Finding Ourselves on the Autism Spectrum

Archive for March, 2011

The challenges of visiting family

In a comment on my last post, Aspergirl Maybe linked a very useful letter, written from the perspective of a child with autism to family he is going to be visiting, that I’d like to share here:

http://joyinthevalley.wordpress.com/2010/12/22/holiday-letter-from-an-autistic-child-to-his-family-and-friends/

My response to her very thoughtful suggestion relates to an upcoming trip of mine to a family wedding, and it grew into a blog post of its own:

I think this type of letter could probably provide some enlightenment for some of my family members and even friends about specific issues relating to our situation, although I think they will be the ones who already listen and respect my needs and those of my family.  They are also the ones with attention spans long enough to read a carefully worded letter.  I do feel like it’s time to start sharing at least a bit more with them.

The Others:

There are some other family members who don’t generally give the impression of hearing me no matter what the subject matter.  They appear not to listen or read past the first few words I try to share, and I feel flustered enough around them that I know I take a lot of words to get across what I am actually trying to say.  I also don’t know how to deal with these people when they dismiss the things I do say because they believe they know better (on what basis remains unclear) and try to push me into making the decisions that they think are best.  I’m fine with making my own decisions and am not really looking for their input, but they give indications that peaceful relations are dependent upon my going along with what they think.  They often come across to me, and I believe sometimes to others as, well, “pushy”.   I don’t really know a nicer, clearer way to say it.    Nothing I say seems to make much difference, simply because they aren’t actually hearing anything I’m saying or are only taking in enough to facilitate them dismissing what I say, unless, of course, I happen to agree with them.

Most  family members just seem to know how these individuals are and to not be too bothered by them, although occasional scenes arise when strong tempers are involved.  These individuals are always kind to my kids, but they interfere with my parenting and me doing what I need to do for our particular needs, and that’s not OK with me.  The way they see it, they are just trying to help or to make things more fun, and it feels like they would take offense at any suggestion otherwise, because they also come across as very defensive.  I know there are lots of people like this in the world, but I don’t choose people with these personality types as friends.  I only have these few in my life because I’m related to them, and they are close to others who are close to me.   When I try to communicate my needs with these people and they don’t listen, I become very confused and frustrated, probably greatly out of proportion to anything that anyone else would find the situation itself warrants.

Communication difficulties:

I’ve run into some major difficulty fairly recently with trying to communicate with a particular couple of family members through writing.  Almost everything I said was misinterpreted, and trying to explain myself just seemed to make things even worse.  Even my attempts at apology and taking responsibility for the communication difficulties (this was probably not the best time to bring up the whole issue of thinking I might be an Aspergirl) were called irrational and passive-aggressive, which I found very hurtful.  It soon became clear to me that the only way to calm things down was going to be for me to just say everything was all my fault and to ask forgiveness without looking for anything in return.  It was really the only move I felt I had left.  It did the trick, and they calmed down and now appear to have decided we’re all fine again, but it left a bad taste in my mouth.  I’ve been working on my own forgiveness issues with regard to them, and I’ve let go of most of my anger, but I’m left with some serious trust issues.

Travel difficulties:

Part of the problem for me in having to travel to see family is that I have issues with the travel itself – joint pain, car sickness, separation anxiety from sources of comfort, and a kind of situational claustrophobia that comes from being cooped up in a car with four guys.  And that’s when everyone is getting along, which becomes less likely the longer the trip continues.  These difficulties leave me feeling very much out of sorts when I first arrive someplace and for a long while afterward.  I’m not exactly at my best for dealing with challenging personalities at that point.

Another thing that’s a problem for me in traveling is my concerns about sleeping arrangements and how we will deal with sleeplessness in myself or other family members.   To sleep sitting up in a car just doesn’t happen for me. (I once spent the night lying on the floor of a school bus on an overnight trip, because I was the only one who couldn’t get to sleep in a seat.  Yes, it was as gross as you’d imagine, but I was so tired that it no longer mattered.)  My kids only sleep in the car if they’re really exhausted and we’re driving at night.  Being able to sleep wherever we’re staying really does matter.   Sleep problems are an issue with all of us at some point or other, but here at home we always have other rooms available and can move around. Usually it’s just one of us having difficulties, but some nights it kind of turns into a night-time version of musical chairs, and it’s interesting to see who ends up where by morning. 🙂 I know for many people, they just need a place to lie down and stretch out and they’re good.  We’re usually more high maintenance.  Hubby doesn’t always get this part, because he can usually fall asleep anytime and anywhere, although staying asleep is sometimes another matter, and he’s often up in the middle of the night or very early morning doing computer stuff here.

When we stay away from home, things can become more difficult, because the extra rooms are usually occupied by sleeping people who would probably prefer to remain asleep.  Also, when we’re visiting with family, everyone wants to stay up late and has a hard time winding down to go to bed.  Then during waking hours, the ones who didn’t get enough sleep and couldn’t do anything about it end up cranky and short-tempered.  The upside is that sometimes we’re exhausted enough from staying up to go right to sleep, but that’s not always the case.  For myself, I rarely get a decent night of sleep away from home, partly because I end up having to sleep close to family members, some of whom make enough noise that I can only manage a few hours of sleep even with earplugs.  I also end up dealing with whichever of my children is either having sleeping issues or just can’t get themselves settled down to let the others sleep, and that cuts into my own sleep time, as well.  None of this tends to bring out the best in me, but I can usually get by for a while with people whose company I enjoy.

What to do about it all :

Having already had some unpleasant experiences that were difficult for me to understand, now when I’m with certain people, I tend to feel anxious or threatened.  My fight or flight response kicks in, and it’s hard to communicate effectively in that condition.  Difficulties associated with travel make it worse.  I’ve already had some discussion with a couple of people I trust about options to help with sleeping arrangements and with having some space to ourselves when we need to regroup.  In terms of practical preparations, we’ll do what we can.  For personal preparation, my main goal at this point is to build myself up enough before I go that I can be firm about my own decisions without becoming angry or defensive in the process.   That last bit is the tricky part.   The one thing I don’t want to do is to make a challenging situation even worse.  I’m hoping that continuing to process my thoughts and feelings through writing will help to facilitate my self-assurance and peace of mind.  (And if anyone here wants to kick in any suggestions,  I’m definitely willing to listen. :))  I’m also working my way through some Zen literature that has helped me with difficult feelings in the past.

Cover of "Taming the Tiger Within"

Cover of Taming the Tiger Within

I think I may have to work on maintaining those qualities of peace and feeling secure within myself  in the presence of some stronger personalities before I can be calm enough to communicate effectively with them.   I think it’s at least worth some time and effort on my part trying to improve these relationships and the effect they have on me  and my family.   Honestly, I’d really like to get to the point that  all of this stuff can be in the background, and we can relax and enjoy what should be a very special day for two very special people.

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Letting in the light

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

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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.

Eye exam anxiety

A typical Snellen chart. Originally developed ...

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Hi, Blog Friends.
 
Simon is going to his first eye appointment today to see about a problem he’s having in one of his eyes.  He’s having blurry vision in one eye, which may relate to an injury last year that we thought was no big deal, because he said he was fine. He’s nervous about the exam, and he’s worried about the possibility of having to get some type of corrective lenses.   He got upset enough about failing a routine school vision screening that he needed to come home.  Going to drag my 6-foot-tall autistic/ anxiety-disordered son there anyway, so any prayers or positive thoughts you’d like to send our way for a peaceful experience and a positive outcome would be appreciated. 
 
Thank you.

Then and Now: Back to what works for us

Looking back through my journal again. Even as I delighted in the expansion of my toddler’s attempts to use his limited communication skills to include other people, I was also becoming more aware of the differences between him and other children his age. I tried to follow as much of the therapists’ advice as I could at home, but the advice wasn’t specific to our child, and it wasn’t always a good fit. Trying different things, making observations, and building on whatever seemed to be working was usually a good way to go. That’s still the approach I find myself using today.
 
 
August 30 – September 2

 Connecting with others:

Too much stuff to remember all of it. Highlights from our trip included the following: Simon really seemed to recognize and be happy to see each of the grandparents and to feel safe being left alone with them. He also seemed to genuinely recognize each of the houses, even K and S’s, and to go straight for the stuff he had enjoyed there on his previous visits. Despite developing a cold and spending lots of down time watching videos (especially the new Pooh one), he spent lots of time playing and paying attention to people, especially the kids. Simon played peekaboo with A for quite a while and seemed to be having a terrific time and trying to communicate with him like he would with me or his dad. He played with toys on the kitchen floor with E and did pretty well, even though he kept trying to be in charge of all the toys. The trip really showed how much progress Simon’s made lately compared to the last time everyone saw him. He recognizes people and places, he seems to have developed a real bond with his grandparents, and he waves spontaneously and frequently now and uses his hand signs and pictures to communicate with anyone he can.
 
 
September 3

 Noticing differences:

The little guy seemed incredibly wired and stressed after breakfast and kept making a short “ee” sounds over and over most of the morning. Tried gymnastics class, which was a little more structured and stressful than I expected. Even though several of the kids got cranky or whiny at different points, I really noticed a difference in how they participated in group activities compared to Simon. He enjoyed all the neat stuff to play on but was very unhappy about having to wait. He also seemed to have no concept of following along with what others were doing. Still, he was very comfortable with the instructor, and she was very patient and said he did just fine and the activity could only be good for him. He woke up in an unpleasant mood from his nap, and somehow seemed like he wanted to say something and was very frustrated. He perked up during playtime with Daddy, then spent some quiet video time, after which he was very wired. He stayed up a little late and had a bath downstairs. He seemed to enjoy the novelty. He babbled a lot all through the later part of the evening. He stilled babbled a little after story time, but went to bed peacefully enough.

 

 September 5

 Back to what works for us:

Kind of a crappy morning. “Modeling” the ASL sign for “more” (which is a little different from Simon’s) while saying “mmm-more” over and over again (on the new speech therapist’s recommendation) just seemed to confuse Simon. He fell twice at the library, and I kept trying to restrict his mess-making, because a librarian was staying so close by, so he was in a pretty bad mood. Both our moods stayed fair to rotten through the rest of the errands, and Simon seemed not to remember his “more” sign and kept using the one for “pacifier” instead, even though he was trying to get more grapes and even though I kept asking him to say “more”, which he usually understands. Finally I gave in when he made it clear at home what he really wanted was just to sit on my lap and watch a video together. So we made a change. I got out his favorite Pooh video, sat with him until he got up to play with the new toys and his macaroni box, and we ate a nice lunch together in front of the TV. At naptime I put Eeyore, Tigger, and Piglet in his crib by his head, and he smiled and went to sleep without a fuss. Time to get back to what works for us, and we’ll let the new ideas fit in where they can.
 

Ended up having a very nice afternoon and evening. After not having seen the sign at all for at least a day, Simon even went up to our cat, Charlene, first made a sign for water, then turned one hand over and made our sign for “kitty”. I got very excited and let him know how wonderful that was. He then went up to our other cat, Andrea, and did the same thing. After that we played outside, including some time with sidewalk chalk. He was happy and active through the evening.

Every bit of progress that Simon made when he was little was exciting and noteworthy for us. Truth be told, it still is. We haven’t been able to take a lot of things for granted, because each step forward represents so much time and effort for him and for us. It has never been simple or easy, but it’s been tremendously rewarding. I hope it’s made us better people. It’s certainly made us more appreciative of all that we have.

 

 

 
 

Regrouping

I’ve got too many things running through my head at once to think out a coherent blog post this morning. But I’m in a happy sharing mood, so I’m just going to babble on for a while and see what comes out.

 My new address:
 

The first thing on my mind is that I’m glad I went ahead and changed my blog address – which also meant changing my user name – especially since it turned out to be a lot simpler than I thought. It was something that kept nagging at me after I unintentionally chose a username with my actual full name in it, which I use for lots of things, and realized that became the basis for my blog address. Goofy, I know, but I often tend to miss details like that. I focus in on one tree at a time, missing the forest and many of the other trees in the process. I haven’t had any bad experiences with my blogging so far, but I’m still pretty new to this, and I’m not ready to share the more spectrummy aspects of our lives with people who know me outside of this community at this point. I also don’t want to do anything to make my kids uncomfortable, which is why they already have pseudonyms here. So, anyway, this gives me a greater degree of comfort.

Simon was reading my blog:

I learned yesterday that my Aspie teenager had been reading a bit of my blog, probably because it was left open on my computer, which the kids end up using more and more for homework. I think for the most part he’s been ignoring it, but yesterday he asked a question about my choosing to put something in all caps in a recent post. He didn’t seem bothered at all by what I had written, and he generally lets me know in a big way when he’s bothered, so I’m happy about that.

We all need a mental health day from time to time:

Yesterday was a bit of a fallout day for Simon. After doing so well with the very intense experience of the robotics team competition, where his team got this special engineering award 

              

which he wore all through the next day :), he had a hard time managing back at school.  The change for Daylight Savings Time really didn’t help, either. (I’ve never been a huge fan of DST, and when we lived in Indiana for two years, we didn’t have to observe it.) Anyway, Simon made it reasonably well through Monday and even the beginning of Tuesday. By reasonably well, I mean he fussed a great deal and made a point of saying “this is insane” and “I really can’t do this” over and over again with reference to waking up, doing homework, etc., but with some help from me, he still got the job done. Then partway through Tuesday morning, he hit a wall.

So apparently somebody decided it would be a good idea to do vision screenings on the entire student population of the high school, and we had somehow either not been informed ahead of time or just missed the information. Simon has only ever had his eyes checked at regular pediatrician appointments, and there’s never been a problem. But these folks told him he didn’t “pass” the test with one eye, and that started a downward spiral. (That’s something we’ll pursue at some point, but he hasn’t noticed any problems, and this just wasn’t the day to get into it.) They did the testing during his second hour class, and he got too upset to make it to his third. I got a call from the teacher consultant saying he was in her office and having trouble. I hope I’ve mentioned at some point before that this woman is absolutely wonderful. Besides doing her job of being an intermediary between parents / students and the teachers extremely well, she’s taken time to get to know me and my son, and she lets him eat lunch every day in her office to decompress.

She and I talked. She passed along my assurances that he wasn’t in any trouble and that I would support whatever he needed to do, because he didn’t feel up to being on the phone right then. She called again later to say he was still having trouble relaxing, and this time he did talk to me on the phone. He decided to give a try at going to his fourth hour class, which wouldn’t be too stressful or require much interaction, and after that he decided he was ready to come home.

Hubby and I agreed over the phone that everyone needs a mental health day from time to time, so we were fine with him coming home. I made my boy some food and sat him in front of a funny television program, after which he played a video game. He never got the nap I was hoping for, but he eventually relaxed enough to face completing some homework and even helping Alvin with some of his.  Today he’s back at school and halfway through his day, and so far everything seems to be going OK. We fall down, we regroup, and we get back up again. Thankfully these days the process usually goes more quickly than when he was little. A lot more quickly.

Sibling stuff:

On a side note, poor Alvin had to do an unusual amount of difficult homework yesterday. Alvin takes a math class two years ahead of the rest of his grade, so he’s pretty good at math. And he has what amounts to a study hall at the end of the day, so he rarely comes home with much homework. Last night, even with help from Hubby and his big brother, Alvin spent two hours struggling through trinomial factoring. Simon became more helpful once I said that I’d give him extra video game time to make up for time he spent helping Alvin. 🙂 Simon is also very good at math and takes a class one year ahead of his grade – they didn’t offer two years ahead when he was Alvin’s age, which is a source of frustration for Simon and entertainment for Alvin. The nice thing about this arrangement is that Simon just had everything that Alvin’s class is covering last year. Later in the evening, Alvin told me that there were things Simon could do in seconds that were taking Alvin twenty minutes. Alvin said it took him longer because he’s not autistic. I think that may be the first time he’s referred to Simon’s autism as an advantage rather than an annoyance. I just told him that with all the challenges, his brother gets to be good at some stuff, too.

 

 

 

 

 

 

My new address part 2

Charlotte Moving Company-Moving Simplified-#1 ...

So here I am.  This was easier than I thought.  The rest of my day is balancing that out, though. :), which is why I don’t have anything much to say just yet.

I wanted an address change to remedy having a public username that I hadn’t realized would be public.  I’ve met some very nice folks here and have no problem with them knowing my full name, but I’m not sure I want people I know in my life outside this community – other than the few I’ve invited – to just happen across my blog and connect it with me.  At least not for now.

Please let me know if you notice anything that’s a problem here.

Thanks

Advice on making a change?

Hi.

Some of my blog friends have been participating in a discussion about anonymity, and it’s brought up an issue for me.  I have a confession to make.  Being completely technically challenged, I didn’t actually realize when I input my username that it was going to become part of my blog address and be available to everyone under the sun.  I’m a bit dense that way.  But once I did realize what was going on, I had made some nice new friends and felt like I couldn’t make a change without messing things up.  Then I did (what was for me) a bunch of writing, and I really felt like it was too late to do anything.

I haven’t met a single person here so far who I mind having my name.  I’ve been very fortunate.  But I do have some concerns about the future.  I don’t know how I would feel about people who live near me and know me in my daily life seeing what I choose to share here, and I’d really rather not have my current username.  A helpful WordPress video showed me how I could change my username and even have all my blog information transferred over to the new address, but it also said there was no going back.  And I don’t really know how that would affect things like having people who have already been kind enough to read my blog still be able to find me and having me show up on blogrolls and the blogging network.

So I’m going to do what I did when I first started blogging and just go ahead and ask for help.  Does anyone have any advice?  Is there a simple way to keep my current username from being associated with my blog and to still maintain all the rest?  It’s not like I have a big following.  Could I just put some kind of announcement on a blog post a while before actually making a change, or does something else make better sense?  Should I post something in the comments of the blogs of people who’ve been kind enough to comment here?  Is all this actually pointless, because now I’m officially connected to this name in webspace for all eternity? 

Any help would be greatly appreciated.  Thanks.

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