Saturday, August 21, 2010

To all the friends I called before

We had friends.  We had quite a few friends actually.  It wasn't uncommon for us to have parties at our house.  We'd often spend a ridiculous amount of money on food and beer just to enjoy our friends in our home, together.  My husband and I met through friends and our friends were an integral part of our early days as a couple and, later, as a married couple.

Then life happened.  First, it was infertility which turned us inward.  Then it was our first child, a move to the suburbs, and followed by twins.  Our world of seemingly carefree, fun times was over and we struggled to get through each day and to make it until the next pay day.  We couldn't afford to have parties or babysitters.  The stress of raising an undiagnosed child with autism while caring for newborn twins made us turn even more inward.  To get out with the kids opened us up to stress (since we were incapacitated by our oldest son's unusual responses to the world) and  for us to take turns going out alone only put more stress on the one who stayed home with the kids.  There was no way to balance our role as parents and our desire to enjoy our friends. 

Then we moved out of state from Texas to Utah.  Since, by the time we moved, we rarely saw our friends while in Texas, the move to Utah only created a physical distance from our friends.  Thanks to social networking sites, we can keep a tab on many of our friends and have been fortunate to maintain our connection but the days of chilling together while drinking good beer, talking/debating about music and idle chit chat are over. 

I miss those days.  I miss my friends.  I feel I owe them an explanation for our distance but I'm not sure where I would begin.  I guess I would want them to all know that we do love them and we cherish our time together.  We will continue to try to keep up with their lives via Facebook and other means but we will likely continue to suck at emailing, calling or anything more personal than saying we "Like" their status or, occasionally, writing a brief comment on their status.  I wish we could do more.

Another sort of distance that has been inevitable although less apparent is that of how our world's are so different.  I'm sure for many of my friends I appear obsessed with autism.  Facebook status after another regularly include the "a" word.  I agree that I am obsessed.  It is such a huge part of my life these days that I feel I'm often swimming in it.  With two children on the spectrum, we are affected by autism the moment we wake up until our last child falls asleep (and then that's when I do research that I couldn't do on autism while they were awake!)  Although I try not to make all my FB statuses about autism, I'd be lying if I didn't admit that it is what is on my mind. 

For those not living with autism, my statuses must seem dreary, redundant and even boring.  I understand.  Prior to having autistic children, autism was a mild curiosity to me.  Now that my children are affected (positively and negatively) by it, my heart and soul can't help but jump in and attempt to understand it for each child's sake and for our family as a whole.  This is my life's calling.  My darling babies who call me "Mommy" and rely on me to make their world a safe, accepting and loving place need me to focus on autism - not just  because of its challenges but because I want to help their beautiful souls to thrive and to share their uniqueness with the world. 

There may be a time when I can chill out, when I can shift my focus to other things.  For now, though, less than a year after my oldest's diagnosis and only a week since our youngest's, it's my persevere.  For all my dear friends who may ponder how much I have changed, one thing I would want them to know is that my love for them hasn't faltered.  I just have a job to do which requires every ounce of my energy and, unfortunately, I am incapable of being the kind of friend I would want to be.  Hopefully, one day, our friendships will get re-energized and renewed.  Until then, though, I wish only the best for all my compadres, and I want them to know that I think of them all often.

Tuesday, August 10, 2010

Margaritas and manicures

Yesterday, I gave myself an assignment which I nearly failed. It had been another stressful day made more difficult by my youngest having a cold.  There were moments where I felt like my head would explode such as when my youngest repeatedly insisted that I pick a new show for him to watch.  When I'd ask what he wanted, he'd say, "the one I want."  I'd try it a different way, "Tell me the name of the show you want to watch."  He'd reply, more agitated now, "the one I want to watch."  I'd then pick a random show and he'd flip out because it wasn't the show he wanted to watch - the one I was supposed to already know. (For those less familiar with autism, this is a good example of his lack of theory of mind.  He does not understand that I am not thinking what he is thinking.)

By the time my husband came home, I was mumbling incoherently to myself - at least that's how it seemed.  I grabbed my gym bag and made a run for it.  I took out some of my frustrations and stress on the equipment, focusing my negative energy on each rep, "1, 2" as my feelings of frustration and hopelessness turned to anger and sadness and, finally, to kinetic force.  After releasing a lot of the stress, I rested in the spa and then the sauna.  Feeling cleansed so to speak, I left the gym with time that I could use for whatever means I desired (a whole hour before I had to return home!)  In an effort to help me nurture myself (and thus to help me through the grief I am feeling about my youngest son's recent diagnosis), I challenged myself to do something totally stupid and selfish:  I had to go and buy something girly. 

I went into the store considering buying new lipstick and came out with a french manicure set.  Go figure.  Of course, it took me ages to pace back and forth down the makeup aisle to determine what was the most cost effective yet desirable thing to purchase. For those who know me, I'm not a major girly girl.  Since I have had children, I am even less of one due to lack of time, energy and funds.  Doing my nails is such a luxury (paying someone else to do them is a luxury which I can't afford) that it made me giggle.  It's so frivolous compared to what my energy is normally directed toward that I felt almost silly.

I wasn't done yet though.  I had also decided that I wanted a margarita.  Having grown up in Texas, I am quite fond of good margaritas.  I know margaritas are available nationwide but they still remind me of home.  Before I could talk myself out of it, I ran in the state liquor store and grabbed myself a mix.  It would have to do and it did.

After having released my stress at the gym and entertaining myself with an almost childish desire to play dress up, I sat back and watched a very entertaining show with my husband.  The two of us giggled like kids while I sipped at my frozen margarita while occasionally admiring my new nails.  It was a mini-vacation and we have to remember to go on them as often as we can.  Of course, my youngest did show up during the second show but, with my patience and compassion restored, I welcomed him into my arms and held him as he slept peacefully.

Sunday, August 8, 2010

Spectrum of emotions

Little did I know that when I first started this blog that one of my twin boys would later be diagnosed with autism.  Ten months after my firstborn child's diagnosis, we find ourselves again trying to process the wide range of emotions that such a diagnosis brings about.  From denial and skepticism to relief and mourning, my husband and I each are experiencing emotions and not necessarily the same ones at the same time.  Unlike when our first son was diagnosed, though, we feel a little more equipped to handle it and have a better idea what we're facing.

As I have stated in previous posts, we have had our concerns.  As more proof to the concept that "if you know one child with autism, you know one child with autism," our sons have different presentations of the same condition.  I am truly better able to appreciate that autism is just a part of who my children are and not their entirety and that their form of autism is just as unique as they are as individuals.  Despite their differences, though, my boys' distress and frustrations and our struggle as parents to help them is the same.  When we found ourselves grappling at trying to understand our third son, we began to recognize the same emotions, concerns and frustrations we had had with our firstborn child prior to his diagnosis.  Our instincts told us that there was something similar going on with our third child and that we owed it to him and to our family to see if there was any merit to our feelings.

Heading into the evaluation, I found myself preparing for it by writing up a document of all of our concerns.  I also made sure to clearly spell out all his behaviors which were contradictory to an autism diagnosis.  Perhaps I was secretly hoping that the fact, for instance, that my son makes good eye contact would rule out autism.  I'll admit that I was hoping they'd say he just had OCD or an anxiety disorder.  Of course, even though the diagnosis is helpful (so that we may be able to help him better), my son is who he is regardless of his neurology.  He is still my little, darling boy who delights me with his funny, energetic and mischievous, little self.

As a family, we are now shifting from the idea of having one child with autism and two neurotypical (NT) children to 2 children with autism and one NT child.  Of course, now that our third has been diagnosed, I can't help but wonder if we should have our 2nd son evaluated but I seriously can't go there right now in my mind because that is just too much for me to handle.  Additionally, at this stage, we have not had the same concerns with our 2nd son that we have had with our other boys.  I can't help but worry about our NT son and how having two brothers on the spectrum will affect him.   Thankfully, the boys all love each other despite their frequent battles and, despite the difficulties, his brothers are hysterical and will enrich his life as much or more than they will challenge him.  Certainly, we have to make sure all of our boys know that they are each special and valued and that, autism or not, our boys have an equal place in our hearts.

Tonight, I sang my third son to sleep because he needed me to "teach him how to close his eyes" and to "make sure the tears don't get on his face".  One of many requests that he feels that only I, his mother, can fulfill.  Sitting near his bed, I kept my eyes open so his could close and I sang to my sweet, little boy as he slowly fell asleep.  Helping a scared child to go to sleep is certainly not unique to any parent and I'm reassured that I can do such things for him and to help him feel safe, loved and at peace with the world.
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