Finding Ourselves on the Autism Spectrum

Archive for the ‘Friendship’ Category

Shutting down and bouncing back

It appears I haven’t written a blog post in two months.  I’m not really surprised.  I’ve absorbed a bunch of new duties into my daily schedule, and it has required a lot of extra time on top of that to adjust.  I have managed to visit the occasional blog here and there and even to leave a few comments.  Gradually I’ve been trying to work my way back into things.  I’ve had ideas for several blog posts in the past couple of months that quickly disappeared when some new pressing issue needed my attention.  My kids will be on summer break from school soon, and since that will improve some things and make some more challenging, I really have no idea yet what my schedule will look like or whether I’ll have the time or inclination to write anything.  When I get too overwhelmed, I tend to withdraw and not want to communicate with anyone, and that’s been happening a lot lately, too.  Old habits die hard.  But since I already wrote an extremely long comment in response to this post at Alienhippy’s blog

http://alienhippy.wordpress.com/2011/06/04/i-think-it-is-my-trip-switch/

I thought I’d take a shot at expanding it into a post of my own and see what happens from there.

I was just coming out of another shut down yesterday.  I’ve been experiencing this off and on a lot lately, probably because so many things have been pushing me way beyond anything resembling my comfort zone, which isn’t that large to begin with.  My son was having a shut down of his own yesterday after overloading on what were a very productive couple of days for him  (we have officially survived the biggest part of his Eagle Project – yay! :)), and needing to deal with his difficulty on top of everything I was already experiencing was a bit much.  I was kind of expecting it, but I still wasn’t really prepared.  And it kept coming in waves.  I’d think I’d helped him past something, and then a new anxiety would take its place.  I didn’t know what he needed and just kept trying all the different tools in my toolbox to see what might help in some small way.  I don’t think any one thing actually did the trick, but the combination seemed to eventually move things forward.  It’s like that with me many times, too. Thankfully, we’re both doing better now, but I still feel a bit discouraged knowing this isn’t something we’re likely to ever really get past.

For some reason, I think I feel guilty when I shut down, like I should be able to do better after all these years.  Mostly it seems to come from who I am and what I feel not being compatible with what’s expected of me and of others.  I need more down time, more time to process things, more stim time, more explanation of things, more help, etc., than what’s considered acceptable.  I don’t seem to know what I’m supposed to know or to be able to handle what I’m supposed to be able to handle.  If I’m honest, I usually don’t genuinely feel bad about myself.  It’s more that I’d like the rest of the world to adjust please, because I don’t fit here, and neither does my son, and I happen to know we’re both good people who are honestly doing our best.  I’d like for our best to be good enough, because it’s really all we’ve got.

Being confronted with too many demands on my time, my mind, or my sensory system tends to make me shut down, and being shut down seems to drain every bit of my energy.  It becomes a chore just to wash a dish or walk up the stairs, and talking to people is even worse.  I hide my issues as best as I can, maybe because I don’t want to be evaluated and found wanting any further than I already have been.  I try to sneak off to be alone and fixate on whatever I feel will help me at that moment, and when I can’t because of circumstances or unhelpful people, I become anxious and irritable and have trouble thinking.  When I do come out of that state, it feels a bit like a flood of energy, although I seem to be very low energy in comparison with other people, so that flood doesn’t last too long.  Sometimes I think of it like I’m riding a wave and try to use that energy to get a lot done, because I know I won’t have it later.

More and more these days, I am learning to accept who and how I am, and this allows me to do what I need to do to help myself much sooner.  I know that I have to meet my needs, because no one else will. I need to do whatever I need to do and to indulge whatever obsession I’ve currently got going in order to feel OK again, and it’s better for everyone around me if I just go ahead and do that.  The longer I wait, the worse things get, and I end up behaving in ways I regret and taking much longer to recover.

I tend to shut down less if I keep spending time focusing on spiritual things, and often that’s what brings me back around if I’m not too far gone.  But there are times when I let things go too far, and I have to indulge some other needs before I can approach anything with deeper meaning.  I think those are the times when I start to feel guilty, because I feel like I should have caught it sooner.  Then I have to practice forgiveness of myself and others in order to start over.  I really expected to be much more spiritually evolved by this point in my life. 🙂  Every day just seems to be the same struggle over and over – some feeling more successful than others, but none really fundamentally changing me or my situation.

It’s hard for me to watch my son go through this, because he has much less coping ability at this point.  Then again, he also has me, and much of the time I do seem able to help.  He also has a lot of great supports at school and at Boy Scouts and among our friends.  I sometimes wish I’d had more of the helps that he has when I was growing up, but then again, I managed, and I grew into someone who can help myself and help him.  So one way or another. we’re both doing  OK.

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Letting in the light

"Kirche Gröben" (big church), Brande...

Image via Wikipedia

So I’m just realizing something. I tend to think of myself as not being particularly creative. I can frequently see new ways to apply other people’s ideas – which I suppose is creative at some level – but I rarely come up with anything original on my own. I’m OK with that. I have other skills. But as I’m looking back through some of my old journals, I’m realizing I was actually making something up – I was trying to put down “nice” things and to paint a pleasant, “normal” picture of our lives fit for public consumption. Not so much in Simon’s toddler journal, because that was really written just for myself. But later on, I started taking some journal entries and emailing them to family living hours away. Somewhere along the line, I started writing with my little readership in mind, and I censored myself accordingly. I wrote what I thought would be amusing or cute to make aunts and uncles and grandparents feel good and feel positively about my own little family. There’s nothing inherently wrong with that. The grandparents, in particular, seemed to enjoy it quite a lot and look forward to my next installment.  But I had stopped writing for myself.

Then there was the wall my Simon hit in first grade. After we had pretty much convinced ourselves that we had this “recovered” autistic child and were happily patting ourselves on the back, we discovered whole new issues and a whole new level of discomfort. I still remember the first phone call I got two weeks into the school year informing me that Simon “wasn’t adjusting well” to first grade. That started us into a downward spiral from which it’s taken years to climb back up to a place where the future looks promising again, if very different from what we had previously envisioned.

When Simon was little, the things with which he needed help seemed more straightforward to me – talking, turn-taking, sensory issues, motor skills. I seemed to have an aptitude for approaching these things, and more than one therapist suggested I might make a decent therapist myself. And while Simon had enough social anxiety at four years old to warrant putting him on medication, he’d made great progress and had been off the medication and doing fine for months by the time he finished kindergarten.

Then first grade came with a full day of structured activities, more challenging social interactions, and a well-meaning teacher with terrible instincts and no time to listen to me. Simon began to hate school and to see many of the people around him as enemies. We were dealing with school staff who didn’t know much of anything about autism and seemed to need to see their own methods fail before considering any of our ideas – not that we had much clue what we were doing, either. We were in uncharted territory, and we had little in the way of guidance. But we were definitely having more success at home, and we knew there had to be a way to expand that into our son’s school experience.

While all of this was going on, we were still living in the same neighborhood and seeing all the same people we had before things went downhill. We didn’t know how to explain to them that the child who seemed fine when they saw him in other situations was really struggling now just to get through a regular day. For better or worse, Simon eventually started having problems in other areas, too, as he lagged behind his peers socially. My husband took the lead on talking to some of our friends. I mostly did what I do, which is to shut down. I was never very comfortable socially myself, and having a child so different from everyone else’s made that much worse. I stopped talking or writing to people except when I could come up with something to say that was both pleasant and true, and that happened less and less frequently. I was too overwhelmed with the challenges we were facing to care much about that at the time.

I became more and more isolated not knowing how to “fix” everything that seemed to be broken. I didn’t know how to process having a child who was not only struggling but was doing so in such a way as to make people believe he was purposely being difficult. He didn’t cry or withdraw every time he got overwhelmed anymore – now he was becoming angry and confrontational. I’m going to go ahead and give the first grade teacher a big slice of the credit for that development. I eventually started calling her the “High Priestess of Love and Logic” behind her back. It worked with her own kid, so it must be the answer for everyone. My son’s reaction to being continually asked to solve his own problems when he had no tools for doing that was to finally get fed up. And while he made improvements all along the way, I’m not sure he’s ever really stopped being fed up. However, he has started to see the positives in some things and to actually want to do well in school and get along with other kids, and that’s huge.

So the original point of all this when I started writing today – besides distracting myself from dwelling on Simon’s upcoming optometrist appointment – was that the reason many people don’t know much about our lives is because I haven’t actually told them much of anything. I’ve continued to write occasional emails and to make infrequent visits to see family and friends who don’t live near us, all the while trying to look like everybody else. And while I find myself mentioning autism fairly early in meeting folks in our neighborhood these days, they mostly don’t actually see much of Simon – except those who have know him for years and have kids whom he sees at different activities or even, on rare occasions, just to hang out and play games.

It wasn’t a conscious effort to exclude people. It was just that for so long we were the only people I knew dealing with any of this. I only ever talked about things with teachers, doctors and therapists, and my husband. Gradually we’ve let some others in, and we’ve even met a few other families in similar situations. People have been overwhelmingly supportive and understanding – or at least not openly judgmental. No one besides the occasional playground bully or passing stranger has ever been deliberately unkind. Most people want to be kind, and if they don’t, then I don’t want them in my life.

So why do I find it uncomfortable outside this wonderful blogging community to share when we’re having a “moment” or a struggle and it happens to be related to my child having autism? I have no problem mentioning injuries, attitude problems, or things I just find frustrating. I’m sure people I’m friends with on Facebook know more than they care to about the vehicle I currently drive. They all know I “share” items related to autism from time to time, and a few have either asked about our situation or asked for some general information on the subject. I suppose I just have it in my mind that most people aren’t going to “get it” when I share something spectrummy, because that’s not part of their experience. It is, however, part of mine – every day. And maybe people who care about other things going on in my life would like a chance to show that they care about these things, too.

So I posted something spectrummy on my facebook profile today about Simon’s anxiety over going to the eye doctor, and  I’ve gotten several supportive responses already.

“Begin challenging your own assumptions. Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won’t come in.” ~Alan Alda

(I love Alan Alda.)

As I let little streaks of light into this closed-off room of mine, I can see myself and my life a bit better, and I’m finding myself wanting to let in just a little more.  Sharing through this blogging community has become part of a larger process for me, and I’m grateful to be having this experience.

Processing

I’ve been really flustered lately. And now I’m up at 4:30 in the morning, because I was having a weird dream – I rarely remember dreams unless I wake up in the middle of them – and then I needed to use the bathroom. Now my thoughts are spinning, but not in the usual negative loops. It’s just been a weird and busy few days so far, and I seem to have a lot to process. So instead of lying awake in bed running through all of it randomly over and over again, I’m going to give a shot at typing it out in order to process it all a bit and see how that goes.

My kids are on a week-long break from school, and that’s always a bit of a challenge for me. We started out the break with a visit from my parents who live about four hours away. My dad and I both have birthdays this month – mine was on Saturday – so that and my parents’ anniversary last month were excuses to celebrate with ice cream cake and a dinner out as a family. We fit in some euchre and board games, my dad and Hubby fixed a couple bothersome things in the house, I baked some bread and some brownies, and my husband grilled out in the middle of a blizzard.

That last bit probably requires some explanation. There was a big shift in the weather for the weekend after Hubby had already bought these little steaks he was all geeked about, and Theodore had a Cub Scout requirement about helping to prepare (not actually doing the cooking part) a meal cooked ( not necessarily eaten) outdoors. It was humorous enough for me to call various family members over to see at different points, but sad enough that I didn’t take any pictures or videotape, because I felt sorry for miserable snow-covered Hubby.

Back to my winter break. So, nothing momentous happened over the past few days, but a lot of things have just felt weird and have been accumulating. I turned 43 on Saturday. (I had actually been getting a kick out of 42, because it’s supposed to be the answer to Life, the Universe, and Everything :).) My three boys have been absolutely bouncing off the walls and each other, which stresses me out even when my parents aren’t around to watch. I’m having a very hormonally challenging week, too – probably TMI, but that’s been having an unusually large effect on me in the past few years. And there was a full moon on Saturday. Hubby keeps bringing the car home almost out of gas. Hubby also had to go in to work three different times during the weekend. My own car keeps needing to be jumpstarted. Water has had to be shut off in different parts of the house to accommodate the repairs Hubby and my dad were doing. The weather got lovely and warm for a couple days, and then we had enough snow the morning my folks were leaving that we had the whole family out taking turns with our two shovels, the brushes/scrapers for the cars, and the rock salt before they could get on the road. Theodore had his eight-year-old twin friends over to visit for about four hours yesterday. And Simon has been particularly out of sorts lately for a variety of reasons.

I appear to have actually been successful at pushing Simon to get all of his winter break homework done at the beginning of the break, when he still remembered what assignments to do and how to do them. And he made plans on his own for a friend to come over, which almost never happens. Good things, but not the usual for us. On the negative side, he made a complete fuss over a missing Nintendo DS stylus that he likely misplaced himself and for which we have several replacements. He also got too overwhelmed to make it to the last several meetings of the robotics club. And he got completely stuck when asked to make a birthday card for me – a task he does for various people several times a year with no problem, and that he managed for his grandpa just fine.

I had to obtain a replacement stylus before Simon would budge for our family meal out, which made me a cranky dinner companion. I also pretty much told him what to put on my birthday card, just so he could fulfill his dad’s requirement three days after the fact. I talked him through options for handling his friend’s request for sharing something on a videogame that was making him uncomfortable to share. He got to bail on the robotics thing even though he really didn’t have anything else to do. And I let him pretty much avoid everyone for the four hours the twins were here.

It all sounds pretty wishy-washy on my part, but it just felt on an instinctive level like he was in a bad place and needed some accommodations. Alongside the accommodations I’ve been insisting he still do his morning jobs and keep up with his typing practice and that he get a modicum of exercise. I’ve also been having him make a fair amount of his own food. I asked him to ride home with his friend who had been over to visit on Monday and to talk on the phone (eek) when another friend called to make plans to get together. Yesterday I took him to the store to buy Yugioh cards when he made a request, but then I asked him to go look for them on his own while I shopped for groceries. He looked and sounded ready to balk at that part. Apparently he had wanted to go with me to avoid being asked by his dad to do things like this on his own, and I was messing up his plan.

I didn’t insist, but I started a conversation about where he wants to be a few years from now and what small steps we can take in a positive direction. I’m not sure if he changed his mind or just wanted to get out of the conversation, but he headed off toward the trading cards on his own. I was just texting him to see how things were going when he showed up behind me with his mission accomplished and looking pleased with himself. He then helped with the checking out and offered to push the cart, and at home I asked him to bring in the recycling containers and make our salad for dinner.

While Simon and I were out shopping, Alvin and Theodore actually played Legos together for an extended period without fussing or fighting with each other. I honestly can’t remember the last time that happened. They built a Lego town of their own design and both seemed very pleased with it. Alvin was also a big help earlier in the day keeping an eye on Theo and his little friends who were visiting and heading off signs of trouble before anything could turn into a big problem. It was definitely an unusual day.

Later last evening Simon started a conversation with me that rambled all over the place from what were the first signs I had noticed that he had autism to why he isn’t yet feeling interested in dating. He asked lots of questions. He even started reading a part of Tony Attwood’s book on Asperger’s that I handed to him partway through the conversation. It was strange, but very cool.

So now it’s 6:30AM, and my family will be up in a bit. My own car is almost out of gas and will likely need a jumpstart. I have no idea what we’re going to have for dinner, and Theodore needs a present for a birthday party he’s attending today. Alvin will need a ride home from his sleepover at a friend’s house. I think I’ve cleared my head enough that I may be ready for a nap. As for the rest, I guess I’ll find out when it happens. 

Perspective

I haven’t been in much of a writing mood lately. For me, that comes and goes. Figured I’d better sit down and try to write something, though, before the inertia becomes to strong for me to get going again.

I woke up in a bad mood yesterday. Just generally feeling really off, and the way the morning proceeded did nothing to convince me that it was going to get any better. Simon is always out of sorts in the middle of the winter, and it becomes a struggle for both of us just to manage the normal requirements of the day. On this particular morning he had also lost track of his school ID and a couple of assignments, and his binder for one class had come completely undone and out of order. He had also been up late working on some of the homework that he couldn’t find, and he hadn’t had much free time after putting off things that should have been handled on the weekend, so he was in a pretty foul mood. It was not a good start to his day, and I was too tired and frustrated to be particularly patient. I really hate sending him off to school like that, and I spent the whole day wondering when a phone call would come telling me that his school day had fallen apart, too.

After Simon leaves, I get Alvin up. He’s usually runs pretty much on automatic, so I was able to squeeze in a quick shower before getting him out the door. Theodore requires more attention, and there was some arguing involved in convincing him that this was not the best day to tell Mommy that morning chores were done when they actually weren’t. I got him to school, too, then headed home to regroup before starting on some errands.

When I arrived home I found my friend from a few doors down and her two youngest children at the foot of my driveway. She informed me that she’d misplaced her car keys and needed a ride to the school. She figured being so late she’d need to sign her daughter in, but I said my Theodore had gotten in OK and asked if she wanted for me to just take her daughter and give it a shot. At this point my friend disappeared from view at the side of my car, and I discovered she had fallen on the one patch of ice remaining at the foot of my driveway. She was sore, but nothing was broken. I offered to take her and her son to his doctor’s appointment, but she insisted it was within walking distance and that she wanted to walk. I got the daughter to school, then headed back to check and make sure she was still doing OK before going on with my day.

My own day started looking better to me right around this time. My friend has two of her four kids on the spectrum, and a third has an auditory processing disorder. Her husband had recently broken his wrist very badly falling on some ice on their own driveway and has had the first of two surgeries. She works weekends as a nurse to help support her family. And then she went and lost her car keys and fell in front of my house on her way to walk to an appointment. Yeah, my day wasn’t really all that bad. She called me later to say she found her car keys – in the ignition of her car and turned, so the car battery was dead. I couldn’t even offer her a jumpstart, because my own car has had to be jumpstarted almost every day in the past week – but at least the rest of the time mine was running. She had an AAA membership and got someone out to get her car going, so it all turned out fine.

I had another perspective-changing moment later in the day when Simon’s teacher consultant called. This woman is just about the most useful individual in my world right now and provides just the right official and unofficial support for my son in his school day. She actually listens to what I have to say and trusts my judgment, and she does a lot of the interacting with the parapro and teachers when things become difficult. She really seems to understand my kid and what he needs, and she’s always very positive and notices progress he’s making even in the midst of problems. Besides officially meeting with her twice a week, he eats lunch in her office every day and has a chance to decompress and and mentally sort through his day, which makes a huge difference for him.

The teacher consultant primarily called to address a question I had raised with regard to scheduling classes for next year, but we ended up discussing how much Simon seems to be struggling right now and how on top of things he had been for a little while previously. His pet dying really hasn’t helped, and neither have the snow days and school breaks and sick days that inadvertently took away his momentum. The good thing about the conversation was that I found myself pointing out just how much better Simon is doing that in previous years and how his off days now look better than his best days used to look not so long ago. She hasn’t had the opportunity to see this for herself, since she’s only known him for a few months, so I really appreciate her taking my views and my experience so seriously. We ended on a very positive note about hanging in there and appreciating all the positives and all helping where we can, and I became determined to be a force for good and optimism and appreciation for all my kids’ good qualities and accomplishments by the time they got home.

My whole attitude turned around. Truth be told, I haven’t been all that much fun for the past several days. I put a colorful welcome home sign on my door and a smile on my face and greeted each of my family members with genuine joy at their being with me. Nothing in the evening went much differently than usual in outward terms. We still had activities and homework to manage and conflicts arising, but I didn’t take it all so personally. I handled each thing as it came up, even including a 20-minute phone call (I hate the phone) discussing a potentially stressful situation at our elementary school . I made sure people’s needs were met, I was flexible and adapted where needed, and I even infused a little playfulness and humor into the evening despite some initial eye-rolling from my older children. It didn’t fix everything, but it really did help to keep things from spiralling out of control. And these days, for us, that’s about the best I hope to get.

It’s carried over into this morning. I got up late. Simon was moving in slow motion all through his morning, and the out of order binder from yesterday that will be graded soon is still out of order. Alvin was upset with me for making him do five-minutes-worth of morning chores after I woke him and he fell back asleep. I was out of Theodore’s favorite school snack and forgot to buy more the last time I was at the store. And I didn’t panic or get upset over any of it. And because I didn’t panic, neither did anybody else – at least not for more than a minute. I have to say, though, that I have real concerns about any group in which I am expected to be the calming influence. 🙂 I wonder how long this will last. For now, I intend to enjoy it while I can.

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.)

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.

 

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