Indepedent Steps

 James made a PB&J this weekend. All on his own. I am excited -
the quiet deep excitement with the word "YES" playing over in my head. 

At was all the more terrific because he did it when he was frustrated. The pizza delivery he'd earned was, shall we say, messed up on the delivery end. He was hungry. I suggested he make himself a snack, something like he'd been practicing in ABA sessions, like a sandwich or quesadilla.

He said "Peanut butter and jelly? um, okay - yes!" Out came the jars. He found the bread and pronounced it "good!" and proceeded to make his sandwich. He needed a little help with cutting it diagonally, but that's it. No prompting, no fussing, just calm and confident sandwich making.

We celebrated by visiting Diagon Alley via the first Harry Potter movie. James faded out soon after that scene. I think the shouty Dursleys were really his favourite part.

It hit me again this morning, as I was doing errands. Driving the van on a clear sunny autumn morning, where the flaming trees showed bold against the blue sky, yet the sunlight felt warm and mellow inside the car. Again, the quiet "Yes!" and then "Thank you". Because we are here again, moving forward. James is using life skills we've been working on.  

The Little Things That Drag Me Down

It's been a week ... of increased eloping, use of the middle finger, trying to peek in the neighbour's windows, and BM woes. I don't have a concrete "why". This seems to happen periodically. 

I have been sleeping in the living room, to make sure he does not leave the house at night, and driving him to summer program because I the morning routine must be rebuilt (again) and I want the rest of his day to go as well as possible. 

He is riding in the front seat because he kept popping his seat belt and making a game out of it. Much harder to do in front. After the initial pushback (which got loud and somewhat physical), he now cheerfully hops into the front passenger seat on his own. I still have to check his buckle as I drive.

As I type, I have the door next to the neighbour's double locked, with a big basket of laundry on the floor in front of it and doorknob jingle bells on the outside door handle, to make sure he gets the message to redirect to a different activity and alert me if he goes for the door anyway.

His aunt has been marvelous, patiently talking on the phone, answering texts, and getting him out of the house and trying fruits again. ABA will be thrilled. It does take a village.

And the laundry - there has been so much enzyme cleaning, cleansing ... load after load (thank the universe I have in-home laundry and we are not on rationed water). I have to carefully time the drying because we keep having heat waves and our home has no a/c. 

Behaviour outbursts from anxiety that comes from visits (that he tells me he wants) with his father, constipation, boredom, and hormones.

I breathe, try to fall into calm, and get through these moments. I am lucky I can recharge in quiet moments with music, time in my garden, and friends.

Sometimes caring for someone with autism isn't dramatic, but instead a constant drip of small things that interrupt trains of thought and tasks attempted. Both can be emotionally draining and exhausting.

End of a 3-Day Weekend

Today was a good cap to a longer than usual weekend, in which Friday turned out to be our day to lounge in pajama splendor, not leaving the house at all day, Saturday change up for chores and errands, and today a nice balance of slow and easy and to-do items checked off.

We finished up our 2-week participation in the Kinesiology's Gamified activity program by reporting in person to redo our initial tests and provide feedback. James had soured on this activity and he asked for Doritos afterwards, to which I agreed. Negotiations! Progress!

James also did his laundry, with minimal prompting, and emptied his garbage on his own initiative. We talked a bit about music and family. He talked the cats and petted Sassy when she went up to him and meowed.

This does not sound like much, but after the last several years it's more than a little bit of heaven. 

It's the Little Things, Again

James had a great day yesterday - he made the van pickup, had a great day at school, and (after initial resistance) had a great ABA session. We took a victory trip for chocolate chip cookies and Little Caesar's pizza. He had his down time. He was a good sport and powered through the group Kinesiology exercise activity, even though it was a physical challenge for him (walking on all fours - at over 6 feet and in our cramped house - yeah, this was tough).  

The only downside - he did not want to go to sleep. I finally pulled the plug on the internet shortly before midnight. Even then, he kept popping out of his room to the bathroom and back for another 10-15 minutes. After a night of my sleeping in the living room (to keep an eye out for any residual behaviours), it was time to get up. 

James did a good job getting up and following along with our morning routine. What helped was communicating over walkie talkies that he won at school for earning points and ... being allowed to discover how the frother worked. 

Oh my, that smile! He was really tickled to try it out. I think I see a lot more frothed morning coffee in my future.

When Remote Is Better

So, full disclosure: my mileage for most parental and family things has so much variance (how much variance?) ... so much that one can call Ollie-Ollie-Oxen-Free over to me at the extreme range of Autism Lifestyle - that's how far out there I am.

So, the shelter in place as a result of COVID-19 has been - kind of a godsend. My life has SLOWED.

• I am lucky to be able to work from home. 
• I don't have to spend my lunch half hour dashing home to get hime ready for school / established at home until I finish my last couple hours of work. 
• I can flex for meals on-the-fly for us both. 
• I get to see what he is doing for school and assist at times.
• My breaks are in my own garden and it feels like a miracle of peace. 
• I can set up an office and work/take calls on my back deck and nature watch. 
• It feels so healthy. 

I see benefits for James as well:

• The paper in his mouth stimming has almost vanished.
• Escapes to the bathroom are greatly reduced.
• His mornings are more relaxed while getting back onto a schedule because I don't have to wrassle him awake / dressed / breakfasted before getting him on the bus in the mornings.

I give a million kudos to his teacher and support staff at his school. They have been consistently upbeat, accessible, calm, kind, and encouraging. They make our world a better place.

This Year Is Different

Look what happens, when your special needs child is in the right school and you are not having to fight for inclusion, proper placement, and education. Also, you finally have a place of your own again, fires be damned!

You can have the time and resources to buy your child a bed, so they are no longer sleeping on the floor, because they don't want to fall off their twin mattress that has grown too small over the past, chaotic year.

Silver lining for being evacuated due to a catastrophic fire last month ... I discovered that James could sleep in a bed, and well, if it was large enough. He adored snuggling up in the fold-out queen bed and was able to snooze through bathroom or kitchenette use in our hotel room.

Now he has a queen bed of his own that he helped pick out. I bought the frame on sale from a local store and purchased the mattress online. James also picked out his own bedding.

A big shout out to our friends, who helped put together the frame and un-spring the mattress from its VERY heavy box! You both are awesome.

Sleep well, my big guy!

Saturday Morning Life Snippet

James and I both slept in this morning. Yesterday was ... um challenging. TWO car fails. School bus fu. Work. It was looking for a while that my planned evening out in SF to attend a reunion of the KFOG morning show was going to go down in flames too.

But thanks to some awesome co-workers and my mom, who is awesome too ... plus a good mechanic and respite person with strangely absent traffic ALL the way down to West Oakland (not even on 80 in Berkeley, and I can't remember the last time that happened at 5:30 PM on a weekday) and insane luck of someone pulling out of a parking space in front of me as soon as I entered the BART lot ... I made it! And it was so much fun. I flagged my first Lyft ride and shared with two other Fogheads, who immediately felt like old friends.

Photo courtesy of Renee and Irish Greg's PopUP

So this morning, I am enjoying being where I am. I played with the cat, made scones, watered the plants, sat in the sun with my morning coffee and enjoyed it being the weekend, which includes chatting with James when he got up. He is puzzled at this thing called 10@10, which is grooving from my laptop, but willing to humour me. It's fun to remember who I was and to be a bit of the person again with James. It's fun to remember a time when life was easier and bring that a bit into the present.

Airport Run

"Can we go somewhere?" is a common James question these days.

On early evenings like tonight, this is still our go-to spot:

For those of you at home who answered "Airport" - you win!

Santa Rosa still has a pretty sleepy little airport, despite recent growth. The REACH helicopters continue to be fascinating. The blinking blue and red lights are fun, and when the sun goes down, the colours in the sky and surroundings are magnificent.

We watch the planes take off and wonder where they are going. We wave them goodbye and tell them we hope they have a good trip. It feels like our family airport.

Then we take the back roads for the short trip home.

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.

A Little Vacuum Miracle

Another "first."

The old vacuum (I cannot even remember how old it was) has finally died a slow, ugly, noisy, smelly death. I knew it was time to give it up and get a new machine when the old model started channeling the Exorcist by spewing out what it had just tried to consume creating hazy, odoriferous mayhem. I put off finding a replacement for as long as I could.

Over the past dozen years or so, vacuuming has become a traumatic event - for the kids because of the noise (it would literally send James running, screaming as he bolted in panic to escape the noise) and for me because it turned the chore into a horrible beat the clock kind of ordeal that had to be planned and frantically executed in a small amount of time when the kids were not around (which got even more challenging once I went back to work full time and the vacuum started breaking down and needing constant fixing).

Even opening the closet and seeing the red instrument of malevolent cacophony would set of anxiety attacks for James, who would then need constant reassurance that that hideous thing would soon be safely back behind closed doors. Unplugged. No really, I mean it.

So, new vacuum. I debated endlessly the merits of vacuums. We have cats. There is dirt galore. Crumbalanches have been known to happen in areas near the TV. I discover that lower decibel vacuums for pet owners in a modest price range are now a thing. Excitement! After hours of research and second-guessing myself, I schlepped off to Costco for a new Shark. I've never bought one before, but it got good reviews online and was on sale.

As I was eyeing the two Shark models on display, an older gentleman paused his cart alongside mine and regarded me with faint dismay. "Oh my, no. You are thinking of buying the Shark?" Out whisked a business card. "Forgive me, but I run a vacuum repair shop in town. You do not want a Shark. Those things come in for repairs? They are useless. Just a big metal paperweight. I am sorry for for interrupting but I just could not help myself. You can call the number on the card if you need anything." And off he sailed, as gracious as all get out.

Okay, Universe, I can take a hint. Hoover Wind Tunnel it was.

I got it home, assembled it, and turned it on. Oh my goodness - it really is a lot quieter!! And it does work well. I just have to continuously empty the canister. That's okay, though. It's easier to get to the canister and overall it is much lighter and easier to maneuver than the old one. It was more on sale than either of the two Sharks. My favourite feature? Auto-retractable cord. Yes!

The mini miracle? James isn't scared of it. He even came out to see how it worked. Both hands over his ears and bent over with anxiety, but I actually think he will get more used to this. He even tried pushing the vacuum himself. This is one of the times I am doing a victory whoop and dance inside my head. Yes!!!! We are just that much closer to mastering another life skill.

Which is good, because our mastery with the mop still needs a LOT of work. But that's another story ...

This Video Pretty Much Says It All ..

If you've been on social media, you may have seen this video making the rounds:


What you may not see is the extended post from The Mighty's website. And yes,

Because of my kids, I've learned the little things in life are often the sweetest. I would not have experienced that so exquisitely without them.

U is for Universe

On the upside of some extreme house cleaning: We have found the letter U!

I knew it was in there somewhere. Somewhere turned out to be in a rarely used bookshelf in the dining area, buried under cassette tapes and unused jewelry gift boxes that the kids loved to collect.

This has made James so happy. He truly is a Mr. Thing-in-their-place. Universal happiness, brought to him by the letter U.

Letter to Santa

Oh yes, James still believes.

He has been talking and obsessing over the Cars movies from Pixar. I think I've finally convinced him that the third movie won't get here until 2017.

The closer we get to Christmas, the juniper James gets about Santa and will he bring presents? It get very hard to focus him on homework. He would much rather look at Christmas lights.

Tonight, I got him to write his letter to Santa after math and reading. We posted it at our Town Green. It was a win-win winter evening!

  

Where We Live

I'll never get tired of turning a corner and finding things like this:

... and that's just this week. We live in a wonderful part of the world. I am glad we can share this with our kids.

Slow 'n' Go

It's winter. Holidays for me are over until May. February, a typically gloomy month, approaches. My energy is long gone, but work, obligations, and challenges remain.

On the bright side: had some success with James, using images from his biofeedback sessions. I think bringing out the box with the home enema kit in it was the stronger motivator but having the biofeedback to talk about made a really good start.

Trying to keep positive, as I keep trying to move forward.

Thought for This Rainy Day

found on Pinterest. 100% accurate.

Yes, I can. And this is what I imagine James says a lot to himself. 

Because he is talking, in a regular classroom, and partaking in learning and doing. So much more than we were told to expect he could.

Never give up believing in your child and what they can do.

Being Present

So, getting up at way-too-early ack emma and driving through early commute traffic for 65 miles for a 1-hour appointment, reversing it, then going in to work can be a bit rough. But oh the benefits of a therapy that you can actually see helping your child! More on that later.

For now, some images of what you can see by showing up and being present:

All taken with my little point-and-shoot. It's the little things.

The Autism Ticket

I saw this today and immediately my brain went to Autism ... more specifically finding out one day that you are now an Autism Parent, on a ride for life.

My next thought was "No, I didn't 'buy' that ticket, I was kinda handed the ticket." But that's not quite true.

James' Dad and I both knew we were definitely in the older edge of prospective parenthood. I've even been called his grandma (yeah, not fun for the ego). We both knew the increased chances of birth defects and other issues if we decided to try for kids. We agreed to accept whatever came along.

So yeah, I guess I did buy that ticket after all.

And the ride? Heart breaking. Lonely. Disappointing. Hard. Thrilling. Exciting. It's given me a new and deeper understanding of the meaning of love, and appreciation that the Little Things in Life often produce some of the best good news you could ever hope to find.

Not the ride experience I would have chosen, but it's part of our lives and I do not want a refund.

Autism Awareness: Always

It's April 2nd, and World Autism Awareness Day is almost over. I have not put blue lights out or done much writing lately, but I am awware. Every day.

Autism has punched us in the gut and wrung our hearts. It's given me a new appreciation of what I really do have, and many more blessings in the little things in life meaning so much.

• My son's hand in mine. Being able to have him tell me what happened in his day. 
• Conquering hopscotch. 
• Watching him write. 
• Hearing him read all the road signs or playing the alphabet game on the way to school. 
• Finding out he chose to play football with his classmates at free choice, instead of playing games on the computer. 
• Watching him "conduct" music from the very back of the multipurpose room during his sister's chorus performance. Having his help with household chores.

• The pat on my back and whispered "It's okay, Sweetie, it's oooo-kaaaay!" when he sees me upset or sad.

• The Trader Joe's lady, who waits for him to come visit with her after he finds the Peanuts character in the store. 
• The boys in his class who hang out of car windows and yell "Hi, James!" during after school pickup as we walk to our car. 
• Seeing peoples' faces soften as he skips past them. 

All special things I might have been too busy to notice, if I had not been made aware.

What would I hope for others to be aware of? Please don't put people in an autism box. Please don't get too caught up on test scores and check boxes. Please don't see a price tag or something dangerous.

Listen to the parents. Take a good look at all the little things, and be aware that they matter, and you can help make them happen.

Help us. Help us find answers, solutions, and a better future together.

One thing I will be doing, is walking this month to raise money and awareness for Autism Speaks . Please help, if you can, and thank you.

Small Kindnesses Make A DIfference

The kids and I hit Trader Joe's yesterday morning for the weekly grocery run. I love Trader Joe's in so many ways ... their low prices, great food, and convenient locations all match so well with our hard-to-match lifestyle. I think of them as a family partner.

After becoming a parent, they won me over in a whole new dimension -- namely their crew members' wonderful way with kids in their stores. The crew members for the store closest to us were incredibly understanding when child #1 became unexpectedly ill on aisle 2; their "things like this happen, please don't worry" response was a very relieving surprise. When they still handed out balloons, they would accommodate balloon colour requests like they would be at Nordstom's.  They *tried* to get me to see the funny side of my toddler child #2 swiping a carton of eggs and turning it upside-down just out of my reach and the cart (and refused to let me help clean up or pay for it).

Several crew members are familiar with both kids by now. If I make the weekly run by myself, they ask where the kids are. One woman asks specifically after James. His happy hunt through the store, looking for the Peanuts plush doll of the day makes people smile. When he finds the character, he runs up to the front desk and reports its location for his coveted prize: a red TJ's lollypop. Talk about motivation to speak a sentence clearly!

This week, however, he was unable to find Lucy, and he began a semi-frantic, howling meltdown, right as I was in the checkout line, trying to check my list and make sure I'd gotten everything. I got him to calm down enough to ask a crew member for a hint. They sent someone to look for her in the store. When they discovered that Lucy was AWOL, they hid Charlie Brown, and gave James' sister a "cold" clue for where they could find him. She then took James on another search, which had a happy conclusion in the freezer section, amongst the cookies.

I know they would have done this as soon as someone brought it to their attention, but these people also seem to understand how something not being in its right place was driving James into a panic. Because when his big sister told him "Lucy's on vacation," they said "That's right, and she'll be back later." Immediately, James calmed down, and afterwards I did not hear him asking constantly where Lucy was (which is something he does when someone/thing is out of place in his world).

And after a tough week (like this past one), small kindnesses mean everything.