Sleeping Village

It was a typical dinner Monday night when everyone was talking over each other and no one was eating.

There was bickering. Potty talk.  Anything and everything except actual eating.

Since this happens quite frequently, I have a mental list of “conversation” topics that usually redirect everyone long enough to get some food into them in between sentences.

When I say “conversation”, I mean mostly monologues of non-related topics, but each kid is taking a turn with it, allowing the others to eat.

And when I say “topics”, I mean I ask them about Minecraft.  So just one topic.  Singular.

Tonight was no exception.

I entered the cook time into the microwave and turned towards the boys at the table. “So, guys, if you could create your own Minecraft Mod, what would you do?”

(ed note: a mod is a modification made to the Minecraft code.  Gamers write code to create these mods to add additional things to the original game.  My friend Bec at Minemum can explain it all.  I know nothing about it except that my kids are obsessed with watching videos about them and begging me to download them.)

“I would create a space world where things could explode!” replied Howie.

“I would create a place where animals could go and there would be explosions!” said Lewis.

I took my dinner out of the microwave and sat down at the table.

“Well,” I said, “if I was creating a mod, I would make a sensory gym mod.”

I gave Tim a little smile. I was completely kidding.  I half expected them to come out with a “What?! That’s ridiculous!” and go back to discussing how to explode creepers and zombies.

Howie looked right at me.  “A sensory gym mod?”

“Sure,” I said. “It could have stuff in it like at SenseAbility Gym.”

Both Howie and Lewis were quiet for a moment.

“We would call it The SenseAbility Craft Mod!” said Howie.  “We could craft a trampoline out of leather and and blocks.  And it would be bouncy like slime. You’d make it on the crafting table!”

“And you could make a bolster swing too, ” said Lewis.  “You would need string.  And something to sit on.”

I sat in stunned silence.

Howie’s eyes got huge and bright.

“And the villagers – they would be autistic villagers!  They would be the ones who could be in the SenseAbility mod.”

Tim and I made eye contact. I gave him the “wow” look with my face.

“It would spawn autistic villagers and they would be the only ones in the village.  And they would go up to each other and would make the villager sounds and understand each other.” Howie was on a roll and was not stopping.  “And they would go on the trampoline and the swing.”

“Could you craft a weighted blanket?” asked Tim.

“Oh yes, you could do that.” Howie replied.

We were all giggling a little at the ideas, throwing them out one by one.

“You could make a square ball pit with blocks and craft something to put in it!” Lewis exclaimed.

“Could you make a wooden slide?” Tim asked

“YES!” Howie yelled. “You could make a slide.”

“You would need some fidgets too in your inventory,” I said to Howie, “just in case the villagers needed them.”

“Yes,” he said. “And the autistic villagers could trade emeralds for fidgets so they could feel better.”

He looked at me. “Spawning an autistic villager is rare but special, you know.”

I smiled at him.  “Yeah buddy, I know.”

Howie got up from the table. “Let’s play ‘SenseAbility Craft’ right now!”

“Wait, what?  Right now?  You didn’t eat anything!”

But Howie was already gone and Lewis followed right behind.  They went into the other room and pretended to be the autistic villagers, happily trading for fidgets.

I cleaned up their full plates of food and turned to Tim.

“You better start those Java and coding lessons with Howie.  I think he’s on to something.”

**********

It was December 2009 when I was listening to the developmental pediatrician list off the “red flags” for autism that she saw in Howie.  No pretend play, no ability to think of objects as anything other than their literal use.  Focused on the spinning wheels of the car and not the car itself.  Can’t do a pretend birthday party.

It was August of 2011 when I heard the same thing for Lewis.

“You’ll need lots of work and therapy to develop those skills.  I’m not saying he won’t ever have them, but they won’t come naturally.”

I left the office each time with my view of the world and my boys tipped on its side. I was crushed – mostly by the guilt of what I didn’t see. What could I do to help him?  Could I help him?

Turns out my autistic villagers just needed to figure it out in their own time and their own way, through a game that has no boundaries except the limits of their imagination and creativity.

Which, despite what we were told, seems to be endless.

I’m looking forward to the day when they create this SenseAbility Craft Mod.  I hope they let me play and be a part of  their incredible, creative and imaginative world.

Howie on the bolster swing.

Lewis in the squeeze machine. Crafting this one could be tricky…

“Red sun rising in the sky
Sleeping village, cockerels cry
Soft breeze blowing in the trees
peace of mind, feel at ease.” – Sleeping Village by Black Sabbath

 

Child Of Mine

 

“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud'” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because “I didn’t have to.”

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”

***********

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

A few weeks ago, M. Kelter of Invisible Strings posted this on his Facebook page:

Without the words to say “because of my autism”, how might this interaction have gone? Alternative scenarios might have involved a long, drawn out stand off, viewed as noncompliance, leaving everyone exhausted, frustrated and miserable.

Leaving my kid feeling like a bad kid.  A failure.  Different without explanation as to how or why. Removed for long periods of time from his general education classroom as things escalated, keeping him away from his peers.

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.

“The things that make me different are the things that make me ME!”

 

“Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

 

Born This Way (part three)

Note: As I wrote in part one and in part two, I asked Howie if I could share this story 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.  And this time, I asked all three boys if it was okay to share the story.

Chronologically, part three came after part two but before part one.  But this is how it all came out here.

Over the past few weeks since the “big” conversation that wasn’t so big, Howie and I have been talking a lot about autism.  It’s not hard to bring it up – at the sensory gym we have a community bulletin board with information from our local autism resource center, the Doug Flutie Jr. Foundation for Autism, and Birdhouse for Autism (an app and web based application for tracking therapies, medications, sleep and anything and everything related to a child’s well being). So the word comes up whenever we’re there.

But it had always remained between us.

We’ve also had some discussions about other kids we knew who were autistic.  Friends who had given us permission to share that information.  Each time, it was met with a smile.

Yet for some reason, I never mentioned the fact that his younger brother was autistic too.  Again, this is on me.  In my head I still thought there had to be the right time and place to talk about it.  That Lewis should know first.  Or there had to be some specific chain of events to make it “the right way”.

Apparently, I don’t learn my own lessons.

Two weekends ago, all three kids were sitting at the kitchen table.  We were listening to music and the boys were talking about whether or not they had good hearing.  Gerry said that our whole family had bad hearing.  Before I could step in and protest with my expert hearing skills, Howie said “No, I have super hearing.  I can hear and see things that others can’t. I have what’s that word again?”

He paused.

“Oh yeah.  I have au-TIS-m.”

(so yes, the accent is on the wrong syl-LA-ble.  But still.)

Gerry looked over at me and didn’t say a word.  Neither did I.

“I have autism,” said Lewis matter-of-factly.  “I just have clogged ears.”

Howie looked at him and said, “You have autism too?  Well, you do have a super memory.  You know the whole grid of the Marvel Super Heroes characters on the Playstation game.”

“Yup,” I said.  “Lewis has autism just like you, Howie.”

“Does our whole family have autism?” Howie asked.

“No. ” I said.

Gerry looked at me and quietly asked, “Do I have autism?”

I shook my head no.

And that is how Lewis found out that he was autistic too. No big reveal. No grand plan. Just “yup, you’re autistic.”

Gerry got up from the table to get some more milk.  I pulled him aside for a moment.

I thought back to a conversation that Gerry and I had almost two years ago to the day:

“Don’t you think he should know about his autism?  So he understands?  I know most of his friends are from his school and are like him, so that’s really good.  But at some point, shouldn’t he know?  Because really?  Sometimes it’s very stressful for me that I know but he doesn’t.”  His eyes teared up a little.

I knew I had to choose my words very carefully here.  This…was important.

“Yes, of course he needs to know.  Dad and I just have to figure out the right time.  He’s only five.”

“Do you have friends who have kids with special needs?  Kids who are older?  Can’t you ask them when they told their kids?”

And then my kid wows me.  Again.

“You know, it’s not fair.  All his timeouts.  At first I thought they were good.  Teaching him.  But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up.  And you hit something and cause a lot of damage.  It’s not your fault that the car didn’t work the way it should.  Right?”

I’m in awe of this kid.  Of how much he loves his brother.  Of how much he gets it.

“Mom.  Shouldn’t he know so he understands?”

I touched Gerry’s arm and brought him into the other room.

“You remember you wanted me to tell Howie that he was autistic?  Well, I did.”

He looked right at me.

“Thank you,” he said.

**********

Since then, the topic has come up quite a bit.  My boys – all three of them – are attempting to understand what autism means to them and for them.  There have been attempts at one upping each other with “well, my autism means I can hear the grass grow!” and it makes for a good discussion about how brains work and no, you can’t really hear the grass grow. In quizzing Howie if he washed his hands, he told me that only someone with autism could have good enough smelling to smell how clean his hands are.

Then there was Howie’s question to me one morning at 5am: if everyone in the world had autism, does that mean no one in the world has autism?

For which I had absolutely no answer.

Just this afternoon came “Is autism sensory?”

And of course there was the moment when he told me his gift was part of his soul. When he realized he was born this way.

But my favorite comment came from Gerry last week.  We were talking about how all of us in the family have brains that work differently. It’s important to know that and understand why so instead of getting frustrated and struggling with the things that are hard for us, we can acknowledge the challenges and use our strengths to cope with them. We talked about what I wrote in part two:

“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. “

I told him that this was why right now we’re focusing on positives that come with autism for Howie.

“I like that,” Gerry said. “I like that he looks it like it’s his superpower.”

Me too.  Me too.

my three superheroes

“My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir

“There’s nothing wrong with loving who you are
She said, “‘Cause He made you perfect, babe”
“So hold your head up girl and you’ll go far,
Listen to me when I say”

I’m beautiful in my way
‘Cause God makes no mistakes
I’m on the right track, baby
I was born this way
Don’t hide yourself in regret
Just love yourself and you’re set
I’m on the right track, baby
I was born this way” – Born This Way by Lady Gaga

For a great way to talk about autism with your child (or to learn more yourself), check out this great booklet from The Autism NOW Center and The Autistic Self Advocacy Network at http://autismnow.org/wp-content/uploads/2013/11/Welcome-to-the-Autistic-Community-Adolescent.pdf

 

Born This Way (part two)

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.

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'”.

“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

 

Home

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

(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

 

Here Comes The Sun

When Gerry was a baby, I signed up for a free parenting class run by our local school district.  It was free and I was a new parent so I figured I was supposed to be there.

On the first day, the instructor gave us some homework.

We were to go home and look over a list of attributes and choose the ones that we felt were most important for our kids.  Our spouses were supposed to do the same.

The list looked something like this:

Please circle those words that you want for your child (check all that apply):
affectionate          talkative           sensitive
follower                  successful       quiet
shares easily         leader               active
even tempered    friendly            mature
self-confident      cheerful            eager to learn
independent        outgoing           happy

I remember sitting with Tim as we looked over the list.  He chose words like successful, self-confident, and independent.

I chose just one: happy.

**********

Gerry’s anxiety level always peaks around the third week of school.  I know this because it seems to happen just around “Back-to-School” night.  Every year since about second grade, I’m hunting down the adjustment counselor to ask her to check in on Gerry for the next few weeks.  The excitement of the new school year dies down and his anxiety about school work and friends goes sky high.  It manifests itself in difficulty sleeping, stomach aches, headaches and general grouchiness about anything and everything.

Then it calms down after about a week.  Every once in a while it flares and we make it through.  And then it’s better.

Last year, in fourth grade, it didn’t calm down as quickly.  He was really struggling.  He couldn’t focus in class, he was daydreaming, and when he’d click back in he was getting upset that he was missing the instruction.

The difficulty sleeping went on longer than usual.  As did the pleas to stay home.  I asked him what was happening and he said he just got lost in his thoughts and couldn’t turn off his brain, both at school and at home.

Every one told us that fourth grade was the year that all the issues came out.  The work gets harder and even the best students start to struggle.  And if there was any underlying anxieties or fear of failure…this is the year that we’d see it.

So we scheduled an appointment for a neuropsych evaluation.  Not because we suspected any disorder or concrete diagnosis, but because we wanted more information on how he processed information and where his strengths and challenges are.

You see, we’re old hats at all this testing stuff.  Having been through it with his two younger brothers and all.

Last January, Gerry sat through a whole day of tests.  One right after the other.

The results?  A little bit of anxiety here, a little Asperger-y there, a little bit of attentional issues over here, and a big gap in his verbal processing skills and his actual processing speed.  Meaning he has ideas in his head going a mile a minute but it’s hard for him to get it out verbally and on paper the way he wants it, leading to huge frustration levels and added pressure to succeed. No actual diagnosis but a clear understanding of where he does well and where he has challenges.

Oh and he needed glasses.  Part of the focus issue in the classroom was an actual focus issue.  He couldn’t see the board. Of course.

We talked with Gerry about the results of the testing.  Well, Tim did.  I couldn’t find the right words.  They talked about turning emotional problems into intellectual problems and working through them that way.  The strategies and accommodations suggested by the psychologist seemed to make sense to Gerry and the spring semester of school ended well.

And then came the last week of August.

**********

It started when we were on vacation.  We were renting a house on Cape Cod for a week.  I made him bring his summer work with him because of course he hadn’t touched it all summer long.

He worked on it for ten minutes, got angry, and walked away.  That night he was up until midnight and then back awake again from 2am until 4am.

His demeanor changed instantly.  The grumpiness returned.  The back talk.

The unhappy kid.

**********

Last week was the third week of fifth grade.  And right on cue, the anxiety reared its ugly head.  The who/what/where/why/how questions about school and band and piano came fast and furious. Gerry stopped sleeping.  Monday and Tuesday night he was up past 11pm, stuck in that spiral of “I have to go to bed/I can’t get to sleep/I have to get to bed/Now it’s so late I will never get any sleep/I can’t get to sleep”.  Crying.

I asked him to try to relax and visualize a place where he felt “happy”.  He was quiet a long time.

“The house,” he said. “Just in the house.”

He couldn’t find that place to retreat to to calm him.  He had nowhere that made him feel good.

Feeling a bit of sadness come over me, I said good night for the fourth time and left the room.

And I’ll admit it.  I was tired too.  My sympathy level was not there.  I told him he just needed to go to bed.  That I was done talking about it.

Ten minutes later, he came back into the room one more time.

“Mom,” he said. “I think I’d like to see a counselor.”

“Okay,” I said slowly. “What made you decide that?”

“I need someone to talk to about why I can’t sleep.  Someone like you.  But who won’t get mad at me.”

I stopped for a moment.  This was big.  And as ego-bruising as it was…he was right.  He needed someone other than me.

“Of course.  I’ll make some calls in the morning.”

Gerry turned back to bed and went right to sleep.

**********

The anxiety piece is the one I struggle with the most as a parent.  Both Gerry and Howie get incredibly anxious – it’s about different things and it manifests itself differently but it’s still there.  Howie’s behavior changes and he stims more.  Gerry hits me with question after question about what is going to happen next and when and with whom and the questions keep coming until he’s up all night thinking about it.

I struggle partly because I can’t make it better.

I mostly struggle because they get this from me.

And because of that…I knew this couldn’t wait any longer.  I had to find a way to get my happy kid again.

**********

This morning, I had an intake appointment with a counselor.  He seems like a great fit for Gerry and we set up a first appointment for them for next week.

I told Gerry about it this afternoon.  “He seems really nice and I think you’ll like him.”

“Oh good,” he said, barely looking up from his iPad.

“Are you feeling okay about this?”

He looked up at me.

“Yes.  Thank you.  I actually feel really happy.”

I couldn’t wish for anything more.

Happy Together

“Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here
Here comes the sun
Here comes the sun, and I say
It’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here
Here comes the sun
Here comes the sun, and I say
It’s all right” – Here Comes The Sun by The Beatles

 

Hot Wheels…Beat That!

I’m incredibly honored to be on the Modern Mom site today.  They have teamed up with Hot Wheels to promote their Take 10 challenge:

There’s one thing that all moms can agree on: kids grow up way too quickly. Before we know it they are out of diapers, heading to kindergarten and off to college. We can’t stop time, but we can take 10. Turn off your iPhone, turn on your imagination and give your child 10 minutes of your undivided attention. Hot Wheels^® is here to get you started.

I am sharing our love of all things Hot Wheels over there (including our homemade Halloween Hot Wheels costume), and how those little metal cars changed our lives.  I am grateful to Rachel at Mattel for the opportunity to tell our story.

Please click HERE for “Driving A Deeper Conversation“

 

Put Yourself In My Shoes

“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

 

Rock-A-Bye Baby

“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)

 

I Shall Believe

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