Grip

Over the last few days, I have found myself describing myself to myself as "she's come undone" like the book title.  The fact that I'm describing myself to myself should be a warning sign in and of itself but the fact that I find the term "undone" to be a fitting description of my state of mind these days is not the most encouraging.  I have also viewed myself as:  fried, done, wigged, spent, lost, done, done and then DONE. 

Before I describe all my self-hatred I have been feeling these last few days, I will reassure my readers that I am taking steps to help myself.  Last week, when I thought that I was about to completely lose it, I went and had a 1 1/2 hour massage.  After the lovely massage, I purchased a 6 month membership because I'm not letting my muscles get that out of whack again.  For those in similar situations as me, I will say frankly that we can't afford it really but I've decided it's more cost effective than my being institutionalized, right?  I also have an appointment with a therapist this week to help ME and not just my child. 

So, what's my problem?  It's called coping and, for some reason, the last few days have been difficult for me.  Perhaps it's seeing my 3 year old twins growing up and seeing the difference in their development from that of my older son.  Perhaps it's watching my autistic son do things which break my heart, knowing that those who don't know and love him will not see how special he is.  Perhaps it's the fact that I'm approaching 40 and my hormones are out of whack.  Perhaps it's the fact that I haven't been taking good care of myself.  It could be many things but, regardless, I felt sandbagged this week.  Simply put, my life was more than I could take this week and I found myself on my knees begging for strength, begging to be a more patient parent.  I wished that I didn't appear in public as frazzled as I felt.  I wished that my children would simply behave, be "normal", be quiet, be still, be clean, and so forth.

When I went for my massage last week, I was amazed by how tense I was.  The masseuse showed me how tense I was several times.  Without my knowing, he'd hold parts of me in ways that, if I were calm, I would lie a certain way.  If tense, well, I'd be doing what I did such as not having my shoulders flat on the bed.  My head should have laid back on the bed when he pressed my neck a certain way instead of floating 4 inches above it.  My body was so tense that in an hour and a half, he was unable to give me a full body massage because he spent so long working on the many knots I had.  In the future, I will know I'm making progress when he reaches my toes.

I simply have not been in the right frame of mind lately and I find that to be so discouraging.  I've realized that, in the past, gutting things out during difficult times would help me get through the situations but my son's condition isn't temporary.  I have to adapt to the chronic nature of his autism and the chronic nature of my grief.  I'm not sure how to do that yet but, because I am one stubborn lady, I know I will.  It's just not this week.

So, this week I'll try to be honest with the therapist and not put a brave face on.  I'll try to show her the ugliness, the self doubt, the hatred I often feel toward myself for not being good enough.  I can only hope she's worth the expense and that she'll tell me something I don't already know.  If I can't find the strength to pull myself up just for me alone, all I have to do is look in the eyes of my children.  At one point today, my oldest son's words penetrated my heart deeply after he heard me saying to myself that I was going to explode (due to a stressful moment with all the kids).  He said, "we wouldn't be a family without you, Mom."  Talk about going for the jugular. 

He's right though.  He needs me.  They all need me and I need to get a grip and move on.  I'm working on it.

Beer and Ice Cream

What they don't tell you before you actually give birth to your children is that, oftentimes, your diet shifts from pickles and ice cream to beer and ice cream.  Of course, if money is tight then a diet of beer alone might sustain you if you can make yourself eat the half-eaten food the children decided was not good enough for them to eat (this coming from children who are often caked in snot and telling you how good boogers taste.)  Today, was not a horrible day but it was certainly not great.  At the end of it, I just decided to quit caring for a few minutes. 

Of course, we bathed the boys, brushed their teeth and all the parenting things that we can't rightfully neglect but, when the kids asked for ice cream for dinner, my husband and I looked at each other and thought, "Why the heck not?"  Considering how insane it had been prior to dinner, why pretend that feeding our children ice cream could possibly be worse?

Between boys fighting (since we do have 3 of them), grown boys soiling themselves and REFUSING to admit it, to clean themselves or to cooperate then cleaning said soiled clothes, comforting a child bitten by the one who "should" know better but doesn't because he's autistic, and all the normal, crazy stuff that would go on in a house containing 3 boys who are 5 and under.  There are simply times I just give up.  I know it's an error of my perception and I know that these feelings are temporary but there are times when there is only so much I can do to try and steer my family in a healthy direction.  I can only handle so many regressions, so many set backs, so many literal hits to my face (today, by a precisely thrown toy). 

I almost took my frustrations out on my husband but, thankfully, caught myself and immediately apologized.  At one point, I was acting like a toddler myself by exploding with frustration.  Unwittingly, my husband made a harmless comment after I had just summed up the latest ridiculous ISSUE that my boys were having.  All he did was say, "Uh-huh," in a manner that my psychotic self interpreted as "he thinks he understands as much as me about how nuts it gets after having them for two hours and I have rarely NOT had them" provoked an unfair response from me which was quickly followed by an apology.  The fact is it's tough no matter what.  I should be glad that he understands at all because he is involved.

So, when my children asked for ice cream at dinner I simply didn't have anything left in me to steer these little monsters any further toward the correct direction.  I know that goes against all parenting books.  I know it goes against what a nutritionist, pediatrician, therapist, teacher, so on and so forth, would suggest but I have reached a point now that I have to let up a little and care a little less about some things.  If I don't, the beer might turn into tequila, the tequila into whiskey, the whiskey into . . . you get the point.  This is a tough row to hoe and there are times I need a break.  With my belly full of cookies and cream ice cream, I will polish off this beer (don't worry, there has been a break in between), and will let go until the morning when I'll start all over again.  Perhaps tomorrow, we'll all eat broccoli.

Walk for Autism Speaks

I'm going to be walking for Autism Speaks on May 1st.  If you would like to help me raise funds, I'd be most appreciative.  Since I know how tough times are, please don't feel pressured.  If you have any extra funds and would like to support a great cause, please make a contribution at the following link:  http://www.walknowforautismspeaks.org/utah/aspiewise. 

If you'd like more information on Autism Speaks, visit their website at:  http://www.autismspeaks.org/.

Thank you.

Batter up!

Three sweaty boys standing in a park.  Each boy with his own baseball bat and ball.  Snow-covered mountains towering in the background.  A sense of playfulness and fun filled the air.  Whose family is this?  I found myself in awe of the simplicity of the moment, of how normal this was.  For the first time, I really felt like the mom of three boys - three typical boys.  For this brief moment, each boy was acting like their respective ages.  Cheeks flushed red from their heart-pumping activity, I drank in this moment and enjoyed it as the blessing it was.  I knew that there would be plenty of moments later to remind me that things aren't usually "normal" in our family but I wasn't going to let this moment of pure pleasure slip by without my noticing. 

A few days ago, I was feeling altogether different.  I was struck yet again with how challenging it is to raise a child with autism, how unpredictable it can be and how little I still understand.  At one point, I was almost paralyzed with a desire to give up.  In my poor frame of mind, I found myself wondering what the point was of all the therapies, the work we were doing if we kept finding ourselves back in the same place yet again.  Was I fooling myself into thinking that I could really help him, that he would ever truly adopt healthier behaviors?  Instead of feeling inadequate which is a common feeling I have, I felt an even more dangerous feeling which was resignation. 

Contrasting my low feelings of a few days ago with the contentment I felt this weekend is indicative of the emotional roller coaster one rides while raising a child with special needs.  What is most compelling though is that during these two points in time my son's behavior was relatively consistent.  My perception of his behaviors was what was vastly different.  Without knowing it, my son is teaching me how important it is to still my thoughts, particularly when I'm feeling distraught, and to challenge how I'm perceiving things.  Although I may not be able to help my son in every way that I would hope, I know that I will be a better parent to him if I can accept him for where he is now and if I try to avoid judging my parenting abilities or his less desirable behaviors negatively.

As my Mammaw would tell my mom as a child, things are never as good or as bad as they seem.  Perhaps this was her way of saying that we need to be aware that our experiences are more complex than just the two extremes of good or bad.  Perhaps she was suggesting that we should find peace with all situations and not be swayed by our perception of events.  I will never know but I will say that, although the happiness we felt as we played together was only a brief moment which was then followed by other moments that weren't as blissful, that one moment when I sat back and watched my sweet, sweaty babies loving life was definitely as good as it seemed.

No more bunny business

I'd be lying if I said that Easter was one of my favorite holidays.  Perhaps it's because I'm not Christian.  Perhaps the age old celebration of the vernal equinox isn't enticing enough.  Sometimes I think it's because I can't stand all the cute, pink crap everywhere.  I have fond memories of Easter as a kid and have had decent ones with my children but it still doesn't grab me like other holidays do.  Tonight, as my husband and I assessed our well being at the end of this less than perfect Easter, we agreed that it was a good thing that this holiday wasn't one of our favorites because we would have been disappointed.

Among parents of kids who are autistic, holidays often suck to put it frankly.  Our children get so excited and overstimulated that their little systems max out.  Trying to regulate the environment in a manner that doesn't trigger their negative symptoms while also providing them with the fun holiday experience which they seek is a thankless situation because, so far, we have yet to manage it.  Oddly enough, though, our son seemed to enjoy the holiday despite having melt downs and other difficulties.

After our son had had a meltdown which lasted at least an hour that involved his hitting, kicking and spitting at us, my son settled down to lunch and casually asked his daddy, "Daddy, are you having a great Easter?" enthusiastically.  Both my husband and I were emotionally fried but our son acted like nothing had happened.  Having just experienced our son's unhealthy response to a relatively normal situation, we were struck by the disconnect between his world and ours.  His idea that things were fine is evidence of the deficit autistic children have with theory of mind.  As far as he was concerned, he was fine so we should be too.  He does not understand the consequences of his actions and how they might make others feel.  Not only are we aware of our feelings, my husband and I are aware of his lack of understanding.

Unlike previous years when we didn't understand our son as well, I began packing up the Easter decorations this afternoon.  I was done with it and was ready to pack it away.  My twins asked me what I was doing and I explained I was packing the stuff away for next year.  "But it's still Easter."  If only I could explain to them that their older brother needed to get back to non-holiday time but they are only 3 years old.  This was their Easter too.  It will be years before I can explain some of the strange and seemingly unfair things we do.  Instead, I quickly responded, "Yes, it is still Easter.  Absolutely.  We're going to MiMi and Granddad's to have Easter dinner so we're still going to have fun."  Satisfied, they went on making silly voices and giggling.

As I continued to pack things away, I thought of yet another way my twins are impacted.  While cleaning up Easter's meal at my in-laws, my mother-in-law (MIL) made a good point when I told her how I regretted that things didn't always seem fair and balanced for my twin boys since we all had to make adjustments for our son with autism.  My MIL helped me feel better by stating that our family and situation is all they know so it feels right to them.  Also, we're fortunate that we had twins so they have each other.  If we had had just one child after our oldest, then he or she would have felt a lot more isolated and alone.  This way, our twins have each other and the two of them have their big brother whom they both love.  I found this very reassuring.

Tomorrow, I will remove the last few vestiges of Easter.  It will be another holiday of their childhood of which there will be plenty of pictures to review.  I can only hope all of our children will look back on it like our oldest did.  Despite the emotional upheavals he had throughout the day, he glowed with happiness over the joyful holiday, oblivious of his parents' fatigue and occasional sadness and frustration.  I can be thankful that the deeply distressing emotions he has during his meltdowns don't seem to stay with him.  Perhaps, the rest of us need to learn to let them go just as easily.

Have a light?

Prior to my son's diagnosis a few months ago, I might have noticed that today was Autism Awareness Day.  Then again I might not have.  In the past, I often viewed public awareness days in a detached sort of fashion.  I supported the idea of awareness days but didn't truly appreciate what they might mean to those impacted by the condition being highlighted.  Autism Lesson 3,432:  Awareness days are important.

As a stay at home parent who spends 95% of my time caring for my children, it is very easy for me to feel isolated and alone in our situation.  Today, as I comforted one of my 3 year olds who had a bloody nose after a bad confrontation with his autistic brother, I considered how many other mothers in my situation are experiencing similar frustrations and disappointments.  Parents around the world are struggling with the same or similar questions, are feverishly reading as much as they can about their child's condition.  Today, all around the world, many are taking notice.  I am so appreciative of those who are not directly affected by autism who simply care enough to participate.

In an effort to get the world's attention, many are lighting it up blue thanks to the awesome efforts of Autism Speaks.  From lighting up public buildings, wearing blue or putting a single blue bulb out on their front porch, people around the world are taking a moment to focus on autism.  Tonight, I was moved when I looked at the pictures posted on Light It Up Blue.  Even the Empire State Building was lit up in blue.  Seriously, how awesome is that?

The number of children being diagnosed with autism is disturbing.  The latest statistics show that 1 in 110 children and 1 in 70 boys are affected by autism.  My son is one of many.  My family is one of many.  Although the lights won't be blue tomorrow (although the entire month of April is considered autism awareness month), our children will still be affected by autism.  Just the simple act of focusing people's attention on this condition for one day could lead to inspiration, could give someone that extra boost they need and, at the very least, could help us all feel less alone as we continue to care for our dear, darling children.