Chapter 3: Holding Out

From my Facebook account May 20, 2010:
Kathy and I had our lives planned pretty well. I was a mid level manager with the City and I was due to retire at age 57. With our retirement plan and deferred compensation, we would receive approximately 80% of my annual salary every year for the rest of our lives. We wouldn’t be rich but we would have choices; in many ways, having choices is the definition of comfort.

The two year period following Danielle’s diagnosis caused me to question my direction, my focus and my idea of fatherhood. The stress of dealing with Danielle’s disability was taking a toll on Kathy. I was working 50 plus hours each week. My job called for me to work rotating shifts; I might work the Symphony performances Friday thru Sunday evenings, take Monday off and return to work Tuesday through Friday morning on a tradeshow or convention. The schedule was different every week. It was solely based upon what was happening in any of the seven (7) facilities I was responsible for managing. The ever-changing schedule was what I loved about my vocation. I’ve never been a 9 to 5 person. When I was a young man, I couldn’t imagine sitting at a desk for eight hours a day. The ever-changing environment of event management was the ideal way for me to make a living. From theater to arena to convention center to ballroom to auditorium, every week was different. However, as with many relationships, the thing that attracts you most is what tends to drive you away, in the long run.

The constant change in my work schedule was creating havoc at home. It is difficult to plan family activities when you don’t have regularly scheduled days off that your spouse could count on. This had never been a problem before. I’d been working like this for nearly 15 years and we enjoyed the benefits that went along with my position. My girls attended Ballet performances and they went behind the scenes on some really fun and unique events; America’s Smithsonian’s U.S. Tour, “Dora The Explorer Live”, the Symphony, the Harlem Globe Trotters and the Charity Ball. I’ve always believed that it’s important to introduce your child to a wide variety of cultural activities and we were fortunate to have the opportunity to expose our girls to all of these wonderful the things and more through my job. Kathy also enjoyed the access and opportunities that my job provided. However, things had changed dramatically for us over the past few years. What we needed was stability and routine; two things you don’t get as the Senior Event Services Manager for the City. The job that I loved had become an obstacle, a hindrance to my ability to provide the physical and emotional support that my family needed.

What about the plans we had? We were only thirteen years away from a fairly comfortable retirement. We have seventeen years invested in this “plan” and things are going as scheduled. If we could just hold out, things will work themselves out. Or will they? Remember, “early intervention is the key to success”. These words echoed in my mind constantly. I began to question our plan, what was the reality of our situation? When we do retire, what would we be retiring to? Would this be a smooth transition into a life of relaxation or would we retire to provide full time care for our disabled daughter?...”early intervention is the key to success”. Where am I investing my time?

Soon, my questions went beyond just the legitimacy our plan. I began to question everything; my faith, my strength, my commitment to my wife, my ability to lead. I was constantly haunted by something that I had to confront head-on. I had to make a decision about what was important in life. If being a father meant making sure that there was a roof over our heads, food in the house and clothes on our backs, then I was fulfilling my role and more. However, the questions continued to resonate in my head; was I doing all that I should do? Was I doing all that I could do? After all, “early intervention is the key to success”.

One of the most disturbing aspects of this disability is all of the “unknowns”. No one can give you a long-range prognosis because every child is so different. As parents, you really don’t know what you’re planning for; are you saving for college tuition or for long term assisted living services? The experts can’t tell you, all they will say is “early intervention is the key to success”.

We are thrilled when we hear about parents like Jenny McCarthy and the success their children have experienced with changes to their diets. So, we think perhaps this is the answer we’ve been waiting for; only to discover that what worked so affectively for her child has no apparent benefit for you child whatsoever.

Every parent of a child with autism has heard of Dr. Temple Grandin and her miraculous story. Many parents see Dr. Grandin as an example of what their child could accomplish with the proper education, therapy and support services; realistic or not. As parents, we see the possibilities; we witness those glimpses of what our children are capable of through hours of interactions. It’s so difficult when you look into you child’s eyes and you know that given the proper help, your child could someday live an independent life but the proper help is beyond your reach.

There is a wonderful organization called Natural Learning Concepts, http://www.nlconcepts.com/, that features an online article called “On The Spectrum.” These articles are written by people who have autism. Their stories are both informative and inspirational. When you read a story or an interview of an adult who has learned to function within the “norms” or boundaries of his/her community, it gives you hope and inspires you to continue to hold out for that miracle.

In a way, it is a cruel and slow brand of torture for many families. Hope can sometimes be exhausting and inhumane. Of course, you can’t give up; what if the one thing you did not try was the answer you were looking for all along? So, you continue to hold out for the miracle. You end up chasing any and every lead that arises, just hoping that something will prove promising for their child.

I needed to ask myself some very serious questions. Was I doing all that I could do to help my family? How would I feel if I retired and found out that I could have helped Danielle if I had invested the time when she was in her formative years? Should I continue to hold out and hope for the best or should I invest in my family now, in order to insure our long-term survival? How do I do that without jeopardizing our plans for the future? After all, my job is what sustains us. The rotating and ever-changing schedule that we struggle with is what pays the bills and allows Kathy to be a stay home mom.

What we had to do was take a long look at the reality of our situation. Was our retirement plan the priority or was the health and well being of our girls the priority? The answer to that question came very easy to us. Our girls are the center of our world. The plans we made, the goals we set were all artificial and presumptive. The only true reality was that our girls deserve all of the tools and resources we can muster.

The reality of what we needed to do was more than a bit sobering. I had to find a job that would allow me to spend the quality time necessary to help my family. This was not going to be an easy task. The job market wasn’t really strong and I was 45 years old. Attempting to re-invent yourself at 45 is a daunting task, especially when you hadn’t planned to make the change in the first place. I had been in the special event management field for nearly 25 years. There aren’t a lot of jobs that call for the unique set of skills required for logistical/production management. I didn’t want to go back to concert logistics or stage management, I was much old for that life style and the time commitment and scheduling would continue to be a problem. I don’t have advance computer or technical skills and in the Silicon Valley, that is nearly sacrilegious. However, the task at hand was clear; I had to make a change or risk suffering the long-range consequences of doing nothing at all. So I started looking for work in the Fall of 2005.

Now that we were willing to let go of “the dream”, what were we going to do to affect change? I’m committed to the change, now what? How do I help Danielle and help other families who are struggling with many of the same issues? We don’t have money, we don’t have political connections, and we don’t know where to start.

In November of 2006, I interviewed for and was offered the position of Vice President of Administration, Planning and Program Development for a local nonprofit organization. I recognized this as the ideal opportunity for me to learn the how the nonprofit world works from within a well-established and successful nonprofit organization. If offered this position, my path would be set. If successful, perhaps I could persuade the Executive Director to assist me in developing and implementing programs to assist children with autism, their families and caregivers. I couldn’t have asked for a better opportunity. I decided to jump in, head first.