Because I cannot imagine the terrible pain of the families of the school shootings, and as the parent of both a kinder gardener and two boys with Autism this hits home in so many ways.  In the short term - no child should ever fear school, no parent should ever fear sending their child to school.

In the long term I fear this has greater ramifications for the special needs community and my own special needs children if new reports and media outlets do not do their part to use this unspeakable tragedy as a teachable moment.

Below is the statement from the Autistic Self Advocacy Network (ASAN) on this very topic: 

ASAN Statement on Media Reports Regarding Newtown, CT Shooting

December 14, 2012

In response to recent media reports that the perpetrator of today’s shooting in Newton, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:

“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newton, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.

Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.

http://bit.ly/QYZlwq 

Workplace Disbelief

It would seem that I cease to be surprised these days but it is never ending.  Just when you think you have it all figured out you face challenges from an unexpected angle that blindsides you.

For me this time it was all about work.  I've fought very admittedly about issues of agencies telling us that we must be present for all therapies and in defense of other families as well.  No one should feel like they must give up their livelihood or financial well being because they have a child with disabilities.

In all my professional life, I've worked for supportive and understanding organizations.  My children have never been an excuse for not showing up, doing my job or doing the best I knew how.  The last 3 years has been spent in the realm of Human Resources (HR), and working with these teams very closely.  To say it has been eye opening would be an understatement - but a learning experience nonetheless.

I came into my most recent job with high hopes and expectations and with some concessions as a family that there would be more demands, and travel, but more flexibility and time working from home as well.  The past 18 months has gone well, or so I had thought until last week when I was approached my my HR representative about my excessive PTO and Performance.  Earlier this year our firm implemented an "Unlimited PTO" policy, which sounded great.  

As I discussed the concerns with both my HR rep and Manager, the issues at hand and the time off were addressed, and I attempted to explain at some level these partial days off that were directly related to IEP meetings, therapy meetings, doctors appointments, and the like I was flatly met with the response of:

"We all have our cross to bear.  I'm sure you don't have any more responsibilities that Sally* does".

*Name changed - another parent of 2 typical children

Upon hearing this I froze.  I've openly shared within the firm from the moment I interviewed that I have 4 children, 2 of which have special needs.  Our own CEO and his wife have a child with autism, and yet I was hearing that there was nothing that made me any different from anyone else who was a parent or an employee.

This has been devastating to me as well as eye opening.  I had a false belief that there was some level of understanding of the demands of this part of my life.  Everyday is an uphill battle to ensure scheduling of therapy, services, payments and progress in our children and our family.  Not to mention the long term emotional and psychological demands of having children with special needs and the elevated levels of stress that we as parents harbor.  

As for my personal situation - I choose to work - I like to work.  The reason I sought a masters degree was not so I could sit home, but to have a career.  Just like I don't want to be judged for working by agencies that feel I should be home with my child, I do not want to judged or made to feel guilty for the time necessary to take care of my children.  This scenario has only added to my stress levels and has led to the realization that so many parents in this situation still sadly face.  I know that we as a family are not alone in this battle, and many families face these challenges everyday - but still so much must be done to create awareness.

ADA protects us as parents as well.  Read more at Wright's Law.  

Autism Services - You're in the Drivers Seat

It is easy when you first get services to be overwhelmed as a parent. You just know you need services, your child needs services - you'll take anything you can get.

As for the reasons why there are three basic reasons:

1. Seek out providers who's values match up to your own
2. Ensure that there is an established communication with the entire team
3. Be sure you are key resource on scheduling and prioritizing the therapy
4. Set ground rules for expectations of your children and your household

There is a potential to have many people in and out of your home in the name of progress and therapy. Be sure you know everyone's role, how frequently you may expect to see them, and regularly scheduled times.

Decide how you feel about the assignments of interventionists and how they will be introduced to you and your child. Don't be afraid to speak up about whether you prefer a trial period, and even when you don't think a particular interventionist might not be a right fit. Ensuring that the right people are working with you and your child is a critical step.

There are many choices in therapy teams, and they are not one size fits all. Whether you are paying for the services yourself directly, doesn't mean you shouldn't make sure you get the best possible service. After-all, you and your family must live with the results for years to come - be a good consumer.