Saturday, January 30, 2010

SOOC Saturday: Being Invited

Around the first anniversary of James starting preschool, he turned four. We decided to throw him his first friends birthday party. It was simple -- we reserved a room at the local Round Table Pizza and invited his classmates. Three excited and anxious boys turned up. It was a first for them all.

There was screeching and laughter. Parents helped their kids sit still, eat their cake, and play the games. It was normal, and yet not. It was a first friends birthday party for them all and we were nervous. We wondered about our kids being invited to birthday parties and how they will act once there. New situations can be stressful and in the back of our minds we know our kids will have their own reactions that can strain a celebration a bit.

One little boy got sad and hid under his chair. James' dad got under the table and was so silly he made the little guy laugh. By the end of the party, he was up and running around with the other boys. Pin-the-Tail on the Donkey quickly turned into turn around and fall on the ground and wail "Don't Wanna" (or just wail). The Super Stomp rocket launcher, though, was a big hit! We had some tantrums and flailing when it came to taking turns, but all in all, it was a good afternoon with a group of little boys having fun together.

James is enjoying his first school friend birthday party
Flash forward 13 months. James was invited to his first birthday party for a classmate (from the mainstream preschool). It was at Chuck E. Cheese, which made me nervous. James has trouble filtering sounds, but he loves video arcades. I was very glad we tried it, and proud of how well he did. James (mostly) sat at the table with the other little kids. He did not eat the pizza, but he had punch and nibbled at the pretzels and apples that I brought for him. He was one of the few kids not scared of Chuck E. and his friends; he sang a bit of Happy Birthday and ate the cake (first time -- he hasn't eaten cake before).

He was happiest because he was seeing his friends from school on a weekend at a new place. That made me very happy too.

Friday, January 29, 2010

Milestones: Conversations

James is starting to have conversations with us! His SHAPE assistant had been encouraging him at preschool in the afternoons to do this, and he has responded to her in a wonderful way. At home, it had not been showing so much.

But, it seems that all the past month's upheaval over finally giving up his naps, struggling with the BM part of potty training (it's happening but not consistent yet), and being a human tornado has also moved James forward. I have been told by many that babies, toddlers, and even bigger kids will sometimes take a step of 3 back and go through a rough period of time before making a leap forward. This is what I am hoping has happened with James.

This is what I see that is new:
    James is growing some more!
  • Conversations! This morning it was "I go to see Si'ter (sister) on sofa!" Before he would have run out without saying anything.
  • Using the games on his Vtech computer that we got for him 2 years ago. He's always liked pushing the buttons and hearing the sounds, but now he is really playing the games. He knows the alphabet, and it really shows!
  • Being a big boy and letting me know what he wants. This morning, he told me "I no like it feel" when I put on the cautionary diapers (we'd had some accidents on the sofa after breakfast) -- he then said "I go have unnapants? Please?" So of course back we went. He told me he wanted all new clothes, so he got that too.
  • How he is feeling. Now when he stubs a toe, crunches his foot, of starts to really feel the unpleasant side effects of holding his BMs for 2 days he can tell me "OW! I hurt! I hurt!" and, he can tell me where. HUGE breakthrough!
  • More affection. He tells people "I love you!" and lately has more hugs, kisses, and enormous smiles for his Daddy and I.

I am hoping for more conversations with James. He has got a funny sense of humour and I can hardly wait to hear his take on things.

Wednesday, January 27, 2010

Special Exp./Wordless Wednesday: Exploring

James crawls into a tree trunk
Exploring a tree at the Discovery Museum. Who lives here?

James is checking out all the things to see inside the tree
Many things to look at and touch!

James gets comfortable inside the tree
"I think I'll stay a while ..."

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

Tuesday, January 26, 2010


Talking to the person from the UCD MIND Institute has got me thinking again about our participation in the CHARGE Study. When James was formally diagnosed in 2007, our case worker from the Regional Center mentioned the study and suggested that we call to see about participating in the program.
James, January 2007; age 2

Back then, we had no idea what we were heading into (and a good thing too, or I'd have been tempted to wave a white flag and lie down for 10 years). We were concerned, upset, and wanted *answers.* Now, damnit! What do you mean, "we don't know?" Why not?

I called, got us started, worried about how I was going to coordinate these visits to UC Davis (3 hours, round trip) with my transitioning back to work from Family Medical Leave (FML). My hiring and working supervisor had left the company, the department head was pulling everyone back to their cubicles (I'd been largely telecommuting and meeting with clients down south), and ... well, wanted to see a different ROI, IMO.

Our team was losing people. It was not pretty and I heard a lot of sad stories while I was out on leave. My stomach was in perpetual knots and I felt like there was a large target on the back of my head.

It basically came down to this: my career, or my kids. It was tough for me (for a whole bunch of personal reasons), but I chose my kids. I loved what I had been doing. LOVED it. I'd worked darned hard to get where I was. It had been a personal battle against depression and other things to find something I really felt good about doing on the job and doing it. Very well too, if I say so myself.

But ... I did do it. I had my hurrahs and laurels and victory laps around the field. Now our kids needed me. Our family needed a stay-at-home parent. My husband and I talked it over. Oh I cried; we let go of some things. My husband signed himself up for a brute of a horribly long commute (1.25 hours each way if it's good & over 3 hours each way if it's bad); luckily, he also has a wonderful job, supervisor, department, and coworkers.

Then we went out to do the CHARGE Study. The weather was foul the months we had to make our trips. It messed up James' naps. I felt like crying some more when I saw my beautiful, sunny boy unable to follow and do some of the simplest tasks that my daughter could have done at a much younger age. James had his first blood draw. I think I still have some hearing loss from that session, as I held him in my lap when they did it.

But it did something else. It made me feel less helpless. I got to get out and talk with other people. People who had seen and worked with children with autism. I started feeling less alone. When I started feeling scared about what was going to happen, I could balance the not knowing with the assurance that at least we were trying things. We were helping put the target on autism, not the kids who are on the spectrum.

I had been feeling really guilty about being an older parent and possibly having done something wrong during my pregnancy with James. Looking around my while participating in the CHARGE Study made me feel a little better. There were younger (some much younger) moms in the same boat as I. We had a lot of company.

It now looks as though the study is recommending more autism research in the environmental arena. This is significant. What are we doing to our kids? Let's find out and STOP it!

Some random other lines of thought: I have heard some people who want a cure for autism. All I can truly speak from is my experience and own limited knowledge, and they lead me to think that the best cure is to stop it from happening before it begins. I truly believe that looking at where we live, things we wear, and what we eat is our best bet to finding answers and preventing many children from being born autistic.
James in the back yard

We don't just grow in a vacuum, everything affects us. I think our heady discoveries in the last century or so have led us to be short-sighted and go oooh and ahhhh over things like plastics, electronics, and man-made food additives that prolong shelf-life and betters a company's bottom line. It's time to pull focus and see what these things are doing to us, in addition to what they can do for us (and business).

I have read other parents swear by changes in diet bringing about radical improvements in their child's abilities/personalities. I totally believe this happens. I also see that every child is different, and this is as true for the children on the spectrum as it is for those not on it. There is no "one size/answer fits all."

There is a meme going around on FaceBook that really strikes a chord: "My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE!" I agree with this 100% because I see this in my son every day.
James, play with other kids at the Discovery Museum

So my thought for the day is take CHARGE! Look up the website. Google some information. Cry in your coffee (or beverage of choice). Then get out and fight! For our kids. For their future.
James makes it to the top of the Corw's Nest on his own!

Monday, January 25, 2010

Monday Evening: Epilogue

I've spent a good six hours today on cleaning & organizing James' room. Outside, it's still pretty much pouring down rain constantly, same as yesterday ...

Had a Jonas afternoon (see Anne Shirley) -- 2 respite care workers showed due to agency miscommunication. James howled and would not be consoled for almost half an hour (and he is a 2 minutes and done kind of guy). In the middle of trying to sort out the workers and calm James, the phone rang -- the MIND Institute was calling for some follow-up questions. I did answer them and put in our names for the next phase, which has just been funded.

Sorted out the respite care (for now) and finally was able to go back to James' room. I haven't spent time organizing and deep cleaning it since he moved to a big boy bed, 2 years ago. Ow. Lots to do. Once I got started, it was hard to stop. I ended up moving out 3 boxes of baby & outgrown things (sniffling all the way), tossing a big bag of trash, bagging up some outgrown things for his old preschool (lord knows we've used plenty of school things in our time), and moved around his furniture so that he now has a play area and can reach and put back his toys. He seemed fascinated.

Added bonus: he pooped in the toilet for me!!!!!

I do wish my headache would go away, though. Meanwhile, James is off to bed in his newly clean and organized room (clean sheets and all). Off to have some quality time with my daughter as I put her to bed. We already made up some new stories for Danger Mouse and Roger Rabbit. They involved lots of high-jinx and mayhem. I love happy endings!

Magic Marker Mondays: Getting a Feel For the Holidays

It's been a while since I've posted some of James' artwork. He has been getting better at sitting down and focusing on projects in general. He has grabbed at least 2 pads of paper and scribbled on every page. His sister did this at ages 2-3. Speaking of which, his sister has enrolled him in her school, KJS. She is starting to work with him on his letter and numbers. She is his hero. He is one lucky kiddo!

Anyhow, James' school ran a great holiday fundraiser, with crafts. James is not much of a sticker & markers person, but he did enjoy stringing and wearing a macaroni necklace:
Making a holiday necklace with his teacher

James shows off his handiwork
He enjoyed getting into baking pumpkin muffins to share at school:
James, making pumpkin muffins

And on New Year's Day at the beach, he got into the tactile sensation of the wet sand. He made sand angels. We had him help us make the new year date for the first time:
James, drawing Sand Angels it the Boardwalk

Making our mark on 2010

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

Sunday, January 24, 2010

Holland, Idaho, The Road Less Traveled, Amen

While reading, I came across a link to a great piece by Emily Perl Kingsley titled "Welcome to Holland." As Laura Shumaker notes in her online article "Autism & Parenting, Drive By Phone Calls," it's very apt for parents.

James may only have just turned 5, but I've had a few wake-up calls of my own.
  • The times when people ask him his name and how old he is at the park, and James either does not answer or makes his "ahhhh, ahhh, aaaaah!" sounds.
  • Hearing parents talk about Kindergarten teacher discussions when this year we are girding up to insist on full inclusion for our son, crossing our fingers all the while that this will work, and wondering which of the Kindergarten teachers will be volunteering to take full inclusion children, and when we'll hear who they are, so we can advocate for who we feel will be our best choice for our son.
  • Being moved to tears at the first play group my son had with a group of children, at age 4.

Taking deep breaths because I feel it in my bones that James will never fit into any of the check boxes or pegged holes by which a bureaucratic system runs. Forget Holland, some days it's Bora-Bora, the moons of Saturn, or the forgotten side road that everyone on the Rat Race Hwy passes by, but somehow catches the eye of my son.

Saturday, January 23, 2010

SOOC Saturday: New Year at the Beach

A group of friends from our UCSC college days decided to get together and head to the beach in Santa Cruz to ring in 2010. We could not get away for the overnighter part, but we did enjoy meeting up with them on the second day of the New Year.

Can I just say that I still love to drive HWY 17 when it's not choked up with traffic? It's beautiful and interesting, always. Then there's the thrill of leaving behind a huge metropolis and dropping from the forest in the mountains down to the ocean. Ahhhhhh! The flashback to our glory days is a bonus.

The kids are really good car travelers, although James is showing a tendency to get carsick on long (over 5 hours) or twisty rides. It only took us ~2 hours to get there and I kept a most sedate pace over the mountain. Therefore, we arrived just after 11:00 AM, refreshed and eager to get out there and walk.

The kids were super good as we walked from West Cliff to Saturn (Cafe) downtown. They liked the old pinball machine in the restaurant. We chatted with our friends while the kids fidgeted (James) and amused themselves (his sister, drawing). James ate the french fries and had some milk. He was totally not interested in their organic PB&J sandwich. He did eat the apple slices that I'd packed in a baggie.

We progressed down to Logos books. There, the kids started to melt a bit. So after a look at the kids' books in the basement, we walked back to the Boardwalk, where the kids had a good hour or so in the sun and wind, playing near the surf. The was much running, jumping, leaping and frolicking.

We let the kids take off their shoes & socks and run barefoot. James loved feeling the dry and wet sand on his feet and toes. Practically the whole time walking was spent with his hands in the "high guard" position and on his toes, springing along with a loping stride. His foot prints were a mixture of ten tiny toes and the balls of his feet and regular footprints where the sand got swampy.

Of course, a great deal of the time was also spent *on* the sand, making sand angels and drawing. Had to clamp down on the throwing.

It was a great start to the New Year.

Friday, January 22, 2010


The Queen of Windsor (or was the the Queen of Santa Rosa?) visited James' preschool earlier this month.

The classrooms all make a big deal of pushing their desks together and creating a royal banquet table. The teachers decorate. It is marvelous! The kids are given the option to dress in costume to meet the queen and feast at the royal ball. What a neat way to engage in creative play, teach table manners, and put a little zip in a month that has been largely cold, grey, and damp.

I love this picture because I see James being shy but wanting a hug from his queen, then getting totally sidetracked by becoming fascinated with her gloves.

Wednesday, January 20, 2010

Irony, a New Definition

Irony is, missing the presentation on the cool Kindergarten program that we feel our son could benefit from, given all his wonderful progress this year, because ... we are still wresting with the BM portion of potty training.

The latest edition did us all in before the presentation started, by which time my son was passed out in bed, having passed a ginormous ... payload (thank goodness his sister had slapped a diaper on him after our last try to use the toilet). He never even twitched an eyebrow as I cleaned him up and tucked him away for bed.

I have called the Regional Center and asked for a Behavioural Consultant for help. When life stops because of this issue, then it becomes Not Okay.

Saturday, January 16, 2010

All Plugged Up & Don't Wanna Go

For the past month, James has been waging a "not gonna poop" campaign. It's been ugly. It started while we were on vacation (of course) and each skirmish lasts about 3 days.

I have tried:

  • prune juice (he throws it up, and everything else that's near his digestive tract)

  • more water and less milk/bananas, etc

  • suppositories (eeewwwwww; and he still won't poop)

  • Miralax (more than the pediatrician said to use)

Recently, his wonderful SHAPE assistant had a breakthrough -- she downloaded a game onto her iPhone for him and kept taking him to the bathroom. He could only use the game while sitting on the toilet. He pooped twice for her. Yay, wonderful SHAPE assistant!!!

Will he do this for me? Of course not! I am his mother, and I don't have an iPhone. Duh! I am seriously thinking of writing a grant to cover the cost of an iPhone and it's monthly fees until he has passed this stage and is successfully potty-trained.

I suspect this is because he's fighting the last part of being potty trained, plus the sensation of passing his BMs on the toilet is freaking him out. The delight of testing limits with teacher and parents is an added bonus, I am sure.

A lot of well-meaning people have suggested offering special food treats or toys for when he has successful bathroom transactions. I am here to tell you all thanks, but James does not operate that way. I wish it was that simple.

Saturday, January 09, 2010

Social Stories: Draft

For James' Birthday:

My name is James.

I am four years old.

Soon, I will have a birthday.

A birthday is a special day to remember the day I was born.

On birthdays, many people get presents, birthday cards, and a cake.

Sometimes, they also have a party.

A party is where people come together to celebrate something.

This year, I will have my family at my birthday party.

When I was born, I was a baby.

This is what I looked like on my first birthday.

This is what I looked like on my second birthday.

This is what I looked like on my third birthday.

On my fourth birthday, I had a party with my school friends at a pizza restaurant. We played games.

This year, I will be five years old.

Now that I am five, I can ...

Friday, January 08, 2010

Weekend Project: Social Stories

As part of James' preschool program, parents are invited to monthly presentations by teachers and clinicians, to better support the children and their families. I am here to tell you that it's a great resource. Even after almost 3 years and repetitions, I still get something valuable from the sessions.

This month was no different. This morning we heard about Social Stories, and I was struck anew by how helpful they can be. I have started a Birthday story, because James is turning 5 this weekend, and this will be fun for him to understand that he has a special day coming up.

Five years ... yikes!