My Autism Insights

I rarely post more than once a day, but I just came across this ABC News story about very happy couple, both with autism, and I couldn’t pass up sharing it.

Video

Enjoy!

Mia Hysteria shares her inspirational, humorous and sometimes heart wrenching journey of raising 3 young children, one with special needs, while managing a life of chaos, in her blog: General Hysteria .  Mia has been blogging on General Hysteria since September 5, 2008 about her son, Ben (1), her daughter, Violet (2) and her oldest son, Alex (6).  Alex has cerebral palsy, autism, sensory processing disorder, developmental delays, epilepsy, and ADHD.  Mia is a mother, wife, blogger, and practicing writer.  Candid about her current and pre-insanity-brought-about-by-children life experiences, Mia’s writings will leave you shocked, laughing, and reminiscing. On a laptop, in a cul-de-sac, somewhere in Colorado, she is single-handedly attempting to share her stories, thoughts, frustrations and elations so that no person feels isolated, forgotten or unworthy of their own journey.

He is my first born.  I can still recall doing as many things as possible with him.  I would cut open yard size garbage bags, carefully taping them to the floor before inviting him to sling paint all around.  He wasn’t as interested.  Or placing him with me in the kitchen while I pureed his food rather than buying jar food, talking to him all the while – giving him words to all the crazy things his mom was doing, thinking that would all make me a better mom and him the best raised little man in the world.  I’m far from those ideas these days.

Though I gave up the pureeing of food, I have not wanted to stop the art projects, but those have been hard for us.  The projects that make you feel as though you’re showing your delicately developing child all that the world has to offer; giving your child things to feel, experiment with, explore.  For various reasons, they’ve never worked out for us.  An unfortunate admission from me is years after his diagnosis, and too many times of these best of intentioned projects ending in turmoil or not beginning at all, I threw up my hands and stepped away from showing him this world.  I was wrong.

Today, I am back to wanting to show my Angel more of his world through art projects.  Much of this has come from a better understanding of how his mind works, what his limits are, what he is capable of and what he likes.  Alex has cerebral palsy, autistic features, developmental delays, and more; fun activities can take some planning.  Alex doesn’t have a huge attention span, he can paint with assistance, and patience is a consideration.  This, along with a little sister who interjects herself wherever she deems she’s needed, is perfect:

You’ve all seen these, right?  If you haven’t, go check the dollar bin areas at your local Michael’s Craft Store.  This is Alex’s favorite project. The first hurdle we had to get over, which took just a few minutes…the plane is not in one piece.  We had to work through this one time and now he is versed on what to expect.   The fun begins.The way we work it is to take the pieces out of the bag and then choose our paints.  I encourage him to pick more than one shade of blue (his favorite) and if he’s feeling real good about the project, more colors will be chosen.  We distribute the pieces to the appropriate people (remember his sister is ‘helping’).  Alex always gets the wings.  We paint.

Why this works so great for him is that by the time we need to think about letting it dry so we can paint the reverse side, his attention has been caught by something else…or dinner is ready, or my one year old is pulling at my leg…we can leave the project for later.

Usually, we paint again the next day to its finish.  I glue it at night while he sleeps and in the morning, he’s greeted with a new present, yet another airplane, that he has pride in knowing he made (with his sister’s help).  It’s special for him.  It’s what he loves.  It’s blue.  I showed him another piece of this world.  And he molded this world to fit into his.

What about you?  Are you able to do project activities?  Are there projects that work for you?

This will be a non-autism related post…sort of.  I’ve just spent the evening watching the first African-American president become elected.  And I feel hopeful.  I feel hopeful that my bi-racial children will now grow up among a different world view, that there is now an image of success at a whole different level than I’d ever imagined.  I feel hopeful that no matter what my son’s differences, it has been proven in a very visceral way for me that the sky is truly the limit for him, for my daughter, for generations to come.

I’m rambling a little because I’m, honestly, floored.   No matter what happens now, beyond political alliance or color of skin, the majority of the people of this nation have stood up and looked beyond difference toward our best hope to achieve the common good.

So in that way, maybe this is a post about autism, about succeeding regardless of difference.  Maybe it is a post about possibility, and vision, and hope.  Yes, we can.  I will look at my son with the renewed belief that yes, he can too.

image from clkr.com

Yesterday, after an hour break from getting flu shots, Gus started on his first sports team.  We showed up early to meet the coach and get his Gus’s uniform.  I felt so bad for him wearing shorts when it was only about 40 degrees outside.  It warmed up quickly, thankfully.  His uniform is red with black shorts - he looked adorable and it was very evident how good he felt about himself.

The way this special needs program works is that older kids in the soccer club volunteer a Saturday to work with the special needs group, which includes individuals of all ages.  Each player gets a mentor to shadow him (or her) throughout the practice.  This was a relief because I was worried about how they’d keep Gus on the right field.

Gus’s mentor was named T. who proved to be a very nice and patient kid.  It was a sort of practice and game at the same time.  The more experienced special needs players go to one field where they (with their mentors) play an actual game.  The less experienced players go with the coach to learn specific skills interspersed with short game-like conditions.

The mentors were very impressive in their interactions with the team, and I saw a great deal of respect and patience at this practice from everyone involved, which really put me at ease.  We’ve had experiences when someone said they could work with an autistic child and they really had no clue.  But yesterday, even when one little boy kept taking his socks off (sensory defensiveness?) no one got ruffled.  I think we’ve found a good environment for Gus.  He wandered away from their field a few times and sat on the ball to rest a couple of times, but T. was great about gently getting him back on task.

Admittedly, I was a little skeptical about how Gus would do.  His ball skills have always been very weak, but he’s also very good on his feet, so I thought he had a good shot at picking up the game.  He did fantastic!  He was able to dribble the ball almost from the beginning and I noticed that they were teaching him a little bit about passing when the other team is in your way.  The coach taught him a little fake-out move and by the end of the practice, he was remembering half of it, more importantly, he was remembering to use it, even if it wasn’t mastered yet.  I’m glad he got on the field and stayed there the whole time.  It was a big success.

One thing that surprised me: he didn’t run as much as I expected.  At home he is constantly zipping through the house, but he was sort of strolling along with the ball.  He’s got a cold, so he may have just been feeling tired from that - we’ll have to wait and see.  I was also pleasantly surprised to see him score a few goals when they practiced goal kicking.

His strategy was funny.  There would be about 10 kids all trying to make goals past 3 goal keepers.  So he would wait until there was a bit of a jam, casually stroll around to the side of the net and then sort of ease the ball in when the keepers were occupied.  He’s always had that sneaky streak (he used to plot to run off as early as age 2) and I think it will serve him well here.

After the game, we went to buy cleats, a ball, and an extra pair of shin guards (of course I bought the wrong size, so I’ll be making a trip back next week).  The team will play until around November and then break until the spring.  So you can look forward to me being a soccer-mom at least until then!

  image from ABC News

For the past few weeks, Gus’s summer-school class has been studying the history of the Olympics and the Beijing Olympics.  So when we told him he could stay up a little late to watch the Opening Ceremonies, he was more excited than I’ve seen him in a long time.  He was too tired to get much further than the drummers at the beginning, but it was still a real ‘moment’ for him.

Fortunately, this morning, NBC aired the parade of countries and the torch runner right around the time Gus got out of bed.  It was good for him to see these Athletes from such an amazingly diverse range of countries and human conditions.  He perked up when the torch entered the stadium; he’d been looking forward to that.  “This is the most exciting part - the torch runner!”  And then when the flame was finally lit, “Wow!  Cool!”

Also moving moment for the both of us was nine-year-old Lin Hao, who not only survived the earthquake in May, but went back to help save some of his classmates.  He walked next to the Chinese Basketball star, a stunning contrast. 

What would I like for Gus to take away from watching these games?  Well, I was struck, watching the parade, by what it must mean for some of these athletes to have made it to this place in their lives.  When you think about some of the war-torn countries that are being represented: Sudan, Iraq, Afghanistan, Croatia; when I look at Dara Torres (I’m rootin’ for you, girl!!) - Olympic swimmer at age 41after such a long retirement; when I look at Lin Hao - survivor and hero….These things give me a sense of what the human spirit can accomplish; there is always hope.  That’s what I want for Gus to take away from this experience of watching the games.  Anything is possible.

 image from Webster’s Online Dictionary 

Not long ago, our family cat passed away, and we’ve been thinking about whether or not to get another pet.  We even touched on the topic of thinking about a therapy dog for Gus.  Only problem is that Gus is still a little afraid of dogs.  The other day I came across an article about a family who uses guinea pigs as a form of pet therapyfor her Asperger’s and ADHD kids.

I wonder if Gus might like one.  I’ve often wondered about kids and smaller creatures, images of squishing and squeezing plague my brain.  It could be worth a shot though, especially since Gus is about as likely to squish a poor guinea pig as he is to bench press…me.  It could be worth a shot.  Does anyone know the average life expectancy for the little critters?

Mothman statue image from Point Pleasant River Museum’s gallery.  Mothman is one of Isaac Law’s favorite monsters. 

The August issue of Real Simple magazine is running an article entitled “Living with Autism.”  It’s a profile piece on the Law family of Baltimore.  Isaac Law is a fifteen years old autistic boy with a passion for monsters, or “fantastical creatures” as he calls them. 

What made this article stand out from dozens of others that I’ve read this week was its honest, yet positive depiction of autism.  Kiely, Isaac’s mom, readily tells about how she cried every day, grieving for her son, after his initial diagnosis.  But she saw, over time, that therapy has helped him a great deal.  Isaac is now in regular classes, two grade levels behind (still - huge kudos to Isaac!), with a one-to-one aide.  He’s got dreams for his future that include living independently and a career, possibly in cryptozoology or futurology or science-fiction writing. 

The Laws, in conjunction with the Kennedy Krieger Institute began IAN - the Interactive Autism Network.  This group matches families with researchers in a host of different studies, and offers information and support to families.

Kiely says, “I look back at the time before his diagnosis and think how self centered my life was.  Then when I knew what was wrong, I grieved for my own dreams.  But in some ways what Isaac and I have now is more beautiful than what I ever imagined.”

Sounds to me like her son has helped her to grow just as much as she’s helped him.  That’s pretty awesome.

 image from cbsnews.com

The other night I heard about a little nine-year-old autistic boy, David Militello, on America’s Got Talent and finally got to watch the video posted on Autism Blogger.  Watching him had me in tears - what an amazing and poised and endearing child!

I remember the first time I saw Gus onstage when he was in Kindergarten.  His school was big on talent shows and his class did a dance to an old-school rap song.  I was totally blown away!  His bus drivers are always telling me about how he entertains them on his long trip by singing. 

I’ve written before about how much he loves music, and he apparently loves to dance as well.  I don’t know that he’ll take it as far as little David, but it’s certainly great to know that it’s possible.  Have a great weekend!