An letter to a friend who is having a second child evaluated for a diagnosis…

Dear Friend,

Come here and sit down.

You have a million things to do, I get that.  But please.  Have a seat.

I know you’re struggling.  I do.

I know making that call for an evaluation was hard.  Really really hard.  You can dismiss it but I know that it took everything you had to do it.

The first time you made that call for your older child it might not have been as tough.  Maybe your pediatrician suggested it or maybe the school did.  You didn’t know what questions you were going to be asked or how much paperwork you would need to fill out.  You didn’t know what the appointments were about or how many people would get involved.  All you knew then was that people were telling you something was different about your child.

This time, though, this time you know.  You know that it means hours of paperwork and interviews and testing for your little one.  You know what they will ask and how they will ask it, looking at every little milestone under a microscope and questioning every detail of your child’s development.

You think you can’t do this again.  You think you can’t hear the words again.  You think you can’t handle the hours and the logistics and the emotions.

But you can.

I know because I was there too.

It was about 18 months between diagnoses in our house.

It took me so long to pull the trigger on making the appointments for Lewis.  I would make the appointment and then cancel.  I would stare at the paperwork.  I spent so much time looking for “it” – the something that would be my sign that he was on the spectrum or not.  He was so different from Howie. Early intervention would come out three times before he was eligible for speech therapy.  And in the midst of it all we were working on Howie’s IEP and learning words like PECS and ABA and sensory diet.

The day after Lewis was diagnosed with PDD-NOS, I shared what I friend wrote to me:

“One on the spectrum is one. Two is two. I get that this is a watershed moment. But you know what to do now. You’re already doing it; it’s just a little more weight in your pack. You’ve got this. And you’ve got us.”

My friend, I say those words back to you.  One kid with a diagnosis is one.  Two is two.

You’ve got this.

I can say this now about 15 months after Lewis’ diagnosis.

The teacher meetings are the same.  Just times two.

The home therapy that was a part of our life with one is now a part of our life with two.

And our kids are thriving thanks to early intervention, great teachers and an incredible village of friends.

Lewis met almost every goal on his IEP this year.  And is meeting every goal in his home therapy.

My friend, I know you can do this.  I know what a great parent you are.

Things are different now.

That knowledge that made it so hard to make that phone call in the beginning is now your power.

You know that the journey isn’t so scary.

You know what to do.  You know what questions to ask.  You know who to call and where to turn and who has your back.

You know this road.

And you know you aren’t on it alone.

Never alone

Never alone

(I encourage you to read Welcome to the Club again if you haven’t already.  It hits home with one child. But it means even more with two.)
 
“Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home
Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be foundJust know you’re not alone
Cause I’m going to make this place your home” – Home by Phillip Phillips

Yes, I know that’s not a real song.

But I had no other way to title 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“.

But first…the back story.

**********

This winter, my friend and I took our sons to an open sensory gym in sponsored by the Autism Alliance of Metrowest.  We watched our boys run around and play and smile.  The equipment was familiar to the boys from their OT sessions at school so they knew just how to use it.  As a bonus, my friend and I got to actually talk to one another.  A few weeks later, we attended another sensory open gym, again sponsored by the Autism Alliance, this time at a private OT clinic.  Again, the boys were in heaven.  Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings.  And again, we got to talk.  Mostly about how we wished there was something like this open near us all year round.

I wrote about our experience there in my blog.  I talked about how welcoming it was.  How one child kept telling everyone it was a leap year and reciting the other years when a leap year had occurred.  How Howie made a new friend there who loved to spin around in the closed up swing as much as he did.  How happy our kids were.  And that no one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not.  It was pure acceptance and love for our kids.

Such a happy face!

My husband Tim read it, saw Howie’s happy face in the pictures, and casually said “You should open a place like that.”

I’m not sure he actually meant it. But I started to cry.  Because I knew we had to open a place like that.

The next night, I went out with a few friends for drinks.  All autism moms. I told them what Tim said.  They said we had to do it.

The next morning, I went for a walk with another friend.  She’s been my friend since our oldest boys were in preschool together. I told her to talk me out of it.  She talked me more into it.  And handed me a book on how to start a non-profit in Massachusetts.

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.

We met with a business consultant to organize our thoughts.  We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work.  We sent out a survey and wrote a business plan.  We asked my cousin to design our website and our incredible logo. We filed with the state as a nonprofit, with the attorney general’s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.

And so SenseAbility Gym, Incorporated was born.

**********

So what are we?  What are we trying to do? And why am I writing about this here?

SenseAbility Gym’s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.  This will be the first of its kind in the Metrowest area of Massachusetts.  We’re modeling our gym after an incredibly successful sensory gym in Brooklyn, NY.

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.

Through this blog, I’ve connected with special needs parents all over the country and the world.  The one common statement that most parents say is “I feel so alone.  My child is the only one that has these extra special needs. I have no one to turn to for support.”

My friend and I know how lucky we are to live where we do.  From the moment that we knew Howie needed extra help, we had people to help us.  Our pediatrician referred us to Early Intervention to get help for his sensory issues from an occupational therapist.  When he entered preschool, he was surrounded by a loving, caring, knowledge group of teachers and support staff who knew before we did what Howie needed.  And when he received his autism diagnosis, we were instantly supported by this team here in town to get him the services he needed.  And through that, he made friends.  And I made friends.  And without that…I don’t like to think about it.

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.

**********

I’m going to get numerical here for a moment.  We know that as many as one in six children have sensory processing issues. That is from the SPD Foundation. The CDC reports that 5.4 million children between the ages of 4-17 have been diagnosed at some point in their lives with ADHD in 2007 and that number is rising.  We know that 1 in 88 children – 1 in every 54 boys – are diagnosed as on the autism spectrum.

Taking a small seven mile radius around our town – the distance that people in our survey said they would travel for a service like ours – we know we have the potential of connecting with over 400 families who could use the gym.  We’re guessing that people will travel farther and the actual number will be even higher.

That is over four hundred families that could finally connect and say “Me too.”

**********

And this is where you come in.

I need your help.  As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open.  None of us are taking a salary.  All the money we raise goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.

Our gym will be located in Hopedale, MA.  There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, and tunnels, balancing equipment and a squeeze machine.  We’ll have one quiet “sensory” room with crash pads and low lights and calming activities.  And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children who need that to get their work done. Families will be able to purchase memberships to access open gym times with their children.  In addition, we plan to offer sensory based group activities, and have the gym available for private therapists to use with children and their parent.

We would like to have our grand opening in January 2013.  To do that, we need $38,000 to open our doors.  That includes purchase of all the equipment and furniture for the gym.

We are actively pursuing local and national grants to help get us closer to that number.

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.

Every dollar donated goes to the gym and those families.

It’s a balancing act

**********

Last night, we held our first fundraiser in our town.  The above is the speech I gave to the packed house that came for food, wine, chocolate, coffee and conversation.  The room was filled with family and friends and strangers who are now friends.  The most amazing part was it was not all people with special needs children.  It was our community. It was teachers, parents, friends, therapists, and business leaders.  They came because they wanted to support something that will benefit everyone.

We had a “sensory table” manned by my son Gerry and his friend.  She’s an amazing young lady who, like my son, understands how much swings and fidgets and weighted blankets and headphones help their siblings “feel better”.

We raised a lot of money last night.  We’re just under 40% of our goal.

But we still need you.

Clicking HERE takes you right to our PayPal donation page.  We are a 501(c)3 organization and your donation is tax-deductible to the extent permitted by law.  Every dollar goes towards get our doors open.

I want to be able to come here in January and post pictures of our grand opening.  I cannot wait to see the smiling faces on the kids that come through.

And their parents.

On behalf of my friend and every family that this will help, thank you for reading.

To read the news story about our fundraiser, click HERE.

To read more about our plans, click HERE.

To make our dream a reality, click HERE.

I was away for four days at a blogging conference in New York.

By the time it was over, I was ready to return home to my family.

But what I didn’t realize was how much I wasn’t ready to return to me.

What happens when you’ve had the oxygen mask on…and then you take it off?

I’m at The Oxygen Mask Project today writing about eggs, bacon, and trying to breathe freely.

Click HERE for “Home

So I am stepping WAY WAY WAY out of my comfort zone.

Next week, I’m heading to New York City for the annual BlogHer conference.

It’s a three day conference celebrating all things blogging.  I’m heading down a day early for the pre-conference HealthMinder day, which will have specific special needs panels.

If you don’t know me, you may not know why this is feeling so out of my league.  I’m the one much happier behind a computer screen than in a crowd.  At a party, I’m hanging by the food and drink table or leaning up against a wall in the corner.  I prefer to stay quiet, unnoticed.  I get anxious and nervous at Costco, so giant conferences make me edgy.

But I just had to go to this one.  And I have four reasons why.

Reason #1: In addition to writing here I’m also the managing editor at two other blogging sites.  For over a year now, I’ve been a part of the amazing team at the SPD Blogger Network, a group blog for parents of children with sensory processing disorder.  The site has a special place in my heart.  SPD was Howie’s first diagnosis.  Two years ago, when I started to write my own personal blog here, I connected with Hartley Steiner at her blog.  She encouraged my writing and put my blog on her site.  When she founded the SPDBN, she asked me to be there to help.  And there I’ve stayed.  We’ve created a loving, supportive and understanding community there on the blog site and on our Facebook page.  It’s the place I come to when I’m feeling particularly low or incredibly proud.  Every story is shared with honesty and love.  I understand my son better because of the incredible people who write for us every day.

The SPDBN relies on posts from parents.  Each day we post a new story.  I’m going to BlogHer to meet other parents who share a similar journey and I hope I can convince them to come write for us.

(side note: I’ll be the one with the cute Otto the Octopus.  See photo below.  Made especially for me to take to BlogHer by the incredibly talented SPDBN team Karla from The Itsy Bitsy Spider.  Find Otto, find me.)

She made those other cute guys for my boys. I may snag one of them to take with me as well…

The other site I help manage is The Oxygen Mask Project.  It was started with my friend Shannon as a way for us to reclaim ourselves, reminding us that we need to take care of ourselves if we’re going to take care of our kids.  It started small.  We started tweeting with the #yearoftheoxygenmask, sharing what we had done for ourselves that day.  For me, it was drinking my coffee when it was hot.  And showering.  While to many that sounds stupid, for me just doing that was a challenge.  I was so busy getting people out the door to school/therapy/baseball/piano/therapy that there was never anytime for me.  I hit bottom.  And now we have 880+ Facebook friends and 52 posts from writers from all over the world.  And every day we’re talking about how we’re important too.

There will be a special panel at HealthMinder day called Overcoming Burnout: Replenishing Your Reserves.  I’m going to BlogHer because this is exactly what we’ve been talking about for six months.

Reason #2: Two of my favorite people are being honored at the special Voice of the Year.  I can’t wait to hear my friend Varda as a reader for the “Heart” nominated posts.  I expect there to be very few dry eyes in the house.

And I’m so thrilled that my friend Stimey was nominated as a Voice of the Year for her incredible post Not Even Wrong.  This post changed my life.  That’s not hyperbole.  I read it at a time when we were having tremendous struggles with Howie and school.  Her post about her son Jack changed EVERYTHING about how I viewed Howie’s school life, and made me step back and look at how we needed to teach him.  Because my perspective changed, I was better able to communicate with his team at school and we all turned things around.  I am forever grateful to Stimey for what she wrote.  I’m going to BlogHer to tell her in person.  Again.

Reason #3 goes with Reason #2: I’m going to be with friends.  Including friends I’ve never met.

And, yes, I know that probably only makes sense to the blogging/social media world.

The best example of this is how I met my BlogHer roommate, Kristin.

Last summer, my kids’ school opening was delayed a week due to Hurricane Irene. I was completely stuck for ideas on how to entertain them when they were supposed to be in their classrooms.  I whined about this on my blog’s Facebook page, and this angel named Kristin asked if I wanted to join her and her boys at their swim club.  We had never met, but had a mutual Facebook friend and had become friends that way.  I sent her a message saying simply YES!  We chatted via email and text, and there we were at her swim club for the whole day.  Our boys played and swam – sometimes together, sometimes doing their own thing.  And because we were both autism moms…well the rest is history.

We’ve only seen each other once since that day at the pool.  But when I decided to go to BlogHer, I asked Kristin if she’d go too.  In addition to her amazing blog, she’s also written for the SPDBN and The Oxygen Mask Project.  So now we’re taking the bus together down to the big city, and I’m hoping she’ll help me get out of the corner.

But this is what blogging has done for me.  In addition to the incredible “in real life” friends I had, I’ve connected with a whole group of insanely smart, funny, snarky special needs parents who have taught me so much just through their words.  I’ve been lucky enough to meet some of them before and now count them as my closest friends.

I can’t wait to meet this friend, and this friend, and this friend, and this friend, and this friend.  I’ve been reading their work for so long and now I get to put a face with the words.

And I’m hoping a few other friends will come join me for a drink or two.  Or three..

I’m going to BlogHer to connect with the people who have taught me so much.

Reason #4: I need to get away.

I’m not going to lie.  This has been a long long summer.  I need a little break. In addition to the usual summer things, I’ve started a new project and it’s been a lot of work to get off the ground.  I’m stressed.  And I’m taking it out on the kids.

I need a break to sleep.  And shower.  And pee alone.

I have to get some time to regroup.  To feel better.  To breathe.  I’m going to BlogHer to find myself again.

I’m terrified of the three days away from my family.  I’ve never been gone this long.  But I know Tim and the boys will be fine.  We have an incredible support system around us here who will help if (when?) things get sticky.  I will have a social story ready for the boys so they are prepared too.

And when I come back I will be ready to take it all on again.

I’m stepping out of my comfort zone and going to BlogHer’12.  See you there.

Start spreading the news,
I’m leaving today.
I want to be a part of it –
New York, New York.” – New York, New York by Frank Sinatra

It’s midnight.  I am lying in bed, talking to Tim.  It’s the only time we can talk alone now that the kids are home and awake way later than they should be.

“I’m worried about Howie,” he says. “It’s sometimes really hard to see him around so- called typical kids.”

He’s referring to a few incidents, but mostly to an afternoon before school ended.  Tim went in to volunteer in Howie’s class to help with a science project.  Howie had a major meltdown over an experiment and left the classroom to calm down.  Tim didn’t see him again until almost the end of the day.

“I know,” I said quietly.

“The older he gets, the more his ‘quirks’ are going to stand out.  I just want him to have friends.”

I nod silently in the dark.

“You saw that video of that bus monitor in New York, right?  Those are the kinds of kids that will target him.  Those are the kids who could hurt him.”

He’s not wrong, of course.  And I know that.

“I know,” I said. “But we’ll do what we can to keep him safe.  We’ll make sure he stays on the mini-bus as long as he can.  And we’ll have to teach him to tell us everything.  And then teach him again. And again.  And just hope it will be okay. But I know.  It scares me too.”

**********

On June 30th, my friend shared the link about the New York bus monitor’s story and posted this on her amazing Facebook page “We Care About Someone With Autism“:

I’m VERY sorry that this happened, and I’m happy to hear that the students who did this are being punished. But this whole thing REALLY bothers me. I mean, we hear about bullying every day….yet this person had $650,000 donated to her in order to take a VACATION?!?!?!? What about the thousands of Autistic children who get bullied in school or on the bus every day? Where’s their $$ to take a trip to Disney World? Understand — I REALLY am sorry that Karen Klein had to go through this — NO ONE should have that experience. But the public response (on that score) is TOTALLY misdirected.

I completely agree.  It is absolutely awful what Ms. Klein endured.  The children involved needed to be punished and I believe their suspension was appropriate and necessary.  No one – NO ONE – should go through the kind of abuse that she did.  But what happens when it’s kid versus kid?  Is there the same outrage? What about my kid who doesn’t understand that someone is verbally abusing him? Or what happens when my kid is the one who fights back and gets in trouble because he’s the one with the behavior plan?

What do I do?  As parents…what do we do?

**********

I’m in Dunkin’ Donuts, having an early morning meeting with a friend.  I take a sip of my coffee and look up at the TV screen.  CNN is on.  They are playing a video.  The sound is off, but the tag line at the bottom says “Video of 13-year-old autistic girl being bullied”.  I look away.  I search for it later and find this:

All the girls in this video are 13.  According to comments on the “Bully” movie Facebook page and a story from thAutcast.com, the video was taken by the girls perpetrating the attack.  The autistic girl’s mom put the video on YouTube to show the world what happened to her daughter, but then took it down when the girls involved received hate mail and death threats.  This copy of the video was left on YouTube.

This video just makes me cry. How do I keep this from happening to my child?

**********

It’s July 4th.  We’re on our way back from Target, getting some supplies for a holiday backyard party.  A CD of some of The Beatles Greatest Hits is playing.

I hear singing from the middle row of the mini-van.

I look in my rear view mirror.  Howie is singing:

Nothing you can make that can’t be made.
No one you can save that can’t be saved.
Nothing you can do but you can learn how to be you in time.
It’s easy.”

And then he gets louder:

All you need is love.
All you need is love.
All you need is love, love.
Love is all you need.”

He catches my eye – just for a second – in the mirror.  He looks away but smiles.  I smile back.

All you need is love (all together, now!)
All you need is love. (everybody!)
All you need is love, love.
Love is all you need (love is all you need)

I will tell him to be proud of who he is.

I must teach him to stand up for himself.

I will show him that love is more powerful than hate.

He already believes that love is all you need. 

I have to believe it’s enough.

It’s the first night of the last day of school.

Howie’s laying in my bed in the dark, watching a show.  I’m working on the computer.

“Mom? What age will I go back to Miss P’s class?”

Miss P is – was – his kindergarten teacher.

“You won’t, sweetie.” I replied without turning around. “She only teaches kindergarten and you won’t be in kindergarten again.”

I go back to working.

Five minutes later, I hear quiet crying.

Sobbing.

My kid does not sob. He cries – loud, shrieking, angry cries. But not like this.

I turn around.  Howie is crying into his pillow.

“What is it?  What is wrong?”

“I forgot to move my chair to first grade.  I can’t be in first grade without my chair.”  More body shaking sobs.

I crawl into bed next to him.  He’s hiding his face in the blankets.

“Your chair?  Oh…your special chair.  The one with the therabands and the velcro?”

About two months ago, the amazing school OT was revamping Howie’s sensory diet for his classroom.  She put therabands around the bottom of his chair so he could kick his legs while doing his work and not hit anyone.  She put velcro on the sides of his chair and on his desk so he could rub his hands on it for extra sensory input.  That chair made all the difference for him these last weeks of school.  He knew that chair helped him.

And in his mind, the chair was staying put in kindergarten when he moved to a new classroom.

“I promise you we’ll get your chair and make sure it’s in your classroom for first grade.  I will even make sure it’s there for your summer camp too.  Okay?  Don’t worry.  It will be there for you.”

But then…he went on.

Because it wasn’t just about the chair.

“Why do I have to go to another classroom with a new teacher?  I will really miss Miss P. Will Mrs. S be with me in first grade?”

Mrs. S was one of his aides this year.  She really understood him and was with him today on his last day.

“And my friends!  What about my friends?  I will never see them again.”

I assured him that he would.  That we could have playdates over the summer to make sure he saw them.

“But it won’t be every Monday, Tuesday, Wednesday, Thursday and Friday.”

Can I just pause for a moment? 

In the midst of all this anxiety…as my son is shaking with tears…I see progress. 

It’s the double edged sword of the special needs mom. 

With this painthe first glimmer all year of connection to peers.  The first time ever expressing and understanding that loss of connection.

I pulled him in close and told him that we’d make sure he’d see his friends as much as possible.

The crying and the questions continued.

“How come none of my friends are with me in my new class?”

I had no good answer for that one, not one that was easily shared.  Howie is going into a 1st/2nd grade combined class so there were only so many spots.  The other parents would have had to first choose the mixed-level class to start, and then gender and all sorts of other things factor into placement.  Plus, he had a hard time with the dynamic of his kindergarten class so having new kids around him made sense.  Or so I thought.

“What if I can’t remember all the new kids’ names?”

At this point, I had sent Tim a quick text to come upstairs.  I was about to start sobbing myself.

“Mom.  I am scared to go to first grade.”

Pausing again to mark the moment.  We have hit so many emotions in the past but never this one.  Expressed so appropriately and so…painfully. 

We talked through the fear.  I told him that every year I was afraid to go to school but once I walked into the classroom I was fine.

Tim suggested that we get a class list and meet some of the other kids over the summer so they weren’t new faces in August.

Howie sat up straight.  He turned his hand into a talking “puppet” and said, in the most age appropriate mocking voice:

“Hi.  I’m Howie.  I’m afraid of first grade.”

And he slumped back into the pillow and starting sobbing again.

Progress and pain.

Somehow, Tim got him laughing a few minutes later and he finally calmed down.  He smashed his body into mine and asked if I could hug him.

“I love you, sweetie.” I whispered as I do every night.

Every night I get the same “I love you too” scripted response back.

Tonight I got “The same back to you.”

I’m not going to lie.  I am wracked with guilt and joy tonight.  The guilt, well, that’s obvious.  All year long all I saw were the struggles.  It was all anyone else saw too.  He never mentioned the connections he was making with his teachers or friends, even when asked.  I figured many of the “friendships” written about in his communication log were contrived social situations so he could practice his skills.  I had asked about playdates but he never mentioned any particular friend.  What I never realized was that he was connected to them all – any one could have been a potential good friend. For the past few weeks I have been so focused on just ending this school year and starting fresh.  I couldn’t stand to read the communication log one more time.  I couldn’t bear one more meeting, one more data sheet of tantrums, one more phone call from the school.  All about me.  Not once did I stop to think that my little guy would want or need something different.

The joy?  The complete and total appropriateness of his reaction.  The clarity of his expression of his feelings.  His need to talk about it.  The fact that it was about his chair but it wasn’t about the chair.  It was the worry about missing the things – and people – that helped him the most. 

I sent an email tonight to his team at school requesting that his chair be moved into a special room so it would be there for his summer program, and asking if it was possible for him to help move his chair into his new classroom before school started again.

The subject line of the email was “Just One More Thing…”

It’s always just one more thing.

Progress and Pain.

 

The internet has been abuzz with “The Mommy Wars” – the notion that mothers are in competition with each other over who has the “better” way of parenting.

But I’m involved in a different kind of “Mommy War”.  It’s not about me comparing myself to the mom down the street or across the country.

I’m at The Oxygen Mask Project today, talking about a war that rages inside my own head.

Not the battle of Am I Mom Enough.

But the battle of Am I A Good Enough Mother?

And I have some special friends to thank over there too.

Click HERE for “What Makes You Beautiful”

And if you haven’t yet, read some of the amazing posts over there.  Truly incredible moms and dads sharing what makes them stronger today.  Next post could be from you.

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

Why do I have a blue light on my house this month?

I could light it up blue for the women in my support group, who have given me the gifts of laughter and strength.

I could light it up blue for the people I have met since my son’s autism diagnosis who are always there no matter what time zone they are in now.

I could light it up blue for my friends who have fought so hard for the appropriate educational placement for their child.

I could light it up blue for the children diagnosed this year and the thousands more to be diagnosed in the years to come.

I could light it up blue for the families who drive by my house so they know they aren’t alone.

But the most important reason I light it up blue?

I light it up blue for my family.

So I can show them that there are other families just like ours.

So they know that the stigma does not exist in our house.

So my boys know that what makes them different makes them special.

So their brother sees that we’re part of something global.

So he feels less alone.

So WE feel less alone.

On our first World Autism Awareness Day, we looked like this:

April 2, 2010

Then we looked like this:

boys in blue

April 2, 2011

And today we look like this:

April 2, 2012

I can see the progress in these pictures.  I can see the hard work and the tears and the love.

When we shine a blue light on our house, we are shining the light on those beautiful faces.

Light Up The World

I light it up blue for them.

Lay it all down
Got something to say
Lay it all down
Throw your doubt away
Do or die now
Step on to the plate
Blow the door wide open like up up and away

Let’s light up the world tonight
You gotta give up the bark and bite
I know that we got the love, alright
Come on and light it up

Light it up tonight” – Light Up The World from Glee (original song)

(part three of the #yearoftheoxygenmask.  It’s a trilogy. I think.)

January 17th, 2012.  10pm

I’m sitting on my bed, waiting for the hair color to set it.

I’m two hours away from turning 40.

I send a message to some friends.  “Quick!  Best thing about being 40. Go.  Before I cry.”

And like the amazing friends that they are, they all jumped in with reasons why their forties have been the best.

And interestingly…their answers were all the same.

Forty was the year that they started really knowing who they were.  They looked in the mirror and saw their true self.  The pretenses were gone.  The need to please everyone was gone.

Forty was the year that they started really focusing on themselves.

One friend said: “You know who you are, what matters and who your friends are.”

And another friend put it, it was the beginning of “me”.

Not in a selfish way, but in a “I’m a person too” kind of way.

I wrote back: “Oh goodness…this is making me happy and teary at the same time. That’s good right? Could also be the hair dye fumes…”

**********

January 18, 2012 10:40am

My Facebook status: “To my incredible amazing friends who got me over the “I’m 40″ angst…I thank you. So grateful for all the birthday wishes today. Got my birthday hugs from the boys, and hot coffee and a great present from Tim. Forty is pretty good so far…

**********

January 18, 2012 11pm

I am saying good-bye to my very good friends as they walk out the door.  They are five of the people who know me the best, and they came by for a spur of the moment cheesecake, coffee and chocolate covered strawberry party.  They arrived at 8:30, and we sat at my kitchen table and just talked. And laughed.  A little about autism, a lot about ourselves and our lives.

As I closed the door behind them, I realized this was the first time I had friends over in the evening in almost ten years.  My kids had never slept alone long enough or slept soundly enough to ever have anyone here.

I told Tim a while back that my thirties were about the kids, and my forties were going to be about me.  And him.  Us.

He reminded me that my forties will still be about the kids, Howie in particular.  I know that.  And being their mom is the greatest thing that ever happened to me.

But it won’t be just about them.  It can’t be.

Forty.  I can do this.  This is me.

**********

This is why my friend and I were compelled to start The Oxygen Mask Project.

Once upon a time, a group of special needs moms started talking about their lives.

They talked about how devoted they are to their children and to making sure that their kids’ needs are met.

But somewhere along the way, they had forgotten to take care of themselves.

The Oxygen Mask Project has one mission: to give parents a place to feel supported when they take a moment to catch their breath.  Guilt free.

**********

January 19, 2012 11:30pm

I’m still awake.  The house is finally quiet.  This has been a tough day for Howie in a string of tough days.  He’s stopped eating, only drinking his yogurt smoothies.  His aggressions have increased.  His behavior is difficult.  I can tell he feels out of control of his body. I think he’s fighting off something.  Or maybe it’s the change in weather.  I don’t know what it is and he can’t tell me.

I want to help him but I am exhausted.

And then I remember the logo from The Oxygen Mask Project:

Tomorrow morning, I’m doing something I’ve never done before.  My friend is coming over with her son to watch Lewis.  I am going out.  Not for an IEP meeting, not for a doctor’s appointment.

For a hot stone massage.

A totally guilty 40th birthday pleasure.

The in-her-thirties Alysia would have never said yes to my friend’s offer to watch Lewis.  I would have been wracked with guilt about it.  My pride would have told me to say no.

Now that I’m forty?

I am taking care of myself so I can take care of my kids.  I need a hour just for me so I can give the other 23 hours of the day to my boys and to Tim.

My friend knows that I will pay it forward.

Because that’s how we take care of each other.

This is what we do.

**********

We hope you join us over at The Oxygen Mask Project if you haven’t already.  Visit our Facebook page and cheer on other moms and dads as they take a moment for themselves.  And check out our blog for all the great posts from parents sharing what they are doing to take a moment just for them.

Let’s take that first deep breath together.

Sleep delays my life (get up, get up)
Where does time go? (get up, get up, get up)
I don’t know
Sleep, sleep, sleepy head (get up, get up, get up)
Wake it up…up (get up, get up)
You’ve got all your life (way up ahead) (get up, get up, get up)” – Get Up by REM

Follow

Get every new post delivered to your Inbox.

Join 1,892 other followers