Are You Aware? IX

One of the things we are working hard on here is moving Joey into inclusion settings. That means slowly moving him out o the more protecting settings of self-contained special education- where all the children have IEPs- and into the general population. One of the bigger hurdles is the parents of non-disabled peers. there is a general belief that their kids are better than my kid, because their kid isn't disabled- as if the benefits of inclusion go only one way. Joey's strengths and talents be damned.

Today I bring you a video about inclusion and the attitude of being inclusive. If you've ever wondered about the benefits of inclusion for your non-disabled peer- remember the attitude of acceptance that it implies. Your kid may need to be thinking about it when they hit those hard middle school and high school years.

Bring It On! Birthday Celebrations!

Happy Birthday to my little Buddha Buddy!!!

We took the boys out to dinner, just for fun. Joey of course got Mac and Cheese. I also took one of his presents with us, a huge box of crayons! He really liked getting something at the restaurant. Having it be a huge box of crayons was extra bonus. The boys had a really good time, and did a good job staying in their chairs and eating their food. I was very proud of them!

Then it was time to go home and open more presents! Mrs. H sent this awesome Wubsy toy for the bath, and Joey ran right up at bedtime to take his bath and try it out. When you put soap on it, and squeeze it, it makes suds. (It works.) He was also very pleased to get his own clock for his room (part of the stay-in-bed campaign, but he hasn't really figured that out yet), a bubble machine, a ball-dart game, and an electric Uno game.

What was super-cool was that he figured out:
1. he was getting presents
2. they were for him
3. he actually liked opening them, and did it with some speed.

He would open one, look at it for a minute, ask for batteries to be added when appropriate, and then moved on to the next gift. It was incredible. He really wanted to fixate on the clock, but his hands went out and picked up the next package and got going. This is an amazing advancement over Christmas, when he opened one package, saw it was the car he wanted, and for him, Christmas was done. The rest were just chores, requiring the entire day to plow through, more or less.

Then we had cake! Another amazing feat- Joey blew out all the candles, all by himself! Yes, it took three puffs. Who cares? He was excited, he was happy, he blew hem out without any help from Mommy or Daddy. Totally, totally awesome. My baby is getting all growed up!

Joey put on a whistling concert while I cut the cake (that's right- the child whistles... without his front teeth. No, I haven't a clue how he does it. He's just proud and pleased as punch to be doing it.) Then we all had the cake he asked for- one with sprinkles inside and outside, and chocolate frosting. Yum! (We took the blueberry muffin-cupcakes with blue frosting in to school, they were yummy, too.)

Happy birthday, little buddy! May there be many, many more!

HAPPY BIRTHDAY JOEY!!!!

I let the boys pick their birthday theme. For past couple of years, things have been pretty predictable. Andy wants dinosaurs. Joey likes Cars. So this year when I asked brightly, "Joey, what do you want for your birthday?" I was a little broadsided by the answer:

Pinky Dinky Doo.

In case you were wondering, Pinky Dinky Doo is not widely merchandized. You can't just run out to the party store and pick up some Pinky Dinky Doo plates and paper and call it a day.So we've been working on this for a few days, and finally came up with a plan. I printed out coloring sheets, colored them, and stuck them onto a plain white paper tablecloth. I've also put up some sheets as decor. I might do more if I have some energy tomorrow; I'd like to stick up some birthday Fluffy Buns and that sort of thing. Grandma is working on the cake, I can hardly wait to see it!

Happy Birthday, Joey. We love you.

Are you Aware? VIII

Navigating the world of special education can be a real challenge. Often we discover we not only need to be teachers, therapists, ad doctors, now we also need to be lawyers, just to protect the rights our children have under law. The shocking ignorance of the law in school administrators and other folks who are supposed to be providing services to our kids creates an atmosphere of stress for all concerned. (We won't even discuss the school personnel who seem to be deliberately attempting to circumvent the law). Folks who don't have to fight for every facet of their child's education and well-being have little idea of what special needs families go through just to get their children basic education!

We can't control administrators. All we can do is educate ourselves, and do our best to be positive, effective advocates for our children. KNow your rights, know the rights of your kids. For a great place to start, check out Wrightslaw.

Wordless Wednesday: The Blue Bunny Claims Another Victim

Are You Aware? VII

In the new campaign to "end the R-word" I've gotten a lot of comments to the effect of "Joey isn't retarded, what do you care?"

Just for a moment, let's put aside the fact that we are all human beings, a huge thing to put aside.

One of the organizations that does a great deal here for autism and services, especially adult services, is the ARC. For those who are unaware, and it take a bit of initial digging to discover, this organization's name stands for Association of Retarded Citizens. Originally set up to support people with mental retardation, it has became apparent that many of these citizens were actually autistic, yet still require advocates and supports. The ARC has stepped up to the plate to include many intellectual and cognitive disabilities; autism, with its outward signs of communication and social challenges, is included.

Please check out the ARC and what it does in your area.

Finding a Good Book

Since Joey has begun reading, we were hoping to see him take an actual interest in reading. After all, reading gives us a whole new avenue to get information to him, and he does really well with it. We have bought a plethora of books of all types, a huge range of topics, anything to try to catch his attention. I could open a library, and I don't see that as a bad thing. I figure once his interest gets caught, he might start devouring them like Cookie Monster in a bakery.

But that didn't really happen. We encouraged him to read books, let him pick out the books, but it always seemed a chore. He did have a Blues Clues book he liked to read, but only at bedtime, and it was far below his reading level. We had another bright spot when he brought him Mouse's First Fall from the library, and read it to me. Joy of joys! But when he got his own copy, it was returned to the shelf- and again, it was far below his level. I figured the real excitement for him was the success; he could read these books all alone.

Lately, he has shown interest in Do Unto Otters, a book about manners, and would read that to himself at bedtime. However, he preferred certain pages to the whole book, mostly the one with the word "Snotter." Oh dear.

Then I bought a Pinky Dinky Doo book (Back to School). It is closer to his reading level, though still a little below. He's been loving watching Pinky Dinky Doo, so I thought it might catch his eye.

He's been carrying it around as if it were Bus. He reads it on the couch. He reads it in the car. He reads it in bed.

Folks, I think we have found a winner. And may there be many more to follow.

Are You Aware? VI

Here's one off the beaten path: what about communication? One of the greatest hurdles for kids with ASD is effective and functional communication skills. Finding alternatives to speaking can be a great thing, especially to lower frustration and increase communication. Keep in mind that the goal is often not perfect speech or even language, but communication.

We found sign language to be a great support for Joey. He was better able to process both receptive and expressive language with the signs as visual and kinetic cues. Although he doesn't do a lot of signing himself, often using signs (especially in chaotic environments) really helps keep Joey focused and communicating!

Want a quick, painless way to pick up some functional signs? We recommend Signing Time!

Are You Aware? V

I was referred to this post by a great parent, Niksmom. When I talk about "Are You Aware?" I want to remind folks that there is a difference between knowing something and understanding something. Awareness needs to mean an increase in understanding, not just knowing.

And this article by kristen is exactly what we mean.

Are You Aware? IV

Some of my favorite links for awareness include little essays and stories about being a special needs parent. How did I feel about parenting and parents before I had a special needs child? How do I now relate to those Other Parents, the ones who are living a life that now seems so far away from mine. How can I explain to those Others what parenting is in my life? How do we reforge those connections of "Parent"?

One of the essays I liked early on was Mother at the Swings by Vicki Forman. It describes a scene I find myself in so often- being at the playpark, with one of those Other Parents who want to connect, and don't know how, but are trying their best. The paradox of isolation while standing with Others doing with they are doing is something I related to at once.

Are You Aware? III

When researching autism, it is a good idea to consider a wide variety of experiences. A good place to look for a variety of blogs is the Autism Hub.

Campaign update

Last month we started charting out a number of campaigns to encourage independence. So... how are they going?

Well, if you were expecting me to come back a month later and report spiffy rooms, made beds, yummy sandwiches, and new jeans put on by a child who spent the whole night in his own bed, then excuse me while I laugh myself silly. I believe these days are all coming, but such campaigns are kind of like IEP goals- see where you are a year from now.

However, if you were expecting, like me, just some progress towards the goals, then we're doing just fine. Mostly. Considering we've had a rough patch (ah, spring...), any progress is a victory. I don't expect any serious progress until we can get through the rough bits and really focus on the campaign goals.

Joey has successfully made a peanut butter and jelly sandwich, with some help. Our first step into a wider world. I have purchased wheat flour, yeast, and honey, but have not really gotten to open up the Elmo cookbook and get going. I need to either improve my prep skills so I can be cooking with two kids at once, or I need to create more one-on-one time for my guys.

The bed-making campaign has not been started. That will probably be easier to start after we get him to sleep in his own bed all night- which we also haven't started. They aren't little long. I am torn, though I know it is a good thing for forwarding independence- I will miss waking up with a little guy snuggled in.

Dressing has been tricky. I have him consistently dressing himself, including picking out his own clothes, taking off his pajamas, and putting on all his clothing independently, but we still haven't added fasteners. I have, however, managed to get some jeans as hand-me-downs from a friend in his size, so we're ready to try.

However, I think we'll be taking a brief break here, as Joey has his turn at Grandma's getting spoiled tomorrow. He's earned it.

Are You Aware? II

Part of being aware is knowing people who are autistic, and knowing families with autistic loved ones. A great way to understand autism and and remove the fear is to read blogs related the experience of the autism community.

So today I'd like to bring out one of the best-written ad affirming blogs on living with autism: Whitterer on Autism. Go check it out!

Are You Aware?

I am celebrating Autism Awareness Month by posting links I think people new to the autism community should know about- places and faces and organizations that everybody would be better off knowing.

My plan is to do this every day. Please place your bets on whether I manage this. Ha ha ha.

Anyway, my first link?

Autistic Self-Advocacy Network. You'll know a lot more about autism when you know a lot more autistic people. Joey teaches me a lot, but when I am working for autistic services and right generally, its not enough to know just my son. Also, on of our goals is to help Joey be able to advocate effectively for himself- no one knowshis needs better than him.

We Are All Unique

Here comes Autism Awareness Month. Let's work hard to bring in real awareness of the uniqueness of all individuals, including autistic people. Respect for everyone is key to a bright future for all of us.

Blowback

We are having a whopper of an afternoon. Joey has so far broken one of Andy's toys, written all over one of Andy's artworks, and "ruined" something else we haven't yet clearly identified, but JOey came out and informed Andy of the deed. In the world of sibling rivalry, it is the deliberate nature of this destruction that is concerning us most. Here come our deerstalkers and pipes- another mystery is upon us.

Is this simple sibling rivalry? Are we acting out in place of lashing out with words? Instead of calling brother names, we scribble on his things when he isn't complying with our wishes? And what does Joey want? Does he want Andy to play with him? Was there some other action we missed- for example, did Andy tease him, hit him, threaten him? Did Andy tell Joey to go away?

Is this something deeper? Is he lashing out against his brother because he is having troubles elsewhere? Is he using Andy as a surrogate to lash out at, instead of someone at school or the playpark?

Is this a acting out against something totally unrelated? Other frustrations, other issues, other discomforts?

If we solve this mystery or not, we still need to do something. This is not acceptable behavior. Joey needs tools for dealing with frustration, discomfort, and unhappiness that are not destructive. We need to help him manage stress. He needs a better way to communicate stress. Screaming at the top of his lungs when we express our disappointment is just not that helpful or constructive.

UPDATE: We finally got Joey calmed down enough to talk to us. Apparently, some of the kids at school are calling him names, and it makes him angry. He felt much better after telling JoeyAndyDad all about it.

On the Playground: Another Day

Not one to waste a decent afternoon, I took the boys to the park after Joey got off the bus today. We've been spending a good bit of time at the park whenever we can, because it is good for the boys and Andy begs to go. He likes it best when there are lots of other kids there. It likes it even better when Joey is also there, because he is guaranteed a playmate.

However, we have been increasingly running into issues at the park. Joey has a very set way of dealing with large spaces, with other people, and with play. He cannot see a couple of kids playing and just jump into the game; he has to be told very specifically what the other children are playing, and what his role can be. This has left him open to some very unfortunate situations when children are not so nice, and there are some children at the park, and even in his classes at school, who are, to be frank, mean. They don't just casually exclude Joey, or fail to include him; they actively go out of their way to make it clear that they are shutting him out and casting him off, so that he knows it. Honestly, it takes a good deal of going out of your way to make it painful enough to Joey that he actually says something about it and knows you are doing it on purpose. Little jerks.

Joey and Andy kind of help each other on the playground, as many siblings do. Andy often gives Joey a few extra cues to catch on to a game, some extra repetition to pull him into play. Also, nobody messes with his Joey. When he sees those mean kids taunting him, he has been known to walk right up to them and say, "You weave my Joey awone!"

However, this propping of his older brother sometimes gets on Andy's nerves. He wants to run and be in the game. Also, often Joey wants to play with Andy, but not always the game Andy wants to play. The natural result is that Andy wants to go play the game he wants to play, not the game Joey wants to play with Andy. The result is frustration, and often a few rounds of "I don't want to play with you!" and someone's feelings being hurt- usually Joey's.

Keep in mind that the vast majority of time, the playground chorus is, "Come on, Joey! Come play!" from Andy. Or after a few minutes, Joey's offers of, "Andy! I want to play with you!" is often met with unreserved enthusiasm. But a touch here and there, Andy gets tired of Joey, and wants to play with someone else and do his own thing; and Joey has a very difficult time playing with anyone else, because he and Andy know each other very well, and so Andy automatically and efficiently compensates for Joey's needs. Andy knows how to talk to Joey, how to play with Joey, how to draw Joey into a game and include him. Because of Joey's difficulties with language and social cues, other children have a harder time even when they are trying to be inclusive.


We were in the middle of a "I don't want to play with you!" mood. Joey gave up and started playing alone on the slides (I offered to push him on the swing, but I guess playing with Mom isn't always cool when you are feeling uncool). Andy headed over to the merry-go-round. Not too long ago, the idea of Andy getting on the merry-go-round was ludicrous. He still doesn't care to get on it, he prefers to push, or kick slowly and control the speed. But this time, he was with some new friends, a boy about his age, another older, and a third probably between the other two. They were playing pirates, and they all piled onto the merry-go-round to go "sailing." The bigger boy started pushing, faster, faster. I moved closer, because I knew the breakpoint was nearing. It was crossed. Andy hates feeling like he is going to fall off, and the merry-go-round was going too fast. He started to wail.

Suddenly, Joey darted in from my left. He must have heard Andy and slid down fast to get there so quick. He was calling to the bigger boy, "Stop! Stop! Andy doesn't like to go fast!" and he grabbed the merry-go-round and dug in his heels to slow it down. The other boys were voicing their displeasure, but Andy hopped off, Joey let go.

"Can I play with you, Andy?" Joey asked.

"Sure, come on, Joey!" was the happy reply, and they both ran off to the climbing platforms, leaving the new "friends" behind to spin at their own pace. Because, after all, they're brothers. That's what brothers do.

Defeat

One of the great myths of autism: people with autism understand things very literally, and therefore do not "get" jokes, especially jokes involving puns or other non-literal language.

Joey has had a very difficult time with knock-knock jokes. After all, knock-knock jokes require punning.

Knock-Knock.
Who's there?
Blue.
Blue who?
Why are you crying?

Joey's version:

Knock-knock.
Who's there?
Blue.
Blue who?
Blue is my favorite color.


Yes, the literal side of things shines through. Uncle Lou, famous in my family for his jokes, even did his best to get the point across when we visited at the holidays, to no avail. I think it really hit my family that Joey really is different when they couldn't get him to understand a joke. Fortunately, I bet Uncle Lou will keep trying, because it is clear that Joey understands that you are trying to make a joke, and that jokes are supposed to be funny. He just can't figure out how they work- and the faces he makes are precious.


I was in Andy's room, reading our bedtime stories, and generally trying to convince the little guy that he was, indeed, sleepy and needed to be rested for school in the morning. I had just gotten him tucked in, and snuggled in (Andy likes to be snuggled to sleep. Oh, gosh, darn. ;) ), when here comes Joey.

Joey hops into the bed, sticks his feet on my tummy, and giggles, "I defeated* you!" and leaves.



Myth busted.





*De-feeted.

Wordless Wednesday: Field Day, First Grade

Overheard at Joey's Bath-time

“Hey! I said no bubble bath!”
“What, Daddy?”
“No bubbles! You added bubbles! And I’m going to tell you when to turn the water off tonight, and you will turn it off.”
“Awwww. “
“Oh, wait, you didn’t have bubble bath last night, did you? You’re OK then. I’m sorry, Buddy!”
“That’s OK! Thank you for saying yes!”