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.

Career Advice

Our HR group was asked recently to support a local high school program and talk to a class about what it is like to be in the workforce and what skills they will need to be successful. I couldn’t help myself I had to sign up. If it wasn’t for a program like this one, I likely wouldn’t have the skills that I do today.

In my mind, my experience has been an exceptional one. The speakers came from a locally owned oil and gas company and after a few sessions with my class I got up the courage to ask if the company could donate money to my bid to attend Close Up – a program for high school students to visit Washington DC. The response was not to offer me money, but the opportunity to work 20 hours for a $100 donation. The cost of the trip was $1,100 so this was a drop in the bucket, but I went with it. The deal was to see what I could do and I knew it, it was clear to me that if I could prove myself in the first 20 hours I could maybe get a more permanent job out of it. I filed, I learned to download data into spreadsheets. This was my first experience with a PC since all we had in the schools were Mac’s. It was a great lesson in learning to work with people and do a variety of jobs. I became a part time employee and worked over holiday breaks and when I would return from college in the summer. This computer experience gave me an advantage when I began college and all throughout. I had the practical experience and real world examples as a result to apply in my courses. I ended up working for the company seasonally for 5 years doing everything from filing, computer work, answering phones, sorting mail, you name it.

When I was in my senior year of college I began tutoring for the athletic department, on many topics but primarily math. This was ironic to those around me since I always struggled with math, but I went with it and began to get better and better at the concepts as I myself was the one explaining them. It was this position in addition to my college degree that gave me the opportunity to begin teaching computers at a small adult school while working on my master’s degree. I started out teaching Word, Excel, PowerPoint, and Access and began prepping my students for the Microsoft Certification Exams. Unsure why they were coming back without good scores when I knew they had the concepts I began taking the exams myself and I began to learn how to take the exams and in turn teach to them. There is strategy involved after all in outsmarting a computer program regardless whether it is in the format of a video game or a test. Once I had taken all of the exams I discovered that you could become a master certified instructor by passing all exams and teaching for two years, and so I got my certification in Office 2000 while teaching.

A few years later when we moved to California I had begun looking for work and leaned on what I knew best which was teaching. In the fall of 2004 I began teaching for CSUCI part time as an instructor teaching Comp 101 – Introduction to computers. There is nothing like repetition to ensure you know what you are talking about. Teaching 4 sections of the same course meant I would teach on the same topic 4 times a day, nothing is more mind-numbing than that – but at the same time I came to realize it helped to really solidify what I knew and my confidence in presenting it to other people. Upon getting hired as an Engineering Administrator for my current company I began to scale back my teaching and eventually took a break from teaching. It has only been in the last two years that I have returned to teaching part time and currently teach an online course for upper division non-computer science department on the Survey of Online gaming.

My experience in improved greatly as I began working at Meggitt, my first big corporate job. I learned what the engineering group did, supported them, booked travel, developed reports, and took it all in. I took an administrative position with a Masters degree not because it was as good as I thought I could do, but because it was in an area of interest to me and my way of getting my foot in the door. Clearly I have not chosen to work for the perfect company, but no doubt one that has given me plenty of opportunities to grow an learn. I have had opportunities to learn the business and implement systems where previously there had been paper. I continue to do this type of work at a corporate level, and change management remains one of the biggest challenges.

My career is not an expansive one, but it has taught me to push the boundaries, do more than was asked, and never say something wasn’t my job. I have looked at every new job as an opportunity to gain a skill or insight that I would save for future reference. I am highly appreciative of the confidence and opportunities that those around me have had which have enabled me to grow and develop as an individual. In any job you have your expectation of the experience will ultimately shape your performance and your future. Hopefullly I can convey that to the high school student I once was.

A High Stakes Halloween Casino Night Fundraiser

Ventura County Non-Profit Presents

A High Stakes Halloween

Fundraiser to Support Children with Special Needs

September 18, 2009 (Thousand Oaks, CA)-- PAUSE4kids, a non-profit organization based in Ventura County will proudly host A High Stakes Halloween October 10, 2009 at Wood Ranch Country Club from 6:00pm to midnight. All proceeds from the event will be used to financially aid the needs of local children with disabilities.

This High Stakes Halloween is a celebration of Las Vegas’ hey-day, The 1960’s! At this haunted 1960’s casino party guests will enjoy casino games, live music, costumes, and a silent auction. Guests will be able to bid on everything from a weekend stay in a Malibu beach house to cooking classes.

“PAUSE4kids provides parent training, support groups and grant funding and for services for special needs children with the proceeds of our fundraising activities,” Susan Baukus, Vice President of PAUSE4kids said.

With current educational cut-backs and a down economy, PAUSE4kids works to provide financial assistance to children with special needs and their families by helping to provide whatever is needed that is not readily available.

Tickets are $60 for an individual or $100 per couple and include dinner, hors d’oeuvres, a drink ticket and $200 in casino chips. Tickets and additional gaming chips are available online now at www.pause4kids.org.

Sponsors for the evening include Amgen, Meggitt, STAR Autism, Wachbrit Braverman PC, Kiwanis, Newman Aaronson and Vanaman, Advanced Property Maintenance, M3 Civil Engineering, Sweet Impressions, Companion Connection, California Psych Care, and WorkSite Health Inc. Honorary sponsors for the evening include the Batarsa Family & Far East Flowers, Ventura County Autism Society, and Channel Islands Social Services.

About PAUSE4kids

PAUSE4kids is a non-profit, 501(c) 3, organization founded and governed by concerned parents of special needs children. The organization provides resources and information to "fill the gaps" by providing advocacy, education, support and scholarships for the special needs children in Ventura and Los Angeles Counties. www.PAUSE4kids.org

Shots In the Dark - A Film by Lina B. Moreco

Shots in the Dark, is a documentary produced by the National Film Board of Canada. The delicate subject of vaccinations is a very political and emotional issue. It is your right as a parent to have informed consent. Please watch the movie and visit the film's website to find out:

• How To Get Vaccinated
• How to Choose
• Relavent Websites

Links to the documentary in 9 parts on YouTube is below:

Shots in the Dark Part 1

Shots in the Dark Part 2

Shots in the Dark Part 3

Shots in the Dark Part 4

Shots in the Dark Part 5

Shots in the Dark Part 6

Shots in the Dark Part 7

Shots in the Dark Part 8

Shots in the Dark Part 9

Educate yourself, advocate for your child, make informed decisions.

~Spectrummom

Our Story of Autism

It occurred to me after being invited to be the parent at an upcoming Autism Panel where I would have to share our story that I had never actually blogged about it. I've told the story what seems like a thousand times to various people. So, here it goes, this is our story of autism:

We have two beautiful sons born in August of 2001 and November of 2003. Our family moved to Southern California in February of 2004 so that my husband could take a job at NAVSEA working at the Port Hueneme Naval Base. Jonah was 2 years and AJ 2 months old. The first 6 months that we lived here, my husband traveled for 3 of them. I tried to acclimate to the new environment, new neighbors, get out and meet new people. I tried mom’s groups, play dates, you name it. We went to the beach; after all we lived there what a great life right? It was all such a struggle. By July I had told my husband and myself that it was time for me to go back to work. I was convinced I wasn’t cut out to be a stay at home mom. I just didn’t fit in with the other moms. My kids didn’t play like the other kids, and I thought it was just me.

By the Fall of 2004 I had gotten a job and the boys were going to preschool and daycare about 20 hours a week. Jonah attended First Presbyterian preschool in Oxnard for about 4 months when the preschool suggested we have Jonah evaluated by the schools. Sure what could possibly be wrong with our first born? He’s talking, he’s walking, and he’s a sweet loving little boy. So we set an appointment with the school psychologist in our home school district to have him evaluated. Have both just started jobs, we decided to tag team these meetings, our biggest rookie mistake.

So, since he was closer my husband attended the meeting with the psychologist and I dialed in for a conference call. She asked us questions and towards the end light-heartedly added that “Dad is an engineer and mom is into Computers, he’ll be fine”. At the time that was a comment that at the time we didn’t understand the humor or the value of. At the end of the call she told us she would also evaluate Jonah and write up her report and be in touch. A few weeks later we were invited to a meeting to review the findings from the psychologist. The preschool teacher, school psychologist, speech therapist, and many others were in attendance. This time it was my turn to show up to the meeting, so Joe went to work as usual that day. It was our first IEP – and we didn’t even know what an IEP was. Sure they covered the formalities of sending us forms and setting the dates and times. However, I had no idea what I was walking into. I was told that day by the school district that my son had autism and that we should consider getting in touch with the Regional Center as their diagnosis and the supports they could provide would be different. Until that day in early 2005 we had no idea that the Regional Centers existed, that our child had developmental delays or that our lives would forever be changed.

We worked through the spring and summer of 2005 to find placement for Jonah and we moved to Camarillo where he began attending the preschool program half days and attending day care. We also worked to get Jonah evaluated by the Regional Center –which also gave us a diagnosis of autism. We were setup with Respite and Daycare funding and no other real therapy. The denial in us told us the preschool was enough. After all, Jonah could walk, talk, and was a sweet boy.

Over the summer the boys had completed their time in Oxnard at the preschool and just as we began to breathe a sigh of relief that Jonah was finally taken care of and we could get on with our lives – we realized something was wrong with AJ. Between 12 and 15 months his vocabulary was developing and increasing. He was saying things like cup, drink, eat, square, circle, triangle, and rectangle. Between the ages of 15 and 18 months AJ began to lose words. By 18 months, everything was a rectangle – we joked that it was his battle cry. By 24 months he had stopped talking almost completely and no longer even said rectangle. Luckily we knew the drill, but it didn’t make it any easier. I realized that for myself I had been willing to accept the diagnosis of my second son, but only on my own terms, and when I received it via email rather than in a face to face meeting with the Regional Center psychologist I was devastated. It was the first and only time I cried about autism at work.

Over the course of the next 6-8 months my husband and I went through alternating stages of acceptance and mourning. Still plodding along with IEP’s, preschool schedules, parent training, and whatever we could get our hands on and muster the strength to try. AJ began receiving an Integrated Behavior Intervention (IBI) program, and upon turning 3 years old also began attending the school district’s early intervention program. He has since moved on to an Applied Behavioral Analysis (ABA) approach. It became difficult to prioritize the two as AJ’s case seemed so much more severe that Jonah was put on the back burner. How do you prioritize the needs of two children with special needs? There is no easy answer we still struggle with it to this day.

In the 4 years since receiving the diagnosis for both of our boys we have had the opportunity to learn from many wonderful people, teachers, therapists, parents and others. We have learned to acknowledge that we as parents are in control of our children’s future and we must guide them to the right resources and have the dreams and goals for what their future looks like. It may not be the same dreams and goals that we had for them when we first held them as infants, but having a child with special needs changes you and the person that you once were.

We have continued to do interventions with our boys above and beyond what the schools or the regional centers, or even our pediatricians have been able to provide or recommend. When we haven’t received the level of openness and support from these providers we have moved on to those who were willing to listen and let us be heard. Among these interventions have been Gluten Free/Casein Free diet, Blair Chiropractic, and also other bio-medical interventions in the form of supplements with the help of a DAN Doctor. We would never tell other parents these things will definitively work on their children. The most important point to be made is that no one knows your child better than you know your child. You must find the resources to educate yourself and advocate for your child.

Our family has progressed tremendously and our boys are both of our boys attended early intervention preschool and a Special Day Class Kindergarten, they are both fully included in 2^nd grade and Kindergarten respectively at our home school. Every day is a struggle and a challenge, but it is also a blessing and a gift. In addition to the boys we have a two year old daughter who is typical and are expecting a 4^th child in 2010. Our struggles are not over, they are ongoing and life-long. What makes the experience easier is knowing we have experience to share that enable to help other parents and allow them to struggle less based upon our trials and tribulations, and to give a big thanks to those parents who have gone before us to make our lives easier, helped to blaze a trail and who have been willing and able to mentor and teach us as well.

Blindsided by Ignorance

So we just recently found out that we are expecting one more child – this will be #4. Never thought I would have 4 kids, but it that is what is what we are getting we should be so lucky to have a family of 6. What I wasn’t prepared for was how judgmental some people e can be. Working with a new group of people when I announced it at a business dinner one of the ladies excitedly asked me if it was my first. When I answered “No, 4th” she quietly said “Oh”. On our long weekend I decided it was time to get the boys out of the house and down to the pool. I happened to sit down with one of our neighbors and her husband to talk while the boys played. As we talked about what it will mean to have a 4th child – this woman says to me. “You know you are going to have to get rid of your dogs. You are going to have 4 kids and two have SPECIAL NEEDS.”

I was dumbfounded. Understanding that there is a story behind the dogs, we have two 10 year old boxers that were our babies before we had babies. At first I thought it was the dog comment that bothered me. I love my dogs, I may have to pay someone to walk them but they have always been there for us. It is hard to think about what it will be like when they are gone. I definitely have times that I think life would be easier without them but that isn’t what we signed up for when we got them.

Later that night I woke up and realized what really got to me about this statement – so bluntly telling me that two of my children have special needs. No, really? I completely missed the past 5 years of my life and being told that one, no wait both of my boys have autism. Going through classes, learning to navigate the Regional Center, how to have a successful IEP and get proper placement for my children. What was I thinking going to support groups, leading support groups, becoming a Board Member for PAUSE4kids, encouraging my husband to become a VCAS member? What were we thinking in being supportive of other parents and helping them to learn their options more quickly than we did all while working 2 and at some times 3 jobs. I can’t believe that it never occurred to me that I was just too busy to look up and think of all of these things – you mean to tell me my kids are different? Wow - I'm shocked.

How can you tell me how beautiful my daughter is and completely ignore my boys? The most painful part of this is the realization that people don’t see how beautiful and special these boys are. They are smart and intelligent and we have worked hard and blazed a trail that has been hard fought (with many more battles ahead) to get them where they are. Doesn’t she realize this could be her child and her battle?

Sadly, as painful as that one statement has been for me, it makes me realize people don’t understand what our lives are like, they may think they do, but they have no idea. I have learned to be very compartmentalized in my emotions. I have to be. There is work to be done, systems to design and setup, children to feed, classes to teach, a family to love. These are the people I stay involved in to educate and create awareness for. It isn’t for the parents or the special needs population – we already know all too well the reality of the situation.

Remove, Replenish, Repair, Restore

Remove, Replenish, Repair, Restore - this is the mantra modestly scribbled on the white board at the DAN! doctors office on our second visit to see him about the boys.  It has been a month and a half since we first took them in and we've done our best to keep up with the regimen of Vitamin C, Vitamin A, liquid vitamins, probiotics, fish oil, Calcium, DMG, Q10, and oh yeah, they have to be fed too.

When we first started I thought to myself, no problem they'll just take their vitamins and it won't be a big deal.  The first night I gave each one their probiotics to take with their milk.  I guess I take for granted that I know how to choke down a pill like it is second nature.  AJ took it like a wild man chewing his gel-cap up like it was steel.  Jonah's 20 minute ordeal of spitting up water and seeing the contents of his pill everywhere and not getting it anywhere in his body made me reconsider how to administer.  Opening the capsule and dumping it into a smoothie it is.  That is how lemon/berry/fish oil smoothies were born!

So, we've been doing all this since March and we took a morning off sometime in April so that Joe and I could take the boys to get their blood drawn for the Age food sensitivity screening and Hard Metals screening tests that I had purchased from my doctor in Westlake almost two years ago.  As you can see, the thought of getting blood taken was a deterrent for us.  AJ went first and was a trooper, Jonah, on the other hand was a little more resistant.  Let's face it, he screamed his head off.  Crying it hurts!  It hurts!  Take it out!  Take it out!  It got so bad that I had to take AJ outside and we could still hear him.  Of course this threw AJ into a spiral as well so here we were with two screaming kids, but the blood got collected and all was right with the world once more.

So, this past week we finally met with the doctor to get the blood results.  As we have always known, our boys are polar opposites.  Jonah's little body still seems to have absorption issues. His vitamin levels were very low, but on the bright side, so were his levels of hard metals including arsenic, lead, and mercury among others. 

Jonah's test results:

AJ on the other hand, has great vitamin levels, with one exception.  The downside being he is harboring very high levels of heavy metals.  So, after discussions with the doctor, we will likely start thinking about chelation treatments for him here in the next couple of months. 

AJ's test results:

So, we left the doctor's office with a whole new round of supplements, the next step in the probiotics, new and additional vitamins, and of course B12 shots that the boys must do twice per week.  We agreed to a division of duties, Joe will do the injections; I get to do the stool samples for their next round of tests.  I can't wait.  I'm sure to have a blog post about that.  

Did I mention you'll do anything for your children?

Autism Parents - We Are Not All Sheep

Okay, so the blogging thing is time consuming and I haven't been the avid blogger that some of my friends have been.  Did I mention I have three jobs?  Well, when I do find time to read something that doesn't involve work still has to be done at lunch, sitting at my desk.  Suddenly I am seeing the correlation between my lack of activity and schedule. 

When I do actually get a chance to do a little reading and review what's being "twittered" about I often follow links to various articles and message boards.  I happened to follow one of these links from twitter to a website for Gawker who happened to be ranting that day about Oprah and Jenny McCarthy.  

As many of you know, people either love her or hate her, and in the autism and vaccine communities it is especially amplified.  Since vaccinations are such a hot topic this day in particular the responses to the post were especially pointed.  Sadly as with many message board posts there were very few thoughtful posts.  Two which were particularly disturbing to me:

“Jenny McCarthy is the main example of a group of people called "Science-tits". They use the fact they have mammories to spout off the craziest/dumbest things in the world, and people believe them. What are Jenny's credentials? Her main claim is she has "Mommy Sense", which is how she diagnosed her child as Autistic, and also how she cured one of her children of it.”

“I feel really bad for these parents. Their need to find a cause for their children’s' condition plus one bogus study in a very prominent medical journal that was later debunked and retracted by the medical journal has led them down a dead end path.”

Clearly these people cannot understand the magnitude emotionally or psychologically of what a parent must go through not just in the initial stages of learning about their child's diagnosis, much less what it means to live with it and deal with these behaviors, setbacks, and the reality of what a diagnosis of autism means.  For some of us, there is a glimmer of hope that our children can and will become functional members of society and that their hopes and dreams can be fulfilled.  The trials, tribulations, and hopefully triumphs that we as parents and those of our children are what change us and make us who we are regardless of whether and intervention we try with our children is successful.

Yes, inherently, just as any parent would do, we are willing to do ANYTHING it takes to ensure the quality of life for our children and our family is the best it can be.  When I say anything I really mean anything.  My kids have Berry/Lemon/Fish oil/Probiotic smoothies before bed just about every night and they still love me.

However, for people to dismiss us as sheep who will buy anything that anyone is selling out of desperation does not truly know a parent of autism.  I would never blanketly praise Jenny McCarthy, (or any one person for that matter), because it is simply not that straight forward. 

What works for one child with autism does not work for another.  We are lucky enough to have not one but two beautiful sons with autism, and they are about as polar opposites in their abilities and responsiveness to the therapies we have exposed them to as anyone can be.  But we are not some pathetic population who is blindly looking for anything to make our children normal.  I don't want my children to be normal, I want them to be happy, successful, and themselves. 

Parents of children with autism are a diverse group.  We are educators, lawyers, engineers, entepenurs, and even stay at home moms.  We think for ourselves, we continue to educate ourselves and we listen to our children and each other.  The bottom line is no one has the answers for our children least of all us.  We must seek out the information that best suits our situation at the time given the current knowledge and available therapies.  

Uninformed and pitiful generalizations and pity for our situation are not necessary.  Don't feel sorry for our situation, or judge our choices, keep an open mind and be willing to learn from it.  

My First Twitter Party!

So I've been Twittering for the past month and a half or so.  What is Twitter you ask?  It is social networking - microblogging if you will.  You update your status periodically and develop a following, while in turn following other interesting people.  

I keep it on my iGoogle page, on my blackberry, and of course you can go straight to Twitter.com.  Twitter allows you to capture those random thoughts that you would normally internalize for fear of saying something out loud at an inappropriate time.  One could almost say that it is an outlet for the random observations, frustrating moments, and amusing events that happen throughout the day - 140 characters at a time.  At least that's the outlet I use it for.  

In the process of updating reading updates, and looking for new and interesting people to follow, I've discovered an incredible community of Gluten Free/Casein Free twitterers. Some have Celiac, some are chefs, service providers, and still others parents like myself just trying to learn more and more about what to feed my kids and eliminate as many issues as possible.  

So last Friday night one of the new Twitterers that I follow Bonnie Sayers organized this great Gluten Free Twitter Party.  Okay, you barely learned about twitter was, and now there are throwing parties.  It's really not as complicated as it sounds.  Think of Twitter as being in a chat room with many people and posting randomly.  A Twitter party then becomes a chat room of people all on the same topic.  The party started about 7:30 - and no it's not like back in college by any stretch of the imagination - sadly, those days are over.  Instead it was spent in front of the computer on a Friday night with the children running around screaming.  There were times where it got to a point where the conversations were so quickly being updated and the twitterers typing so feaverishly that one could only read every other post.  Hardly the same, but it was still great!

Knowing that many people I know still look at me funny when I talk about Twitter, I figured it was a great way to pass on some of the knowledge that I gleaned from participating in the intense knowledge transfer of people from all across the country on "the diet".  It was fantastic to realize there are so many people out there battling the same daily issues of what to make, how to make it and where to get it.  With any luck, I've also sparked some interest in my new favorite obsession - Twitter itself.  

So, as promised here are some of the many resources I gathered from the infamous "Gluten Free Twitter Party":

Great Blogs

Celiac Snack

http://www.celiacsnack.com/

Karina's Kitchen- Recipes from a Gluten-Free Kitchen

http://glutenfreegoddess.blogspot.com

Mom Cooks Gluten Free 

http://momcooksglutenfree.blogspot.com

Switch 2 Gluten Free

http://switch2glutenfree.com

The Bon Bon Gazette 

http://www.bonbongazette.com

Great Resources

Dairy Subustitutions

http://gfcfexperience.blogspot.com/2008/11/casein-free-substitutions.html

Flour Chart

http://benevolentkitchen.blogspot.com/2009/03/comparison-of-flours.html

Grandmas Gluten Free Baking and Cooking

http://grandmasgfbakingncooking.ning.com/

Gluten Free Meal Planner

http://www.mealmixer.com/gluten-free-meal-planner/default.aspx

World Autism Day Events at the UN

This Thursday, April 2nd, the United Nations is recognizing World Autism Day with the following events:

____________________________________________________________

 

Lecture on “Autism” and book-signing event –– “Meet the Author” DPI Series

Organized by the Autism Society of America,

in partnership with the Department of Public Information

Wednesday, 1 April 2009, at 6 p.m. in Conference Room 4.

____________________________________________________________

 

DPI/NGO Briefing on “Autism and human rights:

Understanding and safeguarding the rights of people with autism”

Thursday, 2 April 2009, from 10.15 a.m. to 12.15 p.m.

Dag Hammarskjöld Library Auditorium.

____________________________________________________________

 

Unveiling of an art installation entitled “Autism speaks”

(co-sponsored by the Permanent Mission of Chile and the Department of Public Information)

Thursday, 2 April 2009, at 10.30 a.m.

South end of the Visitors’ Lobby.

____________________________________________________________

 

Special gathering with representatives of organizations devoted to the field of autism

with a musical performance (organized by the Department of Public Information)

Thursday, 2 April 2009, at 6 p.m.

Dag Hammarskjöld Library Auditorium.

____________________________________________________________

Interactive panel discussion, and special screening of the award-winning documentary 

“Autism: The Musical”
(organized by the Department of Public Information)

Friday, 3 April 2009, at 6 p.m. in the Trusteeship Council Chamber.

All are invited to attend the above events.

For further information, please contact:

Ms. Graciela Hall, DPI (tel. 1 (212) 963-2300; e-mail dhlweb2@un.org); or

Ms. EditaZulic, DPI (tel. 1 (917) 367-8210; e-mail  zulic@un.org).

Technology vs. Tradition

It boggles my mind.  Maybe it should, or maybe it shouldn’t.  Why do businesses take perfectly good tools and break them to fit the broken process.  Why does logic have to leap out the window every time you put a tool into the mix?  You see my job is to find the tools to enable the business.  I put hard work and research into the tools, evaluating them, getting past the sales people, making sure that how we roll out a system meets the needs of the majority not the loudest screamers.  Adopting technology means you have to change the way you do things.  You have to define a process, revamp a process, and make it better.  If we were doing things perfectly we would not have an 80% turnover rate in our management.  Heck, I f we were doing things right, we would all be commanding larger salaries and using the latest tools and be on the cutting edge of technology.

Regrettably, we are not.  Considering the industry we are in it is a shock, and it worries me a little that the technology being used to support the development efforts of our commercial aircraft in the sky is sub-par.  Not because we can’t afford it or don’t know it’s out there, but because we don’t understand it, and besides it’s comfy in this here bubble. 

It is amazing that one person can derail the use of a system and in essence render it ineffective and useless with one email, based upon one conversation with one corporate lawyer, 10 months or more ago.  What is more appalling is the inability to figure out who to talk to about the issues; informing oneself not just up the food chain, but down and laterally too.  The irony of all irony is that I was forced to sit through a 5 minute online “ethics” training that very day about good communication and not discounting people’s input.  

Assuming that everything remains static or will remain so is to be blind and repeat the same mistakes over and over.  Unfortunately many people get paid on that very premise, built careers on it even.  There is comfort in that lack of understanding, and lack of ability to move forward and progress.  “We’ve always done it this way” is our mantra, our comfort zone, our way of spinning out wheels.

The Bio-Medical Stuff

So, finally we got ourselves in to see the local DAN (Defeat Autism Now) doctor in Ventura.  It was several years in the making.  We had heard about these practitioners and varying degrees of satisfaction with their results from other parents.  Bear in mind that all other reviews were for doctors in other areas, Los Angeles, Orange County, other parts of the country.  This doctor was different, he didn’t bleed us dry as some of the other parents had complained and had been a deterrent for us for a while, especially with two boys.  On more than one occasion we’ve had to decide who needed to go worse at the time.  Our doctor even gave us a 2-for-1 special!

Cost aside, we have been trying to educate ourselves for going on 4 years – (wow! it doesn’t seem like autism has been a part of our lives for that long).  We’ve looked at all of these things that could be underlying causes of the behaviors.  I’ve read up on gluten free/casein free diet, candida, chelation, B12 shots, and many other biomedical interventions for a while now. 

Try finding a pediatrician or regular family practitioner that will acknowledge that there is any merit to doing these things that doesn't look at you sideways, completely crazy, or totally stupid.  It can be an incredibly degrading experience to ask a doctor about many of these things.  They make you feel as though you don’t care about your children that somehow you are the one doing something wrong, or that just can’t cope with the fact that you have a child with these issues.  There is a real apathetic tendency in many of the doctors I have come across in the course of the last 8 years to write off your concerns as a parent, or dismiss your ability to intuitively know whether something makes sense for your child.

All of this has caused me to come the realization that we have to break a stigma.  Our society has this notion that doctors are all knowing.  The most refreshing thing I’ve come across in recent years is a pediatrician who is open to the fact that we don’t want to risk vaccinating our third child with the first two being on the spectrum, and hearing him admit he doesn’t know much about autism. 

Let’s face it – most of these doctors have been practicing as long as I’ve been alive; in some caseses longer.  It begs the question whether any of them have picked up a book in as long – or whether they realize that there are still people out there that have critical thinking skills and can read and don’t always accept the first answer given to them.  Mainstream medicine including doctors, medical practices, and hospitals are making decisions based upon what is in their best interest financially – not the best interest of their patient’s health.  That however is a topic for another day. 

The point I am trying to make here is that we as parents have a responsibility to be the advocates for our children to ensure the best possible care and best possible results for our children.  No one is going to look out for them the way we will as parents.  It has been my answer when people have asked me about doing the diet, and it holds true of any and all therapies.  Don’t rely on anyone else to tell you something is or is not working for your child.  You know your child better than anyone.

If anything, after our visit to the doctor I feel a little guilty.  I feel like we sat on the information that we have slowly gathered over the past few years too long.  It almost feels as though we should have done some of these things sooner.  We knew they needed to be done, or something needed to be done.  The reality is that critical piece was missing; the support and reassurance from a professional that respects and acknowledges our concerns and observations as parents.

Time will tell how these treatments go for the boys.  They are now 7 and 5, there are still a few critical years of development to go, with luck and a great support system we’ll turn them around and make a difference in their behaviors, their social lives, and their futures.