April is Autism Awareness month, as most of you have probably already heard by now.  As a parent of a child on the spectrum, I sometimes forget that not everyone is “aware” of what autism looks like.

Life before autism feels like a lifetime away for me. So, it’s so hard for me to recall what my knowledge or understanding of autism was before my son was diagnosed.

Like many of you, I think my image of autism was shaped by the movie “Rainman.” Certainly there are people on the spectrum who share certain characteristics of Dustin Hoffman in the movie. But that character bears little resemblance to the many people I’ve met who have autism.

Over the past five years, I’ve developed many friends with children on the autism spectrum. I thought about each of all those precious children – each so unique and special in their own way – and I realized that was the message I must share.

Misconceptions of autism abound.  The image you may have of autism – likely shaped by Hollywood or the media – may look nothing like your child’s classmate, your neighbor’s son, or your friend’s daughter who attends a special school for children with autism.  Children on the spectrum are as diverse in their gifts as in their needs.

The common thread among them all is difficulty – to some degree – with social communication. It can be subtle in its symptoms – as simple as not knowing how to talk to peers. But it can be as severe as being non-verbal.

Many, but not all, children on the spectrum also have motor skill difficulties, sensory processing issues, and speech and language difficulties.

Let me paint a picture for you of some of the sweet children I know.

Of course, there’s my own “Carson.”  On the verge of turning 8, he’s affectionate, adores his big sister, plays a mean game of Mario Kart, and just earned a “gold medal” at Tae Kwon Do for being most improved in the latest belt ceremony. His biggest struggle is language, and that is now translating into difficulties with reading.  That holds him back from making friends, especially in large groups. Yet, he desperately wants to join in the fun with other kids. Sometimes he resorts to negative attention-seeking behavior to interact with his peers. He’s intellectually “average,” though language certainly contributes to learning difficulties. He also struggles with fine motor tasks and has bilateral coordination issues.

My friend Carrie’s 10-year-old son, “Aidan,” couldn’t be more different from Carson. He’s a whiz at building and drawing, spending hours constructing Lego cities. He has to be forced to interact with other children, his interest in construction bordering on obsession.  He also struggles with language, even though he’s gifted intellectually. While he’s in a regular 4^th grade classroom, he requires a one-on-one aide to keep his behavior in check at school.

Then there’s my friend Amy’s five-year-old non-verbal son, “Andrew.” His receptive skills are excellent, so she knows he’s not completely locked away in his own world. Yet, his behavior is increasingly becoming more aggressive as the frustration over his inability to communicate grows.  He attends a self-contained autism classroom.

I could tell you stories of lots of other children, each vividly different from those I’ve mentioned. And that’s what makes autism so difficult to treat. We all want a roadmap for helping our children, but there just isn’t a one-size-fits-all approach because autism manifests itself in such different ways.

I hope I’ve shed some light on what autism can look like, but I’d like to share with you what I see as five of the most common misconceptions of autism:

1-    People with autism are math wizards or gifted artistically. While I do know of some children on the spectrum who are gifted with numbers, I know just as many who are not, including my own son. And while I’ve seen Youtube videos of gifted musicians, I haven’t even heard of any in my own personal autism circles.

2- Autism is an emotional/behavioral problem. Autism is a neurologically based disorder. Recent studies prove that there is a physiological difference in the brains of children with autism. It is not the result of bad parenting or emotional problems. It’s specific cause is still being researched, but scientists now seem to be leaning towards a combination of genetic and environmental factors.

3- Children with autism are incapable of building personal relationships. My son has an extremely close connection with his big sister, lavishes our new puppy with affection, and begs for me to set up playdates with his BFF at school, “Michael.” Yes, social interaction can be challenging for those on the spectrum, but it is not an insurmountable problem for many. Social skills groups conducted through a speech pathologist or behavioral therapist help many children on the spectrum develop social communication skills.

4- People with autism have lower IQs. Many people with autism are intellectually gifted, many are average, and some are cognitively below average. It is a spectrum disorder, and the abilities of each person on the spectrum vary widely.

5- Autism can be cured. Research shows that intensive early-intervention therapy can vastly improve the outcome for children diagnosed with autism. Even though some parents in the autism community tout that their children have been “cured” through special diets, supplements and other such bio-medical interventions, there is no scientific evidence that there is any cure to date.

As I did my typical back-and-forth kid-schlepping routine on Friday, I heard the news on my car radio played over and over and over.  The Washington Post used the news as a teaser ad to entice people to buy the paper that day – the Centers for Disease Control and Prevention released new numbers showing that 1 in 88 children is being diagnosed with autism today.

I had already read the news the day before, so it wasn’t a big shock.  But with each radio replay, the significance of the announcement began to take shape in my mind.  It’s an epidemic, and we MUST do something to figure out its cause.

It flooded me with painful memories of when we first learned of my son’s autism diagnosis. And it brought a tear to my eye to know that many, many more families will get that news — this year; this month; even today.

For us, autism is our story. Our life.  We live the heartbreak of seeing our son struggle to read, piece a story together, and even make friends in our neighborhood overflowing with children.

And yet I know, we are the lucky ones.  Sweet Carson is on the “high functioning” end of autism, and we have been very, very blessed to live in a community with great schools and to have the financial ability to help him where the school and our insurance company have left off.

But what about the 1 in 88 children diagnosed in the inner city? Is the neighborhood school going to provide those precious children with the therapy need? The answer is unequivocal – no.

What about the single parents, with not a moment to spare as they work two jobs to put food on the table. Can they afford to take time off for the never-ending school meetings to fight for services for their child? Do they have the ability to shuffle kids from Dr. appointment to therapist? My guess is that many do not.

Fate has dealt its cards, and my son is one of the “1 in 88.” But it’s not just OUR problem. It’s society’s problem. It affects each and every tax-paying person in this country, and we MUST figure out why autism is on the rise.

Why should you care? Children with autism need help, and the law in this country guarantees them a “free and appropriate education.”  What does that mean? Simply put, it means that the government has an obligation to do what they can to educate these children. And their needs can be enormous.

For some children on the autism spectrum, they need behavioral therapists to even get them to a place where they can sit in a classroom.  Others need intensive speech therapy. Some kids need one-on-one support to keep them on task in a classroom.

Some kids on the spectrum are in self-contained, specialized autism classrooms.  Others are blended into regular classrooms with special education teachers and assistants helping them.

This all translates into MONEY. Autism is going to cost this country billions of dollars if we can’t put a stop to it, and soon.  Autism Speaks today announced that autism’s cost to our country has reached $126 billion a year!

Not only is it a drain on our educational system, it is going to be a financial drain on our social security and welfare systems if these children grow up to be incapable of supporting themselves.

And of course, it is a financial drain on families. Families are going bankrupt as they struggle to pay out of pocket for services for their children with autism. In case you didn’t know, schools AREN’T providing everything these kids need in terms of therapy, and insurance companies aren’t usually paying either. The diagnosis can be a financial disaster for many families.

So, what can we do?

Educate our lawmakers about the importance of SIGNIFICANT, CONTINUED funding of autism research.

There has been lots of promising research over the past year, including brain-mapping studies that have shown patterns in brain development of babies and genetic studies.  But we are FAR, FAR away from any conclusive answers.

Donate.

If you are able, make a contribution yourself.  There are lots of local organizations supporting scholarships for families struggling to pay bills, and the national organization, Autism Speaks, also helps fund research and advocacy programs.

Educate.

Learn about the signs of autism. Help others understand what it means to a have a family member, classmate or neighbor with autism.

Be a friend.

And on a personal note, be a friend. Isn’t that what we all want in this world?

Our kids may seem different on the outside. They may not speak like your child, or maybe they’re a little “obsessed” with certain subjects. Perhaps they have angry outbursts more frequently because they don’t know how to express themselves in any other way.  But they have much to offer, just like any other human being. And believe me, they could use a friend.

It’s just three simple words, but three words that many parents of children on the autism spectrum long to hear from their child – I love you.

We know it in our hearts. We believe it with our soul.  But we may never hear it spoken from the lips of our children.

Some children with autism can’t speak. Some have voices but they’re locked in their own private world, unable to communicate their heart’s desires.  Others babble on incessantly about their small-world obsessions, but struggle to truly read and understand the emotions of others.

My son repeats the words back to me when I tell him I love him every night as I tuck him in to bed. But the words aren’t his own –  they’re ingrained in his head as part of our nighttime ritual.

There’s never once been a spontaneous “I love you.” It’s just that he never thought to tell me.

And he struggles just as much with finding the right mix of words to explain his frustration or anger.  He made us giggle one time in a fit of rage as he spit out, “I want to break people’s hearts.”  We think he picked that up from a song on the radio.

Sometimes I think he just doesn’t quite know what to do with his emotions as they bubble up to the surface at unexpected moments.  About a year ago, I was shocked when I looked over at Carson at the end of a “Nanny McPhee” movie and found his eyes brimming over with tears. When I asked him if he was sad that Nanny McPhee was going away, he buried his head into my chest and was inconsolable for about the next hour.  I had to practically carry him out of the movie theater.

I considered his tears a small victory because he actually “got it.” He was demonstrating that he actually comprehended a situation from the perspective of another person, and it made him sad.  That’s no small feat for a child with autism.

At nearly 8-years-old, he’s just now putting the puzzle pieces together in his mind, sorting out the maze of his emotions.

Even though he doesn’t share his words of affection, I still know what’s in his heart. I know it in his big squeezy hugs at night and through his Eskimo kisses.  I know it when he climbs on my lap before bedtime, settling down for a story. But I also know it even when he calls me a “mean mommy” or throws a temper tantrum when I tell him it’s time to do homework.  But yes, I’d still love to hear it.

Yet, I know I’m one of the lucky autism moms. My son’s brand of autism didn’t strip him of outward signs of affection or attachment.  Other moms aren’t so fortunate.  But I know those moms must feel it in their gut too – never spoken aloud, but felt deep in their souls.

This lazy Sunday afternoon brings back memories of a few short years ago when I couldn’t possibly make it through a weekend afternoon without taking a nap.  A long, deep nap that only a sleep-deprived parent can fully appreciate.

For years  – yes, literally years – Carson woke up between 4 and 4:30 in the morning, EVERY SINGLE MORNING.  Bed time at 8, bedtime at 11, a busy day running around outside, a day lazily watching “Max and Ruby” reruns – it just didn’t seem to make a difference.  Brad and I were in a constant state of exhaustion.

Then one day he snapped out of it. I don’t know why or when exactly. I just thank God every day that the “hideous period” in our lives is over!

The memory makes me so appreciative of how our lives have changed for the better over the past few years.  Raising a child with autism is not easy on both a physical and emotional level. But yes, things have gotten much better.

For those of you just starting this journey, I thought it would be helpful to answer some questions about our autism journey in the hopes that maybe something rings true for you.  We’re only five years in to this, and I have lots and lots of questions myself.  But we have also learned a lot along the way.

As they say in autism circles, “If you’ve met one child with autism, you’ve met one child.” So, I’m not suggesting our path is the same as yours, or that worked for Carson will work for your child. But maybe you will find some glimmer of hope as I share our journey.

What were the first signs that Carson had autism?

From a very early age, it seemed we always had little “issues” that would pop up.  Nothing scary, nothing that had me totally freaked out, but little things that in hindsight were definitely early signs of autism.

The first was when Carson was three months old, his pediatrician noted that he had significant flattening on the left side of his head and that it was causing some asymmetry in his facial features. We took him to see a neurosurgeon who specialized in cranial-facial issues.  Long story short, Carson had to wear a corrective helmet specially molded to his head for about 8 months, 23 hours a day.

While the head-flattening certainly isn’t a sign of autism, we later learned that Carson had low muscle tone, which many children on the spectrum have. It probably accounted for his inability to move his head much in his crib, resulting in him resting his head in only one direction.

The big red flag was speech.  By the time Carson turned one, it was obvious he wasn’t speaking the way he should.  Thank goodness we had an awesome pediatrician who was on top of it.  She suggested we get him evaluated through our county.  While they brushed us off at first, they suggested we check back in six months later.  By one-and-a-half, the county recognized that he was significantly delayed with speech and language.

We started private speech therapy at that point, but he made very little progress.  Plus, his behavior was so unpredictable, it seemed like a waste of time.

At two-and-a-half, Carson still only had about ten words.  That’s when a team of specialists at Georgetown University Hospital dropped the bomb that it could be autism.  They also picked up on something that had been overlooked by all the professionals who had seen him up to that point – his motor skills were delayed as well and they recommended starting Occupational Therapy immediately.

I had always felt that he was a little “slow” with his motor development, but nothing really to cause alarm.  The one really odd thing that stuck out to me was that he would never use two hands together to hold his bottle. He also started walking a little late at around 14 months.  I chalked it up to him being a roly-poly toddler.  I was dead wrong. His team of specialists at Georgetown told us he had motor planning difficulties, also common to many children on the spectrum. It affects everything from his ability to write legibly to his ability to learn how to swim, play sports or even ride his bike.

The other big sign was his behavior.  Though he was generally a happy baby and toddler and appeared to be quite social, we began seeing signs of out-of-control behavior.  Between two-and-a-half and three-and-a-half, Carson’s growing frustration over his inability to communicate led to screaming fits all day, every day. It became very clear to us in that year that he did indeed have autism.

What therapies have we tried?

You name, we’ve tried it. At least we’ve tried most of the mainstream therapies out there.

The bulk of efforts, however, have been spent with Applied Behavior Analysis (ABA), speech therapy, and occupational therapy/sensory motor integration therapy.

How much do we do?  At the peak of our intensive therapy, we did about 8 hours a week of ABA in our home, another 2 hours of private OT, one hour of private speech therapy, and a special ed preschool program five mornings a week which also included 150 minutes/week of speech and another 80 minutes of OT. Whew… it makes me exhausted thinking about it.  Did it make a difference? Absolutely!

What do we today? We are no longer doing ABA or private OT. But we do continue private speech and have also added vision therapy one hour a week.  In addition, Carson receives 90 minutes of speech through our county and another 40 minutes of OT, plus we have placed him in a private school program that incorporates group lessons with a speech therapist and lots of gross motor skills development in the gym. Carson also participates in a Tomatis listening therapy program through his school.

Is there a therapy that made the biggest difference?

Everything combined has made a big difference, but if I had to pick one therapy, hands down it would have to be ABA.  Without ABA therapy, Carson’s behavior would have prevented us from even considering placing him in a regular classroom environment.  His behavior significantly impacted our ability to teach him, so getting his behavior under control was critical.  We still have challenges, but it’s not even on the same playing field as it was even two years ago.

In addition, ABA was an excellent method for teaching Carson all those things that typical kids pick up on their own – everything from names of objects, to classifications of things in his environment, playing games, building puzzles, and much, much more.

If there anything I would change in terms of what we’ve done with Carson so far?

I feel good about what we’ve done and tried so far.  But if I could do it again, I would have started sooner with a unique program I found in our area referred to as Sensory Motor Integration therapy.  We swapped out our two hours a week of OT for this Sensory Motor Integration therapy when he was about five, and I felt it more comprehensively addressed Carson’s motor planning and fine motor issues. The program he attended is here.

Where do I see Carson down the road?

This is a big, scary question for me.   I really can’t think much beyond the here and now.  But I can say this – I will never stop dreaming big dreams for my son, and I will do everything I can to help him find his way in this world.

Last year I had the privilege of hearing Temple Grandin speak at a disabilities conference.  I will never forget her core message – find your child’s strengths, and do everything you can to cultivate their gifts.  It’s a great message for every parent, not just the parent of a special needs child.  I’m working on that day-to-day.

It feels like I’ve been through this a thousand times already, but some things never change.  Stomach in knots, head pounding, I take deep breaths and try to get my emotions under control. It’s another meeting at my son’s school, and it makes me physically ill.

Endless, stressful, gut-wrenching meetings at the school are just part of the life of being the parent of a child with autism.  Individual Education Plan (IEP), Extended School Year (a fancy name for summer school), revisions to goals, Behavior Implementation Plan, progress reports — it really doesn’t matter what we’re meeting about, it just hangs over my head for days like a big black cloud.

Early on I was a blubbering mess every time we left the school.  It’s not that we were failures at getting what my son, Carson, needed from the school.  In fact, we’ve been hugely successful over the years by going to the meetings prepared with knowledge of the laws and the system, and armed with the support of a parent advocate and private behavioral specialist.

But five years in to our autism journey and still I rarely can make it through a school meeting without shedding at least a tear or two. Nothing is worse than having to sit through a two-hour meeting where you and all five other people in the room are dissecting, analyzing and scrutinizing your child’s every behavioral problem, speech deficit, coordination issues, learning disabilities, and on and on. Frankly, it can be overwhelming and depressing.

By the very nature of school meetings, you are forced to focus on problems. That’s why we’re there. We’re not there to throw a party in celebration of Carson’s achievements, but to focus on what he needs to be successful going forward.

Day-to-day I make a conscious effort to stay positive. I try to focus on the baby steps that will get us from point A to B. Like every mom, my life is about routines, schedules, packing lunches, signing permission slips, schlepping and working.  There isn’t much time for soul searching and reflection.

But when these school meetings come around, they always seem to suck the life out of me.  They force me to take a step back from the clutter of our everyday lives and really focus on the big picture of my son’s autism journey.  These meetings are a way of developing our roadmap, even though I’d sometimes rather get lost in the woods.

I dread these meetings not just because of the sadness that they evoke. I hate them also because of the potential for conflict – the natural push and pull between a school system with limited resources and a mama bear who is not going to back down in a battle for her son.

Raised voices. Clenched jaws. Experts talking over one another. Higher ups called in to bring order and make peace. Been there, done that. I hope that’s that.

Our meetings are less contentious than they were three years ago. A familiarity and respect for one another has bred a generally agreeable relationship with the school. But I never let my guard down. Too much is at stake.

My strategy for trying to survive these meetings is to attempt to talk myself in to a state of emotional detachment prior to the meetings. As crazy as it sounds, I try REALLY hard to remove my son from my thoughts and think about the issues we’re discussing in black and white terms – the language in the goals, the number of minutes of speech therapy, the placement for summer school. It usually works… at least for a moment or two.

And then at some point in the course of the meeting, someone will make reference to how far Carson’s come; what a sweet and loving child he is; how his mischievous smile makes them laugh. It breaks the spell and brings him back to life. Then come the tears.

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.

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.

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.  That may sound strange if you don’t have an autistic child, but for those of us who do, you know what I mean.  Our sweet children take life so literally. A box is simply a cardboard six-sided container; a doll house — a small plastic replica of a home; dinosaurs — inanimate objects that sit nicely on a shelf.

For years the world of make-believe has been closed to my son. While other children joined together at playdates to build a magical castle made of sheets thrown over chairs, Carson sat alone, content in entertaining himself with the wheels of a car and more recently the  Wii.  While children gathered on our street to organize a game of cops and robbers, Carson chose to stay inside.

And then one day a couple of weeks ago, the door seemed to crack open.  I heard him quietly talking to himself in the room over from where I was sitting at my parents’ house.  I assumed he was entertaining himself with his DS game. Fifteen minutes in to it, I checked on him and was stunned.  He had taken a bunch of little plastic Mario characters that he had received as a gift some time earlier and was playing.  Yes, creating dialogue between the characters, engrossed in his imaginary Mario land.

“Don’t do that to my brother,” I heard him say.  Mario was giving Bowser a firm reprimand.

“Carson, are you pretending with your Mario characters?” I asked, holding my breath as I awaited his response.  “Yes, I’m pretending it’s Bowser’s castle.”  Stunned. Simply stunned.

So, I have to give a  big thumbs up for Mario and his wacky world of blue turtles, princesses named Peach and hump-backed, spike-headed dragons.

Many a time he had packed up a backpack full of toys to take to Grammy’s house.  But it was just part of his getting-ready ritual, rather than signaling any real intent to play with those toys.  This time was different.

Why now? I can just picture that little Mario dude pushing and pushing a heavy door in Carson’s brain, hoping to crack it enough to show him the magical possibilities of Mario world.  One day, he gave it a final shove and it did the trick.

Three years ago we weighed the decision over whether to get a Wii for the kids.  I worried whether it would be too hard for Carson to play because of his difficulty with fine motor tasks.   And I didn’t want to spark an obsession with video games.  Well, we decided to get one anyway and focused on picking games that promoted movement.  Some time later, Carson asked for a Mario kart game and that’s where his love affair with all things Mario began.

He was Mario for Halloween last year, Luigi the year before. His favorite gifts for Christmas — the Mario sports mix game, a Kinex Mario race track, Mario T-shirt, towel and robe. Mario has definitely permeated this first grader’s brain.  And judging by all the other Marios on Halloween at his school, he is not the only one!

One of Carson’s favorite things to do on the iPad, much to my chagrin, is to watch various videos posted related to Mario.  Let’s just say some people have way too much time on their hands! Anyway, I suspect he got the idea of pretending through one video where a little boy showed his vast assembly of Mario stuffed animals and plastic characters, and acted out little scenes between them.  In the past, it wouldn’t have triggered anything. But with a little divine intervention, he watched it when his brain was ripe to the possibilities.

So, this is my defense of video games and all things Mario.  Yes, I would rather have Carson join in a spontaneous game of soccer with the kids down the street, or that he invite a friend over to play his favorite board game. But kids aren’t exactly knocking on our door asking him to play. He’s awkward in groups and lacks the communication skills to ask to join in the fun. It breaks my heart, but it’s the truth.

And honestly, he gets much enjoyment out of playing Mario.  He has a  couple of little neighborhood friends who share his love of Mario, and I pray continue to accept his differences.  Nothing is sweeter than listening to them talk while playing their games.

Squabbling over who gets to be player 1. Laughing over the goofy “Miis” they’ve created. Talking about their favorite characters and race courses.  Yes, it’s a beautiful sound for an autism mom who just wants her son to be just like any other kid.  God bless you, Mario.

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 me just a moment to think.  In the whirlwind of life as a mother of two elementary school children – one with autism, one without – these moments are too infrequent.   It’s in these infrequent pauses from busyness that I’m able to take stock of where we’ve been and where we need to go.

And I’m filled with gratitude — gratitude that we’re making baby steps forward. A word becomes a sentence.  A sentence weaves into a story.  Chicken scratch letters are suddenly neatly written between the lines.

The tantrums are fewer. Scars on my hands from nails dug deep in to the flesh are now faint. For a while now, we’ve been plodding forward out of that dark tunnel of autism.

It’s still hard coping with having a child with autism.  I’m slowly coming to the realization that it always will be. But day-by-day, year-by-year we’re moving forward.  And that brings me great joy. The puzzle pieces of Carson’s own special brand of autism seem to be coming together, and I feel like I can exhale – at least for this one fleeting moment.

You see, I’m feeling upbeat today because I “think” we’ve overcome a big hurdle.  Every year the first few months of school seem to go smoothly for Carson, then we hit the holidays and everything just falls apart.

I used to approach the holidays with dread.  Out of routine translated to an out-of-synch child. Downtime was difficult time.  There was no chance to regroup and recharge.

As we approached this holiday season, I was on guard. Carson and I had both been sick for more than a week.  Carson missed 7 days of school – more than he EVER has. With only two days left before school was out for the holidays, I was determined to get him healthy if only just to get a small taste of school before the break.

He cried, complained, and incessantly whined about going back to school.  Oh no…  could this be the slippery slope that we usually encounter this time of year?

Then he surprised me.  Once he got to school, I never heard another complaint out of him.  We then sailed through the holiday without a hitch.  Now two days under our belt post-break and I’m cautiously optimistic.  Smiles, excitement, even laughter as I pick him up from school.  Again, exhale.

This time last year, we were in full-fledged crisis mode at home.  Every time he was faced with a task he didn’t want to do, it resulted in an angry outburst, throwing toys or even a nasty temper tantrum.  We had to call in our ABA therapists for some intensive help.

Yes, what a difference a year makes.  Was it a new school? Maybe just maturity and growing self-awareness?  Perchance all those years of therapy are paying off.  I can’t say for sure, but I’ll take it.

So as we enter 2012, I have to say a little prayer of thanks. I’m so grateful for how far we’ve come; so hopeful that there’s more on the way.

I’ve begun many-a-year with a resolution or two.  But, frankly, I don’t need the guilt when I stumble, as I’m sure I will.  365 days is a loooong time after all.  Instead, I’ll settle for New Year’s INTENTIONS and ASPIRATIONS.   Here it goes.

My INTENTIONS and ASPIRATIONS for the year are to:

– Set small, manageable goals that I can work on daily with Carson.  Small baby steps give us both a sense of accomplishment and keep me from feeling overwhelmed by it all.

– Continue to connect with other autism moms and families through this blog and other avenues on a more regular basis. I’ll even put it down in writing. My GOAL is to write at least 2 blog posts a week. (Did I really just put that in writing??)

– Take care of myself through regular exercise, better diet and “mommy time outs.”  (I know, I know…  just had to put that in there since it’s there every year.)

Let’s give it a shot!  I’m wishing you all lots of love, peace, joy and stamina in this year ahead!

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 skills made it difficult for him to play a game with a peer.  And sometimes he just didn’t get it.

So, last year I went on a mission to try discover new and different toys and games that I thought Carson would not only enjoy, but would benefit from.  After all, the best form of therapy is play!

I have to admit, I couldn’t find any great lists.  I had this grand scheme in mind that I would test out a myriad of toys with Carson and my other autism mom friends.  But, sadly, that never happened.  It’s a miracle I’m scraping this list together a week before Christmas.

Nevertheless, I’d like to share with you some toys and games that I’ve discovered that have been a big hit with Carson, or that I’m planning to try out this year.  If you are anything like me, you’re still putting those finishing touches on your Christmas shopping, so hopefully this will help give you some gift ideas for your child with autism or other special needs!  I’d love to hear what’s been a big hit with your child too.

I’ve provided links to these toys, just so you can see what they cost and read other reviews.  I’m in no way getting credit for any purchase.

I would like to make a plug, though, for purchasing these toys if possible from a locally owned toy store.  I’m lucky enough to live near Go Bananas toy store in Northern Virginia.  This place is a gold mine for toys, with tons of unique and interesting toys that you don’t find often in big box stores.  Plus, the owner, Mary, is a former teacher herself and has lots of great ideas!  Visit your local toy store for more ideas!

Nintendo Wii --  Two years ago we debated whether to make the plunge and buy a video game.   While I thought Carson might enjoy it, I worried that the games would be too difficult for him given his motor skill difficulties.  At the time, he was obsessed with a couple of TV shows, so I liked the idea of breaking that cycle and getting him engaged in something that required him to get off the couch.    Today, I can’t imagine life without our Wii.  Yes, Carson loves it (too much probably).  But the best benefit we’ve seen is that it gives him a way to connect with other kids.  When Carson’s “typical” friends come over to play and they play the Wii together, I love to listen in on the conversations.  Yes… real conversations between Carson and his friends.  They talk about the games they like, characters, etc..  It’s music to my ears!

Carson would say that his favorite games are anything related to Mario.  I would say that my favorite games for him are Wii Sports and Wii Fit.  Both give him opportunities to work on balance and coordination.   But the unexpected benefit has been language development!

Mini trampoline with handle –  We bought this when Carson was just three, and only recently got rid of it because it was falling apart from years of use and abuse.  It’s a great way to get their blood flowing during those cooped-up winter days.  Many therapists also believe jumping on a trampoline for a few minutes before doing academic work can actually help calm and focus a child.

Razor Rip Rider –  This was Carson’s big gift for Christmas last year, and it was a big hit.  Kids in the neighborhood were always asking if they could take a turn!  He hasn’t mastered riding his bike yet, more out of fear than anything at this point.  But he loves riding this around.  The only caution is that it’s important to require a helmet when using this.  It does 360’s and it would be easy to flip over, though I’ve never had that happen.

My Little Sandbox Big Builder – This comes in lots of different configurations, and is awesome for sensory play and encouraging imaginative play skills.  It’s basically a mini sandbox with mini gadgets that fit with whatever theme you purchase.  For instance, this one comes with a rake, shovel, construction vehicles, rocks, etc..  Go Bananas carries lots of different versions of this.

Rush Hour Jr. by Thinkfun.  This game is great for developing visual perception and cognitive skills.  Players must first align a variety of different vehicles on the board game in a pattern that matches a playing card.  That in itself can be a challenge.  But the game itself is to maneuver the vehicles around the board so that the ambulance is able to get through the “traffic jam.” The playing cards are at different abilities, and believe me, some of them are very difficult.

Angry Birds Knock on Wood Game by Mattel.  This is a new purchase for this Christmas, so I don’t have any first-hand experience with it yet.  I found it interesting because it combines Carson’s interest in video games with a game that requires visual/spatial skills!  Players draw a card and then have to use blocks to build the structure shown on the card.  The fun part is they get to knock the structure down by flinging a character at the structure, just like the video game.

Hedbanz for kids by Spin Master Games.   This is another game I haven’t tested out, but am getting for this Christmas.  I like it because it looks like something my typical 10-year-old daughter will enjoy playing as much as Carson does.  We’ll probably have to modify the rules of the game so that Carson can play, but it requires each person to put a card on their forehead and then ask the other players about it.  It sounds like an awesome game for developing language and problem solving skills.

Gears, gears, gears by Learning Resources.  Carson got this as a gift a few years ago.   I thought it was the coolest thing in the world, but it was just too difficult for him at that point to put various pieces together on his own.  Plus, there are no “instructions,” so it requires imaginative skills to get started.  But it’s exactly those reasons that I’m getting it out again now that Carson is 7, and finding much more success with it.  It requires fine motor skills to put the various gears and gadgets together, and a little imagination to think “outside of the box” on what to do with it.  Also, I know lots of kids on the spectrum are very mechanically minded, and will love this building kit.

iPad – I guess it goes without saying, this is the best “toy” out there for special needs children right now.  I almost hate to mention it because the price tag is so high.  But one option is to consider asking relatives for a  gift card from Apple, which can be used towards buying it.  I bought one this summer that was supposed to be “mine.”  The truth is, my son and husband probably use it more than I do!  I’m just starting to get my arms around the possibilities with it.  Right now, I love downloading kids books, especially the “Bob Books,” which include  a lot of interactive tools for teaching reading and spelling. I also love the Dexteria app for developing motor skills, and Sentence Builder for developing language skills.  There are lots of websites out there with reviews on apps specifically for special needs kids.

For other suggestions, check out:

Toys R Us Differently Abled Toy Guide

Fisher Price Toys and Play Time Tips for children with special needs

Fat Brain Toys