Friday, September 30, 2011

Changeable As ...

James has been having a tough week. Focusing, staying on task, and transitioning are not going as well as they usually do. He gets upset more easily. I hear him at night, more restless than usual. His nose is running and he has a cough, but no fever -- allergies? Could be -- there are vineyards on back of us, and they are busy trying to get in the crop (VERY early in the morning) after another weird summer. He is definitely more fretful than usual.

Then I looked through my camera pics over the past week and saw something else - extreme weather swings. Last week we experienced 100∘in dry heat. This is very uncomfortable for James, who runs hot in general. He literally melts down in hot temps. We made a couple of runs to the frozen yogurt place we love so much, just to feel a bit better after school. The extremes from going between a playground that melts him into the cool, air-conditioned classroom and home can't be healthy.

We had a low-pressure rain system mosey on through over last weekend, dropping temps and some precipitation. Come Monday, we were back up into the 90s with a little humidity. The grape harvest behind us swing into high gear, kicking up dust and who knows what else. Then they fertilized with something natural, or it got so hot we could smell the stables from down the lane in back of us -- either way,  it didn't smell too purdy. James had fun trying out all the shorts his cousin just handed him down. He started complaining his throat hurt as his nose ran more.

This morning, he picked out a really loud (but cheerful) pair of blue-and-green plaid shorts. This is what we saw when we looked outside:


From talking with other Moms and reading their online posts, it seems as though the weather can affect childrens' behaviour -- especially if they have sensitivity issues. Research studies do not back this up, but that doesn't stop me from thinking that there really might be a connection. I've come to view scientific discoveries as a work-in-progress ... but I digress.

We have a birthday party to attend this weekend, but then I think we're taking it easy. Happy fin de semana, regardless of the weather!



Thursday, September 29, 2011

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.

Wednesday, September 28, 2011

Special Exposure / Wordless Weds: Visitors

Waiting for the RNs to finish in the room so we can visit Apu on the stroke recovery ward.

Luckily kids bring their own sunshine. This particular part of last summer was rather grim.
 

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


and ... Wordless Wednesday            

Tuesday, September 27, 2011

Autism Families: Becoming Represented

Hooray for the members of Congress and Senate for passing the Combating Autism Reauthorization Act (CARA) of 2011 by unanimous consent. Waiting to hear that President Obama has signed it into law. We need more research so we can find better treatments for our loved ones and future generations of children and people on the Autism Spectrum.

More support for research might also give us answers for how we might be able to prevent Autism from occurring among our children in such devastating numbers (currently 1 in 110 children; 1 in 70 boys).

As a long-term resident of California, I have been urging Governess Brown to sign SB 946. Thank you, California Senate President Darrell Steinberg for making this a serious priority.

Monday, September 26, 2011

Magic Marker Monday: Colourful Reading

I have to say that between Speech Therapy and his First Grade Teacher, James has some awesomely creative books to read. Recently, he actually made the book he was then assigned to read. I absolutely love this idea, and can see it working in many different ways.


A Real-life Reading Rainbow

It looks like the teacher printed out several sentences on a sheet of paper, which the kids then cut out, matched, and glued to the appropriate "crayon" page. Very good for working those mad scissor skillz, my friend!

The pages are then placed in the "box," which is more like a simple pouch made of 2 pieces of construction paper.

James' assignment was to then take his book home and read it four times. Could be one person, could be four different people. The listener signs off after each reading. He's read once to each of us at home, which leaves room for reading to his grandparents this week. He is so excited to be the one reading to us for a change!

I can hardly wait for the next one to come home.

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

Special Needs Blog Photobucket

Saturday, September 24, 2011

Metaphor

Taken SOOC in the maze at the end of the Alice tunnel, in Children's Fairyland in Oakland this past summer.

Kind of a metaphor for life, parenting, and dealing with Autism. It's unexpected, exciting, confusing, and at times a bit scary and frustrating. There's always at least 1way out, and friends to find along the way.

Trying something new this week -- joining the SOOC action over at Marvelous Mommy's blog. Come on over to see more or join in!

SOOC Saturday

Friday, September 23, 2011

Changings Seasons and Routines

Happy Fall Equinox! Even though I come to dread the cold, wet, dark days of Winter, Fall has become my favourite time of year. The smell of crisp change in the air, the brilliant leaf colours and last flare from flower beds, the sounds of leaves being crunched with glee all life my spirits. The grapes are being harvested in the vineyards, the Farmers' Markets are flourishing, and the kids are starting to buzz with excitement of Halloween, Christmas, and both their birthdays on the horizon.

  

This morning also saw another change in our morning routine for school. This is the first year I've personally had to deliver both kids to their respective schools in the morning, and I am struggling to find success. First I started with dropping off Big Sister -- Third Grade, after all, is important stuff!  But that left me struggling to get James to school on time. It also left me going in circles, because most of my errands are down near Big Sister's school, not James', which is near our house.

So I talked with James' Services Coordinator at school (because I can't just leave James alone on the playground - he'd wander off), and arranged to have his aide waiting for him 10 minutes before school on the playground so I could flip the dropoffs. On the days that we made a timely connection with James' aide and made all the stoplights, Big Sister could just be on time for school, if she scooted across the campus quickly enough. But guess what? That didn't always happen.

Then this week, they started tree-trimming on the road between their schools and closing lanes of traffic, making cars wait. Guess what? I got called by Big Sister's teacher. This isn't working he said, in the nicest way possible. Could we try switching the dropoffs again?

Sigh. Yes. Luckily, Big Sis loves her new teacher, class, and finally, her "new" school. I told her that she needed to get ready 20 minutes earlier to do this and get James to school on time. And kudos to her, she did it. James is actually easy to get ready for school. He changes clothes in 2 minutes flat and brushing his hair takes about as long (he hates it, but it's short). He actually will scoot out the door earlier in the morning if it means he gets a longer ride in the car and can wave to Big Sis at her school.

Big Sis wins because she's early, and can take her time and talk with the kids at her school. James wins because he'd rather be dropped off last. His aide and teacher win because there's more time for them to prepare in the morning and touch base with me about how James is doing. I get to do more driving, is the only downer. But that's okay, because I can change too.


Thursday, September 22, 2011

School Photo Day

I walked James in to school this morning, across the ghostly-white, foggy playground, to meet his aide. All around me were other parents, hustling their kids along too. Many of the boys sported hair that was precisely cut, combed, and gelled back (or up in a mock Mohawk), as well as crisp polos or button up shirts. Yes, school Photo Day was upon us once again.

Oops.

I completely spaced Picture Day -- thank goodness they had signs up announcing it at his school this week or I'd have really been unpleasantly surprised. I've not been feeling well this week. James hates having his hair washed and he screams like a banshee and thrashes when I try to cut it; so with me feeling unwell, I left his hair alone, lest I give him a horrible hatchet job in my hazy state of mind. Yesterday we were at a doctor's appointment after school, 65 miles away. After 45 minutes of working with a physical therapist we drove 65 miles back in traffic, which means we were both a bit dragging this today. He does not do crisp shirts and he did not want buttons this morning (so no polo top).

Even better, I could not find his order slip and I had to leave directly and drop off his sister at her school and do the weekly grocery run. Could my preparation have been more pathetic? Luckily, I had my checkbook in my purse, so I could do my two errands before swinging by James' school on the way back home. The nice ladies in the office showed me where the extra Picture Order Forms were and called his classroom to make sure they were still waiting to take the photos (they were).

I walked slowly back to James' classroom (I've also tweaked my hip and knee - fun times!) and peeked in the door. There was James, sitting calmly in a semicircle reading group, in front of his teacher and reading! Why am I excited? It was just so NORMAL! His teacher warmly welcomed me into the room, thanked me graciously for his order form and check, and asked James to take a turn and read for me. He was flustered, but complied. I was so proud. Especially when a reading buddy joined in, read a wrong word, and he gently corrected her.

Beam, beam, beam.

Okay, James: I am over the lack of styled hair and dress shirts. Sometimes what you can't see in a class photo can make your day for years to come.

Love Always, Your Mom

Wednesday, September 21, 2011

Special Exposure / Wordless Weds: Floortime For 2

This was the scene I walked in on, one morning last weekend:


And here's some of the conversation:
James: "Look! I made Rudolph!"
Big Sis: "No, you made the sun"
James: "Ohhhhh. Let's make some more!"
Big Sis:" Okay, let's make a 2!"

They kept it up for over half an hour. I sat down around the corner in the next room, grinning and enjoying the moment as I listened in.

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, September 20, 2011

How Sweet It Is!


This boy is reading!!!

Combs and New Discoveries

I read about some exciting research that came from the MIND Institute that two distinctly different types of biological Autsim have been studied and confirmed. I find this both fascinating and exciting, because it confirms some of my experiences with James and gives me hope for the future.

How many of you have heard the phrase "You've seen one person with Autism .... and you've seen one person with Autism"?

 *Raises hand*

It's felt so true to me. Especially from the days when I first started to really admit to myself that something was not right with James' development. Everyone had their opinion as to "was he ok / was there something wrong," with many people of the former opinion than the latter. Right up to his pediatrician who told me "He can't be Autistic - he looks you in the eye."

I could see their point, and still can. James, while exhibiting some classic Autistic traits, has always loved people and openly shown it.

Even during the scary period of time when he'd "zen" out and stare off into space, not responding to his name or a hand waved in front of his face (and we became scared that he might be having mini seizures) he'd gravitate to a group of people hanging out and socializing. He loved playgrounds and never retaliated with force or biting when some of the kids played roughly in the sand box or rocking animals. He had gorgeous, enormous blue eyes and he'd smile so sweetly at you he'd melt every heart in a 25-foot radius.

And yet ... I felt a lack of connection with him. He was spookily calm, and made noises like a squawking parrot rather than a toddler to communicate. His fingers and wrists splayed at odd angles, almost frozen. He could hear a pin drop from halfway across the house, loved music, and his big sister. He did not line up his toys, yet he did repetitive motions and loved to spin things.

At the CAD Clinic, it was informally thought that James would test at Pervasive Developmental Disorder-Not Otherwise Specified (PPD-NOS), but in fact he tested with more severe needs as Autistic Spectrum Disorder (ASD). One of the clinicians explained the findings as James having both strong strengths and weaknesses, with the former being the teeth of a comb and the latter the comb's gaps. In some places the teeth (strengths) had no gaps, in other areas, some teeth (strengths) were missing, forming bigger gaps.

I like the comb analogy. Do you know how many different types of combs you can find at a store?  Think of all the combs you've had -- many different types, yes?

Now just think if further research enables us to identify and categorize Autism as we now can tell the difference between a pocket comb, a pick, a flat-top styler ... and then builds therapies that match them and helps those on the Spectrum to led lives that are as happy, productive, and independent as possible. Oh, yes, I am getting excited all over again. I think this is on the right track.

Monday, September 19, 2011

Magic Marker Monday: Magic Hands

One of the things I love about kids is watching how they interact with their world and use everyday objects uncommonly. As James grows and becomes more engaged, I take special delight in watching him play spontaneously.

Like the visit to our Town Green, where he played with the water in the water fountain in a new way. James started his relationship with these enormous structures years back by falling in the water (poor coordination). That did not deter him from coming back to try sticking his hands into the water and trying to walk along the bottom (which as a good parent I try to discourage).

Last year he moved on to throwing handfuls of gravel into the water the moment I wasn't looking. We took a break until he could control himself better. Then he ran races along the top of the expansive walls and mastered stepping across the intermittent steps from one side of the fountains to another. Hooray for advances in foot-eye coordination and balance! He started to pick fallen leaves out of the water and tossing them back in. Definitely better than gravel, so I usually let this pass. The look on his face as he sends one over the "waterfall"? Priceless.

This Summer, James started noticing that he could "paint" with his wet hands. I helped him write his name, and he had fun making prints with his hands. Pure magic for about 10 minutes!



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

Sunday, September 18, 2011

Growing Pain

Oh my heart. Look at this photo from last September (ignore the evil flash):
James, playing with hat and stickers

See those pant cuffs? How they are almost under his feet?  I tried to see if he could still wear these pants in early August, less than a year later. He could not even get them on. In less than a year he went from a size 5/6x to size 8-10. We are so lucky to have older cousins who give us hand-me-downs!

I miss my baby, but thank goodness you can't take the goofy out of my guy. That's still going strong.
James, playing with Photo Booth on his Nana's iMac

Farmers' Market Sunday

Our town has a lively little Farmers' Market that I've come to love. During the summer it's held twice weekly, but we've made the longer-running Sunday morning one Our Market.

First, I really like Farmers' Markets. They recall random times of picking up fruit fresh from the fields and orchards of the Bay Area when I was a kid. Thanks to my Mom, these seemed more like fun excursions than a chore. Also, I learned to chose my foods differently when I lived in France over the course of 2 years in my 20s. The marketing & cooking mentality shift from weekly Albertson's to as-needed les marchés en plein air excursions was profound. In a good way. And it's nice for me to be able to bring good things from my past life into my current one with children of my own, including one on the spectrum, which has thrown us into a parallel universe, so to speak.

For several years, I was desperate to find things to do with James, my early riser. Usually that meant getting him out of the house, as he wakes ready to go and does not do voice modulation well. Our house does not do sound prevention well, either - quel désastre! So then I stumbled on the Farmers' Market.  Our markets don't start early, but if we first went out for a drive (with coffee!) or playground trip, finishing with the market made a great icing on the cake.

I love being out among people, seeing fresh produce, and smelling good things. James loves the people and the music, because the local Farmers' Markets have live musicians. This summer, I made more of a push to have this be a weekly event for the kids and I. We do enjoy it so.

The bread lady, as we call her, knows us well. She and my daughter share a name, which is a common one with an uncommon pronunciation, which gives them both a thrill. Some day, I promise myself I will indulge in the roasted peppers - mmmm!!! We get ideas for jewelry, crafts, and cooking just by strolling past the stalls. We see people we know and socialize. My daughter pets as many dogs as she can. Both kids love to play in the town's water fountain. I look at all the colours and shapes of the flowers and plants, and think back to when I had time to paint and draw them. For now, I capture them on film.
   

James loves the fresh sour dough ficelles and the music. Over the course of the summer, I have successfully gotten him to watch and admire the musicians from a discrete distance. Before, he'd go right up to them and talk, sometimes touching their arms or instruments while they were playing. Good heavens, he was quick to nip in and do that! Fortunately, they were very good-natured and did not get upset. Now when I remind James that he can watch near the chairs or the walkway walls, he says "okay" and remembers to do it. The trombone still delights him from across the Green, though, and makes him dance whenever he hears it.

The Farmers' Market stays in my mind for days after the event, as we use up the good food that we have bought, in dinners and school lunches. I only wish it lasted throughout the year.


You'll never know who you'll see at the local Farmers' Market!

Saturday, September 10, 2011

No Grieving in This Autism House

I was reading articles online and came across a piece written by Susan Walton, regarding Autism in the family and the grieving process. In short, it is a rallying cry to view a child's diagnosis in a more positive light, rather than an occasion to grieve. Personally, I agree.

James jumping on his toes --
he sees the spinning rainbow
wheel outside.
I remember the time leading up to James' diagnosis as a haze of anxiety (something wasn't right), stress (job and family worries), and extreme frustration. I'd been worrying why I hadn't seen the big developmental jump at 18 months that I had with his sister; he still was not talking; he was beginning to scream instead, and even bite. His daycare, while concerning me about an overall lack of safety, did step up and tell me that his behaviour matched some of the Red Flags of Autism and that we should have him checked. His pediatrician then actually told me that James could not be autistic. "He can't be, he looks you in the eye," he insisted. True story. I had to insist that he call in a referral. Parents -- you can insist. Please don't hesitate to do it to help your kids.

So to hear from the Regional Center caseworker that there were indeed some developmental delays was not completely unexpected; it was kind of the bad news I'd been waiting to hear. I immediately requested and took 6 months of Family Medical Leave and plunged into HR hell with my employer's payroll department. Our family life was in limbo while we ferried James to five therapy sessions and a social playgroup weekly, waited five months to get get into the CAD Clinic for an official diagnosis of: Autistic Spectrum Disorder.

He's a sweetie, but look
at how he's holding his
hands & fingers ...
My husband and I were stunned. along with the rest of our family. Now what? What does that mean? Will our son ever talk? Will we ever feel the connection to who he is? How do we make sure he gets the help he needs to develop? These were some of the questions whirling in my head. Then I got a letter from our preschool, notifying me that, per paperwork submitted when big sister transitioned out, a place had been saved for James and they were looking forward to having him start in January, after his 3rd birthday.

By this time I knew James would not benefit from this program, even though we loved the staff and it was THE preschool where most parents wanted to send their kids.  I had to call them back and explain that James would not be coming. And why. Also, that's he'd be instead attending the Special Needs Preschool through the public schools system.

The staff was wonderfully sympathetic. Almost too much. Several advised me to grieve for "the death of a dream." That's when I pulled up, so to speak, and thought more clearly. Wait a minute. Why should I be grieving? At least I knew what we were dealing with now. And from reading about the range of impairments that could happen, I knew that James was lucky because he was healthy and liked people. He did not have to take any meds. There was a lot to be happy about, it seemed.

Since then, I have heard the advice and questions about grief relating to life with Autism. I still don't get why I should be grieving. We have our son. He is healthy and making progress, not suffering from something terminal. We have our moments of disappointment, semi-despair, and frustration ... but we have even more times of love, fun, and adventure.

Normal does not guarantee a happy life. Since we started on this journey, I have learned a lot about wanting what I have. One of the biggest gifts is appreciating how happy our sunny James is. I cannot count the times he's put a smile on my face with his sweet and mischievous ways. We celebrate major breakthroughs that may look like simple things and it carries over into our overall accomplishments as a family. So, no grieving over that diagnosis in this Autism house.