Sunday, April 02, 2017

Autism Awareness - With Us 365

April 2 is International Autism Awareness Day. It's the 9th year of observing the effects autism has for an individual, family, and our communities. The international agenda includes this topic, which is of interest to James and I this year: The Road to Independent Living: From Early Intervention through College

At school, home, and the after school program, a gradual shift from therapy and intervention toward life skills and independent living has begun. James is 12, it's only 6 more years until he is 18. I am so used to thinking of him as 6 years old. Time to shift the horizon.

James is getting life skills for living alone, phone etiquette, cooking, and laundry. I've started handing him money and talking through transactions, such as paying for pizza at Little Caesar's or the grocery store. I have started a program of writing letters to family and texting, using my phone.

He is rocking the hygiene chart the O/T helped set up for him. His math program was enhanced and he is now bringing home chapter books to read. He is doing all this new homework independently now. Often all I need to do is double-check what he has done.

 The Boys and Girls Club have started to help support discussions about hobbies and joining socially with others. James is able to complete homework during the time for that. He is using a calculator correctly. He has started to "get" their talks about work he can do and enjoy to support himself when he is older.

I am thankful James has services, and a good team working with us this year. While not much is known for sure about autism, it has been a constant companion to me, 365 days a year, since 2007, starting with uneasiness when James did not hit milestones at age 18 months in 2006. Where we are right now is so much better than I'd feared when we started out. We still have a long way to go.

Saturday, March 18, 2017

About That Autism Conference ...

I am still processing the experience of being in a sizable audience and hearing parents talk about their lives with their autistic children, followed by Templin Grandin's mother and Temple Grandin herself.

Amazing and well-worth it, are the two thoughts that keep recurring for me. I laughed along with the speakers, because you have to laugh or your heart will break with some of the things you will have to deal with for your autistic kids ... and the rest of the world.

I kept crying too, more than I have in a while. Because so much just gets squeezed into a "don't think about it, just get through it" closet, papered over with "la-la-la-la's". I just kept leaking. But you know what? I had a lot of company. And it was dark. It was therapeutic. So there.

I had renewed appreciation for James' strengths, as well as his overall good health.

I felt more hopeful, among all the threats to my family from our current federal government, about the support and strength in numbers of parents and professionals dealing with autism and the resulting fall-outs.

I didn't feel alone. I was surrounded by others who had to fight for simple things for our kids and ourselves. Who found themselves cut off from friends and family members despite the best of everyone's intentions. Who could hear the weirdest stuff and just nod heads in solidarity.

It helped, to hear that autism tears families apart, as mine has. It still hurts, but it's being talked about. Confronting problems goes a long way to finding solutions and a measure of prevention. Hearing Temple Grandin's mother talk about her family ... well let's just say her story is so much more true than a certain former Playboy bunny's story and I appreciate Eustacia's sharing her story with us.

I felt a sense of accomplishment, in the simple act of following through on a long-standing wish to see and hear Temple Grandin in person. It was symbolic of breaking a depression of years of denial of simple things like driving 65 miles to visit my familiar stomping grounds because "gas is too expensive".

I picked up two books, feeding my inner Heroine Granger: A Thorn in My Pocket, by Eustacia Cutler, and The Loving Push,  by Debra Moore and Temple Grandin. They have helped me refocus to deal with some long-standing challenges. Hence working with the school for James' chart and his taking showers on his own.

I got to meet and talk briefly with three amazing women: Regina Stoops, Feda Almaliti, and Temple Grandin. Those encounters will be whole other posts.

This was a great boost, emotionally and logistically, to get me going again to tackle my current challenges. I sure am going to need it.



Friday, March 17, 2017

Matisse Appreciation

James has been enjoying art as an elective this year. I used to like doing crafts with both kids when they were younger, including cut outs with construction paper to make cards and collages. It's nice to see him enjoy it as he grows older.

James brought home a portfolio of art work from this recent semester of school. He wanted to share this with me:


It's inspired by Matisse, who is also once of my first and perennial favorite artists. When I was in college, I painted a huge mural from an odalisque painting by Matisse. I never expected being able to share something like this with my son. It makes me feel very close to him.



Thursday, March 16, 2017

Careers, Hobbies, and Social Stuff

I have been working with James on the idea of developing a hobby or hobbies, so he can become more independent and directed with his free time, while engaging more with others with similar interests.

Tonight was Career Night at his school, so we went to keep pursuing this goal. It's also a good idea to get James thinking about work and what kind of life he wants to have. He wore a nice polo shirt, clean pants, and his regular shoes. I dressed up a bit.

Well, we got there and made the rounds. I tried to not lead James too much at the tables for social interactions, but his questions tended to sound like:

  •  "Do you know about the high school?" (high school teachers and random tables after that) 
  • "Why do you like the government?" and "What was the other country you saw?" (for the Marines representative)
  • "Yeah" (lady with the cute Tutu table)
  • "Do you know where the food is?" (local market representative).
That's okay, we are practicing our social interactions and learning about classes and job opportunities. 

We brought back schwag.

I found out the local market starts hiring at age 16. That's only four years away. Hmmmmm ...


Wednesday, March 15, 2017

Breakthrough

So, for years it has been a nerve-wracking prospect to get James bathed or swimming. While he was fascinated with water (as is typical for many kids on the spectrum), both he and his sister hated water on their head, on their faces, and especially in their ears. It really distressed them.

James kept screaming and shrieking (and he has great lungs) and fighting bath time until fairly recently. The fussing and whining and "ow-ow-OWWWW" continued to make bath time the equivalent of a forced march. Up hill. In the cold mud.

Not a lot of bathing was done.

Enter a fine combination of being able to hear Temple Grandin talk and James' team at school. I cannot tell you what exactly shifted, but my approach to bathing went from "omg, how long can I the put off" to "this needs to happen and here are your choices." James' OT gave James a bag of hygiene products for guys. James' teacher and OT came up with a chart that looks like a combination of PECs schedule and a hygiene chart. It's additional homework.

James does not want to come to school with his homework undone, which - yay -  works in our favour.

After about a month of this, James has asked to and started to handle all bathing aspects on his own. After testing to see if Mom really notices if he uses bathing water or not, he has committed to the schedule - to the extent that he now initiates bathing and prefers to shower.

Remember James and the shower? Yeah. This is happening.

Growing up, being responsible, being independent. So proud of him. So thankful it finally happened!

Tuesday, March 14, 2017

DVD Dividend

James recently watched Madagascar again. This time, Mr. Louis Armstrong struck a chord. Pun definitely intended. For the past three days, James has been playing, replaying, and re-re-re-replaying What A Wonderful World.

At first he asked questions about why they used the song in the movie. It's a bit trickier to explain than you'd expect.

Then he started to sing. And it was one of the coolest, sweetest things I've heard in a while. We sing it in the car. We experiment with the timing. I'll try a different song and James will stick with this one, grinning ear to ear.

Then we found this:

Makes a nice break from the everyday and national crazy going on right now.

Saturday, February 25, 2017

Temple Grandin

Autism in the Family is an incredibly apt title of the conference I'll be attending today.

Temple Grandin is the headliner. Her mother will be there too, and I am intensely interested in hearing what she has to say, as autism is indeed in my family, which has disintegrated, despite best efforts to prevent its happening.

A few thoughts about Temple Grandin:

  • I first heard about her from my son's helpful and informative pre-school teacher.
  • I have long wanted to see her in person and hear her speak live. Being able to do so today is an incredible moment for me.
  • If you don't know her, this is a great place to start: Temple Grandin Trailer
  • I wonder what she considers talking points for autism for parents and educators.
After so many years in isolation, I am looking forward to being in a room of other people who get it, and have lived their experiences with autism and "Different, Not Less".

Saturday, February 11, 2017

Freedom to Pursue Curiosity

Our fascination with Alexa continues. James is using this voice interface to look up definitions, something we struggled with when using a book. Now, he puts his energy into reading all the definitions and choosing one to write down.


Instead of getting hung up on the fine motor skills that frustrate him when using a dictionary, James can work independently, and is curious about words and definitions. This sometimes leads to questions and discussions, which I think is great.

Monday, February 06, 2017

Sensory Overload and Touch

I see this and am reminded of Temple Grandin and her explanation of deep pressure touch as a way to calm sensory overload:

James was under his heavy fleece blanket for quite a while tonight, laughing and cutting up over a book I'd downloaded for his Kindle. It was quite noisy in the house tonight and this was his response. Gradually, he was just singing to himself. He came out from under to see what I was up to:

Sunday, February 05, 2017

So Proud

James is receiving grades for the first time. I received a photo and text on my phone from his aide this week. Someone got a 3.6 GPA.
This is the boy who kept his speech therapist guessing for over six months whether he would ever talk. The child who some special educators assured me was intellectually incapable of learning or doing math. The guy once labeled trouble, disruptive, and literally put out in the hall and otherwise sidelined against his abilities and legal rights to suit school administrators until his family and support team stepped in to back him up.

His learning and communication are unique. He is unique. So proud he is still learning and growing.

Wednesday, January 18, 2017

AI Buddy

James got a Kindle Fire for his birthday last week. He was very happy to play the apps and watch YouTube video of his beloved Monsters, Inc. Run game. Today, he discovered Alexa.

Siri's cousin is in da house! Here are some highlights:
Oh. My. Goodness.

J: Are you doing ok?
A: I am good; ready to help.

J: What is your favorite colour?
A: I like seafoam.
A: Infrared is pretty nifty.

J: Where Are You?
A: I am here and my head is in The Cloud.

and, the ever amusing:
J: Can you Sing for me?
A: Who me? I couldn't. I ... hit it!

PS: We just discovered she will sing "Happy Birthday" to you. He got the biggest grin on his face and bounced in time the whole way through.

Friday, January 06, 2017

Food Prep Pep

James has been upping his survival skills by learning to prepare some food for himself: toasting frozen waffles, assembling snacks for his lunch bag, and cooking his chicken nuggets.

This may not sound like much, but small starts are big things with us.

Over the winter break we even made and baked chocolate chip cookies from scratch because a friend with a bad cold sent out a distress call for cookies via social media and we thought "what the heck - why not?"

The cookies were weirdly shaped, but completely delicieux.

From the movie Ratatouille: (Gusteau) "You must be imaginative, strong-hearted. You must try things that may not work, and you must not let anyone define your limits because of where you come from. Your only limit is your soul."

Cooking, autism ... it's your life - go for it!