Tuesday, December 28, 2010

Sick of Being Sick

I thought we were doing really well, with only my daughter succumbing to a bout of the flu early in the school year and me with a sinus cold just before Halloween.

Well, then December hit. Duh-duh-duhhhhhhh!!! My daughter's birthday, Christmas, gifts & cards for not only family & friends, but for teachers (or in James' case, his support team of 7). Oh, and don't forget James' birthday to follow early in the New Year!

Yeah, the sinus cold came roaring back, and gave me 2 presents: bronchitis and a sinus infection. I blame not being able to sleep, due to kids having bad dreams and James coming down with a cold (later to bloom inot a raging ear infection; we were on antibiotics at the same time: yay. not). Oh, and the fact that our temps would bounce between 70 and 20 degrees a couple of times a week. So not healthful.
James, bursting into howls of "Mooommeeeee" and tears at his schools Christmas performance. The meds had just started to kick in and his aide said he did great singing with his class, but it was Game Over when he saw me.

Two weeks before Christmas, I threw in the towel and basically shut down. There are a couple of people who will be getting their Christmas in January. Sorry, that's how it goes this year.

I spent my days on the sofa, reading Meg Cabot and drinking enormous quantities of tea. Who cares if I doze off or lose my place when I get dog-piled by the kids? It's Meg Cabot, my tasty bon-bon lit of the moment.

It really, really sucks being "It" for 2 kids and a husband while being dragged under constantly by a virus and infection. It's not like I can call a friend or hire a sitter. My friends are either up to their eyeballs themselves or 70 miles away and happily involved in their own lives. No money for a sitter. And the respite care folks? Well, our luck has broken with them and lately I've been hearing more promises than opening the door to actual aides. I understand, it's the holidays. Still sucks for me.

Days like this are when I feel tired, having to be on call 24/7 (because my husband, in addition to working full-time, has seen his commute balloon out to about 2.5-3 hours each way on a regular basis -- you do the math, he's wiped too). My folks were down & out from this virus too. In fact, a high point was high-fiving each other weakly as we managed to swap favours one day.

I don't know if it's the cold, being off his schedule, or a growth spurt (or probably a combo of them all), but James has suddenly become uber-sensitive to noises: the bathroom fan, the microwave, any music on the stereo. He screams and becomes so upset. So add to all the activities, trying to balance being protective of him and not letting him get walled in too much by sensitivities. He's also become very clingy and I keep hearing "Mommy, Mommy, Mommy" every 5 minutes. Sometimes my head feels like it's about to explode.

I am so sick of being sick. I am trying to hang in there, breathe as deeply as possible, and focus on having a healthier start to 2011. I am trying to keep a check on my whinging about being sick so I can manage to enjoy some of the good things that have been happening: Our daughter having a great birthday party with her new classmates, both kids' faces when they saw their first new bikes on Christmas morning, quiet moments when my husband and I could just relax and watch the kids having fun ... and Meg Cabot on the sofa. With a pot of tea.

Magic Marker Monday: Making Our Holidays Bright

We've been laid low by a virus that just won't quit, James and I. Still we've found time to make our holidays bright, even if I haven't been coming online to share recently.

Voila! Candy Cane Reindeer, made with sweets from the Dollar Store and leftover bits of pipecleaner (probably from the same store):

Jingle bells, made with jingle bells, pipecleaners, and the odd pet collar. Add music and friends and suddenly, we're re-enacting the dancing scenes from A Charlie Brown Christmas in the school's gym!

Making cookies from a simple roll cookie recipe (thank you, Joy of Cooking!) makes the kids happy, works those hands in needs of deep muscle pressure and fine motor tuning, heats the cold house, and makes a delicious treat to eat and share:

Last for today (but not least) is an art project that James made for us at school, using paint and his foot & hands:

Notice he wrote his name in the lower right corner!

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Thursday, December 02, 2010

"Best Thing"? Really?

This news snipped caught my eye "Brain scan 'best thing so far' in detecting Autism." It seemed so cavalier that I clicked to the article.

I do not agree. At most, it's an interesting future diagnostic tool. I see it as more of a "best thing" for the people who perform the scans and conduct research than for the patient.

When James was first diagnosed, his pediatrician said "He can't be autistic. He looks you in the eye." I had to insist that he call in a referral to our Regional Center. They sent out a wonderful woman, who talked with his father and I, and tried engaging James in a series of activities. She listened; she handed us tissue when we teared up. She looked at James and took lots of notes. And she wrote up orders for O/T, Speech & Language therapy, and home visits for a developmental specialist, who later became a personal friend, mentor, and support.

Pardon me for snorting and being skeptical that a brain scan is better than anything that woman and those groups of nonprofits did and continue to do for our son.

Brain scans CAN: can help target patterns of activity in an individual's brain; help provide scientific evidence of aberrations in brain function; be costly and freak out the patients.

Brain scans do NOT: help a person interact with others; provide behavioral redirection; cure Autism; show which therapies might be most beneficial to an individual; open doors for therapies that will help the individual and their families to get the help and services they need.

So in my opinion, right now these new brain scans are really not the "best thing so far." So far the professional people who care and work with our kids are the best things. Ever.

Wednesday, December 01, 2010

Special Exp. / Wordless Weds: Thankful

James' face says it all about how he feels about the holidays:

He participated in so many activities this Thanksgiving: making cookies, decorating the house, and (a biggie) sitting at the table all through Thanksgiving dinner, chatting with his great-aunt and nibbling on chicken nuggets. He laughed and played with his cousins. For this and more, we are thankful.

For more great images or to join in the fun, Visit Special Exposure Wednesday at 5 Minutes for Special Needs.
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and ... Wordless Wednesday

Tackling the Chores, or: Life Lesson, Part XVIX

I don't know how it is for others, but I find that life moves in waves. Things can be going along okay and then, I get swamped. Someone gets sick, we go on vacation, stuff happens. The rhythms get disrupted and things build up. For several years, I've been building a backlog of cleaning, chores, and projects that will take several child-free years to work through (hahaha, I still am talking about it being possible to finish ... but I digress). So I've realigned expectations and try to go more with the flow, living life right now and not stressing too much about doing it perfectly or just right. Or like Everyone Else.

I also get periods where I feel overwhelmed and isolated. Stuck in a rut. I hate that. Life is not fun and the kids know that Cranky Mom is in the house. I've been working with a parenting counselor to learn some managing strategies. One thing that has really helped is talking things through with a supportive person outside our routines. I've remembered lessons I learned in college, when I had to juggle classes, extra-curricular activities, and several part-time jobs.

I remember that I can get a lot accomplished if I focus on routines, and a few, basic tasks. I remember that routines can be set to a fixed amount of time, so that I don't get too carried away. I remember the power of 20-minute naps or rest sessions.

Other things, such as Positive parenting & partner support are discussed in the ongoing counseling sessions. They are also helpful and are long-term works in progress.

Meanwhile, the kids and I have come up with some set chores they do to help keep the house clean each day, as well as take on some responsibilities for preparing for school. Having them help with bussing their meal plates, organizing their backpacks, and doing a daily pick-up around the house are already helping so much.

I started with having the kids decorate old diaper boxes. At the end of every day they do the rounds of the house, popping their socks, toys, and miscellanea into them. Then the boxes go to their rooms, and I help them put things away. If a place cannot be found for them after several days, into the garage it goes, where it will be sold or donated. After a couple weeks of this, they are now picking up without the boxes or having to refer to the charts.

I remember that I used to set up or break down an entire cafeteria in 20 minutes in college. Yes, I was part of a team, but our kitchen is a lot smaller than the cafeteria. So I tell myself it will take me 20 minutes -- tops -- to clear the table, take care of the dishes, and prep lunches for the next day. I do it in the lag time between bedtimes. I think the noise I make is like a lullaby to James, because he drops off quickly on the nights I actually do this.

My future goal is to plan a menu for the week. Scary! I am working up to it by having one or two meals planned a week to cook (quiche, spaghetti, casserole, etc.). I know the theory behind it, but I am hanging on to the illusion of culinary spontaneity as type of freedom in my life.

Now I find that I am excited to tackle occasional projects. Last week it was washing curtains and cleaning windows in the family room. This week, it was cleaning the hall bathroom. I had to take a picture of that last one.
Ooooohhhhh .... aahhhhhhhh .... yay, Team!

Tuesday, November 30, 2010

Magic Marker Monday: Plein Air Painting

We took advantage of a sunny, warm weekend earlier in the month and took James to our Town Green. James loves to run about on the grass, up, down, and around on the intersecting walkways, and around the fountains. This time, his sister was on a play date. Because he'd been wanting to practice his letters and number so much (thank you, Kindergarten!) I brought along some paints and a small sketch pad.

This is what James wanted to do:

He continued painting while my husband and I talked and admired the beautiful weather. What did we talk about? How proud we were that James is constantly trying new things. Last year this time he could not have managed a small paint brush like this. He certainly would not have painted his own art, looking at the trees, clouds and sun around him for inspiration. To say nothing of talking to  us about them as he painted.
I am still watching his hands. Whenever he tries something that takes a lot of concentration, the resting hand gets drawn back and in towards his body, fingers curled, thumb up. When we do table work, I remind him to try using it to weight down the paper.

This afternoon was pure fun. And we have some new fridge art:

Visit 5 Minutes for Special Needs for more Magic Marker Monday.

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Wednesday, November 03, 2010

Special Exposure / Wordless Weds: CATS Walk, First Ever!

This past weekend, James, his sister, and I participated in the first-ever CATS (Community Autism Trek, Sonoma) walk. We walked to raise awareness not only of autism, but also that the wonderful CATS Program exists to help so many in our community. And raise a little money to support the students and the program too.

The CATS Program a great source of information and learning for students, parents, and professional who work with children and families of special needs people. It's also a great resource to socially connect with other families, which is tough for us.

How did the walk go? Just look!

And yes, we've been in the program and it has been a great resource!

For more great images or to join in the fun, Visit Special Exposure Wednesday at 5 Minutes for Special Needs.
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and ... Wordless Wednesday

Tuesday, November 02, 2010


I read this article about autism and the MIND Institute in the NYT and it just ... resonated.

The non-responsiveness. The staring. The trips to UC Davis. Providing samples. Having to make hard choices, like leaving my job. Looking at our autistic child's sibling with a new (and sometimes heart-heavy) perspective. Lack of answers. Curveballs. Making it up as we go along. Trying all the therapies that seem helpful. Progress. Being grateful for assistance. Realigning expectations of the future ... for our family.

I wish this family all the best. They are a lot like us.

We Voted!

This is what our kids get to do while Mom votes:

Our local polling place is at the K-1 school, where James' sister and now James go. I like the kids to see people going to vote, and thankfully it's also close to our house.

This time there were no initiatives that directly target autism-related issues, but it's always good to be involved.

Meanwhile, a little Halloween political candy:

Magic Marker Monday: Basic Holiday Fun

Halloween morning. It's after breakfast, the TV is off, the kids are literally bouncing around (love that indoor trampoline) yet I am still struggling to reach full awake status. What to do ...

Make cards!

We broke out our economy pad o' construction paper (big back to school sale at Target), scissors, crayons, sparkle pen, FREE stickers from Trader Joe's (just when I think I could not love them more!) and adhesives (both tape and glue stick). Result: almost 45 minutes of colourful fun:
James' card is the green one on the left.

Here is the inside of his card:
I traced his pumpkin and them helped him cut it out. I offered him the scissors in between his left & right hands and he chose his right. Yes, I am still obsessing -- shhhh! James wrote his name with crayon on the right.

Here is our collection of spooky creations:

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Wednesday, October 27, 2010

Special Exp. / Wordless Wednesday: First Lost Tooth

... and he swallowed it while at school. Just like his mom.

The Tooth Fairy found out anyway!

For more great images or to join in the fun, Visit Special Exposure Wednesday at 5 Minutes for Special Needs.

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and ... Wordless Wednesday

Tuesday, October 26, 2010

Still Learning Our ABAs

Autism-related behaviours manifest differently with each person. Our experience with James is special in that he likes and seeks out others, he is normally sunny, and is empathetic toward others. Sometimes I realize how focused I am on James, and how much I am not paying attention to the bigger picture if Autism, it's issues and research.

For example, this morning I was reading an article regarding treatments for those affected by Autism Spectrum Disorder (ASD), which is James' official diagnosis. There were many references to ABA.


Okay, I'm officially clueless. I had to Google it. ABA stands for Applied Behaviour Analysis and there are pages and pages out there on the internet that cover what this means, what's hot, and evidence-based reports. The Bright Tots website is what I was reading this morning.

Once I got going, I realized I did know what this was, I just wasn't used to thinking about it as "ABA". In preschool, his teacher and SHAPE assistants worked with us to help James learn to eat and dress by himself, as well as cleaning up after himself. It was key in getting him engaged with successful potty training (although it took several attempts to find the correct motivating behaviour). Instead of ABAs, we talked about self-care goals, targeted social interactions, delved into breaking tasks down into small steps & social stories, and strategized ways to model correct speech & language.

Now in kindergarten, his team and family continue to look at ways to keep James engaged in his class routine, improve his social & language interactions, and encourage age-appropriate behaviours. So I feel better that I haven't totally missed out on ABA for James.

What I still feel I need to learn about ABA, though, is how else it might be able to help James. Where we can find these services. How we can pay for them. Because last time I looked, they were not covered by health insurance in California. Because I agree 220% with Autism Speaks in the part of their 2009 document "Arguments in Support of Private Insurance Coverage of Autism-Related Services", which states:
Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Incidentally, I think the government should be seriously looking at this as well and see programs that support ABA-related services as a key investment in our future. We need to keep state and federally funded programs intact as much as possible, because for families like us they are just about our only options.

James currently receives the bulk of his services from public schools and the North Bay Regional Center. Without this assistance, we'd be hurting. And 10-20 years down the road, James might be even MORE dependent on government-related services, had we not had the help to get him to manage his own self care and jump-started his learning and speech. Along with the other 1 in 100 children on the spectrum.

Monday, October 25, 2010

Kinder F/T: Pumpkin Patch

James' first field trip as a Kindergartener was one he's before -- Grandma's Pumpkin Patch! Even though the weather was grey, cold, and moist the kids were excited.

There was no room for parents on the school bus, so I met up with them after their arrival. James did very well on his first bus trip without a seat belt and his aide said he did a great job of going right to his seat and enjoying the trip.

This year he helped make his pasta string by picking out the colours and poking the yarn through the holes. When I asked who it was for, he said "You, Mommy." Melt. I shared with him halfway through our visit.

James liked handing with his buddy Alex. They raced through the mini corn maze and up to the top of the hay bale pyramid, just to enjoy the jumps back down. He picked out his own pumpkin, one of the biggest in the whole dang patch, and could read his name on the label to show me his choice. Awesome!

James also enjoyed looking at the pullets, which was new because I don't think they usually have chickens this young on display at this time of year. The heat lamp was working overtime in that pen!

He then wound up his trip by driving one of the old display tractors. It's still a little surprising to me to see how well he takes to getting behind the wheel and practices driving. I don't know why, but I still see him as a more passive three year-old. I know he's not ... but I guess the contrast is still new for me. Anyway, I love to watch him go!

We did run into a bit of a problem in that James needed to use the bathroom, but was freaked out by the portapotty. So I signed him out and took him to a quieter restroom, where much was accomplished. We then rejoined his class for lunch at a nearby park. He did a good job eating and racing about with his classmates, playing.

I thought that he was not as excited as in past years to go to the pumpkin patch. I am not sure if it was the weather, the bathroom situation, or the fact that he's visited this patch several times over the past two years. Regardless, it was still good to get out together and have some seasonal fun.

Magic Marker Monday: Colour by Numbers

Another KinderWork project.

Normally, I am not a fan of colour-by-numbers, but I can see how this could be a very helpful activity for James, both by breaking a picture into ordered components and coordinating his number recognition and colour identifying skills.

This reminds me of the solve-the-equation & colour the picture variations I used to make up for my mom's classes, waaaaaay back in the 1970s. I'll bet I can come up with some more for James. Hmmmmm ...

I just thought of something else -- it's a good speech and social discussion project too, because we went on a field trip last week to a pumpkin patch!

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