SOC Sunday: Spelling Lessons

Thank goodness for SOC Sundays, because just when I was about to get things done yesterday, I had a wee stomach bug that sidelined me for the day.  And once again, between school vacation full-time momming and LTYM (which I adore, but is a bigger job than I had bargained for) taking over my life, my poor blog is suffering. But with SOC Sunday I can take a snippet out of my brain and call it a post. Wheeeee!

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Jacob is getting really crafty. He's always got something going on... some phrase or word or sound that he repeats over and over.  When he was little it was word-for-word scripting from his favorite TV shows. But he's become much more creative now.

His language is growing by leaps and bounds, and I'm not complaining about that in the least.  OK, I;m lying, I DO complain about it sometimes when he talks all the time. We are a family of talkers, and often there is precious little peace in the house.

There is a lot that is frustrating for Jacob in life, and he needs to vent his frustration like we all do.  And these days, his favorite word to do that with? Is "Stupid" - which happens to be one of my least favorite words in the English language (of course).

The first time he used it, I was thrilled with his being "age-appropriate" (I even wrote a post about it!) but now I'm getting really tired of it.

Because, of course, once he realized it annoys me? Its value has risen sky high. So it's not just being used to express his feelings ("Stupid Batman!" when he can't get the guy to fit in the Batmobile in a way that lets the top close) but instead, it's become his beloved catchphrase.

He inserts it into EVERYTHING... asking to watch "Sponge Bob Stupid Pants," asking for his "stupid" dinner and singing "Twinkle Twinkle Stupid Star" along with me at night.

And then, when I have had enough and start threatening loss of privileges - like his beloved TV - if he says it again? He is changes over to... spelling it out: S - T - U - P - I - D.  And I have to laugh, as he is being so clever.

I still don't like it, but as he is being so S-M-A-R-T about it, I let it slide when he spells it.

The other thing Jake's taken up lately is mewoing like Gary the pet snail in Sponge Bob. This isn't a frustration release, he just enjoys the sound, in a delightful stimmy sort of way. And I know that stimming calms autists and makes them happy, so I'm not trying to completely squash him when he makes the sounds that bring him such joy.

But I really don't want them being bellowed 3 inches from my face, either.  So I am asking him at times to stop meowing. And you know what he's doing, then?

Yup.

M - E - O - W.

Smart-ass kid.

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New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

Looking Down the Road

Note: In Honor of Autism Awareness/Acceptance Month I am bringing some of my posts from the group Hopeful Parents site (where I post monthly on the 10th) back home to my blog. This post originally appeared there.

A few things in my life have been tapping me on the shoulder lately, asking me to please pay attention to the long view; looking down the road toward what my son Jacob may need in about a dozen years when he will ostensibly be an adult, or something like one.

We can’t know what life has in store for us, what twists and turns may lie ahead, with anything near certainty, but with each passing year that my son Jacob remains clearly on the autism spectrum, the prospect of him moving into "the mainstream" fades further and further from my radar.

And it hurts. It hurts my head and my heart to stand in the middle of the path Jake is currently on and calculate, clear-eyed, his trajectory, seeing it landing him square in the realm of needing some sort of minding or looking after... for the rest of his life.

Now, my son Jake is in a funny category. I don't love the labels, the ranking and quantifying. Because it leads to a certain reductivism, a tendency to see the traits, the diagnoses, and not the whole person - my wonderful son - who is so much more than the sum of his parts. But sometimes it helps when talking about these things to say: my son is considered "mid-high functioning."

"High-functioning" in the ways he has spoken language, reads, constantly attempts to communicate, actively engages with others and has a tremendous amount of social desire.

"Look, Mommy," he'll say, “I’m petting the kitty!” wanting to share his world with me.

But still, he is "mid-functioning" in how much of his language is still often scripted and repetitive, in how much of what he is hearing he is not comprehending; his language processing deficit rearing its ugly head time & time again.

And while he understands much about his immediate, concrete world, as soon as abstractions are introduced he is quickly lost. Language based as they all are.

Ask him a why question and you get a tautology:

"Why are you crying Jake?"

"Because I am sad."

"Why are you sad Jake?"

"Because I'm crying."

But the biggest concern of all is how little he understands of how the world works, and thus how undeveloped his ability to safely navigate in it.

Jake’s twin, at 9, doesn't always exhibit complete safety awareness when crossing a busy city street, but he's working on it. And he knows the elements involved, can rattle off what he should be doing -- waiting for the walk signal, looking both ways, watching out for turning cars, etc. etc.

Jake on the other hand, still seems to not know the difference between the sidewalk and the road, has no awareness as to there being a threshold crossed from one to the other. I must have pointed out the red stop hand and the white walking man of the crosswalk signs a hundred, a thousand, a hundred thousand times, and still he cannot for the life of him remember what they are supposed to communicate, why they should matter to him.

I could give a hundred other examples, but let's just say that while I expect Jake to grow and change, develop significantly, and blossom forth, unless there is a whole order of transformation about him - let's say future nanobots that can hook up the disconnected neural pathways or whatnot - we're looking at some sort of lifelong support system for him.

And this is where I quake in my boots.

Because the infrastructure to support that, for the MASS of kids who are going to need it, from the autism explosion that has manifested in Jake's generation?

Is simply. not. there.

I have a friend whose brother is autistic and in her charge, as her parents are both now gone. Her brother is living in a wonderful place, a small group home run by a dedicated staff. It is stable and intimate, and they function like a family. The residents venture out daily to jobs or day programs; there are outings: nature hikes, bicycle rides, movie nights, ice cream runs.

Wonderful.

But not wonderful.

Because my friend's brother had to wait 10 years on a waiting list to get in. And he's 42. Of the 5 in 10,000 generation.

There are a few handfuls of wonderful, appropriate settings for mid-functioning autistic adults; allowing them to live in supportive communities, nearly, but not fully independently. And, most importantly, where the residents have significant SAY in how things are run and their lives are ordered.

And now, it is our job as the parents of young autistic children to see that those grow a hundredfold, a thousand-fold, so they will be there for our kids who will likely need them.

And if you help to build a network of terrific group homes and your child ends up being one of the lucky ones, able to function fully independently in the world without support? You have done a wonderful thing for your community.

And if you don't act NOW? Your child may end up homeless on the street, in jail, or worse. Because while you think they can live with you forever... are you really going to live forever?

So yes, this started as a personal meditation on my son's future and ended with a call to arms.

Because in about ten year's time a whole generation of autistic adults is going to be aging out of their educational programs and therapeutic services. Many of them will be bright and personable enough to get jobs, but perhaps not be able to manage finances, or keep up with the many maintenance tasks of daily life without some degree of support.

And where will they go? Where will they go?

Feeling Very Hopeful, Indeed

It's the 10th of the month (shhh play along with me here) so I'm over at Hopeful Parents again today.

And while I thought, what with it being April and all, you know, Autism Awareness Month or Autism Acceptance Month (depending on which camp you fall into) and with my son Jacob on the spectrum, I would write another one of my “big thoughts” posts about A.U.T.I.S.M over there at Hopeful Parents.

Yeah. Not so much so. I have been too busy being his mother right now. Which is OK.

Spring Break and LTYM you know. Keeping me hopping.

So go on over to the New! Improved! Hopeful Parents site and read my post: My Turn

Cheerio! 

Missing my Father, Passover Edition

Batman & Joker at the Seder table, 2012

Food is the great memory-soup-pot stirrer. And so moments with my father often rise up to slap me in the face when I am in the midst of fixing food. (I would have said "cooking" but anyone who knows me would have done a spit-take, as I don't really cook these days, mostly assemble.)

Passover began on Friday at sunset, so our house was awash in matzo. Making Ethan his lunch, I asked if he would like some, or if he thought he’d be sick of it by the time these next 8 days were over, but he responded with an enthusiastic “Yes!” (Or as enthusiastic as a kid who is down for the count with a sore throat and bad cold can sound.)

And so I head to the kitchen to fix Ethan some (whole wheat) matzo the way he likes it… the way I liked it as a kid, schooled by my father because it was the way HE liked it: slathered with a thin, even sheen of butter and then salted.

He LOVED to eat matzo like that, and for years I did too. There is an art to it, making sure the butter is soft enough to spread, and spreading with a light enough touch so as not to pulverize the matzo as you spread. Then shaking on just enough salt. A delicate operation all around.

So standing in my kitchen, making my son his matzo I have invoked my father, tickled that such an un-religious man is so heavily associated with this very observant foodstuff.

He was a dedicated atheist/agnostic. He disliked organized religion. But we always did Passover and Hanukkah. I think because these were holidays in the home, about food and family.  And food and family were really important to him.

So every Passover of my childhood, we would head off to my Aunt & Uncle's (my mother's brother's family) where my wonderful cousins would be waiting for me.  We would go through the haggadah - a liberal, modern one, light on the "chosen people" & Hebrew and heavy on the social justice and unity of all peoples stuff - as quickly as possible. Then linger over the wonderful meal, finish up fast and roll home very late, very happy.

My husband's family is much more traditional and religious than mine, and in the years when my father was still alive and it was the year for us to Passover with Dan's side, my father would gamely sit through the long Seder, eat his matzo without butter, it being a Kosher meat meal.

As the years went on, his post-dinner sofa nap became longer and longer, eventually involving a pre-dinner one as well, encompassing most of the Seder itself. But still, it was good to have him with us.

He and my Mother-in-law passed in the same year, so my mother is the sole representative of their generation at Passover now. This year she appeared markedly more fragile than last, fading rapidly.

I feel her slipping away before my eyes, a pleasant smile always on her face, but less and less going on behind it with each passing day.  Caring for my father grounded her, kept her present, focused.  She is starting to forget people.  I do not know if she will still be with us next Passover.

This year my father is now two years gone; this our third Passover without him. But buttering and salting a square of matzo for my son, I feel him standing by my side, peering over my shoulder, reaching out for its crisp, crumbly goodness; reassuring me I've salted it perfectly, just right.
 

March Round-Up: What I Loved on OTHER People's Blogs

"Cloudy Afternoon" by Neil Kramer

Welcome to the March edition of "What I Loved on OTHER People's Blogs."

Yes, I know its April 5th, so I'm a little late... are you surprised? Really? You must be new around here. Anyway, to recap: it's a regular monthly round-up of what has caught my eye (and brain, and heart) on the internet.

And this month I'm going heavy on the newest feature, favorite instagram photos from other blogging photographer's instagram feeds. And this month these are, as I predicted last month, all by my friend Neil Kramer, the AMAZING intstagram photographer who also blogs at Citizen of the Month. And if you love his photos as I do, you can follow his feed though his twitter handle @Neilochka.

So without further ado, a double handful of wonderful posts and a mess o' instagram photos from March, 2012, presented for your edification and enjoyment...

Not even a little bit from Kris of Pretty All True

So, I'm Going To Be Okay  from (The Empress) Alexandra of Good Day Regular People 

"Cash Register" by Neil Kramer

Your Baby is My Baby from Jean / Stimey of Stimeyland

We're afraid to die from Amanda of Last Mom on Earth

"Pacific" by Neil Kramer

The best of school, the worst of school from Alice of Finslippy

 Little soldiers from Heather of The Extraordinary Ordinary

"Pier, Manhattan Beach" Neil Kramer

Not Quite Closure from Dragon Slayer Mama of tenaciouscee

A Uterus Is Not a Machine, My Daughter Is Not a Farm Animal, and I Am Not Happy from Adrienne of No Points For Style

"Bicycles" by Neil Kramer

Dick Cheney's First Heart from Deb of Deb on the Rocks

How Do You? from Stacy of Filling in the Blanks

"Surfer" by Neil Kramer

And, as always this is an idiosyncratic, and very incomplete list. There is always more wonderful out there, but these are the particular ones I have chosen this month. You're welcome.

Wordless Wednesday: One Face of Autism

I'm in the middle of writing and writing away, but in the meantime, a little visual interlude. Pictures of my son Jacob from this past year, in his many moods and phases: happy, sad, connected, spacey, silly, sweet.

Usually happy, but sometimes not; somewhat mercurial, consistently delightful, but always Jake.

 

I love you, Jake, my son with Autism.

My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012