Multiple Personality Tasking

I have been saying for a while that I love pretty much everything I am doing in my life: being a mom, working full time at my current job, spending time with family for major life events, engaging with the public schools system, and finding out more about autism and thinking of ways to improve services and resources for those dealing with it.

What's stressing me the heck out is the constant need to be in multiple places at the same time. It's usually at least three. Sometimes it's all the above stuff, but mostly it's the mix of my life underneath: clean the house, focus on finances, single parenting, gratitude on the go, trying to find a place of my own in an area that has had a huge chunk of affordable housing destroyed in a fire, the need to slow down and exercise, legal issues tied to autism, chasing down services for my kids, trying to plan for the future, keeping the car running.

Then there's the me-me stuff: reading, making things (anything, from writing letters, to taking photos or making images for display, printmaking, cooking, and imagining), re-connecting with friends,  meditation. Grieving.

I am not just multi-tasking, I am multiple personality tasking. And I now need to add another thing: simplify what I can, because the weeks are blurring past and I am tired.

People Who Get It

Every now and then you run into people who just Get It. With autism, it's a mighty powerful emotion when that happens. This week I feel fortunate for such encounters:

LA Live Steamers at Griffith Park

James loves trains. To give he and his father something to do on LA visits, I looked up trains and found Travel Town, Los Angeles Live Steamers, and Walt Disney's Barn neatly lined up at the bottom of Griffith Park. It's been great for us all - low cost, free parking, and friendly volunteers abound.

This trip, I asked for tickets for 2 adults and a teen (because I am never sure about non adult fare breakdowns).

   "Bless him for coming with you," the woman told me.

   "Actually," I said, "our son is on the spectrum and loves trains, so ..."

    Her face softened and she said "Oh, we don't charge for those passengers."

It's true. I almost cried.

School Bus Driver

This school year has been largely awful, with some sunny spots. James' current driver is a friendly guy named Mike who loves his job and the kids he drives. He will give out his phone number to parents and takes time to talk with us, making it seem like it's no big deal.

I had to call him today about a minor thing James shared with me. He completely understood. I felt self-conscious about calling him twice in just a couple of weeks (always self-conscious of being a Trouble parent), but he made me feel like we were partners, just figuring out these "life" and "autism" things together. I did cry after we finished our call.

Legal Aid

The lawyer with whom I am currently working is one of those who say they are doing what they do for the kids and I believe him. He is at least as busy as I am and still responds to my emails and takes time to touch base and strategize for our next foray into the fray to get James' educational rights and needs taken care of as he needs them to be done.

Always thoughtful, calm when I am ready to scream with frustration, and very good advice and help so far. I always feel less frantic after our calls.

Easter Mini Miracle

Easter this year is lower-key than in the past. I am working full-time, money is tight, and the kids are older. The Bunny still left baskets decorated and full of goodies and we are going to an egg hunt at the grandparents' later today with cousins.

James woke us with "It's not Easter yet?" at about 6:30 this morning, and then proceeded to snuggle with me in the big purple armchair for a good 20 minutes, happily wriggling and humming. He was more interested in using his iPad than Easter, but Big Sister encouraged him to get on the sofa so they could look through their baskets together.

After breakfast, we took showers and James had a bath. He asked to wash himself and then ... proceeded to start washing his hair on his own and asked me to cut his hair after.

Yes, yes, YES!!!!!

OMG, I am so excited. He's never done this before. I am still used to the screaming that accompanied getting hair wet and the mental fortitude required to get him into his bath and out again. To say nothing of the rodeo atmosphere of trying to trim James' hair as the thrashed, wriggled, bucked and whined, trying to escape the sensation of sharp pointy things near his ears (with his "No, no no!!!" ringing in my ears).

Now he is scrubbed and trimmed, proudly wearing his new Minion t-shirt and snacking on Minion cheese bites. He is also hugging his stuffed bunny and looks supremely happy.

Thank you, Easter! And I am so proud of my guy - he is growing up and showing initiative.

People Who Shine

For various reasons, I have been reflecting on a line from one of my favourite movies:

"Character is what you are in the dark."
Buckaroo Banzai rocks, just saying.

Yes, things are dark. And then there are people who come across our dark patches, and shine. They can mean so much by just being who they are.

We were so lucky to have met with one for James' second aide last school year. She wrote simple affirmations for him that made all the difference. Really, the words written on a 3x5 card that read "I am smart" and "I can do this" made a blazingly positive change for the better for him in school, and encouraged me to change direction myself.

The man at the craft and hobby hall at the county fair, who made a decision to being his miniature train park project to the public and spend all afternoon at the table so he could share his excitement with others, and make the time to ask kids to take a look. He then encouraged them to share what they thought and he *listened.* It's rather rare for someone to give others the time and space to form original thoughts and then receiving their perspectives with relaxed and obvious delight.

Tonight, another person shone brightly for us -- the woman who cuts our hair. It's a bit of a drive to get to her workplace, so I don't see her often. She does a fabulous job with cutting my daughter's long hair and giving me a clean, yet sassy, look. Always friendly and encouraging, we love to visit with her. For a few months, I'd been thinking she'd be the perfect person to give James his first non-mom hair cut. She works with horses, has children of her own, and James has been on hand a few times while we had our hair done.

James is also going through a phase of imitating his older sister, so I figured that might further help him get his first hair cut from a professional. I called and discussed it with her, outlining his sensitivities and reactions and asking if she'd be willing to try giving an autistic 8 year-old his first haircut in a shop. Bless her, she said yes. And not only that, she was upbeat about it.

But she did not just cut his hair - oh no. She asked his permission to cut his hair first, and told him it would make her happy if he let her try. She talked gently and coaxingly through the swift cut, and he never once shrieked or twisted, although he did flinch. When he became apprehensive, she let him touch and hold the scissors or comb so he could get used to it. After, she thanked him and told him how handsome he looked. James grew an inch taller at that, I tell you.

Best part for James? She played hide-and-go-seek with him all the time my hair colour was setting. Right there in the salon! Luckily, it was after regular hours. While she was cutting my hair, James and his sister took turns playing the game in the many rooms and hallways. Then it got quiet, so we sought the kids out. They were in a massage room, playing. Both kids got suckers and on the ride home I played the car CD, which was Christmas instrumentals. They were very happy and have already asked how soon could we go back.

I can never thank people like her enough. They pick me up and keep me going. And I am so grateful for the reminder of light in the dark.

Back To Work, Day 2

I know its early days, but things seem to be going well, both on the home front and at the new job. I miss the kids, but am so relieved to be earning some money and working with skills that I enjoy using. The coworkers are good people and the close-to-home location is a big plus too. It looks like I'll be able to attend back-to-school day with James and pick him up from summer camp next week.

After several years of trying other peoples' day cares, it is very nice to have found someone to watch the kids in our own home. We have a yard and a park nearby (to say nothing of tons of toys) so we are certainly equipped. I think this will also keep anxiety levels way down for James and his sister.

I must confess, it is also nice being able to concentrate on something for longer than 2 minutes without having to intervene in a fight or to correct some bad habits.

And when I come home, the kids are excited to share things with me - like the fact that the cat takes naps in the garage during the day and the low-down on all the names of the Angry Birds Star Wars characters. Bed time routines are extra sweet.

Student of the Month

I think we've all seen those bumper stickers that read "My Child Is Student of the Month at __________" -- they are so prevalent that they've spawned snappy comeback bumper stickers like "My Child/Cat/Dog Can Beat Up Your Honor Student" and made their marks on American auto adornment.

I knew, going into this school year, that James' new school did the Honor Student thing. I cringed. I usually shy from the fads of the crowd, attended parochial school for 12 years, and was raised in a rather anti- "toot your own horn" family. It so went against the grain.

And then the school year started rough. It spiraled down toward disastrous. While part of me knew that eventually each child would be one of several Students of the Month at assemblies, I never expected James to get there any time soon. He was the trapezoidal peg that the school kept trying to pound into a round hole. There were so many things going wrong.

Then we pulled James out of school and did Independent Study at home for a few weeks, to keep matters from getting worse. I calmed down (a bit), pulled focus, and changed tactics. I asked the school for help.

What we got, was something of a freakin' miracle. A new classroom and teacher, with classmates James knew from the previous two years. Most importantly, an amazing aide who "got" him came into our lives. She went so above and beyond the proverbial call of duty that reading James' progress reports from his first and third semesters make him sound like two different boys.

School went from stressful, unhappy, and exclusionary to exciting, organic, encouraging, and positive. We feel so incredibly grateful and lucky.

And in the last month of school, this came home in James' backpack:

Yes, and I went to see him receive his awards.

This has been a wonderful conclusion to a challenging year. I am so happy James had a chance to participate, and that he was chosen at a time when being Student of the Month could truly be a proud experience for us all.

James, sitting with his teacher, aide, and classmates.
His good friend from First Grade has his hand on his shoulder, to make James feel better amidst all the noise.

James receiving his award from his principal, who helped make all the wonderful changes happen.

Student of the Month James -- bumper sticker in one hand, certificate and prizes in the other.

James' teacher, aide, and classmates, congratulating him.

Way to go, James! We're so proud of you and how far you've come. I'll even tape that bumper sticker to the back window of our car, if you want.

So Hard, Just for Me

Today I am doing something that is excruciatingly hard - donating my car. It's not just my car. Not just my first new car (25 years ago). My first new car that my Dad helped me test drive and buy.

It's my car that's Been There through a slew of awful life upheavals: breakups, moves I did not want to make, times when the only person I could bear to be around was myself ... and my car. Back when gas was still under $2 a gallon, we'd take off on weekends to hike or be alone on central coast beaches. This car has over 240,000 miles on it. Some parts have been replaced, but it's still basically itself. I've had good times with it too -- road trips with friends to Santa Cruz and Los Angeles.

The hardest thing for me to release is my last big physical link to my life before everything changed in 1991. I'm talking about the Oakland Hills Fire. Where I lost the home, neighbourhood, and things  I grew up in / with in a day, seared by temperatures well over 2,000 degrees Fahrenheit and blasted in a firestorm that created its own gale-force winds. My family and I ran for our lives twice that day, helped by friends and some family members whom I will remember forever with gratitude.

When I crept back behind police lines the next day, everything was leveled, smoking, and covered with a fine grey ash. The fire was still not out. But there it was, my car -- with the only change of clothes I had in the world in a bag in the trunk. One tire burned and the power lines above had melted and dripped onto it, but it was there, and it the engine turned over when I got in and twisted the key.

In the weeks that followed, I found out who my true friends were, and that process hurt. I lost several close friends and family members in a steady procession in the following 4 years. I found out what bastards our home insurance company was run by, and it sickened me. My auto insurance wanted to total the car, but relented when I said I wanted to keep it. I had it checked thoroughly after, and nothing needed replacing except the burned-out tire. It stood by me and I tried to do the same.

Over the past 2 years, however, it started needing repairs that I could no longer afford. My husband and I decided, after James' diagnosis in 2007, that it would be best to have a parent be stay at-home, and our income halved in consequence shortly after. I've been fighting to keep it with me, though. I know in my head that this has been long overdue; that sometimes I have to let things go to let new things on. I know that holding on to this car is all for me, and it's not helping our family at this point. Someone else can benefit from this car. It still hurts me today though, in a burning way.

I have had the support of friends to help me make the best decision -- it's being donated to the Make A Wish foundation for children. It will go to auction and I hold hope that someone somewhere will buy it and make it go again. It should not take too much - just more than I can give right now. So good-bye, my Mazda. Go and make a wish for someone's child come true, and keep on making a difference in someone's life. I will never forget you.

Early Morning TJ Run

I tweaked out my back yesterday and passed on the weekly shopping. After some rest and a whole lotta aspirin, it's a bit better today. So when James popped awake this morning, ready to leap, shout, and cavort with the day, I got him a quick breakfast and asked him to get dressed. "Okay!" was  his happy response. What a great difference from the negotiative, prolonged process with his sister, who was happily still asleep and remained at home with her dad.

My buddy and I took off for the weekly grocery run, arriving at Trader Joe's shortly after their 8 A.M. opening. I don't just love Trader Joe's, I adore them. Their low prices, their healthy foods, their South Pacific-themed stores, and their awesome Crew Members are a big part of our Child-raising Village.

It's always a pleasure to do our shopping there - it's like a little vacay for me. I also appreciate that the stores have almost everything I need, yet are smaller than most grocery stores. The whole chain is child-friendly without being child-centric and there are stores at most of our vacation spots, which means my picky eaters can get their usual foods while on vacation with a minimum of fuss on my part. Their reuseable bags are fabulous for toting toys and beach/pool play items as well.

So here are some things we picked up, as per our usual list:

James loves these in the morning, and for snacks. I am happy because he is getting fruit & fiber.

Cat cookies and tortilla chips are crunchy treats for lunch and occasional snacks. They are low in sugar, high in fiber, and contain no artificial ingredients. They are also much less expensive than regular grocery store items too.

James is a pretty simple lunch guy: he loves PB&J;
there are no preservatives or high-fructose corn syrup in these jars!

No high-fructose corn syrup or hydrogentated oils, and $1.99. Compare that with items in any grocery store bakery section.
I still haven't found anything to beat this combo.

James has become quite the helper, which is a sweet relief, as he used to run away from me in the store, dodging my attempts to keep him with me. Now he asks to push the cart, and does a good job all through the store. Not only does he stay closer to me, I can pass him items from the shelf and he'll run them to the cart for me. All the while, my formerly non-verbal kiddo pours forth a bubbling stream of  consciousness: "Two milks? Okay. I get the pink one. Now I get one more ... I did it!!" "I love it! Do you love it?" and "Oh, CARrots! They're orange!" ... while I head for the food demo area and take another shot of caffeine, and a sample of fresh blueberries.

Most stores have a stuffed Animal Crew Member hidden somewhere in the store, and kids know that if they spot it, and tell the Crew Lead at the info desk where they found it, they will get a small treat. What a smart idea! James' sister has taught him well, and he after spotted Pogo the Panda in the freezer section, peeking out of a reuseable freezer bag, he whooped and ran off to collect his prize: a red sucker (his favourite).

As he chattered and danced around, the Crew Member checking us out shook her head, and said with a smile "I don't know how you do it." "Do what?" I asked, startled. "All the questions ... you're so patient."

Right about now, anyone who's known me for a while is ROTFLOL. And anyone who's heard some of my stories from my temp job days is hooting like an owl on Everclear.

"Ah, well, I guess I just grew into it," I replied. And internally I was thinking "Are you kidding? This is a GOOD day! I prayed that he'd be talking to me one day. That he'd be engaged enough to do normal kid things with me. I am so happy he LIKES being with me and can show it. I am the luckiest person here in this store!"

Food for thought, on my early morning grocery run. And as a special bonus parting gift, as James skipped over to help me out with the cart, the checker showed him their new scratch-and-sniff stickers and gave him some. Scratch-and-sniff stickers? All right!

When James saw this one, he stuck it on me right away, with a "Here, Mommy. This one's for YOU!"

I also got the cedar. He kept the pizza one.

Yep. It's going to be a good day.

Note: No one paid me to write this post. TJ's has been delighting my family and I for many years.

Special Exposure / Wordless Weds: Now

It's been another tough couple of weeks. I feel like a broken record, but so it is. We've had another loss in the family -- someone who was far from our daily lives, but part of our family history. Closer to home, a friend and their family suffered a great loss. Dealing with money issues feels like trying to slay a Hydra, and our wonderful respite care person is moving on and out of our daily sphere of living.

These are the times when I feel like crying, but feel best when I can just stop and just be in the Now. Hug my kids. Kiss my husband. Sit outdoors in the green and colour that are fueled by summer. And breathe. Love what I still have, while it's still here with me, in the Now.

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

Moving on From a Chair

One of the few pieces of equipment we've needed and used for James to help with his Autism Spectrum Disorder needs is this chair:

    

This chair was ordered by his North Bay Regional Center case manager for James when he was just over 2, when he was first being evaluated and diagnosed with some pretty severe developmental delays. We've used it every day in this house up until this past weekend -- that's 5 years of togetherness. It became almost like a member of our family.

This chair was awesome, because we could snap James into a 3-point harness, which kept him in his seat (he'd wriggle or fall off a regular chair and was too large for a high chair). The footrest was helpful to keep his feet still at meals and ground him for homework sessions. The seat itself was adjustable, and there were a couple of years where we'd be adjusting that sucker every month or so.

It had its down sides; for a while it got used for Time Outs, until James started to not want to use the chair at all.  We've all suffered painful whacks to our toes on it's splayed legs. Lately, James has gotten too big to sit comfortably on it. It was time to give it back to the Regional Center, for another family to use.

So that is what we did on Tuesday. James said goodbye to the chair and patted it. I loaded it into the van, and we dropped it back off at the Regional Center.  While I dislike saying goodbye to another piece of James' younger years, it also feels good to be giving back.

Special Exposure / Wordless Weds: Mom Moments

I'd like to thank my kids, for giving me some Mom Moments that make me happy to be a mother. They may not seem like much, but they give meaning to my life. From last week:

Campfire Cookout. Yes, it's happening finally!!!

Sharing enjoyment of the little things.

Farmers' Market: food, people, music, and a thriving community; my family haz it.

Mothers' Day flowers; James helped me pick them out.

Time to savour sights and smells; kids help you retain that.

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

Friday Followup

Okay. Two hours later, I can report that while it felt good to workout and I feel better in my conscience that illness did not put me off my exercise regime again ... what is really making me feel better is that I came home to calm children who had already been fed.

 The freedom from meal prep, sit down, and clean up at the end of the day made me giddy. Thank you, THANK you to the wonderful woman who provides respite care!

I can't explain how good this feels. I just know I am capable of smiling again.

It's the Little Things ...

On our way out the door to get in the van to pick out our Christmas tree we saw our neighbours, who have two children a few years younger than ours. We were instantly side-tracked stopping to say hello and visit. We've had moving vans and holiday decorations going on around us, and it was nice to catch up.

All four kids ran back and forth, all over our front years. It was so sweet to see our daughter so tall and grown up, taking their little girl's hand and talking so nicely to her. It made me smile to have their Dad ask James how he was doing, and for James to answer back and have a little conversation with him.

We all admired their son's new scooter, and how well he zipped along on the sidewalk. My husband and I got to talk with other adults. Other parents. It was so satisfying. So often it's the little things that make life happy.

All four of us helped clean up to make way for the tree. My husband and I worked hoisting it up and down from the van like pros. We all relaxed in the kitchen over lunch after installing the tree in the living room.

Yes! And thank you.

This is What It Looks Like

I and other parents talk quite a bit about how how things that are straightforward for other parents often aren't for us, and about how that makes us feel isolated and saps our energy.

 This is what it looks like -- waiting 15 minutes as the entire school parades around a 1/4-mile circle to see your child in the Halloween Costume Parade:

... only to realize your child is not there. Other full-inclusion kids are, but yours isn't.

I tried not to feel hurt and reminded myself it was time for his speech session, which is very important for him. Still, it was a sinking feeling.

This is your son when you try to help out in class. He's way in the back of circle time, freaking out and crying, because Mommy only comes for drop-offs and pickups and now she's Right Here in the classroom. What The HECK Is Going On?

I expected this and remained calm. It's hard, sometimes. Especially as I've helped out in classrooms for my daughter and never got this reaction.

Lest this turn into a pity party for one, this is what it looks like, when your child on the spectrum adjusts to having a parent pop up unexpectedly and join the school day.

... because his teacher and aide also remain calm and welcome all parents to help out in the classroom. Here is James, doing the craft project that I was running during their Halloween party. He made a treat bag by writing his name one it and then stamping Halloween designs on the front and back.


And this is what full inclusion can look like:

Two guys sharing free time together. Having fun.

These are the times that keep me going.

Son of IEP (or: IEP, Part III)

We're still working on James' IEP!

My latest round included an hour of careful review of the 23-page draft plus 3 pages of meeting notes and making comments in the margins. I thought it would take a mere 20 minutes. After all, we'd already put 3 hours into meetings to discuss all this, right?

Silly Mommy. Cue the FAIL buzzer sound.

Somehow, seeing discussed items in print raises even more questions for me, hence margin notes and the need to check in again with the Services Coordinator. 

In particular, I had questions about the goals stated in two different places about the time (percentage-wise) James would be on-task, in class. They seemed to contradict each other, and I did not want James to be pulled out of class if an in-classroom solution could be found.

I also wanted to know James' schedule of services. He's currently pulled out for speech (twice weekly), O/T (weekly, up from a set number of hours a month),  and adaptive P.E. (weekly). It's good for me to have this schedule at home so I can do my part to ensure he's at school at those times to get his services. Because outside appointments will happen.

Shared info from Behavourist meeting almost 2 weeks ago, including her caveat that she is contracted to support the family, but the school is welcome to call her to ask questions and discuss issues (thanks to the lovely confidentiality forms we all signed last school year).

Requested the addition of a pronoun goal for speech. James keeps using them in exact opposites (he/him/his for a girl and she/her/hers for a boy) and referring to others when he's really trying to tell us how he's feeling.

And yes, THIS year I checked to make sure James was signed up for the extended school year, so he would be eligible for summer school (if it's not going to be like it was last year). Pause for Kuzco victory dance.

There were some other items, but I can't clearly recall them now. What I did do was take most of a week to review the IEP draft and then raced over to the school at 4pm on a Friday so I could hand it in to the Coordinator and ask her a few questions. She was very patient and even cleared up the on-task/time in class confusion on my part, as well as addressed my notes on almost every page. Phew! She handed me her pen and I signed off.

She also made it a point to tell me that she spent a few hours with James in the classroom this morning and that she both enjoyed herself and was excited about how much progress he has made. That made me feel so good. I appreciate so much that she has been going the extra 10 miles for us.

I did not keep an IEP draft for myself, because it's now going to be retyped and recopied for the whole team. Meanwhile, James has an awesome set of goals in place for him this coming year, and the work has already begun.

Can hardly wait for Part IV: Epilogue (in which I review the final format and call it good. Or not.)