Wednesday, 20 February 2008

Clear Blue Water Update


Karen Montague-Reyes who writes the Clear Blue Water comic strip has written a comment on the post i did which i think you will be interested to read.

I am the creator of the comic strip Clear Blue Water. I was referred here by someone, and I'm glad I was. What an interesting discussion. This is the first discussion I've come across about this that has stayed civilized and that's both remarkable and refreshing.

Perhaps I wasn't clear in my response, but we do love and accept our son without question just the way he is. We appreciate his quirks, and find joy in his enthusiasm. If I could go back and choose to either have him or not, I'd choose to have him. But I would do things differently. I wouldn't vaccinate him. I would fight for early intervention therapies that I just didn't know about when he was small (we weren't on the internet, and no doctors mentioned them to us.) I would do these things so that he might be higher functioning. I would do these things to give him a better quality of life.

Perhaps I misspoke when I said he wasn't fine and had no quality of life. He is happy. He is loved. I don't want to get into specifics about my son's behavior, and without doing that it's very hard to explain what I mean. Let's just say that he will never experience living on his own. He will never have a job or have friends. He will never fall in love and get married. He will never have children. He will never understand where we went when my husband and I finally die. He will never know or care that he can't do any of those things, but I want them for him. I want them enough for both of us.

One thing this discussion has brought home to me is that I have a huge repsonsability with my comic strip. These recent strips were written over the Christmas holidays. My son had an extremely horrible Christmas break, and so did the rest of the family. I wrote these out of sadness and desperation. No they weren't supposed to be funny, I just wanted to show other families that they are not alone with their destructive, often difficult children. However, I have realized that the point I want to get across in my strip is one more of hope, than desperation, so I have pulled a strip from running and I am going to spend this week writing more positive strips about autism and about parenting Seth. They will not run until April, but I wanted to let you know that what you have written has resonated with me.

I have emailed Karen to thank her for taking on board all of your comments.

Respect to Karen for listening to us and changing her approach to her comic strip.

And thank you all for giving Karen some food for thought.

60 comments:

Tom Foolery said...

That was very uplifting to read Casdok. Thanks TFX

Chris H said...

My heart goes out to EVERY parent of a child with challenges in life, be they large or small challenges. Both of our grandchildren (who we are raising) have learning difficulties due to them being neglected and abused 'in utero'... it is heartbreaking to know they are stuggling.... what parents of Autistic children must go through is mind boggling to me.

frog ponds rock... said...

Now I have gone all teary..

cheers kim

Debs said...

That was very thought provoking.

Dx

motherx said...

That was very kind of her to take the trouble to write that. I understand totally everything that she has mentioned. It is very moving and when thinking about these things I still get really upset. It is living with a never ending pain and heartache. Even though I love my children no matter what they do, its the future I most worry about.

Elissa said...

Thanks to you Casdok, and to Karen, for being so honest and open in sharing your thoughts...
... and it's lovely to see that we can still be 'grown up' in addressing these things... a tribute to both you and Karen.
xx

I look forward to the new comic strips!

Maya M said...

I am sad that Karen thinks her son could have more typical development if she hadn't vaccinated him.

She's like the wind said...

I also thought that about the vaccination maya m!

Ashley's Mom said...

I am saddened by these comments Karen made:

"Let's just say that he will never experience living on his own. He will never have a job or have friends. He will never fall in love and get married. He will never have children. He will never understand where we went when my husband and I finally die."

And, honestly I don't understand. I am not asking her for an explanation, but as a parent of two children with very significant disabilities, I am not ready to use the word 'never' just yet. In fact, I am going to blog on the subject of 'never' later today. Come by for a visit, Casdok, and Karen also, if you're still reading comments.

Samantha said...

Very interesting to read, it's definately given me something to think about. Chubbs has dyspraxia (sp?) and he has been upset recently about how he will never enjoy or be able to do certain things due to the way his brain functions and certain things he does, for example, he can't cross the road by himself, I generally have to hold his hand. But I wouldn't change him for anything!

Sadie said...

Thank you both, Casdok and Karen, for such thought provoking reading over the past week. I think we have all dealt with the frustration and worry that Karen has felt and can understand where that thought process comes from. I'm very pleased that it has come to the conclusion that it has...and that such open communication without 'hate' is possible! Bless you both!!

Mima said...

It just shows what a wonderful group of blogging friends that you have built around you that such an interesting discussion could have even taken place without anything nasty breaking out. If I could I would break out in a round of applause not just for both you and Karen for your brilliant written words that so clearly communicated your points without venom, but also to all your commenters. The whole thread made for very interesting reading.

Honeysuckle said...

Y'know, I'm not sure about the comic strip format for this - it's hard to get subtleties of feeling across in a comic strip, like it sometimes is in a brief email. It's very easy to give the wrong impression, and for readers to make assumptions about tone of voice, attitude, etc (even with the drawings).
Maybe the subject matter just needs some other, more sophisticated, form of writing?

Vi said...

Well there you go Casdok, you spoke your mind, and made a change in someones life who'll change her work by your words and others.

And that's what it's all about!

PI said...

That's a great positive outcome. God bless you both.

Norah said...

Reading Karen's response, I can say there are things that I do not agree with. I am, though, surprised(it is sad that it surprises me) to see that she followed the discussion and cared about what was said, actually thought it over because of the discussion. A lot of people wouldn't have done that.

MMC said...

The fact that a civillized discucsion (as opposed to the ranting and raving you too often see in cyberspace when people disagree) occurred is equally imporant as what your discussion opened Karen's mind to. In fact, I am sure it wouldn't have happened at all without the tone of the discussion being as it was because people quite simply can't "hear" through all that crap. So you have done well, casdock, as have your commenters and Karen. I sit here very impressed with you all. In other words, kudos to you all!

misha_k said...

I just caught up with this and I have to say it's nice to see such a civilized conversation going on in the previous post. Much better than the vitriol that gets spewed around.

I think it's wonderful that Karen has taken in what everybody has said and now plans on writing more positive strips about autism.

Odat said...

One person at a time...changing the world! Wow.
Peace

Moondreamer said...

Wonderful, thought-provoking blogging as ever, Casdok!

All respect to you and your readers for a fab discussion. And to Karen, too, for providing such an honest perspective on her life, and for listening to the views of others with such an open spirit.

Just popping by to let you know it's not only a full moon tonight, but an eclipse! And visible in this country too, if the skies are clear enough, though very late ... it will be mid-eclipse at 3am.

:o)

Billy said...

How wonderful that she took the time to respond and mull these ideas over!

Niksmom said...

Thank you Casdok AND Karen. The need for ongoing, civil, open-minded dialogue is so vital to all people dealing with the myriad facets of autism. When we keep it on the level of respectful communication, so much can happen. Hope can be found, closure can be had, realizations arrived at, and lives transformed.

Maddy said...

That's just great. It's the continued dialogue that we all need.
Best wishes

Tanya Brown said...

Actually, I'd like to write Karen myself to offer a big (non-creepy, albeit from a stranger) hug.

Some have commented that a comic strip may not be the best way to convey her particular message. My guess is that she draws comics because they're her personal art form, or one of them. What she writes and draws on any given day is just that. She can try to temper it a bit, but in the end it's going to be a function of what she's been feeling and experiencing. I suppose she could simply keep the strips to herself and stuff them in a drawer, but I'm glad she hasn't. (Bruce Tinsley, though ... I wish he'd take his nasty, hateful little Mallard Fillmore strip, fold it up into sharp pointy corners, and shove it in a very uncomfortable place.)

I've appreciated her strip. As with anything else, there are going to be days when it strikes a chord and days when it doesn't, but above and beyond everything, she's done a great job of conveying the fact that they're a family. Autism doesn't change that; it just adds challenges.

She also helped me, personally, feel less lonely while my husband and I went through some challenging events, events which got me roundly ridiculed (and publicly betrayed and humiliated) by my side of the family. She makes me think and often makes me smile, which is no small thing.

Mrs. C said...

*sniff*

I'd have done about everything differently as well. But I have to tell you... I went on to have another autistic child when I was aware of symptoms and therapies. I will say that I truly believe that children #3 and 4 would have more severe problems were it not for early intervention and ABA therapies. But they still have some quirks.

Boy #5 is now flapping his hands and not talking. I'm crying on a regular basis about it.

Honestly, though, I would never ask God for a do-over with different children or none at all. I might ask Him for a do-better with the same precious little ones, though, if I only could...

*sniff, sniff*

This blog is important to me because there are other people out there who really understand. That we're all able for the most part to be civil to one another despite our perspectives is very refreshing as well. God bless you all.

Patti said...

Good to read that Karen will be doing more positive strips about autism. This was thought-provoking, Casdok, as always.

:-)

Omega Mum said...

Good for you. And for her, too.

Crystal Jigsaw said...

So blogging does work occasionally then. Good on Karen but thank you to you Casdok, for bringing this to our attention and raising another very important issue concerning autism and its complexities.

Best wishes, Crystal xx

whimsicalnbrainpan said...

"And thank you all for giving Karen some food for thought."

You cooked the dinner.

Emily, as some know me said...

Wow, that was amazing. Well done all around.

FXSmom said...

Interesting response

Suzy said...

So glad that Karen took the time to respond. She is struggling as everyone else is doing the best for her child.

And thank you Casdok, for allowing the dialogue to take place in an environment that is safe and wonderful.

Love to you and C.

Suzy

Odat said...

http://abcnews.go.com/Health/story?id=4320297&page=1

I saw this on tonite's news...thought you may be interested....

Peace

Jim said...

We have a wonderful group of bloggers no matter what disabilities we are facing. We do have one thing in common and that is "disability" that we all came to understand in our lives.

Jim

Jocelyn said...

That is a phenomenal response--and, yes, you started it.

dykewife said...

awesome! it just goes to show that no matter the medium, we all affect each other each time we reach out.

Angela said...

That is great that you were able to make a difference

Mary P Jones (MPJ) said...

Thanks again, Casdok, for bringing this comic to all of our attention and starting such a great dialog -- and thanks, Karen, for your thoughtful and considered responses. However we all may differ in our opinions on autism and its causes, we all love our children.

Get Off My Lawn! said...

Only with complex support networks are people able to be effective and positive in their lives. Bless you, you've done that for her on some level.

Joy said...

I can relate to all of Karen's thoughts. I'm glad there is a thought provoking conversation going on instead of a bickering fight. It's refreshing. Lovely that she's taking into account everyones thoughts and ideas.

Chris H said...

ME NICE!!! Like hell I am! OK ok, maybe just a little!

captain corky said...

I'm happy that people have a place where they can come and share in a comfortable and warm place, Casdok.

akakarma said...

I breeze by every once inawhile. I have an 8 year old with Down Syndrome and love your blog. It is so completely human and compassionate. It saddens me when people are judgemental of each others process. Who's to say which is the correct way to deal with having a child with overt difference- I say overt because all children are unique/different- some more apparently or dramatically than others. Black humor is a perfectly legit way of coping and expression. This is a great conversation to have. I find that the most defensive folks are those who are often reacting to their own process with shame. There is no shame to being sad, there is no shame in relief that one's child is less distressed than another, there is no shame in grief over anything- even if it seems trivial to another. I love my child just as she is- she is unique and beautiful and has nothing to hide- I would only change the stress she will endure, but what parent doesn't feel that way, even over things like acne!!Life is very hard isn't it- but worthwhile. Sorry to go on....

buffalodickdy said...

Always a good feeling when what you say or do can make a difference!

mayfly said...

A very nice post about. I came here from the "Clear Blue Water" discussion at CASDOK's blog.
There are three paths autistic children take in their mental development. Asperger's children pretty well parallel those of their NT peers. High-functioniing children develop slow for the first years of their life, and then jump on to the Asperger's path as their language skills improve. Low- functioning children progress very slowly throughout their lives and indeed are the most likely to regress,

My daughter has no physical impairments. She is happy. We celebrate her accomplishments even when they are fleeting, perhaps never to be seen again for months if ever. Studies of children like my daughter, with severe mental delays, indicate that Karen's pessimistic view of the future is by far the most likely. Especially for children who are both delayed and apathetic.

We, my wife and I, see ASD children younger than her, with parents describing the same symptoms we saw as they age make a great leap in their abilities leaving our daughter far behind. We are happy for them, but it reminds us of how slow our daughters mental progress has been.

She has made tremendous progress behaviorally. At one time she seemed to be nothing but tooth, tush, ands claw. I firmly believe we face far fewer behavioral issues than many people on these lists, or perhaps we think that because those behaviors have improved so very much.
In our day to day life, we feel ever so blessed to have a loving, smiling child.

I wouldn't give her up for anything. Our loving her has been returned in abundance There was a time, a very long time.when I was unsure she would ever be able to return my love. I am by nature extremely selfish in relationships, she has taught me so much about what love truly is.

We know it's about time to set up the special needs trust. We wonder who we should aks to be her custodian. We expect, when she is 18 will need to declare he incompetent, These are not happy thoughts, and I am deeply saddened to write about them.

So we live for today. Those things mentioned above are years away. When I get home, she'll lead me to the sofa, press on my shoulders to tell me she wants me to sit down and then climb on my back for the first of many piggy-back rides this evening. I'll see her gleaming smile reflected in the sliding glass door. I am home, and all is right with the world.

I too am pleased and yes amazed with the civility on this forum.

WesterWitch/Headmistress said...

Well done to both of you for being able to discuss this and change things without it becoming abusive and to everyone else who joined in - I am only just catching up.

Missed you on the I have blogged page of Purplecoo . . so came rushing over to make sure you are ok as you are usually first on our page.

Maggie May said...

Well done Karen & Casdok for a very human & sensitive subject, discussed in a very civilized way.
If the cartoon strips are her particular way of creatively putting her feelings down, then that is acceptable, isn't it?

deb said...

I know I've had many of the same thoughts and concerns as Karen has had. Raising a disabled child is like raising any child, there are dreams, disappointments and then acceptance, hopefully. It just takes longer. This is one of my posts on Katie's future.

http://tiredmummy.blogspot.com/2007/10/hope.html

Angie said...

Wonderful things can happen when people are respectful and thoughtful with one another. This is wonderful.

LceeL said...

I have read "Clear Blue Water" for a long time. Now I know why I like it as much as I do.

Pig in the Kitchen said...

every time i come to your blog I'm reminded of how piddly my concerns about life are. It's a very humbling experience.
Pigx

Tom Foolery said...

Heart to heart, Groovy Kind of Love. A click away. Cryptic or what? TFX

laughingwolf said...

kudos to all, and karen included!

[back from the funeral, all went well]

Preposterous Ponderings said...

That is awesome! You so rock girlfriend!

Kelley said...

I wrote a long winded comment and deleted it. :)

This is probably the most civilized Autism conversation I have ever seen.

A breath of fresh air.

DJ Kirkby said...

Thanks to Karen for being such a remarkable person from someone with Aspergers, she had my respect before and even more so now.

titration said...

That is so powerful... The conversation in general, a gift.

Eileen said...

WOW, that is amazing. She seems like a really good person. Thank you for starting the conversation. It is nice to be heard.
XOXO

Marla said...

That is amazing. I am totally impressed. It is all a process of learning and changing our outlook. The way you two have communicated through this is exceptional and inspiring.

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