Fire Season, Power Outages, and Autism

September is winding its way to October, Pumpkin Spice is out in full force, Halloween decorations are sprouting, and California is officially in Fire Season.

New this year - Planned Power Outages from PG&E, who can't figure out how else to stop their equipment from causing devastating fires. We pay more for this extra disservice too!

So, James for several years has been sleeping with the lights on. He hates it when the power goes out.

Then the Tubbs Fire happened and we had to flee in the middle of the night ... a couple of hours after the power went out. Less than a week after we had to move out of the only home James knew.  Now power outages are even scarier.

We have social stories, plans, and some cool items from our Nana that do not need electrical power:

Dimmable Warm White Light & Color Changing RGB Smart Atmosphere Lamp, from Amazon

 

 LED Switch Light, available at hardware stores and Amazon

James is still very anxious about the possibilities of losing power, especially during fire season. This is something I do understand, having been caught up in the Oakland Hills Fire and losing most of everything I owned and my childhood home and neighbourhood as well.

This is the price we pay for where and when we live. Most of the time, it's wonderful. For the next 6-8 weeks, however, it will be a nervous time.

Disclosure: I was not paid to post these items. I uploaded the images and links to share as a resource idea for other parents in need.

Get Back Up Again

Thursday morning, James was a shaky wreck. We missed the bus. He could not focus to eat breakfast. James usually pops on his clothes, including shoes and socks in about 5-10 minutes. After an hour of waiting while he was "getting ready", I went and got him (which made things more fraught). He was close to a full-on panic attack when I pulled into the school parking lot. I remained calm and walked him to the office, where I explained in a low, calm voice what was happening.

"Thanks for letting us know," I was told. "We've got this." The woman was speaking as calmly as I was. Her eyes serious. She got it. I love this school.

No calls or texts, the whole day through, even though I had my cell phone out on my desktop, expecting them at any minute (because this happened repeatedly over this past school year). James took the bus home, and arrived in good spirits. He took being swooped up, as soon as I got home, to ABA at a nearby park in stride. Although there was no actual ABA services (there was a time misunderstanding) we hung out at the park for a bit, and said hello to some of his favourite counselors at the Boys and Girls Club.

We picked up pizza and went to go look for deer at Deer Hill North. We hit the deer motherlode: eight deer in assorted locations, ranging from the sweetest little spotted faun to full grown males with great, velvety antlers.

Home again we went. James settled down and ate some pizza and drank milk. Then parked himself alongside a gallon of vanilla ice cream. Normally I don't condone this, but this guy needs to put calories on his bones.

I read the daily notes from his teacher. James took more breaks for quiet time than usual and only had one point in the day where behaviours broke out. Otherwise, he participated. Such a difference: I was getting reports about his day on relevant topics. James went to school extremely agitated and returned calm. No undertone complaints about the staff or school (although there was some of the usual litany about past people that are associated with bad memories).

As I sat in the armchair in the living room, he began to chat pleasantly. Eventually, he asked about the Dad in Matilda. I picked up the book we'd checked out of the library last weekend and said "Hey, let's see what the author says about him."

After noisily resisting any reading whatsoever for over a year (broke my heart - I love reading), James listened to me while I read to him. I was hugging myself on the inside.

Two chapters later, my eyes were wanting to snap shut. I apologised and said I had to turn in, but we could read more tomorrow. "Okay, Mother," he agreed, and strolled off down the hall to bed.

I went to bed grateful and thankful. We were back up again.

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!"

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!

Resisting

Things are a bit better at school, and I am cautiously optimistic. A couple of longish discussions with his aide about triggers and possible tools to use to encourage better behaviours and choices at school seem to have helped.

It is very true that if you try to shush James (whether with pictures, hand signs, or verbal cues) in a classroom, it's rather akin to throwing gasoline on a fire -- it triggers both anxiety and defiance, rather loudly too. It is true that afternoons are some of his toughest times to hold things together. James also does not function well in unstructured time.

So his aide has created some visual tools to help him understand what activity is coming next, and how much time it will take. James is starting now to want or need things neatly boxed and defined more so than in the past, and this seemed a good thing to try to keep him focused and involved, rather than defiant. I am so glad he has his aide to help him through this tough transition to third grade.

I have noticed over this summer that James has started resisting things more, especially activities outside the house. I used to be able to get him to go swimming in the pool with his sister and I with a minimum of difficuty. Not any more. He used to love going to the grocery store with me. He's become less enthusiastic about coming along and often asks now if he can stay home. How about a trip to the Farmers' Market? No thank you, now.


I'm not giving up on getting him to go out. Today  we were treated to an outing all day at Coppola Winery's pool. "I don't wanna go," was his cry. I bribed him with his iPad and he came. He goofed off and talked incessantly, once we were established under some umbrellas. This made it a little harder for me to relax, but I did enjoy the experience.

James' sister swam like a fish. I got James into his suit and took him into the pool with me, because this year he did not want to go at all. The water was refreshing and helped cool him down. He started to cry, however: he didn't want to get dunked under water, he did not want to be splashed. He clung to me and told me that he had nightmares about his (up until now) favourite Baby Einstein puppet characters.

Ah, so that's why you've been getting me up every house on the hour at night, lately.

So I spoke soothingly to him, and gently rocked him from side to side. He did grow calmer. After we got out, I wrapped him in a couple of towels, to help him dry off. He refused to go in again, though.

James' Dad thinks the resistance and defiance are normal developmental milestones. He's right, but I am always wondering if there isn't also something more going on that is related to autism that I am still trying to decode.

Anxiety Ante

We're dealing with something new with James on this trip: anxiety ante. There has been more repetitive verbal stimming, trying to sit on his head, and throat clearing than usual - all of which are his typical anxiety coping habits.

I am discovering the next level up of anxiety-triggered behaviours for James seems to be: accidents. He's slipped down the stairs, bumped his head, burned his finger, and scraped his ankle, each of which set off a bout of crying and fixation over the pain, and loud, repeated demands to "rip it out/off!"

While all this raises my blood pressure, I do know that, once over the initial shock, James is quite capable of tolerating a lot of things. So I try to listen what he says, administer something soothing, and hold him and tell him that yes, he got an owie and it will hurt for a while, but then he will feel better. Usually I add "And be more careful" as a chaser. What the heck - makes me feel better.

The first aid kit and ibuprofen have been well used on this trip. And good golly, I think I can beat Superman in the "nerves of steel" department, because we're all still alive and relatively happy. And in one piece, because that is important.

Just this morning, James threw me a new one. Throwing open the door to the porch, where I'd been enjoying a morning view of ocean and quiet, he announced, crying, "I have a buuuuuuuuuump! We need to take my red tooth OUT! NOW!!" Fifteen minutes, a damp paper towel, ibuprofen, and a cold yogurt squeeze up paper, and I was pretty sure the source of the misery was being away from home and (for the record) a small bump on his tongue. We had a small interlude of quiet with the iPad ...

Seconds before the ill-fated bathroom break.

And then he needed to use the bathroom.

I could hear the the drama that ensued below after water somehow mysteriously got on his pajama top. Between the wailings, I prompted him to just change his clothes and come back up here. This is why I pack extra jammies and underpants. As I type this, he's now wearing his tractor jammies, sitting in a chair and getting the piggies in Angry Birds, like nothing ever happened.

And now, more coffee, and perhaps ten more quiet minutes on that porch.

No Matter Where You Go ...

We're on the road again. Not our usual summer trip to LA, but a trip south to the beach to visit with friends.

James was not happy in the car. This is our first long road trip in the "new" vehicle (a Mazda 5), and i think he felt the road much more in this smaller vehicle than our Toyota Sienna van. The heat, traffic, and road construction did not help, either. Makes me glad that from an early age both kids were racking up road trips, otherwise I think there would have been some issues with car sickness.

I'm faced with a familiar dilemma - finding a balance between stretching James out of his comfort zone, giving him new experiences to build his confidence, and not overwhelming him into an anxiety meltdown. As this will be a short weekend trip, I am not too fussed.

The packing and getting ready to go are always the worst part. I am not only packing and doing daily routines, I am cleaning and prepping against the time we are gone so we don't come back to an ugly mess. And frankly, the toughest part of packing is trying to fit the pantry and fridge essentials into the car. Because the kids are such picky eaters and I want things hassle free on vacations, relaxing meals means break open the cooler or bag for familiar foods, rather than eating out. They also tend to eat better too and James' digestive dynamics are that much calmer, as a result.

With the iPads, packing games, toys, and videos are no longer necessary. I have a pack of cards and a mini Connect 4 game and we're good to go. We can always find paper & pen for doodles and hangman. My daughter took over packing lists and oversaw clothes packing for herself and James. What a big helper my girl friend is! I've learned to pack a core cadre of OTC meds: Miralax, liquid ibuprofen, melatonin drops, liquid Benedryl, Neosporin, and a small first aid kit. Baggies are my life-saving friends with this bag.

I make sure James packs his blankies, as they give him a lot of comfort in strange surroundings. The iPad gives him a good refocus point. I try to mix in new activities with some quieter time. Like last night, when we were invited to a block BBQ/4th party.

I encouraged the kids to explore and play with the other kids, trying the jumpy house and trying new foods. James was pretty good, but got tired and walked a little apart from the crowd (see photo above). Then he started to ask when we were driving home. He lay down on a driveway and said things to the sky at large like "Is it Sunday yet?" and "I love you, Mother," and then, finally "I want to go home, please!" I did get him to come over and sit on my lap for a bit, but the kids really were tired, so we said our goodbyes (looking at the ground) and came back to our vacation pad. There we had quiet time, melatonin, and jammies. Both kids snuggled down in their beds while I read them a chapter of Harry Potter and answered questons. They went on to sleep all through the night, which is rare.

Yes, taking the kids out on trips by myself can be a bit stressful, and it feels like I have to pack a ton of of home things, but it is very nice to have a change of scenery. As it often happens, the autism in our lives hammers home some common wisdom: "No matter where you go ... there you are." I hope our trips have helped James to better cope with new surroundings.

Catch Up, With Random Garden Shots

I still feel like I am playing catch-up, what with all the curve balls life's been tossing our way since last Fall. While some things have settled down, others keep breaking down in ways that take the Mickey out of me.

When that happens, it's time to step outside and breathe, remember what I have, and let some things go ...

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.

Here I Am

              Still here.
                           Overwhelmed.
                                               Saddened.
                                                             Still breathing.
                                                                                     Still hoping.
                                                                                                         Still loving.


And finding out there are still good things to be grateful for.

Party Notes

I was watching James yesterday at a family party and woke up to a few new things I need to think through and help him with.

To my eyes, it was a small group of about 18 people. I come from a large, Irish-Catholic family on my mother's side, and it doesn't start getting sizeable until about 30 or so people show up. 18 is cozy.
   - It's not cozy for James or his sister.

I have over 40 years to learn to schmooze and pass time pleasantly at a party.
  - James hasn't. He's been to maybe a handful of parties like this one,
    which I got to experience larger gatherings at least 3-4 times a year
    at Christmas, Easter, birthdays, and any graduations/communions, etc.

I grew up with 18 first cousins, and too many second cousins to count right now before coffee. We were each others' play dates the whole summer (which was a full 3 months long).
  - My kids have 6 first cousins, 1 of whom is new and we hope to see soon,
    3 we might see once a year, and 2 we see occasionally. While we do meet
    up with second cousins who live near us, it's definitely a much quieter life
    for our kiddos.

My cousins and I were very used to lots of people in a social gathering, and we were fine not knowing everyone (we'd probably heard stories about them, which was good enough). We expected random adults to suddenly zero in on us and ask us questions, and learned how to answer and evade as needed. As children and then young adults, we learned where to go if we wanted more action and less boring grown-up talk.
  - My kids really haven't got a clue when confronted with a group of more
    than, say, 8. I watched them go into "freeze" mode until the part dwindled
    a bit. Then they were fine. They don't talk with me after about who is related
    to whom or why that person was there. So I am reminding myself that now a
    good time to talk about the people we met yesterday and give a bit of family
    history. Because that's important, in so many intangible ways. I can tell them a
    little more about my summers growing up, and maybe give them some more
    chances to talk about social gatherings and what to do at them.
 

My mother's family lived a kind of Mad Men life on each other's back porches/decks in the summer, with a cocktail happy hour that sometimes was dinner. Us kids got very used to chatting and gnoshing. I love the fact that without cell phones or the internet, everyone along a river and big forested hill just knew whose house was hosting the next happy hour.
  - It's good to see our kids developing some of these same skills,
    but I have to keep remembering that if they're quiet, it doesn't
    necessarily mean they're doing ok -- they might be overwhelmed,
    and in need of a quick touch-base.

I really would like to figure out something to help James. He is a social guy, but while he loves the people and commotion, he doesn't know what to do with himself. I saw him do extreme verbal stimming for the first hour (plus some hand flapping and jumping) and then all kinds of stunts to get attention, one of which almost broke his arm. His breathing became different and the head shaking/banging started, but he kept insisting on being in the middle of people. Again, this got better when the group became smaller and more familiar.

I refuse to bring the iPad. The idea is to get him more relaxed in social situations. Also, the idea of a quiet spot to retreat to seems moot, as he wants to be where the people are. All I can think of now is maybe some social stories about what to do at a party, talking about the party more beforehand and descussing what he can do if he's at loose ends, and normal parenting for when the stimming gets too out of hand.

This is so weird for me. I was not a popular social butterfly growing up -- I am sure I had to learn social behaviours too ... it just seems like it came more naturally (especially in hind sight).

Summers were one big, lazy kaleidoscope of random activities and soaking up social behaviours. I just accepted it as a way of life. I really miss it, looking back now. Even if we'd had more normal lives, I'd be wanting to encourage this with our kids. It's just that with the kids I have, I have to work at it a little more.

Difficult

It's challenging for me to write during hard times, like now.

Money is a constant worry. My consulting jobs have dried up and I am still trying to get payment on my last invoices for last year. My daughter is moving towards teen years and while I am proud of who she is, I miss the little girl she used to be. James will be leaving his cozy K-1 school of the past two years and launch into a new 2-3 campus next year across town. No more walking to the school just down the street from us. That's a whole nostalgic post on its own.

The hardest to cope with, right now, is losing people. Since this year started, I have had to say goodbye to two close family members, and my husband lost a long-time friend to cancer. Over the last two weeks alone, two people not much older than I suddenly left this life. One I knew from all our time hanging out at the pool -- we will miss his cheerful presence. The other is the husband of a good friend. My heart aches for her and their boys.

This friend came to our house to help us work with James soon after he was assessed by North Bay Regional Center, before his official diagnosis. That is how we started to get to know each other. We started getting together for coffee and a chance to talk as moms, wives, and friends. I admire her big heart and the wonderful job she has done raising her two boys on the autism spectrum. She helped me be an advocate for James. She helped me to find work. My husband went through a really big health scare last December. I flash back to those weeks I went through on my own and my heart goes out to her even more.

I've been through hard times. I know they won't be forever. But they can stop me in my tracks, and make it difficult to deal with everyday things.

Momming Up for Transitional IEP #3

Forget manning up, it's time to Mom-up! Time to channel my anxiety, protectiveness, and love for my Getting Bigger guy in a positive way. Oh I've prepped for IEPs (exhibits A, B, C, D) -- what makes this one different?

Well, it's a transitional IEP from K-1 to grades 2-3. Time for James to be handed off from his current team of teachers, school staff, and services staff to a largely new team, because all the campuses are cluster schools in our district. This means that all the classrooms for a grade level are at ONE particular school/campus. Because of the way our district has grown, all the kids have two years at one campus before moving on to a different campus, usually found across town from the previous campus.

Still love this shirt from Zazzle.com

I have already met with his services coordinator for next year. Luckily I know her from the time she spent in the special day preschool program, and I look forward to working with her again. With her, I toured each of the *eight* second-grade classrooms and made notes, ending up with a list of three teachers/classrooms that look like a good fit for James. I spoke with the principal and felt warmly welcomed.

With the help of the special services coordinator, I hammered out the kids' morning drop-off routine for next year. Still working on that pesky pick-up. I got some answers regarding aides for next year. I am thinking of requesting a particular aide for James.

I met both speech therapists and have already heard many good things about them and how they work together and the families. I confirmed that his O/T and APE people remain the same.

I've planned a day to visit the new campus with James, in advance of his class' "field trip" to visit next year's campus. We will also be visiting the playground throughout the summer, to get him familiar with the idea that he will be coming back to this campus next year as a Second Grader, not a preschooler.

I am still on the fence about summer school. It was pretty much a disaster last year, but I want him to still receive services, especially speech and O/T. I am trying to clarify what to ask for, and get it in writing. As usual, I am worried I will miss something crucial ... but I tell myself I am doing the best I can and that even if everything is perfect, James will change over the next 6 months and we'll be doing the IEP goals dance again.

IEP Goals -- there's a new twist in there. We are starting to tie in some of his grade-level academics to his IEP.  Both his teacher and I are excited by all those shiny possibilities. The services coordinator is coming from a different, but no less meaningful, perspective. I want to keep James moving forward with challenges that will stretch him, rather than be rubber-stamped. I am listening to what his team is saying and trying to process it as best as possible.

I want to be prepared, not led. I am an active partner in his education and developmental growth. See me rub my head, go online for hours, burn through my minutes plan, and drink pots of coffee. Wish me luck.

Different At the Dentist

I didn't tell James that he had a dental check-up this afternoon. That's because lately every time we've driven by the office on our way to the grocery store, he's become distressed and repeated "We're not going to the dentist!!!"

I am not sure where this came from. He started off with semi-calm visits, and then last summer he got freaked out.

It could be the noise from the drills and suction devices, except that we've been watching a Mr. Bean episode with a visit to the dentist and he's laughed at them then.

I blame the seat. He did get very anxious when he was lowered back and down last time. He was very unhappy about that bright light in his face too, despite the technician putting a cartoon on the ceiling screen (the things these kids get at the dentist these days; so not what I had, let me tell you).

The dentist, as usual, was awesome, talking soothingly with him and getting him to climb up finally on the dreaded seat. She then proceeded to do his checkup with a minimum of invasive  tools. I believe she used his new toothbrush, a mirror on a handle, and the room's regular lighting. I held James' hand while she gently scraped away a small area of plaque from his lower front teeth.

The good news is that his teeth look fine and he has no cavities!

I could feel him relaxing, and at the end I thought James would go for some fluoride treatment if I put some on my finger and then applied it to his teeth. This worked so well that the dentist then applied the foam fluoride treatment to his teeth with a toothbrush. Wow! This is great news and another big first -- James has never sat still and let us apply a fluoride treatment before.

This whole visit is a great example of why I love our dentist. James' loud noises and distress did not vex her. She was very calm and positive as she kept moving him forward through his visit. She was willing to try a different way to get him his checkup. And bonus: because so many clients are special needs children, I got the scoop on second grade teachers for next year!


Savouring a melon-y fresh victory in dental hygiene and maturity!

Long Night in the ER (Day 5-6)

Open Letter to Emergency Rooms: We have to stop meeting like this. It's wrong, wrong, wrong and I want it to stop.

I never intended to spend so much time with you and have you reach so far into my life. But you have. No one can save lives like you, ER; you make life and living seem so precious. I've met some amazing people through you and had to stretch to keep up with your bursts of frantic energy, shifting teams, and constantly change of game plans. My life will never be the same after being so much with you recently.

I will always remember our special times together, especially late at night. The waiting during those fantastic hours between 2 and 4am, where time seems seems slow and the world narrows to just the two of us. The random weekends and odd vacations cut short, where we had the unscripted rendez-vous.

But the sleep deprivation and anxiety are wearing. I think it best that we just be friends, and see each other in a much less frequent basis, in future. Can we just try that, please?

Yours, sincerely - Me

P.S.: Yes, we are back home, and intend to stay there together.

NYE 2011: Countdown at 6PM

2011, no offense, but you stunk at the end. Good riddance!

The beginning was not so bad. In fact, looking back at January pics, I can see how much the kids have grown. I remember the concerns I had then for them. How they powered on through and made their own success stories. That makes me happy to remember:

James went from not being very distracted in class, barely being able to write, and crying when I showed up to help at school to a confident first grader, who is able to sit in class for most of it, get A+ grades on spelling tests, and shows off for me at school singalongs.

In fact, this is what we read tonight, together:

I am almost reconciled to the fact that my baby boy is gone and my big, almost 7-year old is growing up and out almost every day.

Sick

I have a head cold. Didn't feel so bad at first, but it's got my attention now. How will I get it together for Christmas and keep up as the driver for the family? Well, my fingers are crossed, so that's a start. Got some unexpected respite lined up for this afternoon. I think I'll get some Throat Coat, to go with the Mucinex and saline nasal spray. I want to use the big guns -- my prescription cough meds with codiene, but then I can't drive. Friday night can't come soon enough.

The kids are well, yay. But they need parents to take care of them. Oh well. At least grocery run is done for the week, we have gift wrap, and many presents have been purchased. If only I could find them. I hate being sick and worried over the holidays.

Looking forward to next week, when I can go back to enjoying the little things.

Urban Bankrupt Life

My life is more than a little bankrupt, right now (from the Urban Dictionary). You see, I had more than a few surprises hit the fan about 10 days ago. Not my father this time. My husband. It started with a call from his MD as I was literally in the car, trying to pick up James. And no, he couldn't talk with me in depth and I could not call the school to say I'd be late picking up our son and then call the doctor back -- he was off duty, actually. He was just basically calling to tell me my husband's health was in danger of catastrophically failing and that I should meet him at the hospital. That's all. And a Happy Friday to you too, buster.

Before a week was out, I had panic discoveries of an unpleasant nature at the bank and with some utilities. I asked for financial assistance. I asked for support. I emailed heads-ups about extra crazy chez nous to the kids' teachers, who valiantly tried to support me as I tried to hold our world together with a couple of crochet hooks and one hell of a headache. With a lot of help from some very nice relatives, friends, and neighbours, I've so far been able to do it.

I feel like I'm caught in the middle of a deadly game of He Said, She Said, between my husband and his doctors. I'm actually seeing a lot of validation in the doctors' concerns, yet trying to not just believe anyone. Christmas is coming. The kids' birthdays are happening over the next three weeks. Please, just let us ALL make it through. Please, let's make some good changes and stick with them. So far they have. But how far will this go?

What do you do when your spouse, who is trying as hard as they can to be a good person and keep providing for the family, makes some bad choices that threaten their life and the family well-being? How do you keep a balance for your kids? How fast can your special needs child acclimate to new and bewildering routines? How the heck do you remain calm and not let the children know that one of their parents has been basically flirting with death?

Man, I don't know. I am making it up as I go along.

Art of Redirection: I

James was on a tear late last Sunday afternoon. Could be many factors, including changes in weather, growth spurt, and keeping up the lively pace of First Grade. I suspect, however, that too much TV and play time on the computer at PBSkids.org had a lot to do with it. Yes, I know better and yes, I let it happen. Guilty.

Regardless, when his Dad and I put our feet down and told him no more computer or TV for today, James got very agitated and upset. He cried, used a different voice that got high and panicky, then deep and angry, like a dinosaur. He YELLED (and that boy has lungz) and almost threw things. His Dad, frustrated, wanting to help, but not sure what else to do, tried talking calmly with James, then yelling when he got more physical.

Things calmed for a moment or two, but then James started up again. I got him to come to me so I could give him a hug. I told him I understood that he was angry; that tv & computer time were over for the day. He told me to leave the room. I kept telling him to take a breath and not shout. I gave him hugs whenever he came over for them. He was crying so hard. At times like this I can only guess what it must be like for him.

After just a couple of minutes, at another calmish pause, I asked him to bring me a couple of dirty dishes that were near him. He did, and I thanked him and told him he was a big help to me. I asked if he wanted a yogurt squeeze-up (a favourite treat) and he said yes. I told him if he brought it to me that I'd open it for him. So we did that.

Then he asked in a normal voice if he could write his letters. Of course I said yes!

Redirection, I love you so. May your wisdom and effectiveness never fail.

James, I will try better next weekend to provide more structured activities.

100 Days, From a Distance

This week, Jame's school celebrated the 100th day of school. Because his school contains only 1st and 2nd grade classes, they make a huge deal about this. No kidding -- there are signs everywhere, welcoming all to the 100th day of school. Parents are encouraged to volunteer or drop by to share the special day. Classrooms set up to do crafts, games, and activities. The most popular is the goodies gauntlet, where kids get to pick 100 pieces of their favourite snack foods.

I was excited that James was getting to be a part of this, because it made him a part of our community and would have a shared experience that his peers would remember and talk about in later years. I was also hesitant, remembering what happened when I showed up at the Winter Singing Festival.

Sure enough, James was confused as to why I was staying in his room with him, once school started. He started to look anxious and then began to cry. He could not stay seated or still. He kept rocking on his feet or popping out of his chair. He was trying to make sense of it all, asking me things like "Mommy? You stay in in the room?" and "Mommy, is time to go home now?" and even "Mommy, you go outside?" His distress was acute. I could practically see the synapses short-circuiting. Poor guy!

I felt blindsided and isolated yet again by autism/sensitivites. Then I sighed (I do a lot of that) and tried to think about how to handle Right Now. I tried explaining that it was okay, I was just visiting and he'd get to have his whole day at school. No go. It didn't help that his teacher's well-meant urgings to me to "stay in the class, because he will really remember my being here and it will matter to him" added to the confusion. I think his teacher was right, but all the talk and confusion was ramping up both his and my anxieties.

I finally decided to hang out in the background, helping to take pictures for the teachers and assisting the moms with minor clean-up and refills. Every now and then I'd swing close to James, tell him "good work!" and take a picture of him and his classmates before fading back again. Lather, rinse, repeat. And sigh.

Once back home, I tried to review what happened and think about what would have been a better approach and how to do it better Next Time. I thought I should have done a social story about 100 Day at school, so we all could have gone over it in advance. But, I realized, I never thought I'd need one because I'd been with James in a classroom when his SHAPE assistant could not be there, so I could sit by him and help. He used to loved it when that happened. Why has my showing up at school suddenly become a problem? I can only guess that before the school was smaller, quieter, and more structured that his present school and class. Also, James is "waking up" more to his peers and environment. I know he can get over-stimulated, especially when it gets noisy. He is also getting more fixed with his routines than before.

So the best I can come up with is to keep trying to help out in the classroom, largely staying in the background until he gets more comfortable with seeing me there. And do a Social Story for the next time there will be a big school event. Boy, is this frustrating!

I remember my daughter's first 100th Day celebration. I had to come late (because of problems with James' school bus) and by the time I found her, she was off to the side of the room and crying silently to herself. So we sat together in a quiet corner and then worked our way up to doing a few of the activities. She stayed away from the noisy and crowded areas as much as possible and did not want me out of her sight.

I get a little discouraged, you know? Because I see all these other kids just having a ball. I know it's not that simple for everyone, but sometimes it really feels like it is for everyone but us. And here we are again, participating in life, from a distance.