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.

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?