Holy Spirit

Posted on May 9, 2013 by lakelly

Beach walking on a sunny afternoon!

In Sunday School this Sunday, the kids and I talked about the Holy Spirit.  We likened it to the wind, talking about how you can’t visibly see the wind, but you can feel it and experience its effects around you.  You feel the wind on your face, you see it rustle the leaves on the trees and send dust swirling into the air.  The same is true of the Holy Spirit.  We can’t visibly see it, but we can feel it when we experience the love of others, we can see its effects when we care for each other, when we support each other through hard times, when we experience joy and peace in our hearts.  I love sharing with these children.  They are incredibly insightful and always let their inquiring minds put me to the test! I told them that I am most aware of the presence of the Holy Spirit when I am near Lake Superior.  The peace and sense of completeness I feel as I walk the shore fills me up.

After church today, I gave myself the gift of a long afternoon nap on the couch in the family room.  There’s nothing better than snuggling under the heavy, deep red throw (the boys fight for it when they’re home) and snoozing away some free time on a lazy day.  I awoke about three hours later (ahhhh) with the sense that something was different. Through still heavy lids, my wondering eyes saw….wait for it…SUN!! On the deck!!

Mike was hysterical, because I almost fell off the couch in my excitement. I jumped up and as fast as I could, filled my red backpack with my journal and sketchbook, camera and water, put my hooded windbreaker on, found my gloves and headband, grabbed Blue’s leash and Blue and I were out the door.  I heard Mike’s laughter as I shut the door behind me.  I was not going to let the joy of sun pass me by!

We trekked down the beach to the mouth of the Cranberry River.  I was snapping pictures as we walked.  Oh my gosh! Rocks – no snow – SNAP!  Holy cow! Look at the piles of new driftwood…SNAP! Oh, oh, oh there’s green sprouts of wild flowers under this dried beach grass…SNAP!  I felt like a little kid discovering new toys under the tree at Christmas time.  For me, these are the wonders that make me believe the Holy Spirit continues to work in our world.  These are the things that nurture and sustain me and fill me up so that I can give of myself to others.

When we reached the Cranberry River, we found a spot out of the wind to hunker down and just “be.”  Resting my back against a sandy knoll, legs criss crossed applesauce, as we say in preschool, Blue’s head nestled in the crook of my leg, we sat…and watched…and breathed.  The sky became bluer as we sat, strips of white clouds drifting past.  A pair of geese floated just off shore and a group of seagulls argued nearby.  As I breathed crisp, fresh air, I could feel the thrum of an ore boat that we couldn’t quite see yet.  I heard the voices of the children from this morning talking about the ways they feel the Holy Spirit in their lives, and I smiled.   Sitting there,  on the beach,  experiencing the gifts this lake has to give, and the lessons it has to teach, it was easy to believe that there is something far greater than I understand at work in this world.  People may call it many things and experience it in different ways, but for me, I call it the Holy Spirit, and I know that it’s alive and well on the shores of Lake Superior.

Here’s to walking and talking with you!

Linda

 

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A Moment in Time

Posted on May 7, 2013 by lakelly

 

Meet the next generation of hockey players in the Kelly family; Zach, Asher, and Keely, with Ziva waiting in the wings!  Katie reports that they descended on a sale at Play It Again Sports to outfit the boys, as Zach really really wants to play hockey like his daddy.  Since he may have a limited time when he can play more rough and tumble sports, they decided to give him the opportunity to play sooner vs. later.  And, when one plays….they all play!   They are very excited!

Ahhhh….To beat the “yucky weather crankies” this weekend, I went to the Garden House in Solon Springs and feasted on the explosion of color in their greenhouses.  Walking up and down the aisles of plants, breathing in the musky smell of damp black dirt, I reveled in the many shades of green.  I could feel some of the heaviness of the past bleak months begin to lift.

I like to buy my hanging plants from the Garden House because they always have unique combinations of plants in their baskets.  It’s also owned by the family of a good friend of mine.   At any rate, I came home with a trunk full!  I just couldn’t resist the promise of spring they harbor.  I only hope we can keep them alive and thriving until we can FINALLY put them outside!

Here’s to walking and talking with you!

Linda

 

 

 

 

 

 

 

 

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Kindness Chronicles

Posted on May 5, 2013 by lakelly

Gosh! How can it be the first Sunday of May already??

But wait! When May is here, there’s supposed to be sun in the sky and green stuff cropping up in my gardens…NOT SNOW and FREEZING RAIN!  OBVIOUSLY, God or whoever controls the weather, isn’t aware of the Kindness Chronicles!!

OK – I feel better now….

One of the very coolest kindnesses I received recently was the gift of a teeny tiny paint set from a friend in California.  It was “invented” by a friend of hers named Maria Coryell-Martin who is an expeditionary artist.  I call it my fairy paint set.  It’s just so tiny and cute! It’s about the size of a woman’s compact, very thin, and inside it holds 12 tiny paint tins that you can put watercolor paints from a tube in.  There’s a magnet in the bottom of the case that holds the little tins in place.  And there’s 12 extra paint pans so you can change out the color palette if you need to without wasting paint by dumping it out, etc.  Used with a waterbrush, the paint set is perfect for taking with you on the fly.  I’ve included a couple pictures below.  It was such a kind and unexpected gift and makes me want to keep learning about sketching and watercolor so I have an excuse to use this sweet little paint set!

Tiny little compact

 

Little paint pots held in place by a magnetic bottom

There’s a foster grandma that works at Bryant Elementary who never fails to tell me how nice I look, or how much she likes my hair…Especially during this winter that never ends, it’s been a pick me up each morning – even if I felt like crap! Thanks, grandma!

And always, it’s fun to receive calls from family and friends when I least expect it.  I’m not the greatest when it comes to calling people – I tend to e-mail – so it’s nice to hear familiar voices and know that they are thinking of us!

I try to remember to always pass on the kindnesses that are shown to me.  Whether it’s checking in with a friend that’s struggling, or offering to help at work when others’ workloads get heavy, it’s important to me to be there for other people.  I try to truly live by the idea that “to whom much is given, much is required.”  I have been so fortunate in my life and been given so many gifts and opportunities.  It seems only right to “pay it forward.”

How about you?  What kindnesses have you received this month?  What kindnesses have you shared?

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Interview Number One

Posted on April 16, 2013 by lakelly

April is Autism Awareness Month.  Mike and I talked earlier in the month about doing our small part of educating others about Asperger’s Syndrome by talking about how the disorder affects him, in particular.  We can’t speak for others on the spectrum.  We can’t presume to know how they experience life or deal with their differences.  All we can do is share what we know, what we are learning, and how we have made adaptations in our lives to accommodate Mike’s differences and my/others reactions to them.

It’s important for us, again, to let people know that we aren’t doing this for sympathy, to make people feel like our lives are harder than others, or to whine about the cards we were dealt.  There’s hardly anything we will talk about that other couples or families haven’t experienced.  With Asperger’s, things may just be experienced to a more extreme extent than “neurotypical” couples.  We have a good life.  For a couple living with Asperger’s, we have been incredibly lucky.  According to statistics, we shouldn’t still be together.  Many relationships in which one spouse has Asperger’s end in divorce. (Trust me, there’s been times when we’ve been close!!)  We were fortunate in that all the stars were aligned right for us in so many ways.  We’ll talk about that more in future posts.  But for now, here’s our first attempt at sharing what Asperger’s looks and feels like for Mike.

Linda:  Tell me your interpretation of how this all started.  How did we get to Asperger’s?

Mike:  Well, you were at a conference a year or so ago about autism.  The presenters were talking about Asperger’s Syndrome, and all of a sudden you had a hunch that that’s what was going on for me.  I don’t know if you had thought anything like that before. (I had – for a couple years.  I had mentioned to my Speech Pathology colleagues that I wondered if Mike might be on the spectrum, but I didn’t feel like I had enough information, or that there was enough information out there yet, about adults with Asperger’s Syndrome.)  You brought some information about Asperger’s home and we talked about it a little, then we bought a book about Asperger’s (Asperger’s from the Inside Out by Michael John Carley) and when I started reading it I asked if they had written the book just for me, because so many of the things he talked about were things I had trouble with.

Linda: Can you tell me what things jumped out at you as you read?

Mike: Things like not picking up on social cues.  I don’t always “get” what people are really saying with their expressions and body language so I miss the real meaning of their message alot.  Like, alot of times I know I keep talking when other people are ready to be done with a conversation.  And sometimes I have a thought and I say it without thinking first.  I know that I interrupt people when it’s not appropriate – mainly because you tell me I do!

Linda: So we were both thinking that there were alot of characteristics about Asperger’s that fit for you.  What was the next step?

Mike:  We talked about where we could go for a diagnosis.  The choices were between Mayo and the Fraser Clinic in Minneapolis.  The consultant you were working with in the district told you about the Fraser Clinic..  I decided we should go to the Fraser Clinic because it was closer and if we needed to go back and forth for awhile, that would be easier.  I had to call for the appointment.  It took me a few days to get to it.  It was on my “To Do” list for awhile.

Linda:  How did you feel about going in for a diagnosis?

Mike: I guess I thought maybe it would help us get to the bottom of something.  But on the day of the evaluation, I was a little anxious.  I wasn’t really sure if Asperger’s was the right diagnosis.  I wondered if ADHD wasn’t more accurate for me.

Linda: So we went through the evaluation.  You did some testing with a psychologist, and I did an interview with her intern.  After they conferred, they came back with a pretty definitive diagnosis of Asperger’s Syndrome.  How did you feel about that?

Mike:  At first I was kindof surprised that they could make a diagnosis after a relatively short session.  I mean, we were only there for a couple of hours.  But I guess there were certain things they were looking for, and I had alot of them.  Like, during a conversation with the psychologist, I missed alot of the social cues that she used to guide the conversation in different directions.  She said I did more talking about me (that’s called being egocentric) than asking about her.  I kindof took off talking about my interest in sailing and just kept going.  And I know I had trouble keeping the conversation going appropriately when the psychologist wasn’t putting in alot of effort.  I don’t always know how to do that small talk thing.  I think we were both kindof expecting a diagnosis of Asperger’s, but I was a little disappointed that they didn’t have any real suggestions for us.  I was thinking we would at least come away with an outline of things to work on.

Linda: So…has anything changed for you since we got the diagnosis?

Mike: I’m consciously trying to be more observant when I’m with other people.  I’m consciously working to make my brain focus on and pay attention to what the other person is really saying.  In the past, alot of time I think I was just hearing words.

Linda: In hindsight, does having this diagnosis help make things that happened in the past, from the time you were a kid until now, make more sense?

Mike:  Well, I think sometimes there were negative reactions because alot of times I didn’t get that when someone asked something of me it was a “need”.  I tended to think of it more as a suggestion, and that was frustrating for people.

Linda: Is that the only negative consequence you’ve experienced, do you think?

Mike:  There were probably alot of others (there were – but that’s for a future post), but I didn’t recognize them so it doesn’t really bother me.

Linda: Anything else that’s changed for you since getting the diagnosis?

Mike: It helped me understand that I wasn’t crazy, lazy or just plain rude. Alot of times I just didn’t understand why I did the things I did.  I never want to hurt anyone or to disappoint them or frustrate people.  But I know I do.  Now that I understand there’s a reason for why I do what I do, I feel like there’s some things I can change to make things better.

Linda:  Is this difficult for you to talk about?  You look like you want to run.

Mike:  Yeah, I guess it bothers me a little.  First, I want a cigarette.  And then I feel like I don’t know enough about this yet to answer your questions completely so it makes me feel restless – maybe anxious.

Linda: OK – let’s do a couple more questions and call it a night.

Mike: Yuh.

Linda:  Alot of the literature talks about people with Asperger’s Syndrome having special interests that they frequently get lost in.  Do you think you have any of those?

Mike: Oh yeah.  I would say computer games, logic or Sudoku puzzles, reading, watching sports and programs like NCIS.  When I’m doing those kinds of things, I feel more relaxed, my brain is busy and my body is less restless.

Linda:  How about sensory things.  Any of those issues that bother you?  Like, some kids I work with don’t like the feel of certain kinds of material, or they don’t like certain textures or colors of food…

Mike:  I don’t like to wear regular shoes and socks – I’d rather wear sandles whenever I can because my feet get too sweaty and I don’t like that feeling.  When I was young, I had to have the radio on or I couldn’t go to sleep – I needed that background noise.  I have trouble filtering out all the sounds around me.  Like when we’re at a restaurant, I have trouble concentrating on a conversation you and I are trying to have because I hear everything around me.  Then when we get home, I need to go somewhere quiet to sortof recover.  It takes alot of energy to try and stay focused.

Linda: One last question for now.  You’re 58 years old.  Why did you feel like it was important to get an official diagnosis when we had pretty much figured out on our own that we were dealing with Asperger’s?

Mike:  Well, I hope I still have alot of life left to live and if there’s things I can change to make it better, then I want to do that.

Linda: Sounds like a plan!  We’ll figure those things out one little step at a time, my dear!

Here’s to walking and talking with you!

Linda and Mike

 

 

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A Moment in Time

Posted on April 14, 2013 by lakelly

Thanks - by Mary Jean Ingbretson

I love to see this sign each time I drive by it.

An Easter Tea Party - by Jan Prevost

Drake and Makena visited Grandma Jan for Easter and were all ready for their Tea Party!

Oops! by Kate Kelly

I let Zach steer (in the yard) and this is what happened. After we let the kids ‘help’ (they filled the rut with kitty litter we don’t use), I pushed and Austen backed it out. The kids were so proud of both getting it stuck and getting it out because they worked so hard.

Hope you enjoyed a few moments in time from some of my family members!  Thanks for sharing your photographs, ladies!  I’m always looking for new ones to post, so keep them coming!

Here’s to walking and talking with you!

Linda

 

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Where Your Mind Goes

Posted on April 10, 2013 by lakelly

A Wandering Mind

When I’m traveling, I am always fascinated by the different billboards and street signs that I see.  I think they’re especially fun in the south.  I can’t decide if they’re really all that unique, or if they’re just not ones I see every day on my drive so they catch my eye.  At any rate, it’s always something I look for when I’m traveling.  And, after you’ve been driving for a looooong time, by yourself, things may seem funnier than they really are.

I wait for those times when I’m traveling alone.  Those times when you’ve maybe pushed a little farther in a day than you should, when you’ve maybe had a bit more caffeine than was really necessary…I think it’s incredibly funny to see where your mind goes – where my mind goes.

Here’s one of the best “How did my mind get to this place?” moments from my recent trip back from North Carolina. I’ll apologize ahead of time if my ramblings offend anyone.  I’m just sayin…this is where my mind went.

I love the last little stretch of 35N in West Virgina that’s just a two lane road winding through the “back country”.  Old farm buildings dot the landscape, horses lie serenely in the fields along the road, and just before you cross over into Ohio, off to the left, is a cute little white Presbyterian Church, Pliney Presbyterian Church, that basically shares a parking lot with the Adult Video Arcade.

A little farther down the road, just outside Chillicothe, Ohio, there’s a small sign for Jesus in the Hills Camp.  You turn left on Limerick Road to get there.  I had visions of Jesus and the disciples sitting around a campfire late at night, tilted back on their lawn chairs with a beer (or maybe wine would be more appropriate), their robes fluttering around their legs, sandals dusty, pitching sticks into the fire and devising biblical limericks.  Something like:

So God called this fellow named Moses,

To help the world know that He chose us.

Mount Sinai was the place,

To fix the whole human race,

But that Aaron just had to expose us!

Not long after that, on the right, was Dye Lane.  I went from Jesus and the disciples to picturing all the little ladies from the surrounding farm communities lined up in salon chairs under dryers on this dusty country lane.  They’d be reading outdated copies of People magazine and gossiping while Mabel (or is it Celeste?) the local beauty shop owner primped their hair for Easter Sunday.

On Easter Sunday, they’d dawn their holiday best, pull on their short white cotton gloves (does anyone wear those anymore?), gather up their patent leather purse whose gold clasp snaps shut authoritatively, and slide its short handles neatly into the crook of their arm.  Then they’d venture south to Pliney Presbyterian Church where they’d rather smugly “tsk tsk” about the Adult Video Arcade next door while secretly wondering what’s behind its doors.

You don’t even WANT to know where my mind went when I pictured Jesus and the disciples getting bored with the whole limerick thing, heading out for a walk, and coming across the little ladies on Dye Lane!

Yup – my mind it does wander when I’m traveling.  It’s probably good that I don’t do it alone too often!

Here’s to walking and talking with you!

Linda

 

 

 

 

 

 

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Kindness Chronicles

Posted on April 8, 2013 by lakelly

I seem to hit and miss with the Kindness Chronicles on the first Sunday of the month (sorry Ms. LaFazio! :) ), but I figure if I get CLOSE to the day, I’m good to go!

Just as a reminder, the Kindness Chronicles were started by Jane LaFazio to recognize kindesses that have been extended to you and as a reminder of how much simple kindesses offered to others can make a difference in people’s lives.  I have a whole bunch of kindnesses that I’ve been offered recently, and I wanted to take this time to share them.

First, a huge shout out goes to my daughter-in-law Katie.  When I returned home following Mike’s evaluation at the Fraser Center, she was the first one to connect with me to see how things went, how I was feeling, etc.  I had come home alone, as Mike went on to a Fire Training Conference following his evaluation, and I was feeling rather sad.  It meant so much to have Katie connect and let me know that she cared.

Many people have been looking out for us recently and wondering how they can help.  My friend Diane called to let us know that there were some programs coming up on NPR on Asperger’s Syndrome and thought they might provide us with more information.  We truly appreciate that, Diane!

My sister Betty happened to be in Superior late Thursday afternoon, and she texted me to see if I could meet for coffee on my way home from work.  We had a lovely visit as well as dinner together.  It was such a treat in the midst of a busy work week, and a dose of family always makes me smile.

Yesterday, my friend Nancy made a coffee date with me for after work.  We met at the Red Mug, sat in two cozy chairs in a corner with lattes and cupcakes, and talked and talked.  When we finally took a breath and looked up, we realized it was 7:50 PM, we were the only ones in the joint, they were closing at 8:00.  We’d been talking non-stop for four hours.  There’s no one I’d rather lose track of time with than you, Nanc!

Susan, a consultant we’re working with on an autism grant through our district, provided me with contacts for individuals in southern WI that have started support services for adults with Asperger’s and their families. I am so lucky to have the contacts that I have, and grateful to Susan for giving us a place to start so we don’t have to reinvent the wheel.

After hearing that my grandson will have to have cardiac surgery soon, Liz, one of the therapists that I work with, offered to help with the boat-load of evaluations I have going right now so that if I need to be gone, I won’t need to worry about them.  Liz works in one of our biggest schools and has the largest caseload of any of us, so her generosity was extra touching.

I am the recipient of so much kindness in my life, I’m not sure I can ever do enough to “pay it forward.”  However, I have had a really fun week of getting students and families set up with assistive technology tools in our district to help students more successfully access curriculum materials. I am actually at a place, now, where I feel like I know enough to truly help make a difference for them. I don’t know if this counts as a “true” kindness, because I get paid to do it, but I am so passionate about getting tools to students that will help them be more successful, I’d do it for free. (Just don’t tell my supervisors that, OK??)

I’m participating in National Letter Writing Month with a bunch of folks on-line.  In an effort to maintain “real” mail in the midst of all the technology we use, people from all over are spending the month of April sending each other letters, beautiful cards they’ve made, etc. through the mail.  It’s a fun way of connecting with people you don’t know and sharing a bit of yourself in the process.

Kindness.  Just a little can go a very long way.  What kindnesses have come your way this month?  What kindnesses have you offered to others?

Here’s to walking and talking with you!

Linda

 

 

 

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A Moment in Time

Posted on April 7, 2013 by lakelly

Sunday brings another “issue” of snapshots reflecting A Moment in Time.

Looking Up by Linda Kelly

In the photography class I’ve been taking (and falling rather behind in) we’ve been tasked with taking photos from different perspectives.  Recently, the lesson was, look up, point your lense up – see what you find.  This is from a store front in Bayfield.

Hanging Out by Mary Jean Ingbretson

My sister Mary sent me this photo of a frequent visitor she has at the feeder outside her kitchen window.  The woodpeckers love her homemade suet.  I suspect he’s looking for some!!

A Different Perspective by Linda Kelly

Again from my photography class, looking at “regular” things from different angles.  This is our piano at church with which Mary H. makes beautiful music.

 

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Musings from the Road

Posted on April 6, 2013 by lakelly

Goin' to North Carolina!

Over my spring break, the last week of March, I drove to North Carolina to spend time with Austen and Katie and our grandbabies.  Austen had just had hernia surgery, Katie and Zach had various medical appointments, and I went to try and help out a bit while I could.  Mike stayed behind to tend to the animals.  We were both ready for a break from each other.  The whole Asperger’s thing was becoming too much of a focus for us.  We just needed time to “be” on our own for a bit and I wanted to challenge myself a little by making the drive on my own.  Sometimes, life just gets too “same old”, “same old” and I feel the need to stretch myself.

Mike and I are great traveling companions – I drive, he navigates.  But I love to travel on my own as well.  It gives me a chance to clear my head, poke around into nooks and crannies along the way that pique my interest, and to blast the music I like all along the way.  The trip was awesome!  The only part that was a little hairy was the last leg in the mountains, on my way to Katie and Austen, where I encountered driving snow and sleet that a WHOLE lot of people apparently don’t know how to drive in!!  There were cars going off the road all over the place.  Being a Northlander, I just took it slow, I still had my snow tires on, and I had no problem.  I had great fun hanging out with Katie and Austen and got to play for hours on end with my grandbabies.  What more can a grandma ask for?

I love the little adventures or “insights” I have when I travel.  Here’s just a few that I thought I’d share from my trip:

1.  At a rest stop in Indiana, I parked next to a guy in an older white van who had an air compressor in the back seat that he used to pump up his back tire.  I was grateful that I didn’t have to worry about something like that.

2.  Big burly truckers often travel with itty bitty dogs.  It’s really hard for me to keep a straight face and take them seriously.  Especially, when one of those itty bitty dogs is an apricot miniature poodle named Spike!

3.  How smart is it, for a woman obviously traveling alone, to have a vanity plate that reads IM4SL?? (NO, it wasn’t ME!!!)

4.  When you stop in West Virginia and have WI vanity plates that read West VA, you have some very interesting conversations!!

5.  Listening to Science Friday on NPR, I heard the phrase “usurped by people wearing dresses at the Vatican” and it made me laugh.

6.  I learned, from a billboard in the south, that “When You Die, You Will Meet God.”  I feel alot better now, because I know there’s been a lot of questions about that in other people’s minds about me!

7.  I wonder what it’s like to go to a church that pretty much shares a parking lot with an Adult Video Arcade? (More about that in a later post.)

8.  And, last but not least, 55 MPH means absolutely NOTHING in Illinois!

Here’s to walking and talking with you!

Linda

 

 

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Well, &$%#, What Now???

Posted on March 21, 2013 by lakelly

One of the first things I did after we left Fraser Clinic, where we received Mike’s diagnosis of Asperger’s,  was to text Spencer, our oldest son.  ”Done. We’re positive :) ”   We had had dinner the night before with him and his girlfriend Becky, and I knew that he was waiting to hear what we found out.

Poor kid.  It wasn’t fair to him to be so flippant about this diagnosis.  It affects him too. I think I was  just so relieved that it was over, I was feeling an initial giddiness.  I was relieved that my suspicions had been right and I hadn’t led my family down the wrong path, and probably a bit on the edge of hysteria as the significance  of this diagnosis for my family began to filter onto my shoulders.  I’m sorry Spence – I could have done that in a much more appropriate way.  I’m trusting that you understand how my humor works….and my heart…

Spencer’s text in response to mine was, “Good?  Congratulations?  Not real sure what fits here :) ”  I burst out laughing.  Oh, how I love my son!  I’m sure his will be the first of many “how do I respond to this? to them?” quandries for the people around us.  Do they treat us differently now?  Do they talk about the diagnosis or ignore it?  Do they feel sorry for us? Do they feel guilty because the thought “thank goodness it’s not us” crossed their mind?  Do they sit back and think, “nooooowww it all makes sense?”  In response to Spencer’s question about what fits here, I texted “How about we go with ‘Well #$%&, what now??’”  We agreed that was the way to go – so it’s OK if everyone goes down that road with us for awhile :)  We’ll all figure this out as we go.

Actually, “What now?” is a really good response for right now.  Mike and I went to the Fraser Clinic with the expectation that we would receive a diagnosis of Asperger’s and the hope that they would be able to provide us with resources and strategies (that we weren’t already aware of) that could make being in this world a bit easier for Mike and in turn for our relationship and for his relationships with others.  We were told that what we needed to do was return to our area and find people that could work with us on the various skills they had outlined for us.  When I asked about the best way to find professionals who were experienced with working with individuals with Asperger’s Syndrome and their families, Val, who interviewed me, smiled rather apologetically at me from across the room and then looked down at her notes.   Sue, the psychologist, literally threw her hands up and said “that’s a good question!” and proceeded to tell us (in a slightly rushed – she had another appointment – breathy, chirpy voice – oh, oh, I recognize this routine) that there were few people who understood how to work effectively with children with autism, fewer when it came to adolescents, and even fewer when you got to adults because there’s still such a lack of information “out there”.  Her best suggestion was to go back to our area and ask the counselor and psychiatrist we’ve worked with in the past if they are willing to learn more about autism/Asperger’s  and then use their professional skills to help us work on the skills we need help with, using their new knowledge about Asperger’s Syndrome.  So…..pay someone so that we can teach them what we know and how to help us??  Hmmmmm…

At first, I was angry. Mike looked disheartened and that broke my heart.  Stupid psychologist!  If I could have gotten away with it, I probably would have stamped my feet and kicked a chair just for emphasis. (Probably not the smartest thing to do in a mental health facility!)  With my background, I know how little we still know about autism – particularly Asperger’s and particularly in adults.  I wasn’t surprised to hear what Sue had to say about the lack of services outside specialized metropolitan areas, but even so…

After that initial burst of anger, came a profound sadness – and frustration.  I wanted to cry – hard – throw myself on the floor, kick my feet and pound my fists, cry.   I had so hoped that we could find some answers for Mike – for us – for our family.  He is such a good man.  We are a good team. We are a good family.  But sometimes life is much harder for him –  for us, than we wish it was. Hard in ways that are difficult to explain if you haven’t “been there.”  (Oh waah – like life isn’t hard for other people, right??)

After I cycled through the angry, sad/frustrated pieces, overwhelming weariness – a weariness that has been hovering for some time now, descended.  Mike looked resigned.  Our answer was, we are the experts.   We were told that we know more about Asperger’s than most professionals out there because we’ve been living it for a whole lot of years; that we are already using many of the strategies that people would recommend because, with my background, we’ve implemented them “naturally.”  (Naturally?? Are you kidding me?? Do they know how much work we’ve put into this??) I suppose we should have been encouraged to hear all of that.  I guess we were.  But we also know that there are many things we still need to address in our lives and sometimes it feels like we’re running out of “tricks” and ideas for ways to address them.  And we’re being told we’re on our own?? Bad words, bad words, bad words.  OK…No need to panic…just remember to breathe…just breathe…

We know what we need to do to move forward.  We now know that we need to find or create our own resources.   We can do that.  I have good connections with people that can help us put things in place, and I know how to make things happen.  Mike is willing to open himself to learning new strategies that can make his life, our life, and the lives of those who might come behind us, more manageable.  We’ve got our work cut out for us, but we can do this.  This work can help us make a difference not only for ourselves, but for others.

Right now though, we need to let this all sink in.  We need to acknowledge that living with Asperger’s takes alot of energy on both our parts. And we need to rest.  Rest our bodies and our minds.  Then, one little step at a time, we’ll move on to the “Well, %&#$, what now??” part.

Here’s to walking and talking with you!

Linda

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