The autisms are coming, the autisms are coming!

Okay, that’s a little graphic.

But as you may have noticed in my sidebar, I’ve signed up, along with a bunch of other folk, to blog about autism awareness in April. Which is autism awareness month. In case we MISSED it. Autism, that is. Hey honey where is that autism? I know we just had it here the other day…

One of the actions I’m taking to raise consciousness, as it were, is to host a blog carnival. For the uninitiated, this is like a mini-magazine where an assortment of blog posts from different authors are congregated in one place for easy access. The title of this carnival is Dessert May Come First–Or Not, described as “The Many Flavors of the Autism Spectrum.” Here is the description at Blog Carnival. (While you’re there, check out the many other topics available! I’ve had a number of my posts on mothering and autism published, so they’re open to many things.)

Why should anyone participate in a blog carnival? My friend over at CEOmum probably has the best explanation I’ve seen. (Course they teach us lawyers to talk real pretty.) I can verify that I’ve met a lot of interesting folk out here on my walk about the Net through carnivals and also received an increase of visits to my site.

The deadline for submissions is April 7, with the finished product appearing, hopefully on April 9. So look through your past posts or write a new one! If you find something you think would be particularly enlightening to others, enter it here. What am I looking for? Hmm. The recounting of an event that was particularly meaningful in terms of showing development. A funny incident that shows off your child/ issue. Some particular therapist that really truly helped, and why. Some piece of advice for parents/autistics who are on the path. Mostly the kind of words you think will make someone else read them and have that magic lightbulb go on over their head. I know you can do it, faithful readers, because I’ve seen them. If this goes well, I may make this an ongoing carnival with themed issues, i.e., therapies, educational issues, and so on. I used to publish a women’s magazine out of my office in the 1990s. It was always fun to read the submissions as they came in–people are more talented than they give themselves credit for! Looking forward to seeing what comes in.

For an example of a blog carnival, here‘s one I’m featured in this week, with an article I wrote some time ago.

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Meanwhile, our Spring is missing! It’s 32 degrees and it SNOWED yesterday. Would someone please put out an APB and if you locate it, drop me an email. Thanks so much.

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Finding common ground

In the end, I think it came down to who had better drugs.

When I got to school for the team meetings for Little Miss and Captain Oblivious, the school psychologist and I, fighting off migraines, compared notes and treatment regimens, shared hints and tips. We bonded. We were Sisters. It was good.

It was the first meeting I think we’ve had where I felt like everything we said was heard. I had printed blog entries from lastcrazyhorn and Asperger Square 8 in hand, having sent them by email earlier as well. (Only one person had actually read the things, because they can’t read blogs from school. How efficient.) But we passed around copies there. We had names, numbers, suggestions, questions. We had those three little letters after my name (Esq.) that strike fear into the school system, apparently, since the principal came to sit in. (Last meeting it was the district assistant superintendent. I must be getting less scary with age.)

We were all thrilled with Little Miss’s conversational advances, but agreed (!!) that now that she’s in third, and moving to fourth grade, she needs command of a much greater vocabulary and expressive base. We’re looking for resources in the community as a joint venture. Also I learned for the first time that handwriting is a separate process for autistic kids; so when we ask her to write her spelling words, she has to fight with the writing as well as the memorization and the meaning of the words. We’ve been letting her type them into the keyboard, which they approved, and they’re going to look into getting her a keyboard at school. After all, she has the affinity and computer geek genes… might as well put those to work!

Moving on to contestant #2, it was a more bipolar session. We heard for the first time that just after Christmas, a bunch of “friends” had trained C.O. to chase after thrown packs of food, to “go fetch”, which he did cheerfully, thinking he was participating in a hella fun game. Oy. That, along with several other incidents where it was clear he was either pushed to strike out or completely missed that he was being cruelly mocked, showed the teachers exactly what I had prophesied for him at the IEP meeting last year, and bore out what I had provided in the handouts. We strategized about lessons at home and school in how to tell what others are really thinking– on video– which he’ll eat up.

On the other hand, C.O. has bloomed in the sciences this year, scoring the highest grade in the the sixth grade class on science tests, and they all praised his unique way of approaching problems (at the same time disappointed he always has to do everything without much impulse control and in “his own way.” Yeah, welcome to my world.) The principal even hinted he would go to the mat to have C.O. moved to the accelerated track in science if I’d like him to. Wow.

The autistic support teacher from the middle school took copious notes. We talked briefly after the meeting and she gave some really good suggestions about how to protect him in the drafting of the IEP. I’m actually looking forward to that meeting, a month or so from now.

So I left in a rosy glow, sure the road ahead will be paved with yellow bricks and we’ll get our wishes granted. Or maybe that was the drugs.

See comments for suggested materials and methods, particular for Aspie tweens.

My bodyguard

Age does not protect you from love, but love to some extent protects you from age — Jeanne Moreau

Those who read the comments to yesterday’s post noted certain elbow-to-the-rib pokes by my offspring and friends, who have always delighted in pointing out the fact that when my husband and I married, I was 44 and he was 24.

The double standard still exists, my friends. A man picking up a trophy wife is considered studly, while a middle-aged single mom lawyer taking on a young man and his three children under the age of five is just…nuts? (Well, that’s a point we may have to argue. Later.)

That was the spring I was cast as Ouiser in Steel Magnolias, and when my fellow thespians got wind of the match, our director delightedly christened E “The Cabana Boy.” It went downhill from there.

Although E remembers with great pride, the moment when my daughter’s college friends heard the news and cheered, “Go, your mom!”

Age wasn’t something that mattered, when we met on the Internet through a science fiction RPG. We’d both grown up addicted to Star Trek–of course, mine was Captain Kirk, his was The Next Generation. We’d both been responsible for raising our siblings, with single dads too occupied to pay attention much. We both loved kids. We even had the same favorite flavors of pie and pudding. Our similiarities were uncanny, actually.

He acted older than his age most of the time, probably because he’d had to be a parent in his birth family. Coming off my association with all these children, I never have acted my age, so we met when we were each about the theoretical age of 34. Perfect.

We married on stage at the end of Steel Magnolias, when I had nine bridesmaids, just like Shelby in the show, and E’s best “man” was his lesbian friend Peg. The newspaper covered it for their June wedding tab. K wore the last dress I’ve ever seen her in. Maybe the last one she’ll ever wear. It was wild, wacky and suited us just fine.

Past the seven-year itch now, we have come a long way. I’ve taken down many personal walls that I kept for years, and have kids to devote myself to again. He’s gotten through school and teaches now, surrounded all day by computer geeks like himself, in isolinear chip heaven. Aware of each other’s shortcomings, we face them cheerfully (mostly) every day. He puts up with the growing impingement of my fibromyalgia during the winter months, and I’ve invested in stock for his ADD medications. We’re both challenged with all our children’s issues, but we work through them, one day at a time.

The ribbing continues about trading him in for the latest Cabana Boy, and I do point them out every so often, just to keep his ego in line. I’m not really looking. I mean, I’ve got this one trained just right! What do you think I am, nuts? (Oh yeah… you do.)

Who moved my empty nest?!

I was reading this article on empty nests, and it seems experts find this less an issue these days. I suspect that has something to do with the fact that women are no longer relegated to housewife status, and many of us have outside interests to pursue full-time once the children move out.

Ah, there’s the rub. Getting that empty nest.

I had two children with my first husband; they’re both on their own. When I re-married (Paul of Mango Corral fame), I gained four stepchildren, one of whom still lives in town, very much a mother-daughter relationship. Paul and I also had a child together, K, eight years younger than her siblings. So that’s four.

We always kept multiple children through the years. Paul’s kids came and went, depending on which ex they were mad at at the moment. We had Ayako, an exchange student from Japan; Patrik, a student from Sweden, and plenty of kids who’d sleep over at any opportunity if they could get fresh waffles in the morning.

The greatest adult/child ratio we ever had was in 1997, when as a single mom again, I lived with seven teenagers and K, who was 9. At the time, I had my two children, M and B, as well as Paul’s daughter S. M and S were seniors that year (the wild graduation party is the subject of a story coming out in December in the book A Cup of Comfort for Divorced Women); S was living with us while her dad had some hard times. Paul’s daughter D (the one who still lives in town) lived with her boyfriend’s family until a house fire left them homeless. She and her boyfriend moved in with me, too, with all the belongings they could salvage.

Shortly thereafter, D’s sister in Florida got tired of living with her mother and asked D if she could come stay with her here. She was a couple years younger, but I thought we could manage, so I agreed. She came up with her stuff, too. Oy.

Just when everything seemed to be on track, the girls came to me with the sad tale of Kris, a friend of D’s boyfriend, a boy they all knew, who’d been kicked out of his house by a stepfather and had nowhere to go. He came to dinner, seemed polite, quiet. He had a nice sense of humor. We didn’t have any bedrooms left but I offered him the couch. He accepted.

That menagerie lasted a month or so, during which time everyone ate regularly, got where they needed to be, and looked out for each other. I remember in particular a water gun fight in the house, me right in the middle of it, feeling very young once again. I’d always wanted a large family, and it was fun.

The emergencies subsided as the school year moved on. Kris moved out; D and her boyfriend found their own place. Her sister went home to Florida. The seniors graduated with much pomp and circumstance. B would leave for college a year later, so there was K, who went freely between her father’s house and mine as she wished. It was a quiet few years.

K is now in culinary school, so I’d be ready to fly off except…I got married again. (I know, people just DON’T get it) I adopted my husband’s three very young ones– Little Miss was just a few months old. The oldest, Captain Oblivious, is eight years younger than K– so we added a new generation to our life and times.

I doubt I’ll ever see an empty nest, even though we hope and expect the autistic kids will be able to live on their own someday. It’s just something kid-magnetic about me. I attract them, they attract me. People say it keeps me young; I know it keeps me gray. 🙂 But that’s why there’s Preference–because I’m worth it.

Sweet child o’ mine

I’ve probably attended a dozen court hearings at which parents’ rights to their children were terminated. Some of these parents have been my clients. From an objective third-party point of view, the children may be better off. The children probably don’t think so; these are their parents, after all, for good or bad. Many abused kids still cling to the parent they know.

What amazes me, is something I’ve seen more in recent years: people whose personal agenda causes them to leave their children with someone else. Not even family.  Just…someone. A neighbor, a friend–the most recent was their child’s 16 year old babysitter’s mother.

What is so important that you just leave your toddler with this person you’ve never even met face to face? Eh. You need to find yourself and start over in a different state. You promise as soon as you get things together, you’ll be back. But you never come. Three years later, the family finally decides maybe they should adopt the child so that he won’t be ripped out of the existence he’s come to know when you do come back. So they have a court hearing to end your rights to the child–and you can’t even be bothered to call in.*

Very sad. Not as sad as the parent who left her child with a neighbor, who then absconded with the child across multiple state lines. Several years later, they found her. and also found that the girl had been subjected to physical and sexual abuse, since she didn’t really belong to that family. Even now that the child has been rescued, she can’t go home. She’s too damaged. All because at some point the parent felt too overwhelmed to care for the child, and found a sympathetic ear.

But how can you give your child away like a worn out pair of jeans?

I’m not talking about the heart-breaking choices some mothers make, to place their child for adoption, knowing they cannot provide for the child and unselfishly allowing the child to be matched with a family who has been screened and who will raise the child as their own. This is a special sort of love, well-reasoned and hopefully rewarded. I’m talking about something that is a bad decision from the get-go.

Even on days I am most desperate for eight hours of respite from issue-laden kids, it would never occur to me to leave the children with someone I didn’t know down to the last shoe size. We don’t go out much, because we have two adults, and two adults only, who are our regular sitters. They each have families, too, and we can’t always arrange time. But would I leave the children with the neighbors to go away for the weekend? No way in hell. First off, the neighbors would come hunt me down after they had my children for a couple of hours. But second…you just don’t.

Call me a rebel, but this is one trend I intend to ignore.

*details changed to protect parties 

Making music matter

Two Christmases ago we got a nice Yamaha keyboard, on which you can record music you play, all different sorts of instrumental and percussion sounds, you know the kind. For the first year it moved about the house looking for a place to land, but since last summer, we created a space off the living room where we have two sets of bongo drums; a basket of maracas, little tambourines and other small instruments; two trumpets (from K’s band years) and now the organ.

It’s always been a source of quiet amusement and understanding that Captain Oblivious prefers the pre-programmed music; you pick the number and it plays the same song every time, exactly the same, black and white, predictable. Ditto Boy’s attention span never lent itself to the organ, well, except for the percussion key that sounds like someone’s vomiting. That’s a favorite. And we’ve found he can bang on a drum for…maybe hours? straight (which lent itself to the Excedrin collection in the bathroom cabinet next door). But Little Miss, once she could tolerate the sound at all, has steadily been experimenting.

At first, she’d only use the basic piano tones, but now she favors marimba and harpsichord. She’s been playing more lately, sometimes just stringing notes together, composing something in her head, apparently.

Several months ago, her dad started printing out basic nursery rhyme songs for her to learn, inscribing the letters on the keys, and she has a repertoire of four or five songs. Today, she listened to “Row, Row, Row Your Boat” twice; she experimented by ear once; she asked me how to play it and I picked it out. She watched once and had it. Cold.

So, thrilled she seems to have an affinity, I’m in a quandary. Do I start teaching her piano-lesson style, where she learns notes and “the correct” way to play? My husband and I both had piano lessons, so we could do this. But you know how autistic kids tend to fixate on a certain way things have to be done, and then they evermore must be done the same way? Is it a disservice to give her the program to digest, killing her willingness to experiment? Or do we let her continue to play with the thing, learning by ear or by casual contact, making her own little tunes?

I know music and music training is good for many reasons, including improvement of math performance, improvement of mental functioning after stroke and performance generally. I’d really like to hear from folk who’ve been through this. Formal training, or laissez-faire? What’s the right note?

(See a story that grew out of this post at: Firefox News)

Tourney for the Journey

My daughter is the Director of Residential Programs for Sierra Nevada Journeys, an environmental camp just off Lake Tahoe in Reno, Nevada. They’re running a fund- raising contest, and I wanted to share it with you, because I know many of our special kids are so deep into nature, we’d all like to go. It’s a fun way to contribute to a special cause and win prizes, even more so if you know squat about basketball! (which I don’t!)

Here’s Beth’s letter:

Sierra Nevada Journeys’ 2nd annual “Tourney for the Journey” is on! This is an exciting time for both NCAA Basketball and for helping to make a difference in the lives of youth. “Feeding two birds from one seed” as our kids like to say. We couldn’t be more excited about the progress SNJ has made in its short 15 month history. In 2007 we served 620 students with nearly 18,000 student-education hours. We gave out nearly $5,000 in scholarships in a range of residential and in-school programs and our growth has been supported by more than 50 volunteers providing over 5,000 hours of contributed effort. We’re now at a permanent staff of four and just two weeks ago we served our 1000th child. All of this has been made possible because of people like you who realize that they have the power to transform kid’s lives.

Like last year, this year’s “Tourney for the Journey” allows you to fill out an NCAA tournament bracket then watch how your selections do … all with the opportunity to win prizes! With the proceeds collected we’ll be able to offer scholarships to underserved students and keep our program fees affordable. One of the organization’s top priorities is ensuring that students from a wide variety of backgrounds have the opportunity to experience the outdoors, science enrichment, and leadership programming.

It’s easy to participate in the event, just follow the two steps below:

Step 1: Make Your Picks & Donate

Go to the Tourney Site www.sierranevadajourneys.org/tourneyforthejourney.html and click on the basketball icon to register for the Tourney, make your selections, and donate. Make all selections before 9am (Pacific Time) on Thursday March 20th.
Suggested donations:

$25 for one entry … $45 for two entries … $10 for each additional entry per house-hold (it costs approximately $75 for a student to attend our 5-week after-school science, leadership, and rock-climbing program). (Note: if you’d rather not participate in the tournament, no worries! You can still Donate via the above link through Paypal or with a credit/debit card)

Step 2: Follow Along With the Action!

Once the tournament starts, go back to the Tourney Site to check on how your teams are doing. Prizes include:
*Outdoor Adventure Pass good for one of more than 80 experiential adventures around the country!
* $100 REI Gift-Card
* National Parks Annual Pass
All participants will automatically be entered into a drawing for a chance to win a print from locally renown Reno artist Nanette Oleson, who paints idyllic scenes of the Sierra and western Nevada. The last-place entrant will receive a “Reno, Envy” t-shirt. (Get it? Reno…N.V.?? They’re so clever…)

Choose quickly and good luck everyone!!

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By the way, I’m the guest blogger today on the Special Needs Parent blog–come by and check it out!