Saturday, January 28, 2012

Autism: A Day with the Experts

We are so lucky to live in Madison.  Not only for quality of life here (yes, even in the winter), but also it is a wonderful place on the cutting edge of Autism research, outreach and information.  And not but 15 minutes from our house is the Waisman Center, UW-Madison.  They do so much for children with disabilities as well as Autism.  This is where Jonathan received his official, medical diagnosis. We also participated in a research study there for language.  Today they, and the Autism Society of Greater Madison, hosted their Eighth Annual "Autism: A Day with the Experts".  And I seized the opportunity to go.  (I mean, 15 minutes from my house, for crying out loud!)

The event was billed "Participants will learn about some of the latest advances in autism research, and will hear firsthand from a panel of experts - individuals diagnosed with ASD and their families."
Here is my quick rundown (and you can check out the event's link above for more info)

- Andrew Alexander, PhD spoke about the brain and reading MRIs, and the research in the differences between typical people and those with ASD.  It looks like there may be some true differences, with high success rates in reading their research of these differences.  There is the potential to use this (the MRI / brain scanning) as a way to assist diagnosing ASD.  However, it seems like much more research needs to be done.

- Leann Smith, PhD, a family researcher, spoke about transitioning together as a family when your child reaches the age of adolescence.  While this scares the living bejeezus out of me (Jonathan in high school?!  Jonathan as a teen?!)  it was very interesting to hear about the levels of stress parents have when parenting children with ASD (higher levels than those with children with any other disability!)  And, how not only does the child need to be serviced, but the whole family is affected and could use support. Also, I learned how little support there is for those who leave the school-system and enter adulthood. 

- Linda Tuchman-Ginsberg, PhD spoke about evidence-based practices, and how they best work with your child.  This means a whole team effort, as well as a full understanding, support and follow-up with teachers following IEPs, clear IEP goals, etc.

- Lastly, there was a panel, which included 2 people with ASD (one a recent high school grad with Asperger's, and the other a 54 year old man, who was diagnosed in his 30s), 2 siblings (one a fifth grader with an older brother with ASD, and a 20 year old with younger brothers with ASD), a Grandmother and a Father.  Lots of great insight, especially coming from those with ASD, who so eloquently spoke from their first person perspective.

Personally, one of the most interesting things about today was looking around the room and seeing what a diverse crowd had attended this event.  And that was more evident at lunch in the interesting people I had the privilege of sharing a table with.  I met an Occupational Therapist who works with many kids with ASD.  A young twenty-something who has a 6 year old brother with ASD, who wanted to learn more so he could better help his sibling, as his parents were doing nothing.  A couple, that lives 2-plus hours away, that have two sons on the spectrum and were just searching for support and research information.  And a gentleman who I think works in nutrition (we discussed food and the gluten-free diet).  In the seminar, I sat next to a woman who is a social worker, servicing more and more children with ASD.  All of us have people with ASD in our lives.  All of us wanted to learn more.  And really, there is still SO MUCH MORE to learn, and discuss.

I'm really glad I took the efforts to go today.  Another example that we really are not alone.  We all share similar journeys.

When I got home, Jonathan had a make-up therapy session.  Since this is not typical in his weekend routine and usually I am not home during therapy time, he really wanted me to be with him.  He would yell, "Mommy, downstairs!"  So I was able to join him and his therapist in the 2 1/2 hours of ABA therapy today.  And while I had plenty of other things to do, I was so glad I was able to be with my boy and watch how much he has improved. I had a blast with him and his therapist.  It was a good refresher for me in my appreciation of all of those that are helping our boy.

Feeling much gratitude for today.  (but I am beat.  ha!)

Sunday, January 22, 2012

Someone is getting very demanding

"Mommy, lay down under tent."
"Basketball on iPad.  Basketball on iPad, please."
"Salami and cheese.  Want salami and cheese, please."
"Want blue Telebtubbies CD.  Number 7."

With new language and words, comes new sentence structure.  And I can't help but laugh that he is, very politely, starting to request and ask for things that I don't expect.

Take "Mommy lay down under tent."  We bought him a little tent for Christmas.  He currently has it up in him room, and is his new favorite sleeping spot.  Who needs a bed?  When I put him down for the night, he comes running and says, "Mommy lay down under tent."  A 5 word sentence! He wants to cuddle!  How am I supposed to say no to that?

One of the funnier requests have revolved around the iPad.  He has discovered the apps store.  And he finds apps that he wants, gets it ready, then turns to me and says, for example, "Thomas and Toby on iPad?"  Or "ABCs on iPad?"  Luckily he does not know my itunes password...yet.  But give it time.  I'm sure he'll figure it out.  Oy, I'm in trouble.  At least 95% of what he wants to buy is educational.  I however said no to the Talking Tom Cat dressed as a pirate.  (we have the regular Tom Cat app.  That will have to do.)

Don't get me wrong.  I LOVE that he is requesting things and telling us what he wants.  Makes all our hard work so worth it.  Seeing results is very gratifying.

Yesterday, Jonathan had the majority of the day together, one on one.  I took him on his first sled ride.  Let's just say it went downhill (pun intended).  Dressed in snow pants, we climbed a monstrous hill in our neighborhood, battling elements and preteens alike.  Jonathan was a champ getting up the hill.  I put the sled down, plopped him in and sat down behind.  We started down the hill, but were going a bit too fast for me, and I was trying to avoid all the people coming back up the hill.  I put my feet out, and the snow just flew up in our face.  Both of us were covered!  When we stopped, I checked on my buddy.  Jonathan had a look of terror on his face.  Not from going down the hill, but from his wet and covered face.  He started moaning a bit and then said, "oh dear!"  He totally got that from listening to his Teletubbies CD, but it was so appropriate, and hilarious.  I think I was a bit ambitious for this, his first sledding trip.  So we left.  I think we'll try again today on the much smaller hill in our backyard. 

For now, we enjoy our lazy Sunday morning.  I'm typing away, while curled up next to me is my buddy, playing on his ipad. He just said, "Bob the Builder. Can we fix it?"  Good thing we've already purchased that app. 

Saturday, January 14, 2012

The Little Things

So at this very moment Jonathan and I are hanging out at home, waiting for Mommy to come home from a business trip. She left Thursday so for nearly three whole days, it's been our boy and me, and while as always we miss her terribly, this particular trip has been just a tad easier for Jonathan, and as a result, me. Last time, he acted out a bit by refusing to put his jacket on and having an absolutely terrible drop-off at school the one day I drove him there (Jen almost always takes him). And night time was horrendous, and I remember him sleeping naked the first night, refusing to put a pull-up or any pajamas on.

But this time, everything went much better. Of course, the day Jen left on her trip, it was snowing badly here, and I was worried about her flying, but it turned out to be on time and without a hitch. So I felt good about that, and then turned my attention to getting our son to bed. This time it was not a problem as I followed the same routine Mommy does. He fell asleep like an angel this time.

The next morning, I followed the directions to a tee for getting him ready for school. I had instructions on a dialogue and everything, something Jen does with him every morning on the way ("there is the park, who plays in the park?" "Kids play in the park"). No, seriously. I did this, reading from a notebook, while driving on slippery, freshly snow covered roads. We got to school and this time there were no issues whatsoever--no issues with the parking spot, with the drop-off in general, or me leaving. Whew.

Last night we watched Handy Manny before bed as we usually do, and once again bedtime went great--no fuss, and once we got through the standard routine that includes him getting naked and me dressing him in his pajamas again, he fell asleep shortly after that. Whew, again.

This morning, I wrote on his dry erase calendar--something Jen only does with him during the week. I wrote "Trader Joes, Grocery Store, Pepper, and Mommy"....meaning, we would run errands, come home and see Pepper, and then wait for Mommy to arrive home. And guess what? He was an angel. I kept saying, "What is next?" and he would tell me, and then we got home and had some lunch. I thought about running more errands or doing something else with him, but it's always risky when he's already off routine with Mom not being home. So we just hung out this afternoon, and watched Elmo and Caillou holiday movies. And Jonathan could not have been happier, coming up to me multiple times and just hugging me and smiling. That made me realize that sometimes it really is the little things that make kids like Jonathan happy, and that makes me happy too.

Of course, we'll be happiest when Mom gets home, in just a few more hours!

Sunday, January 8, 2012

Ode to a Lightpole

Some may have heard me mention "Lightpole" before.
Lightpole is actually an electrical or utility pole that is at the entrance of our neighborhood, and right across from Jonathan's preschool.  It was one of the first things he would point out to us when he started talking last year, which was a pretty big step.

I recently mentioned in a status update the he discovered Google maps on the iPad.  And with that, he has been using the street view from our house to the school.  He's not really going to see the school.  He's going to see Lightpole.  And he will keep it on the screen for as long as possible.

Meet "Lightpole"

He has even branched out to "Signs."  I thought signs meant the street signs on the busier road near our neighborhood.  But thanks to google maps, Jonathan has showen me that "signs" to him are the series of utility poles down the busy street.

Sometimes the satellite goes out or something on google maps.  And Jonathan get SOOOO upset.  He wants to see Lightpole and Signs, dammit!  So, on this fine Sunday afternoon, I packed him up in the car for our own, in real time, street view.  He is doing in happy dance in the picture below.

Happy Dance at the Lightpole.  Does that make him a pole dancer?

Lightpole in it's full majesty.    

So it made me think.  How many times do you drive by things, stores, signs, utility poles, etc and not think about it?  On your way to work or the store?  A million times!  And really, you have no idea what one little, meaningless thing to you could mean so much more to another.  Reminds you to stop and smell the roses...or in this case, stop and look at lightpoles.

I don't know what it means really.  I don't understand why the lightpole.  I don't have answers.  I just know that Lightpole, like blue car, like yellow milk, bring him comfort.  And that, I cannot question.

Oh, and too cute not to share...he took his Spaceship Clock to school with him last week.  Not plugged in or anything.  But he was so sweet holding his spaceship.  It was his lovey for the day.  Had to share the pic.

Kinda looks like Wall-E.  But it's not.

Saturday, January 7, 2012

The Network, and I ain't talking about Facebook

"So, do you have a support network?"
"How are YOU doing?"

These questions used to turn me into a pool of  a blubbery Oprah would say, my ugly cry.  I couldn't stop.  Huge tears rolling down my cheek, not being able to breath...that kind of cry.

I have gotten better and not cried so passionately to these questions.  One reason being, is I'm getting help.  I'm not ashamed to say that I'm "talking to someone."  And that's for me.  And it helps. 
But I've been thinking about it more.  The support network thing.

In 2006, before Jonathan, I had an ectopic pregnancy.  It was my first pregnancy, and it ended in a devastating way...being rushed into emergency surgery.  In the days after, I thought I would find a support network through websites and chat rooms.  I tried it for a while, but it all felt so fake.  I never connected with these other women.  I didn't want to share with them, and it all took so much time.  It didn't make me feel better at all.

So now, in search of a support network, I don't think I want to go the "chat room" route.  Nor do I want to do anything that makes me feel unconnected and fake. I know of two different support groups, sponsored by two different Autism organization, that both meet once a month.  I have yet to go to one.  And oddly enough, both are on Tuesday nights, which are the same nights as my weekly team meetings with Jonathan's therapists. 

I've been coming across some other really great blogs written by Autism Moms, like me.  And I've been laughing and crying along with their journeys too.  That brings me comfort.  A lot of comfort. Finding a lot of similarities in situations and frustrations.

One of my resolutions for 2012 is to "be what is missing."  Meaning, if there is something missing in my life, I need to create it.  I'm missing a support network...other families, just like us.  And I know they are out there.  I need to create it.  I need to step out of my shell (and for those that know me well, the thought that I have a shell is pretty amusing).  But I mean...we've been working so hard on getting him help...we're in our new routine...I think it's time for more. To explore more, to learn more, to be more.

When we got our diagnosis, I went to an Autism 101 class.  And the one thing I took away from it was to not overwhelm yourself.  One thing at a time.

I think it's time for the next thing.
I'm kind of excited about it too.