Lovely Chat

Yesterday I was able to have a nice chat with a fellow nurse at summer school.  Her son is an autistic teenager.  Not a great combination.

I was able to express my feelings/frustrations about living with a husband with AS, and I finally felt like someone understood me.  She understood the joy and heartache of living with someone on the AU spectrum.  

My friend told me that her son changed her heart and made her a better person.  That's how I feel about Matt.  His way of viewing things and his sweet, thoughtful heart have made me a different and much more compassionate person.  

Feeling that there is someone who understands what is so difficult, and also so joyful, about your life is a gift that I'm so thankful to have. 

see, this is why I shouldn't have a blog

I notice that it has been quite a long time since I've "blogged."

How am I really supposed to offer practical insight to living with a husband with Asperger's if I don't blog about it?  I recently started reading several books about being married to a man with AS.  So far the best thing I've read is that I will be likely to maintain some of my independence due to a partner with AS needing space.  I have had almost the opposite experience, but maybe I can introduce this "normal" AS trait to my husband.

I'll have to give that a try.

maybe my mini-vacation was a mistake

Have you ever had an emotional breakdown?  Even a small one?  Maybe you've cried with some constancy in public?  Maybe you've cried over chips at Don Pablo's? or pancakes at Cracker Barrel?   

I have done most of these things in the last year.

This weekend I met my very best friends for a 30th birthday celebration and the emotional breakdown began.

I was so, so petrified of leaving my husband for the 48 hours I was scheduled to be gone, that I was paralyzed and very nearly canceled my trip.  But because I am so, so very isolated, I decided to take a leap of faith and head out of town for a mini-vacation.

This may have been a mistake.

Yes, I had a "fun" time crying all weekend with people that are my favorite people.  Yes, I feel reconnected with several of those people.  Yes, I finally got to tell my best friend who lives less than an hour from me that she has done a horrible job supporting me in this new-found (is that hyphenated?) diagnosis and state of my marriage. 

All good things, right?

Even though I believe the experience to be the beginning of me letting go of a lot of things, I was greeted on the last morning with my friends with the knowledge that my husband had not gone to work the night before due to paralyzing panic/depression, and that he was just about to fall apart.  After listening to my wonderful husband cry off-and-on for about 15 minutes and only seem somewhat happy after talking to me, I wondered to myself if it was worth me going on this tiny vacation.

I felt as if all of my worst fears were confirmed.  I felt a tremendous sense of dread in coming home.  But you know what I don't understand about myself--I did not tell my friends what had happened.  Friends that I sat up with until 1 o'clock at night, which is REALLY late for me because my bedtime is 9:30, trying to reconcile feeling isolated and scared and trying to get rid of all of the irrational fear.

Maybe I wanted everything to be okay.  I kept telling my husband that everything would work out, and maybe I wanted to believe that myself.  Maybe everything is okay and I'm making too much out of a minor setback.  Maybe I need to relax.

But as I'm sitting here taking a break from taking care of my husband, I wonder if everything is going to be okay.  And I wonder if I will ever get to relax and enjoy my life with my wonderfully creative husband.

Yikes.  That's depressing.

I'm off to plan our summer road trip and attempt to iron out a schedule even a man with Asperger's will be happy with.

freezer section vs produce

Where do you start your grocery shopping routine?  Do you start in the frozen section? the produce? pantry items?  Do you go up and down every aisle?

If you're partnering in life with a person with Asperger's syndrome, I'm almost certain there is some type of routine that is followed.

Our routine begins in the frozen section.  I don't even really know why.  Why would we start with the most perishable items?  I do know that routine needs to be followed, even if ice cream is involved.

Last week when we journeyed to the store I was on the hunt for caramel vanilla ice cream.  I was wanting to switch up our routine and start in the produce section and work backwards through every aisle, finally ending up in the freezer section with my wonderful caramel ice cream.  I knew there would be resistance to this change, but I did not want to end up with caramel vanilla soup in our grocery cart.

I see three options here:

1. End up with caramel soup.

2. Bring up the idea of change quietly, as if I'm expecting it to be a problem.

3. Bring up the idea of change boldly, as if I'm not expecting a problem.  

I chose option #2.  Not a good choice.  This choice always leads to the most resentment.  I just want to speak boldly because switching things up is a part of life.  Flexibility is required.  

That's the real difficulty in living with someone living with AS.  How to approach change without being insensitive and still maintaining your own identity.  If you consistently change all that you want to fit in with someone else's view point, you are eventually going to lose your mind.

That is the heart of what I am trying to figure out.  How do I support my husband and not turn into a shell of who I once was?

If anyone has an idea, please feel free to share.

The kicker is that after all of this internal debate/resentment/frustration, the freezer section was closed for an unknown reason and I am without my favorite treat.

why the blog?

Why the blog, you ask?  Why now?

I am attempting to create a guide to living with and loving someone who is living with Asperger's Syndrome.  Maybe by doing this, writing this, expressing these thoughts, I will come to a better understanding of my husband and myself.  I have been married to a man with Asperger's Syndrome (AS) for almost 3 years.

Marriage is difficult.  Everyone talks freely about that.

What you don't know--what no one talks about--is being married to a partner with AS.  I think that's because no one really was prepared to deal with what happens when kids with AS grow up.

Maybe now that conversation can begin.  Because I need it to.  Because the prevalence of Austism Spectrum Disorders, including Asperger's Syndrome, is on the rise.

These kids are going to grow up.  They are going to have adult relationships.  Maybe they're going to get married.  We need a guide to help us understand how our significant others/spouses think and how to relate to them.

Maybe no one will read this.  Maybe this is all an exercise in on-line journaling.  Why don't I just buy a journal?  I've done that.  What I'm hoping for is being able to provide someone else struggling with living with someone with AS some comfort/insight/understanding.

And maybe, just maybe, I want to know that someone might read these thoughts.  Because, let's be honest, maybe I just need to do a little venting.

More later when I figure out what more to say.