Note: As I wrote in part one, I asked Howie if I could share this story (and parts one and three) here.  I told him that I had a blog and that I liked to write about things that happen in our lives on it.  His response?  “Sure.  You can share this with the blogosphere.”  Well, okay then.

Second note:  While this is part two, the story actually happened first – before part one.  But it took me a long time to get the words together for this part of the story.  I am hoping the order makes sense some day.

photo(20)

It was a Sunday morning a few weeks ago.  Howie and I were headed out.  It’s a work day for me and it’s our Sunday tradition that he comes with me.

He stopped short in the garage and said “Hey!  That’s not right!”

I turned to see what he was looking at.  It was his snow shovel.  On it there’s a picture of a snowman saying “Brrr!” and he’s surrounded by four drawings of snowflakes.

“What do you mean?” I asked.

“All the snowflakes on that shovel are exactly the same.  That’s not right.  Every snowflake is different.”

“That’s true,” I said.  I looked over at the shovel.  “I would have never seen that.”

“I notice stuff like that.” he said.

I opened up the car door and helped him buckle his seat belt.  He’s getting faster at doing it himself, but when he’s thinking of other things the motor planning involved with buckling just doesn’t come as easily.

“Yes, you do notice stuff like that,” I said. “You always have.  You have a brain that sees things that others don’t.”

“I know,” he said.  And he named other things he notices.  Details on letters with different fonts.  Things that are just slightly out of place.

I pulled out of the driveway while he was talking.

“Does that make me a mutant?” he asked.

“What? No!”

I looked at his face in the rear view mirror as he looked a little crestfallen. Ah, like the X-Men…we’re in superhero mode again.

“You aren’t the only one in the world with that kind of brain.  But most people don’t.”

Smiles from the back seat.

I realized that this was the time.

I have spent the days since that moment we got Howie’s autism diagnosis in December 2009 wondering how I would talk to Howie about his autism.  I rehearsed it in my head many times.  Bought books.  Read blog posts.  Wanted to make sure I did it “right”.

We stopped at a light.

“So…” I said.  “That ability is a gift.”

“It is?”

“Yes.  You know what I mean by ‘gift’, right?  Not like a birthday party gift but more like a talent.  Something special you have.”

“I know! What is it? What’s it called?”

“It’s called autism.”

“So I have autism?”

“Yes.”

“Hmmmm.”

I decided to push it a little bit more.

“Hey, you know who else has a gift for seeing stuff like that?”

“Who?” he asked.

“Your friend Brooke.”

“Brooke has autism?”

AND THE BIGGEST SMILE FILLED UP MY REAR VIEW MIRROR.

I left the words hanging there for a moment as I turn into the parking lot for the sensory gym.

“Mom?”

“Yes?”

“Can I have the iPad?”

“Of course.  Once we’re inside.”

And we were done.

**********

A totally easy conversation about something not so easy.

I relayed the conversation to my friend Jess later on that morning, partly because it was through her words and guidance that I was even able to have that conversation that way, but also to thank her and Brooke for giving me the permission to share with Howie.

She texted me back with “You know what makes these conversations so hard? US.”

How true is that?

I wrote “It was just so natural as a progression from him seeing something no one else would ever notice…I figured it was a good moment to call it and not a challenging moment.”

That is where Howie and I left it that morning.   His autism is his gift.  He knows that his brain works differently than others.  He knows that it means he can smell things more intensely than others, that he can create things in his head and make them come to life, that he can interpret the world in a way that is uniquely his.

And he’s knows he’s not alone.  Knowing that he has a friend whose brain works a little differently is so important.  We’ve talked some more about other kids we know who are autistic and each time a smile fills the room.

At some point I know we’ll have to talk about the challenges that autism brings.  Because that is as important as knowing the strengths. Part of understanding his differences is knowing that the sensory issues, the difficult time sitting still, the frustration over school projects and social interactions, and the perseverations – these are not because he’s not smart or incapable.   Actually just the opposite.  Knowing that his brain works differently will help him understand that his aides in school are there not as a crutch or punishment but as a tool for support, just like his sensory tool box.  He needs to know that it’s okay to ask to leave the room when he can’t concentrate, and that it’s okay to ask for help not because he can’t do it but because he needs to frame it in a way that works for his unique brain.

But we aren’t at that point yet.  That conversation will come – it may be next week or next month or next year.  What I know now is that I can’t plan it.  It has to fit the time and place with no script or plan.

Unique to him.  Just like the snowflake that he is.

my favorite holiday present ever. Howie's teacher made a snow globe with his picture inside.  As Howie says "It shows my 'pizzazz'".

my favorite holiday present ever. Howie’s teacher made a snow globe with his picture inside. As Howie says “It shows my ‘pizzazz'”.

Whether life’s disabilities
Left you outcast, bullied or teased
Rejoice and love yourself today
‘Cause baby, you were born this way

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

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

For my son, throwing up is the ultimate horror show of sensory overload.  He’ll avoid it at all costs…actually preferring to swallow it than throw it up.” – A conversation I had with a friend when my son was sick

Dear American Academy of Pediatrics-

I’d like to take this opportunity to respond to your position paper on Sensory Processing Disorder and its inclusion in the new DSM-V (Diagnostic and Statistical Manual of Mental Disorders).

I meant to write to you that night when the paper came out.  I read all the media coverage.  The articles with headlines like “Doubt Cast on Usefulness of ‘Sensory’ Therapies for Autism“, with quotes like “there isn’t much evidence that such therapies actually work” and “some other issue could underlie their reactions to stimuli, such as a behavioral issue.”

I read all this and I was angry.  How dare you? I thought.  We’ve been living with sensory processing disorder for over six years now.  Do you? How do you know?

I took the time to read your actual position paper.  I cooled off a little.  I needed some time to think before I could share how I felt.

But I’m not going to respond as a writer with interviews and counterpoints.  My friend Brenda did an amazing job of that with her post at The Thinking Person’s Guide to Autism.  I hope you read it.

Instead, I’m simply going to respond as a parent.

I’ll admit it.  I had no idea what sensory processing disorder was until about 4 years ago.  All I knew was there was something going on in my son’s body that I couldn’t figure out.  Back then, we called it “not comfortable in his own skin.”  He couldn’t sleep without touching me and would wake up every 45 minutes.  He wouldn’t eat anything with chunks.  Smells and noises threw him for a loop.  He wouldn’t want to be touched, yet he would smash his body into me and everything around him.  He couldn’t handle the world around him.

We called our pediatrician.  She told us to call early intervention.  We filled out the Dunn Sensory Profile.

It was the first time I cried as a parent over a form.  The questions kicked me in the gut.  It was clear that my son had “definite differences” in many areas.

We qualified for early intervention for occupational therapy for his sensory issues.  Once a week, the OT came to visit.  She would have him carry heavy balls around and knock down towers.  She put him in a body sock and sang songs to him.  She created obstacle courses and did joint compressions.  She “brushed” him.

I’ll admit it again.  At first I thought…what the heck is this?  How could this help?

But it did.  My son was calmer after his sessions with his OT.  Some therapies worked better than others.  We did what worked and stopped when it didn’t.

In preschool, he had a very set routine with the school OT for a in-school sensory diet that consisted of before school “tune-ups”, and many sensory breaks as needed throughout the day which included walks, jumps on the trampoline, and swinging in the therapy swing. We also had a routine at home. The school sensory diet piece got dropped at the beginning of his kindergarten year – or perhaps more precisely, the need for this sensory diet was not as understood at the kindergarten level – and we had quite a downward spiral in behavior in the classroom and at home. Now, with the guidance of the school OT, my son has a much better prescribed sensory diet in the classroom in conjunction with his behavior plan, and he’s doing much better.

Now, I’ll tell you, American Academy of Pediatrics, in reading the actual paper, there are some interesting pieces in there. One piece is is making pediatricians more aware of sensory issues, and encouraging parents to delve deeper into the route causes of the sensory overload. For many parents, like me, I noticed the sensory stuff WAY before any of the signs of autism spectrum disorder. I believe that any conversation about this between parents and doctors is a positive step, and you’re asking pediatricians to have frequent follow up appointments with parents who are doing sensory integration therapies. Stemming from this, I am also happy to see the idea of telling parents that it’s okay if one therapy isn’t working and to stop it and perhaps try something else.

But…

I know plenty of parents desperate for help and recognition of these sensory assaults who get dismissed by their doctors, or perhaps given an alternative diagnosis that doesn’t really fit their kid but allows them access to services. I wish you had told doctors to refer parents to a qualified occupational therapist for help with the sensory therapies, so that parents aren’t out there trying things on their own with no guidance. The two professions should be working together for the good of the individual child.

I have three boys, different as morning, noon and night.  My oldest definitely has sensory issues.  Hates certain clothes, incredibly picky eater, smells throw him over the edge, can’t stand noisy places. But no diagnosis.  My youngest?  Has the PDD-NOS diagnosis, but his sensory issues are almost zero.  No different from mine.

But my middle guy?  The one I’ve been writing about here?  The one with both the SPD and PDD-NOS diagnosis?

I firmly believe that my son’s sensory “fight or flight” reactions are the driving force behind all that he does. His inability to process his world is his biggest issue. Social skills issues, his hyper-focus, his sleep troubles – all sensory. I can say is that the therapies devised by our OT have worked for my son in helping him organize his body and thoughts.

I’d like you, the American Academy of Pediatrics, to spend just one day in my house.  Then perhaps, spend an evening with another child who has SPD.  And then, talk with an adult with sensory sensitivities. Just like every autistic person is different, sensory issues present themselves differently in every person as well.

I can tell you that it is real.  For my son, it is his reality twenty-four hours a day, seven days a week.

As his parent, it is my reality too.

Perhaps, AAP, we should shift our mindset away from phrases like “treatments that work” and focused more on “therapies that help”.

I can NOT behavior therapy away his SPD.

My child and thousands like him need access to the sensory tools that will help him cope.

I think that SPD should be a stand alone diagnosis.

Put yourself in his shoes for just one day.  Please.

Let’s keep talking about this.  I have a feeling that soon you’ll change your mind.

How can you resist this face?

Sincerely,

Alysia

Your mind is made up you won’t even try
You didn’t even cry this time
You say that we could never see eye to eye
And one of us just must be blind

We have our differences
We’re still the same
See what we want to see
But you take a second look
And maybe things wouldn’t seem the same
If you could see what you mean to me” – Put Yourself In My Shoes by Clint Black

From the SPD Foundation: “Your voice is needed NOW to say that SPD does exist and that many are suffering. Research on SPD already exists, more than enough for inclusion as “a new category that needs additional research”!

Act NOW!  The final deadline to show informed support for the inclusion of SPD in the revised Diagnostic and Statistical Manual (DSM-5) is June 15, 2012.”

Click HERE for more information

“He allowed the examiner to engage in his play and followed along but did not expand upon the plot.  Eye contact was generally reduced in quality and quantity.  Nonverbal communication was also generally reduced or limited…He required prompting and support to engage with the toys presented to him (blocks, Legos).  He built a wall with the Legos, but preferred to play with a car by moving it back and forth on the desk.  He did put his head on the desk and closely visually inspect the car as he moved it back and forth in front of him…on the basis of his behavior during the ADOS assessment, (Howie) met the behavioral criteria for a diagnosis of autism spectrum disorder.” – Howie’s diagnosis report, December 2009

These are not the droids you’re looking for.” - Obi Wan Kenobi, Star Wars, May 1977

Hang on, those quotes will make sense in a moment.

It feels like a lifetime ago but I remember it so clearly.  A gray December day, sitting in the small office of the developmental pediatrician.  I was in the back of the room while the doctor was administering the ADOS (Autism Diagnostic Observation Schedule) to Howie.  Every once in a while she’d quietly tell me what she was doing, but her eyes stayed on my son the whole time.  The doctor tried to engage him in the construction activity, but he just took the pieces he wanted and did it his way.  He had almost zero interest in the Birthday Party activity.  And the tea party?  Forget it.  He was more interested in the cars in the parking lot.

I had no idea what she was looking for or why these activities were so important.  The words “joint attention” and “pretend play” weren’t part of my vocabulary at all.  I just thought my kid liked to line up cars and drive them.  I didn’t know these were red flags.

“See how he’s watching the wheels on the car as it drives back and forth?”

I saw it.  The report was clear.  I got it.

Fast forward to August 2011.

I’m sitting in a different, yet very familiar looking, office watching the doctor administer the ADOS to Lewis.  We’re there because his speech is still delayed and his therapist thought there might be something more going on.  I watch him engage with the doctor as they play with an airplane.  He mimics the doctor’s play skills, but doesn’t take them further.

They take out a birthday cake and try to have a party.  He plays along but refuses to blow out the pretend candles.

In my head I’m screaming, urging him on. We do this at home! Lewis, it’s just like the Lego Duplo cake we make!

They hand him a doll and ask him to feed it.  He just holds it.  They ask him to set a table.  He stares blankly.

I KNOW what they are looking for.

At our follow up appointment for Lewis, the doctor mentions all these things as “red flags” for autism.  I argue with her a little.  I tell her that he’s the youngest of three boys.  We have no dolls in our house and he’s never seen anyone feed a baby.  How would he know what to do?

And the table setting?  Have you seen our house?  It’s a miracle if we all sit down to eat together.

And let’s not forget that a little knowledge can be a dangerous thing.  I have been hypervigilant about the pretend play with Lewis.  Hell, I even wrote about it.

But I didn’t push it with the doctor.  There was enough other “stuff” that qualified him for the PDD-NOS diagnosis.

In my head, though, I never let it go.  This felt like more of an indictment on my parenting skills and not his actual play skills.

Fast forward to May 2012

I’m sitting in our TV room answering some e-mails.  Howie and Lewis are scurrying around in the other room, building something with blocks. The conversation is flowing between them.  They are giggling.

“Let’s get a red block and put it here!”, yells Lewis

“Perfect,” says Howie. “Now, we just need a blanket.”

A few minutes pass.

“Mom!  Come see what we made!”

I walk into the other room to this:

shhh…baby Stormtrooper is sleeping…

They took their “baby Stormtrooper” and made him a crib.  Lewis grabbed the dish towel from the kitchen for a blanket.

“Shhh…we fed him breakfast and now he’s sleeping.”

Take that, ADOS.

Yes, this is the result of much therapy and attention to play skills and conversation.  Both of them have these goals not only at school but in their home therapy as well.

But it struck me that maybe it wasn’t so much a lack of pretend play skills but rather a lack of the “right” pretend play skills.

Or perhaps: “These aren’t the pretend play skills you’re looking for.”

My kids will always beat to their own drummer.  You could hand them a doll today and they may or may not know what to do with it.  They still like to look at the wheels of cars and will tell you the name of a car just based on its logo.  They will build elaborate structures with their Legos but prefer to drive their Hot Wheels through it rather than pretend that people live in it.

But they are playing.  Together.

I’ll take that over a fake birthday cake any day.

Those seem like the “right” skills to me.

Rock-a-bye baby, in the treetop
When the wind blows, the cradle will rock
When the bough breaks, the cradle will fall
And down will come baby, cradle and all.” – Rock-A-Bye Baby nursery rhyme (and a pretty scary one if I say so myself)

Thursday, April 12th

Tim and I are sitting in the office of the boys’ general pediatrician.  We’ve just handed her the Vanderbilt Parent Assessment for ADHD.  After a phone consultation the day before with Howie’s developmental pediatrician, I downloaded the form from the internet and brought in to the doctor.

The doctor looks at Tim. “Did you fill this out together? Do you agree with the answers on this sheet?”

Yes, Tim answers.

“Wow.  Well, I don’t even have to officially score it.  His numbers are so high.  We’re clearly looking at adding an ADHD diagnosis here.”

I knew that already.  In addition to finding the assessment on the internet, I also found the score sheet.  Because I’m that mom now.

“So,” the doctor said, “let’s talk about what’s next.  You already have all the behavioral supports in place.  It’s time to talk medication.”

Again, we knew that already.  We had done our research. The conversation was not if medication, but which one.

I was grateful to have Lewis sitting on my lap.  I could focus on him and fight back the tears.

My friend asks me later that day through e-mail if I’m relieved to have this new diagnosis.  She’s referring back to when Howie was diagnosed with autism back in December 2009, when I said how relieved I was to finally have an understanding of what was going on with my son.  “It’s not like that this time.” I said.  “It’s more like : okay, now what.”

Acceptance starts at home.

Friday, April 13th

I am supposed to meet a friend at dinner time for a political meet and greet.  Lewis and I had spent an hour that morning running around, trying to find a place to fill Howie’s prescription.  I sat at the kitchen table, fumbling with the medicine bottle.

I write my friend the following e-mail:

So…I can’t do it.  I am a mess.  I can’t go tonight. Getting the meds proved to be more of a trigger than I thought.

I know this is the right thing.  I know this is the next path.  Rationally I have no second thoughts.  But I am terrified, anxious, worried…and sad.  Really really sad.

I can’t get my game face on tonight knowing what tomorrow brings.  Or might not bring.  I kinda just want to cuddle up with Howie tonight as he thrashes around in his skin before everything changes.

So I’m sorry.  I hope you get it.  Well, I know you’ll get it.  I really really wanted to go.  Really really really.

Love, Alysia

Acceptance starts at home.

Saturday, April 14th – Saturday April 28th

I see the change right away.  With one dose.  He’s calmer.  Clearer.  Words and thoughts and feelings are coming out that never did before.  His first week on the medication was our spring break week.  We are able to problem solve and work things through.  His clothing anxieties are gone. I don’t have to sit in the room when he played with his brothers to facilitate play. I wasn’t sure if I was just seeing something because I wanted to see it, but others saw it too. When Howie returned to school, he had his best week in months.  School work was fun again.  He’s interacting with peers, taking turns, and playing games.  He has two amazing soccer practices.

Acceptance begins at home.

Sunday, April 29th

Things begin to unravel.

Anxieties are back with a vengeance.

Meltdowns are powerful.

I pull him kicking, screaming and crying off the soccer field.

Acceptance is getting harder to swallow.

Tuesday, May 1st

His aggressions return at school.

His beloved bus driver quit and he refuses to get on the bus to go home, instead screaming and flopping to the floor in the principal’s office.  I’m called to get him.

He tears at his clothes for two hours before finally falling asleep.

He tells me he wishes he wasn’t human.

I can’t accept that.

Wednesday, May 2nd

I keep him home for a personal day.

We make the world’s best marble track and have cupcakes for lunch.

He has his best home therapy session in weeks and spends the evening at a friend’s house making homemade pasta.

I confirm our appointment with his pediatrician for the next day.

Acceptance is falling apart.

Thursday, May 3rd

I tell our pediatrician about school.  She examines him and tries to talk to him about how he’s feeling.

He stares at the red airplane with the number 6 that hangs from the ceiling.

The doctor looks worried.  She turns to me and says “This isn’t Howie.”

I nod.

We agree to take Howie off the medication.

We pack up our stuff and she looks right at me. “We’ll figure this out.  It will be okay.  You’re doing fine.”

I’m trying to accept that.

Tonight

I went downstairs to get a snack.

I slid to the floor and cried.

I cried because I believe that my son needs some medication in addition to all the behavioral supports he has.  But I don’t know how to find the “right” one.

I cried because for two weeks I felt like my kid was back.  The one that was all full of awesome when preschool ended last year.  The one who laughed and ran and played and loved school and everything about it.  That is my kid.

My kid is not the kid who hits his teachers and screams at his teammates on the soccer field or erupts in a fit of rage when someone takes his toy.

I refuse to accept that.

We will figure this out.

Together.

We have to.

But I do believe

That not everything is gonna be the way
You think it ought to be
It seems like every time I try to make it right
It all comes down on me

Please say honestly you won’t give up on me
And I shall believe
And I shall believe” – I Shall Believe by Sheryl Crow

Autism Positivity Flash Blog

An e-mail from the amazing writer at Outrunning The Storm:

A few weeks back, I got in one of my Google search term stats “I wish I didn’t have Asperger’s”.  It’s not the first time I’ve gotten something similar sadly. But, this time I haven’t been able to stop thinking about it. I don’t know for sure which post of mine they found but I do know it wasn’t what I want to say to this person. I spent some time talking with some blog friends of mine…and we came up with the idea of all posting a letter to this person with a title that would get Google to pull something positive.

Her e-mail made me sit back in my chair and think.  Those of us who write online know there are all sorts of ways that direct people to our blogs.  One of the top search terms that sends people my way (after several variations of “Try Defying Gravity”) is “Squirrels In My Pants”, thanks to a post I wrote using that song.  I feel terrible for the people looking for Phineas and Ferb who have somehow stumbled upon me and my stories.

But this search term “I wish I didn’t have Asperger’s” is different.  And it made me stop for a moment.

Who wrote this?

Was it a child with Asperger’s who was struggling and in pain?  Was it a parent responding to a statement made by their child?  Was it a teacher?  An adult?  Someone with Asperger’s looking to counsel someone who was not happy?

Who wrote it?

The thoughts swirled in my head, and at first I wasn’t sure I could write anything.  Without knowing the audience, what could I say?

Then I realized it didn’t matter who wrote it.  Someone did.  And whomever it was needed to know that a) it was okay to search for help and support online, and b) when they searched for that support, they needed to find love and acceptance and understanding.

**********

But what to say?

I can only speak as a parent of two children with autism spectrum disorder.

I can tell our google friends how incredible my kids are.  That with every turn they astound me with what they know and what they can do.

And I can tell them that I know that there are days when it is hard.  Very very hard.  I watch my kids struggle with conversations and team sports.  The things that Dr. Stephen Shore calls “The Hidden Curriculum” – the unwritten social interactions that can confuse so many.

But those struggles morph into incredible insights and perspective and success.  I have seen it.

However…

It’s better to hear from the people who know it best.

Listen to Dr. Stephen Shore talk about his life here:

Or click HERE to listen to Dr. Temple Grandin talk about her book Different Not Less, a collection of stories from adults on the spectrum about their lives, their achievements, and their successes.

Or perhaps…just watch this:

To the person who wrote “I Wish I Didn’t Have Asperger’s”…

I hope you’re finding the love, support and hope you need.  You have a whole community here to love and embrace you for who you are.

And hopefully we’ll help change your mind.

Hey, hey
Did you ever think
There might be another way
To just feel better,
Just feel better about today

Oh no
If you never want to have
To turn and go away
You might feel better,
Might feel better if you stay.” – Change Your Mind by Sister Hazel

**********

Check out all the incredible Autism Positivity posts linked up HERE

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)

Follow

Get every new post delivered to your Inbox.

Join 2,660 other followers