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

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 powers that be of pediatric medicine – the American Academy of Pediatrics – hadn’t recommended it.

Let’s just say that my experience with autism has made me much more open-minded to alternative theories of modern medicine and treatments for autism and chronic illnesses.  I no longer believe that traditional doctors have all the answers.  And it wouldn’t surprise me that if it turned out that all the garbage we ingest in modern America is playing a significant role in the rapid increase in autism over the past decade.

We’ve dabbled in our share of experimental treatments – gluten free/dairy free diet, audio integration therapies, and therapies to address primitive reflexes.  Did they work?  It’s just so hard to say.

Yes, Carson has made tremendous progress over the years, but we’ve tackled autism by a therapy bombardment approach.   Since he was three years old, he’s been in therapy overload.  Some things I can say with absolute certainty have made a difference for him – ABA therapy and speech therapy.  But I can’t say for sure about some of the others.

And that’s what’s just so hard as a parent of a child with autism.  There is just so much out there, and very little scientific evidence that any of it really works.  My approach has been to ask other moms, teachers and therapists what they’ve tried and what they’ve seen work.  But I’m always second-guessing our decisions.  Always wondering if we’re squandering time and money with modern day snake oil salesmen.

Vision Therapy

Our latest foray in to this gray area of autism treatment is vision therapy.  For years now, various teachers and therapists have raised concerns about Carson’s vision. He  looks at things out of the corners of his eyes;  he sometimes hunches over his work as if unable to see what’s on the paper; and he has difficulty tracking moving objects.

His eyes have been tested every year at his annual wellness exam and we’ve even had him evaluated by two ophthalmologists.   He’s gotten the all clear each time.   But this year as things intensified with efforts to get him to read, his vision abilities became a real concern.

So, we took him to a so-called developmental optometrist.  The verdict – his tracking ability is well below a typical seven-year-old and the recommendation was intensive therapy for probably about the next 18 months.  (I’ll do a separate blog post on what this treatment is all about).   Sigh…  Somehow I knew that’s where we were headed.

The theory among many so-called “developmental” optometrists is that many children with autism and other learning disabilities actually suffer from an inability to sustain focus, track objects and then translate what they’re seeing in their brain to make sense.  It can manifest itself as poor reading ability, other learning disabilities and lack of coordination.

Makes perfect sense to me.  The problem is most ophthalmologists completely disagree with the theory, saying there’s no scientific evidence to back it up.  In addition, the American Academy of Pediatrics has come out staunchly against it, raising similar concerns.

What to do. What to do. The pre-autism-mom-Heather would scoff at the idea of spending money on something established medicine is against.  I’ve been a Washington journalist for years, and it’s supposed to be about the facts.

But the new Heather – the one whose always searching and hoping for some new treatment that just might be a breakthrough for her son – just can’t walk away from it.

Don’t get me wrong. We’re not going in to it blindly.  I’ve researched, scoped out doctors, and talked to other parents and teachers. For some kids, it seems to make a difference.  So, we’ll give it a shot, science or no science.  I’ll keep you posted on how it goes.

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 her own teachers.

In both cases, the adults involved were in positions of authority involving the most vulnerable of children.  In both cases they horribly abused that trust.  I can only imagine the raw pain and anger these families must feel.

As a parent of a 7-year-old son with autism, these stories scare the hell out of me.   My son struggles to piece together a simple narrative about his run-of-the-mill day.  He misinterprets emotions.  And I’m confident he’d completely miss the mark on any creepy “clues” that an authority figures’ behavior was inappropriate. I shudder at the thought of how vulnerable he really is.

In the wake of the Penn State incident, my husband and I have chatted about discussions that need to be had with our “typical” 10-year-old daughter.  She’s smart as a whip and old for her years, and even that conversation is going to be tricky.  But we’ve been wondering how to even start such a conversation with our son?

While I was checking in on some of my online “autism mom communities” on the issue,  I spotted some information that I thought I’d share.  A post mentioned the Stanfield VideoModeling series.  I don’t know anyone who has used it first-hand, but it appears to be an awesome DVD series to teach children the differences in relationships, appropriate and inappropriate physical touches, etc.   The catch – and it’s a big one – it’s $700.  Sigh.  Well, I’m going to ask around to see if any therapists in the area have the series and offer a training class or would loan it out.  Worse case scenario, maybe a pack of moms can join in together and buy it.

I’d love to hear about any other training programs out there, or any other suggestions!

The second issue is something all special needs parents worry about to one degree or another.  What is really going on inside my child’s school?  I’m not talking about sexual abuse here.  I’m talking about whether our children are being treated with respect, dignity and compassion.   And secondarily, is the IEP even being followed?

All parents worry about their children to some degree.  But when your child doesn’t have the language skills to retell a simple story, your anxiety can go through the roof.

There are times when I’ve driven myself crazy wondering how things are “really” going at school.  Don’t get me wrong… I think most teachers who choose to work directly with special needs children are true angels on this earth.  Yet, stories like the one that came to light this week on the “Today Show” are a wake-up call that there are some wackos among the angels.  Its our job as special needs parents to sort it all out.

So, my motto in all of this is to simply trust your gut.  If something feels wrong, it probably is.  If your child is freaking out about school unexpectedly, something is not right.  Get to the bottom of it, and don’t let teachers or the administration brush it under the rug.

Volunteer in your child’s class.  Join them at lunch.  Ask other parents to be on the look-out for how your child is being treated when you aren’t around.  Send in your therapists to do an independent evaluation.  Just send the school a signal that you are involved, aware and will be watching closely.

The parents in the “Today Show” segment trusted their gut that something wasn’t right.  Thank God they were unrelenting in their pursuit of the truth.

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 started a movement for us to each reach out, connect, help and love one another.  She’s asked those who have a little extra this holiday season to help another;  those who could use some help, to ask for it through her blog.

The results have been nothing short of miraculous.  And it got me thinking too.

Sometimes as a parent of a special needs child, it’s easy for my world to become very small.  I’m laser focused on the needs of MY child –  our schedule, therapy, and appointments.

Then I hear stories of other families going through the same thing –  often times much worse.

Being an autism parent can be a lonely business. So, let’s be there for each other. Let’s connect, share, build a community and help each other out.

I know, first hand, that there are lots of families out there with children either on the autism spectrum or with other special needs who could really use a hand.  I know that it can be emotionally and financially draining for families.  A few of them have reached out on the momastery blog expressing their needs.

Over the years, I’ve accumulated lots of stuff –  stuff that I thought was useful for therapy; stuff that fell flat; stuff that was useful for a moment, but Carson’s now beyond.

I bet lots of you have this kind of stuff too.  It’s so challenging finding that toy or tool that really connects with our children.  Right now, we’re pretty much stuck on all-things Mario.  (Yes, Carson was Mario for Halloween!  Last year he was Luigi, so at least we’re moving on!)

Are you struggling?  Could you use a little help for your child?  Is there a toy or therapy tool that you think would make all the difference?  Do you have stuff that you no longer need, that might be helpful to someone else?

Post it here and let’s see if we can get some families connected.   Let’s spread the word!

I’ll start.  I have some great “early learner” books teaching colors, shapes and numbers.  I also have some Discovery Toys tools for teaching sequencing, patterns and early writing skills.   If you could use them, post a comment or send me an email at Heather@theautismmom.com, and I’ll get them to you.  No questions, no strings attached.