How to be a Mother. In case you were curious.

How to be a Mother; from the mother of 3 on the Autism spectrum

This Mother's Day weekend, I want to share my perspective on mothering by way of having 3 children on the Autism spectrum.

About 16 years ago, when I first was initiated into motherhood (i.e. by being pregnant,) I thought being a mother would be easy. You really have to love the naivete of a twenty year old girl. I had watched other girls and women effortlessly give birth to amazing, perfect children and I had no doubt that I would as well. That is exactly what I did. My newborn son was the joy of my life, my raison d'etre, the apple of my eye. Everything he did was amazing and I couldn't even remember my life before him. I still treasure those early gifts of motherhood, watching your child learn and grow and being totally amazed by what you created. It was so empowering, I felt like a god. No, I was God. Next stop, reality check.

At this point you can insert my-your-our Autism intro story. Regression, blah blah blah, search for answers, blah blah, blah, diagnosis, blah.

Here is where it gets complicated; not unlike many other Autism parents, I mourned the loss of what I didn't have. I was sorrowful, I blamed myself.
I also stopped being joyful and became an emotionless task master. I threw myself into autism research and treatments. As my 2 subsequent children were also diagnosed, I started to feel less like a mother and more like a caregiver in the most disconnected sense of the word. Did I love my babies? Of course, without a doubt, but I found it very difficult to find joy in my situation.

Unfortunately I was trapped by the idea of what I perceived I lost to Autism. Children can represent so many things for parents. They are the connection between you and your mate,  the unrealized dreams for the future and most importantly they are your legacy. My kids represented my footprint on this earth, my genetic contribution to the world narrative. They would carry my story long after I'm gone. Maybe. Maybe not.

Sound a little pitiful? I was.

I started to look for the meaning of Autism. Why me? Why them? Was there a greater spiritual purpose to being Autistic? I certainly would like to believe so. I don't think its my place to decide especially since I am not Autistic. I will never truly understand how my kids see the world and their place in it. It dawned on me that my sadness was inappropriate. I had allowed myself to become wrapped up in the identity of Autism. In my search and struggle for meaning I could now see that I needed to separate myself from the concept of autism, disability and ability all together.

I am a mother, their mother. Their only mother, no matter what. Labels and perceptions are unimportant. I don't know how it happened, but I figured it out. I am still me. Yes, I am a mother, but I am still me. I don't need my kids to carry my legacy, because I can carry my own and they can carry their own and neither has to be connected or related even though it is. The point is it doesn't have to.
Guess what, you don't have to live for your kids, be responsible, take care of them, yes, but you really need a life of your own, totally unrelated to your offspring.

Kudos to you who got it early on. I am not ashamed to say I didn't. Life is a journey, our experiences can take us so many different places. Places we may never have gone.

Am I tired? Yes. Am I overwhelmed? Hell yes. Is it worth it? What is "it?" If "it" is the experience of being on the ride of a lifetime, then yes. If "it" is some inane idea about sacrifice and oblation, than no. Raising children is not about sacrifice, its about responsibility. I always wanted children, I have never sacrificed anything about my life for my kids. I hate when people use sacrifice and children in the same sentence, it makes it sound like you are doing something different than 5 zillion other parents. I make adult decisions and sometimes I make child decisions, but sacrifice is for saviors and I am no savior. I'm no saint either.

My perspective has been forever altered, in a good way. I have met wonderful, amazing people that only exist in the autism world. I am blessed, because my kids will never be pawns and I can never live vicariously through their exploits. Not because they don't have them, but because I don't want to. Frankly my kids have some pretty amazing experiences and they get to do very cool things. Guess what? So do I and so will I.

People want to see the tragedy of our story and there is nothing to see. Sorry, no trainwreck here, keep moving no car crash to see. Yes we do have our Autism themed emergencies; wandering, meltdowns and communication difficulties. So what? What family is without blemish?

I am a damn good mother. If I do say so myself. I am proud of me. My kids adore me, despite my early doubts and confusion and my crew is awesome.


How to be a mother? Be yourself. Do you. Not in the irresponsible, unfit parent way, but in the confident, loving and healthy way. Release your expectations stand back and let your children blossom. They chose you for reason.

Happy Mother's Day.

1 in 68, So much for awareness....

Today the Center for Disease Control's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network released a study stating that 1 in 68 children are diagnosed with Autism. Not only did the report show a 30% increase since its last estimate of 1 in 88, but it also provides a new profile of autism.

10 Things You Need To Know About CDC's Latest Report from the Autism and Developmental Disabilities Monitoring Network

I don't know what to say. How far has Autism Awareness gotten us? Awareness is great. Awareness is necessary, but at some point, we as a society need to make a decision. How are we going to deal with the increase in incidents of autism? The data used to determine the new rates was collected in 2010. Autism "awareness" was well underway. The non-profit I helped to create in 2006 was one of many other awareness organizations providing information to parents. There is something going on here that can no longer be ignored.

If its genetics, you mean to tell me that every 2 years more and more people are becoming more genetically predisposed to having children with Autism? Is that possible, does that make sense?

I don't have much to say. I would like to see a cause explored that doesn't conveniently pass the buck to genetics.

Link to the study below;

Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010

2 Things

Mutants? Contagion? I just brought her here for a physical......

For the last two years, we have been medical fugitives, only coming out of hiding for absolute serious, mom cure resistant disorders. Despite much resistance and procrastination, I made 3 appointments for the "annual physical." If I want to qualify for respite or for the children to participate in any type of extracurricular activity they need a current physical.

Inevitably, the conversation always takes a turn to that issue, which can not be named. The V word. Vaccinations. It would be great if my kids were up to date, sure no problem. My kids aren't up to date due to my choice not to get my kids vaccinated.

Again.

Ever.

At this point you are either clapping with me or wondering where my brain is.

I used to care about the latter. I don't anymore. I make decisions for my kids based on the information I have read and what I have seen since accepting the red pill.

This is your last chance. After this, there is no turning back. You take the blue pill - the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill - you stay in Wonderland and I show you how deep the rabbit-hole goes. - Morpheus, The Matrix

None of the vaccine pushers are coming to babysit my 3 kiddos on the spectrum or pay any of my bills or support me in anyway, so their opinion is as relevant to me as burnt toast. I realize that by coming out of the vaccine closet, I may lose followers and readers, but it is more important for me to share the sentiment than hide for fear of backlash.

I have a hard time with people who completely lack compassion and just want to bully you into an agenda by calling you stupid. I know I am not stupid, I can read a research study.

This post is not really about the ongoing debate, its about what happened at the doctors office today.

So as usual, I let the doctor go on about her opinion that all the studies refute the connection between vaccines and autism. Me; no comment. She continues, by going after my desire to not see my child die from a childhood disease. I say "my children have been blessed with amazing health and their natural immunity has protected them" and she counters with "maybe they are benefiting from everyone else's vaccine induced immunity." I shrug. She looks at me and I see her eyes roll back and reach into her mental bag to pull out the "big guns."

Now for 2 Things most parents of so called typical, non autistic children never have to hear;

Thing #1
Me: I read the reports from both sides and I just can't be sure that vaccines didn't have something to do with their condition. This is the only thing I have control of.

Doctor: I understand but most of the research says it is genetic.

Me: Genetic? If that is so why is that I am the only one in my family and my husbands family that has children with autism? No one older and no one younger. Wouldn't we see it in other parts of the family if genetic?

Doctor: It may have been a mutation in your DNA that you transferred to your children.

Me (IN MY HEAD): Damn it, there it goes being my fault again.  If I caused the mutation then why couldn't I be an X-Men like Storm and why can't they be like Wolverine, Rogue and Jean Grey?

Me (OUT LOUD): Oh so something happened to me environmentally that mutated my DNA and passed on autism to my kids?

Doctor: Yes. No.... I mean we don't know what caused your mutation, it could have been environmental or anything. We just don't know.

Me: Oh I see.
Me:(IN MY HEAD): We don't know why its all of a sudden genetic, but we know its not the vaccines, that makes perfect sense.

Thing #2
Doctor: Also we want to keep our other patients safe.  If your kids aren't vaccinated, they could pose a risk to other children, babies in the waiting room.

Me: My children rarely if ever get sick. They are in public schools where they are exposed to measles, chicken pox and the flu. They don't come home with it or pass it on to anyone else.

Doctor: --uncomfy smile-- Well our policy is....(she stops and I believe rethinks dismissing me from the practice.)

This is a difficult conversation for both of us.

Me: I know.

I have heard these "2 Things" before. Once upon a time I would have gone head to head with this doctor about the issues and my rights. I am older now and it is not advantageous to me to be right. I'm tired of burning bridges and looking like a lunatic. Any doctor I go to after this will require that I vaccinate my kids, at least I have a history with this practice. I am not trying to recruit anyone to my side, I just ask for simple respect.  I don't want to be a mutant or have mutant kids and the last thing I want is for my house to be ground zero of the next contagion. They already blamed us for a recent whooping cough outbreak (even though they admitted that their new and improved vaccine isn't effective in preventing it.)

In my short time on this planet I have come to realize that there are no guarantees and there are many things labeled as safe that were then found to be quite unsafe.

You may be wondering where I take my brand new twins for well baby visits?  I take them to a sustainable, holistic doctor, who is not covered by insurance, which means, I have to pay him out of pocket. Would you like to know what our last conversation about vaccines consisted of?

Holistic Doc:  We should probably talk about vaccines, what were you thinking of?

Me: I don't want them.

Holistic Doc: Okay, but you may want to consider the Whooping Cough due to the recent outbreak, its fatal in infants and the Tetanus.  The other ones you could really do without.

Me: Okay, I will think about it and we can talk about it next time.

If only I could afford to take all of them there.

So, general public, here are 2 Things I can promise you;

• I won't send my kids to school with your kids when they are sick.

AND

• I won't let my kids use their mutant super powers in public on you regular humans. 

Honestly, that's the best I can do.

5 Secrets to Successful IEP Meetings

I am procrastinating. I am supposed to be preparing for my daughter's early morning IEP and instead, I am writing this blog post.

I got to thinking about what makes an IEP meeting successful and I came up with 5 things I personally strive for when I walk into my child's classroom. Now remember, I have three separate IEP's to pay attention to, so I have a little bit of experience in this area. Just a little.

Secret 1
Always Get A Draft - Yes, you can get a draft of the IEP ahead of time. Its important to ASK for it ahead of time as well.  Teachers are just like you and me and they can get swamped and do things at the last minute, so you want to tell them you would like a draft to review before the actual meeting.  A good time to ask is around the time you get your IEP invitation.  This gives them time to get it ready and get it to you preferably 5-7 days before the meeting. During that time you can review it, highlight it and write down your questions early. Then you can confidently walk into your child's meeting totally prepared like a pro.

Secret 2
Put It in Writing - How many times have you had a conversation with a teacher either on the phone or in person and you swore you asked for XYZ and the teacher said, "sure, yes, no problem," only to find weeks later that XYZ was never entertained, worked on or done? It happened to me more times than I care to remember. Don't dare bring the XYZ (undocumented) conversation up at the IEP meeting. I'm sure you may have received a response similar to this; "ah well, Ms Flamer, I don't remember us discussing that blah blah blah, we are working on this goal." Does this happen to you? Well not anymore, because from now on everything and I mean everything will be in writing. Maybe you don't have time to draft an official letter? No problem an email will do, or my personal favorite, I write it in the communication book and make a copy of it. If  I don't see any movement in a week, my teachers get a call and a reminder and a copy if necessary. This secret can also be entitled "Get In Writing," as you always want to make sure any promises, proclamations and plans the school makes are in writing as well.

Secret 3
Travel in Pairs or More
I learned this the hard way. Little old me walked into the school for a meeting that I thought was going to be simple, quick, and short. I turned into the classroom to see the teacher, the principal, the guidance counselor, the school psychologist, the speech therapist, the occupational therapist, the butcher, the baker and the candlestick maker. Since this wasn't an official IEP meeting I was only expecting the teacher and the speech therapist. Here were six representatives from the school, who had already discussed what they were going to do with my daughter, ahead of time, with out me, now all talking at me. To say I was just a little intimidated would be an understatement. So from now on I travel in pairs or more. Ambushes are best handled with back up.

Secret 4
I Know its a Pain, but you will Explain
Not all teachers and professionals are like this, but occasionally you will meet the rare arrogant, jackass who gets off on using professional jargon and acronyms like everybody is supposed to know what they mean. A lot of teachers and therapist have had cultural sensitivity training and are aware to not overly tax parents minds with terms they are not familiar with. After doing this for awhile, you do start to understand these terms, but even I, yes I, Miss Know-It All 2013 will ask someone nicely to explain what exactly MDE (Multidisciplinary Evaluation) stands for because sometimes I forget.  As parents, we don't use these terms on a daily basis and its ridiculous to expect us to bring our Special Ed to English dictionary with us every time we meet with our kid's team. So don't be ashamed, if you don't know, but make them explain.

Secret 5
Tell Me Something Good
Yes, I'm talking about the song by Rufus and Chaka Khan (a noted supporter of Autism, I might add). I hate absolutely hate to go into an IEP meeting and hear nothing but what my kid can't do. How bad their behavior is and how difficult it is for them to do AB and C. No, I won't stand for it.  You must "Tell me something good" about my child. If you don't, I will and it will be written in my parent statement that will and must get added to the IEP. Individual Education Programs do not have to be a short story on how behind little Jimmy and Sally are. They can be plans that build on strengths while identifying challenges.  ALL our children have strengths and these things need to mentioned if not promoted throughout the IEP.

These are my 5 secrets that get me through my 3-9 IEP meetings a year. I do have to mention that this year my kids have phenomenal teams and so far I have only been to four if you count the one I am going to tomorrow. For more insight on what goes on behind the scenes check out "What Really Goes on Behind the Scenes of an IEP....."

Please share some of your "secrets" in the comment section, I would love to hear them, I can always add something new to my repertoire.

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

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?

"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

Captain Obvious Speaks - The everyday routines of families of children with autism: Examining the imp...

New Blog Series - Captain Obvious Speaks
I love to check out the new research studies that come out on Autism. Mainly because they are very obvious and wonder how these researchers are coming up with topics to study.  Check out the first of many.


Yes, when the kids start to meltdown, the last thing I want to do is take them out. 

Sent to you by You Aut to Know! via Google Reader:

The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family

via Autism current issue by Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., Benevides, T. W. on 6/13/11

The purpose of this qualitative study was to explore the lived experience of how sensory-related behaviors of children with autism affected family routines. In-depth semi-structured interviews were conducted with four primary caregivers regarding the meaning and impact of their child's sensory-related behaviors on family routines that occurred inside and outside the home. Findings indicated that sensory behaviors are one factor that limited family participation in work, family and leisure activities; and that parents employed specific strategies to manage individual and family routines in light of the child's sensory-related behaviors. This information has important implications for professionals who work with families of children with autism to decrease caregiver stress and to increase life satisfaction for the child and family.

Things you can do from here:

• Subscribe to Autism current issue using Google Reader
• Get started using Google Reader to easily keep up with all your favorite sites

Work/Life Balance; money vs motherhood

I am working on the topic for this weeks show.  It comes directly from my life.  Last week I missed my oldest son's IEP meeting.  I knew it was coming up, but I forgot when it was.  I have been stressed out from my job and working overtime, so much that I really don't know when the last time it was that I read a communication book entry.  My hubby is really a novice when it comes to advocating for the kids and leaves it to me.  


I have been getting to work late and was just put on notice that I need to clean up my act. So of course, I re schedule the 2nd part of my son's meeting at a time that will make me 2 hours late for work.  I am not used to this.  Last year I could make any meeting, but of course I was making below minimum wage and living with my parents.  Now I have my own household, with bills to pay and again, I find I am faced with a money vs motherhood crisis.


What to do?  Let's talk about it tonight at 6:30PM EST only on You Aut to Know!
Call in - (347) 996-3422
also on twitter - @aut_toknow


I feel like this.....

Join the You Aut to Know Mailing List

I miss it!!!

Its been about nine months since I last posted.... and I miss it terribly.  I miss doing the show and most of all I miss sharing things about my life through the blog and the show.  So, I decided, to start it up again!

Things will be a little different this time around.  There is a saying, about walking a mile in someones shoes and yes my feet are tired.
I have a totally different experience that I want to share with other parents.

A little re cap
I have 3 kids on the autism spectrum.  Last August, I had an epiphany of sorts, that happened to coincide with my new job.  Previously I had spent the last six years being an at home mom.  With the kids needs I found difficult to hold down a full time job.  With my youngest entering kindergarten, I thought it might be a good time to go back to work.  And it was.  Not only that I reconciled with my husband and I moved to another state.


Change, change and more change!  Surprisingly the kids handled it better than I expected.  But the road has not been without its bumps and bruises.  All detailed in my upcoming radio broadcast.
The life of working mother with kids on the autism spectrum is dramatically different than the life of mother at home.  No brainer, right?

At the onset of this shift, I had altered my long held views on autism and how I processed the children's label and abilities. Most of these realizations have not changed, instead, I would say they have been enhanced.
I am no longer the advocacy aficionado I once claimed to be.  In fact I probably need an advocate(more on that in a future post!!!!)  In the upcoming shows and post, I will be learning as much as I am facilitating.  I welcome this new role and I can't wait to get started

I have no guest planned for the next show.  It will be me in a shorter segment of time, but what I hope to share with you will hopefully be uplifting, encouraging and brutally honest.

So if anyone is still reading this blog and wants to listen to the next broadcast, welcome!

See you Sunday, time to be determined as the rules and regs of the platform I use for the show have also dramatically changed.

If one thing is constant its change, whether we like it or not.

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My Journey Through Autism

For the past 3 years, I have been struggling to find meaning through my children's diagnosis.  I have searched for answers and created new questions.

Through all the advice and resources I have gathered there was nothing to really answer the question why.  Vaccines, genetics, diet, supplements, cosmic destiny, I've researched all of it and nothing made me feel like I had a real answer to my children's condition or what my role as their parent should be.


So I pushed it all aside to take solace in being a resource for others.  This experience has been fulfilling and selfish as well.  Other's experiences have been a mirror for my own.  The emotions I have experienced, the fear and even the joys have helped me come to my own value system.  Which of course could change in month or a year from now.  I have never really accepted my children.  I wanted to cure them, change them,"typicalize" them, but it wasn't really for them, it was for me.  It was to improve my standard of living. Some things worked, some things were broken, some things made sense and a lot didn't. 


I pride myself on being able to take responsibility for my thoughts and actions, but admitting this simple fact has been the hardest to do.


Our lives are journeys, they won't be like anyone else's.  My experience, although very similar to many of you who read this, will still be very different from yours.  I am happy to express that acceptance.  For me it is the only way to deal with the challenges and questions, my family faces day to day.  


Summer's are traditionally hard, because it means I have to spend more time with my kids with less resources available. I know that sounds horrible, but during the summer, I really see them for who they are. Don't get me wrong, I love my children and our experience on this journey of life is very personal.  Sometimes looking at the truth of the situation can be overwhelming. I am not a banner mother, I get tired, angry and sad about the things my kids can't do. During the summer those things somehow become more evident.


During the summer, the behaviors increase, the regressions start and many times I feel more isolated and exhausted.  This summer was different. The level of services and ESY were the same, but I was different.  For the first time since the last one was diagnosed, I am not trying to find any special meaning in why my family is the way it is.  I don't really even care anymore.  These are my babies and I love them for who they are.  


The big plus, which I think made the difference for me is that I know longer care if anyone else accepts them as well.  That means if kids at the playground run in terror -- that is their problem. If adults stare at the super duper meltdowns -- its probably because they don't understand, and I don't care if they do. I just decided not to be angry anymore or to make excuses for my children's disability. 


I will always stand up for information about bio-medical and alternative treatments. Parent's need to know they have other options besides, medication and education. I will always stand up for the rights of people with disabilities to be included in society. I can't help but do that.


It is necessary for me to have balance in my interactions and participation with the overall "autism community."  I had once written that autism is my life.  That I ate, slept and breathed autism.  What kind of life is that?  Even for my children, do they want to be defined by a one dimensional label?  If they could communicate it, I think not.  It would take away from my oldest independent spirit, my middle one's curiosity and my youngest glowing empathy.  They are more than a diagnosis and finally I am more than just a mother with 3 kids with autism.

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Featured Archive Episode - Special Needs Estate Planning with Mark Albertson

If you are new to You Aut to Know! please check out RSS to download any and all of the past shows.


I chatted with attorney Mark Albertson, who specializes in special needs estate planning, elder law and guardianship.  This is always a timely issue of importance in the autism and special needs community.


Mark gave an excellent breakdown of the estate planning process from how to choose an estate planner to what guardianship really means. Although located in Washington State, Mark is very accessible online and by phone for questions. Mark also has quite a number of links to disability, autism, and estate planning resources on his website. 


Run time is about 45 minutes after my initial intro.


Catch me on the next You Aut to Know! Every Sunday at 6PM EST.


Click her for the interview with Mark Albertson.

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"Inspired By Autism" Author Claudreen Jackson, Episode Resources

Autism News

How, When Child Develops Autism May Determine Outcomes

Special issue on adults with autism

Autism Resources

Jobs4Autism.com - a resource of job success and job failure stories for individuals with autism.

Guest Resources

Claudreen Jackson - www.claudreenjackson.com
Pervis Jackson Jr. Autism Foundation - http://pjjraf.org/

I see amazing uses for this as an assistive tech for autism! Check it out.

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I may be paranoid, but not an android.....

This post was originally going to be a rant.  But after about 20 minutes of ranting I felt that I was being a little paranoid. One of my greatest fears of writing a personal blog about my life and my family was that someone would take something I wrote or said personal.  The internet can be a cruel place where its easy for people to hide behind user names and identities while passively telling someone off. I was reading someone else's blog today and I was wondering "is this person talking about me?"  Maybe he/she was, maybe not, I don't know.  I just felt a little paranoid about it all.  One of my greatest gifts is my empathy for others but the negative aspect of that is over sensitivity.  Its a daily balance, but what is life, if not for growth. So, I decided to still publish the post, because its one of the most honest things I have written.  Enjoy the paranoia!

I consider myself a nice person.  Sometimes a little too nice.  I have taken a lot crap from people who assume they know something about me and my life.  I decided a year and half ago to share my experience with autism in order to help other parents avoid the crap that has been dealt to me.  No agenda, no delusions of grandeur, no other purpose for presenting my story other than to help parents get the services they need. Mine has been the experience of misinformation.  You see, I realized early on that many individuals out here don't really give a damn about my family or my families experience.

Oddly enough for all the opinions out there, people are very touchy.  I find the autism community in general to be one of the most sensitive around.  I get it.  Its personal.  I know because I am the first one to tell someone off who dares look at my children wrong.  Oh and if I happen to be talking to people who aren't "autism aware" and they say something even remotely bigoted about the autism epidemic, you better believe I set them straight.
My number one rule in dealing with opinions is;
Recognize the real enemy - I don't criticize other parents.  I don't go there.  Its not my place. What do I look like sitting her writing or talking about other moms and dads, who the hell am I to judge someones experience? I am a card carrying member of the golden rule, I don't want it done to me I don't do it to others.  I don't criticize individuals on the spectrum - how can I claim to be some sort of proponent for inclusion and uniting the community if I can't get along with the individuals who actually have autism.  I describe what has been said to me or what I have witnessed, but I never, never assume I could ever know what is in someones heart and mind.  If they choose to share it with me so be it.  The real enemy is callousness and insensitivity.  That is who I want to fight with and do at least once a week.
Many people like to talk.  Talk talk talk talk talk.  People like to talk about themselves and their experiences and their opinions and they like to think they know something about someone else, but they don't.  These same people can't even begin to speculate as to what my family has gone through or what a typical crazy day in the life of us entails.  I get pissed off because I put myself out here in the blog world and on internet radio, because I get tired of seeing the same faces talking about autism, the same faces answering questions about autism, the same faces directing the dialog on autism.  The faces don't look like me and they certainly don't share my story.   Its not all good, its not all bad, it certainly isn't easy.  I am sorry if I have offended anyone in my quest to bring some different aspects about families and autism to the table.  Get over it.  I have.  My life will not be like anyone else's and I will continue to talk and share my personal opinions.  Maybe I'm paranoid and no one really cares what I have to say, but as a little variation on the well known saying goes, just because I am paranoid doesn't mean no ones talking about me.
For those who love the song...

How do I discipline my child with autism .... show resources

What a great and informative show!  If you missed it you must check it out, great advice and tips for any parent. Unfortunately we didn't get discipline, isolation, depression and other things I wanted to ask, but Maggie will be back again.


Focus on Foundations
Friends of Autism - grants up to $500


Autism A-Z
J - Joint Attention - the process by which one alerts another to a stimulus via nonverbal means, such as gazing or pointing. For example, one person may gaze at another person, and then point to an object, and then return their gaze back to the other person. In this case, the pointing person is "initiating joint attention" by trying to get the other to look at the object. The person who looks to the referenced object is "responding to joint attention." Joint attention is referred to a triadic skill, meaning that it involves two people and a object or event outside of the duo. It is well documented that infants display both types of joint attention at 9 months of age.  - Wikipedia


In the News
Study done on mothers of adolescents and adults with autism finds, "Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress."


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Regression Rewind, Forgetting Abilities and other Autism Oddities

Yesterday I watched the last 1/2 hour of Molly on television.  For those of you unfamiliar with this movie; it stars Elisabeth Shue as a twenty-something girl with autism. Her brother, Aaron Eckhart takes her from an institution so she can receive an experimental surgery to cure her autism.

I'm glad I only watched the last 1/2 hour because in five minutes I was already tearing up. I would have been a total wreck had I watched the whole thing.
SIDEBAR***Am I the only parent who cries at all things autistic?  I find that sometimes I can not even watch a simple news report about autism with out turning on the waterworks.***

Its an older movie (1999) so I'm going to give away the ending.  Think Awakenings - She is cured, falls in love, rekindles a relationship with her brother and is poised to start living life anew, when alas the surgery doesn't take and she returns to her autistic self.  My descriptions really does not give the movie justice, but forgive me I only saw the last 30 minutes.

Regression sucks.  Whether its an experimental surgery or in my children's case a year of school or summer vacation, when regression rears its ugly head it is completely unwelcome.  I consider it one of the unpleasant dips on the autism roller coaster.  One of my children is currently going through a regression.  I have no idea why and I am clueless as to what to do. I liken it to when you can't find your keys in your purse, you just dump everything out in order to find them.  "Is it because we've been lapse on the diet?"  "Is it the new school?"  "Maybe someone's making fun of her."  "Should I try a new supplement?" "Too much TV?" Unfortunately regression is common in autism and this is not the first time it has happened to this child.   Sometimes they come out of it and make a progression and sometimes not.  I hope its the former in her case, that maybe this is just growing pains or seasonal.

You Aut to Know! takes on the metaphysical side of Autism with upcoming guests; medium, Karen L. Garvey and intuitive Terri Jay

Forget sign language, PEC's and voice output devices; when it comes to communication, Nicole's upcoming guest use a better tool...the mind. Call in live 10/18 and 10/25 6PM EST - (347) 996-3422.

One of the hallmarks of Autism is a delay in language or no language at all. Parents continually seek hours of speech therapy, alternative communications systems and devices to give their child a voice. Some individuals with autism, never acquire the ability to speak.

On 10/18, You Aut to Know! host Nicole Flamer will interview, noted medium Karen L. Garvey of the Answer's Unlimited about how she has helped families cope and gain a global understanding of autism. After 9-11, Karen L. Garvey discovered she had a surprising “mediumship” ability. Since then, Karen has guided thousands in understanding their journey and becoming happier. Karen draws an unusual number of people who have a connection with autism (as a parent, caregiver, doctor, etc.) and as such has opened up a beneficial global understanding of autism by helping those connected to the condition through seminars, articles, and one-on-one sessions.

Understanding is beneficial, but what if you could also know what your loved one on the autism spectrum was thinking, by "other means"? Intuitive Messenger, Terri Jay is ready to facilitate that desire. On 10/25, Terri Jay will explain her unique gift of hearing non verbal communication with the You Aut to Know audience. For over 35 years Terri worked with children with disabilities. Terri eventually realized she could hear non-spoken communication. Terri uses her intuitive gift over the phone for parents of autistic children, those with a loved one in a coma, PVS, Alzheimer's, dementia, etc. Terri says, "I know there are varying degrees of being verbal so I offer this service to those whose children have very limited ability to communicate." In addition, Terri Jay also teaches people how to be more intuitive.

You Aut to Know is proud to bring both of these gifted women to you live at www.blogtalkradio.com/aut_toknow. Call in to talk-(347) 996-3422, or submit your questions through the chat feature.

About You Aut to Know!
You Aut to Know! is an interactive, live talk radio show that features Autism news, views and resources. Every Sunday at 6pm EST, host Nicole Flamer finds informative guest doing phenomenal things for the autism community and their families. Nicole also shares her unique perspective as a writer, advocate and mother of 3 children on the autism spectrum. Check out the companion blog, www.auttoknow.blogspot.com for updates on guest appearances and featured resources.

About BlogTalkRadio
BlogTalkRadio is a free, web-based platform, which allows any user with a phone and a computer to host a live, interactive Internet broadcast. Hosts call into the service by phone, managing callers on the web-based host dashboard. Shows stream live directly from the host’s BlogTalkRadio web page with archives available for all past shows. BlogTalkRadio has been featured on ABC News, The Washington Post, Portfolio, Talkers Magazine, and TheStreet.com. The citizen-broadcasting network can be found at: http://www.blogtalkradio.com

Below is a link to my press release, please share.

Press Release: You Aut to Know! takes on the metaphysical side of Autism with upcoming guest; medium, Karen L. Garvey and intuitive Terri Jay

New Rates for Autism, now 1 in 100***UPDATE No wait, its 1 in 91?

Wow, two reports with extraordinary instances of children with autism! What are the implications of these numbers on services, research, and awareness?

Click here for the PDF info sheet from the American Academy of Pedi...

A national survey of parents showed the prevalence of autism spectrum disorders (ASDs) is

approximately 1 in 91 U.S. children. The study, “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007,” was published in the

Oct. 5, 2009, issue of Pediatrics. The study drew on data from the 2007 National Survey of Children’s Health, a telephone survey of parents conducted jointly by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

*ORIGINAL POST*

I don't quite know how I feel about this yet, I'm going to have to check out the studies.  Just giving a heads up...

By Rita Rubin, USA TODAY

Two new government studies suggest autism spectrum disorders are becoming more common in children in the USA. However, researchers say, it is not clear how much of the increase is a result of more frequent and earlier diagnoses and how much is a result of a real rise in the conditions.

"The concern here is that buried in these numbers is a true increase," Tom Insel, director of the National Institute of Mental Health, said Friday at a news conference. "We're not sure how big it is."

Insel noted that President Obama wants to increase spending on autism research by the National Institutes of Health by 16% — a bigger bump than in any other area of NIH research.

One of the studies, published today in the journal Pediatrics by researchers at the Health Resources and Services Administration, found that one in every 91 children ages 3 to 17 have such a disorder, as determined by a survey of the parents of 78,000 children. That's an estimated 673,000 children, the authors write. In half the cases, parents report their children's symptoms as "mild."

Prompted by the Pediatrics study, the Centers for Disease Control and Prevention is announcing not-yet published results of a second study. It finds about one in 100 8-year-olds has an autism spectrum disorder, or ASD. In a similar 2007 study, the CDC placed the rate at one in 150. Details of the study are due this year.

The Pediatrics paper discusses several possible explanations for the apparent increase in ASD diagnoses. They include a broader definition of autism disorders and a heightened awareness of them on the part of parents and doctors.

"This is something that further research is going to have to look at," Michael Kogan, lead author of the Pediatricspaper, said in an interview. Kogan is a scientist at the Health Resources and Services Administration's Maternal and Child Health Bureau.

BY THE NUMBERS

A new government survey estimates that more U.S. children than ever have a diagnosed autism spectrum disorder. Overall, the prevalence was 110 out of every 10,000 children ages 3 to 17. But the rate varied by sex and racial or ethnic group:  Boys: 173 of 10,000 Girls: 43 of 10,000 Hispanic: 103 of 10,000 Non-Hispanic white: 125 of 10,000 Non-Hispanic black: 61 of 10,000 Non-Hispanic multiracial: 71 of 10,000 Non-Hispanic other single race:  66 of 10,000 Source: Pediatrics

Pediatrician Susan Levy, founder and director of the Regional Autism Center at Children's Hospital of Philadelphia, notes that Kogan's study is based only on what parents said about their children, not information from doctors involved in their care.

"For what it is, it's very well done, and I don't mean that critically," she said in an interview. "It is one method of getting a handle of how many people in the country have this disorder. Is it the best method? No, but it is one way of approaching it."

Surprisingly, Kogan's survey found that the parents of nearly 40% of children reported to have been diagnosed with ASD said they no longer had the disorder. Perhaps their doctor labeled them as having ASD so they could get services for developmental delay, Kogan speculated.

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