Shh...Mum is Thinking

Sunday, July 30, 2006

No News is Good News

It’s been a longstanding tradition in my family that dinner time is news time. Our favourite news, one with a more global than local view, comes on at 6.30. This is such a long standing tradition that I don’t have to tell the kids to turn the news on when we’re ready for dinner; every night is the same. They help set the table with items I hand over the counter, fetch the cups and turn on the tv to the channel we watch.

Over time, we’ve adopted some unspoken ground rules to our dinner time/news time:

First, you’re not allowed to talk (about the news item you’re watching, anyway) until it concludes. You can ask someone to pass the salt, or please wipe the mashed potatoes off their forehead, but no questions or comments about a news item allowed until it is finished. Otherwise we might miss something important.

Secondly, we’re not allowed to give opinions. Well, you can say “That’s sad.” “That’s good!” “That’s interesting.” Otherwise it’s just facts, please. We adults save the knock-‘em-down drag-‘em-out (verbal!) debate stuff for after the kids bedtime. We don’t like the idea of indoctrinating children to our opinions; to us, it just seems better to give them facts and wait till they’re older to talk ‘opinions’ . When they’re old enough, they’ll have the right and obligation to form their own opinions, and we’ll hash things out then, I guess. In the meantime, this part of our dinner time tradition can be highly amusing when, for instance, my husband or I have to give the ‘other side’ of a debate we’ve had. Kinda funny to hear my husband give my opinion to the kids as though it has equal weight to his own. That works both ways of course, but it’s only funny when he does it ;-)

Our news is good to warn us about disturbing images coming up; Mum keeps the remote handy for a quick switch of channels. This is the third rule. Mum has the power of censorship. It’s the one time I get total control of the remote, and I glory in that power.

Click!

No more bad stuff.

I’m excercising that power completely now, in the same way I did after 9/11. My kids have become increasingly upset at some of the stories we've heard and pictures we've seen-- and not just the violent stuff. Families separated, running in fear, buildings bombed, children hurt and crying, parents weeping, old people displaced. The last news we watched had us all choking back tears, and I realised enough is enough, at least for now.

We'd best not feed the children grief along with their daily bread.

Please don’t think I’m taking sides on this issue. This isn’t even dinner table rules taking effect, it’s just that the issues are so complicated in the Middle East that I couldn’t begin to say who is right, who is wrong, what should be done to fix problems for which hundreds of diplomats and heads of state over scores of years have failed to find solutions.

I’m just sad. That things can’t be different, better, peaceful. Sad for the ordinary people who suffer and wish for peace, but cannot find it.

Sad for our children, who will unavoidably inherit this grief.

I’ll miss our news time together.

Friday, July 21, 2006

I Feel...

Happy...

...because I made something for my youngest son this week that has him tickled pink and thrilled. And I've almost finished a painting that has frustrated me this last month...can't seem to get it just right, but it's allllmost there! Whew...

...because during our speech assessment last week, the therapist told me she is starting a social skills group and she thinks it would be a perfect fit for my son. I'm so hopeful this will be a good experience for my little guy, and maybe a way to meet some children (dare I hope for a close friend, even?) who are quirky and different...who are similar to him. We're lucky we live next to a park, so there are almost always a few neighborhood kids for him to socialise with everyday, but I'd really like him to meet more spectrumy kids. Will this make him feel less lonely, I wonder....less. Different? I hope so. I know I gravitated towards those type children when I was in school :-) It was just more comfortable. Ahh...the blessing of having quirky friends when you're a quirky kid...

...because I made paella for the first time this week. We researched it beforehand--the kids and I were thrilled with this little gem: http://www.vivaspanish.org/PaellaVideo.htm . They must have listened to the music 10 times in a row, and were giggling and singing "Hey! Hey! Hey!" I learned NOT to use paprika in the recipe, though, and not so happy about that. Ew. Made a note on the side of the printed out recipe...NO paprika. Gak.

...because my David Ford cd came in the mail :-D Bought it on the strength of this from NPR: http://www.npr.org/templates/story/story.php?storyId=5560603 I'm so out of the loop with popular music at the moment; I usually only listen to the news on the radio. I don't even know if this is something most people would have heard already. It definitely touched a deep nerve with me...he sings like a street corner prophet in this song, while the music gradually builds to an eye crossing cacophony, then ends with motes of dust settling. Doesn't sound like much of a recommendation lol, but I LOVE it. And geez, I love NPR, too. What a great place to find interesting bits of music, news, science information. Too cool...

Confused....

...about a friend of mine. Maybe it would be more appropriate to say she's a close acquaintance-- met through a one of my husbands work mates--our families have gotten together a few times, and I really like her and enjoy her company. Her husband called awhile back to tell us she was having surgery, and I knew her family was there to help out...so I waited a couple of weeks to call her and see how she's holding up. She sounded hurt I hadn't come around or called sooner, and I feel so bad. See, I thought it was best to give her time to recuperate first. That's what I would have wanted, I'm pretty sucky at putting on a happy face or chatting when I'm sick or recovering. I just feel sorry I misjudged how SHE would feel. I wonder if it would help to make her something really sinful (cheesecake? Baklava?) to show I really DO care. In fact, that's why I waited to call :-( I didn't want to bug her. argh...

Amused...

A couple of weeks ago the heavy wooden header over a sliding door that separates our living room from the kitchen area fell right off the wall when I closed the door. It had been a bit wobbly lately, I really should have gotten up there and tightened the screws sooner...just lucky it didn't hit one of the kids on the head. It hit my wrist as it came down, narrowly missed hitting my monitor on my computer desk, and smashed a pottery jar sending pencils, paperclips and pottery shards up in a cascade of debris. Now, I don't normally curse, out loud anyway :-) But it felt a bit like the world was ending for a few seconds and I let out a loud "Holy SHIT!" in my surprise. Husband and kids rushed up to help me set things right, and check my wrist. Afterwards, my youngest imp laughed at me..."Mum you said shhhhiiitttt....Holy shit, holy shit, holyshitholyshhhhitttt..." Oy. The next few days, he managed to inject the "sh" word into as many different phrases as possible, and when Dad finally put his foot down and said NO MORE...son said "Aw, but Dad, I've thought of so many uses for it!" I thought about it, and yep. He'd used it as a noun, a verb, an adjective, an adverb. We've been learning the parts of speech lately. Now, the question is, where can I find another word to teach him that's as useful as 'shit'?

Distressed...

...at the news of another murder of an autistic child. I don't know very much about this one, there is so much information about the father and nothing at all about the events surrounding the murder or the child himself. It's just so sad and depressing.

...at the news that ANOTHER big company, this time Kellogg’s, has bought into the Autism Speaks ridiculousness. Thanks to Autism Diva for alerting us http://autismdiva.blogspot.com/2006/07/snap-crackle-and-pop-are-just-trying.html . I'm going to write a letter, and no, I'm not going to buy Kellogg’s for awhile, just to soothe my own nerves on the subject. I'd like to know more about the group AD mentioned, the Autistic Social Action Committee--I hope they're calling for boycotting companies that support Autism Speaks and their ilk. I would feel so much better about all this lack of attention to the people they claim to support if there were some way to effectively protest. Seems the only place to really make an impact on people like that, is to get them in the pocket book.

And finally, I feel...

Hopeful...

...because there has been so much support for this petition http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php . I hope so much this will make a difference...I hope this will help stop the overwhelming tide of misinformation about autism. I hope for a better future for our children, where their strengths are acknowledged and nutured, and their difficulties given REAL attention and support, and the fairytale(cure with quack therapy)/horror story(autism as tragedy) stuff will end once and for all. If you haven't seen the petition, please read it. If you agree, please sign it. Lets give Autism Speaks a loud and clear message--if they want to speak for us, they need to speak for us ALL, and they need to speak the TRUTH.

Sunday, July 16, 2006

Don't Tell Me What I Want, What I Really, Really Want

Is it now necessary for me to say I’ve never, not for one second, either idly or in frustration, wanted to kill my child?

I never thought I’d have to make a statement like that, but just to inform those who listen to Autism Speaks, just in case they’re come away with the impression that parent of autistic child= longing to murder that child, I guess I’d better step right up and set the record straight.

Just in case.

I read this recent article http://www.alternet.org/wiretap/38631/ and the comments by “Autism Everyday” video producer Lauren Thierry with such a feeling of disgust and anger I actually felt nauseated. I was going to write to have my say about the ‘autism parent’/’dreaming of murder thing’, and the gall of this organisation that--on the one hand claims to speak for all of us, parents and autistics alike--and all the while drags us through the mud to further their own agenda. But I’m just sick of it, and there is no way I can say these things better (or more rationally) than those who have said them before me. Please read:

http://momnos.blogspot.com/2006/07/alternate-view-of-autism-every-day.html
http://www.kevinleitch.co.uk/wp/index.php?p=396
http://www.autismvox.com/karen-mccarron-alison-tepper-singer-and-misplaced-compassion/
http://ballastexistenz.autistics.org/?p=159
http://autisticbfh.blogspot.com/2006/07/sick-sick-sick-sick.html

But I have to say, concerning this statement in the article:

“The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. "I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools." It was only because of her other child, she said, that she didn't do it.

Both autistic and typical families have reacted with outrage and disgust to Singer's statement -- calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron.”

The point I want to make is this: yes, that statement made in the video was despicable. But I think that claiming that was the worst thing about the video is not at all correct. Bad enough that Tepper-Singer made that statement, but SO MUCH WORSE to repeatedly imply or even say outright it stands for us ALL. It is the overall disservice that video and Autism Speaks in general have done our community and the individuals in it that is MOST wrong, not simply that one statement.

Autism Speaks claims to speak for us ALL, and yet they consistently sell us short and imply we are less than we really are. Why? To illicit pity from sponsors, to galvanize support for their organisation and ultimately to add money to their coffers funding research that suits their own agenda.

They claim they know what we want.

Well, I think I know what THEY want.

And I think it’s time they stop selling us all short to get it.



Friday, July 07, 2006

Protest Against Prenatal Testing

I'm sure over the past few years many of us have worried about the idea prenatal tests for autism, but for me at least, the concept seemed something that could only happen in the remote future...something to be concerned about, but hopefully would never come to fruition.

Well, the days of hoping this would never become fact, it seems, are coming to an end. There are already reports of prenatal tests for autism, and though they seem to be rather inaccurate at the moment, I'm sure it's only a matter of time before they're 'improved'. It looks like we're one step closer to the day when, as is stated with a look of longing by a mother on the "Autism Everyday" video, "I know that science is making great breakthroughs, and my hope is that by the time (her non-autistic child) is ready to have a baby we'll have a cure or we'll understand how to prevent autism."

A couple of years ago, my son and I travelled far from home to visit a medical specialist we don't have access to in our area. We spent a few days at a Ronald McDonald house while there (a really positive move, by the way--if you're ever in a similar situation, I highly recommend trying 'the house'), and while there we became acquainted with a young father and his son. The little boy, 6 at the time, had Downs syndrome, autism, and a heart condition. I was so impressed with this dad as we chatted about our kids. He was so obviously in love with his little boy, so matter of fact about his difficulties, and so very proud of his accomplishments. When I (panicky, overprotective mum that I am) saw his little boy was having a hard time getting down from the tall rocking horse that my own son couldn't dismount alone, I rushed over to give him a hand. The little boy put his hands out at me (Stop! I can do it myself!), pushed himself back over the rear of the horse, and slid down the back supports, wrapping his little feet monkey wise over the wood for grip.

I laughed to his dad--he's so independent! And look how well he communicated his intentions to me so clearly. The father, quietly proud, told me how he and his son often went out to climb rocks on a mountain close to their home; that his little boy loved climbing on things above anything else. And, yes, though mostly non-verbal, his son was learning sign well, and was able to combine that with his words to get most of his needs met easily. I was impressed with the down to earth attitude of this father, his willingness to accept his child’s differences, and look for strengths in areas others might have missed.

We talked for awhile, killing time while the children tore through the playroom toys and awaiting our appointments. What stands out in my mind about that conversation was the process of acceptance he went through in dealing with each of his son's difficulties--Downs syndrome, he said, was obvious at birth with his son, so it was fairly easy to come to terms with that. As he grew and autism became evident, that again, was difficult at first, but you learn about it, adjust and move on. The one thing, he said, with great emphasis, the ONE THING he found really hard to deal with was the heart condition. He said simply "We love him so much, we want to make sure he's with us as long as is humanly possible."

Just before it was time to go to our 'big appointment' with the specialist, I was feeding my son in the kitchen, and at the next table, this father sat and talked with another family. I zoned out most of the conversation, but at one point, I heard one of the women say to this father "There's a prenatal test for Downs syndrome now, did it miss your son's condition?" And the father answered "No, my wife didn't have it done." This caught my attention, and I glanced over in time to see the woman draw back...

"What? That's terrible, why didn't the doctor offer the test? Everyone has them done now! You could sue him for malpractice!"

And I groaned inside. She probably didn't realise how horrible that statement was, or where this was leading...and I felt my heart sinking, thinking how the father must be feeling.

"No, my wife and I discussed it before hand, and knew there was no point in having the test in the first place. If there were a positive result we would have had him anyway...and I'm not a bit sorry! He’s a beautiful kid." he said…amazingly calm and gentle.

Hearing the mother scramble to save face, I looked over to see if he was ok, or needed help…and he gave me the most beautiful, wry smile from across the room.

I wonder how often he'd had to field that particular question. Was this something he'd experienced so many times he had the answer down pat? Did he know how to put someone back in their place gently from experience? I don't know, we only had time for a brief goodbye, and when we came back from our appointment they had gone-- off to start a cross country tour with his wife and son, career on hold, with money saved for their adventure of a life time. I hope it was a beautiful vacation for them, and somehow, I'm sure it was. Some people are so down to earth they seem to just know how to treat life as an adventure, keeping their footing in most all circumstances.

So.

There will probably be a time in the not so distant future when we autism parents might very well be called to answer that same question this father did. The question that implies no one in their right mind would have an 'abnormal' child if there were a choice. The question that implies...your child, not 'typical', isn't wanted by society and shouldn't be here. There is a prevention, why didn’t you use it? If your child is born autistic, it must have been a mistake with the test, or the doctor messed up…you couldn’t possibly have chosen this!

This is a question I’m sure many parents of Down’s syndrome children have to live with, and the implications that come along with it. In a time when 80% of foetus’s tested positive for Downs are aborted, when there are increasingly few Downs individuals, and those that make it through that ethical dilemma to birth have to deal with the knowledge that most of their kind are now so devalued they are aborted without thought or concern--how hurtful this question must be.

It seems our scientific knowledge continually progresses too fast for our ethics to keep up. I wish there were more outcry against prenatal testing, not just in terms of testing for autism, but for other differences and disabilities as well. I'm sure most Downs syndrome people and their families would agree.