Down with Normal

normal - conforming to the standard or the common type; usual; regular; natural.

In other words; boring.

Two separate events conspired together to get me to dust off the keyboard and write a post. My life is never without some sort of external drama and this week did not disappoint. I work as a job coach for individuals with disabilities and I was meeting with one of the individuals I work with, describing a possible position to him;

Me - "I think you will like it, there are other people with disabilities there."
Him - "You mean they aren't normal like you and me?"
Me(Laughing) - "They have challenges, like we all do."
Him - "Well what kind of disability do I have?"
Me - "You think differently, but everyone does."

I wanted to tread lightly, as I could not tell if he was joking and if he wasn't, I certainly did not want to insult him. When I got home, I thought about it more deeply. Why should I assume that just because me and the other service providers in this person's life found him to have a disability that he himself would consider himself disabled? Why should I assume that he would enjoy working with other disabled individuals?

Later that day, a Facebook Fr-enemy (its a long story, but believe me its better she is my friend than not!) posted something about how she is always down to support kids with disabilities that can't do normal things like other kids can.  That comment really burned me up. What's normal anyway? Who is she to assume what kids with disabilities can or can't do? The comment was meant to be condescending. I'll pass on any support that comes from a place of pity.

It amazed me that in a few short hours, I could go from the in crowd to an outcast. How odd that I laughed at being included as normal with a person with a perceived disability, but was angered by the pity of a person who sees my children as abnormal because she perceives them with a disability. Context is everything. My kids are extensions of me and if they aren't normal, neither am I.

But, I already knew that.

I have never been normal, I spent most of my early life a member of a cult like church with weird rules and beliefs. At 17, I stopped going to church and decided that I would be normal from that point on. That only lasted a few years.  At age 23, my first born was officially diagnosed with Autism. I was initiated into the new world of disability. Yes, in the world of disability, up is down and left is right. You can expect to be asked all sorts interesting questions about your 3 year old child, like "does he start fires and torture animals?" Nothing against any of you parents who do have 3 year old's who do that, but you must admit, that's not normal. What kind of world was I getting into, where that's an appropriate question?

Without skipping too far down memory lane, I can easily say that the normal path has never been my path. It will  never be the path of my children either. Even if they wanted to be, others will not allow them to be. Just like I didn't allow the individual I work with to be normal.

I think normal is one of those elusive concepts that we all try to sell, but none of us really buys.

Normal is a program, an antiquated mode of social engineering, designed to keep us all striving for something that doesn't really exist.

So what should I do? Form my very own Misfit's group and take on Jem's Holograms?

I think striving for normal does a disservice to our families. Normal is not the same as consistency and structure, which are things that can benefit kids on the autism spectrum. As parents we must be open to creating our own family goals and levels of success. For example one of my goals is to be able to leave my kids home alone at some point. Obviously not an issue for other families with teenagers, but a challenge for mine.

Also appreciate the things so called normal families  have to put up with that yours don't. I am proud to say that I don't have to put up with any sassy back talk from my kids, shopping for gifts and birthday presents is relatively easy and peer pressure is not an issue in our home. We also have a lot laughs and celebrations for things that other people take for granted. I stopped dwelling on all the normal things my kids can't do a long time ago. I accept what they can do and keep it moving.

I learned a very valuable lesson; perception is everything and reality is extremely personal. Sometimes it is necessary to blur the line in between in order to get a true picture of who you really are and what you really believe.

Normal? Nah. Who wants that?

Step Into A World......

I tend to complain a lot in my blog post. Ironically in my day to day, I rarely complain at all, preferring to allow most situations to work themselves out naturally, if possible. Writing for me is a catharsis where I can share and develop my thoughts in a way that I can't in the "real world." I realize that this blog serves as a lens into our lives so it is important for me not to overlook the 3 reasons why I actually write this blog. Many times the shear awesomeness of my kids is overshadowed by the numerous challenges we experience and my attempt to understand and overcome them. So with this post, I want to introduce you to.......the kids.

Meet "The Oldest".  He is currently engaging in 1 of 2 favorite activities - eating; the other being 1990 era Disney movie watching. And how does he watch these classics? Blu ray?  Naah, not my son, after going through countless DVD players, he decided that there is nothing quite like the beautiful winding sound of forward and reverse on a well aged VCR. Let's pray the Goodwill doesn't ever run out of VCR's and old Disney movies.
What makes The Oldest awesome?  He is a superb big brother, always looking out for the sisters and he even finds time to help me put the groceries away and vacuum occasionally. Also after eating me out of house and home he always rinses his plates (even if they are paper) and cleans and puts away his silverware and cup.

Next up is "The Diva." I love this picture of her because she has no interest in me taking her picture, but she still attempts a smile, just to make me happy. We had just taken the rollers out of her hair for massive curls. The Diva is fast approaching womanhood and she is really blossoming into a very attractive girl - God help us, to have been blessed with such beautiful kids! When not glamming it up for the camera. The Diva is tapping away on the computer, looking for the oddest uploads on YouTube and fighting everyone in the household for total domination of each media device available. The Diva is very independent and very memorable. When others barely recognize me, The Diva is always remembered and quite fondly, I might add. As mothers and daughter's often do, we butt heads due to my mistaken notion that I am actually in charge, but we always make up and The Diva is a very tender soul who manages to see individuals who might otherwise be ignored and make them feel special.

And last but certainly not least is "The Star." My sweet, attention seeking youngest is the most demonstrative out of the three.  She loves to sing and dance and act and she loves to be the center of your attention. She is empathetic and kind and lives to be in the spotlight. And if that wasn't awesome enough she is my go to girl for getting things done, but only if she feels like it. You may find her creating a crayon masterpiece on the walls of my home or rearranging my books and pictures into little neat stacks all over the floor. Barrettes and glitter, nail polish and lipstick, The Star spares nothing to create sparkle and shine. And drama, oh so much drama with this one!

And that is my crew. They look sweet, don't they?

What makes your kid awesome and how do you remind yourself not to forget it? Feel free to comment and share how you do it.

Falling Through the Cracks; When African American Children DON'T Get Diagnosed

Do a cursory web search on "African American's" and "Autism" and you will notice one clear trend;

Autism Diagnosis Often Occurs Later for Black Children

Under-representation of African Americans in autism genetic research

Autism diagnoses tend to come later for African-American children

We are not at the table. Our voices are not being heard. Our needs are not being studied and our children are falling through the cracks. Okay, okay, so I am a little biased, I have 3 children on the spectrum, so I tend to be a little more concerned than the average parent. This is an issue that is not being adequately addressed.  

First and foremost, let me state what this is NOT about;  its not about money, its not about cures, and its not really about race.  Its about access and outcomes.  If you don't have the access, you don't get the outcomes. Truthfully an African American child on the autism spectrum has no greater special need than a white child on the spectrum. In fact one study suggest that it is actually socioeconomic status not race which determines outcomes for children with autism.

.....children of highly educated parents reap greater benefits with respect to early diagnosis for autism and consequent opportunity for engagement in treatment, net of the severity of their disorder, than those whose parents are less educated. In general, children of high socioeconomic background continue to be diagnosed earlier than the less privileged, and although the gap has diminished it remains significant.

The key is early diagnosis. Children who are diagnosed earlier have better outcomes than children who are diagnosed later. Children benefit from specialized therapies like speech, occupational and ABA based therapies at an earlier age which can be crucial to increasing their later quality of life. Depending on what state you are in, many of these therapies can be obtained through and paid for by medical assistance if you qualify and/or early intervention. Most doctors know about these services and can easily refer children with developmental delays to these programs. Is this where the breakdown begins? Are doctors not referring our kids to be developmentally screened or are parents not informed about developmental milestones? It could be a combination of both.  In my own personal experience, it was I who asked my child's physician for help when my son started to regress. She then referred me to Early Intervention.

It is usually at this point where the conversation stops.  In my research I could find no substantial initiatives to improve the numbers of African american children getting screened for autism.  Why is this?  I have a theory, one I haven't seen readily discussed.

In another sphere there is a campaign to decrease the over representation of African American male students in special education.  Advocates and parents are trying to get our misplaced male children out of special education and back into regular classrooms.  This movement is in response to the racist practice of funneling black children with perceived behavior issues into special education classrooms. The NEA (National Education Association) states on their Blacks: Education Issues page;

Far too often, Black students—males in particular—are unnecessarily placed in special education classes, while the number of Black students who take honors and advanced courses remains significantly below that of other groups.

Hmm?  Now let me think.  What other group of individuals is also overwhelmingly male? Could this be the reason why black parents shy away from early developmental screening and diagnosis?  An unconscious aversion to involving their child in the special education system? As an advocate, I can admit that dealing with school personnel is daunting. For the average parent with no training, the special education system can be extremely intimidating. Even with IDEA regulations, there are some schools that try to bulldoze families into education plans that are far from individual.
Even if the two issues are connected, I can't say with any confidence that this is the primary force in the later diagnosis of African American children. One must also consider the general distrust that Black parents have for doctors;

A cross-sectional survey of parents who accompanied children to a primary care clinic found that 67% of African-Americans distrusted the medical establishment compared with 50% of white parents (P=0.04), Kumaravel Rajakumar, M.D., of the University of Pittsburgh, and colleagues reported in the February issue of Archives of Pediatrics and Adolescent Medicine.Distrust was inversely associated with education, so that while 74% of black parents who had less than a high school education were wary of doctors and researchers, only 44% of those who were college graduates shared that feeling (P =0.03), the researchers found.

- African American Parents Distrust the Medical Establishment 

Here we are back to the education of the parent; one of the leading predictors of socioeconomic status, driving the issue of trust in the medical establishment for black families.

Unfortunately, we don't have an autonomous black community where we are all on the same page when it comes to the social issues that effect our families and even if we did would this issue even rate in the top ten of "black issues?" No, I don't think it would.  Here is why it should.  The latest data from the CDC state that 1 in 88 children have been identified with an autism spectrum disorder and in the black community 1 in 98.  I am not trying to scare anyone, I hate statistics. What I hate even more is people falling through the cracks of society - a nonverbal adult who was never given access to assistive technology and has no functional communication skills other than vocalizations. Or teenagers with severe behavioral issues being heavily sedated and restrained. I can't tolerate vibrant and intelligent individuals that have the potential to live and work in the community being underestimated and stifled.

So with all this talk, do I have a solution? Yes I do. Of course I do. In researching for this post, I noticed a number of splinter, grass roots attempts to address this issue. I believe that all of us who have been working on a small scale in our own communities should band together and form a greater network to start creating our own PSA's and materials to disseminate nationally. This campaign has to go hand in hand with an advocacy component to address the misuse of the special education system as a warehouse for "problem" black youth. Possibly creating a parent curriculum on how to navigate the special education system and advocate effectively for your child -- one for parents of children who need special education and one for parents who are trying to get their child out of special education. In addition screening must be culturally competent and be able to get to the families who aren't seeking diagnosis due to fear or mis-education. Also, let's not forget about our Hispanic brothers and sisters (an incidence of autism of 1 in 127) whose children are also diagnosed much later and whose presence is also missing from the table.

No more kids falling through the cracks, Autism Awareness, now in black, brown and yellow.

Please comment and share your ideas or techniques to build autism awareness in the African American and Hispanic communities.

Statistics from - Autism Rates Rising Sharply, CDC Reports and the CDC

Models of Disability; Models for Autism

Is it relevant to know what someone's context for disability is?  Do you think it affects treatment, service and care?  I do.  I think that no matter how educated or impartial a person claims to be, there underlying views come through even when they are not supposed to. Check out the show  - and share your comments below

You Know Your a Difficult Parent When.......

Back to school can also mean back to IEP (Individualized Education Programs) meetings with the school district for many parents with special needs children.  I already have 2 scheduled for the end of next month.

I was talking to a friend this morning who was on her way to her child's meeting. We were discussing ways to say things and later I got to thinking, "am I a difficult parent?" One of my child's teacher left our school district over the summer so my daughter started school with a brand new teacher who I haven't met yet.

The paranoia in me started to flow; "I wonder what Miss X told Miss Y about me?" Exchanges from IEP meetings past started flowing into my mind and then I was faced with the possibility that this particular teacher may have thought I, little old me, was difficult. I am older (and hopefully wiser) now and I can see where and upcoming meeting with me may have been something to avoid.

For the podcast; Are you a difficult parent? I discussed one person's opinion from a blog I read in my search on what makes a parent difficult. I didn't necessarily agree with her reasoning, I thought the author was a little heavy on the parents. I apologize for the sound during the broadcast.

Not wanting to revisit what was covered on the show, I decided to make my own list of how to tell if your a difficult parent from a humorous point of view.

You Know Your a Difficult Parent When;

- school security comes to greet you at the door

- your child's teacher ask to record all your phone calls

- other teachers and staff who don't know your child, know you

- your IEP meetings are scheduled off school property

- the phrase "calm down" is used more than once

and last but not least

-your child's teacher moves out of the district over the summer to avoid dealing with you!

That's my little list, hope it made you laugh and I hope it made you think.

Seriously, I stand behind parents whole heartily when it comes to dealing with school personnel.  I know just how tough it can be to constantly request the things your child needs and be ignored, dismissed and condescended to. Every once in awhile, you do need to put the niceness aside and get real in order to get your point across.  The key is not to do too often and to make it count when you do it.

The key thing to remember is the people sitting across the table from you are human, they deal with the same seven deadly sins we all do; greed, sloth, wrath, pride, lust, envy, and gluttony. I try to give teachers as much respect as possible and I always reward effort, even if the results are little to none. A willing party who is willing to think out of the box is the most important characteristic in a special education teacher.

But that's just my opinion, tell me; one are you a difficult parent and two, what do you like to see in your child's teacher?

Comment and a Lisa Frank unicorn will knock on your door tonight.

Doesn't get any better than that, does it?

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.


Listen in Thursday 9AM - Only on You Aut to Know Radio
Listen to last weeks show

and please Comment, Comment, Comment!

"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.

Do you ever just want to give up?

Its been awhile. I haven't written or done a show in ages.  I just needed to vent. My children are growing everyday into young adults and I feel as if I have failed as a mother in so many ways. I try to make the best decisions, but sometimes, even my best efforts are not enough.

Summer is traditionally a hard time. No school.  The kids have ESY (Extended School Year) until noon, but because of the lighter schedule, their energy just seems to be boundless.  I have two young adults and one child and the fighting and bickering is intense.  Verbal, no, but the screaming and crying is enough to drive me insane. I feel limited to the house due to an incident earlier this summer where my youngest left the yard and went on an adventure.  I had to call the police to help find her.  My neighbors were fabulous, everyone pitching and volunteering to look for her.  I was so impressed and thankful to be around such caring individuals.  The next week, my two oldest wandered away from me at Walmart for over 20 minutes.  I am not negligent, in both cases my attention was diverted for mere seconds and they were gone. My kids need 24 hour supervision. I can barely leave the house to put the trash cans to the curb without returning to a mess, an argument or whatever.

There is a storm in my home and I have no idea how to quell it. Limited finances and the oppressive heat make it difficult to go out, so it feels like we boil inside. For the first time, I feel as if I am not equipped for this. Because I just moved back here, I do not have all my support systems in place, i.e. wrap around and respite.  I have my parents, who are always helpful, but I don't want to rely too much on them as they are getting older and they are entitled to some child free time at their age.  They raised their children, I guess.  Sometimes I feel as if my childhood is extended, because of how much I rely on them.

As an advocate, admitting defeat or a less than positive mental outlook feels incompetent. The challenges I faced when my children were younger seem like minor bumps compared to what I am going through now. Its mostly emotional and mental. I am really questioning what kind of future they can have. Without language and social skills, this world is hard to navigate. Some days I feel trapped, even with positive things happening in my own career. I would give anything for them to progress. Writing is an outlet.  I don't care what others think of this post.  I just feel so alone. My husband, as an extreme secondary caregiver has a great attitude about it.  He is not here most of the time. He has the amazing ability to under view the situation. He feels I am extremely tense and believes it is my attitude which is effecting their behavior.  He is probably right on some level, but when do I ever get out from under the pressure? The most I have been away from my children in the last three years has been 2 days. And when I am free I can barely decide which loose end to tie up.  Should I clean up, should I pamper myself, should I organize my mountains of paperwork?

The funniest thing I ever heard was when I went for an intake assessment for one of my kids to get services. I was inquiring about a greater level of service that may be more effective for my situation; having the 3 diagnosed with autism.  You know what the evaluator said to me?  She said, "oh I have at least 20 other families in your situation, I am going to see a family with 4 kids on the spectrum after I leave here, you are not alone." How the hell does that information help me?  Is just the sheer knowledge that 20 families are feeling just as isolated, scared and under-equipped as I do, supposed to make me feel better about my situation? It doesn't. In fact I now feel sorry for them too.

I have tried to justify and give my circumstances a purpose through hosting the radio show and writing this blog and by creating a non profit, but it doesn't take away the ache. As I watch friends and cousins children grow up and mature, play sports, talk, date and just plain live, I feel as if my parenting experience is flawed and invalidated.  I have mentioned feeling like a genetic failure before and it has never hurt so bad as it does now.  Its getting harder and harder to explain away the loud screams and strange verbal exhalations.  I scowl at the the other patrons in the stores as they look quizzically at my children. I border on verbal assault to the overly friendly people who try to talk to my kids when we are out.  I hate that sickening silence when they ask my children a question and there is no answer.  I just let it hang there and I watch how they socially navigate a child just staring at them with no intention of giving a response. I get so tired of saying "he/she won't answer you, they are autistic."

I'm already tired and this is just the beginning. I don't even want to be around other parents with autistic kids. I feel like they are coping so much better than I am. I know that may or may not be true, but I don't feel like comparing notes anymore. I am hard pressed to find the beauty in what my kids do.  To explain away their differences as blessings, eccentricities, and challenges.  They are disabled. It doesn't mean they can't ever do, I know that. But really in our society how far have we come in really integrating, accepting and embracing people with disabilities?

I blasted someone on Facebook for making a senseless remark about people with autism being genetic failures? Not just for his total disrespect, but because, even with three related children, I still feel that they are injured individuals suffering from a reaction to chemicals which they should have never come in contact with.  But what is that?  Is that just crazy to believe at this point?  Here I am, a poster family for a genetic cause of autism, still rolling with the vaccine injured crowd. Keeping them on the gluten and casein free diet because of an improvement I saw years ago. Not getting them vaccinated for fear they could get worse. What the hell am I doing? Let them eat cake! Right? Wrong? I don't know.

I write this not for anyone's pity or awwws, I write this because I must. Nothing is worse then the pity I receive when I happen to tell outsiders about my kids. I have become such a hard mother. I don't even feel any tenderness in my heart anymore.  I feel like a caregiver, a nurse doing the same things everyday.  "Time to get up-time to get dressed-your shoes are on the wrong feet-stop crying-your shirts on backwards-stop hitting yourself-take that out of your mouth-quiet hands-settle down-focus-close the door-get out of the refrigerator-wait-stop-lets go-time for bath-good night."  Barking off one word orders repeatedly. Wondering why they didn't get it 4000 times ago.  Wondering why my kids lose their skills faster than they gain them. Beating myself up for moving away, throwing them all into regression and sub par schooling. Wondering why it takes more than a mother's love to heal their wounds. I tire of asking the same questions and getting no answer. Plain old obligatory parent questions like; "how was school, are you okay, why are you crying, are you hungry, does it hurt, do you know that I love you? Please tell me something, anything. Then there are the moments when they do answer and I keep asking them that same stupid question over and over just to hear them say it again.

Things aren't supposed to be like this.  They aren't supposed to feel like this.  I hate myself for emotions I can not create and more so for the emotions that are truly there. I want so badly to see the peace and joy and meaning of it all, but I don't. I really don't.