Do I sound angry?

Why do I write? Its a question I ponder frequently. I look at the world and I want to comment on it. I have always been first and foremost a writer. I am not particularly beholden to grammar and style as I have issues with authority, but I do like passion and sentiment. My biggest fan and critic (my mother) told me that in my first show I sounded angry. Anger. That's an all too familiar emotion. Obviously, it is not my intention to sound angry, but I am angry. This blog is about my perspective on autism.  I feel that as a black woman in america, my voice and experience is underrepresented on this issue.  I know, I know there are a number of celebrities who are also black, that are active in the autism community.  This blog is not really issue driven.  What I mean when I state that is, I am never going to take up a particular side for or against certain hot buttons prevalent in the "autism community." Why? I find it difficult to see things as black or white. Everytime I try to delineate a right or wrong way to feel, the foundation on which I based that decision is shaken. I don't take that for granted. I am what some might call superstitious when it comes to certain events.  For example; lets say I am on my way to a meeting and during the course of my drive, I run into a detour, road block or extremely slow driver, instead of throwing my hands up and getting upset, I say "I am not supposed to go that way, I will take another way."  The thought being that the divine universe has compiled a number of messages to send to me so I can avoid danger. All this to say that, whenever I have chosen to align myself with a certain idea, that idea gets challenged.  One might suggest that I need to be

Check out my trailer for the radio show.....

Where to Put your Guilt

When I moved my family to Delaware 2 years ago, I thought I was prepared. Actually, I pretended to be prepared, but I really wasn't. I wanted to move, that was my primary motivation and I hoped that things would positively fall into place. They didn't. Had I done my research, I would have known that the state I was moving to did not have the resources and supports I had grown accustomed to in the great state of Pennsylvania. For one their behavioral health system was not really autism friendly. In fact the school told me that the state did not even have a behavioral health system, which I later found was not true, but I could see why the director told me that because it is only "really" available to those children who are a danger to self and others. I also did not know that the school district and special education program I was sending my children to was not very parent friendly. At least they weren't to me.

Here is the real important question; had I known all this before hand, would I have moved? Yes.  Why?  Because I wanted to move. And that's where the guilt comes in, at least on this issue. I personally was thinking only of my own desires to advance myself even in this small way that I risked my kids educational and mental health. As a result the kids have regressed.  Yes, I moved back to my home town, but the damage is done and now we are two years behind where they should be. Is this the worse thing I could ever do them? Not really, but you can't tell me that when I am beating myself up over it because my 7 year old can't read and can barely count.

Why continue to harbor the guilt? What use does it serve me? These are the questions I struggle with daily.  I know that I am not alone. When I talk with other parents they have similar tales of making lefts when they should have made rights. Guilt is a natural human emotion. The problem is when it becomes crippling, causing one inaction and fear of taking risk or to try something different. As parents with children on the spectrum one decision means so much; do I continue with this ABA program, should we focus on sign language or picture exchange, is it right to let the school district cut my kids speech? All these decisions have dramatic and varying cost associated with them.  Cost that could either bring positive skills and benefits or cost that can spiral into bad behaviors and regression. Because of the nature of autism, no one child is the same, no one program will have the same effect. What is a roaring success with one child, could have horrible consequences for another.

So what can we as parents do to not allow guilt to freeze us in place? I have a few suggestions.

1. Embrace the guilt
You have to. There is always going to be some new this or some new that coming out which allowed little Sally to speak for the first time and you were the last to know. In sales, its called "Fear of Loss." Its a sales technique to appeal to our natural desire to not be left out or not be able to have what we want. It's great if you need more commission, but sucks if your an overwhelmed parent who wants to ease your son or daughters burden. Don't believe the hype of every new widget that pops up in your inbox.  That's all it is - hype, designed to generate sales and interest. If you embrace the guilt, then these sales ploys will have no power over you.  You are doing the best that you can, I am doing the best that I can, there is no possible way I could know that XYZ therapy, device, supplement would work for my kid and if its too late, then ITS TOO LATE!

2. Stop caring about what ANYONE thinks
My favorite vice. I soooo care about what people think. I care about what people are going to think when they read this post, I care about what my neighbors think when my children are screaming, I care about what my family thinks, I care about what people think about my weight gain, I care about what people think about my hair.  I care, too much.  And if I'm right, so do you. My kids attract attention, where ever we go and you know what I noticed? They don't care. They scream and run and enjoy themselves.  They could care less if mommy is embarrassed. For the life of me, I could not figure out why they have no shame.  But do I really want them to have shame?  Not really.  Shame sucks. I have enough shame for all three of them and I think I would like to keep it that way.  Shame is what keeps you in your house when you should go out. Shame is what keeps you from speaking up. Shame is guilt's best friend. Whenever you allow what other people think of you to determine what your going to do; ask yourself, can they do what you do, can they walk in your shoes?  Most of the time, they can't. And if they can, just imagine something shameful about them and move on with your life.

3. Don't pretend to be fine if your not.
There are no prizes for the most optimistic parent. There is no governing body that will award you for grinning and bearing it. If you are not happy, then don't pretend to be. There is nothing worse than talking to someone who's engulfed in flames and they are claiming; "no....I'm not hot at all." We all need help sometimes, and we all need someone to bitch to. There is nothing wrong with that. You are not doing anybody any favors by pretending that your situation is not as dire as it looks. When you aren't real about what's going on you are only hurting yourself. Its the worse form of isolation. No one cares, because no one knows your drowning.  Guilt will keep you from asking for help because you feel you don't deserve help. And why don't you deserve help or compassion, oh because you brought your kids disability on yourself, right?  Its all your fault and you deserve whatever comes with that? Wipe that grin off your face and the next time someone asks you how your doing tell them, you may be surprised at the response.

I will be the first to tell you, I am no expert. I see things the way I do through trial and error. Like you, I never asked to be in this position or to deal with the varied challenges of raising three children on the autism spectrum.  I struggle everyday to make peace and find balance in my mind while trying to be an effective mother to my kids.  I know I have failed many days and I know there will be future failures to come.  I just try to remember that its not always my fault and that one day I will truly embrace my new favorite quote;

"Nor had I erred in my calculations--nor had I endured in vain. I at length felt that I was free."

In its original context this quote has nothing to do with guilt, in fact it is an expression of attainment. Taken from Edgar Allan Poe's, The Pit and the Pendulum, the narrator believed that he was free from his tortuous experience with the Spanish Inquisition. As this has nothing to do with guilt, when I read the quote, I felt a strange identification to the sentiments in my own context.

At the end of the day, I as a parent want to be free of shame and guilt, knowing that I had not "erred in my calculations or endured in vain."  As parents the antithesis of the guilt we feel is acceptance.  We must accept that there is no going back and that is not a bad thing. Don't mourn for the actions you did not take and the life you did not have.  Embrace your kids and accept that this journey we walk together is not for the faint of heart, but the for the over-comers, the endurers, the people who stick it out no matter what.  That's you.


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"Mind Stealers from Outer Space" and other acceptable excuses for my behavior

"Mind Stealers from Outer Space" and other acceptable excuses for my behavior

I’m trying this podcasting thing out again and here’s why; I love to talk! Ask my mother and my husband, they can't get me to shut up.  For a shy person, I really have no problem talking to myself.

Since I put the show down about 2 years ago, I have really missed the interaction I have with people and the insider information I obtain as well.  When I say “insider,” I just mean insight into how other people live, think, and behave. I have had so many changes occur in the last 2 years, too numerous to mention in one post, but believe me, it will all come out in the future shows. 

This upcoming episode – “Mind Stealers from Outer Space” and other acceptable excuses for my behavior , I will be chatting about; back to school - Autism style, how to retrieve your mind from outer space, updates on me and my crew, and interesting stories from around the web.

First up to bat, I want to talk about my take on the FDA allowing trials with cord blood stem cells and individuals with Autism, I am positive it is not what you think.

Next, I want to go over the upcoming Back to School holiday. What? You didn’t know it was a holiday and my house a HOLY DAY.  Yes I will teach you about the ritual that is called Back to School – Autism Style.

And last but not least, I will discuss my previous pitiful post as well as how to properly retrieve your mind from outer space.

If you will be joining me live;

Listen in at 9 AM Thursday August 23, 2012 - http://www.blogtalkradio.com/aut_toknow/2012/08/23/you-aut-to-know-radio

Add your point to the view by calling – 347-996-3422

Show is 30 minutes long.

You may be asking, “why the early time?”  What I did learn from two years ago is that most of you listen to the show by downloading it after the fact, so the actual live recording time is irrelevant.

Reach out to me at:

aut.toknow@gmail.com

• http://auttoknow.blogspot.com/
• http://www.twitter.com/aut_toknow
• http://www.facebook.com/nicole.flamer

Changing Energy

This summer was rough.  With moving, new school, ESY, new job, puberty(menstruation), marriage issues(as always); I am glad that we will be heading into a consistent structure.  My last post Do you ever just want to give up? my cry for help which no one heard, was quite the unload.  I can honestly say the sentiments expressed in the post are no longer relevant.  At least not until next summer.  Now we are facing the beginning of transition for my son and to see how many skill were lost or maintained over the summer.  The job goes into full effect with my availability increasing and move in is officially over.

I also feel a bit more peaceful.  I am focusing on getting healthy (code word for diet) and I am going to finish my book.  Where we go from here is anyone's guess.