The Space Where My Picture Used to Be- healing and accepting parental rejection

This morning my husband mentioned something to me that set off one of my triggers. It's the trigger that is linked to a sad, desperate, despairing deep in my the pit of stomach. It doesn't matter what it was, because that's not really important. What is important is that something so seemingly mundane should not release in me such extreme emotions that I sit on the edge swinging my feet, and tossing pebbles curiously into the pit of despair for the rest of the day. I make no fuss. No one around me would likely guess that I feel this way. I have matured enough to know that my reaction to something so small is out of proportion to the situation. It's a quiet sadness that longs for reassurance.

I know where this pain comes from, and while it's understandable, there is no logic in getting upset over something I can't control.

A few weeks ago my grandfather, and his new wife came to take my two oldest to stay with them for a few days. I jumped at this opportunity, because neither my parents, or my husband's parents (except his father) do anything with my kids. They literally don't ever have the grandparent experience.  While they were there they visited my parents.

My daughter said that there was no evidence in their home that I even ever existed. All pictures of me have been removed

How I Experience Empathy

For a couple of years now, I have wanted to write something about autism, and empathy.  I wasn't sure what, though.  I (as usual!) don't fall into the same belief system as anyone else I know of about this subject.  I find most views to be be extreme.

On one side, I see the ones that think we have no empathy, or at least the typical capacity for it.

Then , the other that contends we have too much to the point we're all empaths.

I don't believe either of those to be true for myself, or my boys from what I have experienced, and known of ASD. So, where does that leave me?

Inner Aspie to "I Wish I Didn't Have Aspergers" - An AutismPositivity2012 Flash Blog Event

Dear 'I Wish I Didn't Have Asperger's'


When I think of that statement I think about the times when I, myself, thought it.  My mind skips back years in time where my own journey wasn't always easy.  Those times, are hard to think of now.  I still have those times now where I think, just for a moment, that I wish I didn't have Asperger's. This letter may well be for me to reflect on during those moments as much as for others out in cyberpsace looking for some consolation.  This letter may be for my son, when he gets a little older and thinks 'I wish I didn't have autism' during his moments of inevitable struggle.

What would I like to say to the child that I once was and to other autistic children out there right now?  I'd like to remind them that the things that seem to huge now won't be in a few years.  I wish I'd known that when I was alone at recess, or picked last at PE everyday.  I'd tell them that it's okay to be an individual and pursue your own interests, instead of worrying if the other kids will approve.  I'd tell them, you will find a friend, a good one.  Just be patient. Do not accept 'friends' that treat you less than in order to have a friend. I'd say, you are good enough, just as you are. Repeat that to yourself until you know it to be true.  This will be the one thing, if any that I would make sure that I as a child would have known.  I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all.

What would I say to that awkward adolescent that I once was, and to the other autistic adolescents out there?  I'd tell them to just hold on.  I know it's hard right now. Being a teenager is hard for everyone, but even harder for us on the spectrum. I'd tell them that they'll get a chance to date and find love.  I know it can be lonely.  I know everyone else is telling you to be patient and the right one will come along.  I know you're tired of that cliche.  I know these words won't stop you from feeling lonely, but please let them soothe you some into knowing that it will happen.  It may not be tomorrow. It may not be next week, but please know that you will not be lonely forever.  If I had a way to tell my former teenaged self something, I'd have told myself to keep busy doing what I like, being confident with myself and the dates and friends would come naturally.  Fretting, obsessing and constantly trying to problem solve will make relationships harder to come by and quite possibly prevent them from happening in the first place.  Getting a boyfriend or friends is not like a math problem or crossword puzzle.  It can't be solved by intellectual thought.  It has to go through the natural stages to evolve.   I'd tell myself that I need to learn about meditation and find a good therapist to help me learn about emotions. I'd tell autistic teens that what others think don't matter as much as what you think of yourself.  Pay attention to keeping things in order on the inside and things on the outside will be much smoother.  Learn how to detect and handle your emotions.  This is not something that is firsthand for us.  It needs to be learned and is crucial to success.

I'd tell teens to take advantage of the internet.  The amount of support available is endless. Find other ASD teen to chat with.  Find ASD adults to mentor you.  We are here.  We've been where you are and understand.  We can help guide you and are more than happy to do so.  Don't post on Facebook or constantly tell your peers that you're lonely ect... This will have the opposite effect you are hoping for.  Find some online support group to confide in.

For young autistic adults, I'd tell them most of all, that it's okay to ask for help.  It's okay to not know things.  There is no shame in needing assistance.  Don't try to do everything on your own to prove that you can and to prove you're independent!  It takes a strong person to ask for help when they need it.  Don't drive yourself into the ground with anxiety and depression by trying to do it on your own.  Find support from somewhere.  Sometimes, with some of us, it won't be family.  We'll have to find it somewhere else.  Take advantage of disability services when and if you need them. 

What I would want any autistic person to know, is that being autistic is okay. Don't waste a minute of your life hiding away who you are trying to be someone you're not.  Do what you love, and love what you do. This will help instill pride.  Immerse yourself into positive actions and let that direct you to self worth.  Don't ever let the bullies in your life win by repeating their stories in your head through the years.  If you can't shut the stories off, get to therapy to help you.  Know, I mean really know that you have worth just as you are.  Be authentic.  Be compassionate with yourself.  You are going to have bad days.  You are going to have sensory issues and meltdowns.  Again, learn your body and emotions. It will give you a better opportunity to handle these things when they come up.  Be compassionate and forgiving with yourself when these things happen. Remember:  " I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all ." That is your new mantra.  The world can be noisy and overwhelming. Sometimes, you might feel like it's all too much, or your heart literally aches with loneliness.  Please, remember that there's many of us that share your story or care very much.  We have autism, too, or children that are autistic, or friends, and family.  You're not alone. Reach out to us.  We're here.

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.