Making a Friend

by Heather on January 25, 2012

It was just a simple playdate – a two-hour window of time one cold January afternoon. But I had been hoping and praying for this day for years.

Carson had made a friend in his class.  And he did it all on his own – no therapist role playing; no teacher intervention.

He and “Michael” developed a friendship like any typical first grade boys. Giggling. Acting Silly. Sharing stories of Mario and company.

For most children, it would only come natural that the next step would be a playdate. For us, the invitation from Michael’s mom was monumental.

Sure, I’ve arranged a million playdates over the years.  But the difference is those were facilitated by me or my friends. My mom-friend would come over with her kids, and they would “play” while we sat in the next room, ready to intervene at the first sign of turmoil.

My close mom-friends get autism and get Carson. They don’t get their feathers ruffled if he chooses to roam off on his own while the other kids play on the swing set. They’re patient if Carson disrupts a board game or topples a carefully assembled block structure.

Carson considers the children of my friends to be his friends, whether they actually “play” or even get along at all.  But he’s never once made a friend completely on his own.  Not once had I ever dropped him off for a one-on-one playdate with a friend whose parents weren’t my friends.

So, as I dropped off Carson at Michael’s house, a mixture of anxiety and excitement stirred inside of me.  Would he be ok? Would he do something “shocking” and never be invited back? And please God, let them get along.  Just for one two-hour window, let there be no fighting.

Carson’s friend Michael has some issues of his own, so I think his mom kind of gets it too.  But we just don’t have that history or relationship for me to know for sure that she understands. I don’t know that she gets that Carson’s lack of personal space is just his way of trying to interact with his friend; or that his repetitive jumping up and down is his way of showing excitement; or that this playdate means so much to him …  and to me.

We live just down the road, and I altered my plans to stay at home in case the dreaded phone call came announcing that things had gone awry. The phone never rang.

When I arrived at Michael’s house promptly two hours later, I heard giggling from the basement.  His mom said they came upstairs only once to get a drink, and they both complained that it was time for Carson to go home.

I wanted to burst out in tears, thanking the mom for having Carson over.

When I was a teenager, my mother once told me I would be lucky to have a handful of true friends over the course of my life.  I’ll be satisfied with one for Carson.

 

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Changes in the Autism Label; Does it Matter?

by Heather on January 21, 2012

Autism. Asperger’s. PDD-NOS. Does the label really matter?

A panel of experts assembled by the American Psychiatric Association has been working on revamping the definition of autism spectrum disorders. Many in the autism community are worked up into a frenzy over what it will mean – and rightly so.

The New York Times reported yesterday that another group of experts, led by the head of the Child Study Center at the Yale School of Medicine, contends that the new definition would so significantly narrow the diagnosis of “autism spectrum disorders” that the overwhelming majority of children currently diagnosed with Asperger’s Syndrome or PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified) would no longer fall under the umbrella definition of autism.

Autism Speaks Chief Science Officer Geri Dawson said in a live chat yesterday that he thought the estimates of the new study probably over-exaggerated the impact of the change in definition, yet the organization was keeping a close eye on it while details are finalized over the next year.

As a parent of a child with high functioning autism, these proposed changes greatly concern me.  I honestly don’t know where my son would fall under the new definition.  At times, it’s been a no-brainer that he has classic autism.  At others, doctors have wondered if he was more in that realm of PDD-NOS.

But the only reason his diagnosis could even be considered “gray” is that we’ve been toiling for years to get Carson to where he is today.  It’s taken five years of intensive therapy from every type of therapist under the sun, thousands of dollars, and countless hours of behavioral intervention.  When most children were enjoying the carefree world of daycare or early preschool, Carson was already working hard with his therapists and early-intervention specialists.

So, diagnosing a kid like Carson becomes more difficult.  And I worry that if not Carson, thousands of kids similar to him could be stripped of the autism label.

Shouldn’t I be dancing in the streets if someone tells me that my son no longer is classified as being on the autism spectrum? No. A change in definition won’t change my son.  Autism or not, he will still struggle to find the words to tell me how his day was; he’ll still need to work ten times as hard as his peers to learn to hit a ball, ride a bike or swim; and he’ll still find himself the odd man out on the playground, struggling to communicate with his peers.

Why does the change in the definition of autism spectrum disorders even matter? Well, it’s all about “the system.” Having the autism label can help in terms of receiving behavioral support. I also believe it provides a framework for understanding from the general school community.

We’ve spent years learning “the system” where we live, and believe me, it hasn’t been an easy path to get the help we’ve needed for our son.  Any change in the system could mean, in my opinion, the opening of a door that leads to fewer services for Carson.

I would fight every step of the way to stop that from happening. But I’ve heard the stories.  I KNOW the pain that many families have suffered, denied services that their children so greatly need.  We special needs parents know that it’s simply a battle for resources.

Any gray area will almost certainly lead to legal battles. Time, money and energy spent by already emotionally exhausted special needs parents.

So, what do we autism parents do?  My plan is to remain aware of the status of discussions, and to continue to focus on Carson’s specific’s needs.

He has a speech problem – we get him speech therapy.  He has difficulty writing – he needs occupational therapy.  Difficulty reading – he needs the help of a reading specialist.  If we stay focused on the needs instead of the label, hopefully we’ll be well-positioned to ride out any bumps in the road on our AUTISM journey.

 

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Video Games Open World of Make-Believe for Son with Autism

January 16, 2012

God bless that little mustached Mario guy.  You know, the little guy from the Nintendo games that many of our children with autism love so dearly. I’m giving that little rascal credit for bringing Carson in to the world of make-believe. Oh sure, we’ve been working with therapists for years to teach Carson play skills.  [...]

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Autism Mom 2011 Reflections, 2012 Intentions

January 4, 2012

It’s a new year; a blank slate filled with endless possibilities.  And as I put past the last overstuffed box of tree trimmings and other glittery holiday decorations, I want to pause to reflect on the past year for a moment. The house is silent, the kids away at school for yet another hour, giving [...]

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Holiday Gift Ideas for Kids with Autism and Other Special Needs

December 18, 2011

Picking out holiday gifts for kids with autism or other special needs can be tricky.  Year after year, toys that I thought Carson would love have fallen flat.  They are tossed aside, collecting dust in the far corners of our playroom cabinet. Sometimes his difficulty with fine motor tasks got in the way.  Sometimes his language [...]

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Dabbling with Alternative Therapies for Autism

December 1, 2011

In my pre-Autism mom days, I was a skeptic.  I didn’t really get the whole alternative medicine thing.  I didn’t buy in to theories that we should avoid medicines, eat organic, refuse vaccinations and all that conspiracy theory stuff. And I certainly wouldn’t have experimented with alternative therapies for any child of mine if the [...]

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Looking For Ways to Protect Our Special Needs Children

November 16, 2011

Ever since the news broke about the Penn State sexual abuse scandal, I’ve been haunted by the thoughts of those poor children that fell victim.  Innocent. Vulnerable.  Now scarred. A week later, a story breaks on the The Today Show about a family that discovered their special needs daughter had been bullied and traumatized by [...]

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Helping Hands for Special Needs Families

November 4, 2011

I’m feeling the holiday spirit, and it’s not even Thanksgiving.  That’s a first for me, and I give all credit to a dear friend who has inspired me and challenged me to think what I can do to help our autism community. You see, my friend has this amazing blog – momastery – and she’s [...]

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Struggling Against the Autism Pit

October 19, 2011

A couple of weeks ago we took a break from our regular nighttime routine of watching old “AFV” shows with the kids and broke out our own videos. Our videos — like lots of other things in our lives — are a jumbled mishmash, unsorted and unlabeled.  So it was a bit of an adventure [...]

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Using the iPad to Improve Communication Skills

October 10, 2011

Friends, please welcome guest blogger Elizabeth Vosseller, a pediatric speech-language pathologist and the director of Growing Kids Therapy Center in Herndon, Virginia. by Elizabeth Vosseller With the sad loss of Steve Jobs this week, I thought a discussion of how to use the iPad to improve communication skills would be an appropriate topic.  Steve Jobs talked [...]

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