Why am I walking?

Two weeks ago, when I registered for the Walk for Autism Speaks, I wrote this on my donation page:

“It’s not only okay to be different, it’s FANTASTIC!”

Those words were on the wrapper of a Dove Chocolate Bar, given to me by my son’s teachers.  Ask him how his day is, and he’ll say “fantastic”.  Every single time.

When our son was diagnosed on the autism spectrum in 2009, we didn’t know where to go or who to turn to. We didn’t know what the phrase “PDD-NOS” meant. We didn’t know if our friends and family would still be by our side.

Fast forward two years later, and here we are. Our family stuck by us. Our friends are still with us. And along this journey, we’ve made some new incredible friends that have become our family.

We found hope and a new beginning for our family. And it all started here.

We’re walking for all the kids like our son. For the 1 in 110 children on the autism spectrum. For the 1 in 88 military families living with autism.

For the child that was just diagnosed yesterday, and the one that will be diagnosed tomorrow.

We’re walking for hope. And for a bright beginning to their new futures. We’re walking to show that being different is pretty fantastic.

Join us. Please.

When I wrote this, I didn’t know that the child diagnosed yesterday would be my own.

So now, I’m walking for another.

I see the spectrum in my own children.  I see the spectrum in my friends’ children.  I see the spectrum of mothers and fathers coping with this diagnosis any way they can.

We need money to help our families.  My friends need access to doctors, information about scientific research studies,  respite care, support groups and increased availability of services.

My friends need hope and community.  I need hope and community.

I’ll be joined on walk day by my family and by the people who have become my family. We’ll have a picnic at the park and walk by the ocean.

Together we will show the world who is affected by autism spectrum disorder.  It’s me.  And my boys.  And the people who love and care about us.

Wait until you see how powerful we can be when we walk as one.  Join us.  Please.

footloose

“You’re playing so cool
Obeying every rule
Dig way down in your heart
You’re yearning, burning for some
Somebody to tell you
That life ain’t passing you by
I’m trying to tell you
It will if you don’t even try
You can fly if you’d only cut
Loose, footloose
Kick off your Sunday shoes ” – Footloose by Kenny Loggins

Click HERE to find a walk in your area

“You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.” From Welcome to the Club, 2009. For my dear friend, A and anyone who else needs to hear it today. – Diary of A Mom’s Facebook status.  August 8, 2011

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Breathe

At 8:30am yesterday morning, I sat in a small evaluation room at the Center for Special Needs for Children at Tufts Floating Hospital.  The doctor had some papers for me to sign before our appointment began, and she handed me a pen and a blue folder to lean on.

I recognized the folder right away.  It was the same one I was handed on December 22, 2009.  The day Howie was diagnosed.

The Autism Packet.

“Based on the autism diagnostic tests we did last week and our interactions with him, we’re giving Lewis a diagnosis of PDD-NOS.  He’s on the mild end of the spectrum.  I can see how early intervention could have checked off all the boxes.  But when you dig deeper into his play skills, his social pragmatics delay…there’s a lot of deficiencies.  He’s a kid that will fall through the cracks.  You’re really going to have to advocate for him.”

**********

Still breathing…

In the hallway, with my packet and preliminary diagnosis letter in hand, I send out a bunch of texts to some friends.  “They gave him a PDD-NOS diagnosis.”

Words of love and support flooded back in short phrases of 140 characters or less.  “Nothing is different than it was yesterday.” and “Full hug today.  Take the time you need.  Call if you want.  You can do this.” and “You ok?  He will thrive at our preschool” and “Dammit.”

**********

Barely breathing…

I am angry.  Not at the diagnosis.  Not at the label.  At me.  And the whole process.  I’m reeling because I didn’t see the labeling. I tell my friends that “the doctor says he has inconsistent behavior and speech. Not the ‘right’ play skills. An inability to transfer knowledge from different circumstances (i.e. he can make me a Lego birthday cake at home but can’t play birthday party with a play-doh one). Scripted language and direction. “

I tell them that I’m kicking myself for canceling this appointment back in March, when we could have had spring and summer therapy time. And for kidding myself that it was just an articulation delay and nothing else.

I say that I’m beating myself up, thinking that if I had spent less time on facebook or blogging, I’d have spent more time on the floor playing with him, and not leaving it up to his brothers to play.  Learning their behaviors. But I HATE playing sometimes. I am tired of it.

I write that I know this doesn’t change my son.  But it changes me as a mother.  I’m questioning everything now.

“Stop.”  “You are doing and have done everything in your power to make things good for your children.” “You have loved him and seen HIM- not the things that fall under some check-off list.”

“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.”

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Breathing again…

It’s a new day today.  I’m listening to Lewis laugh and play with his speech therapist.  As I sip my coffee, I think back to the hallway at Tufts Floating Hospital.  The office for pediatric oncology is right next to the Center for Children with Special Needs.  I’m reminded that my kids are healthy.  This is not a death sentence diagnosis.  I have been here before.  This time, I know what I’m doing.  But now, I have my club to help me.

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Welcome To The Club was one of the first things I ever read after Howie’s diagnosis.  At the time, I didn’t understand how important this club would become.  The people I have met during this journey have been my lifeline.  They understand my jokes and my pain.  They don’t judge, they only listen.  I felt every single one of them in that room with me on diagnosis day. They are the reason that I am breathing freely today.

I am a card carrying member of this club two times over now.  I can’t think of a better group to travel with.

I move on holding on to what I learn, it’s time to let go of the notion
That the whole world’s against me
Break free of shackles that formed young, time free in now
And now I know, it’s not all up to me, I can count on another
So move on lighter and be free ….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
And so this moment, I just have to sing out loud
And say I love I like and breathe in now
And say I love I live and breathe in now ” – Breathe In Now by George

I saw a different side of awareness the other day.

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

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

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

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

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

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

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

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

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

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

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

blue house

Light It Up Blue

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

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

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

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

“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

30 seconds to go to the bathroom uninterrupted.

45 seconds to heat up my coffee in the microwave for the 4th time today.

5 minutes to take a shower without someone having a tantrum.

10 minutes to eat dinner without someone needing a giant squishy hug.

1 hour for a power nap.  Or better yet,

8 hours of continuous sleep.

I’ve been thinking a lot about time.  It’s not a surprise.

365 days since my son’s PDD-NOS diagnosis.  Today.

One year since I sat for 2 hours in the doctor’s office to confirm what we already knew.

10 minutes to read the “red flags” pamphlet and wonder why no one had given this to us earlier.  40 minutes on the phone with our local autism resource center to learn about support services in our area.  90 minutes in an IEP meeting to create a plan for my son for the next 12 months.

A year.

I look back at where we were last December 21st.  Confused.  Scared.  Overwhelmed.  Alone.

Now, today.  Still confused.  Still overwhelmed.  But no longer scared.  And no longer alone.

A year filled with more successes than failures.  30 minutes of the boys sitting together watching Wow Wow Wubbzy.  A 2 day trip to Storyland.  A Thanksgiving dinner that lasted more than 2 minutes. A bedtime routine that is now 5 minutes instead of 45 minutes.  The day I left the house for 19 hours to see Glee in New York City.

All of these moments could have never happened a year ago.  Thanks to intensive services and lots of therapy.  And time.  We had time on our side.

Our son will have a lifetime of hard work ahead of him.  But we’ll get through each minute together.

When I first had kids, my friend told me that the days drag but the years fly by.

365 days.

A year that started with such heartache.  A moment now filled with hope and promise.  Tomorrow, the clock will start all over again and we’ll be in year two of our diagnosis.

I know that someday I’ll sit with my warm coffee and my hot dinner after a long shower following a full night’s sleep.

I’m ok with that someday not being now.

Time is waiting
We only got 4 minutes to save the world
No hesitating
We only got 4 minutes, 4 minutes” – 4 Minutes by Madonna and Justin Timberlake

Dear Dr. D-

I could just hug you.

If you knew me better, you’d know that hugging isn’t my thing.  But leaving your office today after our first follow up visit since Howie’s diagnosis, I felt like I could fly.

Why?

Because you called me “Super Mom”.

It’s clear I fooled you, but it doesn’t matter.  You said it and you can’t take it back.

You called me “Super Mom”.

You were impressed by how far we’ve come in just a year.  You told me Howie’s IEP was one of the most comprehensive IEP’s you’d seen in a while.  When we talked about all the supports and services he was receiving, you were excited because you could tell it was helping.

You told me I clearly had a great team put together.  Your eyes widened when you saw Howie write his name – not just because it was legible, but because his grip on the crayon was so much better.  We talked about his OT supports and the fact that we’ve worked sensory breaks into his daily log sheet.  You asked about speech, and when I told you he didn’t qualify for direct services you weren’t surprised, but reminded me to keep an eye on his pragmatics.  I told you his one-on-one aide is always with him to help facilitate social interactions in the classroom, and at playdates at home I’m there to help.  I said he was starting to pretend play, and interact better with peers.  I told you it was getting easier.  You said you could tell.

And that’s when you called me “Super Mom”.

You told me to push for a social speech group for him.  Maybe not in preschool, but definitely for kindergarten next year.

When you asked about home supports, you were clearly asking to see if I was getting help myself.  I told you that we used our home services during the spring, but this fall I have kind of let it slide.  I said I just didn’t know how to translate our home issues into a concrete problem to be solved.  When you suggested that the teacher just come in and simply observe – Supernanny style – it made sense.  You said it might be something as simple as listening to our interactions, and tweaking our language.  Even in our small amount of time together, you heard me ask Howie to do things, instead of telling him it was time to do things.  You reminded me that if he doesn’t have a choice in the situation, don’t give him one.  It creates a climate for non-compliance. I didn’t even know I was doing it.

I said the hardest thing at home right now were sibling issues.  It was difficult keeping Gerry from getting frustrated and angry when Howie can’t control his behaviors.  I said that with Lewis I couldn’t tell what were actual behavior issues, or just mimicking Howie’s stimming.  And I shared that it was getting harder to help Lewis understand the difference between right and wrong, because with every wrong choice, Howie is there laughing and egging him on.  You reminded me that this is exactly what the home services are for.

Then, seemingly from left field, you asked me more about Lewis.  Nonchalantly, like it was part of the conversation.  I forgot that you didn’t know about all the EI testing we’ve been through, so I quickly filled you in.  Long story short, he has speech delays but didn’t qualify for services, but we weren’t really concerned about any other areas.  You took it all in, and suggested we do a full developmental assessment anyway through your 0-3 clinic, just to make sure.  The only reason not to, you said, was to keep from raising my anxiety level.  We laughed together when I said that it was too late.  I realized later you were concerned about the younger sibling link to increased risk of spectrum disorders.  You care.  And I’m so grateful.

Your next steps were clear and concise.  In a year or two, we’ll talk about neuropsych evaluations, but you didn’t see it necessary now.  You also mentioned we should start looking into Cognitive Behavioral Therapy methods, because high functioning kids like Howie respond really well to that around age six or seven.  You thought he was too young now at age four, but we should keep it on the back of our minds.

I mentioned that our annual IEP review meeting was coming up in January.  “Don’t let them change a thing”, you said.

Finally, I asked the big question.  Considering all the progress we’ve made in such a short period of time, considering where we are now…was he misdiagnosed?

No.  You were clear.  Howie meets the criteria for high functioning autism.  His successes, you said, were because of the excellent services we’ve received.  And again, you told me “don’t let them change a thing.”

I won’t.  I’ve never been so happy to keep the status quo.

You called me “Super Mom”.  And after this appointment, I feel like I could save the world.

I am I am I am Superman and I know what’s happening.
I am I am I am Superman and I can do anything.” – Superman by REM

On Thursday, I made my triumphant return to storytime at the library.

There was no parade, no confetti, no shouts of “You Go Girl!!”.  But there should have been.

It was the first activity that Lewis and I had ever done together.  Yes, we’ve been to the supermarket, Target, and many other shopping adventures.  But never an actual “activity”.  Never something just for him.  And for me.

It wasn’t always like this.  When Gerry was a baby, we did everything.   We did all those gymnastics classes, music classes, and puppet shows.  I’d take him to the park to play and we’d stay all morning.  And we went to story time at our local library before he was old enough to walk.  Gerry would stay close to me, right in my lap, and while the other kids got up to explore, he always stayed put until the librarian was finished.  We’d spend hours at the library, sitting at the table, reading books, choosing our favorites and taking them home.

When Howie was a baby, we tried all those things again.  Before Howie was old enough for his own story time, I’d try to take Gerry to different activities at the library so he wasn’t missing out.  We had just moved to town and I thought it was a good way to meet other kids and parents.  Inevitably, I’d spend the whole time in the hallway with Howie.  He was either screaming, crying, or running away.  Following close behind would be Gerry, because he didn’t want to be in there alone.  After several attempts, we just stopped going.  I tried a few times when Howie was older (with baby Lewis in tow) and he still couldn’t sit there…for anything.  It was embarrassing.  I felt like the only one there chasing after her kid, covering his ears so the music wasn’t so loud or pulling him away from the crayons because it wasn’t craft time yet.  So after getting yelled at by the librarian for signing up for events and not showing up, we stopped even trying.

When Lewis was finally old enough for his own story time, I was a bit reluctant.  Ok, VERY reluctant.  Once bitten, twice shy.  I thought it was better for us to just do our own thing.  I can read to him.  I can color with him.  I didn’t want to go through the same embarrassment again.

But both my pediatrician and speech therapist told me Lewis needed be around kids his own age.  He needed to hear other 2 year olds talking and he needed to learn how to play and interact with them.  My friend has a 2 1/2 yr old, so we started searching around for activities that we could try – gymnastics, music classes – to get ourselves back out there.  I turned them all down.  It cost too much, it was 25 minutes away, the time of day was bad.  But really, I was just too afraid.

Then, the flyer for story time at the library came home.  A time just for 18 month olds – 3 yr olds.  Free.  Five minutes away. 10:45am.

It was like the library wrote the flyer just for us.  So my friend and I signed up.  Thursday was the first class.

I’d like to say it all went smoothly.  That Lewis sat in my lap and listened to the story and danced to the music and did the craft.  He didn’t.  The crayons were out when we first got there and all he wanted to do was color.  Of course, that was last on the agenda, and I had to keep pulling him away from the craft table.  He stood on my lap during the first story, left the room during the second one, and refused to give up his bean bag during the “pass the bean bag” game.

But you know what?  I didn’t care.

This time, I didn’t care what the librarian or the other parents thought.  We did our best to conform with the story time flow, but if we couldn’t, we didn’t.  When he screamed because he couldn’t color, I gave him his pacifier.  When he couldn’t sit, I let him stand, and when he couldn’t stand anymore, we left the room until he could come back again.  I didn’t force him to give up his bean bag for the game.  And looking around at the other kids?  They weren’t playing by the “rules” either.

When it was time to color, Lewis sat very nicely at the table.  He picked out the green crayon to match his shirt, and colored his little cut out person with scribbles and dots.  And when he was done, we were done.  I didn’t wait for some goodbye cue from the librarian.  I followed my own kid’s cues.  We left the library with my friend and her son.  No meltdowns.  No tantrums.  No screaming and yelling.  Lewis held my hand as we walked down the path to our car and we went home.  Just like that.

To say that my kids are different would be ridiculous and obvious.  Of course they are different – every kid is.  They have different strengths and challenges.  Howie is very articulate, yet struggles with sensory overload, auditory processing and behavior control.  Lewis is the opposite.  Certain activities will work for one child and won’t work for another.  There’s nothing wrong or shameful about that.

What I have to remember is that I am different now too.  I am a different parent than I was four years ago or even two years ago.  I understand my kids’ limits better and when it’s ok to push them and when it’s ok to pull back.  I am more focused on their needs and not conforming to what the librarian wants or thinks.  I attempt to work with in the parameters of the activity, and if my kids can’t do it, we leave and return when and if we can.  I’m not going to make the experience miserable for my child, the librarian or the other families in the room.

No more embarrassment, no more shame.  It’s not worth it.  Because the alternative is to never leave the house.  That can’t be an option.

So when the next Thursday story time comes around, we’ll be there again.  I’m actually looking forward to it this time.

You remind me I live in a shell
safe from the past, and doing’ okay
but not very well
No jolts, no surprises
No crisis arises
My life goes along as it should
It’s all very nice but not very good
And I’m ready to take
a chance again” – Ready to Take a Chance Again by Barry Manilow

The question was easy to answer.

“What do you love about your child?”

The list is long, of course.  Who doesn’t have a thousand things they love about their kid?

But number one?  His smile.

It’s actually the number one thing I love about all my kids.

Gerry and Lewis have very similar smiles.  Big grins with lots of teeth.  And dimples.  They both got my dimples.

Howie’s smile?  It’s…different from his brothers.  Like everything else about him.

No dimples.  Not toothy.

But it’s a smile that just exudes pure happiness.  It’s a smile that tells me the things he can’t say himself.

When his world is closing in on him, when he’s having a “crummy day“, the smile is gone.  No smiles means we’re out of whack.  No smiles mean his body is out of sorts.  No smiles mean we need help.  And a hug without a smile?  Those are the hardest hugs of all.

But if I can make him smile?  If I can hear that infectious giggle that comes from a tickle, or a silly joke, or the promise of “hugs that go on forever and never stop”…then I know we’re ok.

We’re back.

Howie has a smile that tells the whole world how he’s feeling.

And when I see that smile?  It makes me smile too.

(This was written as a part of this week’s Special Needs Blog Hop.  Join us as we talk about what we love most about our children).

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Don’t know how I lived without you
‘Cause every time that I get around you
I see the best of me inside your eyes
You make me smile” – Smile by Uncle Kracker

I had it all planned out for my big November 1st “Autistics Speaking Day” post.

I was writing it in response to the movement by an Australian based organization, trying to get people to stay off Facebook and Twitter for 24 hours today, as a way of showing solidarity and support for those with autism.

I was going to write why I wasn’t going to be silent on this day.  You know, I’m all for awareness of any type, but something about this just didn’t sit right with me.  Part of that was about my ego – I just didn’t think that my Facebook friends and followers on Twitter would notice or even care if I was silent for a day.  Contrary to what my husband thinks, I’m not on there all day long.

Then there was the staying silent part.  My child is quite verbal, and we’ve worked really hard to improve his communication and social speech skills.  Being quiet is contrary to that.  And I’m guessing that my friends with non-verbal children would do anything to hear words.  Any words.  Most of them have moved heaven and earth to help their child communicate.  Why would I stay silent to recognize that?

So I was going to use this space to tell you about my amazing son Howie.  How at age four he looks to the outside world like every other four year old, but he’s not.  We work incredibly hard every hour of every day to help him look that way.  I was going to tell you that his teacher calls it a “dance” – most kids test their boundaries but are able to dance that line and pull back to appropriate behavior.  My kid can’t.  He has to be constantly reminded how to pull back, and if I let up at all, he dances gleefully across that line and we’re done. I was going to write about the hours of behavior therapy and occupational therapy we’ve been through to get us to the point where he can function in an inclusion classroom with an one-on-one aide and can finally draw a picture without a giant meltdown.

I was going to write about what autism is like in my house.

Then…

An e-mail.  From an acquaintance. Her young child had just been diagnosed on the spectrum.  On Wednesday.  She had found my essays online and having nowhere else to turn, got in touch with me.  She was devastated.  Overwhelmed.  Sad, confused, upset, bewildered…you name it.  She had been blindsided.  A routine checkup turned into something else.

I sent her my phone number.  And we talked.

The words she spoke were so familiar.  How did I miss this, she said.  What am I not seeing?  He talks, he makes some eye contact – how is he on the spectrum?  No one sees this in him.  My family and friends think the doctors are crazy.  What did I do to cause this?  Do I change his diet?  Not vaccinate?  Where will he go to school?  How will I deal with therapists in my home all week?  Will he have friends?  What do I tell my other children?  Will he ever be normal?  And what the hell is ABA therapy?

She cried.  I did too.

I know those questions all too well.  We were asking the same ones almost a year ago ourselves.  I know the grief of realizing your child might be different.  I know how it feels when your world feels like it’s falling down around you.

I told her all that.  With my words.

I told her I knew exactly what she was saying.  I have grieved for the life I thought we might have with our son – the preschool class that I thought he’d attend, the family trips I thought we’d make.  I have been in the position of explaining to family and friends why my son is different even though they can’t see it.  I told her that I have been just as overwhelmed and guilt-ridden as she was.  But I also told her that although it might be too soon to hear it, things can get easier.  The earlier the interventions start, the better they work.  I told her that my son has made remarkable improvements in the 8 months since his diagnosis thanks to his amazing teachers and great therapies.

I told her I was here for her whenever she needed to talk.

She said when she read my article it was like hearing her own words in her head.  When she had no one else to turn to, she bravely reached out for a shoulder to cry on.

If I had remained silent, she would be feeling all alone.

So many kids are being diagnosed on the spectrum every day. So many parents are hearing the words “your child is autistic” for the first time. So many parents are feeling like they have no one who knows what they are going through.

If we aren’t talking, if we aren’t sharing OUR stories, how will anyone know that we understand?  How will they know that we get it?

This is why I’m not going to be silent today.  I need to talk.  I need to share my story anywhere I can.

Because I also need to know that I’m not alone as well.

Hush hush, keep it down now, voices carry
Hush hush, keep it down now, voices carry” – Voices Carry by Til Tuesday

Dear Jan the dental hygienist-

I just had to write you and thank you for today’s visit with Howie at the dentist.  I have to tell you – I had been dreading this visit all week, all month really.  Every time I looked up at the calendar and saw “Howie: dentist appointment 11:15am” I got a lump in my throat.  There were a million different ways today could have gone awry.  But it didn’t.  Thanks to you.

Maybe I should back up and tell you what a rotten week I’d had.  Or should I say “crummy week”, because that’s the word that Howie used to describe his day on Tuesday.  The week started with some conversations with a few people who I thought really understood me, but then I realized that wasn’t the case.  Then came Howie’s “crummy” Tuesday – a day where everything went wrong for him at school.  I tried to take away some positives from that day – his teachers had said he was very articulate about why he was having such a hard time – but it was still breaking my heart to see him so angry about school.  Four year olds just shouldn’t have bad days.  That night ended with him asking for his usual three blankets on his bed, plus his weighted blanket, a giant body pillow and his three foot long stuffed dog in bed with him.  The kid was out of sorts even at bedtime.

Wednesday came along with new challenges and guilt.  I took Lewis to the doctor for his two year old checkup.  The kid screamed from the moment we entered the exam room until we left.  And I mean screamed.  He must have some post-traumatic stress thing going on with the doctor’s office from being there so much.  When he was four months old, he had bronchiolitis and we made many trips to that office to check his breathing.  In recent months, we’ve been in to get his ears cleaned after worrying about his speech delay.  Can’t blame the kid for hating the place.  He calmed down enough during the appointment for the doctor to advise me to get an independent speech evaluation.  The guilt was swirling around me as she said “I don’t think he has PDD, but…”, and then Lewis started screaming again.  And in my head, I was screaming too.

Jan, Thursday came and it was Lewis’  2nd birthday.  I was still recovering from Monday, Tuesday and Wednesday.  More guilt piled on me as I realized that I had no party planned, no cake made, and no presents wrapped.  He was falling into the classic “third child syndrome”.  On a day when I should have been celebrating, I was wallowing in family pity.  The day ended ok, after a reminder from my husband that “he’s two – he doesn’t know”, but I still felt like I was failing him and my family.  The kids weren’t happy and I couldn’t even pull together a simple birthday party for my own kid.  What was happening here?

So Jan, you can imagine how I felt when Friday arrived and it was time for Howie’s dentist appointment.  Of course, first we had to get through our monthly team meeting for him at his preschool.  The whole ride to his school I was cursing myself for scheduling two anxiety riddled events in one day.  But the team meeting went really well.  He’s doing great in school and two months in, he’s fitting in just right in the full day inclusion program.  This week had been tough for him, they said, but it was an anomaly and not the norm.  His teachers were looking at this week as a teachable moment – his “engine” was running high all week and he was having a hard time regulating himself.  I told them I was pretty sure he was coming down with the same cold his brothers had, and his sensory issues are usually out of control about 3-4 days before he actually gets sick.  His teachers really seem to understand him and his needs, and I am constantly impressed by how well they work with him.

Even after all this, I was sure I should have canceled that dentist appointment.  We really needed it to go well.  Jan, his last experience at the dentist was miserable.  It was their policy that parents stayed in the waiting room when the kids were having their teeth cleaned, and they stuck with that even after I told them he was on the spectrum and had sensory issues.  Fifteen minutes in, I could hear him crying.  I went to check, and they stopped me and told me he was fine.  When he came out another ten minutes later, I could barely hear what the dentist was saying over his sobbing.  I knew right then we had to find another place.

Which brought me to your practice, Jan.  We had to get this one right or else I feared I’d never get him back to a dentist again.  I talked about it all week.  Offered all sorts of rewards and earning opportunities.   And I made that call that I dread – I called your office before the appointment and told them he was autistic.  I struggle with this all the time, the “should I tell” and the “who should I tell”.  I didn’t want to say anything.  I don’t want my son thought of as being different.  But I had to.  I needed him to be treated differently this time.  I needed you to know before we walked in that door.

And Jan, you were wonderful.  You took us in quickly and quietly told me you had been given the “heads up”.  You looked right at him when you spoke and guided him gently through the appointment.  You told him we were doing “science experiments” when you painted his teeth purple (his favorite color) to see the plaque.  You let him sit on my lap the whole time, and whenever he got nervous, you backed off, talked to him about what you were doing, and took your cues from him.  And he did it.  He had his teeth cleaned, polished, and covered in fluoride.  I was amazed.

When I thanked you for your kindness and understanding, you told me you knew.  You told me about your cousin’s child with sensory issues and your nephew with Asperger’s.  And that clinched it for me.  You got it.  I should have known.

And that’s why I had to hug you when we left.  If anyone knew that I did that, they’d be shocked.  I’m not a hugger.  But it was the only way I could express my gratitude for what you did for us this morning without crying.  You took what could have been a potentially disastrous appointment and turned it into something special.  Life changing.  My son left there with his giant purple balloon and told me he “really liked this new dentist”.  I couldn’t agree more.

On behalf of my family and my son’s teeth, I thank you for all that you did. See you in six months.

Sincerely,  Alysia

P.S.  TGIF!!

Monday morning feels so bad
Everybody seems to nag me
Come on Tuesday I feel better
Even my old man looks good
Wednesday just won’t go
Thursday goes too slow
I’ve got Friday on my mind” – Friday On My Mind by The Easybeats
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