve suspected all along – she diagnosed Howie with autism spectrum disorder calling it PDD/NOS.  Howie’s weaknesses show up in his social processing skills, mainly in terms of how he relates to others, his inability to read social cues, etc.  She said that with intense therapies and immediate intervention, we have a good chance of helping him incorporate coping strategies into his everyday life so they become part of his daily routine.
While hearing the diagnosis hasn’t been all that easy for Tim or me, it’s been validating for us in a way because we’ve always known there was something going on with Howie, and now we can get him (and us) the help we need.
I’m filling you all in on this for a number of reasons, obviously the primary one being that you’re his family and I know you love him and want to know how he’s doing.  I’m also letting you all know that because of all the hard work we have ahead of us, especially in the coming year, we’re going to have to restructure things at home to make life work better for Howie and us all.  Kids like Howie crave structure, routine, and predictability, and Tim and I have to respect that and help him learn to function appropriately in different social settings.  What it might mean is for at least the immediate future, changes to our daily routine will be difficult for us.  I’m not saying that we won’t be visiting people or wanting visitors to come here, but within the confines of those changes in routine we’ll need to factor in some familiar routines for Howie and stick with them.  I’m hoping that you’ll all understand and help work with us to make that successful.
So that’s it in a nutshell.  We know things could be worse, and we know that all of these things make Howie who he is, and we can’t and won’t expect him to be someone he isn’t.  While we aren’t looking forward to all the hard work we have to do, we are looking forward to seeing the positive changes in our family.  Thanks for helping us get there.

I sent them this e-mail to give them the “out” – to let them know that if they didn’t want to spend time with us or have their kids around Howie, I would understand.  It would make me sad, but I would understand.

To their credit, none of them stayed away.  At all.  And as I got brave enough to tell the rest of my extended family, their response for the most part has been the same.  They are still here.

I know I’m lucky.  And I know that this isn’t typical.

I know that for a lot of families struggling with special needs, their immediate and extended families aren’t the most understanding or supportive people out there.  And for them, they’ve had to create new families of friends and caregivers who can be there when needed.

Which leads me to this.  Two of my friends are about to go through some major changes in their lives.  One friend’s husband is being deployed in two weeks.  For a year.  Another friend is having major surgery and will be off her feet for quite some time.  Both friends have boys on the spectrum.

These are incredibly strong women who are about to change their whole parenting mindset.  One will become both father and mother, picking up the activities that used to fall to her husband.  The other will need to give up much of her motherly responsibilities in order to focus on her recovery and her health.

At our last support group meeting, we asked them how we could all help.   What can we do to make things easier?

These were questions that neither one could answer right now.  They didn’t know specifics about what they would need.  They both just wanted to know that we all would be there if and when they did need us.

And as new members of their families, we will.

Friends are there to plan playdates, organize carpools, and bring over wine and chocolate.  Family is there to do laundry, walk the dog, pick up prescriptions and be on call in the middle of the night for emergencies.  Friends are there if you ask them to be, family is here when you need them to be.

It may not be “blood is blood”, as my Grandpa said.  But sometimes, the family you create can be just as good or even better than the one created for you.

Grandpa Leo

My Grandpa Leo

Everyday(everday) should be(should be) a family reunion
We should speak
From the heart
And let love be the solution
Let us forgive (forgive)
Put the past out of the way(put the past out of the way)
No time to wait (no time to wait)
The time has come to give love everyday” – Everyday (Family Reunion) by Chaka Khan, Gerald Levert, Yolanda Adams and Carl Thomas

“What is your escape?  What is the one thing that you do that makes you feel like you?”

The question loomed over me all month long.  It was the discussion topic for our support group meeting.  In order to learn a little bit more about each other as people (and not just mothers of kids with special needs) we decided we’d share our “escapes”.  The hope was that it would get us all talking about the positives in our lives, and maybe discover that we had some escapes in common.

So all month I thought about it.  What was my escape?

(side note: I got permission from the women who were there to share this.  That support group is my safe haven to share things, and we expect that whatever we talk about there, stays in the room.  It’s our Vegas, baby.  And I’ll protect that confidentiality to the end.)

As we went around the room, the clear winner in the escape category was working, followed by exercising.

Then it was my turn.  What was my escape?

I had none.

“You blog?”, my friend suggested.

Frankly, this was going to be my original response.  It is what I do when I have time to myself and I love writing. It is something that is all mine.  But as I listened to the other women there, I realized it wasn’t really an escape.  It doesn’t take me away from everything else going on here, in fact in many ways it amplifies it.  I’m not “just me” when I’m writing.  I’m still my kids’ mom.

Blogging is sometimes more like free therapy for me.  So all the words and feelings don’t explode out of my head and land on the kids or my husband.

For my friends, work and exercising made them feel like they were accomplishing something.  Setting goals and achieving them.  An expert in something, the “go-to” person when things went wrong.  A time when their brains were switched from “mom” mode.  I remember that.  I used to run an office, manage payroll, plan the schedules for over 20 teachers and still teach at night myself.  Now I’m the mom who drops her kids off at school in her pajamas and forgets to pack lunches and snacks.

I left that night on a search for my escape.

I tried to think what it could be.  Maybe it was running?  This summer I ran in preparation for my first 5K race.  It did get me out of the house alone – just me and my iPod.  But it still didn’t feel like an escape to me. In order for me to actually get out to run, many planets had to align.  My husband had to be home to be with the kids.  I needed to have had a decent night sleep.  I couldn’t go when meltdowns were happening around me.  My running time depended on someone else’s schedule.

In my head, an escape had to be something that happened on MY time.  Not when I felt like everyone else’s needs were taken care of.

I went through it all in my head.  I don’t like to cook.  I’m not crafty.  I can’t sew.  Watching Martha Stewart for more than 5 minutes makes me itchy.

I have tossed around the idea of doing some part time work from home, but the last two times I had that thought I ended up pregnant again.  So you can imagine I’m a bit gun shy at the idea.

Before kids, we did all sorts of things to escape.  Tim and I would spend the weekend camping at the marina and go out on the boat all day.  We’d sit at Barnes & Noble and have coffee and read the Sunday paper.  We’d sit on the couch and do crossword puzzles together.

Even after Gerry was born I still found some time to escape.  He was in daycare three mornings a week, and I would go to Jazzercise or take a walk with the dog, or even grocery shop alone.  Howie went to daycare two mornings a week the summer before Lewis was born, and I used that time to get ready for the new baby.  It was my quiet time to plan as I pleased.

I need my escape to be when everyone else is engaged in their own thing as well.

With that, I realized that my escape time will be coming.  Next September, Lewis will be in preschool two mornings a week, and the other boys will be in school full time.  I’ll have five hours each week that will be mine again.

So I have 10 months to find my escape.  Maybe it will be something I’ve done in the past.  Maybe it will be something new.  I’m open to suggestions.  It’s ok that right now I don’t have that escape.  I know it will come.  I’m looking forward to discovering what that one thing will be for me, something that helps me flip the switch to “Alysia” mode.

In the meantime, I know that in my own house I am the expert.  I am that “go-to” person when things go wrong.  I’m the one setting the goals and it’s my job to help my family reach them.  And it’s ok if, for now, I leave the switch in “mom” mode.

Especially since I can do that in my pajamas.

“I said, ‘I never knew’…
That you liked Pina Coladas, and getting caught in the rain.
And the feel of the ocean, and the taste of champagne.
If you like making love at midnight, in the dunes of the cape.
You’re the love that I’ve looked for, come with me, and escape.” – Escape (The Pina Colada Song) by Rupert Holmes

On my soapbox for one moment.

I read a lot of blogs. I mean A LOT. Probably too many (I think my husband would say scratch the “probably”). But I do it for a reason. In my constant struggle to become a better parent – maybe a more understanding parent – I search out others who are experiencing what I am and try to learn from their successes and lessons learned.

I read all these blogs because the mainstream parenting magazines just don’t fit my family anymore. I can’t tell you how many times I’ve picked one of them up with the teaser “Tips to help your picky eater!” and just put it down laughing. I need the “tips for helping your kid who will only eat crunchy orange food off of a green plate and has to drink his smoothie through a green straw!” Not surprisingly, that’s not the headline in next month’s Parents magazine.

However, it is the headline in many of the blogs I read. In addition to the amazing live and in person support group I have, these writers have become my guide through my everyday struggles. These mothers and fathers live what I live, and through our blogs and comments we share advice, ideas, and encourage each other to press on another day. Because it’s about our kids. We know that we aren’t medical experts, but we have been through enough to help others try not to reinvent the wheel.

But I’ve noticed lately a weird trend in some of the blog comments I’ve been reading. Things are starting to get nasty. Personal. People attacking the character and background of other bloggers. I’m not going to link to any of the personal attacks here because I don’t want to give them any more attention than they’ve already received. But it’s mean and unnecessary, and in many times there just to incite the other readers. Is that really what we’re all about?

Now I haven’t been writing for very long, so maybe this has been happening for a while and I’m just naive. I know that the autism community is divided on many issues – from causes to treatments to policy issues – and has been for a very long time. There’s nothing wrong with that. But to call someone a bad person or a bad parent because of what he or she believes or does for their child? Seems out of character for a community that wants their kids to be treated with respect and dignity in the outside world.

My father was the ultimate politician and I learned a lot from watching him. He would sit down with someone who was completely opposed to his position on a particular issue, listen to them carefully and thoughtfully, and then quietly explain his perspective and point of view. It was never about him or about pushing his agenda. He made it about the issue (usually about kids) and helped turn the discussion into a civil exchange of ideas. He would change the debate. More often than not, the person walked away with a new way of looking at the problem. And every time they walked away with a favorable impression of my dad.

Maybe it’s time to reshape our debate …again.

I’m joining with the amazing editors at the Autism Blogs Directory and am taking the next step to help create a new community. They challenged their readers to pick a blog they have never seen, read it, and leave a respectful and thoughtful comment. There are so many wonderful writers out there sharing their stories daily and I know I have a lot to learn from everyone.

So here’s my pick. It’s Laura from “Life in the House that Asperger Built“. I picked it because she’s a mom like me with children on the spectrum. But she’s also on the spectrum herself, as is her husband. I’m getting a unique perspective from her that I haven’t read anywhere yet, and I’m so grateful for that. I look forward to learning so much from her.

I’m hoping that others take up the same challenge. On the right side of my home page I have a long list of my favorite special needs blogs – choose any of them and you’ll find a fantastic writer behind that link. Have a child with sensory processing disorder? Click on ANY of my friends who are part of the SPD blogger network. A child on the spectrum? Click on ANY of my friends under “Websites I Like”.

I know that there are people who read this who don’t have kids with special needs (thank you friends and family who are here because I guilted you into signing up!) I hope you take me up on this challenge too. Are you a runner? Check out my friend Charlotte‘s blog. Interested in parenting and social justice issues? Read my friend Gaetane‘s blog. Or go to Google and type in your favorite hobby, click on blogs, and choose the first one that comes up.

Take a moment to read their latest post and leave a comment if you can. It’s the best way to rebuild our communities and support each other. It’s the best way we can tell each other we’re not alone. It’s the best way to start again.

I’m getting off my soapbox to look Spectrummy Mummy’s latest post. Her youngest was just evaluated by early intervention and I want to know how it went. I want to tell her that I’m there for her no matter what, because on Friday I’ll be in the same boat again. And I need her there with me then.

I think you’ve made your point now.
You’ve even gone a bit too far to get the message home.
Before it gets too frightening,
We ought to call a vote,
So could we start again please?
” – Could We Start Again, Please from Jesus Christ Superstar

I am beyond honored to have my essay about my support group posted on today’s Thinking Person’s Guide to Autism site.  I have nothing but respect and admiration for the team that runs this site, and I have learned so much from them.  As a community we need to support each other – in person and online.  I hope that I’m helping to do my small part in that.

One note to my friends in my support group, I want you all to know how much this group has meant to me personally.  You have changed my life and my outlook for the future.  And for that, I thank you.

Here’s the post:

Lean On Me

I’ve been thinking a lot lately about the show “The Golden Girls”.

Stay with me for a moment…

I was recently reading one of my favorite blogs written by my new friend Partly Sunny. I call her my friend even though I’ve never met her and have only “conversed” with her through our blogs and by e-mail. She has a perspective on all things autism that is different from mine, and recently she asked me if she was upsetting me with some of her comments. My response was of course not, that I respected her opinions and point of view, and I found her comments to be refreshing and important to hear.

All this started me thinking about my new community of parents with kids on the spectrum and parents of kids with sensory processing disorder (and in so many cases, these parents are one and the same). We listen to each others’ stories, comment on them, and then tell our own and get our own comments. I’ve been lucky enough to meet an amazing group of parents out there in cyberspace and in person. I enjoy hearing their stories and others do me the favor of listening to mine.

And for some reason, all of my new friends reminded me of the show “The Golden Girls”.

Still with me?

“The Golden Girls” was a show back in the mid to late 1980’s about four older women living in Miami. Each woman had a distinct personality and role on the show. I’ll out myself as a faithful watcher those Saturday nights through high school (now you know how exciting my life was back then). There was Dorothy, played by Bea Arthur, the voice of reason in the group and clearly the one in charge. Her mother, Sophia, was played by Estelle Getty, and was the wise-cracking sarcastic one, yet lovable in her own way. There was Blanche, the sassy southern belle man-chaser with a heart of gold played by Rue McClanahan. And my favorite, played by Betty White, was Rose. She was naive and took everything literally. She was the sweetheart of the group and the one they protected the most from the outside world.

So on Saturday nights for seven years (and for decades in syndication), these women entertained America. On the surface, they had very little in common and disagreed on a lot. Yet they had a formed a bond stronger than those disagreements, and at the end of every episode there was some sort of group hug.

That’s what this amazing community feels like to me.

I read a lot of blogs and websites and have the good fortune to have people reading mine, and have made many friends along the way. We have our voices of reason like Dorothy who guide us in the right direction. There are the wise-crackers like Sophia who are always there with a joke or comment to make us laugh. There are the sassy Blanches with the heart of gold. And of course, our sweet Roses who will always say the nicest things to make us feel better, even when the situation is dire and sad. We disagree on a lot – the causes of autism, what treatment methods to use, and whether or not we should look for a cure. In many ways we have almost nothing in common. To extrapolate on a saying “if you’ve met one parent of an autistic child, you’ve met ONE parent of an autistic child”. Yet remarkably we have one strong bond: the desire to be there for each other in whatever way we can. Because we “get it”. Because we’ve been there. And because we need people to be there for us.

Just like the end of every “Golden Girls” episode, each night before I go to bed I feel like I’m getting a big group hug from everyone out there. Every comment that I read, either on my blog or on others, reminds me that people care. Every text or e-mail I get from my friends shows me that I’m not alone. Each day my faith in humanity is restored by the Dorothys, Sophias, Blanches and Roses out there in cyberspace and in my daily life.

Thank you all for being my friends.

Thank you for being a friend
Traveled down the road and back again
Your heart is true your a pal and a confidant.

And if you through a party
Invited everyone you ever knew
You would see the biggest gift would be from me
And the card attached would say thank you for being a friend.
” – Thank you for Being a Friend by Andrew Gold (Golden Girls Version)

I just registered to walk for our local “Walk Now for Autism Speaks“. I’ve known about the walk for a while, but just today got up the guts to actually register for the event.

The guts, you say? It’s a one mile walk around a race track. What guts does that take?

Well for me, a lot. When I first read about the event, I decided we weren’t going to participate. I had a million reasons as usual. I would have to schelp the whole family into Boston early in the morning. It’s the week before my first 5K and I didn’t want another thing to have to think about. I hate asking people for money. There would be a lot of people there, and I’d have to manage my family with the crowds. I hate porta-potties.

Of course, as usual, these weren’t the real reasons for my hesitation. I just wasn’t sure if I was ready yet to do it.

When my son was first diagnosed, we started getting a lot of information from our local autism resource center. One of the events they were promoting was a race/walk to raise money to support that center. Feeling bombarded and overwhelmed by everything, my husband and I decided we weren’t going to participate. The fact that it was happening on a weekend that we were going to be away helped that decision, but truthfully we couldn’t have done it even if we were around. It wasn’t that we were in denial, although there were still a few doctors questioning if our son had been misdiagnosed (our pediatrician thought he had ADD, our GI thought maybe it was bad reflux or an allergy). I think we just weren’t ready to announce to the world that our son was autistic. Or at least it seemed like that’s what we would have been saying if we participated in that fundraiser.

Fast forward to now, several months later, and it’s clear our son wasn’t misdiagnosed. Along the way our family has slowly come to terms with what his diagnosis means for him and for us all. Hiding in the shadows of our pride didn’t help anyone, especially our son. While still attempting to maintain our privacy, we’ve opened up more to family and friends about what his autism means and we’ve met some amazing people along the way. I’ve helped start a support group to reach out to other families in our town so we all feel less alone.

I write this blog, for goodness sakes. Can’t get more public than that.

But still the hesitation came when I saw the e-mail about the Autism Speaks walk. Why was it that I was still so uncomfortable about signing up?

It’s taken me until today to figure it out. As “out there” as I thought I was, through our group and through this blog, it’s still been within my comfort zone, surrounded by people I know or anonymous people in cyberspace. By participating in the walk, by asking people for money, by actually walking that day with my kids, I was no longer going to be a just a quiet voice in the corner. I would be out there with the potential to be photographed, interviewed, and questioned about my son. It brought me back to that first day when I walked into the gymnastics class just for kids on the spectrum. I spent that whole time wondering if we were in the right place until the end when I realized that we belonged there.

And it hit me. We belonged at the walk just like we belonged at the gymnastics class.

The Autism Speaks walk is the perfect place for us to feel like we’re among friends. It’s a one mile walk followed by activities and entertainment geared towards families like mine. No one there will care if we get there late because we couldn’t get out of the house on time, or have a meltdown on the track, or a tantrum leaving. I’m guessing we won’t be the only ones. This is also an organization that has given our family so much – it was the first place I went for information after my son’s diagnosis, and it was the place that published my essay about that gymnastics class. That essay is now included in their 100-day kit, which is sent out to families all over the world to help them understand what to do after receiving their child’s autism spectrum disorder diagnosis.

Now that I’ve registered for the walk I’m hoping that a few friends will join me too. If they don’t, I understand completely. If someone had asked me last week if I wanted to walk with them, I might have said no. We all need to get to that place in our own time. I don’t want anyone to feel like it’s something they have to do. For me this is something I finally WANT to do.

If you’re looking for me there, I’ll be the one trying to blend in with the crowd.

Walk on through the wind,
Walk on through the rain,
Tho’ your dreams be tossed and blown.Walk on, walk on
With hope in your heart
And you’ll never walk alone,
You’ll never walk alone.
” – You’ll Never Walk Alone by Rodgers and Hammerstein