Monthly Archives: September 2013

Conference Time

Let’s face it – much of the time, people go to professional conferences to see old friends and drink beer, right?  That’s the reason I go to music conferences!  But last week I actually went to a professional conference in the hopes that I would learn something.  (Crazy, I know!)  And I wasn’t disappointed.

Several months ago, I saw that there was going to be a Future Horizons Autism Conference in Richmond, Virginia, and that Dr. Temple Grandin was going to be the keynote speaker.  If you are reading this blog (and have NOT been living under a rock for the last few years) then you probably already know who Temple Grandin is.  But just in case you don’t, she is the first person with autism to become an accomplished professional, and to become famous because of it.  She has a PhD in animal science and is a professor at Colorado State University.She is also a bestselling author, autistic activist, and consultant to the livestock industry on animal behavior.  In 2010, HBO made a movie about her life starring Claire Danes.  The movie is very well-done, and if you haven’t seen it, you absolutely need to.  And I mean today.

When I realized that Temple Grandin was going to be speaking at a conference a 90 minute drive away from where I live, I knew that I needed to try to go, because hearing her speak might be a once-in-a-lifetime experience.  Thankfully, I had no performances or rehearsals that day, so getting the day off of work was easy.  It probably have been more fun to go with a friend (see paragraph #1 above about going to conferences and hanging out with friends and drinking beer) but I couldn’t find anyone else that was available that day.  So I set my alarm clock for 4:30 am (UGH!!!!) to get in the car by myself and head south on I-95 toward Richmond.

The drive to Richmond was fairly smooth, which is a good thing, since I was barely awake.  Although at one point, a rock flew up and hit the windshield of my minivan, leaving a big crack.  (Here’s hoping the crack doesn’t get any bigger.)  I arrived at the conference almost an hour before it started, which left me both relieved that I didn’t hit much traffic and annoyed that I could have slept a whole hour longer. 

Temple Grandin was the big draw to the conference, but she only spoke for about one-fourth of the day.  The other three-fourths of the day were filled by a speaker named Dr. Jed Baker, who is the director of the Social Skills Training Project, a private organization serving individuals with autism and social communication problems. He also directs social skills training for Millburn Public Schools in New Jersey.  He has authored several books about developing social skills and handling problem behaviors in children with autism.  I was pleasantly surprised by how much practical advice I got from hearing his presentation, and I intend to buy several of his books.  (That I will definitely read.  In my free time.  Ha ha ha ha ha!!!!)  OK, I’ll TRY to find time to read them.  But until I get the chance to read his stuff, I thought I would list here some of the insights that I got from both speakers.

From Dr. Baker:

1) Always have hope.

I have attended a lot of conferences, workshops, and lectures about autism, some that were full of practical advice and some that were not, but I don’t think I’ve ever heard a clinician say this before.  He talked about how important it is to always have hope that you can make a bad situation better by trying new strategies and applying them consistently.  And if one strategy doesn’t work, you can always try another one.  Never lose hope that something will help.  He stressed that high expectations always lead to better outcomes.  This was his first point of the day, and I liked the positive start to the conference.

2) You will not be judged by how you control other people, but by how you control yourself.

Dr. Baker told a story about how embarrassed he was when his own children were acting out in a grocery store, since he is a nationally-known behavior expert!  And this story led him to explain that people generally will not be judging you out in public when your children are having a tantrum or are being bratty.  Oh, there will always be a few jerks out there who may judge you, but the general population is remembering when their own children were that age and are just glad they don’t have to deal with tantrums anymore.  What people will definitely remember, however, is if you lose your cool and get angry.  All kids have tantrums.  So stop worrying about what other people are thinking when your kid flops on the ground screaming in Wal-Mart, and remember to keep calm as you deal with the situation. 

3) Helping someone with social skills can usually be boiled down to one question: What is this person doing too little of, or too much of, to prevent his success in a social situation?

Sometimes I feel overwhelmed by how many things I need to teach my boys.  Have you seen the 2009 movie “Adam” starring Hugh Dancy and Rose Byrne?  (If not, you absolutely need to.  And I mean today.  Unless you STILL haven’t seen the HBO movie about Temple Grandin.  Then see that one today, and watch “Adam” tomorrow.)  “Adam” is about a 29-year-old man with autism and his first attempts at dating.  The movie is very well-written and well-acted, but it left me with horrible knots in my stomach.  When the movie was over, I started to panic about how much I still need to teach my guys about interacting with others, particularly the opposite sex, knowing that so much of the social world will not come naturally to them like it will to everyone around them.  Thinking about teaching social skills the way that Dr. Baker phrased it here makes it seem a lot less overwhelming.

These few points only scratch the surface of all of the great stuff I learned from his presentation.  He gave a lot of good advice about many other topics as well, such as how to motivate children who just aren’t interested in being helped, and also about how to give peer sensitivity training to typical kids who are around children with autism.  But I need to move on to a few of my favorite key points from Dr. Grandin’s presentation:

1) Stretch your kids with autism.

Dr. Grandin said this several times in her presentation, and then said it again during the Q&A session when someone asked her what was the one thing her mother did for her that helped her the most.  “She stretched me.”  Dr. Grandin talked a lot about how her mother pushed her to learn to play turn-taking games as a child, pushed her to learn manners, and pushed her to get a job as a teenager to learn job skills.  It made me happy to hear her say this, because sometimes I wonder if I push my kids a little too hard.  Some autism advocates insist that we parents should accept our kids for who they are and stop trying to make them into something they’re not.  I struggle with this concept every single day – how much should I accept my children for who they are and how much should I push them to be and do more?  If I simply accept them for who they are, how in the world will they develop the skills to create a meaningful life for themselves as adults?  Hearing Dr. Grandin repeatedly say that we need to be stretching our autistic children beyond their comfort zones made me feel like I just might be doing something right as a Mom.

2) Make your kids get a job.

She stressed how important it is to learn job skills.  She strongly encouraged parents to make their kids do something as teenagers – a paper route, dog walking, cleaning, etc. – that will teach them the value of working and how to be a good employee.  She said that she has seen far too many smart and capable 20-year-olds with autism who sit in their parents’ basement all day playing video games because they don’t have any job skills or work experience and never learned how to work.  Since my kids are only 6 and 8, this advice isn’t really relevant – yet!  I will store it away for a few years and find some jobs for them to do when they hit the teenage years.  Won’t they be thrilled? 

3) Develop and encourage shared interests.

Dr. Grandin talked about how much being involved in clubs relating to her interests helped her socially.  For example, she loved horses, and when she was in the barn and around others who loved horses, she wasn’t teased nearly as much as she was during the school day.  This is something I already try to do, and plan to continue to do, with my own kids.  It was nice to hear her say it, though, to again make me feel like I’m doing the right things as a parent.

Mostly what I got out of Dr. Grandin’s presentation was inspiration.  Here is someone who has the same debilitating condition as my children, and look at what she has accomplished!  If she can create a successful and happy life for herself, than so can my guys.  I’m so glad that I go to attend this conference and also that she was willing to take some time to sign books.  I got her to sign my copy of her latest book, “The Autistic Brain,” and also got a picture with her.  It was a very valuable and memorable day, even without friends and beer!


Trying to understand

I know that many who heard the story Thursday of Kelli Stapleton and her autistic daughter Issy will not understand.  I can just hear the thoughts.  “How could someone DO that?  How could someone try to kill their own child?”  I don’t know Kelli or Issy, but I think that I do understand.  And it’s not about love, or parenting, or right and wrong.  I think it’s about depression.

You can read the news story here:

 After SB’s diagnosis, I fell into a fairly deep depression.  (This was not the first time I had dealt with depression, but it was definitely the worst.)  I was pregnant and diagnosed with gestational diabetes that my doctor told me would become permanent.  (It didn’t.)  I worried endlessly about what life held for my 2-year-old son, and was drowning in paperwork and insurance red tape to get him help.  I also worried endlessly about my unborn baby, and whether or not he would have autism as well.  (He does.)  As if all of that wasn’t enough, we also had a cat that was very ill and was vomiting daily.  (Always on the carpet.  Never on the linoleum.)  Eventually we had to put her down.  This also just happened to be the time that we had decided to remodel our kitchen, so my home was under construction and the kitchen was not functional at all.  SB was refusing to eat pretty much everything at this point except for chicken nuggets and Goldfish crackers.  We wanted to encourage him to try new things, but there was nowhere to prepare food, and his behaviors were too turbulent for us to eat in a restaurant at all.  As you can imagine, adding a newborn to the mix really didn’t make life any easier, so things just got even worse after AB was born.  So yeah, it kind of felt like life was kicking me in the ass from all directions.

When it felt like I just couldn’t handle one more minute, I formulated a plan.  Thankfully, my plan was not as violent as Kelli’s.  And also thankfully, I never carried it out.  I was going to pack a bag and leave.  Just go.  I was going to do it when my family was at work/school/daycare, and not tell anyone where I was going.  I was going to move into a hotel, where there would be no children, no autism, no paperwork, no other people at all, minimal furniture, no demands of me, and I would never need to get out of bed.  I went so far as to plan what clothes and toiletries I would pack, which suitcase I would use, and which hotel I would go to, but I never actually packed.  I don’t know why I didn’t do it, but it’s probably because it was not a very practical plan.  I am an enlisted member of the military, so A) I have to show up for work, or I’ll get arrested, and B) I don’t make enough money to actually live in a hotel very long.

The weird thing about depression is that when you are in the middle of it, you can’t see it.  Everything seems so dark, but it also seems right, like this is how life is supposed to be.  And things make sense that really shouldn’t, like leaving my family and moving to a hotel and never coming out of my room.  With the support of my husband, I was able to realize that moving out was not what I needed.  What I actually needed was Prozac to get through the day, Ambien to get through the night, and a good therapist to help me sort everything out. 

There are so many things about having a child with autism that can make a parent sad.  I bet that there is something that makes me sad just about every day.  And yet, the line between sad and depressed is very gray.  If Kelli was so sad about her recent struggles (you can read her last blog post before the incident here: that she was deep in depression, then I can kind of understand why she would make a decision that seemed to make sense to her at the time, but doesn’t make any sense to you or me.  Of course I am not condoning her actions, and I do believe that she needs to be held accountable.  But I can be sympathetic.  And I can also be hopeful that other autism parents get help like I did before things escalate to the unthinkable.