The Shit Storm Grows

Last Friday we had a very unfortunate incident involving our 9 year old son with autism.  Lucky for us he was found safe and sound.  The police officer involved was very kind, and calm and did write up a report.  Full details are in the previous blog post I had to write to save myself typing up the whole story multiple times.

Today I walked into the police department and asked for a copy of the report.  They would only give me page 1 of 4 citing that it is a sensitive type of report that they do not typically release.  Can you please tell me how/why this is and what are the magic words besides an attorney to get the full report?

What is at stake for us at this point is our childcare.  I was contacted by the au pair agency (Cultural Care Au Pair) that we have used for the past 7 years today to inform me that this has attracted the attention of the State Department and we have been suspended from the program until they complete their investigation.  In the words of the VP of Operations who contacted us the State Department said "given the fact that we have 4 children and 2 with special needs we are taking advantage of the au pair".

We would obviously like to remain a part of the program, but more importantly like to ensure that we are not being singled out nor are other parents of children with special needs.

Horrifying Day...with a Silver Lining

I have to tell the story because my heart is in my throat and just hasn't come out yet.  My pain, my rage, my devastation are all just on hold while I get through the shock and analyze how lucky we are and how to move forward constructively.

Today I got a call from my son’s therapist asking me if I talked to my au pair.  The kids had left that morning to go to the park and the library and were supposed to be meeting up with the therapist there.  It was 3:00pm and she had arrived there about 2:30.   She told me that when she arrived at the library that our au pair indicated that our 9 year old son with autism was near the pirate ship in the children's section of the library.  When she went looking for him though, he was nowhere to be found.  They had searched the library and she had gone driving looking for him.

Immediately I jumped up from my desk and called my husband and then my au pair.  No answer.  I got in the van and she called me back and indicated had my son and she was talking to someone – I told her to call me back immediately.  I drove to the library and pulled up only to see a police car parked out front.  I walked in not knowing if it was for my son or not.  It was.

Walking into the library I see my children, the au pair and the therapist standing with a police officer.  The female police officer, who calmly approached me and indicated she had statements from everyone and wanted to share with me the series of events that she would be putting into her report.

She started by telling me that around 2:30 they had a received a home invasion call from a home owner only blocks from our own home – the home owner afraid it was a grown man soon realized it was a boy on her balcony.  The police arrived and called into dispatch to see if there were any reports of missing children.  At this point there were none.  About 5-10 minutes later, they had a call from the library staff indicating that our son was missing.

The police officer returned our son to the library just before I had arrived and had begun speaking to our au pair and the therapist.  By now it was after 3:00pm.  Our son had been away from the library for what I can only estimate in distance and time, and knowing him personally, was at least was at least 40 minutes.  He crossed two very busy streets.  One of which has heavy semi-truck traffic, and train tracks.  By his own spotty accounts he at least used the crosswalks.  Either way, an angel was walking with him today.  He walked almost a full mile before arriving at a stranger’s house and simply walking in. 

The route our son walked today.  Alone.

I can’t help but run scenarios through my mind of what could have been.  What if he had been abducted, hit by a car, or startled a home owner with a gun.  All of which are tragic scenarios, none of which happened today.

As I assess the events of the day, I am thankful that I had an officer who was kind, calm and collected.  A homeowner who I’m sure was scared out of their mind and unsure of what was happening, but didn't overreact.  A therapist who had the peace of mind to call me directly.

Unfortunately I cannot say the same for our au pair, the person we entrusted our children with, not only wasn't adequately watching the children, but didn't even call.  To say we as parents are disappointed is the understatement of the century.  No matter how scared, I would have hoped this would be the first instinct.  It was not.  It makes me feel responsible as a parent.  As though we are a poor judge of character or should have known better.

It makes me sad for all au pairs it is a poor reflection on all au pairs and one that gives people the impression that horrible things will happen to their children.  I don’t want to perpetuate that, especially since we have had some wonderful experiences with au pairs over the course of the last 7 years.  Two of them have children of their own, and all of them have left an impression on our children.  Simply put, I have to express my sadness and fear and all of the emotions that go with not knowing where your child is, and single out the poor judgment of one person and one person only.

Having said that the people we entrust our children to come and go.  Whether you have au pairs, babysitters, respite workers, family members – they all play an important role in raising our children and influencing them.  As we’ve seen from many of the news stories in recent weeks, having a child and especially a child with special needs is a challenge 24 hours a day, 7 days a week and can end with tragedy without explanation or warning.  It is with this, that the realization that no matter who we entrust our children with - we as parents ultimately have to live with the consequences of any bad decisions they make.

At this very moment I still feel numb from the experience.  I know my rage, anger, tears, and a series of other emotions I can’t even contemplate are just waiting to cut loose.  For now, I am calm.

The silver lining to today’s events is that all of our children are home safe and sound, and that we've selected a new au pair that we can only hope will be a much better person for the position.  Life doesn't stop and neither do the challenges.  We have to keep moving forward.

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.

How the Grinch Stole Summer Vacation

My husband and I are proud to call ourselves citizens of Camarillo. It is a great community in which to raise a family and enjoy living in Southern California without the hustle and bustle of LA and the crime, problems, and among other issues. We’ve lived here for 6 years, in the same house in the same neighborhood. Children ride bikes, play outside with their friends, use sidewalk chalk, all of the fun stuff we did when we were kids. We’ve loved it here, almost all of our neighbors have children – at one point there were 23 children within the 10 houses on our block alone. We have watched our neighbors kids grow and our own. They make friends that they go to the same school with in most cases and you can’t hope for much more in the way of a great environment for your kids.

Unfortunately, we have an HOA which has become increasingly focused on the so called safety of these activities. First it was a letter, and now yesterday in the mail a postcard proposing actual changes to the Rules and Regulations notifying us as home owners we are welcome to attend and discuss. Who knew chalk drawing and loitering could be used in the same sentence?

Our children draw in our driveway all of the time with chalk, it is one of their favorite things to do, they want to ride their bikes, have fun, and are never unattended while they are outside. These are basic reminiscent activities of summers gone by for anyone, and anyone trying to establish rules in the name of safety is missing the point of looking out for their neighbors and what has made this a great neighborhood to begin with.

Our society has lost sight of looking out for the welfare and development of all children and the bigger picture. Restricting activities that can build relationships, and foster a sense of community for everyone’s benefit is detrimental to everyone, not just members of the HOA. We will not be attending the HOA meeting because we have 4 children who a more deserving of the time and attention than this non-issue. Any true issues of vandalism, loitering, and the like are due to much bigger issues than our children playing in the streets.

Adventures in Sportsmanship and AYSO

As a parent of 4 children, two with special needs, it has been a challenge to be a successful soccer family. Luckily we have been met with a great support system here over the past 4 years in AYSO Region 68 since both of our boys have played on the VIP team for kids with special needs under the tireless direction of great coaches.

This year, we cautiously decided it was time and after consulting with our oldest son who was turning 10 we opted to put him on a regular U10 team here in AYSO Region 68. I have to admit we were scared, worried he wouldn’t fit in with the other boys, or play well enough – but after watching a practice and the first game I came to realize the importance of his place on the team. It wasn’t to be the best player; it was to teach his teammates what it means to pick up the slack for a weaker team member.

Our son got everything out of this season AYSO “Region 68 enthusiastically supports” from its website –

• Registration was open to him
• He played every game, was on time and enthusiastic
• He was on a balanced team, and had many talented and supportive teammates
• He received positive coaching
• He developed skills he did not have prior to playing this season

The parents and kids on the team were highly supportive, although I don’t know that all of them knew of my son’s official diagnosis of autism – all were supportive of him none the less. The most important point of all - my son enjoyed himself, and being part of the team.

His team did well, so well in fact despite my son’s deficits and skills on the field went undefeated until the championship game and were even invited to the Regional playoffs. It was at this point we saw our only unfortunate behavior – when his assistant coach suggested he be ‘late’ or ‘sick’ so his team members would have a better chance of winning.

As Muhammed Ali said – “The will must be stronger than the skill.”

Thanks to all in our community that truly believe in character above shelves of trophies.