Saturday, September 8, 2012

Uncertain Future

No matter how faithful one is, no matter how well things are going, our future is uncertain.  It just is.  Certainty can only be found in this moment right now.  Even our past can be somewhat uncertain if our memory is minutely or largely lost or distorted.  I guess one could argue that even the present is only somewhat certain because how we interpret this moment is filtered by our focus, our biases (good and bad), our senses.  I have searched hard for certainty in many facets of my life:  love, fertility, children, autism, and now in my health.  I search for certainty within myself.  I search for certainty from others.  I search for it online, in the eyes of doctors, in my dreams.  What I keep finding is that certainty doesn't exist and that it is folly to strive for that which is unattainable.

For me, I think my search has been largely driven by an inherent insecurity, a grappling for something to help me be grounded, to feel strong.  For me, finding a "fact" about something that I am experiencing validates not only my experience but me as well.  I feel certain that I am right.  I feel certain that I'm on the right path.  I feel certain that I am capable of handling this life, this situation.  Not only am I seeking certainty, my children now are seeking certainty about the big questions such as, "What happens when we die?"  "How do I know this is the real me and not the dream me?" and "When I die, how will Santa bring us presents?"  Ok, so maybe not all the questions are big ones but they are certainly big ones for my 5 year olds.

When I don't feel certain about things, I feel anxious.  I feel ungrounded and vulnerable.  I don't enjoy feeling like that so I'm compelled to seek the certainty that I feel I am lacking.  Over the last few years, though, I have feverishly sought certainty about infertility, about autism, and now about my diagnosis of Ehlers Danlos Syndrome, and I'm realizing that yet again I am facing unanswerable questions and that this endless pursuit of certainty is exhausting me.  I can't continue with this unrelenting pace and I must find a way to balance a search for answers while simultaneously accepting the unknown which is before me.  

For those with children who have autism, you know what kinds of questions that cross your mind.  What can I do for my child to help them live happy, productive lives?  What services do they need?  Will they ever talk?  Will they fall in love?  Will they be ok when I'm gone?  Then there are those nasty questions that needle at some of us like, "What did I do for this to happen to my child?"  "How can I be a better parent to my child?"  "What am I doing wrong?"

For those who have been diagnosed with a chronic condition such as mine, "What is this disorder going to do to me?"  "How bad is it going to get?"  "What do I need to do to make this as good as it can be?"  "Do my children have this as well?"  Then, the nasty, mean side of ourselves which asks, "Is this real?"  "Is this pain just normal and I'm making too much of it?"  "Do I just need to 'suck it up'?" "Am I seeking attention somehow?"  "Was my doctor wrong?"

Yesterday, I felt quite sad about my new situation.  I have concerns.  I continue to experience new symptoms of Ehlers Danlos that are disconcerting.  I don't like it one bit.  I know I have a choice though.  My life is a gift and I need to value it exactly as it is.  I don't need others to agree with me to validate my own experience.  I don't need an expert to tell me what I already know.  What I need is to listen to myself, to trust my instincts and to have faith in what I'm experiencing now and to find peace even in the darkest moments.  I also need to be brave enough to love autism even at its worst because it is a part of my children and my children deserve to be loved in their entirety.  I need to love all of myself even the parts that are unstable (literally and figuratively!), the parts that hurt and those that limit what I can do.  Just like my children, I deserve to be loved entirely and who better to love me than myself?  Of course, I can't help but have flash backs of the SNL skit with the line, "I'm good enough.  I'm smart enough and doggone it, people like me."  It's cheesy to say but profound when you really can feel that way.  

So, for those of you who can relate to this post, I hope this gives you at least a moment of peace.  If you have any particular things that help you feel comfortable with uncertainty, please share.  I believe we all have something to teach one another.  Thanks for reading.

Friday, August 24, 2012

The Power of Validation

Yesterday, my oldest (N) and I found ourselves in one of our classic quandaries.  N is a huge fan of Minecraft which is a computer game involving world building that can be played in the creative mode (where you don't have to worry about getting killed) or survival mode.  (For those familiar with Minecraft, I apologize for my very simplistic description of a very detailed, multi-faceted game.)  Lately, we've been playing in multiplayer mode.  I say "we" because I too have taken the plunge in order to understand my son and to have a great way to connect with him.  His younger brothers (who are 5) are playing with him as well.
Needless to say for those who are familiar with Aspergers (or autism in general), none of us play it adequately for N.  (I'm actually using our time on Minecraft as a way to work on his flexibility and social skills since he's more likely to learn these skills while doing something he loves.)

The quandary that I alluded to earlier began when N was playing my youngest twin (D).  N was playing a new 'mod' that was intended to be played in survival mode and had several, specific challenges to complete.  D wasn't interested in playing in survival mode because he can't play well enough not to die.  Since both boys are on the spectrum, their rigidity tends to lead to explosive episodes of aggression when they disagree.  Of course, this no doubt happens with typical children.  With spectrum children, though, the disagreements that lead to aggression can be about seemingly benign, trivial issues, and, even on those conflicts which are understandable, once they have set their minds a certain way, there is no clear way to reason with them.  The subsequent aggression is often way out of proportion to the importance of the issue (from an NT's perspective).

Inevitably, N changed D to survival mode remotely and then killed his brother's Minecraft character.  This, of course, led to aggression and resulted in N going downstairs to cool off.  N was beginning to escalate to a meltdown and so I went downstairs to help.  In situations like this, N is overcome with emotion to the point that he simply is out of control.  I often have to be careful approaching him during this time because he has hit me during these fits.  From a few feet away, I suggested he take some deep breaths and then I calmly tried to describe the situation - that he wanted survival mode but D did not and that it was OK if they played in different modes.  End of discussion, right?  Of course, that didn't work!  It was worth a try but then I had to pull back and listen.   As he thrashed around, he yelled the same thing over and over again:  "Sky Block" (the mod he was in) was SUPPOSED to be in survival mode!"   I stopped trying to fight him on that point because, like it or not, N saw it as a concrete, black and white issue and he wasn't going to see any gray.  I knew that if I continued to push that point, he'd only escalate further.

Instead, I had to be flexible in my thinking.  I had to validate my son's feelings because, whether I saw it a different way than him, his feelings were legitimate.  I gave him a moment and then told him that I understood that it was frustrating for him because he wanted to play Minecraft the way it was supposed to be played.  I understood that he was very angry that his brother refused to play the "right" way.  My saying this calmed him somewhat and took the edge off his anger.  I then talked about how we all have to learn how to do things and that some learn faster than others.  I gave the example of riding a bike and how training wheels help a rider learn to ride.  I told him that creative mode was like training wheels for a learning bike rider and that D needed his training wheels when he played.  Not giving him his training wheels (creative mode) was kind of cruel since he wouldn't be able to ride (i.e., play the game).  I saw a light in my son's eyes and could see that he got it.  He switched back immediately (as he often does) to the sweet boy I know and he hugged me.  My showing him that I understood what he was feeling and telling him that his feelings were legitimate made him feel safe and secure which then led to his being more flexible in his response to D.  They continued to play with D in creative mode and they didn't fight about that issue for the rest of their time playing.

I think everyone deserves the right to have their feelings validated.  When we refuse to validate another's feelings and experiences, we may miss an opportunity to connect with them, to fully understand their situation as well as help in times of struggle.  When I think of pivotal times that my feelings have been validated after years of being ignored and/or disputed, I can still feel that sense of release that comes with it.  I think of when my first, second and third children were diagnosed and, more recently, when I was diagnosed with Ehlers Danlos Syndrome.  When professionals were poo pooing my concerns about my children, it was harmful to my family because our struggles were being belittled and unsupported.  When my aches and pains were written off as being in my head or insignificant, I continued to harm myself unintentionally because I didn't understand that my hypermobility was making me more injury prone because I continued doing things as if nothing was wrong with me.  Even if we as humans disagree with one another, we should validate each other's feelings and perceptions out of a sense of humility and respect for their dignity.  When we validate another, we may also discover a truth unseen before and may be able bridge a previously invisible gap or we may be able to help another find answers to their concerns.

After my recent diagnosis I now look back on my life with a much better understanding.  I can't help but feel resentment toward those who didn't listen to my concerns, but, more importantly, I recall my own self doubt that resulted injury after injury.  Instead of malformed collagen, I thought maybe there was something wrong with me as a person.  I realize now that I need to continue to remind myself that I need to fight for what I believe despite those who disagree.  We mustn't depend on being validated to maintain our resolve which might sound like a contradiction to what I have said above but, with our children and our loved ones, we need to recognize the power validation has and to dispense it freely.  If a child is surrounded by those who dispute their feelings, their self esteem is at risk and they may succumb to self doubt and may not flourish as well as they would if we recognize the legitimacy of their feelings, experiences and perceptions of the world.  If, however, we validate their feelings and experiences at an early age, they will learn from us that their feelings are legitimate and, hopefully, will take that confidence with them to fight for what they believe in.   Of course, everyone experiences self doubt but maybe our children can be armed with less.  When I think of validating others, I find myself reflecting on the Sanskrit word (and gesture), namaste, which can translate as, "I recognize the divine in you."  I think when we validate others, we put that into practice.


Tuesday, August 7, 2012


You would think I would be a mature adult at this point in my life.  Something about IVF, twins, and autism times 3 should have molded me into a competent, functional adult yet after my behavior yesterday at the community recreation center, I have my doubts.  Here is the scene:  I have just finished doing my exercises in the pool, involving swimming laps and walking backward through the lazy river, when I proceed to swim behind the seniors water aerobics class on the way to the stairs.  For those who know me, I think most would agree that I am typically a polite and courteous person (especially with strangers since I am a Texan after all).  I was swimming slowly and as far away from the class as possible (the class is not roped off and there were people around it) because I didn't want to disrupt the class.  However, the older adult female teaching the class caught my attention and, with the tone of a teacher, pointed at the sign indicating a class was in progress.

I stopped and said, "Yes, I can read.  I was just getting out of the pool."  With a tone dripping with disapproval, she explained that I could simply walk.  Now I should have just continued on and let her tone and attitude roll off my back along with the chlorinated water but the child in me couldn't resist responding in a way that my previous 13-year-old self would have applauded.  I waved my fingers in the air and stated in a sappy, annoying tone, "Well, PARDON ME!"  I then proceeded to the stairs and then to the hot tub.

Steaming figuratively and literally in the spa, I was trying to convince myself that my response, although relatively mild considering what filth can exit my lips, was justified and that I was being treated as a child by an older crowd of women.  I also was puzzled by my emotional reaction to it because it simply hurt my feelings.  I hate to be reprimanded for something that benign and when my intent was good.  Then it struck me that part of my reaction had to do with the fact that I felt like they saw me as this young thing who is being careless and who may not have the troubles that they do (as was evident by the multiple canes propped by the stairs for their use).  The irony was that I'm not that different from them than they realize and how dare they assume anything about me!  I was ready for a show down with older ladies, and I realized that I needed to chill out.

What influenced my mood yesterday was the fact that earlier that morning I received confirmation that I have a rare, connective tissue disorder called Ehlers Danlos Syndrome (EDS).  Simply put, my collagen is malformed resulting in hypermobility of my joints and early onset, degenerative arthritis.  I was swimming because, at this point, it is the safest way for me to exercise without injuring myself.  As a result of EDS, my joints will wear out sooner than most and I am more prone to injuries such as dislocating my knee cap, spraining and straining muscles, ligaments, etc.  Technically, I would probably benefit from the seniors water aerobics more than they realized.

I also realized that it is highly likely that at least one of my children has inherited this syndrome.  As I struggle to find my way to live injury free while staying healthy, I can't help but ponder how I will help my affected children with yet another diagnosis which will prove challenging to them as well.

So, I was childish and immature in my response.  I also overreacted and took it too personally but I simply was having a bad day and, "pardon me!" wasn't in the mood for anyone's assumptions.  I'm thinking I'll crash their next class and see what happens.  Will they accept me despite my age, or look down their noses at my seemingly young, healthy self?  Stay tuned for another segment of my battle with the waterlogged gals of Murray.
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