Finding Ourselves on the Autism Spectrum

Archive for January, 2011

My first ever award!

My first ever award!

Meme: A relatively newly coined term, identifies ideas or beliefs that are transmitted from one person or group of people to another. The name comes from an analogy: as genes transmit biological information, memes can be said to transmit idea and belief information. (From the Wikipedia entry)

This entry Wikipedia entry and much of this post has been copied from Rachel at  Journeys with Autism.  I figure it’s the least she can do after saddling  honoring me with this fine award 🙂  The award was originally created by Jillsmo over at Yeah. Good Times , who had this to say:

“I’ve created an award!! You know those blogger awards that go around the blogosphere, I’ve gotten a few before. It’s nice, to get these things, it means that somebody likes you and wants to spread your word. (That actually sounded kind of gross, “spread your word.” Please don’t spread my word, I like my word the way it should be, the way nature intended, in its original unspread state. But you know what I mean). So, I figured there aren’t enough of these things around, at least, I haven’t been given one for a few months, surely the blogosphere needs another one! (Is “blogosphere” the right word to be using here? It doesn’t look right to me.)

So, I present to you all: The Memetastic Award! Named as such because these things are memes and its purpose is solely to celebrate the memeness of the award giving process. Let’s rejoice in our memeocity by passing this award on to other people! It will be memelicious! Okay, mostly I just want to see what happens, and how far this thing goes. Wouldn’t it just be so cool if an actual meme was created from this? Not very likely, but a girl can dream, right? At this point I’m just hoping it makes it past my own blog.

Here are the rules:

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes (put it in your post, you don’t have to put it in your sidebar, I think that would seriously be asking too much). It’s so bad that not only did I use COMIC SANS, but there’s even a little fucking jumping, celebrating kitten down there at the bottom. It’s horrifying! But its presence in your award celebration is crucial to the memetastic process we’re creating here. If you need a higher resolution version… I totally have one!!

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some shit up, we’ll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we’re just on the honor system here. I trust you. Except for the 4 that you lied about, you lying bastards! But don’t go crazy trying to think of stuff, you’ll see by the example I’ve set below that we’re not really interested in quality here.

3. You must pass this award on to 5 bloggers that you either like or don’t like or don’t really have much of an opinion about. I don’t care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don’t really care.

4. If you fail to follow any of the above rules, I will fucking hunt your ass down and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don’t know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I’ll leave you alone. I’m serious. I’m going to do these things. Starting with the 5 of you I’m about to pass this award on to.

5. This one isn’t actually a rule, but once you do the above, please come back here and link up to the Memetastic Hop so that I can keep track of where this thing goes.”

Back to me:

I feel tremendously honored by my inclusion among the other fine recipients.   I feel absolutely comfortable making things up on the spur of the moment, and I have not been at all distracted by having three children fussing at each other continuously in the background while I type.  I have absolutely not thrown this together with undue haste in order to avoid obsessing about it over the entire weekend, and  the stuff I made up here is totally not stuff I’m remembering about old college roomates.

About me:

1. I am married to an identical twin.

2. I once participated in accusing Bruce Springsteen of being the father of my unborn child.

3. I speak fluent Italian.

4. Every guy I’ve ever dated has been over 6’2″.

5. I’ve read every book ever written by Agatha Christie.

And now, on to the latest new recipients.  The Memetastic Award goes to:

1. Alienhippy’s Blog
2. Mind Retrofit
3. Spectrummy Mummy’s Blog
4. Pancakes Gone Awry
5.  Welcome to the mad house
 My apologies Congratulations!  (If you have already received a similar award, please just accept this as a token of esteem from a relatively new admirer who’s just too busy to keep up.)

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Coming back into focus

I get overwhelmed a lot.  By events, personalities, sensory input, illness and injury, too many responsibilities, too little time  – even sometimes by a single thought that goes round and round in my head.  Mostly it’s the thinking that gets me.  When my head is in a good place, I cope with the other stuff. 

I’ve  tried to start several different posts since my husband’s truck accident.  I can’t seem to get my thoughts organized around any one topic.   We’re both functioning fine and grateful for how things turned out, but we’re also still processing some things, and for me that takes the form of having trouble concentrating.   That’s not a new experience for me, but trying to write and stay in touch with people when I’m feeling that way is new.  Isolating myself has always been much more my style.

Here’s a picture we took at the junkyard the day after the accident, btw :

The force of the impact was all on that driver’s side door.  Amazingly enough, my husband made it out of this with just a sore foot and one scratch on his head, neither of which is bothering him now.   And the other driver was fine and didn’t require a trip to the hospital, which is also a great blessing.

It could have been so much worse.  We got through the crisis of the day, and now we continue to manage any difficulties that arise as a result.  We continue to add little bits to the pile of stressors that’s been built up over the past few years, and we keep moving forward.  There’s a lot of stuff in that pile.  Deaths in the family, business difficulties, financial worries, his experience with cancer a couple years back (he’s all clear now), and all the stuff that falls under the heading of spectrum-related issues.  Some things are mostly difficult for a while, and some are always with us.  And every time it feels like it’s a bit too much to manage, something new gets piled on top.

I spent so much time early on in our marriage weathering problems big and small and waiting for things to get better.  I kept thinking we would get to some point where there would be a big light at the end of the tunnel, and we could breathe a sigh of relief.  I really thought we were there for a while when Simon was in kindergarten, verbal and bright and functioning reasonably well in the safe little world that existed there.  He had overcome so much.  Then came the next tunnel – first grade – which was much longer and darker than anything we had experienced before.  We’ve come through that, too.  And on to the next, and the one after that …

I had to switch metaphors somewhere along the line.  Now to me it’s more like riding waves.  When things are good, I enjoy the ride thoroughly and for as long as I can, because I know it’s only temporary.  The bad stuff is only temporary, too, which makes it easier to tolerate.   I think what maybe constitues my own version of a mid-life crisis is that somewhere in these past couple years I let go of that idea that someday everything will get better, and I think I’m still grieving a bit over that.  I’m not devastated, but it makes me sad.  Some things will get better.  Some will get worse.  It will all keep changing, and the only thing we can do is choose how we respond to each thing as it comes.   My parents are in their seventies and have a good life, but it isn’t anything you’d call better – it’s just different.  The problems are different, and the enjoyments are, too.  For better or for worse, I think I finally feel like a grown up. 

OK, that was kind of a depressing thought.  But now that it’s out there (instead of rattling around in my head), I don’t really feel terribly depressed.  I’ve been to this place in my mental processes before.  This is the point I have to reach just before I finally decide to take charge of my thinking.  Once I can see what’s going on, I get to choose where I go next, and that’s empowering. 

There’s some kind of story my mom got from her Alanon experience that I’m probably not going to get exactly right here, but I think it’s still worth sharing.  (I realize this is yet another metaphor, but that’s how my brain works, so please bare with me.)  It’ something along the lines of a person walking down a path and falling into a pit.  Eventually somebody comes by and helps them out.  I’ve heard different variations of the story.  Sometimes the person who falls in repeats the experience enough times that eventually they learn how to find their way back out on their own.  Sometimes the one who comes to help jumps down into the pit, too, which turns out to be OK, because that person has been there before and knows how to get back out.  Sometimes the person walking down the path has fallen down enough times that they remember and learn to avoid the pit altogether. 

(If I was being at all unclear here, the pit is supposed to be a metaphor for a negative behavior or way of thinking. 🙂 )

I’m not so good at avoiding the pit, although it happens every once in a while.   Mostly I’m better than I used to be at climbing back out on my own once I realize where I am, but that can sometimes take a long while, and the effort can be exhausting.   It just seems to work a whole lot better when there are people around to remind me that I don’t have to stay where I am if that’s not working for me.  It’s hard to reconcile that knowledge with my lifelong instinct to run and hide within myself whenever I feel stress, so I’m trying  a different approach. 

I’ve been catching up on reading some other blogs over the past couple days, and I’ve started Rudy Simone’s Aspergirls book, too.  Reading other’s thoughts and experiences helps me to remember that I’m not alone in mine.  And whether this post makes any sense to anyone else or not, writing this and other things I’ve shared with family and other friends over the past couple days is helping to bring things into focus for me.  Thanks for listening.  

 Aspie boy just finished his midterm exams and came home early, so he and I are enjoying some peace and quiet while we have the opportunity.   The kids are all off school tomorrow for a “records day”.  I finally feel clearer and ready to move forward instead of staying stuck.  That’s not a bad way to start into a long weekend .  🙂

Close call

So my husband tried to die today.  Just a few minutes after we had talked on the phone about me not going out because the weather was bad, I got a call from him saying he’d been in an accident.  He knew it was slippery and was doing his best to be careful merging onto the freeway, and he remembers losing control and sliding but not the impact or losing consciousness.  He’s OK, but it’s been a very intense day, and his truck that he’s had since before I met him is a goner. 
 
I spent a long while talking on the phone with a truly wonderful woman who had stopped after she saw the accident, and she stayed on with me letting me knowing absolutely everything that was going on while my husband was being helped by the paramedics, etc.  She said she’d been in a serious accident before herself.  The first paramedic to get to my husband was a dad he knows from Boy Scouts.  When my hubby was trying to be cheerful upon seeing him and couldn’t come up with the guy’s name, he (the paramedic) decided a trip to the hospital was in order. 
 
I had woken up at 5:00AM and had spent the morning starting at about 6:15 watching my friend’s kids so she could be with her husband while he had surgery for his badly broken wrist. I was already feeling the strain from dealing with one child getting a nerf dart power shot to the eye approximately two minutes after their arrival, another having a scrape and a wet sock from playing chase in my kitchen, Alvin leaving a paper at home and needing it to be brought to the middle school, a child needing to go back to her house to retrieve forgotten snow pants, and the spectrum kindergartener who stayed with me for three more hours after the others had left nearly locking me in my own basement.  It was about fifteen minutes after I had started to breathe that I got the call from my husband and had to start scrambling to come up with a plan not only for my children, but for my friend’s children, as well.
 
Fortunately she called shortly afterward to say she and her husband were on their way home, and he had received a nerve block and would be OK for a while.  I turned the tables and asked if she could pick up our two little ones that I was supposed to retrieve, then I got to call each school and explain to each child – or in one case, the teacher consultant – what was going on and what the plan was.  I left a key in a place we’ve used before for the older boys and gave them a cell phone to call me.  I looked up the hospital, which isn’t one we normally go to, on Google maps and came up with a way to get there without taking the freeway.  By then my friend was back, so I returned her key and headed off.  I was quite proud of myself for finding the place without a problem, and they had a greeter sort of person right at the emergency room entrance to help me find my way without any hassle.  Hubby had been checked out pretty well by the time I got everything else handled and made it to the hospital, so we didn’t have to stick around too long.  He’ll be sore, but he’s basically OK, which was nice to see after they did the whole neck brace and backboard and ambulance thing with him to be on the safe side.
 
Before we made it out of the hospital parking lot, I got a call from Simon informing me that a police officer had stopped by with a citation.  Nice they could get to that before my husband even left the hospital.  At least Simon handled it fine, although it freaked him out a bit.  He had just opened the door and started to wander away thinking it was just Alvin arriving home from school.
I’ll probably have more to say about this after I’ve had time to process it all a bit more.  For now we’re just tremendously grateful, and some other issues that have been bothering us have been placed into perspective.

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.

 

Coping with feelings

I read something at Alienhippy’s Blog towards the end of December, when I was brand new to the blog world, that really stuck with me: 

“I think that the lack of empathy thing is just a shut down mechanism of self protection because emotion is so intense …”  (You can find the rest of the post here http://alienhippy.wordpress.com/2010/12/29/toys-and-empathy/ .)

That was one of the first things I read that let me know I had come to the right place – someplace where another person had actually felt some of what I felt and understood.   Up until recently, that was a very rare experience for me.  I’ve had quite a few of these moments since then, and I am so grateful to have met so many wonderful new friends.

 In my “Figuring It Out” post I wrote about my difficulty in accepting negative feelings in my kids.  I had come to the conclusion that this had something to do with my feeling responsible for fixing things.  As the mom of a child on the spectrum, it always feels like I’m the one who has to handle a problem, because no one else seems to understand what to do.  So I’m constantly on my guard for things that look like problems, and I’m anxious because the truth is I don’t always know what to do.  I’m also afraid that if I don’t figure out what to do pretty quickly or if I get it wrong, the problem will get bigger, and everyone will suffer as a result.  Seeing that typed out makes it seem like an awful lot to ask of myself.  But it’s what I’ve been doing for all these years, and it gives me a sense of fulfillment to make such a meaningful difference in my child’s life.  I just have to learn what is truly helpful and what is just stress.

I think there’s something else happening in the anxiety I experience over other people’s feelings, and over my kids’ feelings, in particular.  All my life I’ve been overwhelmed by any strong emotions in myself or others.   When my parents would argue, I shut down.  When other girls picked on me, it was the same thing.  Instead of expressing or even just processing something, when it got to be too much, I turned it all off so that I could keep on functioning and doing what I needed to do.   It wasn’t that I didn’t feel anything.  It was that I didn’t know how to respond or what to do about it, and I couldn’t tolerate that state of extreme anxiety for very long, so I found a way to make it stop altogether.  The thing about stopping emotions is that you seem to have to stop all or none of them, so I ended up blocking a lot of good stuff, too.  Thus began my ongoing relationship with depression. 

My kids have plenty of their own difficult feelings, and each of them has a tendency to get overwhelmed pretty quickly.  Simon has been diagnosed with an anxiety disorder, and I know Alvin well enough to know that he has a worse time with anxiety even than Simon.  Little Theo is only seven, so it’s hard to know how much of his reaction to things is just because he’s so young.   What is hard for me to experience with all my kids is that they don’t seem to do this shutting down thing – at least not around me.  Each of them – even Simon now to a large extent – is holding it together through their school day and through some other activities.   Then they come home, and I get to enjoy the aftermath.   Being confronted with a bunch of unrestrained energy and emotion from three different individuals is just not something that I came equipped to handle. 

I find myself a lot of the time either trying to fix what’s bothering my kids so they can be happy or brushing off their feelings in the hopes of not having to deal with them.   I’m wondering if maybe my not wanting to be around their negative feelings is because I’m afraid of experiencing those feelings myself.   If I allow myself to feel what they are feeling along with them, I’m afraid I will be overwhelmed.   It makes me anxious when I am confronted with a stressful situation and I’m not already in an optimal state of mind, because then I don’t have access to my instincts, and my instincts are what I trust to help me make good decisions.  

A while back I started reading a copy of How to Talk So Kids Will Listen and Listen So Kids Will Talk, and a great deal of it is about the healing effect of just letting your child express a feeling and letting them know that you hear what they are saying without trying to fix or judge anything.   This is completely counter-intuitive to me, because like the authors and much of their audience, I hadn’t experienced a lot of that myself growing up, and my own spectrum issues don’t make it any easier for me to pick these things up on my own. I’ve managed to try this approach on some occasions – ackowledging or reflecting back a child’s feelings without adding any emotional charge of my own to the situation – and the results are truly amazing, even with my spectrum son.   It turns out they do have the capacity to work some things out for themelves and even to calm themselves down, and when they still need some help, we’re all in a better state of mind to figure out what to do next. 

I’m starting to see why this approach is so powerful, given the effect that blogging and exchanging ideas is having on me.   Having a place to express myself and a community of people who will respond with encouragement and understanding  allows me to release a lot of what’s bottled up inside and to relieve some of the pressure.  It allows me to breathe and opens up a space where there’s room to care about others.  Thank you all for that.

Scouting for Social Skills

This post started as a very long reply to a post at Pancakes Gone Awry. (If I spent less time commenting, I’d probably write more on my blog 🙂

Our experience with social skills training has been pretty hit or miss. My oldest son, who I’m referring to as Simon here,  is an Aspie and has gotten some benefit from actual social skills groups at times, but most of the progress he’s made has come from real-life training. The groups have mainly given us some information and a place to start, along with a captive audience to participate while the kids work through things:)  Some groups have been more useful than others.  We got an idea of the kinds of things we could work on with Simon and tried to figure out how to fit that into real life situations. We stopped going to the last one a few years ago, because we felt he had kind of maxxed out the benefit he was going to get in an artificial setting and that his time could better be spent elsewhere.

 My husband and I kind of zeroed in on Cub Scouts and Boy Scouts  as being groups that would be more accepting of our son and his social difficulties  because of being faith-based and aimed at building character.  As my husband put it, “they kind of have to take him”, in order to be true to their values.  And we felt they would provide more variety of activities and less competition than other options that were available. Also, in our experience, structure is good.

My boys are all scouts now:  One Wolf Cub, one Star Scout, and one Life Scout.  Simon, in particular, has had to be pushed quite a bit at times to keep with the group for this long because of all the ways in which it has challenged him. We’ve gone through public and private meltdowns, anxiety attacks, and the discomfort of watching your kid struggling in front of others with things that come easily to most . It was harder when he was little, too, with lots of little guys running around and making noise much of the time.  Simon’s also had issues with all the time and effort required, and sometimes with the physical accomodations of all the camping.  And my wonderful, supportive husband has attended every meeting, campout, etc., and has spent much of his time being a group leader, because our boy just wasn’t going to be successful doing all this on his own.

Simon’s come a long way and doesn’t require that level of pushing these days.  Scouting has done wonders for him in mind and body.  He’s accomplished things and met challenges that he never would have attempted on his own.  And he’s had ongoing opportunities to learn how to interact with other boys and men in a safe, supportive, and structured environment in which how people treat one another is taken very seriously.  He’s handled boards of review for rank advancements, speaking one-on-one with with merit badge counselors, making speeches, and countless supervised activities with other boys who are working on similar goals.  In addition, the physical challenges have been great for his sensory system.

We have been blessed to know several other families with boys who joined the same year as Simon and also stuck with it, and they have  been very supportive and are great friends.   The boys are all taller than I am now and have become fine young men. They have all learned skills and values that will help them throughout their lives, including some very important social skills. Simon is currently one rank away from becoming an Eagle Scout, and I couldn’t be more proud.

Simon still has challenges with this activity, as he does periodically with most aspects of life.  And I certainly don’t mean to suggest that every Aspie kid out there ought to join scouts.  I don’t believe there’s any group or activity that’s going to be the right fit for everybody.  And I’ve been unhappy and overwhelmed with it at times, because it’s been real work, and it’s been hard.   It’s just nice to share an experience that we’ve found to be of ongoing value in our lives. 

We  have been very blessed in terms of the group of people with whom we ended up through these years.  Some have come and gone, but the overall atmosphere and values have remained consistent.  Of course, our family has been part of shaping that group, too, which is probably why it has worked so well for us.

BTW, did you know that Steven Spielberg didn’t have any interest in film or photography until he started working on the photography merit badge?  He’s an Eagle Scout.  This link lists quite a few more famous eagle and non-eagle scouts and some stats about how many people achieve the eagle rank (on the off chance that anyone is interested):

http://usscouts.org/eagle/bsfamous.asp

My husband has a master plan for helping our extremely busy oldest son to achieve his eagle rank without having to push him too hard – he’s going to push the younger brother, instead.  No way our ultracompetitive Aspie son is going to stand still for his younger brother passing him by.   I really can’t argue with the logic 🙂

What's in a Name? (short)

For anyone who has read any of my other posts, you’ve probably noticed that I haven’t shared the names of my family members.  This is a pretty new venture for me, and while they are being supportive enough, I’m not at a point at which I want to go any further in invading their privacy.  I ran through way too many pseudonym possibilities in my head, because I get fixated on this sort of thing.  I could have used initials, or middle names, or the names of fictional characters.  I kept trying to come up with things in sets of threes.  The Three Stooges immediately came to mind, since I have three boys, and their behavior often makes me feel like I’m in one of those movies.  But I don’t actually care for the Stooges, and it’s my blog.

The Three Musketeers’ names sound a bit too formal.  And my favorite naming of threes – “”Hi, I’m Larry; this is my brother Darryl, and this is my other brother Darryl” – would just be confusing 🙂  I didn’t want the kids deciding to check this out later and getting all bothered by anything after the fact, so I ran some ideas by them, and they have agreed (with varying degrees of enthusiasm/reluctance –  that  they will live with occasionally being referred to as Simon, Alvin, and Theodore.

Here’s a wiki description of the originals: “Alvin, the mischievous troublemaker, who quickly became the star of the group; Simon, the tall intellectual; and Theodore, the chubby, impressionable one.”  So my kids don’t entirely match up –  even aside from not actually being animated rodents.  But my Simon is tall and very brainy (he’s also my guy on the spectrum); my Alvin is the guy who goes around stirring up trouble, is musical and likes to perform; and my Theodore still has those chubby little boy cheeks and likes to ask questions and follow in the footsteps of his big brothers.  Anyway, for now it works for me.

I can’t really call my husband Dave, in keeping with the theme, because I have a sibling by that name, and it would just be weird. So until I come up with something acceptable, he can just be Hubby.  It’s not that interesting, but I think he’ll prefer that to Captain Tightwad, which is the only other name that keeps popping into my head with any regularity 🙂  That’s not very nice, is it?  Still, it’s my blog.

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