Sesame Street: See Amazing is Amazing!

It’s been almost exactly a year since we received Jake’s ASD diagnosis.  I feel like I have grown and stretched more than I would have thought possible.  I have so many more ideas, so much more patience.  I have so many more conversations about autism.  I think about parenting so differently.  I think about children so differently.  I have examined my heart, my faith, my marriage, my family, my attitudes and my choices.  I have been like the heart that broke, and in doing so, opened up wider than was possible before.  Much wider.

Today I had time to spend checking out Sesame Street’s new autism initiative, See Amazing.  I watched every video.  I cried.  I opened every link, every pdf, every helpful hint.  This is, strangely enough, a wonderful time to be autistic.  Better than ever before.  And by extension, a wonderful time to be parent to one of these incredible children.  There is love in a website.  There is truth in a video.  There is compassion and understanding in strangers’ voices filtering across the internet.

I want to share every one of Sesame Street’s videos.  I want you to watch all of them.  They are short, I promise.  I want everyone to watch them.  I am so thankful for them.  Truly, a huge impact is going to be made.  The one that hit me the hardest was one titled Nasaiah’s Day.  Watch it right now.  I’ll wait.  You can click right here.

This could have been about Jake.  The mom and dad could have been us.  I saw Jake in every second of that video.  The only difference was that when Jake was four, we didn’t know anything about autism and we had no plan, no support, and things were not going that well.

Sesame Street’s videos show several different families, with several different faces and different presentations of autism.  It’s wonderful.  It shows something that I can relate to, cry over, and connect over.  It’s not about labels.  It’s not about explaining all of the intricacies or therapies or anything.  It’s about loving kids, about celebrating what is amazing about everyone, and about being compassionate and open to having friends who are different from you.

I cannot turn off my joy.  Kids who grow up with these messages will be less likely to bully others who are playing alone.  Kids who grow up with understanding and compassion will be more likely to befriend and welcome others and be patient while getting to know them.  This is something that will make Jake’s world less frightening, less cruel, less unfriendly.  I know I am optimistic.  It’s so good to be optimistic.

A Review of Four Autism Myths

Recently a book was released that is making a huge impression and getting a lot of press for autism. It’s called Neurotribes, and it is written by Steve Silberman. I have not yet read the book, but I intend to.  Actually, I can hardly wait. I have read incredible reviews and cannot wait to get my hands on a copy.  The author, although not autistic himself, advocates for a reimagining and a major change in the way the public thinks about autistics. And it seems to be wonderfully positive.

I read the following article this morning. http://www.bbc.com/future/story/20151006-its-time-we-dispelled-these-myths-about-autism  I recommend reading it fully. It gets right at the heart of how feel, and clearly explains things that I know are true.

The first myth he dispels is this: Autism used to be rare, but now it is common. I know from my experience teaching, that there were students when I started that I really struggled to help. I did not know how to teach them, to reach them. I feel like I failed them. However, I also know that some of them moved on and eventually received an autism spectrum diagnosis. In hindsight, these students were demonstrating what we now know are autistic traits, but even just a few years ago, we didn’t have the understanding to recognize them. It is clear that there are autistic traits going back for generations.  People who were never diagnosed, but shared the same struggles.

Myth number two is this: People with autism lack empathy. I have written about some of my thoughts about this here and here. It is crystal clear to me that this is simply a lie, a misunderstanding of autistics that continually gets recycled. I know I struggle to be empathetic at times, and I can see every day that he doesn’t share this struggle. He is very in tune with how other people are feeling.

The third myth is this: The goal should be to make autistic children “indistinguishable from their peers.” I could and should probably devote some time to sorting out my feelings about this. It is wrong to me that anyone should have to completely change from who God has created them to be. However, being able to work within our society and to “fit in” are very useful skills. To me, Jake’s successes will be what they will be. It is my job to help him to find ways to cope, to thrive in the world he has been born into, and to know that who he is is wonderful. Being unaware of his autistic nature does not help other people to support or understand him. It would be so much better for him to make friends who appreciate and love him for who he is than for him to have to be “indistinguishable” in order to make friends.

The last myth is this: We’re just over-diagnosing quirky kids with a trendy disorder. This myth is hurtful to the families who don’t know how to help their children get through the day. It is hurtful to the families who are facing the difficult decisions about how to transition their autistic loved ones to adulthood or even senior citizen life. It’s hurtful to me, as I can see now just how incredible a diagnosis can be and what kinds of positive change can come from belonging to a community of support.

My husband and I had a conversation last night about last Christmas holidays. We took our kids sledding with their cousins. Jake had been regaling us with stories of sledding at school on his recesses, so we went there to see what he could do and have some fun. We had just discovered his autism two months prior. Well. Jake thought that sledding was the most fun when you climb up the hill and toss your sled down. Then you run around yelling.

We tried hard to get him on his sled. His cousins had a great time actually sledding. His dad felt like Jake was missing out on this chance for happy memories. I couldn’t believe I had been cheering for him daily over his sledding victories. I couldn’t believe I actually paid money for the sled.

Now, almost a year later, we have changed. We have learned and we have grown. This kid is quirky, yes. But he is also autistic. And that means that his way to have fun is fun. His memories will be happy when he is allowed to be happy. His brain is different. So of course sledding for him is different. It is not an over-diagnosis. It is a key to understanding, love, strategies, and hope.

 A Series of Updates

  1. Jake now eats his vitamins. The Star Wars games didn’t work.  I think they were too complicated.  We found a system, though, where he shows me “his moves” for a minute, powers himself up, so to speak, and then downs the vitamins.  Awesome!  It has worked consistently for about 12 days now and I feel like we have created a new routine that works.
  2. I am trying to use the words autism and autistic more in front of Jake, working them into conversation within earshot. Baby steps.
  3. The IEP meeting was great, and afterwards I felt much relief. He is really only struggling with social issues at school right now.  We discussed enrichment for him.  He really is such a neat kid.  They spoke so positively about him.  He’s sweet, polite, and kind.  He is respectful.  He is not defiant or interested in causing trouble.  He doesn’t disrupt his classmates.  The one day that he came close to a meltdown at school, his EA correctly realized that he was feeling overly anxious and provided him a chance to calm down and reset, avoiding a potentially bad situation.  Apparently the other students all get along with him and like him.

I am going to work at having some more social opportunities for him, playdates and stuff.  I don’t want to overload any of us, though.

  1. We have also started Tae Kwon Do with both Aiden and Jake, and that adds more stuff to our routine too. It was really hard to get Jake into it.  His dad did Judo as a teen, and won several medals that the boys love playing with.  His cousin also does Judo, so naturally Jake thought that Judo was the only martial art that is acceptable.  Unfortunately, where we live there is no Judo offered, Tae Kwon Do is our only option.

We watched some videos on YouTube of kids practicing and Aiden was sold.  He was so excited he could hardly stand it.  The first class he was beaming the entire time.  Jake, however, refused to participate, and we agreed that he could observe and hoped that he would come around.  The benefits were so obvious.  There were much older kids, teenagers, mentoring the beginners.  The relationship possibilities thrilled me.  There was a great focus on practice and support.  There was a lot of structure and repetition.  There were clear goals and rewards in place.  I just felt like it was exactly the extra-curricular activity for us.

Jake was still not sold.

And so we turned to our standby for such situations.  Bribery.

We agreed that if both boys participate in 35 Tae Kwon Do classes, we will buy them a big Lego Star Wars set.

Well, I had barely whispered the idea and Jake was all of a sudden completely turned around and ready to go.  He had to wait three days before he could finally participate.  Oh!  He’s so funny.

And so, they both went.  They did great.  They learned lots, and Jake was already correcting Aiden on Tae Kwon Do etiquette.  They came home and put shiny stickers on their new 5×7 sticker grids that we printed to chart their progress.

I am thrilled.

  1. Jake has missed parts or all of eight days of school due to fevers. I am jumping into the gluten free/casein free diet in hope of making a difference with this and I have no other ideas.  We are working as a family to try to slow down and make time for him to relax and play.  I have booked an appointment with his new pediatrician to discuss it but it isn’t until November.  All in all I feel quite frustrated and helpless with the fevers.  They are so hard on him.     
  2. The other change around here is that all of a sudden, Jake is reading.

At the Meet the Teacher night, his teacher suggested that if we read with our kids for eight minutes a day, four days a week, they could earn a reward.  I am motivated by rewards just like my munchkins, and so I did not want Jake to miss out.  I pulled out the reader he brought home, and like nobody’s business, he read it!

The next day I tried him on something less familiar, digging out Green Eggs and Ham.  Sure enough, he read that too!  The first half, anyways.  Tonight he read Go Dog Go to his dad.  I am incredibly impressed.  That teacher, she is teaching him to read!  He is getting it and is so proud.  He was just grinning so adorably tonight.  I’ve heard that there is a light bulb that goes on when kids learn to read.  I had no idea how amazing it is to watch.

It’s so good. I am so proud.  There is so much evidence of God’s love here and we are so blessed.