When all else fails, I say a little prayer.

Last night after The Boy fell asleep, I sat on the sofa with The Husband and started to cry.  "It shouldn't have to be this hard." 

And The Husband, put his hand over mine.  "It'll be okay, babe." 

Because that's what he says when he's run out of words of consolation.

It's been a rough couple of weeks.
   
I am not a religious person.  I don't go to church or really believe in God even though I was raised Catholic, taught Sunday School (while in high school) and worked at a Rectory.  I'm pretty much an Agnostic, borderline Atheist.  But this isn't about God or Jesus.  It's about faith.  It's about the power words can provide when you are searching for serenity. 

That is where I am today, because I've been saying this prayer all morning (well...skipping the last 5 or 6 lines because like I said, I am not a believer). 

I can't force people to do the right thing when it comes to The Boy. 

I know I am doing the right thing.  I know I am doing all that I can for him.   

Now I will just need to have faith. 
 



What gets you through the hard times? 

Building a Dream School

I've been thinking about this for while.  Especially once the Turning 5 process began and all the schools I was considering were in the City, Westchester, Queens, Brooklyn, Long Island. 

Aside from the District 75 schools and the ASD Horizon/Nest programs, there is not a single school dedicated to children with autism in The Bronx.

Let me be more specific.  There is not a single school dedicated in The Bronx for children with autism like The Boy.

The Boy is somewhere in the middle.  And so many children fall into that category. Bright kids.  Sensory seeking kids.  Kids who don't how to make a friend.  Or carry on a conversation.     

What I discovered last year while touring, applying and talking to directors of these special needs programs is that while they accept the autism classification, they do not accept children with behaviors.

Think about that for a second.  A child with autism.  With no behaviors.     

After being rejected from so many schools, I had a candid conversation with the director of my dream school.  She pretty much said, if The Boy didn't have any of his behaviors, if he didn't need the constant redirection - he would have been accepted.

Last night I recieved a call from my friend Gen.  She also happens to be The Boy's former ABA therapist. (She is also pursuing BCBA certification.)  She knows everything we've gone through in the last year.  And she said, "It's great that you write your blog, but we need to really do something."

Gen wants us to start a school in The Bronx for kids like The Boy.               

The Boy needs a school where they follow a combination of ABA and TEACCH.  The Boy needs a school with a sensory room, with an OT who is on staff not contracted.  The Boy needs a school with speech pathologists and Behaviorists and Special Education teachers and assistants who have a true understanding of autism.  The Boy needs a nurturing environment.  The Boy needs a school with sensory friendly classrooms.  The Boy needs a school that involves the entire family. 

Does this sound like the kind of school your child needs?  
Well...Let's create one.  WE need to "be the change that [we] wish to see in the world."

Yeah, I know this seems like a pretty lofty idea.  But every dream starts somewhere.

If you live in The Bronx, if you're a parent of a child like The Boy, if you're a service provider, teacher, therapist and social worker and are interested in our "Building a Dream School" project, email me at autismwonderland@gmail.com


*This post was inspired by many events that have happened over the course of the year and by a Kick in the Blog.   
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 At first, dreams seem impossible, then improbable, and eventually inevitable.
~  Christopher Reeve

Any dream worth dreaming, is worth the effort to make it some true.~ Evan Gourley


Never give up on a dream just because of the time it will take to accomplish it.
The time will pass anyway.
~  Unknown

Keep Calm & Carry On (I needed a reminder)

Whenever The Boy starts running back and forth, flapping his hands, flailing his arms and mumbling in his high pitched voice - I know he's nervous, stressed, excited, flustered.  I take him by the arms, bend down so we're at eye level and say:  "What do you need to do?"

The Boy will look me in the eye for a quick moment.  "Calm down."

And then I give him a piece of gum and/or an activity (play dough or let him jump on the bosu) I know will get him refocused.  

Well this week, I'm stressed out over kindergarten (surprise, surprise). With every day that passes, it just gets worse.  More than once this week, I've had to stop and count to ten backwards.  I've had to press my hand against my chest and remind myself to breathe in our breathe out.  I've had to close my eyes and remind myself to take these next few weeks, 10 minutes at a time - because 1 day at a time is just too much right now.  Even still, I've stressed myself into 2 big puss pimples.  (Sorry if this creates a gross visual.)  And then last night I stressed out about it in a FB status update:  

With only 13 days left until this kid starts kindergarten, I'm starting to panic. Stressing myself into a pimple (2 big ones actually). And then watching some of the neighborhood kids go off to college. I couldn't help but wonder, if we'll see that day. Then I smacked myself silly - let's just get through kindergarten.

I didn't really smack myself silly.  Though I'm sure I needed it.  Instead, some wonderful women helped me calm down:

~ K will bring good changes to your world, we lived through that stress and came out the other side smiling, stay involved and true to yourself, your voice will be the most important tool, listen to your gut, you will find you are advocating for those whose (parents included) who mightn't be strong enough to be heard on their own.

~ Stop future trippin'

~ Whatcha panicking about? He can "read" your feelings. So chill. If you stay cool, he'll get that vibe. Nothing to panic about...he's going to be fine. There WILL be bad days, REALLY bad days, and you know this...but there's gonna be good ones, GREAT ones too. Has he visited the school? Met his teacher? Did you write a note about what to expect of him? You're happy with your choice right? Now go with it.

~ We were lucky...our journey to Kindergarten happened so quickly (we put our oldest into a year round program, that had already started) so our plan to have 1 more month last year ended abruptly. This turned out to be good for both the kid and me. Enjoy this. Don't fret it.

   

Next week will be dedicated to 

Prepping for Kindergarten 

(my activity to keep me refocused) 

Autism Moms: A Camaraderie of Soldiers

Yesterday I took The Boy to his last "official" session of sensory gym for the school year.  There's a male therapist there who jokingly refers to the waiting room as "The Women's Group."  Because the mothers in the room talk, gossip, complain (usually about The Board of Ed), exchange advice, laugh and sometimes we cry. In the last year, I had become close to two mothers in particular.  Every week, they were there to listen to our Turning 5 saga, to lend support, to listen.  And it was comforting having these conversations without having to stop to explain a term or an acronym.  These moms - got it.

Anyway - yesterday I had to say goodbye to Liz and her daughter, Izzy.  Izzy was moving on to another school and would no longer require the services of the sensory gym.  Her new school had an OT and sensory gym on site.  Every week, upon seeing me Izzy would walk up to me and ask to touch my earrings.  Yesterday, I made sure to wear my favorite pair - I knew it would make her happy.  At the end of Izzy's session, I hugged Liz goodbye and wished Izzy luck on her first day of school.  I told Liz I'd miss her and that I'd keep in touch.  Maybe we'll meet for coffee, I said, I want to hear about Izzy's first week at her new school.  

Yesterday also got me thinking about the two other mothers (Judy and Caroline) that I'd gotten close to this year.  The mothers who toured and applied to the same schools I did.  Judy's son attends the same school as The Boy.  The started out in the same EI class.  And Caroline, I met at one of the tours.  During the tours, I'd run into the same parents, their faces may have been different but the expressions always the same: worried, concerned, stressed out, tired, anxious, frustrated and still just the slightest bit hopeful.  I remembered Caroline because she looked like someone I knew.  We exchanged emails during one of the tours and since then every few weeks or so, we'll exchange an email.  It was the same with Judy.  We'd text or email to "check in."

And even this blog site and my facebook fan page.  The support and words of advice that I've received from other moms, moms going through the Turning 5 process and the Turning 5 veteran moms.     

I needed that extra support. I'm grateful for it.  It was a comfort to know that other mothers were feeling all the things that I was feeling.  That I am not alone.

Recently I came across an article entitled "Autism Moms Have Stress Similar to Combat Soldiers" and it's true.  And similar to the stress of soldiers, autism mothers also share a soldier's sense of camarderie.  I think our bond is different than a typical friendship. Aside from being mothers, autism links us together.  And as much as we may value our indivual friendships (outside of the autism community), our bond is necessary.  Our "women's group" is vital to our sanity.  Because unless you've been through through the trenches of autism, battling the Board of Education, you have no idea what it's like to stomp in our combat boots.

So thanks to every mom that helped me get through this last year.

Just as soliders have a creed, so should we.  This is my adaption -

I feel like the Private Benjamin of Autism Moms - a frivilous woman walking into a committment on a whim and discovered, it's much harder than she ever imagined.  But in the end - Private Benjamin kicks butt! 

Wordless Wednesdays: A Loser Like Me (Performed by Glee Cast - video/lyrics)

Yeah, you may think that I'm a zero
But hey, everyone you wanna be probably started off like me
You may say that I'm a freak show (I don't care)
But hey, give it just a little time, I betcha gonna change your mind

All of the dirt you've been throwin' my way
It ain't so hard to take (That's right)
'Cause I know one day you'll be screamin' my name
And I'll just look away (That's right)

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me! A loser like me!

Push me up against the locker
And hey, all I'll do is shake it off, and getcha back when I'm your boss
I'm not thinkin' 'bout you haters
'Cause hey, I could be a superstar, I'll see you when you wash my car

All of the dirt you've been throwin' my way
It ain't so hard to take (That's right)
'Cause I know one day you'll be screamin' my name
And I'll just look away (That's right)

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby i don't care)


Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me!
A loser like me!
A loser like me!

Hey you over there, keep that 'L' up, up in the air
Hey you over there, keep that 'L' up, 'cause I don't care
You can throw your sticks, and you can throw your stones
Like a rocket, just watch me go yeah
L-O-S-E-R, I can only be who I are!

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me!

Just go ahead and hate on me and run your mouth (So everyone can hear)
Hit me with the worst you got and knock me down (Baby, I don't care)
Keep it up and soon enough you'll figure out
You wanna be, you wanna be
A loser like me! (A loser like me!)
A loser like me! (A loser like me!)
A loser like me!

The Living Thing Inside Your Child (Rediscovering Puff the Magic Dragon)

I loved watching Puff the Magic Dragon growing up.  However, a few months ago, I watched it again with The Boy.  We'd been reading Peter Yarrow's Puff the Magic Dragon to The Boy at bedtime and thought it would be fun to watch the 1978 TV special.

When I watched the opening scene, I couldn't help but start crying (I know, I am a big ol cry baby).  Because little Jackie Draper sounded like he may have had autism.          

Bald Doctor: We have come to the conclusion that your son...

Tall Doctor: Will not, nor can not...
Short Doctor: Speak, communicate, nor indeed...
Bald Doctor: Relate in any way to the world around him.
Jackie's Father: But doctors, we know that. He hasn't said a word in such a long time.
Mother: Can't you give us some hope that he will finally speak?
Tall Doctor: Alas, the case is hopeless.

Considering the year this was written in the 1970s, I could very well imagine doctors telling parents that their children were hopeless.  Then Puff comes on the scene.  And I see Puff as this hippy ABA sort of therapist who is determined to find the ''living thing" inside Jackie Draper.      

Puff: Now, I'm going to borrow the living thing inside you and place it INSIDE Jackie Paper. Your living thing. You wonder what it is? It is that what causes you to laugh and to cry and to care. It is that which makes apples crunchy and tells your nose to tingle on a crystal winter's morning. It's kept in your left ear, you know.

Isn't that what we all work towards with our children - finding the Living Thing?  The thing that makes our children laugh and cry; the thing that allows them to relate to us and the world around them.  The thing that allows them to imagine, to nurture their creativity, their empathy.

I know it's what we work towards.  We use books, toys, more books and music.  If one thing doesn't work, we move on to something else.  Sometimes we reintroduce  things that haven't worked in the past - hoping it could work the second or third time around.  The thing is we keep trying.  We never see The Boy as a hopeless case.  All of our children have the Living Thing within them.  Sometimes, it just takes parents, caregivers, teachers, siblings, family members a little longer to find it.       

We are like Puff.  Looking for all sorts of fancy stuff.   Trying and always hoping.  Having the courage to try new things - because even if we're not successful at one thing, at least we know we've made the effort.  And we continue to have the courage to move and try other things.

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Watch Puff the Magic Dragon (in 3 parts)

Three Years After Diagnosis: Does It Get Any Easier?

(I started to write this before we left on vacation, I just never got around to finish it.  So here it is - better late than never.)

May is a strange month for me.  The unofficial start of the summer season, sweet and bitter.

2006: Sweet: I found out I was pregnant with The Boy on Memorial Day.

2008: Bitter:  The Boy was diagnosed with Autism.

2010: Sweet: Last Memorial Day I was pregnant for the second time.

2010: Bitter:  By August, I wasn't.

2011: Sweet: Earlier this month The Boy was accepted into a new kindergarten program called ASD Horizon.  And if you're reading this on May 31st - we're on are way to Disney World, Florida.  Our first family vacation where we're taking a plane.  We are pulling The Boy out of school for week. We deserve this.    

I remember when The Boy was first diagnosed and services began.  Early Intervention is supposed to be a 24/7 - there are no holidays.  And even though the therapists urged us to go on vacation.  We didn't.  We were prisoners in our home - afraid to miss a single session.  And on the weekends, there was laundry and errands and sometimes more therapy.  And we were afraid to take The Boy to new places, never knowing how he would react.  And there was no way we could even think of taking a plane.

I think about that summer of 2008, when The Boy was first diagnosed.  The summer full of questions and fear.  And loss.  And disappointment.  And blame.  Blaming myself for all the things I did not see. For allowing myself to wait until The Boy turned two before I started the evaluation process.

But by September of 2008, The Boy started at the Harry H. Gordon school.   By September, The Boy had words and could sign "give me" and "more."    

We've lived with autism for the last three years.  And now he talks so much.  Yes, much of it is still scripted and rote, as therapists call it.  But he can get his needs met.  Sometimes he even answers our questions.  The Boy has come a long way. And the feelings of loss and disappointment and blame have subsided. 

The fear still lingers - but it's a different kind of fear.  I fear budget cuts and lack of appropriate services. But I no longer fear for The Boy.  I don't fear for his future.  Especially not now, after our trip to Florida.  He truly surprised me.  And I can't help but feel ashamed for underestimating him.  (But that's for another blog - later this week.)               

I think about how much I've learned in these last three years.  How much The Boy has taught me.  I know that he has a bright future.  There is a light in his eyes.  And he is happy.  He loves us.  And I know that we will not fail him.  

But...have our lives gotten any easier?  Has living with autism gotten any easier?  That's what every parent really wants to know.  That was what I wanted to know three years ago. 

The answer is - NO.  We struggle every day.  But for every struggle and challenge - there is  success.  Every. Single. Day.  And I savor the sweetness of our every day success - no matter how big or small.  They make the bitter easier to swallow. 

 

While our lives haven't gotten any easier, I will say that it has and will continue to get better.  That is the difference. We've gotten better at living with autism.  We've gotten better at meeting The Boy's needs.  And that's the sweetest and truest measure of success.   

TTLG: "Me? Courageous?" by Patty O. of Pancakes Gone Awry

My friend called me courageous today. 

Me. Courageous.

I don’t think anyone has ever called me that.

I’m kind of reserved, a book worm, if you will, and I am definitely not the life of the party.

I am deathly afraid of heights and would never, ever go bungee jumping or hunting in Africa.  I’m not much of a thrill seeker.

No, I’m just stay-at-home mom of three kids, one of whom happens to have autism.

A mom who sees a huge need in our area and has decided to do something about it.  We have no social skills group in our town, though there are plenty of kids who desperately need one. 

Instead, I have recently decided to start a social skills group in our area myself.  One that uses LEGOs to teach kids to work cooperatively.  I found a center that will train me in this program, but it costs money. 

A lot of money. 

This is why I applied for a Pepsi Refresh grant; the money I win from this grant will cover training and many of the supplies I need.

It is because I started this project that my friend, who happens to be the most active autism advocate I know, called me courageous.

My first instinct was to deny her compliment.  Who, me?  Courageous?  Pffft.  Not me!

But the more I thought about it, the less I dismissed her opinion.  I realized that parenting a child with autism does take courage. 

It takes courage to take your child in for a diagnosis and listen white knuckled as some stranger puts a label on your wonderful little boy. 

It takes courage to seek out help for your child, to take her to numerous therapists and specialists and to follow their advice.

Taking your child to a birthday party takes levels of courage I imagine would be necessary for going to war, because you know things could turn ugly faster than you can say “Sensory Meltdown.”

Courage is imperative when you sit your child down and explain his diagnosis with him, desperately trying to convince him that he’s not strange or weird or bad in any way, that he’s just different.  

You need to be brave when your child has been made fun of because of her differences.  And it takes courage to do your best to convince her that she’s perfect just the way she is.

Courage is a necessity as you fight the schools to ensure your child gets the services he needs.

And I suppose it is brave when you decide to quit waiting around for the system to provide the services your child needs.  When you take matters into your own hands and start a support group or a play date or a LEGO social skills club.

So, I will no longer scoff when someone says I’m courageous.

Because I am courageous. 

And so are you.

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Please consider voting for my Pepsi Refresh Project.  Throughout the month of May I need as many votes as possible, so I can win the $5,000 grant which will pay for my training and supplies.  Thank you so much!  To Vote Now click on this link.

Patty O. is the mother of 3 kids: a 7 year-old boy, a 5-year-old daughter, and 2 year old son. Her oldest son has Sensory Processing Disorder and is on the autism spectrum, while her daughter also has SPD. Patty is currently stay at home mom, but used to be a college and high school English teacher. Please follow Patty at Pancakes Gone Awry.