Shabam! Fall. Triennial IEP. Too Much.

Counting down to James' triennial IEP. So not looking forward to it. He is supposed to be in 5th grade. Everything has been coming home marked "4th Grade." I am being told that everything is blended. Indeed? Why is it all marked 4th grade? When did who decide to hold him back him a year? Because I sure as heck was left out of that loop.

James is pretty happy. They have him doing 2nd grade math that he mastered 2 years ago, adding 4 addition math problems a night. He had been doing long division last year. He is playing games on the computer a lot. Gah!

The ElastiMom Mantra Explained

Fall is here, bringing milder weather and the promise of some rain and relief from our high threat of fire. James is excited for Halloween. He will be the only trick-or-treater from our household this year. For a change, he has decided he wants to be Mr. Incredible (and so he is!) -- I am thinking we can get away with using his Incredibles PJs and some long red pants ...

Life keeps throwing my tough things. I wish I could be like Elastigirl and be Super Flexible and punch out the IEPs. I wish I had Edna Mode on my side. She could make me an ElastiMom Super Suit to wear to the IEP meeting and prevail for my kiddo.

More Testing, More Reinforcement

GoAnimate has become the bane of my parental existence. I am not even going to link to it. James has been watching productions of Caillou, Dora, and other benign cartoons that have been spiced up with police action, arrests, and swear words. All of which he gleefully scripts at totally inappropriate times. The breaking point came when he used the swear words during a parental disagreement and then tried to physically get into it, the way the GoAnimate cartoons do.

Result: Time out for rest of evening, no iPad for over a week, and a letter of apology. Plus, several billion conversations around "Why can't I GoAnimate? Where is my iPad? When d I get my iPad? Do they (GoAnimate) not use bad words? Why? What are bad words? Why are they bad? Where is my iPad? Do I get it back? Today?"

Things were elsewise going fairly well ... until I checked on James this morning to find he's using his old white Mac laptop to watch GoAnimate. Guess what else he is going to have to do without for a while?

He is back to watching his DVDs and I am trying to up his writing and unplugged activities. This is working right now, but in another couple years I am sure it's going to be a whole other ball game.

Too Much Everything

James' school held it's annual carnival on campus. It was a day full of games! Food! Activities! Running! Outside! Also: Noise. Sensory overload.

Yup, he spend a good chunk of the day in the resource room.

Not feeling great about the all-day field trip to SF coming up. I had planned to chaperone, but being sick for a week deep-sixed all my PTO. I hoped to plan a strategy with his aide, but guess who has been sick with the bug we had? I feel bad about that, as this bug really knocks you off your feet and makes you feel weak and woozy for at least a week. I am very nervous about the field trip, which is in 2 days.

Now his teacher thinks I am going on the trip, due to a miscommunication. Let's see: all day trip through the Academy of Sciences, tons of noise and fun with classmates while on foot, with things he will find interesting (but which will overwhelm him at times)  ... with a long bus trip to and from San Francisco, and an return ETA of about 4pm, which is 1.5 hours longer than a school day.

Oh, and it's supposed to be hot. James melts in heat and melts down in traffic jams. Plus, when he's tired, he's more prone to car sickness.

Common sense says cancel. But it's not fair to James, having to miss out on the trip. It cost a lot of money too, which I can't get back.

I'm giving it through today to come up with a miracle solution .... failing that I will have to figure out a Plan B for James on that day. Not setting my guy up to fail, especially for something that should be fun.

Special Exposure / Wordless Weds: Endurance

Third night of little sleep and a lot of discomfort. I finally broke down and administered an enema this morning. It produced a little result. Encouraging, but I wish it was more immediately helpful.

Our brave guy is on the sofa, trying to keep himself occupied. It still hurts.

Why, oh why, oh why, oh why does his constipation keep coming back and being so bad? I wish I knew.

I keep trying to be calm and patient. And James shows me the meaning of endurance.


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

Daydreaming of Better Behaviour

I was reading an article about how different (and better) things could be with moms running the country than our current congress. It had me nodding in agreement because many times, while raising our kids and trying to instill honesty, responsibility, and compassion in the children I am caring for ... there's a bitterness in the back of my mind that comes from knowing that many of the people elected to represent their fellow Americans largely chuck all that out the window, preferring instead to bicker, grandstand, and name call.

Many are the times I read an article describing to me incredibly irresponsible, dishonest, and uncaring behaviours by those who, I am sure, were raised to behave better, and find my hand itching for my phone, so I can call their mothers. Part of me would dearly love to say "Did you know what your son/daughter is doing?" Now, I know that parents are no longer legally responsible for the actions of their adult children. That there are some who get a good upbringing, and chose to follow other paths.

This is an overly simplistic  mom dream of vigilante parenting gone back to my roots. Indulge me.

• I would love to be able to Pink Slip members of Congress. Capitol Hill would be swamped in a pink snow storm about now.
     
• There would be several new Time Out rooms, and they would consist of white walls, a hard chair, and one light bulb. Maybe a desk, where they could write their notes of apology.
     
• There would be lots of community service assignments to womens' shelters and rape crisis centers, with lengthy essays turned in afterward. Any spelling or grammar errors would results in corrections being written 50 times each on college ruled binder paper.
     
• Insults to the president would trigger mandatory lavatory cleaning at a large public transit agency.
     
• Not doing their jobs? No salary for that week.
     
• Did well at something? I'll put it (or a photo of it) on my fridge and brag to all.
     
• Did you steal or misuse money that was not yours to spend? Pay it all back, and you are so grounded for the amount of time that corresponds to the level of crime. Say hello to the Time Out room, because you will be writing a lot of letters of apology. Also, you are Habitat for Humanity's new poster child for volunteer worker.
     
• Shunning and Shaming would be new departments that have control over campaign and election funds. This is an overboard daydream, remember.
     

Oh, I could go on. But that's more for a Moms' (or Parents') Happy Hour. Meanwhile I am doing my best to show the next generations that getting along, problem solving, and being responsible/accountable are the indeed the "grown up" way to be.

Pulled Apart

Autism has long been linked to puzzle pieces. What causes it is one of it's biggest puzzles.

However, lately I've been feeling that puzzle paradigm in a new way:

Jame's lovely Mothers' Day portrait, going to pieces.

This is me, being pulled apart by in pieces:

• end-of school parties
• input meetings for teachers next year (because it's been me trying to get this done and things not working out for almost a month now)
• follow-up to get organized for summer school (because that's all on me)
• prepping for a trip that's perfect timing for the one person who's not traveling
• all the cleaning and organizing for the trip, plus --
•  -- catching up from when my daughter was sick for a week (still)
• dealing with the cherry tree bounty & messes
• end-of-year cards for teachers& support staff for James (5 of them)
• trying to work with a new respite aide because --
• -- our wonderful aide of 3+ years is moving
• prepping kids for a new aide
• dealing with a respite care agency that's been turned on it's head and has gone from not calling me to wanting a piece of my time once or twice weekly to do things that never got done or are new state requirements; shot me
• absentee voting for while I am out of the area on our trip
• trying to get haircuts for us all (that also got knocked out by daughter's illness)
• grocery shopping
• yard work
• doing everything a week ahead of time so bills and weekly chores don't get skipped while we are out of town
• trying to finalize trip itinerary
• still trying to get payment on  invoices for work done and billed last year
• and: dealing with the fact that I now have an all-electric car and no charging stations in our town; this one's a long story, and responsible for large parts of my right hand falling prey to excema.

And I know I am forgetting stuff.

Gah!

Special Exposure / Wordless Weds: Flowers

So yeah, life is stressful. Tax season is breathing down our necks, and it's a little uglier than anticipated. Gas is up and construction makes car travel more frustrating on both city streets and our one freeway to everywhere. Our trip to Disneyland has been nixed twice and now both kids have hit setbacks in school and behaviours.

So what's making Wednesday special this week for me? Spring flowers:

 Breathe with me now: mmmmmm ... ahhhhhhhhhhhhhhh!


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

Oh My Stinkin' Heck

I've been keeping my head down lately. Things have been hitting me nonstop. I'm not completely organized, so I am constantly checking and double-checking the ever-growing piles and stacks of paperwork, scribbled messages, calendars (office and kitchen), and email account (about 1900 messages in just the "In" box). Heck, even if I was organized, it wouldn't help too much, because things keep getting switched on me, or I find out something else that needs jumping on, STAT.

On the heels of the last round of the flu with James' sister came state testing for her. April was not only Autism Awareness month and our second Autism Speaks walk, it was the start of signups for summer programs. After one summer of leaving things too late, I obsessively plan for the day the Summer Program Schedule come out and sign the kids up online before the offices open the following Monday. Somewhere in there, James started waking up six times a night, one of which was to tell me that he'd pulled out his loose tooth. I am waiting to do the Tooth Fairy thing because shortly after that, he swallowed a nickle and a penny right in front of me, before I could stop him. Heck, maybe the Tooth Fairy will bring him an IOU or coupon for Funky Monkey tickets and save me some worry.

Then that Easter thing, with egg hunts, helping the bunny deliver after midnight, mailing cards, and making food to share at a family gathering. Followed by getting IEP revisions pushed through for James so he could go to summer school. Not that anyone at the school pointed out he needed this, I spent *several weeks* playing phone tag with his services coordinator, asking how summer school worked and how to get James signed up for it. I had to insist. I had to follow that up with several office visits around the system to shepherd the paperwork through the system. I truly do understand that the state is bleeding the schools dry, but bite me, James needs summer school.

If I hadn't been so obsessive about planning summer programs, I'd have been too late to get his IEP amended for an extended school year and thus he'd have missed out on a month of summer school, speech, and O/T. This reminded me that I needed to investigate classes and teachers for the next year. Still working on that one, as well as trying to have James' aide work with him in first grade.

With all this fun going on has been Teacher Appreciation week, PTA volunteering, an Art Docent session, daily Yard Duty shifts, and Other Schtuff (the parts where I get to work in the garden are rather fun). It can take me 3 days to get to a shower, four hours to clean a countertop, and six weeks to return a phone call. The Christmas books finally went out to the in-laws just before Easter. Oh, and my husband wants me to fix the showerhead in our bathroom and prepare for a Yard Sale. Actually, now is a great time to do it, because the we have a brand-new water heater. The old one sprung a leak the night before Easter. Which also means that I had to re-arranged and start cleaning out the garage to accommodate that little surprise project.

I tell you, the fun just never ends. And this is just what I can write about in 30 minutes. There's a lot more going on, and most of it's complicated.

Ever Have A Few "One of Those Days"?

I lost the bag of small candies that were going on some class Valentines, but I found the remote control that's been missing for over a week. It was up in a dish cupboard, hidden in a mixing bowl. Um, Okay ... perque demande perque? It's just a symptom of what's been happening around here lately.

We had a great start to making class Valentines. Then my daughter came down with the flu and James was channeling his Inner Tigger. I had work to do on 2 websites, a report to write, and lots of email to keep things rolling. Thank goodness my husband could take him out for several hours yesterday, school is back in session, and my mom has kindly offered to care for my sick one for a large part of today.

Every 2 minutes, someone was either calling for Mommy or calling on the phone. Every night, I'd get rousted out of sleep an average of 3 times. Which means don't interrupt me as I go on Zombie Mom Autopilot, or we'll be eating socks and sorting mac & cheese ...

I haven't gone to the gym because I've got cuts on my feet (don't ask). My body has seized this opportunity to embrace entropy. So I try getting in some exercise at home and take a shower, only to find out that the showerhead should not be used until it gets cleaned and a new filter installed (no, don't ask about that one either).

I got a lovely new lopper and used it abundantly. Now I need to keep stuffing our green bin for over the next few weeks. Oh, and surprise! Now we're suddenly in Rain Mode for just that time frame. But it does smell good outside. However, because I dropped my son off in all this aquatic renewal (aka: rain), I need to get a different coat and shoes (oh, and pants too) to wear to an advisory board meeting.

As for those candies ... do the kids really need more sugar? Oh wait! Extra individually packaged jellied candies leftover from Christmas! Never mind, I'm good to go.

100 Days, From a Distance

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

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

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

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

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

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

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

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

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

It All Went To Pieces

I was excited about yesterday. I had boldly planned to go out with a friend after the kids' dinner, booking respite care. My first at a brief night outing. I should have known it could not be so easy.

First, the regular person could not make the evening time. Then they found a new person. I explained that (1) I don't like leaving the kids alone with someone we've all never met before and (2) I've found it's a much better experience for everyone if a new respite care person comes over and visits for the fist shift, getting an orientation and both of us kind of feeling out if this will work out.

I asked if this new person could possibly come by the house for an hour some time the preceding weekend so we could do this, otherwise, please cancel the request. The care coordinator said he'd check and then get back to me. He never did. I know I should have called to follow up, but frankly, I'm tired of that. So I just assumed it was a no-go. I called my friend to see if getting together at my house would work, with the kids playing in another room and some refreshment here. Sure, she said. Cool, I thought.

Flash forward to yesterday afternoon: I moved up homework in anticipation of a slightly moved-up dinner and set up for the kids' activity. I cleaned the hall bathroom. I was on fire. My friend called. Her child was sick, she was sorry, but had to stay home that night. I was bummed, but hey, we could all relax, and I had a nice red wine. That's always nice to sip. Wait ... who's that at the door?

Oh yes, the respite care person. Evidently the coordinator never called her back to explain about coming by on the weekend or not coming tonight. It gets better. They didn't even brief her that she'd be caring for a child. Never once mentioned autism. We both looked at each other, refraining from rolling our eyes at the ceiling and yanking at our hair in frustration.

Then I invited her inside and asked if she wouldn't mind staying a slightly shorter amount of time and doing a kind of orientation. She was fine with that. She asked some good questions, was calm and friendly with the kids, and took the snafu well.

I am calming down still before calling the respite care coordinator back. Good God, Almighty, how hard is it to give proper info before sending someone out on a job?! I temped for almost 15 years, across a variety of jobs (although not in the health care realm). I do know a bit about being sent out on an assignment.

I am also drafting up a list that I will be hand-walking to these people, so they can staple it on the folder of my son's file. I think I'll put it on screaming yellow paper to boot:

When contacting a new worker to provide respite care for my son, you need to communicate the following:
(1) My son is a child.
(2) He is on the autism spectrum.
(3) While he has challenges communicating verbally, he understands what you tell him, even if it doesn't always look like it.
(4) Because of the above, I need to have a 30-60 minute pre-visit with new respite care provider to give them an overview of how to care for James and to see if the new person is a good fit with the assignment (& vice versa).

So while things mostly worked out, the original plans and evening fell completely to pieces. And I missed out on some good red wine to boot. Okay, now I'm pouting.

I Picked Up the Phone

Here's something I've noticed. When things get tough, it become exponentially harder to ask for help.

I don't know if it's depression, the years growing up in a family that says yes to "can you ...." and no to "do you need ...", or the quasi-despair that comes over me when I try to imagine how to frame my request to people who mean well but have a life without autism issues.

Common sense goes right out the window. I feel like I am carrying weights with me and I can feel my forehead creasing like Roman blinds. I stop answering the phone, returning emails, opening letters. I don't care what I'm wearing and I read about 2 dozen books a week. Re-read them, because I don't go out. Going out somehow evolved into Getting Everything Done Just Right, compiling a major To Do list, assembling half a dozen items into a bag so I can take care of things along the way, and needing to lose 15 pounds before I can put on non-funky clothes and go anywhere. Kind of like those dreams where you run and run, and keep missing trains, dropping things, etc.

And it's not like people haven't noticed or try to help. Like a doofus, I just keep saying "no, that's okay, but thanks." I am becoming aware of just how much time has disappeared into this kind of white fog, and it's unnerving.

So I have started to be better about not thinking and jumping outward more. I pick a project a week around the house and focus on that instead of a book. I sit down and play with the kids a little more. I am going to the gym and working out, even if it means that I'm the only one there sweating my stuff in jeans and a t-shirt & ballet flats (because I can't deal with gym bags at the moment). I've been finding things I'd like to do. Me. I. For me. And then doing some of them. I've made inroads into my backpiled emails.

But by far the hardest thing for me to deal with is the phone. Seriously. I freeze when I hear it and wonder if I am going to pick it up or not. I hate returning calls. I cringe at the thought of calling someone. It's like my phone weighs 30,000 pounds, knows all my darkest secrets, and is waiting to blackmail me. Did I mention that common sense has left the building at this point?

So I am pleased to announce that this holiday, facing time with both kids on my hands and cold, wet outdoors, *I picked up the phone* and called a parent of a classmate of James': "What are you doing? Want to go somewhere?" And yes, they did. And we did get together with our kids and had a good time.

I think I'll try stickers next, to make the phone seem even less intimidating. Maybe Zurg. We have some of those around, I just know it.

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.

Fear & Loathing and Potty Training

Let's see, what is you that you loathe the most? Or: how badly does Mommy need to get you to go? AKA: motivation with toys and food is for the other guys.

James hates getting his hair washed. Okay, "hate" is too passive a word. I can only say that the thing he hates even more that getting his hair washed is having to hear the hair dryer. Kick it up a few powers of ten and that's how much he hates to have his own hair blown dry.

Confessions of a very human parent: I have used this as a means of last resort when he has refused to pass BMs and potty training (and his well-being and my temper) is headed into ugly meltdown territory.

• Fact: James can hold onto this stuff for up to three days, and that's with added fiber (Miralax) and a suppository already added into the equation
• Fact: Starting Day 2 he gets cranky and by day 3 he can't settle down for anything, cries at meals, and is really, truly unhappy (and still refusing to poop)
• Fact: toys, books, and food will not motivate him to go

James' SHAPE assistant helped enormously by discovering that he'd still for a while on the toilet while playing a game on her iPhone. After about *20 minutes* he'd deliver the goods. Yay, so I ran right out and bought 2 $1 electronic, handheld video games at WalMart. Occasionally, he used his dad's iTouch. And all was serene for about month.

Then the motivation stopped working, and so did the potty training.

On day 3 of another standoff, at my wit's end, I told him (in as calm a voice as I could muster) to pass some BMs or he'd get a shower, with hair washing and hair dryer. He called my bluff and said "I want the bath tub". I turned on the taps and swung him off the toilet and over into the tub.
- "No!! I don't wanna!"
- "Okay, go poo-poo."

Back onto the toilet, and 3 seconds later, he had produced a magnificent specimen. Water went off and I gave him a hug and told him he'd done a great job.

This so goes against everything I've been told. Why do we keep going there?

I am happy to report that after a couple weeks of the shower/hair dryer ultimatum the BMs are getting easier for him to pass on a daily basis. He even does it on his own some days. Not every day, mind you.

Oh no. That would be too easy.

Sweetie, if you ever remember this period in time, please also remember that I love you very much and could not think of anything else.

Educational Cuts Protest (A Love Rant)

So today there were many protests in California over more proposed budget cuts to public education in California.

As a mom of a child on the autism spectrum who is in the public school system, I have seen services whacked for my son from both sides. Rules were changed as to how respite care funds can be used, and the pool of available funds keeps dwindling each year. If James needed in-home health care or I needed someone to help me lift and care for him, I'd be looking at the threat of a whole lotta nothing in the area of home health services. Our classrooms have lost their aids and class sizes are increasing.

Class sizes; yeah. Regular class sizes go up because teachers are let go. Special needs classes are going up because the official stats are now 1 in 90 children are being diagnosed with autism. That has been reinterpreted as a new diagnosis of autism every 20 minutes.

The teachers have seen budgets and programs slashed and colleagues' jobs axed. There are fewer people to help them do their jobs. There are fewer or no funds for school maintenance or capital improvements. Books are lacking. Parents pool what shrinking money they have and buy tissue and pencils for the classrooms. Scholastic book fairs are now a lifesaver that enable parents help provide books for learning modules in their child's classroom.

Here are some pictures from the pink slip row in the parking lot at my daughter's school this morning:







And the problem does not go away for higher education. UC students are being hit with a 32% tuition increase, which is insane in this economy. As a 1986 alumni of UCSC, I am outraged at the grossly exorbitant wages being paid to these men who look after themselves and their buddies more than for the UC educational system.

To me it's exactly the same as the banking & corporate industries rewarding themselves for bad management. We hear the same excuses of needing to pay what everyone else is paying in terms of compensation. Mister, you are looking in the wrong salary pond. Take a good look at the second-rate tier and the Loser categories, because that's the level at which you are actually performing. Take a good freakin' look at MY salary (or lack thereof) and let's compare what's "reasonable cost." I am telling you now I can't afford your luxuries. Not won't support -- I. Can't. Afford. Them.

Here's a thought: earn your keep. Do the job right and then let's discuss pay incentives. That goes triple for our state and federal elected representatives. Reward the heroes in the trenches for a change.

I've volunteered in all my childrens' classrooms and the dedication and hard work these people put into their jobs and my kids just blows me away. THEY are the people who deserve to be rewarded in the budget wars. Because then my kids win too. Our future is brighter. We support each other, instead the egos and bank accounts of a few.

SOOC Saturday: Signs of Spring

When we first moved into this house six years ago, my mother gave me a lot of daffodil bulbs to plant in our new garden. My daughter, who was learning to walk, helped me to plant them. Every Spring they come back as another miracle. Despite the nearby and invasive cacti, potatoes, and now lavender.

The vase is an engagement present. There are rosemary sprigs in there as well. Rosemary is for remembrance.

I need a little inspiration and remembrance of the good things right now. Our family is going through a prickly, hurtful, dry, hard time. We need our little miracles to keep us going to another day.

The Slurping Life is stormbound. Visit Melody and check out SOOC Saturday/Sunday entries past & present!



  

Taking CHARGE

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.


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.


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.



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.

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!

Back on Our Feet, And How!

Well, we've had 4-6 weeks of cold and flu cycling around. Almost sinister in that at first it seems a straightforward illness. Then it comes back. And if you don't watch it, the patient worsens. Went through this first with James' sister, then with James. She had the flu bug really badly, he got the cold and sinus infection in round 2.

If that was not enough, we had to deal with James' IEP and his triannual IEP. That will be a whole post in itself. Suffice to say it was a rude wake-up call and not very fun to hear. And there was so much good stuff in there too!

Lest we dwell in the alleys of downer stuff too long, another big milestone has been achieved: just yesterday, James had a bowel movement while using the toilet -- his first!!! And it was a healthy specimen. He tried again today, but sis not have anything to show for his efforts.

I was starting to worry about James' language skills regressing while he was sick and then down with a very sore throat. Not to worry, he and his sister were talking up a storm all afternoon long as they played together.

Here they are, playing at the local McDnald's. They said they were playing snakes.


Hmmmm. I am wondering if this is where he picked up his bug. James has a bad habit of wiping his nose with his palm & fingers, then licking the palm & rubbing some more. Yuck! I have been trying to break this habit by applying hand cleaner to his hands. I know that stuff tastes nasty.

A Child Is Waiting

I was up late last night and saw the beginning of the 1963 movie A Child Is Waiting.

I had to turn it off, it disturbed me so much. Because the opening sequence haunted me. If we'd had James 40 years ago, he would have been that boy and we would have been told that our best hope was to institutionalize him.

Our sunny, funny, smart James.

Seriously, I have tears in my eyes as I get shivers down my spine, just thinking about it.

If you want to read more, check out this blog post.