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

 

Hammer and Nail

(Editor’s Note: I was contacted by Fun and Function with an incredible offer: would you like an equipment donation to your nonprofit sensory gym? No strings attached?  The answer was an ABSOLUTELY YES AND THANK YOU! And, well, when someone does something that amazing for you, of course I’m going to write about it.  I’m a blogger and a business owner.  That’s what I do.)

The famous Ghandi quote. On the wall in our office at SenseAbility Gym.

It’s an interesting journey – this special needs parenting gig.

When you get your child’s diagnosis, whatever it might be, initially you can feel quite alone.  You think no one has a kid like mine.  No one will understand the challenges he faces.  No one knows what he’s feeling or what I’m feeling.

And then slowly you find your village.  Maybe it’s in person at the drop off for your child’s special preschool program.  Maybe it’s through a support group.  Maybe it’s online.  At some point, you discover that you are not alone and neither is your child.  There are people out there who “get it” and will do whatever it takes to help you “get it” too.

I’m very lucky to have found my village both in person and online.  I have friends who have helped me when I was lost and friends who understand my children better than I do.  We have a team of support, not just for me but for our whole family.

And it’s because of that support that my friend Tina and I were able to open our sensory gym.  We saw a need and wanted to fill it.  We believed in the fact that all children deserved access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics. We wanted the gym to be a place where parents and children could go to socialize with other families who shared similar challenges. To help them find that village.

As we started the business, we found that there were other businesses out there with a similar goal.

One of these is Fun and Function. It was started by Aviva Weiss, an occupational therapist and a mom of six.  She was frustrated by the lack of fun toys for children with special needs so she began creating her own.  And now she’s on a mission to make “different” play fun.

Just like us.

Her company contacted me recently with this incredible offer: “At Fun and Function we believe that special needs children are awesome, and are always on the prowl to connect with likeminded individuals. We would be honored to make a donation to your SenseAbility Gym and we were wondering if there was something in particular that you might have your eye on.”

Who does that?  Oh right.  Companies started by people who “get it”.

After saying something like “Oh my goodness, thank you!  This is huge and amazing!” I asked if there was a way that I could interview Ms. Weiss for our blog.

I asked her what inspired her to start the business and where the idea came from.  Ms. Weiss answered with a familiar answer – she was inspired right at home, by her daughter.  Her daughter needed the types of equipment for deep pressure and calming, but at the time all she could find were things that were too clinical looking and/or very expensive.  She knew she had to change that and knew that if her daughter needed it, there were other kids out there who would need it as well.

We talked about the challenges she’s faced along the way and what kept her going.  We discussed how hard it is to start your own business, to find the money to do it, to spend your own money to keep things going.  But the mission keeps you going – knowing that you are helping families just like yours.

Every word she said rang true for me.  It was as if she was saying the words in my head – all the reasons why we started SenseAbility Gym were the same, all the challenges were the same, and the driving force is the same.

I asked the question that many people ask us here – is there one thing that could help a child with sensory processing disorder?  If you could recommend one product, what would it be?

She answered with a very familiar answer.  There is no one thing.  Every child is different.  Every child’s needs are different.  And they change.  There is no one sensory “tool” that helps every person.  “I can tell you what our top sellers are.  Things like our weighted compression vests are very popular and have been from the start,” she said.  “But not every child needs every item on this list.  It’s why we created the ‘Find Your Solution‘ filter at the bottom of our website.  Parents, caregivers, teachers and adults can enter in their age, budget and need and we’ll help them find the best products for them at the right price.”

I asked her what those favorite items were and what were best sellers from the website.  She suggested their weighted compression vest, the Soft Saddle Scooter, Sammy the Seal Swing, Social Emotion and Guess How I Feel Games, Squishy Gel Cushions,  Cool Chews and Bite Bands.

Here at SenseAbility Gym, we’re in love with the Air Lite Junior Bolster Swing.  Generously donated to us by Fun and Function.

Ms. Weiss and I talked for about 15 minutes until I asked the question that I ask many parents who have older children.  What advice do you have for families who are just starting out on this journey?

Her answer was the best.  Don’t let anyone tell you how to feel or what your child won’t be able to do. It’s okay to grieve and be angry.  But then it’s time to get back to figuring out with your child what they need and what can help them.  Then anything is possible.

Anything is possible.  And when you believe in your child and yourself there isn’t anything they – and you – can’t do.

Like start your own business.  Or your build own community.

I am so grateful to Aviva Weiss and people like her who have blazed the trail for parents like me.

All it takes is an idea and the will to do it.

She found her will by looking at her daughter.

I found it by looking into these eyes here.

Build it and they will come.

“I had a lot of good intentions
Sit around for fifty years and then collect a pension,
Started seeing the road to hell and just where it starts.
But my life is more than a vision
The sweetest part is acting after making a decision
I started seeing the whole as a sum of its parts.
My life is part of the global life
I’d found myself becoming more immobile
When I’d think a little girl in the world can’t do anything.
A distant nation my community
A street person my responsibility
If I have a care in the world I have a gift to bring.” – Hammer and Nail by Indigo Girls

 

With A Little Help From My Friends

It started small.

I happened to see a post from a business on Facebook that they had entered a contest.

A grant contest.

A $25,000 grant contest.

From FedEx.

My eyes got big.

Our nonprofit SenseAbility Gym needed that grant.

Our community needed that grant.

I filled out the online forms and told my business partner Tina about it.  I casually mentioned it at our last board of directors meeting.  As an aside.  Like a “Hey, I don’t know how this thing all works, but I filled out the info and we’ll see if we’re accepted.”

On November 14, I saw our logo listed on the site.  My heart jumped.

I shared it with some incredible amazing fantastic wonderful friends.  Seriously.  There aren’t enough superlatives to describe them.

And they got to work.  They instantly started sharing the contest and our link on their Facebook pages and Twitter feeds.

My friend Patty’s husband Bil suggested we create a Facebook event to remind people to vote.  He told me to make it public so everyone could see it in their newsfeeds and anyone could invite people to it.

My friend Lexi blogged about it.  Twice. So did my friend Kristin.

Writing things like “And parents of ALL these children need and deserve a space that provides all of that for their families, and arguably more important, the community that will inherently come with it.” (from Kristin) and ” Even if it’s not set up in your neck of the country, it could be a model of a gym that could one day be set up near you. If this one is successful, more people will see how incredibly necessary they are.” (from Lexi)

And my friend Jess, who has been there with the gym from Day One, wrote about it too.  And tweeted: PLEASE VOTE for @SenseAbilityGym then RT. I’M BEGGING. #fedexgrantcontest http://bit.ly/XqmY3x @trydefyinggrav @diaryofamom #autism

In her post, Jess wrote: “Please vote for them to win the grant. It’s one click, once a day, through Nov 24th. Don’t worry; I’ll remind you. But please start right now. One click to create community. That’s all ya gotta do.”

So…

What happens when over 2400 people are invited to a Facebook event, and over 400 people actively voting on Facebook, and hundreds of people write Facebook posts daily begging friends to vote (under threat of postings of cat pictures all over their timelines)?

What happens when there are many many tweet and retweets,  and more postings in Facebook groups and on blog pages asking people to vote for us?

What happens when people who don’t even know us invite their Facebook friends to vote for us because they have a child with special needs and believe in our idea?

What happens when my son’s first preschool teacher writes to all of her friends: “today is the LAST day to vote for this awesome small business started by a good friend of mine! Her son was one of my very first students and holds a special place in my heart… Just click on the link and vote…thanks!!!!!! :)”

What happens when my husband is voting for something through Facebook for the First. Time. Ever?

What happens when you add one good idea plus hundreds of incredible friends with amazing social media presence plus a special needs community that comes together to support their own?

It equals over 3300 votes for our little nonprofit gym in only ten days.

And then this amazing thing happened…this I-can’t-even-put-my-finger-on-it thing…

This…whole community came together.

Cheering us on.  Joining us as we watched our numbers rise from 500 votes to 1000 votes to 2000 votes to the “holy crap we crossed 3000” vote tally.

People posting their vote number on our Facebook event page with pride and excitement.

This unbelievably dedicated and supportive community grew up around this voting contest.

And put us in a position to be in the Top 10 of all the businesses entered.

Part of the mission of our business is Community. SenseAbility Gym wants its members to feel welcome, and part of the special needs community.

You’ve done that for us 3300 times over now.

This grant would be a game changer for us.

It would be a game changer for the families in our community.

We want the families around us to feel as supported and loved as we have felt over these past 10 days.

At 11:59pm Eastern time, voting closes.  The contest press release states: “In December, FedEx will review the entries and select and announce the top 100 finalists based on their contest profile and the number of votes they receive from Facebook users. The top six small businesses – including the grand prize winner – will be announced in January.”

Thank you for believing in us and our idea.

Thank you for believing in our children and their potential.

Thank you for being our friends.

Stay tuned.

If you read this before 11:59pm on Nov 24th and want to vote:  CLICK HERE!

“What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I’ll sing you a song
And I’ll try not to sing out of key
Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm going to try with a little help from my friends” – With A little Help From My Friends by The Beatles

 

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