AB & C - Autism, Black boys & CDC Whistleblower

Due to the media black out (no pun intended) on this issue many of you may not have heard the story of CDC whistleblower who claims that the CDC covered up link between the MMR vaccine and a 340% increased risk of autism in black boys. For a more indepth explaination of the cover up - go here.

I don't want to simply reiterate the story, I want to go a little deeper into some of the connected issues this story reveals

A is for Autism
Traditionally, Autism has been presented as a wealthy white disorder. The images presented by the media always show well educated, wealthy people and families living with autism. Many families in the autism community know differently that affects children of races and hues, but this image has always been prominent. It infuriates me to find out that the CDC manipulated data to remove black boys being affected at a rate of almost 400%. Yes this is damaging to the children of all, but it also left black families to ignorant to the effects that the MMR vaccine posed to their children.  The total disregard of a whole segment of the population shows that the CDC is a dangerous and evil organization that we can no longer let propogate lies any longer. There must be an accounting for this omission, and unfortunately I know this is just the tip of the iceberg.

B is for Black boys

Why black boys? What does this say about any and all the studies the CDC has presented to black americans about our health? Isn't everything up for debate now?

Autism Awareness Month 2014

Do you do anything special during Autism Awareness Month? I used to wear my pin everyday for the month of April to work to illicit conversation, but since I am not working right now I am not eliciting many conversations with anyone over the age of 1.

I used to try to go to seminars or conferences, but getting away has become increasingly difficult to get away.

You love someone with Autism, but are they happy?

"I love someone with autism." 

Actually, I love three people with autism. I used to attach a pin to my everyday bag that said that, accompanied by a puzzle piece ribbon. 

Lately I have been focusing on my children's happiness.  I have been observing them to gauge whether or not I am doing a good job facilitating enough opportunities for them to discover what makes them happy in this world.

A Year in the House

I have come to terms with the fact that it may be a year before I can leave the house. I know, I know, I'm not a first time parent, in fact, I've been around this block before, but with twins its a little different. Not to mention, with the older kids its always been a struggle to go out and I have to admit that during this last month, I have not been out with all five, at all.  And I don't intend to for about a year. In order to accommodate this, I have expanded my internet shopping for basic essentials as well as trying to plan my trips for the 5 hours of older child freedom I have during the day.  Taking the twins out has its own challenges; for example - how the heck am I supposed to shop with my stroller? I can't feasibly put two baby car seats in a shopping cart and actually buy food for a family of 6. So I haven't figured that one out yet. I feel like I am neglecting the older kids and I make them be quiet while the babies are sleeping which is most of the time. My former youngest, now middle child won't touch the twins with a 10 foot pole and she is seeking attention and telling me "no" all the time.

We are all going through transitions, yet I still have to be diligent and proactive with the special ed advocacy or things will fall through the cracks.  I have already noticed a few missing things already. Don't get me wrong, my kids teachers have been great, they all know that I just had twins and they have been very lenient with me when it comes to returning forms and homework, but as many of you who have a child with an IEP, its only worth as much as it is implemented and enforced.

I have to say I am in a weird place right now. There is a strange peace I have at having infants at 36. I don't feel rushed, I am taking it all it in enjoying my time with young kids since it will be the last time. I am also terrified out of my mind at the same time. I function on interrupted sleep if at all and I struggle to find time to clean my house and write. I know that the first 3 months are the most demanding and it won't always be this hard, but I also recognize that with kids its never what you expect, either.

One highlight is that my creative juices are flowing. I am re-focusing the autism non profit and creating an exciting concept that can be implemented nationally.

Autistic and Alone

Over the years I have become hesitant to tell people that I have 3 kids on the autism spectrum. Yeah I know, I have a blog about it, co-founded a non profit about it and frankly my kids are not keeping it a secret as well as I would like them to(that last one is a joke).

My hesitation is due to the reactions I have received over the last 5 years since my youngest was diagnosed; the reactions range from pity to rudeness. As parents we have all had those why me moments and during one such moment I realized that I actually am glad that I have more than one child on the spectrum. Crazy? Not really. You see no matter what happens, they will always have each other.  In school and society they struggle with academics and social skills, and basic acceptance. At home my kids with autism are not different. They play together, tease one another, and accept one another. It would be nice if my son had 

In My House

In my house, no one is strange. Nothing gets a weird eye and no one

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

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

Why personal revolution is a forward and back process

I am a self proclaimed know it all.  I love to be right and I love to have the right answer.  Lately I have been feeling wrong and I can't stand that.  I think its a security blanket(of which I have managed to hold on to the physical representation of said blanket for 33 years!)  In  my life there is a lot of uncertainty, a lot of unanswered questions.  The realization of this spans the spectrum from extreme exhilaration to terrifying fear.



Join the You Aut to Know Mailing List

This weeks featured archive episode - Sensory Designing for Autism

How much do you pay attention to the design of a space when it comes to your loved one with autism?  Did you know that things like cracks in the wall, stains on a carpet and certain colors can trigger a sensory meltdown?  Last year I talked with interior designer Carolyn Federer on what to consider when you design a room, for a person with sensory issues.  In this interview Carolyn shares her unique perspective on space and designing space as well as some tips for parents and educators on how they can make their spaces more sensory inviting.

Click on the title above to access the interview and make sure to join me this Sunday at 6PM EST when I interview Defeat Autism Now(DAN) practioner, Dr. Cathie Lippman only on You Aut to Know!
 Join the You Aut to Know Mailing List

Stayin' Alive, Stayin' Alive...ha ha ha ha....Stayin' Alive, Stayin' Alive - its on autoplay, be sure to hit pause to stop....

This is mantra for the next couple of weeks.  I find myself very busy and slightly overwhelmed by it all.  Its all good, better to be too busy than too bored.  I feel my schedule swings from extremes,  For example February and March, you could find me with loads of free time on my hands(as free as any mom can be with 3 kids, that is).  There was even a lull in the kids schedules, requiring me to attend no meetings and very few illness pick ups or appointments.  Then all of a sudden, like a whirlwind, I am called into action.  Now I am trying to schedule 10 events in time slots for five.  Is

THE BEE GEES "Stayin' Alive"

Join the You Aut to Know Mailing List

What happens when you are not around?

We have all had this thought.  What happens to our kids when we can't be around.  I don't mean temporarily unavailable, I mean dead, hospital bound, incapacitated.

Yesterday I fell outside of my house, a very unexpected extremely painful fall.  Luckily I did not break anything, but I did seriously sprain both my ankles. While I was waiting for someone to help me, I thought about how many activities and plains may need to be altered because I would not be able to get around. I thought about how my life is interwoven with so many other peoples lives and how my injuries would alter that.  It became very clear how important my care giving is to my children.  I have support from my parents and my husband occasionally, but for the most part, I'm it. This is not unlike many mothers.  Mother's are the traditional cargivers of children.  When your child has a special need that caregiver role mutates into case manager, care coordinator or some derivation of that role. As typical children grown older the parents role decreases, leaving many  parents as outsiders to their children's/adolescents lives. In many ways, that will not be my experience.
Its weird.  As I try to evolve into a better parent, I am gaining a better understanding of the role I play in my children's lives versus the story I tell about the role I play.  The perception versus the reality.  Yes sometimes, I do want you to identify with me, and sometimes I want your pity, and sometimes I want you to stare, and sometimes I want you to leave me alone.  I can admit that I get bitter about this whole experience, at times.  It is a balance.
So wht

Join the You Aut to Know Mailing List

New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible

Join the You Aut to Know Mailing List

http://www.djfiddlefoundation.org/grant_apply.cfm

http://psychcentral.com/news/2009/10/30/behavioral-therapy-for-anxiety-with-autism/9239.html




Join the You Aut to Know Mailing List

You Aut to Know! Update and Resources, 11/1 Episode

Interviewing Jack E. George was insightful!
Focus on Foundation
HEAl