Extra Sensory Days

 Yesterday and today, both my son and I have experienced what I think of as extra sensory days. For myself, this means I have no tolerance for interruptions of any kind and go through the day (with things constantly going wrong) feeling hangry despite not being hungry. I fix one thing and two more things break. I am thirsty and water does not help. I find a moment of calm and James comes out with questions about King Jong-Un, 9/11, WW I. and how to remove a child-proof cap from his meds. Also, to tell me he did not try texting people at 4AM and why is he being blocked on his phone?  Ahhhhhhh!

It started when I had to take James with me to my morning eye appointment, because school's out, this was the earliest I could schedule, and my eye sight's been wonky, even with newer reading glasses. James trailed me in, not very happy to be rousted out of been on his summer vacation for this. He kept sidling down hallways when he should stay put, stopping in said hallways and blocking others when we moved to the next exam room, constant verbal stims that included some swear words, and finally backed out of the room in the middle of me having a light in my eye and having to remain still. Mama Spidey-sense is a Thing. I felt like a drill sergeant by the appointment's end.

The staff, were all wonderful and understanding. No one was cranky or raised their voice. They were calm and extremely kind. I cannot say enough good about them. Especially when James informed me, back in the parking lot, that he left his drink cup in the last exam room. Grrrrrrr. No worries - it was up at the nurses' station when I went back and everyone was upbeat about its being reunited with its owner.

Back at home, the cats were punks and tested gravity with a vengeance and one escaped to the great outdoors, grounding us until he returned. Buh-bye plans to meet up with friends at the bowling alley. The fix on the van's a/c broke and then required a more expen$ive repair. The replacement part turned out to be faulty .... Buh-bye planned road trip and weekend gathering with friends. 

James has been extra bothered by noises I can barely hear and routinely tune out (barking dogs. kids on bikes, and leaf blower blocks and blocks away). It's left him in the yellow zone and more prone to swearing. I still have to semi-barricade the side door to dissuade him from going into the neighbour's yard. I feel it works better than me constantly verbally telling him to leave the door alone.

We are hunkering down at home. Thankful it's ours and quiet today. Thankful for the repaired a/c in our van and a very honest and trustworthy mechanic. Thankful for my mom, who picked us up from the mechanic's one day and brought us back the next. Thankful for understanding medical staff. Now I think the only thing we might need later is ice cream ...

Not Eating ... Again

Another week of behaviour issues. Another week of being thankful James is at a school prepared to deal with them and James as a human being. The Staff and I are pretty much in agreement that James is not eating enough. Again.

Even as a baby, James had a half-hearted interest in food. It was almost as though he ate to be polite. Then stresses and sensitivities arose, complicated by periodic, horrific bouts of constipation ... and James decided to stop eating. BioFeedback was a blessing, and helped get him back on track.

I sound like a broken record, but the last two years have been incredibly stressful. James now takes a bite or two of his food item, then tosses it. He is growing like a weed. I have stocked snacks that he will eat that have as much protein as possible. I provide meals regardless of whether or not he admits to being hungry. And still, this persists.

To the people who say "they'll eat if they get hungry enough" - I once thought this too. Then I had to deal with people who have eating disorders and special needs.

We will be moving again. Hopefully it will be a more permanent and grounding move. We will get the nutritionist back on board and I hope to brainstorm successfully with the school and ABA to nudge James back into eating more healthily. The struggle is real. I remain hopeful that solutions will be too.

Flies

We are cleaning and moving house. The worst part for James was not the disorganization and tossing of items, as I'd feared, but FLIES in the house.

Oh, James and FLIES.

His reactions are much calmer, but FLIES stop everything for him. Unfortunately for him, it is high summer, and many FLIES are out and about. They come inside as people, boxes, and furniture go in and out.

For many years, I have been chief arachnid and insect wrangler in the household. James therefore would get a roll of newspaper and hand it to me reverently, telling me: "You can get that FLY over there. Look, come and see. It's right HERE." And I would be taken by the hand and led to said FLY.

After the first day, I was DONE with FLIES.

James rose to the occasion. He got strategy, and slammed a window shut, trapping several FLIES between the pane and the screen. He became best buds with Bueller, the FLY-eating wonder cat. He Chased them down patiently and quietly with wads of paper towels in his hand, and GOT the FLIES!!!!

Every day, there are new FLIES to discover, hunt, and eradicate. We will be so happy when there are no more FLIES in the house.

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!

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:

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 ...

A Real Hair Cut

Guess what we did last weekend?

A real hair cut, with no tears, sitting in the chair the whole time, minimal distress, and some 11 year old street cred. Photo coming soon.

Thank you, hometown Great Clips hair salon! James picked you out and you made his day. Still making his week, in fact.

I have to give a big shout out to Ricardo, who didn't miss a beat and made James feel like a typical 11 year-old guy. His trimming technique around the ears was pure magic to watch.

One more of those "OMG, we're finally here" moments. Victory!

All Over Presents

Predictably, videos and books were the biggest excitements for James, followed closely by a Joe Cool shirt that we can't wait to show off at school. Big sister's keyboard with sound effects, however, was a strong attraction:

Pineapple Express '14

What else happened in December ... oh yes - rain! After too many years of drought, especially after this past Spring that almost never was, we welcomed rain from a Pineapple Express.

I think we received some delayed water shipments, because the storm on December 11th dumped so much on us in a short while that roads, freeways, storm drains, and creeks were overwhelmed.

From Kent Porter in the Press Democrat

For the first time ever up here, school was cancelled for both kids/districts. Really, it was because the roads were compromised and people weren't sure about landslides later in the day. Regardless, I am so glad James does not take the bus. Some kids were waiting in the rain for 30 minutes for buses that never came - that's how close his school district cut it.  I actually called him in sick first, because his lack of eating after his procedure plus his anxiety over getting spots of water on his clothing just made staying home the better option that day.

James' sister's school waited too late, in my opinion. I was almost in the car with her before getting their cancellation message. Some parents had already dropped their kids at school and had to go back and get them. Oh, there were MANY unhappy parents that day ... which is why both districts announced that same afternoon that schools would also be closed the next day (Friday).

While I was glad my husband could be home with the kids, it was a bit sad to be the only one in the family who did not get a Rain Day off. Still, I did get an earlier start (and finish) than usual. I even got to do what the locals do when we get Rain -- head up to Memorial Bridge and take some pictures while sipping some Flying Goat coffee.

Memorial Bridge, under construction - yes, the workers were there & working - almost at flood stage.

On the railroad bridge, watching the park flood. haven't seen *that* in a while!

Things. in. Their. Places.

James has not really lined up toys in order, the way some kids on the spectrum do, but he has a very definite idea of what things go where and can obsess over things out of place.

Like tonight, when I made him change his seat on the way home, because there were bags in the back, where he's been sitting for the last few months (ever since he and his sister got too big to share a row in the car).

Oh. My. Goodness.

Twenty minutes of "I don't like _insert everything under the sun_" and "let me out Right Now!"

aaaaaaaaaaaaaaaall the way home.

And then he was fine. I am working on that myself.

Wordless Wednesday: Furry Pals

Yesterday I took James in for an evaluation at the Swain Center. His former caseworker at North Bay Regional Center had heard about James' wonderful social progress with his peers and discovered that he was eligible for a Social Pragmatic Skills course at the ever-fabulous Swain Center.

James remembered coming to the office from years back. He was doing well until some companion dogs came through the office and someone outside fired up a leaf-blower - then he freaked. Those are two things that make him very uncomfortable.

Even though I can tell James *wants* to like animals, their random, independent movement freaks him out. This is how James likes best to interact with animals right now:

For more images that speak volumes and to share some of yours, visit Wordless Wednesday!

Too Much Everything

James' school held it's annual carnival on campus. It was a day full of games! Food! Activities! Running! Outside! Also: Noise. Sensory overload.

Yup, he spend a good chunk of the day in the resource room.

Not feeling great about the all-day field trip to SF coming up. I had planned to chaperone, but being sick for a week deep-sixed all my PTO. I hoped to plan a strategy with his aide, but guess who has been sick with the bug we had? I feel bad about that, as this bug really knocks you off your feet and makes you feel weak and woozy for at least a week. I am very nervous about the field trip, which is in 2 days.

Now his teacher thinks I am going on the trip, due to a miscommunication. Let's see: all day trip through the Academy of Sciences, tons of noise and fun with classmates while on foot, with things he will find interesting (but which will overwhelm him at times)  ... with a long bus trip to and from San Francisco, and an return ETA of about 4pm, which is 1.5 hours longer than a school day.

Oh, and it's supposed to be hot. James melts in heat and melts down in traffic jams. Plus, when he's tired, he's more prone to car sickness.

Common sense says cancel. But it's not fair to James, having to miss out on the trip. It cost a lot of money too, which I can't get back.

I'm giving it through today to come up with a miracle solution .... failing that I will have to figure out a Plan B for James on that day. Not setting my guy up to fail, especially for something that should be fun.

Program, Interrupted

I've been trying to get James to bed for almost an hour. Normally this is not difficult. We know we are very lucky in that respect.

Not tonight, though. Oh no. James has been upset, wailing, in tears, and with a distraught face that would sink an armada of tender hearts.

Culprit?

Yup.  These are noises James can tolerate without a problem:

     

Flies sharing his space ... will freak him out every time. He hates their buzzing more than leaf blowers. That is saying a lot.

He only calmed down when I showed him there were no flies in his room and sang to him -- lots of songs from my mom and grandmother, and half a dozen Disney movie tunes.

And when I thought I had him down? Bathroom visit. We went through the whole routine again.

That fly is so toast if *I* see him!

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!"

The Precise Child's Sandwich Recipe

Ran across this over the weekend. Oh my sweet corn. It's still true. This is what I have to go through some days to feed the kids.

Grilled Cheese Sandwiches (Sammiches, per my son)

Recipe (per my daughter):
That Bread that Mme Untel uses and That Cheese that she buys; I don't know what it is, but I think it's yellow or maybe orange. She makes it on a grill and it tastes good! (Note: Mme Untel was our day-care provider for years -- everything is better at her house!)

Chez Nous recipe: Use soft bread -- I can get away with Trader Joe's whole wheat bread ($1.99/loaf) and sliced orange cheddar cheese, as plain as possible. Use real butter (ours is not salted).

(1) Heat pan; melt a small slice of butter, enough to completely coat pan's surface.
(2) Place up to 2 slices of cheese in between bread. Butter the outer top slice.
(3) Using medium-to-low heat, cook sandwich until butter browns and crisps the bottom bread's exterior. (note to self Do NOT attempt to answer email or bread will burn)
(4) Flip sandwich and repeat cooking.
(5) Remove sandwich from pan, slice in half diagonally (this is actually important), and put on plate. (6) Serve warm (or else it's no good).

... and with that, time to pack the school lunches!

Spectrum Parenting Tip: Rain With Fireworks

We live in Northern California where, compared to much of the rest of the world, we don't get a lot of Weather. That means that my son on the spectrum and daughter with sensitivity issues have not had to deal with a lot of rowdiness from Mother Nature.

About 10 nights ago, an unusual collision of weather fronts took place, with explosive results overhead (see video above; video courtesy of Michael Matson). I've been through storms like this, but not here, or with my kids. As things ramped up, both kids woke up, afraid. My daughter I could hold, and explain some of the science behind what she was seeing.

My dilemma, how to communicate with James. When he gets anxious, he tends to repeat things blindly and not listen to me. Lately, his innards start churning when he gets too anxious; if that state continues too long, he will become physically ill. Both the repeating and churning were going full force. I desperately was trying to think of a way to get through to him and explain what was going on as well as to reduce his anxiety. Autism ... visual ... concrete, literal understanding ...

Then I thought of something good to try.

"Hey, James - James! Remember Disneyland? Remember the fireworks? The bright lights and loud explosions? This is rain ... with fireworks!"

And it worked. Holy cow!

Boom! From right outside our room at the Letter Q Hotel.

For him, the storm then went from scary to Disneyland fireworks, with rain, right outside his very window. What an strange reason to be glad the kids have been to Disneyland so many times. But I'll take it.

The storm was a good one, by the way. We had lightning strikes a few blocks from our house. Power went out, and the house shook. A few times the bolts and thunder were instantaneous and huge. I was up for a good 2 hours, which is freakishly long for a T-storm in our area.

Both kids went back to bed after an hour, as soon as the main show was over. Even the car alarms going off didn't really bother them. After all, they're used to that after a fireworks show, and that's what they do when on vacation at the Letter Q Hotel, right across from Disneyland.

Magic Marker Monday: Caterpillar Craft

Finally sharing the caterpillar craft that James made back in February at a friend's birthday party. It was a nifty little side activity for those who were tiring of running around and giving the backyard jungle gym a workout. It fit in neatly with the theme of butterfly thingies:

Spiderman, says you? Sparkly antennae, says I.

Butterfly jumpy house.

Normally, this is the effect most caterpillar crafters are shooting for:

Thanks, New York Cares Art Explorers, for the great demonstration!

Then, there's James. I really do wonder about his perceptions, sometimes. Times like these, I *really* wonder how the world looks to him.

James was delighted with his project, and played with it for weeks after. It flew, was naughty, and sometimes decided what book to read for bedtime. And really, what more could you want?


For more great masterpieces or to share some of your own, visit
5 Minutes for Special Needs for more Magic Marker Monday.

                              

Worries About "Wandering"

Oh my.

Someone's been peeking at our life again. Read this Snagglebox post on Wandering that I spied on MyAutismTeam.com and yes.

Yes, yes, oh dear heavens, yes. That's us.

At the supermarket. In the parking lot. At the beach. At the park. During exciting events at our Town Green. At school. At night. It could happen, and so I am worried.

I dress James in the brightest possible colours so I can track him, especially from afar. In parking lots I tell him specifically where he needs to go before he opens his door ("Stand on the sidewalk" is much more effective than "Don't go out into the parking lot".

If we're in a new store he stays right by me -- I get him to do this by having him help me push the cart or look for specific items near us. I really can't turn my back on him at the beach. We stopped riding our bikes in the park because it became too dangerous. I've lost track of him for minutes so scary it seemed like hours at the Town Green.

School interprets his wandering as a toss-up between a behavioural issue ("testing behaviour") and not wanting to be at school and has recommended he be pulled into a program away from mainstream kids. While I can see where they are coming from, James would not be getting any tools out of this solution that might help him to better be able to express how he's feeling or communicate what he wants. It makes total sense that he would wander away when overwhelmed, but how to safely manage this while not wrapping him in cotton wool has been a familiar dilemma.

And when I discovered he'd started awakening at night at random times and would leave his room, I could not sleep well myself at night. For the past two years I've been largely sleeping on the sofa out where I can see and hear him better. After months of prompting steps to get him resettled, he is starting to manage to self direct himself back to bed. It's not 100%, so the sofa and I are still good friends.

As far as information from his pediatrician about this, we've not heard a peep from any of the four he's had since birth. It would be nice to know how other parents are coping with this silent worry.

James at the beach this New Year's Day.
I tracked him as he wandered.

Special Exposure / Wordless Weds: After School

Both kids are back in school. Big changes this year! Big sister is an upper classperson, with a different start schedule and change-ups at recess and lunch. She is in a room with lots of new classmates. Her school changed to a charter, with emphasis on math and science, which is right up her alley. She is going to be a Big Buddy to some lucky little kid, instead of being the Little Buddy.

James is on a campus he's attended before, but for a special day preschool three years ago. At this second grade level, aides are not available before or after school, so we are coping with being more self-directed at these times. Class is much more structured than he's been used to over the past year; it's not the one I advocated for. And its a challenge to have him use his voice appropriately. I have a meeting tomorrow with his services coordinator. Yesterday I got the notification in the mail about his 3-year assessment, and I am contemplating what this means for James. It's hard to play chess when I am not sure of which pieces I have, and the rules are hazy and not fully formed in my brain.

So after yesterday's pickup, we hit the library and then walked across the Green to Yogurt Farms for a frosty treat. James lost his temper and yelled, almost crying, when I told him he needed to wait his turn in line to get his yogurt rung up. He'd held it together all day so well, but that was one thing too much. He howled and melted right before us all. Thank goodness he was able to get to a seat and remain mostly seated, occasionally stating loudly "I am very angry!" and making his dinosaur noises for the two minutes it took to reach our turn. Then we skedaddled across the street to the park, and life took a much calmer, better turn:

For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.
 





               and ... Wordless Wednesday

Paging Dr. Mom ...

James had another awesome session at school yesterday with his favourite substitute aide. Unfortunately, he somehow picked up a ginormous wood sliver. That puppy was solidly embedded in his palm. As the school personnel are legally not allowed to remove slivers, James requested to self-medicate by using the iPad in the O/T room until pickup time (about 20 minutes), when Dr. Mom would be available for an afternoon appointment.

First I tried squeezing, without results. Then I tweezed of the fattest bit, closest to the opening. I had to go after the last bit with an Exacto blade, and that's when James objected (luckily, after the fact).  I was able to the extract that last devilish bit and slathered the wound with Neosporin.

Just call me Dr. Mom. I graduated by the seat of my pants from the school of Hard Knocks. I am working toward my degree in Autism by the Skin of Our Teeth.

"No Bandaids!!!"