Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘stigma

An Ongoing Dialogue

with 11 comments

I struggled to keep up with the flow of conversation.  Everything was moving too fast for me to understand.  I longed for those nonverbal cues I instinctively pick up on.  When is it my turn to say something?  Do I introduce myself, or should someone else do that?  Do I direct my conversation at one person, or talk to the whole room, at anyone who will listen?  The buzz of conversation was going on around me, and I needed to take part in it, but I was thrown by how alien it seemed to me.  Too frenzied, with constant repetitions, butting in where I thought I would interject.  A whole new way of framing questions.  Some people were conversing before I got there, was it acceptable to put my words across?  What do I even talk about?  When I figured out something too say, it was too long, and the words could not come out.  Symbols to decipher that everyone else had already figured out.  I was confused.  I didn’t know the rules.   Where are the rules written down that everyone else seems to get?  It was too hard, on top of a long day.  My brain is just not wired for this, I thought.

Despite my utter conviction to shout out, my first few minutes co-moderating for The Coffee Klatch‘s 24 hour event were all too silent.  I’d meant to go to a “Tweet Room” before the event, but life just got too busy.  I tried several times during the day to show my support, but with Pudding home from school, and Cubby ill, there was just no time yesterday.  Finally in frustration I tweeted that my autism parenting was getting in the way of my Autism Shout Out.  There was no let up for the rest of the day, finally Spectrummy Daddy came home, we ate, and it was time.  No preparation, no time to figure things out.

Then I thought about my Pudding, how she must feel like this all the time.  How she keeps struggling in the face of all her challenges, but she does it anyway.  I took a deep breath, expressed some not-so-meaningful thoughts, and tried to include people in the conversation.  Or conversations.  I don’t know, like I said, I was confused.  I’m not cut out to be a Twitter chat room moderator, that is for sure.  But then again, a few months I didn’t think I was cut out to be a blogger.  And just over a year ago, I really didn’t think I was cut out to be an autism mother.  Sometimes you just have to do things anyway.  Kudos to the gang at The Coffee Klatch who make this look so easy.  I have a deep appreciation for all who brought about yesterday’s amazing event, it was incredible.  Well done everybody!

I’m still in awe of the incredible feeling of support and solidarity amongst strangers.  You can never underestimate the feeling of being amongst those who get it.  I’m humbled by the efforts of adults on the spectrum to ensure that my children have an easier passage through life.  I’m inspired by parents who encourage me to keep going through the difficult times.  When our community comes together, it is worth shouting about.  I lost my voice for a while after Pudding’s diagnosis.  At times I was silent when I should have spoken out.  I’ll make every effort to be part of this ongoing dialogue, even if I can’t always figure out how best to do that.  Though the day is over, some people are just starting to talk, others only beginning to listen.  We’ll have to keep talking until we have understanding and acceptance, and those who need to break the silence know who they can talk to.

Enough of the silence of shame and stigma.  I’m talking about my children, and this wonderful community we all belong to.  I just feel honored to be part of this conversation.

Written by Spectrummy Mummy

November 2, 2010 at 2:49 pm

Coming Out

with 10 comments

I once had a conversation with a friend, who is gay, about Coming Out.  He explained that coming out is a big deal, you build up to it, it takes all your nerve, you finally do it and feel an enormous sense of relief.  Then it dawns on  you that you just came out to a few people, and there are about 6 billion more on this planet.  You have to keep doing it, over and over again every time you meet someone new.  And every time you worry about how they are going to deal with this information.  How will it change they way you are perceived?  Are they even worth sharing this personal information with?

Almost exactly a year ago, we started to notice Pudding’s differences.  We were scared and confused; overwhelmed by the A-word.  We had to acknowledge that our visions of her future did not belong to her, and it was okay to let go of them.  She was the same little girl she always had been; that is to say, a little different.  Still, it was hard to tell friends and family.  We knew our parents would feel that same fear for her future. We hated that awkward silence when we told friends.  It gets easier, though, and the more we feel comfortable about talking, the more questions people are asking.  Questions are easier to deal with than silence.  Questions lead to understanding.  Silence leads to shame.

There is another way.  Pudding’s disability is invisible.  We could keep quiet, hide her secret.  Unfortunately, secrets imply shame, and shame leads to stigma.  We don’t ever want her to feel ashamed about who she is.  We want to take these diagnostic words and demystify them.  To learn about the community of “Aspies” and “Auties” who not only aren’t ashamed of who they are, but take pride in their differences, and their contributions to this world.  We are determined that Pudding and Cubby will grow up taking pride in who they are, whoever they turn out to be.  It will be difficult.  As they get older they may not choose to be open, and that will be their choice.  It is our job to make sure they feel confident and strong enough to make that choice.

I’m thinking about this because on Friday Pudding will have a play date with a new friend.  I’ve been corresponding with the mother over email, but I haven’t mentioned that Pudding has autism.  Do I let her know before we meet so that she is prepared?  Or do I let her and her daughter meet Pudding first, so they can see there is more to her than a diagnosis?  I’m not sure what to do.  Even spectrummy mummies don’t know everything!  Suggestions in the comments please.

Written by Spectrummy Mummy

July 27, 2010 at 7:08 am

Thinking about the unthinkable

with 3 comments

Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week.  Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge.  Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.

Written by Spectrummy Mummy

July 23, 2010 at 9:14 am

Posted in autism

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