Friday, February 17, 2012

Path To Grieving

I've thought about this post for a long time,  I've started it, and deleted it several times, and may several more until I feel comfortable enough to post it, if I ever do.  There's nothing comfortable about death, and if you're on the spectrum, I find this is especially true.  The words that I write here I could never ever speak out loud.  The discomfort involved would be too great.  They'd never leave my mouth.  The air would travel up my chest, to my throat and get stuck in one big bubble of sadness and awkwardness.  I would feel equally uncomfortable if anyone tried to talk about their feelings with me.  It would be intolerable.  I always slink through February 17th in hopes that my husband (who has a long history of not remembering important dates)  does not remember what today is.  If he does, he will get all emotional, want to share that with me, and I can't.  I couldn't then and I can't now.

Today, 7 years ago, I gave birth to a daughter named Brenna Hope that was stillborn.  She had a rare condition called Anencephaly .  It is basically a birth defect where the spinal cord never fully forms, so the baby never grows the entire brain, or cap of the skull.  The baby is alive and kicking while still inside the womb, but cannot survive once born.

I remember the doctor's visit all too well. It was after the sonogram was taken, twice.  No one would say much during the sono and the doctor called me after the second one for an appt that was out of the usual schedule.  It was an odd situation, as my doctor had a stutter, and it was a pretty severe one, at that.  The more nervous he was, the worse his stutter... So picture me in his office as he has to tell me and my husband that our baby (at 7 months gestation) will not live.  I never thought the sentence would be able to leave his lips, as I sat there in agony trying to guess his next word he was trying so desperately to get out.  I just wanted to know what was going on with my baby.  The room starting spinning, and I began to get dizzy.  I couldn't hear the words after I heard 'no brain' .  My boys were beginning to act up, (as ASD kids do) so I took them out to the car while my husband talked to the doctor.  I didn't want to be in that room anymore.  I didn't want to talk to anyone. 

 My husband and I made the decision to carry on with the prenancy until I went into labor, which happened at 34 wks .   We were prepared for her arrival. I bought a few outfits.  One for the hospital, one for pictures (which were graciously taken for free by the hospital's photography) and one for burial.  Bonnets were a must to cover the disfigurement.  My mother in law made her a quilt to be buried in, as well as an identical one for us to keep. We had a coffin made for her.

We had a viewing and a small graveside service.  I appreciated everyone's thoughts and efforts in attending. The make up artist who donated his time to make my angel look presentable, the mortician who lowered his costs to accommodate our budget.  It was all very thoughtful.

I did not cry.  Not until I got home. I did not want my husband's hugs.  I wanted him to stop crying. I wanted him to leave me alone.  I wanted the pain to go away.  If you've never lost a child, then you cannot fathom this kind of pain.  It is unlike any ever felt.  I had no way to process it.  It was stuck inside me, swelling without any idea of how to release it.  I thought my husband was being too dramatic, as his grieving began the moment the doctor uttered the words 'is not compatible with life'.  I did not. Logically, I processed it.  Intellectually, I knew.  I never was in denial.  I joined the only on-line group I could find for this kind of birth defect.  I could not connect in any way emotionally with these mothers.  So, I carried this pain with me.  There was no way of getting rid of it, of releasing it, or of easing it.  I had no intention of going to candle light vigils for lost children.  It was not going to bring mine back.  It was just a display of emotion to me, and that I found un-useful.  I wished that I knew of my AS, back then. I would have understood why I grieve differently. I'd have been more compassionate and supportive of my husband's need for grieving and affection during this time.  Maybe, I would have been more prepared for the delayed wall of utter sadness, despair, and agony that awaited me not long after the burial. 

I wonder what kind of cake I'd be baking today, if things turned out differently?  Would I be wrapping barbies, or legos? Would she have a party with friends over?  Maybe, she'd be like the majority of us in or family and be on the spectrum.  Or, the harder questions.. Would I have had enough time for her?  Beans was a baby when she was born, so there was no way for me to know that he was profoundly autistic. 

I've heard people call autism a 'tragedy' right there in front of their living, breathing wonderful little children.  I tell you I know for certain that autism is no tragedy.  I know tragedy.  I have a keepsake box clothes, plaster footprints, and a picture on my nightstand of what I would call a tragedy.

The old saying, 'time heals' is truthful.  Every year it does indeed get easier. I am able to share this with a wider audience than those closest to me for the first time.  Even though it is in writing.  It's not been easy, but I have learned and gained perspective in life.  Children are gifts, even in the difficult moments I remember to be thankful, more patient, more compassionate, more playful. I know how precious they really are and how each moment is to be cherished. 


Thursday, February 16, 2012

I Am Not Rude!

This morning Bubby asked me a question that I cannot readily answer.  I could, but it's not really a yes/no black/white question and answer.

He was about to leave for school and he had a look on his face like he was thinking deeply.  I know the look.  It's a mixture of emotion held back from the thought or memory playing in his mind.  He shifted his body toward me and looked at me, in an almost demanding way and said:

"Mom, am I rude?" with a hint of almost irritation and defiance.

I froze.  This is such a broad question.  I was unsure of context.  His sister tells him he's rude often.  I'd prefer it be called blunt, than rude.  He doesn't mince words.  His future wife will need a Teflon ego or lots of support.  This I am sure of.  Still, where was this question coming from, and why did it have him so concerned?

So, I continue with the conversation:

Me: Well... I don't know that I would call you rude. Why?  Why do you ask if you're rude?

Him: Luke (a classmate) said I was.

Me: (gulping at the possibility that he told someone they were fat, ugly, or some other such insult) "What did you say to Luke that made him say that?"

Him: "I told him to stop breathing on me! That's NOT rude."

Me: " Well, sometimes... it's best to leave some things unsaid and to ourselves.  If it was bothering you so much why didn't you just move and not say anything?"

Him: "I couldn't."

Me: "So, you couldn't move away, and neither could he?"

Him: "No, but I was not rude."

Me:  "Well, then the polite thing to do is to not say anything at all and try to deal with it.  It's not his fault"

At this point, he is clearly getting worked up.  Fists balled, eyebrows down.  We are moving into meltdown at light speed and he is not even at school yet.  I try to remind him about good manners, like please and thank you, make people feel good, and respected.  There are other manners to use as well, like thinking about other people's feelings when we talk to them.  This made him more upset.  He contended he used good manners.  I'm sure he did.  I'm sure he said please, before telling the boy to stop breathing on him.  I, also explained to him that I so totally understood that it feels so awful to be trapped in close proximity to someone with bad breath, and you can feel their breath on your skin.  It's just sensory torture and what I hate about packed elevators and other such places.  I also told him that if he can't move from someone, then it's not nice to comment on them breathing on him, or anything else they can't fix immediately in the moment, which moved us into stage 2 of meltdown approaching... The "Aplogize!" phase.  This is the calm before the storm with Bubby.  He needs you to tell him you're sorry for being wrong.  This is a total Sheldon moment if you've ever seen Big Bang Theory.  I can't say that I'm sorry for hurting his feelings, or upsetting him, or that he feels upset, or anything besides 'I'm sorry for saying you're rude'.  I never said this, but I never didn't say it, either.  He sees this truth. He sees this work around of words that intend to convey something, but relies on one to not acknowledge directly that you do, in fact agree with the other side.  He is not interested in anything else, but yes or no, and he clearly is biased in the answer he wants.  He knows that my careful tiptoe around the answer means that I think he is wrong and to him that is all that matters.  I know from experience that to withhold an apology is one of the few things that makes his world crumble into pieces and send him into head banging, screaming for hours, meltdown.  I know that many would think 'for shame, that you give in to this.' but... they don't know the aftermath of being on the right side of wrong with Bubby.  I do.  It's not worth it.  To withhold an apology it would be so anxiety provoking and upsetting that it is not worth the lesson that he can't always be right. 

So... I suck it up and tell him that I'm sorry and that he's not rude.  After all, I know he didn't mean to be.  I don't know how to explain it to him.  All these arbitrary rules of what is considered rude and what isn't.  I don't even understand them half of the time. "Why was that considered rude?!?" is a phrase uttered out of my mouth at least twice a month.  In my opinion, I am just sharing my opinion, or letting someone know they have a fact wrong.  To others, I at times, lack tact.

I gave Bubby his customary hug and kiss he always also demands after the apology, as routine dictates and he went off to school, hopefully feeling better.

Thursday, February 9, 2012

Letting Go Of Pain From The Past With Compassion

The other day  I ran across this this article about dysfunctional families.  It took me aback a little bit.  I held the words in my mind processing it for days now.  This is how my mind works.  I mull things over adding bits and pieces of information and understanding, until I build a better understanding of a new concept.  This process can take days, or it can take years. 

As a child, I was always acutely aware of my mother's sensitive feelings. I wanted to make her happy, and proud of me.  When I had class parties I'd always pick out the candies and treats she'd like best, before eating any myself.  I'd burst in the door with excitement presenting the treats I'd gathered for her.  I'd do the same at gift shops at class field trips. I'd use most of the money I'd been given to buy her something before I would myself.  Sometimes, I'd not buy myself anything at all.  While the other kids were busy thinking about what they wanted to buy, or what would make them happy I was busy trying to make my mother happy.  This is as one might have surmised by now, an endless task, as well as not my responsibility.  It's unfortunately one in which I've carried with me as one of those painful lessons you learn as a child.  I never learned to look after myself first.  Of course, there are positives to this, in that I am a generous person and will share anything I have with anyone in need.  I can and do get taken advantage of, as well.  I attracted people that were abusive to me and I accepted their abuse as just the way it is in grade school, all along until adulthood.

My father is likely on the spectrum himself, and was emotionally unavailable, as well as physically due to working long hours.  When he was around, he expected order, and quiet.  He never gave compliments and always let you know in a harshly critical manner when you were wrong.  I stayed away from him as much as possible, because we didn't get along.  I got no support from him and my ability to out-argue him relentlessly got me labeled a troublemaker.


As you might imagine, my father was completely unable to handle my mother's wildly swinging emotions and need for empathy.  He is simply unable to do so and she is unable to regulate herself.  I firmly believe she has Borderline Personality Disorder.  The two together is a recipe for disaster.  I became the person that things hinged on.  If things were good, I was good.  If things were bad, I was bad.  I was/am the scapegoat in the family.  My mother's mental health declined year after year.  By the time I was in my adolescence she was pretty neurotic.  With me about to leave the home, and my brother most of the way grown she wasn't as needed anymore.  She saw things that weren't there and accused me of doing things I never did.  If I got a new friend, a boyfriend, or even an interest that took my time away from her... she'd come up with something that I had done or they'd done to keep me away from them.  Even going so far as to admitting me mental hospitals, so she could get pity from family.  She believed that I summoned evil spirits to terrorize her and so many other things that were equally as crazy.  Child Protective Services tried to remove me from the home at age 17.  My mother said I was responsible for that, too and refused to speak to me for quite awhile after that. 

I was tragically scarred by these experiences.  As an adult now, I am putting things into perspective, allowing healing and new growth.  One of those processes is understanding what on earth made my mother behave the way she did/does.  As a mother myself, I can't fathom treating my kids that way.  I have asked this question many times over, and the answer I believe is in this quote:

“When another person makes you suffer, it is because he suffers deeply within himself, and his suffering is spilling over.” Thich Nhat Hanh"

 

I know my mother suffers.  She suffers greatly.  She can't help, but to let it pour over onto others, infecting them with her pain.  The last two years we are not on speaking terms at all.  Her pain of feeling abandoned by me was more than she could handle.  A conversation couldn't go by where out of the blue I'd be told how all of my struggles with my ASD kids are my own fault for moving away from her.  She won't visit me, because I made my own bed, so now I can lie in it, as far as she's concerned.  Or if I'd be asking for advice about my daughter she'd drop in that as long as she doesn't grow up to be ungrateful and mean spirited as me, then I'll have escaped the real pain of motherhood that she has endured.  I finally could take it no more.  I told her to get help to manage her pain, or leave me alone.  She chose leaving me alone.  That was painful.  It was awful for me, and I am still gathering up coping skills to help me deal with it.  I don't think anyone ever really gets over something like that.  So, if anything I have derived some comfort in knowing that it's not me, or about me.  She just can't contain her massive amount of pain and agony. This may be an important part for me to move forward, and letting myself feel worthy of love, life and joy.

Saturday, February 4, 2012

Finding Me

I found this quote this morning as I plan out my day:

"All my life I had been looking for something, and everywhere I turned someone tried to tell me what it was. I accepted their answers too, though they were often in contradiction and even self-contradictory. I was naïve. I was looking for myself and asking everyone except myself questions which I, and only I, could answer. It took me a long time and much painful boomeranging of my expectations to achieve a realization everyone else appears to have been born with: that I am nobody but myself." ~Ralph Ellison, "Battle Royal"

It seems to be apt to how I feel today.  How I feel often, as a matter of fact.  I've been trying to sort through so many things, a bad childhood, a unstable life, me, who I am, who I thought I was, or who I thought I should be...Now I am just trying to feel my way through life just being me, but then I'm not sure who that is or who it should be, or I want it to be.  

I think I know who I am.  I mean, my personality is pretty static.  My likes and dislikes don't change much.  I seem to be constantly trying to improve on my personality, though. Like, I try to figure out what is 'right' or more desirable by the world's standards, and I set out to be that characteristic.  I tweak, and change and try to be more 'normal' by other's standards.  What I found out was that not only was I miserable this way, but I also attracted people that would take advantage of my low self esteem.  I tended to attract people who wanted others that would mirror what they wanted.  I was good for that.  Gullible, and wanting to be someone, and to please anyone.  This set me up for many manipulative friendships.  (I'd say relationships, but guys always seemed to be more attached to me than the other way around.) I didn't care much for romance, but companionship, a place to feel cared for unconditionally, yes.  That I needed, and wanted. 

One of the characteristics that I find seem to cause issues that are a part of me personality is that I say what I think.  Stupidity and others not using their own brains gets me worked up. ( See this post for more info on that) I feel I have to point out their flaws in logic.  This is not from my vantage point always a friendly, likable trait.  It's one I've been working on fixing, but to no avail.  I have gained some valuable insight on having better manners while pointing out other's fallacies, as well as working on seeing their POV, so as I can discern why they might feel differently than I do about something, or why they choose to believe something that is so illogical.   Take for example, the picture of a frail child in a hospital bed hooked up to tubes that has been circulating Facebook.  The premise behind it is that if the picture gets 100 likes he gets a heart transplant.  While that would be grand, it's fucking idiotic.  As if children's hospitals biggest criteria to such serious transplants revolves around something to arbitrary as FB likes.  What if it only gets 89 likes? Is the hospital gonna be like 'Sorry kid.  No new heart for you. People on FB didn't care enough to save your life via thumbs up clicks. Guess you're gonna die.'   When I saw this, my head almost exploded.  I know that I should keep my pessimism to myself, but good lord... I just can't.   I commented, very matter of factly and calmly on the post in question that it didn't make sense.  Then, I worried endlessly (and still am to be honest) that I upset my great aunt.  My anxiety over if I was over the line in my commenting was for a reason.  This reason was, I value truth.  I value people thinking for themselves.  I value hard work that achieves a goal, not some feel good click or prayer that achieves nothing but relieves one's own conscience. When my emotions start screaming at me, I know it is because I am not living by my values.  I don't value keeping peace at any cost.  Nope.  I don't care about that as much as I care about fairness and truth.  I need to accept that aspect of myself, instead of trying to be someone I'm clearly not.


I can be me, or I can spend my life miserably trying to chase after a facade that I think is a better version of me.  Those are my choices.  There's  no way to change who I am, and really no need to.  The path to dissatisfaction, and unhappiness seems to be paved with low self confidence and a general dislike of self.  What I want for my life, for all autistic people (and non-autistics if I'm honest) is to be able to embrace life for what we are, not live in constant battles due to chasing what we have been told we 'should' be. If I want to be happy, if I want to be comfortable, if I want to be content, then I have to learn to like me, and value the traits I possess. 

Wednesday, February 1, 2012

Why (and how) Mindfulness and Meditation Is Useful for People On the Autism Spectrum

I'd like to make a small post about some of the things that I have learned that have helped me to be calmer and happier as an aspie adult.  I see a lot of parents have the same concerns about their kid's emotional states that  I am beginning to learn to deal with.  Techniques, tips and strategies without relying solely on meds seems to be few and far between for parents out there that are struggling with aggression, anxiety and depression with their autistic child.  Other adults may also find some of these helpful.

Without making this entry into a long drawn out science seminar, I will try to briefly explain about what I've found in all my research, and experience.  I have often (and still do) wondered how I can be such a rational, very logical calm, kind person, except when I get triggered into being upset.  Take my body image and disordered eating for example... So illogical.  Makes absolutely no sense in the way I think about it, or behave.  I can sit here and tell you that in a calm way, without much feeling at this moment.  However, if something were to happen to trigger my anxiety about those issues, my obsessive/compulsive nature would be taking over and I'd not be so rational and calm anymore.  This happens to many people with strong emotions, such as anger and anxiety, but those of us on the spectrum can often find ourselves in the middle of a minor, or even major upset and not even always know what triggered it, much less what it's all about.  This is due in part to a condition known as alexithymia.

Of course, those of us on the spectrum do have feelings, very strong powerful feelings, just as anyone else. (Sometimes, I think possibly stronger, but how can one manage to measure emotional intensity? )  This leads to my next point: how we deal with them.  The part of the brain that deals in emotions is called the limbic system.  It can be furthered explained here in this article.  (I know that artcile was primarily about  love, but it highlights the very aspects of the automatic fight or flight patterns of the brain that I wanted to discuss here in this post.)

So, how does one get that space between pure emotionally driven behavior and higher levels of cognition?  After all this is the difference between making good choices and impulsive, regrettable choices.  This cushion of fragments in time where your cognition steps in noticing the first signs of upset in the body before the limbic system is flooded with neurochemicals is important in changing behavior.

There are lots of medications out there designed to help acheive that change.  Sometimes,they work, sometimes they don't , and others cause so many side effects that it's not an improvement on life.  I tried many, many meds and have never found one to work long term. That's why I have turned to relaxation techniques, like meditation.  I'll share some of the sites that I have found some tips and how to's.   See if any seem to be a good fit for you or your child.

Wildmind Buddhist Meditation  This site offers extensive tutorials and articles for anyone interested in learning to meditate and be more relaxed.

Mindful  Lots of tips and articles.

Tiny Buddha-always something insirational here


Mindfulkids

Bringing Mindfulness To Schools