Riding the Roller Coaster (and Ryan Break)

I am totally sorry about not blogging. I have a ton of stuff to splash across the blogosphere, and a ton more stuff that I can't, but is really super important. I have to take care the stuff I can't put out to the public first right now, but I'm getting there. So I'll put out some stuff that is perfectly public-worthy.

First, the bad news. We had another major personnel shift at school- very suddenly, with no warning. We knew right away at home. Hence, roller-coaster city. Joey's anxiety has skyrocketed, and so he is barely holding it together, all the time. The smallest of upsets can put him over the edge.

When he came home from school yesterday, everything was in an uproar. Being early dismissal day, the schedule was, naturally, all screwed up. I had two edgy boys bouncing and screaming, so we gave up and went to the park to bounce and scream. It was working beautifully. The boys are especially fond of the section of the park with the new equipment. I will say up front this section of the park does have a sign stating that it is designed for the 5-and-under crowd. However, it is very typical to find kids of all ages on all the equipment, and my kids are very aware that they have to be extra gentle and extra careful in this section of the park when there are little kids about. Besides, they love to be in this section because the love to play with the little ones. The equipment is perfect for Joey's not-so-obvious mobility challenges, and the smaller kids are easier for him to play with. He also likes being the "big kid" to the little ones, and he likes how they are gentler (because they are younger). Andy also likes the little ones, and being the "big kid" leader in games. Both adore babies. They spend a good amount of time playing all over the park, including the "preschool zone." Hey, my kids still love Shaun the Sheep.

There were lots of younger ones out and about yesterday, and my boys were loving life. I was watching Joey closely as he was helping swing a baby and talking to a mom, when suddenly Andy comes running past me, with his crying face on. His smaller friend came after him. It took a few minutes for Andy to recover enough to come back from behind a large tree and talk to me.

"What happened, baby?" I asked, giving him a quick hug as he broke into tears again.
"That man said I can't play here!" he wailed, pointing. Sure enough, there was a dad, with a small boy, and a person I later realized was his wife, with a little girl. I encouraged Andy to go play with his friend, and the pair assiduously avoided the usually-favorite area in favor of running among the trees. All seemed fine, just a misunderstanding, no big deal. After all, there were several other children on the equipment in the 6-8 range, and nobody was being rough or unruly.

But as I watched, Joey finished his conversation and headed for the equipment. Sure enough, the man stopped him and started speaking with him, and Joey bounced on his heels a little, a sign he was unhappy. I got up and headed for intervention. As I closed in, I heard the man say, "This area if for the babies! You're too big to be here! Go on!" Joey repeated back, "It's for babies!" in a tone I knew was bad news.

"Go on and play, Joey," I addressed Joey firmly as he turned to me, and emphasized my words with sign, Play.
"The babies don't like me," Joey frowned at me.
"It's OK, go play," I repeated, and repeated my sign.
"This area is for the under-fives! He can't play here!" the man shouted at me.
"Excuse me, sir," I replied firmly, "but this is a public park, and my children need this kind of equipment. Joey," I repeated my sign to Joey, "go ahead, sweetheart." Joey climbed up on the equipment, and the man threw his hands up, clear exasperated.
"What, is he retarded or something?"

No, I didn't deck him. Sorry.

"Sir, this is a public park, and using that word is very offensive." He huffed off instead of answering me, saying something to his wife that made her frown and pick up the little girl. I did not pursue the point. In this state, he could easily have a concealed weapon, and I had made my point clear. I watched from my usual seat as he gestured and I could hear he was still saying things. Whatever they were, the other families were now all glaring at him. Joey called something to him, trying to include the man in his game- something Joey often does when adults are about. The man ignored him. At some point in the proceedings, another father turned to the man and something. From the sudden desist of ranting, I assume it was something to the effect of "shut up."

I should note here that neither Joey nor Andy did anything to hurt their children, block the slides, push them, or anything else that might have been dangerous, intentional or otherwise. When the little ones wanted to get down the slide, Joey moved aside and let them go, cheering when they made it to the bottom, offering encouragement when they were at the top. Joey waved at the man's little boy, that's the only contact even attempted with these particular children.

The couple finally decided to scoop up their kids and go away. Neither glanced in my direction as they went out, which was just as well.

That is when the families started coming over to me.
"What jerk." "Are you OK?" "We sure love your boy, he's so sweet." "Is your other little guy OK? He looked upset." "What was that guy's problem?" Several were upset that he had referred to Joey as "retarded" in his stream of criticism of my parenting choices.

Sometimes when we run into people like that, I sometimes wonder if it's me. I won't say he didn't have a point. I will say there were more constructive ways of communicating it.

So we need a good Ryan break.

Expectations

Joey is ten years old now. I keep thinking back to when I turned ten. I liked to walk through the woods. I liked to make stuff. I could get on my bike and ride down the road to pick blackberries. I could make Christmas cookies. I still liked my Barbie dolls and my dollhouse. I liked to make cassettes of my favorite music- with my fancy record-player, I could take the music right off the records. That was a big deal, very fancy (I could also record tape-to-tape... woo-hoo!)

I also have been looking at what other 10-year-olds I know or knew like/d and do/did. For the Cousins' tenth birthday, we gave them a keyboard and a telescope. The took my boys on a tour of my Uncle Lou's property, and took them to see the chickens next door- something they normally could do by themselves, without adult me tagging along. Awesome Neighbor would go around the neighborhood, visiting friends and just generally being a kid. When you talk about ten-year-olds, things like go-karts and playing spy and running down to the swimming-hole come to mind.

Joey can't or doesn't do these things. I can't imagine him in a workshop, watching and helping with building... well, anything. He likes cooking, but needs a lot of supervision. He likes toys, but doesn't actually play with them very often. He would have little clue what to do with a telescope, and hasn't shown much interest in the keyboard here. Having him go anywhere independently? That is asking for big-time trouble, with bolting and "eloping." He's interested in making his own music lists... kind of.

In some ways, Joey is 15. He can do math like a whiz kid, for example. And in some ways, he is 5. He still likes his kisses. But there seem to be very few ways he is 10, in any way I can see most ten-year-olds meeting expectations of ability and maturity. It's not just me, either. His OT hasn't moved him up in the social skills groups- he's still in with the 6-8 year crowd (and these are disabled kids, so they are lagging even for 6-8 year kids), not the 9-12 group.

Sometimes, when these kinds of thoughts crowd in, it is good to breathe in and remember what he does, and loves, and enjoys, and just enjoy him being Joey. After all, Joey is awesome. He loves to laugh and make other people laugh. He loves baseball (he's a big hitter, too!). He has completely defeated all the levels of Super Mario Brothers on the DS, and is well on his way for the Wii. He likes chattering as if he is making video "walk throughs" while he plays, now- a professor, just like his Mom, explaining what to do and how to do it and why he is taking a certain path or power-up. He loves to ask math questions, and correct you when you get them wrong. He loves loves loves playing with his brother- even if it gets frustrating and little brothers get annoying. He loves to give us hugs and kisses. He loves wearing basketball shirts. He loves the beach and swimming in the pools, and playing with the hose. He loves his scooter and his computer and his notebooks.

I told you he is awesome. And really, did we expect any less?

A Month Comes to an End

Looking back through my April blogs, you might notice something distinctly different this year: not a whole lot of autism awareness pots this month. In fact, it appears blogging has taken a serious back seat in life here. Blogging requires things like time and energy. This spring is being a bit of a roller-coaster, leaving me short on both. I am looking forward desperately to next week, when I will have all my classes graded and closed out, no soccer practice, and just a few more minutes on Tuesday or Thursday (probably not both) to do stuff like... clean. Or read. Or maybe even blog.

Andy's vision therapy is going fine; and while she's at it, the therapist is also working on his manners and some of his ADHD issues, fine motor issues, and bilateral coordination. Unfortunately, he also decided to hit a growth spurt, so Total Dysregulation is upon us- he is very brittle. He runs out of energy reserve super-fast, so we have to keep on top of feeding him. Add the constant motion, and we are in meltdown city.

On the other hand, Joey has been caught sneaking snacks again, so I have returned to the apples and sugar-free popsicles plan- ie, those are the snacks in the house. Everything else is Verboten. I have been trying to encourage scooters and other outdoors play, but glitches in the day means there is a lot of Mario Brothers being played to calm... and revv. It's a delicate balance.

Yep, I have one that needs to sit down and eat, and the other needs to get up and not eat. Great.

At any rate, Autism Awareness Month is now at its close. Most of the folks I know will also turn to their next interesting Awareness project, and leave autism aside for another year- if, indeed, they bothered to pick it up in the first place. I keep turning around to find such a lack of understanding, it stings to have it so close; turn again, and there is a sense of wanting to know; and another corner, and I find some folks who get it, and others who never will. You just never know who will be around those corners. I am sometimes surprised. And shocked. And surprised.

As the calendar turns, please don't forget us. Don't forget Joey. It is important for everyone to not just be aware for a day, or a month, but to really think about their lives and how they are living them. Awareness isn't just about putting a blue light bulb outside or a ribbon on your car. It is about understanding what it really means to treat others as you would want to be treated- all the time, every day, every moment. If we all just learned to do that, all the world would be a better place to grow and be free.

It's Music Time With Ryan

How about kitties?

For jillsmo.

Gotta love those kitties. They have such a nice, cushy life, lounging about the house, being kitties. Mew.

All Dressed Up: Let's Go, Ryan!

Spring Surprise!

Ok, you guys need a break from my depression, and this morning, so did I. But I especially needed to run outside and cover my electric lawn mower with a tarp, because, hello! It is spring! It rains! And it started to. (Good news- I did manage to cut my grass a few days ago. I just failed to put the lawn mower back into the shed, because a bunch of crap I had shoved in the shed to protect from the snow that never arrived fell over as I pulled the mower out. And you know what a pain that is.)

So I dashed outside to save my mower, since I have already killed one, and being the distractible give-a-mouse-a-cookie type, I noticed the sandbox I bought last year has completely deteriorated (what do you mean, composite is supposed to last forty years? It didn't make it six months!), and the new one (ok, its a wood vegetable bed, sue me) is still in the car. The plot where it belongs is scattered with the remnants of plastic box, plastic sand toys that got left out, sand, and lots of weeds. So I decided those weeds should go before I put efforts into cleaning the plastic shards up and putting up the new box, even though it was raining. Lightly.

So I reach down, grab a good handful of weeds, and pull.

There is this moment in life when your brain registers in your mind that something is amiss, just before you really understand what is amiss, that sets you at the edge of a chasm of fear and oblivion, because you are at the brink of Unknown Terror. It is that moment that can grab your lungs, squeeze, and creates this really amazing sound, for which we have no truly appropriate word.

Something was amiss.

And it was alive. In my hand.

Grass, weeds, and small northern brown snake took to flight from my palm as I screamed like a little girl.*




Now, you can place that next to your picture of me doing battle with turkeys.


*He was not harmed. I am not afraid of snakes, except for copperheads, so once my brain registered is was, in fact, a snake, I was fine. I made sure he slithered away smoothly and happily into the weeds around the base of my lilacs before not pulling any more weeds and heading back into the house to Do Something Else.

Three Minutes.

We were at the park. We've been spending a lot of time at the park lately, because going farther involves a lot of prep and anxiety, and I just haven't been able to do it alone anymore. The park is familiar, the boundaries well-set, and I can actually do a little writing or grading or whatever. You know, he wanders about doing the Joey thing, and I sit in a set place where he knows I will be, and do the Mom thing. And Andy runs about doing the Andy thing. And I do a regular headcheck. Child one, child two. Child one, child two.

Today, I looked up doing my headcount, and three boys who looked alike (must be brothers or cousins) were headed straight for me. This is never a good sign; and sure enough, they complained that Joey was cussing at them. Joey's explanation was that they were "being mean" and "ignoring me." So we had a little talk about how some people are not interested in being friends, and we should just leave them alone. Then we talked about not using bad words, and that we had been having this discussion all week, so it was time for him to be suspended from the Wii for the evening. Then he bounced off with instructions to tell his brother we were leaving in ten minutes.

And I finished up reading the paper I was grading, about three minutes, and looked up for a head check. Child one....

No child two.

I gathered my things and headed over to Andy, asked him if he could see Joey. After a brief look about, the answer was no. He ran up the hill. No Joey. The park realized I was looking for Joey, and I started getting reports. He had gone up the hill. He had been seen on one road. He had been seen on the other road. He certainly was not here.

Andy ran ahead to check the car, the other adults spread out in a search; and I called JoeyAndyDad to get him on the move. We agreed for me to jump in the van with Andy and start along the familiar path home.

In another minute, I had the call from JoeyAndyDad- Joey was found... he had made it about 4 blocks, 2/3 the way home. He must have run part of the way, and started out as soon as I released him to find his brother.

My world just contracted a little more.

A Chink In the Armor

The world is coming to an end. Or more realistically, there is a tiny crack in one of the screens of the Nintendo DS.

Joey found it this evening when Andy wanted to watch Sonic the Hedgehog instead of playing Wii. After a hard day of baseball and park, Joey wanted to relax with his World 8 Castle on the DS. Some days, you just gotta have some Luigi.

What he found was a crack. We already had been plagued by the infamous hinge crack, but he accepted a clear case as a quick fix. But a screen crack isn't so simple. He was devastated. He curled up next to me, playing his game, in tears because he was so upset about the screen being cracked, and perseverating on it.

"It's a crack. It's broken! My DS is broken!"

Sore at heart that I could not fix this, nor can we afford a new one right now, I sent the child up to his father. JoeyAndyDad did his best, cleaning the screen and the game, making sure everything still worked.

Joey came down again, still sniffing, but with better words, such as, "It' just a tiny crack!"

Then he curled up next to me, and said, "Daddy did his best. I appreciate him trying."

That's my boy.

Adventures and Realities

The sky is high and blue; only the small, puffy clouds that announce a glorious spring day punctuate the perfection. It's cool and breezy, and we have no place we have to be-- no school, no sports, no therapy. I so wanted to go to the zoo today.

When the boys were small, this was the kind of day that would find us on an adventure. We'd pack ourselves some snacks and drinks and spare clothes, the rest of the travel kit, hop in the car, and go explore the world. Zoo, beach, museum, mountains, Jamestowne, park, aquarium, Dinosaurland, somewhere new and interesting and fun. We'd look for shark teeth or find sheep at Wakefield or ride out to feed the goats or chase chickens.

No, these outings were not the same as one might have without an autistic child in tow. Joey might not see as much or understand as much or even care as much; but we were out and about and doing.

It is a life we have left aside the road. With bolting, I can't go with two boys anywhere by myself anymore. We must have a ready set of hands and legs to run in case of a sudden anxiety attack. Going anywhere outside a 20 minute drive now involves huge preparation for both boys, with very limited possibilities for success even so. Anything interrupting comfortable, predictable sameness risks major consequences. It is no longer safe for my boys to have only one adult with them.

Even when they were little, not every outing was a picture of perfection. We have pulled Joey about a zoo in a wagon when he refused to walk. I have sat on benches with Joey and had Andy wait for calming or hunger to be appeased. There was the infamous bolt at the Renaissance Faire, when Joey was being chased by fully costumed knights. Thank goodness some kind soul managed to watch Andy while we got Joey out of the woods.

But there was also the trip when the budgies landed on our sticks and we got to let them, and feed a giraffe. There was that beautiful first time Andy saw dinosaurs, and his face was alight with dreams. There was the trip when we watched rays glide through the water like birds. There were happy lunches in Williamsburg, smiling faces on 15th century boats, and happy watching of orangutans and playing on giant pizzas. They may not have all been rousing successes, but at least we learned to try.

Now, I think hard before I even take them to the park. Joey wanders about with a shovel or spoon, writing in the air and occasionally shouting things at random, or roaring like Bowser until the other kids steer clear of him. Taking him to a different park can be overwhelming, as he displayed all too clearly just yesterday. Is it worth all the anxiety and stress? There was a time when I answered yes. That was before anxiety meant Joey might run into the street.

Still, I so wanted to go to the zoo today.

Ryan Gosling Friday: Go Ryan!

Ten Years Ago

Ten years ago, I was a brand-new mom of a beautiful, squishy, soft baby boy. When I first touched his cheek, it was so soft, it was like touching nothing at all. My Joey came into the world via emergency c-section, precisely at 8pm. And who could not love that beautiful, smoochy Buddha Buddy?

It's hard to imagine loving someone more than the moment my Joey came into the world. Until the next moment came, and we all loved him even more. Then the next moment came, and we loved him even more...

If you have never had a newborn in your arms and sniffed that newborn baby head, you cannot possibly imagine the true meaning of the universe; until you smooch that baby head, you cannot imagine the totality of existence. There is nothing more life-changing than the real understanding that life is more than just you. That the cosmos is bigger than just you. Not just know it. Understand it.

I had no idea how much I would learn from my Joey. If I had known, I would have had him years sooner. And he would have a lot more siblings.

When Joey was born, my mom said I would be amazed how fast the time would go. She's right. I'm staggered. Time slips through our lives with no turning back, and the best you can do is hug your dear ones tight and enjoy the ride. Fortunately, Joey still loves to be hugged. And smooched. And squished really, really good.

Happy Birthday, Buddha Buddy. You are my Joey-Boy, forever and ever.

The Big 1-0 tomorrow!

Am I ready for Joey's birthday?



Why, yes. Yes I am.

Being Aware: What Does Autism Look Like?

With autism awareness month upon us, one of the questions I often get from those not familiar yet with autism is, what does autism look like? There are several different reasons for asking. Some folks want a list of thing to "look for" in their own family and friends, for a sort of self-diagnosisof things they see. This is a difficult reason to answer, because autism does not manifest in one single way; every autistic person is unique, just like the rest of us.

Also, when I start making that list, I am often interrupted by comments such as "well, I do that, and I'm normal! (or not autistic!)" because so many of the red flags are not a matter of doing or not doing, but a matter of degree. I wind up in the discussion of the difference between a tantrum and a meltdown. It is hard to explain to someone who has never seen one or the other. Where does one draw the line between "very focused" and "hype-focused"? Sometimes it is not so obvious. And some people are just not very bright, and trying to tease the knife edge between them is useless. Sometime you just have to say, "yes, I know you really like cats, but it doesn't get in the way of you doing other things, like eating." Which isn't the boundary at all, but at least they get the idea.

Then there are people who ask this question because they want to look at random strangers and diagnose them. After all, with many disabilities, you can see the person is disabled. They have visible differences- wheelchairs, for instance. Or distinctive facial features. Also, I get a lot of comments about how Joey doesn't look disabled- especially when I pull into the handicapped parking spot and get out our hangtag.

Autism is an invisible disability. You can't look at someone and say, "oh, s/he must be autistic!" You need other cues. That is something to keep in mind as you walk around in the wide world- just because that person doesn't look disabled, doesn't mean they might not have special needs. Be prepared to meet them so they can join in the working of the world. After all, you want your special needs met, right? In fact, people who don't meet them often get labeled very quickly in your mind as a person to steer clear from, right?

Anyone you meet might or might not be autistic. Autism occurs in people with or without other disabilities. Because autism is a pervasive neurological disorder, other disabilities can be bundled into the issues. Or not. Consequently, autism looks different for everyone- as uniquely as you and I look from each other. Autism is a diagnostic label related to certain behaviors and deficits; it may not even be a single condition or state, but a variety of pervasive issues that have similar results. Social connection/social skill difficulties, communication disorders, issues of movement. Neurology is pervasive in our bodies, so anything inside or out might be affected- sensory systems, digestive systems, respiratory systems, endocrine systems... I could go on.

So there is no one way autism "looks". I can only tell you what it looks like for us. And for us, JOey is the ultimate face of autism; autism is intrinsic to who Joey is and how he experiences the world. Watching him, listening to him, accepting him helps us to have new eyes and see from new angles, to understand the world from a point of view we could never have imagined without him.

What does autism look like? It looks like birthday parties and video games and days at the beach. It looks like grins and giggles and sparkly blue eyes. It looks like round rosy cheeks and running around the bases. It looks like homework and balloons and tricycles. It looks like a boy, growing up fast.

To us, autism is a roller-coaster, much like raising any other child, with the difference of the extremes. You notice the difference when you see Joey next to his peers; the things they do oh-so-easily (such as, say, talking and walking), are not as easy and free with Joey. But when you just have him, can you see it?

Well, can you?

Friday: Hi, Ryan!

It was a very long day

And you know it is going to be, when the OT comes out and cheerfully informs the parents that today's session was about "dealing with disappointment!" And then, just as cheerfully, tells you that they had an egg hunt, but when the kids opened the eggs, they were full of stuff like paper clips and crumpled paper, and the kids then had to practice saying something nice about the object.

Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.

See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.

We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.

Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.

Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?

Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}

I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?

It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.

Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.

I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.

And none of those challenges justifies murdering a child. Period.

Happy World Autism Day!

Today, we are celebrating my Joey and all our autistic friends, and their wonderful ways of seeing the world and sharing it with us!

I think World Autism Day is a great idea. When I started this blog oh-so-long-ago, it was mostly because I didn't want other parents to feel as lost, confused, and afraid as we did when we discovered that all those quirks Joey had meant he was having trouble navigating the world. We had just learned one of many important lessons in our lives: that autism and disability aren't scary. Joey is who he is, and we love him no matter what labels are used to describe him. In other words, there might be reason to get prepared, to be concerned, to think and research and collaborate... but there was nothing to fear.

Far too many parents are left to make decisions in the face of the fear of the unknown. They are handed a diagnosis, smacked with the idea that their child has more challenges before him or her than those parents might have expected, and no information for how to deal with the news, or to help their child.

We are also on the brink of another challenge: discussing with Joey what autism is, and what it means. Although we don't hide Joey's autism- not even from him- that doesn't necessarily means he understands it. At the end of our IEP meeting today (how's THAT for celebrating World Autism Day?) we were already started to discuss strategies for middle school. We have a year to prepare. Getting Joey to understand himself so he can be better prepared to self-advocate and help us help him is part of that important transition process to the world of middle school (a world that presents special challenges to everyone, autistic or otherwise).

One of the ways we prepare is to read about our friends who have older children, who are themselves going through these transitions and changes, and sharing parenting experiences with other parents. We coming into a moment where it may be useful for Joey to form his own understanding of himself and the part autism plays in who he is, possibly through connecting with other autistic people. We don't know how much of his self-identity will include autism, if any; but sharing experiences with others who have an inkling of how you think makes a huge difference- a lesson I remember from my own middle school and high school years.

So we are glad today to join in the celebration of our friends, our family, all those who understand or want to understand Joey and how he experiences the world. Without autism, Joey would not be Joey. We love Joey.

Ryan: Week 8

Another week of our good friend Ryan, joining our world for a little taste.

On/Off Switch: Anxiety's Funny Ways

We have been having some hard days. There are lots of changes going on in Joey's life, and change is not our friend. So honestly, when we had a dentist appointment on Monday that required me to pick him up from school, I wasn't surprised to hear he had a bad day. He had been anxious about the appointment when I put him on the bus. Specials (art) had been shaky. He bolted at lunch when there was some confusion about his lunch money account and was initially denied milk. Not just a run-to-safety bolt, a blind-panic bolt, made worse by folks who don't yet understand you have to block him and distract him with a person he trusts while you block the door, rather than chasing him (and scaring him more). He was clearly anxious as I got him to the car and went to get Andy; repeating comfort phrases and air-writing.

To make things even worse, we are not in our proper car; my van is being worked on, so we are in the small car. The good thing about the small car is that the back doors have child locks. The bad thing is that the windows do not.

On our way to the dentist, Joey insisted on putting his hands out the window. This may seem harmless, but it is very dangerous, and we were coming to a point in the ride where he could have gotten hurt- so I asked him to roll up his window.

Silly me.

The world instantly stopped turning, swirled through space, and crashed on Route 1. Screaming ensued. I tried to reach back and roll the window up myself, to have my hand slammed against the crank by his knee. Ouch. I had to pull over to try, as the light turned green, and was greeted with more screaming and now he was hitting my arm while slamming my hand with his knee. I got the window up. He instantly rolled it back down. We had three rounds of this. Explaining the danger? Useless. Offering token reward? Useless. Raising my voice? Oh, totally wrong. Total meltdown. But the window was now up, and he was still in his seatbelt, so I got the car back in drive and made it on time for our dentist appointment.

Joey stomped in before me, and announced to all and sundry that his mother did not respect him anymore, and he hated her. Also, that his mother should stop hitting him, because it was mean. I sat down with Andy and managed not to cry.

Then, out popped Joey's favorite hygienist. It is a huge credit to the staff at our dentist office that everyone was being just as sweet as could be, and taking the whole situation very lightly. They are kind of used to Joey. But there was positive giggling when this lady popped out with a cheerful, "Joey Guyton! It's your turn!" and it was like a switch had been flipped.

Joey grinned. He stopped yelling and stomping. He said, "Hello! How are you? I am fine! I am happy to see you!" and went on back to get his teeth cleaned as if it were a much-anticipated treat, calm and smiley as you please. He emerged half an hour later with a big smile and very clean teeth, as if nothing had ever been amiss.

Some days, there is nothing to fear but fear itself.

Ryan Hunts My Bolter

Yeah. It's been one of those days. And I think I'm out of wine.

Need some laughter? Go see what else Ryan Gosling is up to in the special needs world by checking out Sunday's Ryan Gosling Week 7.

A Peanut Butter Sandwich

A miracle has occurred at my house. Not a big, holy hannah there is a saint living here kind a miracle. No... one of those small, beautiful little miracles that really reminds you that every minute is a miracle, and you should celebrate each one by hugs and smooches. You know, the kind that really matter.

I was grading exams, when Joey comes into the den with a big grin on his face and what appears to be a sandwich in his hand. With the pride of a boy who has just conquered the known universe, he announces, "Mommy! I made a peanut butter sandwich!" His first peanut butter sandwich, all by himself, start to finish. Then he took a big, beautiful bite. Then he let me take a picture.

In case you don't see the miracle in this, let me outline what it means to make a sandwich:

1. Sequencing. Take out the bread, get out the peanut butter, spread the peanut butter, put the sandwich together, put away the peanut butter and close up the bread. I could get into finer steps of the sequencing required, but you get the point. Sequencing is something we always have trouble with here. Yes, he can turn the key and get out the door no problem, but doing something like making a sandwich? Way too many steps... until now.

2. Hand control. Ever watch a little kid try to spread peanut butter? The bread is usually unrecognizable by the end, or you have this very large lump of peanut butter, or both. It takes a huge amount of control to spread anything with a knife, especially something as stiff as peanut butter from the fridge. Controlling the pressure exerted as you move the peanut butter across the bread is something you may not even think about, but was impossible for Joey... until now.

3. Bilateral coordination and crossing midline. Ever try to do that spreading with one hand? To make a peanut butter sandwich, you usually have to hold the bread with one hand and spread with the other. This requires coordination, and an ability to cross your midline while you hold that bread in place. Joey has limitations in his ability to cross midline, which results in poor bilateral coordination. Holding something in one hand and manipulating it with the other with any real accuracy is something he struggled with.. until now.

Now, he can make himself a peanut butter sandwich. That boy rocks.

Spring

Spring arrives with soft petal kisses
and steals our heart away

Positive Reinforcement

See more of Mr. Gosling supporting his special needs friends at Extreme Parenthood!

What Andy Sees

So we had our meeting with the vision folks. My best summation of our discoveries is, holy crap, no wonder he hates school. They keep telling him to do stuff he can't see!

To give you an approximation, from the experience I was presented at our meeting, I have created the image below. Now, this is a still image. Andy's eyes move, just as your probably do, as he tries to focus and re-focus. So on top of this shattered and doubling effect, image the image is constantly moving, slightly at the outside, downright swirmy-wormy in the center, and you'll get just a glimpse at how Andy sees his schoolwork, or that page you are trying to force him to read.



Got a headache? He gets them, a lot. And now we are very, very sure why. Vision therapy, here we come.

When Ignorance is Deadly

I know, you wanted a nice, happy post today. You ain't gettin' one. Sorry.

I've been following the information about George Hodgins, a 22-year-old man who was murdered by his mother last week. George Hodgins was autistic.

I have been struck by the comments that follow many of the news items. Not just the outpouring of sympathy for Elizabeth Hodgins, but the complete lack of sympathy for George Hodgins. The blaming of "lack of service" and the call for family support may seem a natural reaction to many people- indeed, it must, as many of the comments steer in that direction; but is it really the appropriate reaction? What about talking about support for autistic people? For people in general? What about the support for the victim in this case? And folks, the victim is not George Hodgins' mother. The victim here was primarily GEORGE HODGINS.

When I see comments like, "well, all parents of kids with autism think about killing them," the magma rises before my eyes. I mean, seriously? Holy crap. I have never thought of killing Joey. Never. When such comments are followed up with "Any parent telling you differently is lying," I do think of violence. Not against my son.

But you know who I worry about first? No my Joey, who even now is gaining skills in self-advocacy, who is able to speak up in his own way. By the time he leaves school, I have solid grounds to hope he will be able to self-advocate effectively and live independently.

I think of Max and Charlie and Jack, the boys of my best friend who cannot speak for themselves. I am convinced that there is more going on in those heads than anyone gives those boys credit for, and primarily because they cannot speak. They are boys who are severely disabled. They may never work jobs, they may never talk; but does that mean they have no value? Sadly, to many people, they believe these boys have no value. Of course, they have also never met Max, Charlie, or Jack, or anyone like them- or if they have, they dismissed those people out-of-hand, instead of taking the time and effort to know them and let them work the magic of changing their lives and creating the understanding that is their value, the way they give back to our society- with infectious smiles, personality, and a real understanding of what it means to be human.

Max, Charlie, and Jack are people. Just like you. Just like me. We may be vastly different in many, many, ways, but in this we are in common: we are all human. We are all people. These lives have intrinsic value in the miracle of existing. Until you meet them, with an understanding that they are people- reall, full-fledged, absolutely whole people- you cannot fully appreciate their value, because our society is so convinced that they have none. They spread that idea to the very base of our youth and experience. Shake it off.

I will not speak for my friend directly, but I strongly suspect she has never thought of murdering them, no matter how "high maintenance", "low functioning", or "easily irritated" her boys might be.

George Hodgins died because his mother valued his life so little, saw it only through the desperation of not giving him full value of being a person. He had been out of his program for around three months, and the program had adult service available. This is not a story of lack of services. This is a story of a young man whose life was cut short, and stolen from him. No excuse, no justification, nothing that we can design or imagine to justify her action in killing her son can change this fact, that she chose to murder another human being, a life of value, and rob us all of that life, and rob George Hodgins of his life. He was a loved, cherished young man, with friends and family who loved him and valued him, he was a young man who loved and cherished and thought and breathed and lived, and now he is gone.

Autism is not happening to me. Yes, my life is not what I planned, and I gave up certain paths and dreams to help Joey and to help Andy in ways that people with typical children simply cannot fathom. I have a different life, different plans, different dreams. Seriously, what life goes as planned? And though I think about the lack of services and supports, the problem is not that there is lack of services and supports for me, there is a lack of these things for Joey. I want his life to be as happy and fulfilling and joyful as it can be, with the opportunities to enjoy living that other people have. I'm a parent, after all. I might have to fight harder for it, and get less sleep along the way, and maybe my working life isn't typical, but that's life. I have never thought of stealing it from Joey. To insist I have is a really stupid thing to say- a hateful thing to say.

I wish there was some way to get through thick skulls that this news is terribly painful, and it is painful enough without people saying stupid, hateful things. We have a family out in California in pain. They have lost two family members in a sudden and senseless way. Two people are gone, for really no reason at all. IF you want to make it a discussion, let's talk about the issues of services for disabled people, for support of people with disabilities, and the idea of valuing them as human beings, and the sad fact that all too often, society dismisses people with disabilities as being not-people, or half-people, instead of just people. Let's be working to change that, so fewer people like George Hodgins will have their lives stolen from them.

Life With Andy

So in the swirl of life, special needs, IEPs, and spring springing boing boing boing, we are discovering that among Andy's issues, the child can't see. His eyes do not converge to focus. We'll get to see what it looks like Monday (there is some confusion about whether it is THIS Monday or NEXT Monday, but it's coming), but in the meantime, its been explained to us that he basically can't see anything in a strip about 12 inches wide, six inches to either side of the middle. You know, where you would look to do things like read. Or write. Or, well, anything in front of you. He can't focus there.

We have no idea how he has trained himself to cope with this issue, but he has. After all, it is the way he has always seen, and people expected him to be able to read and write. So he learned to do it. As far as we can figure, he uses a lot of peripheral vision and approximating based on the blurry mess that is in front of him. No wonder he gets so frustrated with reading an writing, though! Apparently, he has gotten through so well because he is a clever little fellow.

The answer will be vision therapy, which will basically reprogram his brain and his eyes so that they work together and converge properly. After that, he will need to be completely retaught to read and write. The good news is that his frustration level will go down, so we should see some alleviation of attention deficits- then he can channel all his awesome energy levels into relearning these skills, and getting back to speed at school.

We now have his IEP in place. It was a little odd putting together the powerpoint, because it looked eerily like the one we made for kindergarden, when we were told all these issues did not require an IEP. Same issues. Just two years later, with a new label- "dysgraphia." You know, if they had listened to me two years ago, and looked into this properly, we wouldn't be needing services now. But that's now water escaped under the bridge, I can't take it back. Here we begin.

Long Term Plans

I posted my Goslin meme early, because I didn't think I'd be around my computer with my brain on straight long enough to post it on time. Then I got smacked in the face with yet another report of despair dragging a defenseless autistic young man to his death at the hands of his primary care giver: his mother. It is the kind of story, the way it is being currently presented, that makes me cringe.

There are certain details that make me downright red in the face. The young man had been in a day program with an adult component, and the mother pulled him from it 2-3 months ago. Why? And when she had trouble getting him into another program, why didn't she contact the old center? We need more information there. Why was he pulled without having another place to go set up? That's about as wise as quitting your job without another lined up when you live paycheck-to-paycheck, then wondering why you can't pay your rent. Was there a problem at the center? Had she tried to get him in the adult service and been denied? What happened there? It doesn't make sense. Then to break down in only 2-3 months of care? There is something wrong there, too. I know lots of folks with severely disabled kids who do the day in-day out thing for years before they even start pulling their hair out. Again, not enough information. Was she completely unprepared for the responsibility and effort? Was his behavior particularly challenging? The descriptions of the young man do not suggest that, but we simply do not know. (And challenging behavior is still no reason to kill someone.)

And in the end, who has the right to pull out a gun and kill another human being, for any reason? Call me cold, but the whole murder-suicide thing? I'm not very sympathetic to the murderer. It is one thing to take yourself out- that is tragic enough, and serious enough. I have very definite thoughts about suicide, and I am with those who say people do not "commit suicide"; it is more appropriate to talk of someone being "lost to suicide." To take someone out with you? You are moving into a realm beyond any reason. Obviously, when you are in a state where you are suicidal, you are already not in a "typical" rational state. It is bad enough to lose someone to suicide. To lose your family to suicide and to murder at once? My brain goes scrambled-eggs just trying to wrap it around such a concept. You never have the right to kill anyone, unless they are about to kill you. And I mean directly. The whole thing makes no sense. We lost two people in this incident: a young man who was doing his best to live his life, and his mother, who decided to end both lives for reasons and purposes unknown to us.

But it is something that sets me thinking, as I watch Joey and think about his upcoming IEPs and his needs and progress and "current level of performance" etc etc etc. There is much talk about kids "aging out" at 21- but this is only if it is decided that the school is still supposed to be supporting your child with educational service after age 18. With kids like Joey, who are academically on grade level or beyond, it is a much harder fight to keep them in the educational system beyond the age of 18, when their typical peers are graduating. And either way, what happens to Joey after graduation, if he is not able to live independently (yet)?

Yeah, I haven't gotten much sleep lately. Thanks.

Most of my plans and counterplans and back-up plans consider this possibility. What if Joey cannot go out on his own yet? Or, since we have no clue what the future holds, ever? Am I ready for him to stay with us forever? We aren't talking about the kid who never gets it together to move out of mom and dad's basement (though that is also a possibility- for either child- you never know). I'm talking about the possibility of Joey needing extra support, and enough of it that putting him in his own apartment would not be a good option. What other options might be out there? Am I ready for him to stay here?

I don't know too many parents who have adult children or adult loved ones with need for support to the point that living independently is a limited option, or not one. I have a friend who started a group home for her adult daughter- she had the resources to do that, and it has worked out nicely. I have a colleague who surprised me one day when my Joey was first diagnosed by revealing they had an adult child with neuro-developmental disabilities living at home (and that their adult child brought much joy to the family! Thank you for sharing that part, too!) We have a neighbor with a younger adult child who has a job with a local company and still lives with them, and that seems to be working out well for them. Would it then be a disaster if Joey remained here with me?

Hello- no. I love Joey, I love being with my Joey, and we are very very very fortunate that 1. he is Joey- a delightful and wonderful human being and 2. he functions currently at a level where the issue of supervision is not as dire as many other families I know. Yes, I have to keep the doors locked, and we have our wild days, but for the most part, Joey is Joey, and he lives in a world that fits comfortably within the family scope and understanding, just like all the other family members, no problem. In fact, if Andy develops needs that meant he couldn't live independently, I'm ready, thinking about how we would all live here together as four full adults; but I know the possibility is higher with Joey than with Andy.

Then, what happens if something happens to me? Or more correctly, when something happens to me, and to JoeyAndyDad?

And that is when the planning goes into overdrive.

Joey is nine years old. We're over halfway to 18. We don't know what the world will look like in nine years. More like 8 years. What plans can I be considering and implementing now, to be sure when Joey ages out and I prove to be mortal like everyone else, Joey will still be able to enjoy his life and live it? That he will have resources to recover from the loss and move on? A better plan than "Andy will have to take care of that"? Yes, its time to start thinking about what balls might need to be rolling to prepare for the future. after all, they aren't little long- and once you are an adult, you are an adult for a long time (we all hope). We all know adult services are seriously lacking, everywhere.

Seriously lacking. Or non-existant.

So it is time to get started, since I doubt I will be winning the lottery anytime soon to start my disability school and family center. Though I admit to buying tickets. After all, that money goes to fund the services we already use.

My Goslin Meme, Slightly Early

Spread the Word

It happens all too often when I am out in public. The grocery store. The park. A museum. A bank. I don't even know why I bother to go into Walmart. The r-bombs, dropped everywhere, all around, no thought to anything, or anyone.

Going online, its like a blitzkrieg. That's so KABLAMO! Really? You are so WHAM! Come on, don't be such a KAPOW!

Gotta love the responses when you say something, too. Did you know you can offend someone, even when you "don't mean to"? That something can be hurtful, even if you "don't mean it that way"? That referring to yourself by a derogatory term does not make it less derogatory and insulting?

Then there are the folks who mean it just as they say it, and have no qualms with telling you that people with disabilities don't have the right to be educated, or accommodated, or even to live. Waste of breath, waste of resources, waste of time. After all, what do kids in special ed have to give back to society, anyway, after we spend so much money on them? Why not just let kids with severe physical issues just, well, die?

Going through life seeing red is really bad for my blood pressure. And I already have enough issues with my blood pressure, thank you very much. The sheer disrespect the use of this term spreads and reveals is enough to make one run screaming into the night, without people actually trying to defend it. And people who really think people with disabilities are a waste of space? They forget that it could easily... easily... be their kid. Their sibling. Their parents. Them.

And the "oh, I don't mean Joey" excuse? Yes, you do. Because that term is tossed at him all the time, used to refer to him, whispered behind his back and snickered at him from across the room all the time. So yes, when you are using this term, you are referring to my son.

And you know the real kicker? Joey doesn't even have intellectual disabilities. It isn't a term just about intellectual disability. It is a term used to degrade and dehumanize anyone who is seen as different, who talks a little differently, acts a little differently, is interested in different things or in different ways. It dismisses everything about people that is positive, constructive, and human. Joey's talents in math, in reading, in visual perception? Out the window. Because retards don't have strengths. That is how that term is being used, understood, bandied about, and wielded. Useless, ugly, stupid, irritating, waste of time, waste of space, contemptible, odd, crappy, disgusting, slow, insignificant. That is what you mean.

That is what you say about my sons when you use this word.

Please. Stop.

Message Boards are not good for my blood pressure

Tired of reading jerkface comments on news stories about ADHD and autism from people who scream that one or their other (or both) are "overdiagnosed" or don't exist. I also get tired of people who stomp their feet over the interventions used to help kids learn to cope, focus, and self-regulate. I get so tired of people who chose to remain ignorant.

It can only be by choice at this point. The extensive awareness campaigns for autism and ADHD in the popular media should at least by now have gotten through the thickest skulls that there are people out there who are different, and who may need extra support- therapies, medications, whatever. But no. Idiots and selfish, ignorant numbskulls remain.

Trying to speak reasonably to such people can be an exercise in blood pressure control and deep breathing. After all, the majority of them are not reasonable themselves. They send you to websites that are so obviously hate-mongering snake-oil-selling conspiracy-theory gibberish that you wonder how they are getting through life without a room full of diet pills and turnip twaddlers. Or maybe they haven't.

Here's the truth, folks: ASD and ADHD are both very real, and they affect both children and adults every day. Not everyone who are ASD or ADHD require medication, but some do. Occupational therapy, speech therapy, physical therapy... there are lots of interventions out there, far more than 30 years ago when I was a kid, and I thank God for it. Because seriously, that question, "where were those kids thirty years ago?" is plain annoying. Where were they? ASD kids were labeled weird and mentally retarded (using the term of the time), and all too often locked away, sent to special schools or self-contained rooms, or bullied out of school altogether. ADHD kids were labeled disruptive, often became angry, and as they grew older, often fell to self-medication through illegal substances or alcohol abuse. Growing up believing they were lazy and stupid, many resorted to extremes of behavior, and even suicide. Yeah- those kids.

Today, those kids can be supported and be functioning participants- very valuable participants- of classrooms and communities.


I really wish these people would go volunteer for their local special ed classrooms. They would learn SO MUCH... including some lessons on courage, perseverance, and humility.