Thursday, February 14, 2008

"Too open" about it...

I wonder how many of us have heard this, from well-meaning people... I heard it yesterday & I'm still trying to process my feelings.

I was talking to a friend about a recently-met other person, and my feeling that this person seemed to have difficulty, at times, finding things to say to me. My friend's response was that perhaps I'm too open about having an autistic child- implying that it puts people off. That this is what would make it hard for someone to find things to say to me.

I have gone round & round in my head- & out loud to Charlie- for a long time, about how to speak of autism & how it affects me & my family. I certainly don't want to be obnoxious, single-mindedly harping on the topic night & day- that just turns people off. I do my best to speak positively & respectfully about my son & my whole family, to retain our human dignity. Having been disabled in the past, I know that people prefer not to hear about difficult things. They are uncomfortable, they don't want to to have uncomfortable things brought to their attention. It's so much easier if we just stay invisible... I have tried being invisible- which is easier on some levels, but feels very much like pretending, like faking. I have tried saying as little as possible- waiting, say, until Brendan does something obviously "different" in public, & then being open to answering questions (as if anyone's brave enough to ask...). These approaches meet the needs of our society, to some extent, but they certainly don't meet the needs of my kid or my family! It just feeds the dominant paradigm of ignorance & cruelty by acting as if there's nothing different about my child or my family. It doesn't prepare society to meet us or accept us.

So, I talk openly about my autistic son & about being an autism family. I'm as proud of him & his accomplishments as any mom, & I don't see any of it as being "in spite of" his autism- sometimes, what makes me proud of him is a result of his autism, a result of who he uniquely is. Our family is different than many, too, & I think it's important to let others know about our journey. If I don't talk about us, how will anyone know that they know a family that lives with autism? How will they know that it's not just something that happens to other people? How will they learn our truth about autism- that it's possible to live with it & love someone with it & be proud of that person- & understand that there isn't just one way to think or feel about autism? How can we change the world if we hide?

I believe that we are doing nothing less than changing the world, by being who we are, loving each other for who we are, & telling the world about it. I know that I risk seeming like a "Johnny one-note" when it comes to autism, but it feels terribly important to me to prepare the way for the rest of Brendan's life by talking about difficult things now. As an autism parent, I feel like I'm on the front lines of a desperately important issue- how society is going to make room for my son as he grows up.

So, in the face of feedback that perhaps I'm too open about having a child with autism, the whole of my being says, NO WAY! This is as much a part of me as my need to create- to knit & weave & dye beautiful colours. (I wonder if I'd ever be told I'm too open about these things...) My child & my family are at the centre, the heart of my life. I speak often & lovingly of them. To a select few I also speak of the more difficult things, because I need support, as any parent does. As Charlie has pointed out, we had friends evapourate in the aftermath of Brendan's diagnosis, people who couldn't wrap their heads & hearts around us as an autism family. But we have many more friends who have stuck with us, & who are living proof that our openness about how autism affects our lives does not have to be a turn-off.

I'm wondering how other families deal with this sort of feedback when they hear it. What do you say? How do you feel? Let me know, please! It would be a help & a comfort to know how you're facing this, too. Thanks, friends!!

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At 11:04 PM, Blogger kristina said...

I have definitely had this happen to me----someone will be talking about a child's latest report card and I'll mention Charlie's progress report (and why he does not get letter grades, in his case). Sometimes I wonder if people think autism is "depressing" and they think that they are doing me a favor by not talking about it! (Maybe doing themselves a favor instead.....)

I used to, I admit, be kind of defiant in talking about Charlie along with my "he has autism" phrase. Sometimes now I just join in the conversation about kids, family life, and bring up things with do, with a bit of twist since things are still a bit "different" (in a lovely way, as you note!) in Autismland.

At 2:09 AM, Anonymous mayfly said...

Having a social life with an autistic child can be difficult due to logistics. The pre-teen from down the street who minds the three-year old next door is not qualified to watch your child. We have been very lucky on that the church we attend has programs for autistic children. It is not a megachurch and we know each other well. This gives us a source for babysitters, although a major problem is that it's difficult to have them take any monetary reward for looking after our daughter. We provide dinner and such for them, but still, I'm hesitant to use them very often.

The other nice thing is that when we go to a get together at someone's home from the church, they already know our daughter. People help us out by keeping an eye on her making sure she's not pouring soda over a sofa or washing her hands after she's decided that the proper way to eat frosting is with her fingers. It also allows us to socialize,

I think it is wrong to love your child because they have autism. You need to love your child be they autistic or neuro-typical, sighted or blind, tall or short. blond or brunette, and so forth.

My daughter made my day. My wife had gone to my daughter's school to deliver valentine goodies for the children. I asked how K was doing in the class, and my wife said she was at a computer with another child taking turns. "What was she doing?" -- "Moving the mouser and clicking on things."
"You mean moving it wildly and clicking whenever she felt like it." -- "No moving a clicking with a purpose. The teacher says that K is doing better than they expected." I then turned to my daughter and told her how proud I was of her. A smile crept across her face. I don't really know if she understood or not,but it was so appropriate in both timing and character, that I have to think she did.

You can bet I'll be telling our friends about this.

At 7:40 AM, Blogger Sharon said...

Yes I've had similar comments, and like you I think NO WAY do I go on about this too often. I think what we say and how we act is important. I take my son out, and yes he does often act in ways that are unusual, and sometimes in ways that would be considered 'naughty' were he a typical 7 year old. Sometimes I explain, sometimes not, but I always try to model pride, understanding and love when we're together. I will never stop that, no matter that people get fed up listening or wish they didn't have to deal with us and our noise!

Your family is fantastic and anyone who knows you or engages with you is privileged.

At 8:57 AM, Anonymous Anonymous said...

Why would you call your family "an autism family?" By doing that aren't you defining your family by the disability? If your child had diabetes, would you call yourself a "diabetes family?"

At 11:50 AM, Blogger Lisa/Jedi said...

Thanks so much for the comments!

Kristina- I've felt defiant at times, too, mostly when there was the sense that we/Brendan were not welcome. When I look back on how attitudes have changed toward those who are visibly different, I feel comforted that there has been a change, but we still have a loooong way to go, don't we? Thanks so much for sharing your thoughts about this- they/you continue to be a great support :)

mayfly- we are also fortunate to have a small & mostly supportive church community that allows us to socialise & with folks who feel comfortable hanging out with Brendan. One of our main sitters is our younger goddaughter (who's off to college next year- eek!) & our other favourite sitter has been a young man with ASD who is also presently away at college. BTW- I speak of loving my son because of his autism as an antidote to those who love "in spite" of various things... I think it's much more positive to love my kid "for" something, but that doesn't mean that I tend to single out any one aspect of him to love :)

Sharon, the family journey that you share in your blog is a constant source of strength & support to me! Thanks for weighing-in with your own experiences with this...

Anonymous, I suppose that it all depends on whether or not you see autism fundamentally as a disability. We see it as a whole spectrum of things: some aspects requiring treatment, such as the splints he's going to need to support his hypotonic finger joints; some aspects requiring an IEP, such as the OCD & learning differences; some which wouldn't need support if society was more understanding/flexible; & some which are pure joy, such as his unique way of perceiving things. Brendan himself decided that he has "Autism Spectrum Difference" & he certainly doesn't define himself by his "disability", although he does refer to himself as autistic, or as an "Aspie" :) Part of the reason that we feel the need to identify ourselves as an autism family is that there is so little understanding of what autism is & how it makes ours lives different. As long as there's a need for advocacy, we'll define ourselves this way. The day we don't have to will be a great day indeed...

At 1:39 PM, Blogger Jannalou said...

I do understand this. At some point after my ADHD dx, I finally stopped worrying about what other people would think in response to me telling them my label. Now, if it comes up, I talk about it; otherwise, it's not a big deal.

Having an Aspie boyfriend is more interesting, especially as he sees me as being very Aspie myself. The two of us are quite the pair, with our varying AS and ADHD traits. And I think that's okay, regardless of what other people think.

Regardless of diagnosis or lack thereof, most of the issues we all face are the same. My boyfriend and I have communication problems, not just because of our AS & ADHD, but because of the fact that we are different people! Autistic people are simply a little different than most, and require different supports. (All people require supports, as Joel has blogged in the past. It's just that the non-disabled among us think that they don't actually need any.)

At 5:23 PM, Anonymous Anonymous said...

I think also if you have a lot of children, your family is really defined by a lot more variables. I picked up your blog very indirectly and it really had nothing to do with autism. I just like your writing, and your photos, and your story. All the best to you.

At 6:13 PM, Blogger mumkeepingsane said...

I have often found that people are uncomfortable when I mention autism. But, I dunno, for us it just 'is what it is'. I'm not going to NOT mention it if the conversation goes in that direction. I'm not going to hide it or deny it. I think it's important to show that an autism family (and I don't have a problem calling us that...autism is pretty all-encompassing in our life right now) can be a happy family. I want people to see the similarities and the differences and embrace and enjoy them.

I've lost friends over autism. I assume it's because they were uncomfortable with the whole situation. I was sad at the time and honestly angry because I really needed support. But now I feel badly for them because they don't have the joy of Patrick in their lives.

At 4:14 AM, Blogger Pweshes Mama said...

Wow! I'm so happy to have found this post along with the comments made.

I'm a newly diagnosed "autism" mama and lately I've been feeling slightly insecure as well about my "openness" in sharing stories of my son. Unfortunately, there are no words to describe the level of ignorance there is on autism in my country. That is why, through my blog I vowed to be a woman on a mission, to spread the importance of early intervention and also show all of the positive aspects of my son to help chip away all the negative perceptions people have of the condition.

On one hand, I am happy I have received much support from comments left on my blog. But yesterday, I was hit for the first time by a "psychologist" asking if I have thought of the repercussions of what I'm doing , in particular about disclosing my identity, as this may be "fatal" for my son's progress in the future. (??)

For the past weeks, even though I'm encouraged by the postive comments left on my blog, I have noticed that when I'm verbally telling others about my son being newly diagnosed (and even though I'm telling this with a giant smile and in a very positive manner), I am ALMOST ALWAYS received with either an uncomfortable silence or a quick brush off followed by an urgent need to change the subject. when these people are actually those I consider my close friends, I would constantly think about why they do this, especially since I really try to talk about it in a positive way.

So already feeling vulnerable by being treated like this, especially by my closest friends, getting provoked by that psychologist yesterday really made me question myself and my "opnness". I badly craved some kind of reassurance that it is OKAY to want to share my stories to others as a positive example, rather than hide my son or not talk about him which I think will only feed into the negative stereotype that exists already.

So thank you SO MUCH for your post. I nearly felt like giving up yesterday and shut up about autism altogether (which would probably mean stop talking to other people period)but after reading what you said, Ithought to hell with it! As long as I am conscious to not talk about ALL the time, I shouldn't be deterred to be doing what I'm doing. It is just too important! AND my son is just too precious to not be talked about!! Thanks again!!

At 8:37 PM, Blogger Lisa/Jedi said...

Thanks again for your comments & support, friends. Sorry it's taken me so long to respond... school break was last week & then this week we've been getting back to school...

Mama, thanks for weighing-in with your perspectives, too. This "psychologist" sounds like someone who could use some consciousness-raising, big time. Anyone who links the rest of any child's life to a particular parental behaviour (short of abuse...) is looking things rather narrowly, in my opinion. It's hard to be challenged on things that are so near & dear to us- makes us think (a good thing) & can sometimes make us wonder if we're doing the right thing by sharing our journeys, but we do need to remember that our guts are better guides than someone we've never even met...

At 3:37 PM, Blogger Karen said...

Thank you for raising this issue. My son was diagnosed just over a year ago and I have always been open and honest about his condition and its implications for us as a family. Generally I get a lot of positive feedback from strangers or new acquaintances when I tell them about his autism, or they ask some basic questions about cause/presentation/therapy/schooling etc. I honestly feel that it is my "duty" to educate them and help them (and therefore society) develop and understanding of the condition. I am open and honest about his autism with my friends, and have been very lucky that no one has been anything less than supportive. In fact, I have made a lot of new friends as a direct result of his diagnosis, women I would have never met any other way, with whom I share a deep and important connection.

But there are some things I find it hard to be honest about, and that's one of the reasons I've started my blog, so I can get those thoughts and feelings out there.

I love your writing and will be linking you in on my blog.

Thanks for sharing

At 3:25 PM, Blogger Cody said...

I certainly don't think you're too open about it. It is a large part of your life, and it's an issue that more people should be 1)aware of and 2)sympathetic towards. I'm always aggravated when I hear people say "I don't want to hear about that etc. etc.", and I know my life has been enriched by your families passion in face of some difficulties!


(PS I've been hoping to e-mail you, but can't find your address. Mine is unieuph at gmail dot com. I hope to hear from you!

At 10:59 PM, Anonymous babs m said...

I agree it's hard not to talk about it all the time. In fact I just wrote a post about it myself--we're all thinking on the same wavelength in Autieland... :) Best wishes for your family!

At 1:52 PM, Blogger Lisa/Jedi said...

Thanks, friends, for the continuing commentary... It's so helpful to read others' perspectives on this!

(Thanks for the holler Cody- good to hear from you, all the way across the biiiig puddle :)

At 3:47 PM, Blogger Terri said...

I also have a child with a disability and sometimes have received a similar response--I agree with you, we teach the world how to relate to us and to our children.

Most people do seem to learn from my examples, some folks just can't get past their discomfort. I always figure I have planted a seed that might bloom another day...

Keep sharing your positive, respectful attitude.

At 10:42 PM, Blogger Lisa/Jedi said...

Thanks for commenting Terri!


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