Clarity of purpose and ukuleles

Do some decisions come easily to you?  Do you see the world in black and white?  I've often said that I tend to see the world in shades of grey.  Maybe that's because I'm a middle child.  I don't know. 

We often talk about how our kids interpret the world so literally and how that often translates into a clarity of purpose.  Granted, that can be a real hindrance at times when they need to be flexible but I think it can also serve them so well.  I'm jealous often of that singular purpose particularly when I'm faced with a tough decision like chosing my clothes in the morning.  This singular purpose has worked for war heroes, presidents, and CEO's.  I love it, though, when my son has such a clear vision of something.  That makes him CEO material in my book.

About 2 weeks back it was apparent what he wanted for his birthday.  We posed the question and without hesitation he answered "a ukulele".  My wife and I looked at each other grinning and shook our heads.  You gotta love it. 

Check out these clips.  Sorry in advance for the background noise.  It was an 8 year old's birthday party though so what can you expect...

As you can see from the video, he knew exactly what he wanted.  He was also interested and willing to share it with his friend Madi.  That's icing on the cake (birthday pun intended).

Let's see if his desire now translates into a budding musical talent.  I suspect it will.  Good thing he didn't want a tuba.

Ah socially awkward moments. "Motor boat" anyone?

Remember the comedy series from about ten years ago called 'Kids Say the Darnest Things'?  Bill Cosby hosted it and it was modeled after Art Linkletter's show back in the 50's and 60's.  It was funny.  Everyone loves a 4 year old that "connects the dots" in a new and unique way or simply tells it like it is.  Shoot, half of my Facebook updates are the things that my kids say to me.  My favorite still remains the day that my 5 year old (now almost 10) had an epiphany from the back seat as we were driving along saying "Hey Dad, I can read my own mind!"  "Congrats", I thought, "you're sentient".  Sweet.  Just 2 weeks back I asked my 6 year old Torin what he wanted to be when he grew up.  Without hesitation he stated "a zipper."  Duh, I thought.  Who wouldn't want to be a zipper?  Tough to make a living as a zipper though.  Come to think of it, I should refer him to my blog entry from a few weeks back about my son needing a good career counselor.

Of course parents with kids on the spectrum are always wanting our kids to talk.  In fact, we look for any way to hear their voice.  I often wonder what connections Mitchell is making.  We don't hear much.  That's beginning to change but it has taken soooo long.  Thank goodness for the intensive therapy and the autism waiver funds that were made available to us.  I also have 2 nuerotypical sons that keep my bucket full of good one liners.  I thank my lucky starts for that.   But as my mom used to say "be careful what you ask for" because their voice doesn't always show up at the right time.  Ain't that the truth.

Just the facts ma'am

The trick is learning how to get through those awkward moments and even celebrate them.  Granted, I wasn't celebrating with the ~50 year old female clerk at the department store when my son Mitchell clearly stated "she has a mustache".  It didn't help he pointed at her while he said it either. That left nothing to doubt as to whom he was referring to.  She did have a mustache.  I could see the thought process on the others around us.  Mitchel has always been 'just facts'.  Joe Friday would be proud.  Although I was embarassed, I couldn't help but be glad that I was hearing his voice.  The thought also occured to me that there is probably a sizable market for low priced facial hair bleach.
 
Social nuance is tough for lots of people irrespective of whether they're on the autism spectrum.  I travel a good bit for my job and I often need to just swallow hard and jump in to situations with prospects or clients.  How many people do you know that are terrible with names?  Mine is Paul by the way...

It's not just thinking about the speaking aspects of social interactions.  What about the "doing" part?  Actions speak louder than words don't they?  I must admit that there are times when I wish I had the proverbial "sheppards hook" to pull him out of situations.  It isn't uncommon for my son to walk down the aisle at the grocery store and touch all the glass bottles.  That's bothersome enough because I don't want to pay for 20 jars of pickles.  It gives him the stimulus he needs.  It's a bit more problematic, though, when there is a lady pondering the dozen pickle options only to have my son walk by and run his hand along her back side and keep right on going.  "Sorry about that" I sheepishly say.  We bust out of aisle 7.  Funny thing is, pickles tastes better now and I can't help laughing when I eat one. 

While in the intensive therapy program, we focused a good bit on greetings and initial engagement with friends and strangers.  We made progress.  But, there is room for improvement.  As a word of warning, woman need to be on their A game when they enter the Braun house.  My son doesn't hesitate to hug and he's now of a height that his face lands right in your chest.  On multiple occasions he's hugged woman and gotten a little too gregarious.  If it's happened to you, you know what I mean.  The infamous "motor boat". Sorry, no video clip on You Tube for that.

What's so awesome about this is that my son has helped me empathize with the situations of others.  I'm more patient now with other people's children, especially in public.  That is a true gift that autism has given me.  It's made me a better person.  It has also helped me learn to laugh off some of the crazy situations we find ourselves in.  I've learned to loosen up a bit (my wife we argue I didn't necessarily need to loosen up any more).  Either way, his view of the world and how he interacts with it is unique to him.  I love it.  He makes me smile.

The iPhone & iPad - Great tools for autism spectrum disorders but I want even more

My boys love technology.  Come to think of it, don't all kids?  If it isn't XBox and Playstation, it's Wii and Nintendo.  Around here it seems as if getting a Nintendo DS is a right of passage for each youngster. I hear parents talk about their child getting their Nintendo DS like a first tooth, a bar mitzvah, or a driver's license.  "We had to really hold Jimmy off on getting his DS".  Keep in mind that I'm living in a glass house here.  I've got three boys and just succumbed to buying one for my 6 year old on his birthday.  That child will be a lobbyist some day.  Me buying one is no surprise though given that we tend to buy toys in triplicate for crying out loud.  I've found it leads to less arguing.  That being said, we do "manage screen time" pretty agressively.  You have to or they become monsters.  Maybe that's why I'm grumpy at work all the time...  Too much screen time.

I'm trying to find ways for my son to utilize technology in a positive manner.  I am confident we have a great solution available to us in the iPhone and iPad.

The local autism community here in Madison, WI and the Internet at large (i.e., Twitter, etc.) are buzzing with information about how tools like the iTouch, iPhone and iPad can make a real difference for our kids.  As an information technology professional and an iPhone user, I've been thinking a lot about it as well. I've done a ton of reading up on what others are doing and saying (kudos to those of you who've taken time to post content on the topic such as Shannon Des Roches Rosas blog entry The iPad: a Near Miracle for my Son With Autism and Ashley Harrel's article in the San Francisco Weekly titled iHelp for Autism.  I've also been asking around my contacts here in town, watching Twitter for weeks now to get a sense of personal and professional perspectives, and planning an approah that will work for my son. 

Several aspects of this technology are getting the lion's share of the focus in the autism community; namely augmentative and alternative communication (AAC) apps like Proloquo2Go (a $189.99 AAC app by AssistiveWare), scheduling apps such as First Then Visual Schedule ($9.99 schedule maker by Good Karma Applications), and social story making apps like Stories2Learn (a $13.99 app by MDR).  These are all good applications that I think belong in the standard bag of tricks for anyone utilizing this technology.  However, in my humble opinion they fall short for my son and I suspect for many of your kids.  There are a couple of key tenants that I believe are needed in the marketplace.  If you're a developer, please take heed.

Personalization
Each of our children on the autism spectrum is so different.  Autism manifests itself in so many ways.  That's why they call it a spectrum right?  We need applications that can be personalized to fit our kids.  We need to make them our own.  To really help, apps must allow us to tweak the setup, include photos of our kids and address the particular nuance of their issues.  For example, social stories and video modelling tools need to be about our kid with photos/videos of them. 

Creative
My son is captured and stays engaged with creativity.  During our 3 years of intensive therapy thanks to the autism waiver funds, our therapists worked hard to engage him in creative, surprising ways.  I learned a lot from participating in that process.  It has made me a better dad.  You can argue that technology doesn't get any more creative than the iPad.  In many cases you're right.  What I'd like to see is more applications that leverage the platform of the iPad but target common struggles that people on the autism spectrum deal with.  My boys love CrazyFace.  They get to manipulate the monster's faces with their own voice.  Take a look at my son Mitchell and his 2 brothers as they play with it.  It's on YouTube. There is some good stuff happening here.

Multi-Player
Probably the most important for my family and my son is the ability for more than one person to play at the same time.  In the iPad world, that's called multiplayer.  We spent a ton of $ on therapy to promote turn taking, initiating and continuing contact with peers, and sustaining quality interactions with peers.  This is getting harder as my son gets older and kid's play gets more sophisticated.  We need to give him apps that use the great abilities of the iPad to facilitate interactions with peers.  Unfortunately, the vast majority of the multi-player apps that are available are either shoot-em-up games or sports.  And you know how much our kids love sports...  Also, they way I look at it, they get bombarded with enough imagery of weapons and "bad guys" in cartoons and TV.  We need something more.

So what should we do?

I do understand that this form factor, tool set and capabilities are still very young.  I guess that's what is so exciting.  The next generation is due out in the spring of 2011 and it will probably offer things like picture in picture (front facing and user-facing cameras like what you see on the new iPhone)  Competitors will be releasing slates (HP, Toshiba, etc.) in the next 6-12 months to rival what Apple has with the iPad.  I suspect this will be much like phone makers are doing now to compete against the iPhone.  My mindset at the moment is to just jump in.  Let's keep asking for what we need, and when it isn't available, build it ourselves.   That's where we're headed.  I'm off to purchase an iPad.

Any good career counselors out there for a 7 year old?

We love movies at the Braun house.  As "free TV" people (i.e., no cable, no dish, etc.) we are inclined to rent flicks on a pretty regular basis.  In the past, Netflix was our go to and the reservations were mostly for movies that my wife and I wanted to see.  We had a sizable stash of kid's movies that we'd purchased and we'd just work them through a rotation.  That's changed of late as we've been renting films for the kids as well.  Either way, my kids love movies.  Of course we have to work hard on getting them to watch films with humans in them.  Animation is where it's at apparently...

So many of our kids on the spectrum live vicariously through film.  But when I really think about it, who doesn't?  I don't know about you but I wanted to be Rocky Balboa back in the early 80's.  Adrian!   I connect some of my favorite songs with movies too.  I may be warped, though, given my formative years were in the hayday of music videos aka MTV, VH1, etc.  I digress.  Our kids can be good at taking a love of movies even further.  We've probably all encountered (or have a child for that matter) that utilizes film and TV as their voice.  Often, they use movies and TV quotes to make a point.  That doesn't seem like a big deal until my son would say to me "Frankly my dear, I don't give a damn."  OK, that didn't happen, but it could have.

This intense focus on movies and utilizing them as their voice can be taken too far.  Right now I can hear myself saying "Mitchell, it's time to stop talking about the movie and eat your dinner." or "Mitchell, are you talking about a character in a move?". 

My son often extends the movie character he's most recently smitten with to his career aspirations (which is where the title in this entry comes from).  If I had a nickle for every time I heard "I wish I could be a [insert movie character]." I'd be a rich man.  I guess I should be proud that he's thinking about what he should be when he grows up.  Heck, I didn't get around to that until I was well into college.  His career goal can get a bit goofy at times though when he says things like "I wish I could be a race car" or "I wish I could be a space monster". 

But, most often he is spot on when he uses movies to drive his career goals.  He is a huge project maker and recently built a rocket out of paper cups and duct paper (see photo).  Watch out NASA.  That led to several comments about wishing he could be an astronaut.  He saw a magician on a show and is now trying to make salt shakers disappear.  A trip to the Circus Museum in Baraboo this summer led to a strong focus on juggling (just 2 bean bags so far).  Luckily, he's expressed no interest in being a clown.  I hate clowns. 

Movies and TV enrich his life.  Granted, it needs to be in the right amounts and at the right times, but it really does help him relate to the world.  We use it to our advantage too.  What we need to continue to focus on is strengthening his interest and ability in tieing others into his interest.  I often whisper in his ear, "why don't you ask Jimmy what his favorite movie is?"  We need to continue to help him connect that passion and interest with those around him.  Then we'll all be on the right track.

WYSIWYG - autism at it's finest

I think they're playing...

Man, I love all 3 of my boys.  There are days, certainly, when you want to call the respite provider and see if he/she can pull off a full weekend of taking care of them, but each one of them is awesome in their own ways.  Special talents and skills, great perspectives, their own sense of humor, etc.  I can't imagine life without any of them.  You know the drill.  But sons #1 and #3 are at each other often like Robert Conrad in the old battery commecial saying "Go ahead, I dare you to knock that off."  Kid each other's chair in the car, touching each other's toys and generally 'poking the bear'.  It makes me wonder how my mom survived raising 5 boys with a girl on each end.  Yikes. 

One of the things I love about Mitchell (7 year old on the spectrum) is that he is the personification of what-you-see-is-what-you-get (WYSIWYG).  Isn't that what we all want in a friend, a spouse, or a work mate?  Granted, he has bad days just like you and me but he is often very predictable in his views, mindset, and focus.  His lack of interest in engaging with others at times often lends itself to him not making trouble.  One of his new sayings is "I just want to be alone." There are many situations where I find myself thinking "why can't you two behave like your brother".  I don't recall hearing in the autism community comments about our kids being models for social behavior.  How about that for a twist?

Mitchell at the waterpark - pure joy

Of course there are times when it tugs at your heart.  For example, I know that there is a good chance he'll give me a barely perceptible greeting when I return from a 3 day business trip and enter the house with excitement.  Luckily, those years of intensive therapy are paying off in that he'll reference off his brothers and if they come running and screaming "Daddy!" and give me a hug, he'll do the same.  Mimicry is a good thing to build a base of behavior.


I think we can all do better to offer our families, friends, and co-workers a predictable experience.  That's what builds connections.  I thank my lucky stars that he's go that down pat. 


Now we need to work on spontaneity...