Thursday, May 20, 2010


My son has always loved music, particularly classical.  By the age of three, he was already able to recognize pieces by Mozart, Beethoven and Vivaldi.  He can't sit still when listening to music as his whole body seems to participate with it.  Thanks to his lack of concern about how he might appear, he dances as one would in a house alone without any chance of being seen.  That's a sort of freedom that I envy.

Today was a very volatile and powerful day because it was filled with intense extremes of gratifying pleasure and gut wrenching sorrow and anger.  The beginning of the day was routine (no surprise there since routines are how we survive).  All the children went to school at various times of the day.  By the afternoon, everyone was getting tired and rundown, including me.  I found myself running around like a madwoman at around 3:00 when I realized that I had a ton of work to do because we were going to a rare treat in the evening:  a free concert by the Utah Symphony and the Utah Opera for children with autism and their families. 

From my trying to wash clothes so the boys would have decent pants to wear, buying a tie and shirt for one of my 3 year olds who has been begging for one, cleaning up bathroom accidents, trying to convince one whiny child that he would actually enjoy the symphony, to breaking up numerous fights over sharing a new toy, my calm began to crumble.  Twitching with anger and frustration, I stormed out of the house and into the farthest place in the backyard that I could go after my oldest, the one who is autistic, told me he'd rather stay home and play on his computer.  I was worked into quite a lather and my poor husband tried to talk my crazy self down from my tirade. 

I am not proud of the times that I just lose it, the times when I have just had it.  Here I am taking care of these children day in and day out with only occasional hours of time away and they don't seem to care.  Of course, this isn't fair and isn't accurate but there are times it definitely feels that way.  These emotions are not new to any parent because that's part of the job.  There are times, though, that I can't help but want to quit, throw in the towel, say, "Adios, you little rascals!  It's just a feeling though and not a goal obviously because I love the little buggers no matter how mad I get at them.

So the day reached a crescendo as we were preparing for the symphony.  No irony there.  After my husband convinced me to change yet again into my black dress and heels instead of my mom clothes, we gathered all the kids up, even the whining one who did not want to go, and headed downtown.  I'm glad we did.

As I have said once and I'll say again and again and again, raising a child with special needs is incredibly difficult.  One awesome advantage though is that when things are good, they are bliss.  Tonight, there was a moment when all three of my boys and my husband were sitting in a concert hall with the chandeliers sparkling above us and the orchestra onstage in their tuxedos and dresses and I felt my heart filling with gratefulness.  Our children and our family were accepted in this space without risk of judgment or embarrassment.  We were simply allowed to be us among others like us.  That feeling of ease is so rare for us and, even if it lasts for 1 or 2 minutes, it nourishes all of us more than I could say.

After my 3 year olds decided they needed to go out to the lobby with their daddy, my 5 year old sat with me in the dim lights listening to beautiful music.  He wiggled with excitement as he was filled with the beauty of the music.  At the end beau of each piece, he'd clap enthusiastically and exclaim, "Great job, guys!" or "That was the most beautiful music I have ever heard."  When the music wasn't too loud for his ears (which happened enough that we ended up leaving early because of that), he was so enthusiastic and happy that I found myself crying quietly as I held him tightly.

Although the day had some awful moments, more awful than good if measured in minutes, those few minutes where I held my son and enjoyed the music with him were priceless to me.  It was worth it to lose my bloody mind just so I could see him bask in the beauty of it all as I basked in his.

Thursday, May 13, 2010

Whale Rising

Forever ago back in college, I once had a psychology professor give me advice about my struggle with anxiety:  Make a simple life for yourself with as little stress as possible.  I find myself laughing at that advice regularly because life just doesn't make itself simple for you.  I did find a great husband who supports me.  I did complete my education and successfully worked for years.  Other than that, though, his advice seems to have fallen off a cliff.  Several rounds of in vitro fertilization (IVF), a miscarriage, complications from IVF, my first born, my twins and so forth.  I don't regret any of this but one could never characterize these life-altering events as being simple or stress free. 

This morning I woke up lower than a whale's butt (one of my Mom's awesome, west Texas expressions).  Everything was bothering me.  One child was feeling poorly and needed my undivided attention.  The other two kids were being relatively fine but they each had their needs and wants (which in years past influenced my creating the song "the needy-wants") that require attention and energy.  Hair in a wad on top of my head, eyes seeking a fresh pot of coffee, I found myself berating my life, how much I suck at it, and worrying about how to get through another day.  From finding a random booger by the tub (uh, gross), to smelling pee in my bathroom from well intentioned, early potty trainers missing their mark, to remembering how yesterday one of my son's wasn't allowed to play outside with the other kids because I let him wear shorts and forgot to give him a jacket, I kept listing off all the aggravating things in my life and kept finding proof of my failure as a competent parent.  Lest this seems like a puny list, I am not listing it all.  There is plenty more such as the undies that need cleaning BEFORE they go in the washing machine, the fact that I couldn't find snacks for the twins for school, and the fact that I am just plain worn out with my crazy world.

So after getting things moderately under control, I took a bath.  Despite my son with autism using a timer (my brush turning in circles to his own time) to try to speed me along just outside the door, I dove inward and told myself to shut up.  Using some of a good friend of mine's words, I told myself to "cut that shit out" and wo-"man up, mo fo."  Completely useless advice meant to be taken comically, I couldn't help from giggling.  It takes some courage to tell a woman like me such things without fear of being annihilated. 

Thanks to my husband, friends and family, I have found one of the only ways to shift my focus from the negativity to a more reasonable frame of mind is to use humor.  I am fortunate to have friends who knows just how to say the worst possible things that make me laugh.  Thankfully, when my husband isn't wallowing in the pit of insanity with me, he too can make me laugh and remind me that I'm more than all this chaos.  I am still the young girl in the professor's office asking for help with anxiety.  I'm just older now and can teach the professor a few things about managing stress.

If I hadn't gone to the gym the last few nights, I probably could relate too closely with the analogy of being lower than a whale's butt.  After having a few laughs and calling myself on my own bullshit, I can safely say that this, uh, whale is heading for the top.

Monday, May 10, 2010

Too much?

Having a child with special needs really forces you to confront your weaknesses and to grasp for your strengths.  I have found myself looking honestly at my own behavior, my idiosyncrasies, my habits.  Some are benign and don't impact anyone adversely.  Others are helpful and may actually help everyone in our family.  Then there are those that simply suck, those which don't help my son or anyone else for that matter.  I hate those.

One seemingly benign trait of mine is that I'm a communicator.  I like to make myself and my actions clear.  The problem is that I also tend to be an over-communicator.  Too much information.  TMI.  That's me.  You don't want to hear it, well, I'm telling you anyway.

I don't know why I'm like that.  Ultimately, I believe that relationships do best when communication channels are open.  My problem is that I communicate with too many people, not just those with whom I am close.  I think some if my need to gab may stem from my inherent enjoyment of people, the feeling of being one among many.  As my Mom reminds me from time to time, I told her as a young girl that, "I LOVE people." 

I find myself frustrated when I don't know how to balance sharing information with protecting privacy.  I'm not very concerned about protecting my own privacy mainly because I am who I am.  Nothing will change that.  What bothers me is when I feel that I'm not protecting my son's privacy enough in relation to his autism.  Being an over-communicator, unfortunately or fortunately depending on your view, is a part of who I am.  Having a mother who is an over-communicator may not, however, help my son.  Almost everyday, I make a point to say as little as is necessary but, like an alcoholic, sometimes after that first drink, I find myself saying more and more as the conversation progresses.

Today, my son was having an argument with another child in my presence.  My son was the first one to get to school.  He likes to be the first one in line or the "line leader."  Another child wanted to be the line leader for a change and the argument began.  As is typical of autistic kids, he is rigid when it comes to change.  He felt he must be the line leader period.  The other child's mother and I intervened.  Thankfully, the other mother was very helpful and we managed to defuse the situation.  Instead of playing it off, though, like my son was just being a pill, I explained the situation to her (i.e, my son is autistic and his behavior was a result of that).  From there, we briefly discussed autism and my son.

Some would say that my disclosing his autism was justified and, in some ways, I'd agree.  I don't want my son to be perceived as a jerk when his behavior is not his fault.  On the other hand, was my disclosing his autism more for him or for me or a combination of the two?  Did I feel I needed to explain his behavior so she wouldn't think I was a poor parent?  Yes, somewhat.  I struggle with finding the balance between when to disclose and when not, how much or how little to disclose and which situations deserve explanation.  If I were a more secretive person, I probably wouldn't struggle with this since I would simply operate on a need to know basis.  Although I know I simply could never be tight lipped about his autism due to my inherent nature, I need to become more discreet in situations where disclosure is simply not necessary or helpful.

My tendency to over-communicate is just one example of a trait of mine which has the potential to impact my son.  Although I'm proud of those traits which help him, I can't help but agonize over those which may not.  I  know I can't be perfect but I also can't help but try to be.

Sunday, May 9, 2010

A special mother's day message for my Mom

I am fortunate to know many caring and generous people.  In my darkest days, I know that I have friends and family with whom I can talk in order to help me regain a healthier perspective.  At this point, there is no changing certain elements of my son's behavior.  No one can really help us if what we're seeking are for things to change in a fundamental way.  The best help is to have someone with whom I can share my deepest feelings, good and bad, and not be judged.  Having someone who focuses on helping me find my strength, laughing with me at the crazy, nutso world we sometimes live in, supporting me when I feel lost is priceless.  I can say unequivocally that the one person I know I can always call is my Mom.  Not only is she there for me, she is there for my son with whom she has a very special bond.  She "gets" him and she adores him.

Mom, thank you for listening to me vent.  Thank you for your dedication to me and my family.  Thank you for making us all laugh.  You are so much more than a mom to me.  You are more than a friend to me.  You just are - you're there, you care and you rock.  I love you.

Wednesday, May 5, 2010

In the shade

I have often found writing a soothing activity that allows me a chance to still my mind and focus.  There are times, though, like recently when my mind is stirred to a point that I am unable to see the same thought long enough to see it clearly.  Although I'm better tonight than I have been, I have what I call an emotional hangover.

One of the underlying causes for this emotional whirlwind is our concern that one of our other children may be showing some signs of Asperger's Syndrome, albeit much less severe but troubling none the less.  There have been times when I would vehemently deny that he or his twin show any symptoms of an autistic spectrum disorder (ASD) but now I'm not so sure.  With my son who has been diagnosed, we now see it more clearly and have been better able to distinguish which behaviors can be linked with a neurological condition and which are simply normal kid stuff.  With my son who I now am worried about, I'm wondering if the behaviors that bother us are a result of his age (he's 3) or if they're symptoms of ASD.  I'm also wondering if we just have Asperger's glasses on and are seeing it everywhere. 

Of course, it's not too surprising that any of our sons would show some signs of it since it's in their genes but I simply don't want to go there in my mind, to think that another of my precious children could have this challenge ahead of them.  Although I know that I'd ultimately find the strength to go on, right now I just crumble inside when I think of the possibility.

I so want to be wrong.  I want to be an overly worried parent.  I want to be a naive, anxious mother. 

We won't know for a good while as we're waiting to have my son evaluated.  In the meantime, just the thought of the possibility that he could have it, even in a milder form, makes me sad, concerned and troubled.  I know I need to focus on the fact that we simply don't know but it's difficult to do that when he exhibits behaviors that are shades of what we've seen before. 

As I have struggled with these emotions and have talked endlessly with my husband about it, I am taking special time with my son, giving hugs that last a little longer, and telling him I love him a little more often.  Regardless of whether he has some ASD traits or has ASD itself, he will always be my precious little one.  He will still be who he is whether his behavior's meet certain criteria or not.
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