Saturday, May 22, 2010

What we all need is acceptance - for my child

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An honest letter to anyone who knows a family living with Autism...handle with caring.

Dearest Naysayers, well-meaning friends, relatives and acquaintances,

Problem?  Oh yes, we certainly do have a problem here.  Sure, I know my child "appears" normal to you. Yes, I undertand that you see him for an hour once a week, month, or year and he seems just a little hyper or curious to you.  Really, I remember that he's only 4. Yes, I know that little cousin Joey or uncle Simon or your son at his age was a little active, naughty, didn't talk, didn't listen, didn't do well in school - heck nobody even went to preschool in those days, didn't have friends, didn't ride a bike, fell down a lot, didn't look people in the eye, didn't write or color, didn't like loud sounds or harsh lights or crowds, couldn't tell if his clothes were on straight or forwards. Sure, I know your niece Susie or friend's son Tom or your neighbor can switch moods and modes instantly, is stubborn, likes to spin, jump, rock and move all the time, likes really strong flavors, dislikes change and needs routines, loves to get messy, loves to stuff  his mouth with food, has potty training difficulty, enjoys water excessively, doesn't know when to stop with a fun activity, loves animals, has obsessive fascinations, has repetitive habits and movements, has imaginary friends, has limited interests, has limited language and social skills, has issues at school, runs away and escapes often, has no fear, has no sense of stranger danger, has skewed sense of love or hate, has no spontaneous emotional language, is completely self-absorbed, laughs when they get into trouble, shows completely inappropriate responses, seems unemotional or too emotional, doesn't understand consequences and has difficulty with right and wrong...or all the opposites of above symptoms, plus or minus countless others...

But NOT all at the same time in the same little body!

What we all need is acceptance - for my child is the same child as last month, he just has a new label!

I'm so exhausted from dealing with my little puzzle that I surely do not have the energy to defend, explain, or educate everyone that he most certainly does have very serious issues, is on the Autism Spectrum, and is not like ANY OTHER person that any of us knows.  Just as no 2 people are alike, no 2 ASD people are alike either.  I will not feel better until I figure out just what I can do to help my little guy live up to his potential. If it feels better to deny it, or tell me that he does not "seem" autistic, please, please keep it to yourself, or talk about it with someone else.  He is ASD.  I'm validated in this knowledge after fighting for the truth and a diagnosis after years of questioning, researching, worrying. Yes, this is harder on me than anyone else in the world besides my child.  I may be mourning my dream of his perfect life, I may never get past that.  I may be angry, or any of the other stages of grief.  But it won't get better until I try to help him function better.  I don't need denial.  I just won't accept it, though I'm WAY too polite and caring to say so. It hurts me; ridicules my excellent people skills, mothering instinct, and intellect. I know best, and through my efforts and tireless advocating, I'm now backed up by many, many experts. I don't talk about this unless I'm asked*, please don't feel you must give me your opinion, review or critcism of his diagnosis. It is what it is. At this point, I'm dealing with it, and I try not to bring it into other's lives more than I need to.  I don't want sympathy, attention or pity.  Just truth, and not surprisingly that's a moving target like everything else in life.  :}
*except for numerous FB posts/links/profile pix during my phase of acceptance after his initial diagnosis, which also coincidentally was just prior to April, Autism Awareness Month. Yes, I was a bit militant, I'll admit. :} 

What I do want/need is: I want people around us to be aware.  For his safety, for theirs.  Watch to be sure he's acting appropriately with socially acceptable physical, emotional and behavioral boundaries. He particularly doesn't understand babies and animals, yet is fascinated with them.  Help to keep an eye on him while I run to the bathroom or am engaged in something necessary.  If you see him running away and I'm not on his tail as usual, call him over.  If you see him with someone unfamiliar, yell for me or call my cell, PRONTO!  Engage him if you can, give him high fives and ask him about his day.  Show him something that you like, model great social behavior.  Smile at me, give me space if I look like I'm having a rough day.  Understand that it is not you, but life with ASD that is stressing me and making me weary.  Try not to tell me I look tired, exhausted, it just makes me feel really, really ugly.  Be wonderful to my other kids, for their life is so greatly affected by ASD, it tears me up inside.  I try to swing the pendulum to favor them, but I don't always succeed.  Understand if I don't answer the phone, the door, or you hear screeching or stomping coming from my home.  Forgive my poor memory, I have way too many facts, figures, schedules, routines, appointments, questions and chaotic thoughts rambling around in my brain.  Please have patience if I'm not as good a friend as I used to be, or as fantastic about calling, volunteering or hosting. And definitely don't wander into my home unannounced unless you have a seeing eye dog, and no white gloves either.  My life = chaos on so many levels.  I'm getting by one day at a time.   Give me smiles and hugs.  If I look freaked out, chocolate works wonders at bringing a smile to my whole being.  :}
There is no manual for how to behave when this happens to a friend, relative or acquaintence.  I'm not judgmental; and through this, I've gotten worlds better at shrugging off other's judgements.  I'm simply too preoccupied to devote time except the bare minimum.  If I'm talking to you, it's because I've chosen to take my attention off my child for a precious moment, you are so very important to me.  I'm a happy, social person and I miss having great long relaxed conversations.  I hope to return to that luxury someday.  With you.

I have plenty of other conversational subjects...try me...bring it...I'd love a chance to escape from obsessing over every little thing about my child.  Make me take a few hours off to go out for fun.  I need to!

Edit or shred it

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Edit or shred it.  This used to be my motto.  Not so these days.  I went for too many years not writing because I didn't have the time to properly edit my writing.  Not so any more, I'm a new writer.  Real and raw.  I've decided that instead of trying to be cute, creative, or any other synonym I'd love to be associated with, I'd better get real and simply write.  Of course I review and take care of glaring mistakes.  But gone are the days of theme, flow, and even carry-through of complete thought.  This is my time to reflect, a step above perhaps from stream of consciousness journal writing that I enjoyed before parenting took away that precious time in the evenings. 

Now I have to get back to writing.  For me, to be able to purge, to enable myself to look back, to share my emotions, triumphs and setbacks with others.  To tell a story or share something that delights me - creative, silly, sad, touching.  I may well be the only one who actually reads this, which is cool by me.  Even less of a reason to stress over details and wordsmithing. 

So forgive me my raw unpolished posts, and pretend I'm just a friend chatting.