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IMFAR Part 2

Once Alex was done interviewing , we walked back to grab some coffee.  As we walked around this part of the conference, I felt like I was in Disneyland.  I met a man that invented a vest that works similarly to Temple Grandin’s Hug Machine, I came across fMRI’s and  fancy EEG’s, but what stood out most to me was the level of comfort to just be.  This conference was filled with people who ‘got it’ whether on the spectrum or not.  It was so beautiful to watch, and I couldn’t help but to fantasize about a world like that.  A world that doesn’t notice the difference but does notice all of the amazing things inside the person.  Speaking of amazing things, back to the story. 

Alex and Noah needed to edit some video and after Susan, Adam and I found some food we headed over to the video room to join them.  Susan and I sat down and talked while the guys were intently focused on editing.  After a while I walked over and checked out some of the videos and couldn’t help but gush about how professional it all was, especially on the “G-string budget”

Did I mention that Alex has a fantastic sense of humor?!?!

He does.

All of the guys did.

It was getting later in the morning and I had to get home, but REALLY didn’t want to leave.  I gave myself another hour and I am glad I did. Susan and I met a woman with four children (one or more on the spectrum) getting her doctorate.  I have no clue how she is managing it, but she is and I think that it is fantastic.  I met a young man (in his teens)  who had won a trip to the conference and he was absolutely charming.  I also met a wonderful woman from Autism Speaks, please forgive me for not knowing everyone’s name.  I was so doped up on cold medicine that morning that I am surprised I remember half of what happened. (a week later my cold turned into pneumonia…blah)  Then the next thing I knew John Elder Robison walked in.

Seriously!!! 

He and Alex discussed the conference and what exactly Alex had gotten on video that morning.  One of my favorite parts, was when John told Alex, Adam and Noah how proud he was of them. 

I just wanted to hug them all!

But I restrained myself….LOL

I did watch John give the guys this amazing lesson on microphone frequencies and how fast sound traveled.  It was amazing to watch all of their brilliant minds at work. 

Simply amazing. 

I did everything I could not to cry as I thought about all of the challenges associated with autism that our children face that can sometimes cloud how incredible their minds are.  But I was also hopeful watching the four of them working together (some on the spectrum and some not.)  It was a great dynamic to witness. I did get a chance to talk to John and I thanked him for writing “Look Me In The Eye” and also explained that it was my first peek into what Diego’s world might look like.  He was fantastic about it as I’m sure that I was talking way too fast 🙂

Susan and I spent some more time talking, she is doing amazing things for people on the spectrum transitioning out of high school and into college.  When it was time for me to leave, I was bursting with love and hope.  I got to see and hear that the hard times do get better. 

The biggest thing that stood out to me was that I felt like I was with “my people”.  I never had to explain what the acronyms I was using meant, or give my quick  break down on autism.

Everyone there just knew.  It was great!

I am so thankful to Susan, Alex, Adam, Noah, John, and every other person I met for such a life changing experience.

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IMFAR Part 1

The IMFAR Conference was held in San Diego a few weeks ago.  Susan, who blogs over at Taking The Awe Out of Autism ,wrote to me on FB and said she was coming down to attend the conference and we arranged to meet up for drinks.    There are so many women that blog that I have developed friendships with and each one of them is amazing, the great thing about the internet is that it doesn’t matter how far you are from each other.  There is still this amazing “autism mom” connection that we all seem to have.  With that being said most of them live pretty far from where I am and I was super excited because I would actually get to meet a woman I admired so much in person!  We arranged to meet up that Friday night for drinks.  Friday comes and of course it is the day from hell! Work was a nightmare, then after work I had to shoot to D’s new elementary school to observe the special day class (which deserves an entirely separate blog), and then race to pick up the boys (on opposite ends of town) to get home in time to meet with the behaviorist to finish D’s evaluation.  On top of everything else I felt like I was getting sick. 7 o’clock  rolls around and Diego is at the tail end of an awful day, I wasn’t too concerned because my sister was coming to watch the boys and if anything makes D happy, it is his Titi.  My sister showed up and Diego was still struggling, bedtime had been particularly rough. My head was pounding and D’s yelling and screaming just made the evening that much worse.  I made the decision to text message Susan and ask to reschedule, I just couldn’t make it.  We ended up deciding on breakfast the next morning, I was so happy that it worked out because I had really been looking forward to seeing her.  Saturday morning came and I dropped off both kids with family and headed down to the hotel to meet Susan for breakfast.  I had no clue she was staying at the actual hotel that was hosting some of the IMFAR conference.  We met down in the lobby and I felt like I had known her forever, she is such a lovely person.  As we were walking upstairs she mentioned something about “meeting up with Alex”, at that point my mind raced back to a text message from her on Friday that said “Alex and John may come too”, I didn’t give it much thought at the time because things were so nuts.  But when she mentioned it while walking upstairs I started to wonder who Alex was. 

Because it sure sounded like should have known. 🙂

When we got upstairs I was intriduced to Adam and all three of us grabbed some food from the continental breakfast area.  Adam and Susan were discussing ALex’s wherabouts and then it hit me! Susan and Adam were referring  Alex Plank, the young gentleman that runs Wrong Planet!  Wrong Planet is an amazing web community of people with neurological differences. 

WOW! 

LOL…Yeah I said WOW!!  I was really excited to meet him!  Before I go further let me explain something, when D was first diagnosed I was scouring the internet for hope, I desperately needed to know that another person like my child grew up to be happy and successful.  I found Alex Plank and John Elder Robison.  These two men’s stories were the first glimmers of hope during an incredibly dark time.  So to know that I would be meeting one of them in person was so exciting! 

But I kept my cool 🙂

We walked over to the an empty hotel room that was being used as a video room.   Kind of like a headquarters for  Alex,Noah and Adam while they were filming coverage of the conference for Autism Speaks. When we walked into the room, Alex and Noah were very busy gathering this cord and that mic, so I just tried to stay out of the way.  Susan introduced me to Alex and Noah and we all said hello and then it was back to business.  Alex was interviewing a young woman about her research with autism phenotypes and it was time to go meet with her.  Susan, Adam and I followed Alex and Noah, while Alex was interviewing the young woman the rest of us walked off to look at all of the amazing research that is being done to help our children and chat.  I was floored to see the enormous amount of science and dedication going into helping everyone  better understand poeple on the spectrum.  Seeing it all  gave me so much hope.  Susan gave me some amazing advice and we shared stories.  Adam mentioned that it was interesting to hear the mother’s side of autism.  We smiled and looked at each other, we are in the trenches every day, we don’t know anything else.  

I have so much more to write but it is too much to read or write in one sitting, so I am going to use Jess’ great idea of breaking this story up a bit!!  Stay tuned for part two of  my amazing Saturday morning experience!