Tag: autism

A reader sent me the link to an NPR interview with Roy Richard Grinker, author of Unstrange Minds:  Remapping the World of Autism.  (Scroll down to Feb 8)  It’s a good listen.  My favorite part is around minute 34 where the family visits France.  How cool are they?  If you’ve been reading my blog, you’ll know that’s a Marineland moment.  I don’t have his book, I’m skipping off to Amazon now to get it. 

When I was first doing research, and reading anything I could find, I stumbled across a book list.  There was a title that stopped me in my tracks.  I never read the book….but the title was enough to adjust my perspective.  WHEN SLOW IS FAST ENOUGH.  Priceless.

When Sam was officially diagnosed at age 3, almost 12 years ago the stats were 1 in 1000 or more.  More prevalent in boys.  Last year statistics changed and the results clocked in at 1 in 166.  Now they are saying 1 in 150.  But what’s a number, really, when it comes to your child?  IT FEELS LIKE YOU ARE THE ONLY ONE.  It could be 1 in a bazillion.  The world stops.  It’s difficult to hear, even though you knew it was coming.  The process of getting a diagnosis can be long, emotionally draining, and yet you already knew what the outcome might be or wouldn’t have sought the help.  We knew there was a difference in Sam before he was six months but I didn’t push for assistance until 9 months.  "Come back after 12 months….he may start talking….you’re comparing him to Peter, who started everything early….every child is different".  12 months.  18 months.  24 months.  I’ll spare you the gorey details.  I can’t even bare to think of those days without feeling rage, and sadness, and emptiness, and yet determination.  I can tell you two things – first, the pain never leaves.  If you reflect on the word, AUTISM, you’ll do your head in.  You’ll sob daily.  It’s important to get over it, or maybe I should say, get past it, because you never really get over it.  Second, it gets easier.  REALLY it does.  I wish, I wish, I wish, that when we were new to this unfamiliar territory, that I had met someone like myself, as I am now.  It might have been easier to move forward faster if I could see ahead a few years.  If I could have met someone with autism, like Sam right now. 

I mean, he is the COOLEST kid.  He is absolutely a joy.  BLESSING.  He fascinates me DAILY.  He has mastered language enough to communicate with us.  To have his needs met.  To be conversational to a degree.  To even make jokes.  It amazes me how far we’ve come.  To think I had to use pictures to talk with him….in conjunction with sign language.  I remember a time when most of his words were echolalic (repeating what you say vs. giving you an answer).  For more than I year I would say "Good Morning Sam" and he would say "Good Morning Sam".  Then I would follow it with "Good Morning Mom" and he would say "Good Morning Mom".  You just were used to it but didn’t give up on patterning for him what he should be saying.  Then one morning….he must have been six, I said "Good Morning Sam", and HE SAID "Good Morning Mom".  I fell to my knees.  Fallon, then 3, knew he got it right.  Peter, then 8, fell to Sam’s feet and hugged his legs.  It was so unexpected.  Such a miracle.  One of many.  MANY.  We recently discovered Sam has a splinter skill, which means he has a talent that is highly functional.  You’ve heard of savants?  Rain Man was one.  Well I wouldn’t call Sam savant, but he can do calendar calculations.  Give him a year, and a date, and he’ll tell you the day.  It could be 1960, or 2010, he’ll know it.  Honestly.  Fascinating.  Trying to figure out right now how to take that skill and turn it to an advantage with learning other things.  Miracle. 

My point for today…..since I could really write so much more….is that if you, or someone you know, has recently learned they are a parent of a 1 in 150, it’s time to get moving!  Early intervention is crucial.  It’s available.  GET PAST THE DIAGNOSIS.  It may even change…you may have gotten mis-labeled.  The important thing is to get help.  If it’s behavior, or language delay, pervasive developmental disorder (a catch-all term), or really is autism, TAKE the help you are offered.  Get enrolled in programs.  Don’t settle.  Ask for more.  Make it happen.  You can’t believe what a pain in the a** I was at the beginning….but I got all kinds of things rolling for our local program that didn’t exist.  Ok, I’m getting wordy.  Let me simplify and say:

Be Constructive ~ Be Creative ~  Be Positive  ~  Be Productive

You will hear you have to be your childs advocate.  They aren’t kidding.  In some communities they are very tuned in with autism and have different programs that are appropriate.  In some communities you may have to get more involved and get them to adapt or adjust programs to meet your childs needs.  Sadly, in some communities the schools are clueless, and you will have a battle on your hands. 

1 in 150.  That’s not such good news.  But Awareness is good.  The fact that the population of children with autism is higher doesn’t necessarily mean there are more and more – it’s partly because we are getting better at recognizing it.  And recognizing it means that schools need to address and assess their programs to educate our very special kids. 

I’m under no delusion that Sam will be cured.  Honestly, I can’t imagine him any other way.  He is what he is – and he brings so much joy to our lives.  I am grateful daily that he has had the best teachers and continues to grow both academically and socially.  I do hope, however, that some day we may be able to prevent more occurances.  And if you have questions, or need to vent, or want to share one of your miracles, write me. 

"Not being able to speak, is the not the same as not having anything to say".

It’s that time of year.  Parking lots are crazy.  Lists are being made.  Things to prepare, things to purchase, people to remember.  I look back over the year and have many fond memories I want to capture with words to go with the pictures I’ve taken.  I scroll down this blog and laugh as I continually change the setting so my entry "It’s a Wonderful Life" won’t fall off the bottom.  Why?  Because I love reading it.  I love re-reading the comments it generated.  I love re-living that moment.  I want to carry in my heart that feeling of pure JOY from the experience itself, followed by the immeasurable gratitude for unexpected gifts, like that day, and those people, who made a difference in our lives. 

Before I let the Sam’s Story drop into the archives, I will share this video….grabbed by my digital camera since I didn’t have my video camera with me that day.  It’s only a snippet, but I know what it is, what it means, and I’m happy for the few seconds I have…..and I’ve finally posted it to YouTube.  Here is Mike, showing Sam to direct Kiska for a trick, and a small view of Kendra, and Sean’s voice.  To them and to Nicholas, THANK YOU.

And while were at it, let’s remember Jason.  You probably saw the news clips about him – a young autistic boy who became the basketball hero.  Here is a newscast that shows his story, and how he made a difference to a family with a young son just diagnosed.  I’m sure there are countless more people who were touched in some way by Jason.  I know I was when I first got a call from a friend’s husband to report on the story which led me to catch it on the news.  I’ll never forget Jason McElwain…..and how cool is this?  The evening after being at Marineland, Sam and I turned on the tv at the hotel and happened to tune into the Kid’s Choice awards just as Jason received an honor.  Click here for more. 

"The best things in life aren’t things".

This Christmas, remember hope and magic don’t have pricetags, they’re priceless.  Give an unexpected gift.

Here’s a terrific video clip that illustrates how we are all different, yet all special in our own way.  This represents all children, all people.  I think it’s an excellent tool for explaining what diversity means.  We can recognize ourselves here, each of us relating to one or more of the animals.  Here’s to teachers who ‘get it’ and help our students realize their potential.   When I need to define what autism means, I think of this clip to help me find the words.

Watch here.  (Click on purple box.)

When I wrote the last post I was eager to share the incredible experience we had with our beloved Orcas and our new friends at Marineland – because when you live with Autism, you tend to be prepared with an exit plan in case things aren’t working…..but I surely wasn’t prepared for what was in store for us that day. Generous souls at work.

Those of you who have visited here, and know my Sam, realize that THIS was indeed a rare, unexpected, and very special event – and are so happy for him, and for me.  Those of you who don’t know us, but have shared your heartfelt comments, have widened our circle of friends.  You’ve moved me and my family. 

MANY THANKS to Ali, who shared my link with her readers.  Like I told her, with a wave a magic wand, and a link on her site, she proved you can MAKE A DIFFERENCE and spread the love.  As many of you said – GIVING of yourself can make such an impact on someone’s life just as the trainers did.  Being IN TUNE with people, that’s the key.  It is SO COOL that we got to share this story with so many people around this globe – and that all of you GOT IT. Tears of happiness here too. 

I wish I had the time to write back to each and every one of you who read this story and offered your sweet responses on this blog and by email.  Please know we have loved reading them and cherish that you took the time to share in our joy.

Love, Sam’s Mom

(EDIT:  Check it out!  Comment #69 is from Nicholas – the young man who set the day in motion…..THANKS NICHOLAS. Big round of applause for you!  Look how many people you touched with your simple gesture of telling Sean, Kendra, and Mike about Sam.  )

Living with AUTISM is a challenge, but it’s wonderful and rewarding.  Many children with Autism thrive on routine.  They depend on it.  Our son Sam is one of those kids.  He sets his mind on how and when things should happen.  Here’s a story where foiled plans became a dream of a lifetime.

Last year we went to Niagara Falls.  We found out that Marineland, an amusement park with exhibits of many mammals, had Orcas.  Our son Sam has loved Killer Whales since he was about a year old.  I mean, HE LOVES THEM.  The walls in his room are covered in posters, and picture calendars, and we have dozens of Orca toys – plastic, plush, large, small, plus magnets, stickers, pillow cases.  AND did I mention books?  Countless books on whales and dolphins, but mostly Orcas.  Free Willy?  He’s a friend we watch nearly every day.  So off we went to Marineland on Thursday, August 16, 2005.

Once in the park we headed straight for Friendship Cove, home of 4 Orcas.  I can’t tell you how excited we all were to watch Sam’s face as he saw, for the first time in his life, a real Killer Whale.  It was a moment to remember, followed by many more that weekend.  LAST year you could purchase tickets to stand with the trainer to feed and pet an Orca.  Yeah, we all did it – more than once.  After a full day of fun with the family at the park Sam and I returned for a second day – 9 hours just standing at the tanks, watching the whales.  Sam was in heaven.  “Goodbye whales, see you next year”.  From the day we departed Canada Sam started talking about returning on Thursday, August 17, 2006.  If you know a child with Autism, you know that you had to talk about the upcoming trip daily, like 20 times a day.

Fast forward to this past August.  Sam was ready, wearing the same shirt as last year so the whales would recognize him.  His routine was working up until we got to Friendship Cove – no more ticket sales for feeding the whales.  Foiled!  The activity was replaced with a new Splash Show.  Sure, the Splash Show was fantastic, fascinating, but I could see the despair and confusion on my sweet boy’s face.   We stayed for two shows, took lots of photos and video, saw the rest of the park, went on rides, and returned to say good bye to the whales.  Sam and I returned again for a second day.  Didn’t take the video camera as I had enough footage, right?  Bad idea.  So we are there, planted into position as we were last year, to spend the day watching the whales swim around their wide open tanks.  You are literally two feet away from these beautiful mammals.  The Splash Show is every hour and half – so people start filling into the area ten minutes before show time, then disperse twenty minutes later, soaking wet, after the show.  The trainers notice we are there, and still there, and again, still there.  We talk with one of the attendants – he asks Sam about the pile of books he’s carrying.  This young man, Nicholas, bless his heart, cued in that Sam is no ordinary child, and tried to keep him engaged in conversation.  One thing was obvious to Nicholas – Sam ADORES the whales.  THEN, just prior to the next Splash Show, the “host” of the event, Sean, came over to talk with Sam.  I could feel myself leaving my body  – you know that kind of moment you have when something REALLY GOOD is happening and time stands still and you can barely speak and the tears flood down your face.  Sean tells Sam – I could really use a helper for the show.  Do you think you could help me?  WHAT DID HE JUST SAY?  Dear God, THANK YOU.  If I could have felt my legs at that moment I would have dropped to my knees.

The show begins.  Mike and Kendra, the whale trainers, introduce themselves to this hysterical mom, with winks and smiles, KNOWING, knowing.  Sean is at the microphone, introduces Sam Ward from NJ…..and Sam, who has memorized this show, mimics the trainers.  He knew what to do.  He knew the act.  They got such a kick out of it.  Sam was not afraid in the least to be in front of a HUGE crowd.  He directed the whales to do their tricks.  NEVER in my wildest dreams did I ever expect that Sam would have the chance of a lifetime.  All credit goes to Nicholas, who had the insight, and Sean, Mike, and Kendra, who had the hearts, to give this special boy a very special day.  Warm hearted thanks to our Marineland friends.  I know they feel rewarded, because you just get that from our Sam. 

Sam stayed behind the barricade with the trainers after the show.  The two whales, mother and daughter, were still floating near the trainer area,  – waiting, watching.  Sam opened his books to show them the Orca pictures.  Page after page.  The whales didn’t swim away.  Sam read to them.  Sam had observed everything they did in their “free time”, and he especially loved when they stuck their tongues out.  So Sam sticks his tongue out at the whales and they mimicked him!  The hour and half between shows flew by and Sam was honorary trainer for one more show.  Imagine my husband’s reaction when he came to pick us up outside the park at the end of the day!  Thank goodness I had my digital camera and could show him and the kids all the proof that we were the luckiest souls on earth that day.  Of course I wish they had been with us, but if they were, would it have all happened like it did?  Maybe.  Maybe not.  And Thursday, August 16, 2007?  You know where I’ll be!