Finding Ourselves on the Autism Spectrum

Posts tagged ‘helping’

Helping each other

A few months ago I was at a local support group meeting for parents of kids with Asperger’s Syndrome. It was started by a couple friends of mine with kids on the spectrum, and we’ve been meeting about once a month. One of my friend’s daughters agreed to come and speak to the group to share her thoughts and experiences as a young woman with Asperger’s. I was impressed with how well-spoken she was and with her bravery in being willing to speak with the group. It made me realize that someone being poised and articulate and performing well in school didn’t necessarily eliminate the possibility of that person being on the spectrum, and that led to more exploring of my own life experiences. Starting out on that path has led me to meeting many wonderful people who have helped me to understand that I am not alone and that who I am is really OK.

Soon after reaching the conclusion that I was probably an Aspie myself, I was presented with the opportunity to help this young woman in exploring her own life. She had decided to write a research paper about having Asperger’s Syndrome, which was a huge step for her, and I was asked if I would agree to be interviewed as an older woman who was self-diagnosed. In typical Aspie form, and because of difficulty arranging both our busy schedules, we handled the interview by exchanging emails rather than in person. It was an interesting experience for me and served to reinforce my realization that I’ve spent my whole life using my mind to figure out strategies for coping with situations that didn’t feel natural to me.

This week we had another support group meeting, and my friend read the very eloquent conclusion to her daughter’s 25-page paper, in which she had expressed how much better she was feeling about herself and her future after having worked on this paper. I asked my friend for permission to share the email she sent to me after the meeting and offered to change their names to initials to protect their privacy:

“Hi Diane,

You have no idea how much hope you have given me for L by revealing your suspicions about having Asperger’s. When you first emailed me and said you think you have it – I thought no – you’re outgoing and friendly and socially appropriate and a great mom… you don’t appear to be on the spectrum. But after reading articles about girls and Asperger’s, well, it’s very different than for boys. Girls can hide it so much better or like L says – “fake being normal.” The more I learn about it, the more I see it in two of my sisters and my mom and my grandma.

Your advice to L not only helped her to write a great paper, but also to learn how to tackle her own personal issues. She has used your “cognitive therapy” approach to talk herself down when she is anxious and she says it helps. Knowing how well you have turned out – you have given me hope that L WILL eventually drive, she WILL go to college, she WILL get a job, get married and hopefully be a mom, too. So thank you for trusting me enough to share this information about yourself.

p.s. I liked our quiet little meeting where it was just the three of us!

p.p.s. L is gone for a whole weekend on a Youth Group Retreat and I didn’t have to force her to go. 🙂

Take care,

B”

This absolutely made my day, and I wanted to share J We really can make a difference in each other’s lives.

 

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The next step

Over the years I’ve let go of a lot of my attachment to goals and deadlines.  We get to things when we’re ready, and we don’t always get to decide when that will be.  Sometimes we don’t seem to be moving forward much at all.  Sometimes we lose some ground, but we try to remember that the overall trend is upward.  It’s just not a straight line.

Today has been a decent day so far.  Middle son came back from a sleepover  and has been enjoying his new Rockband for the Xbox.  He’s the only one of the three to take much interest in music so far.  My youngest had a playdate at a friend’s house and put a lot of effort into trying to clear a light layer of snow off the driveway to impress his dad before he got home.

My oldest has been a bit stressed today.  Nothing along the lines of a full blown crisis. At least not right now.  You never know what the day may bring.  But he woke up restless and not happy about the homework still remaining to be done before tomorrow, and he had it in his mind to escape his worries for a while by attending a local weekly Yugioh tournament.  He never does as well as he thinks he will at these things, but he gets a bit better each time, and he no longer falls completely apart in frustration.  So if we have time, as we did today, it’s nice to indulge him.

He did good by finding the website of the place where they listed the time of the tournament.  Then his dad asked him to call the place and confirm that it was actually happening today.  Not strictly necessary, but a good way to get useful information about any last minute changes.  And not a big deal for some people.  But my guy?  Hmmm.  Phone call.  Yeah, he wasn’t exactly comfortable with that.

This is the part where I have to figure out what he can actually manage today, because often he doesn’t know himself.  It doesn’t always work trying to base it on what he’s done in the past.  Since puberty hit, he manages some things a lot better, and some things have gotten more difficult.  He can stay in the classroom during every period on a pretty regular basis now and consistently participates, and he doesn’t refuse to do his assnments.  He can attend after school clubs in his areas of interest on his own. That’s all tremendous progress. At the same time, inviting a friend over happens much less frequently and only when we have just the right combination of mood and circumstances.  And he does NOT want to do phone calls. 

There was a period of time when I just would have pushed.  We’ve done a lot of pushing over the years, and it’s mostly turned out to be for the best.  He’s all about inertia and getting started, and once he gets past that, he’s usually fine.  It’s exhausting, but it’s worked.  But as he’s gotten older, sometimes the pushing just makes things worse.  Also, this kid is 15 and over 6 feet tall now, and I don’t look all that intimidating anymore, if I ever did.  He finally has some investment in wanting to accomplish things himself, though, and the best situation is when I can appeal to that.  But sometimes, he’s just not up for something, and it’s not a big enough deal to make into a Thing.

So here’s what I’ve been trying lately – with him, with the other kids, and with other situations that I need to address in my day.  I just ask myself, what’s the next step that we can handle?  What’s something to get us moving in a positive direction, if only moving slightly?  If he can’t manage the talking, can he look up the phone number? Can he dial? Can he sit next to me and listen to both sides of the conversation to get a feel for how that goes and what words get used?  Rather than bailing on the whole thing or handling it all for him, how can we help him move forward even just al little?  And often, once the pressure of having to do the whole thing is removed – because the anxiety that accompanies his autism is more debilitating than any other aspect of this condition for him – he finds he can do more than he thought he could.  And then he gets to feel like he accomplished something.

So he did everything up to sitting with me to make the call, and then they didn’t pick up at the other end. We  decided it was probably fine, anyway, and made preparations for him to go.  He handled his dad leaving him there on his own, us missing his initial phone call home, losing all his matches (including one to a little kid which produced a brief period of understandable swearing back in the car), and now he’s moving forward on his homework.  There’s nothing remarkable about the day, but we helped our boy get past being stuck, and he is handling his frustration without it overwhelming him, and to us that makes it a Good Day.

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