Dear Diary

by Karen, Confessions of An Asperger’s Mom

Warning: This Post is in exercise in self-pity.

I’ve been a really strange mood lately.  I want to be alone.  I don’t want anyone talking to me because I’m afraid I may bite their head off.  I don’t want anyone asking me any questions about what I’m doing…what I’ve been doing…what I’m supposed to be doing.
Yet, when I am alone I’m still not particularly happy.
I am full of thoughts of self-doubt –constantly questioning my parenting decisions.
I am feeling bad about what my kids are facing.
Feeling guilty that the latest medicines that we are trying with Blue -are not working the way that I hoped they would.

I am so happy with my blog and my facebook community.  I love the work that I am doing in helping others feel less alone.  But then I start looking at our financial situation and all of the things we can’t do because I don’t bring in an income, then I start with the guilt.  We are stuck in the small breaking-down, falling apart house, because we don’t have a second income.  I am driving the 10 year-old car with all of the funny noises, because I haven’t done anything to change that.  I am writing and doing what I love, but I can’t brush away the thoughts of feelings of, you need to get something published.
You need to be making an income.
What the hell happened to you?
You used to be so independent! 

I start thinking about my friendships.  I am blessed to have a lifetime of friends all across the miles, from West Virginia, to California.  My best friend lives a few hours away in Houston.  I love her.  She is my sanctuary. Literally, she provides respite for me every couple of months.  She is the one person that can say anything to, without fear of judgement and she can do the same.  We can talk and text message every day with our most hideous, most ridiculous thoughts and feelings and then laugh and make jokes about them. Then days can go by with no contact, but I never doubt our friendship.

I have extremely close friends in California where I grew up.  I have friends that I have known since I was in middle school, high school friends, friends from my early 20′s and so on.  I am proud of these friendships…how no matter how much time goes by without contact, when we do talk or see each other, it’s as if we just got together yesterday.  There is no animosity about the different directions our lives have taken and how little time we have to get together or call each other.  I love, value and treasure these friendships.

Most of my girlfriends from L.A. have at some point taken time out of their lives to come here and we have great visits together.  Or when I go there, we must see each other and our time together is just…like home, warm and familiar.

Then I have my virtual friends.  I have developed some great friendships through blogging and facebook.  People who think about me…send me special notes of love and support.  People who make me smile on an almost daily basis.  Women who get EXACTLY where I’m coming from because they too are parents of kids with special needs.  I can make quick contact with them when it is convenient for me from my laptop or phone.  In fact, this ability has made it so convenient that I seldom actually have conversations on the phone.  When I do talk on the phone, I am almost always interrupted by one of my kids, my mother, my husband or even by another phone call…like from the school.

I have somehow let my friendships with local friends dwindle down to next to nothing,  which I feel really guilty about.  I wonder if I’ve lost these friendships.  Living in Texas has been the only time in my life, where I have actually lost friendships and been disappointed by people who I believed were friends. Sometimes I wonder if it is connected to being a special needs parent.  Some people don’t get-it…don’t want to get it…get sick and tired of hearing about it.

I have a group of friends I used to entertain all the time here at the house.  We would eat, drink, laugh and talk into all hours of the night.  At some point Blue would become extremely stressed out and ask me,
“When are they leaving?  It’s time for everyone to go home so I can go to bed!”
At which point, I would say, “They aren’t in your bedroom.  Your bedroom is upstairs.  Just go to bed.”
“I can’t!”

So slowly the parties have slowed down.  The invitations have slowed down.  Lives have taken different directions.  Friends have had babies, which certainly changes the dynamic and trajectory of your life.  Others have been promoted on their jobs, family dynamics have changed where both spouses are now working outside the home, which means that time for friends and entertainment has changed.

But when I’m alone and in deep thought…I question myself.
Did I do something or say something? 
What happened to our friendship?
Why am I so paranoid?
I’m a good friend…when I have time to be one.

I am now taking care of my mother who is living with me.  Though she is only 72, and has relatively good health,  she still depends on me to help her take care of all personal business, take her to all of her appointments, both medical and otherwise, take her shopping and entertain her at least once a week.  Otherwise, she would never get out of the house.  This takes away from my time to get together with girlfriends.

I am no longer going to workout on a regular basis, which means I don’t see my Y -workout girlfriends as often.  We do get together every couple of months for lunch or coffee and catching up.  I joined another local recreation center, which is closer to home.  Yet, I can’t seem to make it over there with any sense of regularity.

The last time I had lunch with my workout girls, they asked me to come back to the Y to our Yoga and Zumba classes.  I really want to, but as summer approaches, I doubt seriously if I will have time to work out regularly.

So basically,  my life is totally out of balance and I have to figure out a way to somehow close some of these gaps and get my sh*t together.  All of this while the summer is approaching and I have to figure out ways to keep the boys busy and away from each other as much as possible.  I’m looking at camps,  therapists, social groups and vacations.
Oh yeah…and then there is the house and all of the many little projects that need to be done around here.
It all seems so impossible.
I guess I just have to make a list and try to do one-thing-at a time…
one-day at a time.
I wonder how many days I have left where I can say that?
Life is short and yet it seems to be going by so fast!
If only I wasn’t such a scatter-brained, unorganized, discombobulated mess.

**********

I am a full-time mother of 3 boys (4 if you include my husband).  The boys are ages 24, 16 and 13.  Both teens are on the spectrum. My 24 year-old is thankfully out of my house, but unfortunately, about to be deployed to Afghanistan.  I have been advocating for my sons, with doctors, schools and therapists since they were toddlers. I run an interactive Facebook community https://www.facebook.com/pages/Confessions-Of-An-Aspergers-Mom/113171498759099?ref=tn_tnmn, where those in the virtual autism/Asperger’s community can come to share information, laughter and vent with one another. On my blog I write honestly and openly, often using humor to share the reality of our life. I want the world to understand and accept autism, instead of judging it from a point of ignorance. If that means getting naked for the whole world to see…then so be it.  Hopefully…you won’t laugh too hard.

This post was originally published HERE and used with permission.

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2 Comments

Filed under Remembering to Breathe

2 responses to “Dear Diary

  1. Oh, wow, I know I don’t know you, but I swear you could have been writing about me. The only difference is my mom is not living with us. But, just yesterday I was beating myself up for not working and bringing in an income–which we desperately need so we can fix up our falling down house and so we can replace our very old vehicles. I don’t know how I could do it, though, with the kids. My son would probably fall apart and regress terribly if I sent him to daycare–he can barely handle school.

    And sometimes I feel like making friends requires skills I no longer have. I have had so many disappointments here with friends–you’re right: some of them just do not understand.

    I know what you’re feeling. At least I think I do. I won’t give you any advice, since I am clearly not qualified to do so. But know that you are not alone.

  2. Just yesterday I left for an early AM appt. for an opportunity to start making some $$. Well, the notes back from school, just for that minor disuruption to the daily routine, to be at grandmas for 1.5hrs before school, sent the entire household in a whirlwind of a mess!! Geez!!! that’s what I get for EVEN trying… so yes, we’re described here to the Tee ± and then some! Chin up ladies and fight the good fight!

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