All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.

The crying white monster on Yo Gabba Gabba

                                                      A NOTE!
For some reason, I've figured out that these pictures come up very high in the Google Images search for pictures of Yo Gabba Gabba.  I hope if you've found them that way, you don't mind that this isn't really a Yo Gabba Gabba blog!  It's a blog about my daughter with autism.  If you'd like to learn more about life with a child with autism, this post----  link --- is a bit of a sum-up I posted recently. Thanks!

Janey's latest passion is Yo Gabba Gabba. For the uninitiated, Yo Gabba Gabba is one seriously weird TV show. It's the kind of TV show I could picture being watched on college campuses after, well, illegal mind altering. It is about a guy, DJ Lance Rock, and his gang of toys that come to life, assorted odd little guys. There's lots of music by alternative type bands, lots of far out animation and weird cut scenes. It's the kind of show you watch the first time and think "what the heck?" But after time, it grows on you.

My favorite part of the show is the very, very simple social lessons it teaches. I think someone involved in the show must have a child with autism, or understand autistic kids, because the lessons are taught in the way we have to teach Janey. No long fables, no coming to your own conclusions, no vagueness. They are saying like "Don't Bite Your Friends", "Don't Hit Your Friends", "Don't Say Mean Things to Our Friends", etc. They are sung over and over, and illustrated with very simple little scenes---one of the monsters gets over-excited and bites his friend, one of the guys hits the other and so on.

And there's an extremely weird character that's on a few shows that truly impresses me, in an off-beat way. It's a crying monster, Gooble. The monster is tall and white and obviously very sad. The other characters do ask why he cries all the time, but DJ Lance Rock pretty much tells them---we don't know, but we will still be nice to him. He's our friend.

It struck me seeing this how very, very rare it is on kids shows to see an emotionally different child. Kids shows are chock full of lessons about not treating people who LOOK different than us differently. Any kid watching TV much at all will learn that lesson a thousand times over. We learn also about kids in wheelchairs, kids that can't see or can't hear, and kids that talk different languages. But when, ever, do we learn that some kids ACT differently? And act differently FULL TIME, not just shows about kids having a bad day and crying and then it gets figured out and fixed? I don't think much, ever.

Janey cries a lot. There are days she cries most all day. She is a lot like Gooble that way. We usually don't know why she is crying. Kids have asked me that, and I don't have an answer, except just that Janey is that way, sometimes. Other days, Janey laughs all day with no reason, or sings the same song over and over, or looks blankly into space, or plays with her hands. This isn't an easy, 20 minute show, problem. It's not that someone took away her toy and she is sad about it, or that she is not feeling good. The emotional displays are part of her. So it amazed me, thrilled me, that a show actually seemed to get that kids need to learn that. It's a great, great lesson. We are all different, not just physically or in terms of abilities, but in terms of how we act. I'd love to see more kids TV that addresses that. If the rise of autism is true, I would bet it's a huge growth market for TV.

Meanwhile, we'll be enjoying the inspired weirdness of Gooble and the rest of the gang.

Pets and autism (or cats and autism, anyway!)

I've seen some articles lately talking about a study on the benefits of pets for children with autism (here) An interesting part of the article was that the benefits weren't seen if the pets were around from the time the child was born, only if the family got a pet around when the child was 5. Now there's a helpful idea---when you have a baby, on the off chance the baby might become autistic, hold off getting a pet until they are 5, to reap maximum benefits. I joke a little, of course, but it's like so many studies and articles I read. They might be interesting, but they are of little practical use in Janey's life. I wish the money spend on this kind of studies could be better used.

How do the cats affect Janey? Not much, I guess because we foolishly had them since she was born. But seriously, it's like the cats most times are in a parallel universe. Janey pays them no mind at all. She doesn't generally touch them, look at them or play with them. Even if they run right into her, she just brushes them off. Freddy has been working on this, trying to get her to pat them, and that has shown just a little bit of success. The other day, we were shocked when Janey tried to pick up one of them, Vernon, our most standoffish cat. He didn't let her, slipping out of her attempt, and it was interesting that was the cat she chose. Maybe it was because he doesn't try to get her attention (not that any of them do, too much)

I've written before about how Janey used to love dogs, then became terrified of them. Now she seems a little more okay with them, and although it's never going to happen, I wonder how she would do with a therapy type dog, a dog that loved her and showed her a lot of attention. I think it would be frustrating for the dog, but I could be wrong.

I've thought a bit about horse riding therapy, but it's expensive and also not in the city. I wonder how Janey would do with that. Horses might be big enough so they almost seem more like a form of transportation or a ride to her than an animal, which could be good but kind of misses the point.

I've heard people say that all cats are autistic, but if you really know cats, that's far from the truth. The cats in many ways are more socially aware than Janey is. They follow my non-verbal language carefully. They know as if by psychic means if I am thinking about feeding them, and respond by lots of noise and getting under my feet and pointed looks to keep me going toward the food. They watch each other closely, and they play-fight, snuggle each other, have a leader and followers, they act differently when strangers are in the house---they are very social in a lot of ways. Janey does some of those things some of the time, but none as consistently as they do.

My conclusion? I wouldn't rush out and get pets for your autistic child in hopes of a social benefit. But I wouldn't NOT get them either. I think this is an area where autistic kids are as different in their attitudes toward animals as non-autistic kids are.

Misguided remarks

I'm not going to try to demonize Joe Scarborough, who made comments saying that the shooter in Aurora sounded like he was on the autistic spectrum, more specifically someone with Aspergers. I know he has a son with Aspergers himself, and I don't think he meant the comments to be cruel or hurtful. But they were very misguided. I don't think he must really understand what at least the vast majority of people with autism are like.

Here's an article about the remarks.

On a very basic level, the reason I don't think someone on the spectrum could or would commit a heinous mass murder is because they quite simply are not motivated by much of anything that involves other people. They would not have the kind of hatred that would lead someone to kill others. That kind of sick hatred is in a very twisted way a social feeling. It's a crazy social feeling, but it's a social feeling. I don't think Janey would, even if she were higher functioning, have enough interest in people she didn't know to want to hurt them. If you go to Janey's summer school and see the hundred or so autistic kids there, you will notice very, very little if any fighting or arguing or teasing or annoying of kids toward each other. The kids do their own thing. Sometimes they imitate each other, and some do show affection to each other, mostly higher functioning girls. But I don't see meanness, or even mild purposeful annoying. That's not in their make-up.

I am not saying that someone with autism or Aspegers could never kill anyone. I think if they ever did, it would be an isolated event, probably having something to do with a special interest. This sounds like it might have been the case in an awful situation in our state, where a boy with Aspergers killed a classmate at his school. He was fascinated with CSI type shows and criminality, and he took it to a criminal level. He is in prison, and he should be. But that is nothing like the Aurora killings.

Here's an article about that case.

I am sickened by the Aurora case. I won't write more about it, because it's outside the scope of this blog. But I do want people to understand that it was not an act of someone with any kind of autism. I would be willing to bet the crime rate for people with autism is the lowest of any demographic you could think of. And Joe Scarborough should have known better than to say what he did.

Social skills lessons with the cats

I hit on something fun the other day with the cats and Janey. Generally, Janey acts like the cats don't exist. It's kind of like I picture the regular world and the magical Harry Potter world interacting. They share the same space, but they just don't usually see each other. The cats can get right on Janey's lap, and she acts like it's not happening. And if you know cats, you know that they are not very hurt by this, and in fact like her a lot for her indifference. But sometimes I wish she liked them. One of them, Gusta (short for Augusta, which was actually one of the names we were thinking of for Janey) was sitting around recently looking at Janey. I said to Gusta "Say Hi to Janey, Gusta! HI!, Gusta! What do you say to Janey? HI, GUSTA!" It's the kind of thing we say to Janey, to try to get her to say hi. Of course, Gusta wasn't buying, but Janey actually got it and laughed and laughed. Then she started saying it too "Hi, Gusta! HI! Say HI, Gusta" and added on "Look at me and say hi!" Since then, she wants to play the game over and over. I think it appeals to her that the cats are far worse at it than her. I'm not sure she gets that the cats are in fact SO bad at it that no amount of coaching will EVER make them say hi, but that doesn't matter. It takes the focus off her while giving her some practice, and the cats do interesting things that stuffed animals in that role wouldn't do, like sometimes jump down and go away while I call after them "Gusta! That wasn't very polite! You could have at least given Janey a High Five!" which got her laughing again. It's probably good for me too, as I struggle not to ever say things like that to Janey, but the rules are different for cats, who are not being affected in terms of their feelings or their long-term development, which, to make a run-on sentence, is one of the reasons I love cats. And we need silly, fun times with Janey. Lately she is really wearing me out. She's still "testing limits", which is the polite term for being extra naughty. I think it's a step forward in the very long view, but it added to often not getting good sleep and just the general life with a disabled child is enough to send me into long naps during my precious daytime alone time. So I have to grab fun with her when I can. And hey, maybe one day the cats WILL say hi back. Or at least master the high five.