Community Rules - Practical Applications

 In the same ABA session that explained and defined House Rules, James' Team also covered Community Rules, or CRs. The CRs are to address safety issues, such as not walking into the street, keeping his seat belt buckled when riding in a car, and using Friendly Language.

Yesterday James and I used these CRs on the drive to get hair cuts, the hair cut appointments, and the drive back down home. They were in use again when we drove to our in-person ABA Social Group and home again. It wasn't a complete reversal of the negative behaviours and scripting that we've been struggling with recently, but it did make things much smoother and calmer.

As James heads to adulthood, it's more important than ever that I do what I can to help set him up for success, which I see as living as independent a life as possible, enjoying the activities he likes with a productive routine and a good support group.

I am so grateful there is a young adult peer group that he can join. In general I feel this is crucial for teens, people on the spectrum even more, and James in particular, as he is a social and curious guy. In the past, I have seen great benefits to James from social modeling that comes from in inclusion. I think being able to participate in regular summer day camps, swim lessons, and classrooms really helped him understand and and develop not only language, but turn taking, chore performance, and the ability to play with others. I feel all this has enriched his life.

Even though he is almost an adult, he is still testing the limits, and these rules are a good transition between unspoken rules in younger/smaller settings to more adult classrooms and work environments, where rules have to be spelled out and adults are expected to follow them. 

Autism Speaks has a nice page that discusses Social Skills and Autism in easy-to-understand detail and also provides resources. 

Isolation - How You Can Help

I have written a lot about the negative emotional impacts of isolation that comes with being a parent of a child who is autistic. The isolation saps already low energy and makes it easy to get locked into patterns - sharing and communication with family, friends, and the community require constant and costly efforts.

For us in the suburbs past the 2nd grade, if my kids were not doing the same programs as other kids, they were locked out of social events like birthdays and get togethers. Parents hesitated about coming over. The friends that we made seemed to move out of town. 

Former friends were great to see at reunion events. Because of sensory overloads, developmental delays, and communication challenges (not to mention eloping), I could not engage completely with my friends and kids. There was friendly interest in our lives, but it was often not deep.

The older we all got the more I noticed the lack of people being able to slow down and break things into smaller parts. I would have been like that too, if not for my kids. 

Here is something new to consider for Autism Awareness Month: Do you have friends or family members affected by autism? Are they still important to you? Consider doing the following:

• Initiate get togethers and persist if they get canceled at the last minute. Be prepared for a slower visit and instead focus on time together.
• Please don't try to share inspiring stories or new treatments you heard about. Ask questions instead to learn more about what their life is like. 
• Volunteer to contact representative to protect services or bring awareness to housing, education, and personal rights issues.
• Please share news about mutual friends and interests - photos are great too.
• Consider your affected friends and families when planning social or other events. If the planning does not work out initially, consider adding a new one later one that can accommodate a slower pace and avoid triggers.
• Find a way to keep impacted families and friends in your life - send a postcard, share a recipe or joke, or send a text if you see or hear something that reminds you of them.
• Try being a pen pal (you or your family/kids) - everyone loves getting mail and sometimes being able to practice writing as a truly social experience can be fun for our kids.
• Contribute to non-profits that help families impacted by autism. In our area, this includes:
•  Matrix Parents Network
• Anova Center for Education
• the Early Learning Institute
• Rotary Club of Healdsburg Sunrise
• United Cerebral Palsy North Bay
• Common Ground Society.

Please don't be afraid or ashamed to try something new in including impacted friends and families - we do it every day and learn to roll with it/through it. We assure you there is a heady sense of accomplishment for at least trying. We'd like to have your company.

Sunday Social

Hello, Fall in California. Hello wildfires, smoky skies and flashbacks to the '17 Tubbs fire and '91 Oakland Hills fire.

School was canceled Friday, due to bad air quality. James' anxiety was up considerably. He keeps asking if our house is on fire and relives our evacuation of last year. Family members in So Cal evacuated over the weekend. There are other challenges coming this week.

What to do, to get us both off our computers and out for some exercise and social time?

Why thank you, Cost Plus!

Their holiday campaign to Find the Golden Bell in their store was a great experience. We poked around the departments with other shoppers on the hunt, muttering the daily clue to ourselves.

James kept asking staff for hints and they patiently told him the one clue they were allowed to give. I wracked up another 3,000 steps on my FitBit - yowza! and did a little pre-holiday shopping.

We did not find the bell on either trip to the store on Saturday, but we met a lot of understanding, generous people who asked questions about James and watched his earnest searches with benevolence and an overall friendliness.

This morning, with a little assistance from some ladies with a lot of heart, guess what James found?

I let him shop and use his $10 gift certificate. He chose a mug and a deer ornament.

I met a lot of lovely people and made some new acquaintances too. To quote The A-Team (remember them, boys and girls?): "I love it when a plan comes together!"

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.

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".

April 2, And I See Blue

World Autism Awareness Day is April 2, 2016

How has your Saturday been going? I have spent mine doing errands, taking care of groceries, errands, and clean up. James is enjoying Little Einstein videos, because they discuss music and musical instruments. We played Red Ball off and on.

Why this post? 

If you don't have anyone in your life who is autistic, you may not be aware that April 2 is a kind of world-wide call to action about a developmental issue that is may look invisible, but will be a significant part of our futures.

What do I mean by calling autism invisible?

Well, autism tends to not have physical deformities. Autism presents differently for each person. For some, there is not a whole lot to see. Examples:

• James is now doing his homework with only verbal prompts! He is 11, and his homework is basic arithmetic (this year -- last year he was doing long division, but that is a big digression) and his reading choices are pretty much "Green Eggs and Ham," "Where the Wild Things Are," and "Captain Underpants." I will supplement with multiplication tables and Chrestomanci, but am thrilled that this is the year he tackles homework without my being there right beside him.
• James is becoming more independent, doing his laundry, taking out garbage, and helping me do the grocery run and pick up around the house. These are life skills that take perseverance to make into habit, and we were  told a couple times he'd never be able to do this. We tried anyway, and will continue to do so. Money is a tough nut to crack.
• Last week, James was able to tell a family friend about a tough day he had at school. Because of his language delays (We were told after 6 months of speech classes that he might be non-verbal), this is huge. James started speech therapy at the age of 2 and continues to receive it at school. With his participation in a social communications class at the Swain Center, he is finally beginning to be able to let people know how he is feeling.
• This morning, I took James with me on a breakfast errand, as he wakes up happy and bouncy. His teen sister needs a peaceful wake-up. It is a fact that siblings of kids on the autism spectrum need to be remembered, and have their needs met too. It can be sadly too easy to lose sight of, amidst IEPs, appointments, and other worries. I plan special time with my daughter because we both enjoy it and we both need a break from autism idiosyncrasies. 
• I have to make a to do item to call, text, or email my friends. Autism can be very isolating. I can't do a Girls' Night Out or cannot attend many social events due to sensitivities and other issues. Movies are either in-home or Sensory-Friendly theater showings. Eating out can be  nerve wracking.

All this to say ... please consider that autism is alive and growing. Legislation for Autism continues to be debated. Healthcare reforms for autistic patients come and are challenged. Every 11-20 minutes, a parent or family's life take a sharp detour with a diagnosis of autism. As many families tend to fall off the social radar of many friends and family, they become unseen.

Autism will affect you, either directly or indirectly. The current large swell of previously diagnosed children are fast growing up, along with James. The benefits of early intervention are many, but what will their futures be? It is my hope that autistic adults will find their places in their communities, making a life working with others in places like the supermarket, schools, and local businesses.

Thank you, President Barack Obama, for recognizing World Autism Awareness Day.

What can you do? Be supportive of those friends or families sealing with autism. Recognize that legislation relating to IDEA, Regional Centers, and healthcare affect not only you, but also those largely unseen, growing numbers of individuals with special needs ... and send an email or make a phone call when voices are needed to continue services and programs that are designed to help them be as independent as possible.

Happiness Is ...

Finding and playing with all our pals from Peanuts.

While we don't have a warm puppy, we do have two sweet cats!

Outdoor Persuasion

James does not want to leave the house. The hot weather and leaf blowers in outside the front door do not help our efforts to get him outside.

This morning James slept in a little. Then he had breakfast and had some iPad time. He cheerfully got changed out of jammies and into clothes, helped sort and put away his laundry, and finish his math and writing homework. I learned pretty quickly that the alarm on my online timer made him cry. I switched to the microwave's timer and we had no further issues.

So ironic, because I used this website to time my contractions the night before he was born.

He balked at going to the Farmers' Market with his sister and I. We haven't been going much this year because our favourite bakery is no longer there. I figured today was not too hot or crowded, so would be a good, short-ish outing for us all.

Once we got there and bought a tasty sourdough baguette from Costaeux's, he was cheerfully skipping alongside me as we checked out samples of Sonoma County's early Fall Harvest. Let's see - peppers were everywhere; delicious, glowing peppers. Apples are still coming in, as are all varieties of grapes. There were even some nectarines and the peach slice I tried was so fabulous I bought one to share with my husband for dessert.

The crowds were light and mellow, which made walking and people-watching easy and fun. James and I saw on a low wall to catch the live music performance. He loved seeing them play guitar and flute. His sister sucked on a honey stick watched the dogs romp with their owners on the lawn. I bought some of those flavoured straws when I picked up a jar of blackberry honey (which is fantastic tasting and made locally).

You would think this happy event would have mellowed him a bit. But no. First thing James said as we got back home was "I am going to stay Right Here!"

Earth Day

Our local Farmers' Market started up today for the year. What a nice way to celebrate Earth Day! Besides the usual vendors, there were live performances and booths for earth-friendly businesses, health centers, and community programs. The local gardening club put on a fine plant and flower show.

We made this event our family activity for the week, and arrived early so we could park and plug in. Yes, plug in. The town recently installed 3 electric vehicle charging stations and our Leaf was the perfect fit for this.

Although the Bread Lady was not there, we found lots to see and buy. We're trying a bag full of honey-wheat rolls (they actually look like small loaves), golden beets, and gala apples from our favourite apple guy, who told us all about the uses of cotton & its by-products. And in the spirit of supporting our girl's interest in baking with fruits, I bout a raspberry cane from the garden club table and several raffle tickets for luck.

The atmosphere was excited, yet relaxed. The crowd was appreciative of the stage acts (senior center's Zumba group and the Healdsburg Belly Dancing troupe). Parks and Rec had volleyball nets with beach balls set up for kids, and I saw a modified game of horseshoes with Hula Hoops. Families from all over were having a blast.

The stilt walkers gave me 70s flashbacks, which was appropriate, seeing as Earth Day got started back in 1970.

And that's just the morning. We had a pool part this afternoon too!

The FAAvourite Fun

Where has James continuously asked to go visit, ever since he started preschool, over 5 years ago?

That's right, the Sonoma County airport, officially known as the Charles M. Schultz Airport.

He loves to watch the planes take off, their spinning propellers, and the observation posts around the field. He likes visiting in December, to catch the tree of lights atop the air control tower ... and visit Santa, who lands from a Sikorsky helicopter.

 At least once a year we visit the adjoining air museum. Their Wings Over Sonoma County air show makes going back to school exciting.

And he loves, for some reason, the red REACH helicopters. By golly, we have sat parked for up to 15 minutes, just observing those babies parked on the tarmac. And if we get lucky and see a take-off or landing? Oh my -- such the ecstasies of delight!

So yes, we went there too, over Spring Break. Several times.

Why? Because We Are All Community

This is brief, but in support of Sunday, her family, and the entire busload of school kids who were dished a whole lotta hatin' at their recent trip to their local Dollar Store.

Please read Sunday's story, in her own words, and support her by spreading information and compassion about those who off the beaten path. The best way to fight this meaness is helping those whose lives look different from ours understand how we are all in this together, regardless of our unique and special needs.

BINGO Night Out

The whole family turned out for the annual BINGO Night fundraiser at James' big sister's school. I enjoy these events. I remember from my own childhood how exciting it was to go out at night and do something fun. It's another chance to connect with others. We get a break from routine, and have fun. Plus, there's pizza!

I also get a chance to see how James has grown. This year, he lasted the whole event in the noisy indoor gym. He recognized people and said hello to them. When his water bottle ran dry, I was able to send him to fill it from the drinking fountain with just one verbal prompt. I kept an eye on him from my BINGO table. He did very well. He also asked for some popcorn. I was able to give him the money and send him by himself to the food counter to buy it himself, again with myself watching him from the other side of the room. My friend at the counter said he did very well.

Inside I was pumping my fist and cheering these independence achievements. James was happy to have his own bag of popcorn and a full bottle of water when he wanted them. Hooray for BINGO!

What Am I: Answer

Another clue:

No?

Okay -- it's Island Oasis!

Alooooooooooooo-HA!

James and his sister are touring alluring Islands around the world this week for summer camp. So far, they have visited the Phillipines and Arruba. I'd be intensely jealous, except I get a break while they are having a great time.

So far, they've worn leis and grass skirts to sing and dance on the stage at the center, made crafts with jewels from the sea, and even done some science experiments. James has come home with a new vocabulaory word: "cool." I love it!

Bijou by Big Sis

This is his second year with the older kids' summer camp through our Parks & Rec department. Before that, he had a blast for three years of their preschool summer camp. This gives James a chance to shine in regular activities without a 1:1 aide. Many of the staff know him and, because this is James' super power, everyone is his pal.

It's also a chance for James' sister to get out and have some fun without having little brother tagging along like a shadow. Even thought they are in the same program, he's with the younger kids and she's with the older group. It took a little persuasion to get her to relax and leave the supervision to the camp counselors, but things seem to have settled down well.

They get a little adventure and excitement, plus social time with their peers. I get some serenity. We all get to pretend we've been to an Island Oasis. Who knew the community center could be so many things?

Earth Day / Farmers' Market Returns

Happy Earth Day 2012!
Perfect day for our local Farmers' Market to reopen for the year.

A rather festive start to the day

Mmmmm, rosemary lemonade and local orange natural iced tea!

Garden Club plant sale

Goodness can be tasty, in more ways than one!

There was so much to see: baby chicks, TONS of fresh veggies and flowers, honey, eggs, pastries, and regional good cooking. I bought a few dahlia roots and several salad and vegetable starter plants for our garden in the market, then drooled (figuratively) over the lovely offerings from the Windsor Garden Club's Spring plant sale. The Earth Day event had a nice turn out for vendors and we got a few freebies, especially from the Whole Foods grocery store one.

Good thing we got there early, and got our sour dough ficelles and pain au chocolat from our bread lady before she attracted a really big line. Both kids ran up to her table crying, "It's the Bread lady! Hooray! Hooray!!" I managed to walk the market once before getting distracted by all the fabulous plants on display.

At one point I thought I lost James, until I thought to look for his where the band was setting up. Yep, he was *right* by the drum set, which was going through a sound test. I had one woman ask me "Is James here too?" I said yes, and she must have seen my inability to ID her because she very graciously introduced herself as his school's librarian. James had no problem recognizing her, shouting out a cheerful greeting.

Everyone is so glad to see the sun and get outdoors again!