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.

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Not if, but when and how.

I have been thinking about talking to Jake about being autistic.

I have been thinking about it a lot.

There is no doubt in my mind that we will tell him.  It’s not an if.

It’s when.  And how.

He has grown up so much this year.  He lost two of his baby teeth this week.  It was so not an issue, his dad was more freaked out than Jake was.  He listens to us talk, he thinks about what we say.

He’s not perfect, but I can see that he is becoming a compassionate, thoughtful, and responsible kid.  I am incredibly proud of him.

Asajj Ventress leading a battalion of battle droids to cause mayhem on my dresser.

I know he needs to know.

An adult autistic, Chavisory says,

  1. They already know that they’re different.  You can’t keep them from knowing they’re different by not telling them.
  2. They deserve to know.  They are entitled to accurate information about themselves.
  3. Yes, labels can carry stigma. But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.
  4. Knowing how to describe why things are harder for you is not “using it as an excuse.”
  5. Having community is pretty much the best thing.
  6. They will figure it out anyway.

https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/

I want to help Jake develop confidence, courage, and self-esteem.  I believe that these traits, along with faith and a lot of work ethic, will be his most important life tools.

Jess at Diary of a Mom explains how she responds to the question of whether she told her daughter she was autistic like this:

I will tell them that we believe that knowledge is power and knowledge of oneself is the greatest tool imaginable.

I will tell them that we feel that secrets imply shame or fear. Or both. I will tell them that I want neither in my home.

I will tell them that we believe that our daughter deserves all of the insight we can give her into her strengths, her challenges and everything in between.

http://adiaryofamom.com/2011/12/19/disclosure/

I truly don’t know when.  Or how.  I’d like to ease into it, just little bits at a time, and without a big fuss about it.  I want to talk about how Jake is autistic without lowering my voice, without glancing at him for his reaction.

I want it to become a part of the natural vocabulary in our home, and have it be wonderful.

I want to be able to support and connect Jake, to build up his self-identity and value.

Jess can’t stop herself from asking a final question, and I feel it bears repeating.

I’ll ask a question of my own.

What if we could bring these kids TOGETHER? What if, instead of labeling them per se, we can give them a tool with which they can identify themselves and EACH OTHER? What if the label is a gateway to the monumental understanding that these kids are NOT alone? What if this group – this incredible group of people – this group that can so easily feel so desperately isolated from their peers – what if they found out that their differences, in and of themselves, are not so damn different after all?

I am quite certain that sooner is better than later.  I guess it is the how that I’m really stuck on.