Showing Care and Kindness

A common thread for parents and caregivers to those on the spectrum is a deep wanting to know what their child or person is thinking and feeling. After a while we think we know. We hope we are making correct guesses.

And the there are times when a sweet connection is made, and it is everything. 

I remember, after months of being told my son might be nonverbal, he began to make progress. I cried big mama tears when, at age 4, he said "I love you" to me.

The bear hugs (sometimes flying). The big smiles and starry, happy looks at me from his heart through his eyes.

The most recent illness, with me on the sofa, made better by a concerned text from his room to mine: "Mother, do you need ibuprofen?" or a shy shy "there there" pat on my head.

The Thank You card he insisted on giving me because we were sick on Valentine's Day and by the time a friend could take him to the store they were out of those cards.

Tonight, being offered a cookie that he baked with his class today at school (it was delicious). 

I am touched, and I am proud of him for being caring and showing it.

World of Words

 Communication with James fro me continues to have its Dada moments. This morning, for example, he keeps wandering into the kitchen and asking if I have noticed the van or truck driving by outside. We live on a small quiet street, and I am setting up our week, so no. There are times when he will come out of his room and ask me if I like/hate Kim Jong-Un. Several times he has asked if our cat has eyes (ummmmm, take a look and yes/why???). Last night he asked about explosions. When I asked where, he replied "National Geographic".

I overhear him talking to his cousin or aunt on the phone and it sounds much more normal. I am so glad he is able to practice more expected types of conversations - it helps him feel more connected.

Our more normal communications happen by texting, Facebook posts, or walkie-talkie bursts ... and we are in the same house. Those exchanges revolve more around are we going out (almost always a "yes"), is there a skunk under our house (sadly also a yes, I suspect), did [insert name] really have the flu (yes), and does Disneyland cost a lot of money (yes again).

There is so much going on inside his head. I'd love to hear more. On the other hand, I will never be bored. These brief exchanges require history retrieval and sleuthing skills to figure out where they may be coming from, to get a bigger picture. I will keep encouraging communication, so he can make himself heard when he wants or needs to be heard.

Perspective, The Importance Of

Perspective. 

Autism has a way of expanding horizons and showing us there are multiple ways of looking at things.

There are multiple ways of communicating. 

There are multiple ways of being, experiencing joy, love, and contentment.

It helps me to keep this in mind, when I get frustrated with managing a life that includes Autism.

Here's to changing the world, one thought at a time.

More Dada Moments With Autism

"What just fell out of me ... brain tubes?"

Say WHAT?

James clarified this was not actually the case, relieving his mother's anxiety. But not the perplexity.

Often James' inner dialog becomes an audible monologue. At best, it's confusing with an occasional delight of Dada.

At it's worst, it's the unconscious zingers driven by emotion and tempered with nothing. There are no filters and it has caused trouble at school, social groups, and with his sister.

The only occasional silver lining is that if I listen, I can get a bead on what is going on with James without discussions that are often frustrating, because the topic is abstract, and James does not want to get into trouble.

It's also better than a nannycam - because if he's been watching rant videos on YouTube, it comes out, scripted, in the monologue.

A Good Day

It's Friday, and I am in Starbucks having computer time, while ABA is going well in a corner, over the ever fascinating iPad. They are taking turns between talking about school, the weekend, TV shows, and playing Angry Birds. Talking about Angry Birds.

Yes, folks, The Angry Birds 2 Movie is coming out this summer, and we are going to see it:
 

James is doing a really good job, not letting the music put him off. It's kind of funk, but I can imagine him worrying it's some kind of rap music, which he does not like, because it's what he hears outside, with really bad language (a trigger) involved.

I got up early this morning and baked scones from scratch, then cleaned the kitchen before calling James. He came out in a good mood and ate four scones and some milk. We kind of joked around until it was time for school. He got ready and caught the bus. Again, he was in a good mood when he got home.

After I got home from work, I reminded him we had ABA and that we needed to go to a Starbucks. He went with a bounce in his step. He recognized the ABA associate (whom he'd met briefly, while really upset) and greeted her. Inside he picked out a table and they got down to it.

I'm thinking how going out for ABA has really helped change the dynamics. It's also helped that the ABA people are committed to working with me to make this work for James. They listened to me when I said there was too much emphasis on talking and answering questions. They listened to my instinct that going to more neutral ground might help.

I just got the day's report from James' teacher. The title reads "Great Day For James!"

Yes, yes it is!

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.

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.

Gift of Conversation

Last night I went out (!) for my company's holiday party. I was frustrated because I was running late. Luckily, James was staying at home with friends and had already had dinner. I ended up enjoying the evening and coming back home after James went to bed and had a blissful night's sleep.

James let me sleep in until around 7, a good hour and a half later than usual. He also did not wake up in a panic at 3am, calling for me (which he has done in the past when I return home after he has fallen asleep).

Instead, he  politely knocked before entering, calling "Are your here, Mother? Did you come home last night?" He then came in to sit by my bed and we talked together about my night out, Christmas, and trips to Disneyland. It was so pleasant and I was secretly elated with James' new conversational abilities.

He is such a neat kid, and for years I longed to hear what he was thinking. So while I was listening and smiling with him this morning, inside I was saying "YES!!!!"

Angry Birds Metaphor

So it's raining and James and I are talking as we make the one big round of errands so we can stay home later, enjoying a warm, dry afternoon. We wound up discussing Angry Birds, always a favourite theme with James.

He had an interesting insight into the Matilda Bird, whom he has been drawing obsessively. To the point of roping me into a hunt for black paper and a white crayon (yes, we had both squirreled away somewhere) so he could colour her.

James wanted to know if I'd noticed that she is rounder before she drops her egg, and thinner after. I conceded he had a point. Why, he wanted to know? I asked him what he thought. His answer startled me:

"I think she puts the angry into her egg and when she drops it on the piggies, she gets smaller."

What a great metaphor for how you the deflated, de-energized state after an angry outburst.

Falling Into Calm

I saw this article on My Autism Team about how non-verbal children try to communicate with people and all I could think of was "YES!!!"

I remember this, and this, and  this time.  How James adores Wall-e at home, because the robots communicate without words for so much of the story.

Even more, my own connection to the importance of spending chunks of quiet time with both kids. Over the past five years of sad things, frustrating things, falling apart things ... I have learned to "fall into calm." When the kids are hurt, storming, and all my mom plans and attempts at "normal life"stick their figurative tongues out at me and implode, stress levels soaring like a rocket launch, I have found that lowering my voice and imagining grounding images to make myself an anchor of calm is the most effective thing I can do. It also helps me "hear" what they are trying to say.

It makes sense, after all. These hyper sensitive people, whose nervous systems have already gone critical, don't need shouting or scolding. They are immune to embarrassment in this moment -- that's all my own show. Their ability to cope, regroup, and express are different and stuck from what most people know. There is a real person, trapped in there: sad, angry, hurt, frustrated as heck, and alone.

Who is there to model a more effective, socially acceptable behaviour? Well, often, me. And it is so easy to want to hush them and not make a scene. Clean up the messy behaviours. Assume you know what's going on (or worse, you're so tired and burnt out you just want it to stop) ... when I can get myself to stop and spend time with James and his sister, shutting out the Should and Expectations, I always learn something new about them, and realize I have been missing cues from them.

The best quality time experiences are lovely, lazy parcels of just being together and enjoying Right Now. And there are so man ways to open up to each other: playing, touch, drawing, photos, playing in nature, or music. Sometimes the best revelations and connections come from being able to fall into calm while surrounding by messy, howling chaos. Because sometimes this is when the kids most need us to hear what they are trying to say, in their own ways.

And do they appreciate that extra, focused time with them? Yes, they do.

When Worlds Are Cross-Compatible

I know time is passing: I have kids and a garden. I know technology constantly evolves - I work with it. Sometimes, I am also not paying attention, so I get surprised when sometimes the way I used to do things ... gets replaced by an app.

Our old fax machine stopped working soon after I stopped my telecommuting work almost eight years ago and we never thought to replace it. I was not working so could make copies and take or mail them to where they needed to go.

More places increasingly accept photos that were taken with and emailed from a cell phone. HIPAA means that more records are being shared securely in PDF format.

Over the past year we've had to fax a lot of documents suddenly: applications for financial programs, job hunting, medical records, and school programs. Even though faxes are still needed, it's getting harder to find places to send them.

To keep cash outflow down, I haven't updated my phone since 2011 (which is almost as bad as a flip open phone in the tech industry). My Kindle takes nice pictures, but not PDF-worthy ones. The Kindle does have an app for translating photos into scanned documents, which then upload to the Cloud. Finally, I get Cloud Computing. Tonight I take Tiny Scanner out on the Cloud for a drive.

I really want to Evolution Elves to take away my home office clutter:

Kimochis: Managing Emotions

Something new from James' ongoing sessions at the Swain Center: Kimochis.

Photo courtesy of The Kimochis® Feeling Lessons

I saw the handouts last week and thought: "Cute! Hmmm, why??" Then I completed the behaviours homework with James today and understood: the toys are something visual and tactile that James can use to understand emotions, body language from others, and learn how to better interact with other and regulate himself.

Each animal is identified with an emotion, and comes with a back story/history. The kids will learn more through a process that looks like it blends story boarding, picture schedulers, and PECS.

Like his biofeedback sessions, these lessons will visually help him connect what is going on inside him with the world and people around him.

This is all my take-away. For more about the actual program, see them online.

I had no idea this was out there. I am excited to see where this takes us.

Reactivity Zone

James is still participating in weekly (well, not so much over the holidays) social communication classes. The program focuses on the Zones of Regulation and it is based on a fantastic premise and group of ideas to help kids learn to communicate instead of act out.

Part of a free download from zonesofregulation.com

Each week, James resists by saying he doesn't want to go. Almost every week he comes back, excited about the program and being with kids his own age outside of a school environment.

It's helped him communicate the emotions that get masked by smiles or a hanging head. A couple times we check in with him about how he's feeling and discover he describes himself as Red when we thought he was Yellow, or even Green. It's an eye-opener.

James is supposed to be starting a Speech program at his school that will dovetail with this program. I am not holding my breath though. James and his speech sessions at school is a whole other topic. Or three.

Sunny and Bright

Well, Friday was better, but still had issues. Many were the emails that crossed between the doctor and I. Aside: I like that you can attach files or photos in the messaging system to our pediatrician. Very handy for rashes and showing messy things that should not be brought into a doctor's office.  Friday and Saturday nights, however, were excellent-- full night's sleep for everyone and no more moaning! OMG, the constant moaning does us all in.

Saturday, James was back to eating regular foods. Not his regular amount, but hey, he ate it with relish and it all stayed down. Then came the mystery BM in the afternoon. Neither kid owned up to producing it. After a lengthy parental CSI debate, my husband and I deduced it belonged to James. Hooray!

James was back to jumping on the trampoline and doing more than lying on the sofa with his iPad. I even took him to the gym with me so he could play in Kids' Klub while I worked out, and was told he had a good time. He asked to have his sister's kitten come out and seemed to enjoy the kitten mayhem that ensued.

Today, he is very affectionate, hugging me and having conversations. As I type this, he's doing math and spelling with me on his Magnadoodle. I have noticed that James is talking now, and not largely stimming or asking the same question repeatedly. It's like someone took a lid off and we can see the person inside and interact more with him.  He is being funny on purpose, calling Jack Skellington "Jack Frosting" and renaming challah bread "jolly bread." He's making quiet but thoughtful remarks and requests. We even played together building Leggos, which he's never done before, despite encouragement. More on that tomorrow.

Another "I Don't Get It" Moment

Background: James' big sister had her 10th birthday party yesterday here at our house. This alone is worth a future blog post.

James was utterly delighted. He loves company and kids, and he's gotten to know these particular friends, and they him. It was a very comfortable, relaxed event for all. James wanted to stay with the rest of the kids, watching and reveling in all the action. We kept checking in and everyone seemed fine with this, so we just let them all be.

There were visits to the new birthday kitten (now a stately 4 months old). Several spirited (and loud) games of Super Monkey Ball on the very cool in-home entertainment system their dad rigged for them up out of thrift store (and dump) finds (which could be it's own cool blog right there). Pizza was served during a movie -- Brave, by request of the birthday girl.

About half way through the movie, James started coming up to me, saying "Oh Mommy, I'm so glad you're back!" before hugging me for longer than usual. Took me a bit to connect Queen Eleanor being turned into a bear and me.

You see, about two weeks back, I flew out to New Mexico to pick up and drive back a used car to replace our totaled van. This took about three days -- the first time James has had to do without me since, well that one night his grandmother stayed with both kids so my husband and I could spend a night at a local B&B. That was back in 2007, I think.

Now, during these three days, James was fine. No anxiety, repetitive questions about where I was or when I'd be back and his sleeping at night was fine. I don't know why James connected the dots as he did between my trip and the story of Brave. I do know it is nice to be back home, and that despite James being fine, I was missed.

How He Makes Me Smile

Exhibit A: Hurt Waffle

6:50 this morning, from inside James' room: "Mommy? Can I come out?"

Me: "No, kiddo. Ten more minutes."
(It's part of my strategy to curb his early morning wanderings.)

Note: I'd already made him toasted blueberry waffles and given him some milk and had him eat so he would not be ravenous.

From depths of bedroom: "Ten? Ohhhhh nooo!"
Thud, as he topples back into his car bed. Then, "Help! I hurt my waffle!"

Time for more coffee. He gets out at 7.

When You Least Expect It

James seems to be settling back down and into a better pattern of behaviour at school. Thank goodness. I am trying more to balance fun times on the iPad with some school work and social time.

Tonight, James popped out two new things on me:

(One) He had a normal give-and-take conversation with his sister about their days at school, and then asked me how my day was and interacted accordingly. This happened on our way back from an unplanned, post-dinner trip to the post office to pick up some mailing boxes. It was hard to not scream with delight as I drove home, listening to this unfold in astounding simplicity. I think my jaw was on the floor for two blocks. Normally James scripts, or must be prompted to have a conversation. This was stunningly different, yet very relaxed.

(Two) He made up a story all on his own and enjoyed telling it out loud in one continuous story line. OMG & try to not scream with excitement again.
Back story: I bribed big sis to put him to bed. She got to stay up a little longer and have chocolate ice cream if she read him a story and talked with him for a bit. He LOVES this, BTW. She made up a very short TeleTubbies story for him. He then made up one for her about Princess Fiona opening her door and being very surprised to find Barney there. She wasn't happy about that (who would be?) and slammed the door on him. Then suddenly she was on a plane, which was traveling upside-down. Not sure how that happened, but she had many exciting adventures in TeleTubby Land after she landed.

I am not sure why big things like these seem so random and unexpected with James. I suppose it could be because he's always been so independent at selecting his moments to display his developments, and doing it so casually. I find myself having to pinch myself to believe that James is actually doing the new activity (and it's not one of my dreams) or catching myself up suddenly and realizing that this is a first, and not the status quo.

It's like a big gloop of ketchup that you get after shaking the bottle for a while. Like hearing your name called at a raffle drawing you entered during a big fundraiser. Like a warm smile from a stranger for no reason at all. When I least expected it, James totally made my day.

Biiiiiiig Huuuuuuug!

April Foolin'

James' Big Sister and I were playing little April Fool's jokes on each other:

Me:  "Time to get ready for school ... April Fool's!"
She: "Mommy, guess what? I am going to eat only vegetables today. April Fool's!"

... etc. We were having fun.

Then ...

James: "Mommy, I am 8 years old!" and that *look* of happy expectation.
After getting over the shock, I prompted him by saying, "Good one, James! Now you say 'April Fool's!' "

James: "April Foooooool!"

Such a little thing. Such a big step. So proud of him!

Resource Find: Communication Printables!

We are excited to participate in the CATS Program for a second year. We have another great student who's already made a great connection with James. More on that later!

Right now, I'd like to share a fantastic link to over one hundred free visual communication tools that I found out about through the CATS Program grapevine. The site is Practical Autism Resources and I will have to take a look at this site later. I am too busy drooling over their Downloads page. I've already printed a few great items I can hardly wait to try out, especially now that we are using the great Activities Sign Board the Behaviourist gave us. These tools will mesh well with this board.

James' Activity Board

Screen Shot of Downloads page on Practical Autism Resources site

 As a web designer/developer, their simple, informative, and easy-to-use layout has be excited: someone gets how to present lots of information online so it can be used! As a parent to a son with ASD, verbal delays, and auditory processing issues, I am ecstatic to see so many helpful tools in a comprehensive array of topics. As a Mom in a family that's teetering on the financial brink, I am thankful they are free.

Here are just a few that I've downloaded:
* Worksheet modification stickers / matching.doc
* Picture word cards: Vehicles / buscarpwc.pdf
* Opposites / opposites1.pdf
* Home and Community / communityicons1.pdf, homeroutines.pdf, needsandstates.pdf
* Behavior Punch Cards / behaviorpunchcard.pdf

OMG, they have BINGO sets! They have items in Spanish, Portuguese, and Italian. Too good to not share. Enjoy!

Special Exp/ Wordless Wednesday: Talk2Me

I am taking a parenting class series. The first night I heard a lot of information that I've already picked up before. But one statement hit home and I've been thinking about it ever since.

Even though not all our kids are verbal or eloquent, they will find ways to communicate with us, trying to tell us what they need.

I think of the running off, grabbing & throwing of things best left alone, the verbal stimming. Then my son will look at me like in the picture above when I try to talk with him. Goes nowhere fast. Very frustrating.

That class really turned on a light for me. Talk to me, James, I will try harder to listen with more than my ears.

For more great images or to share some of your own, Visit Special Exposure Wednesday at 5 Minutes for Special Needs.


and ... Wordless Wednesday