Whether you have a disabled child or not, at some point in life you will either be the spokesperson for yourself and/or on behalf of someone else who requires representation. It behooves us all to be willing, ready, and able at all times to advocate for ourselves and for those who depend on us. In the special needs world, advocating for our children is a lifetime assignment. Advocating is time consuming, often frustrating, as well as unfair in many instances, but in those difficult moments we must remind ourselves that our kids are really depending on us to do the right thing. I think besides loving our children, the way we advocate for them is the most important thing that we will ever do and the results of our efforts will ultimately determine their quality of life. It’s a huge assignment and truly requires taking one day at a time..
I never realized the full extent of how important advocacy would be, not only in Brian’s life, but in my own life as well. Prior to Brian’s birth, I could have never imagined being my own advocate, let alone being one for someone else. Part of an advocate’s skill set requires the ability to research and be well read on the particular subject in question. I find this aspect of advocacy interesting; I have always enjoyed learning and creating outlines/notes or key points on what I’ve learned. This was a process I learned years ago when I wrote term papers or many other writing assignments. This is why I love to write today: I enjoy the written word, whether reading or writing about it. Conversely, oral presentations or speeches scare me half to death!
Even though I am an outgoing person ( at least for the most part), I have never been comfortable with talking in front of a crowd. My speech class in college was one of the most painful experiences I ever went through. Call it stage fright, insecurity, and/or being self conscious, yep, I have all three! For those who know me pretty well, you probably find this surprising, but it’s absolutely true. These feelings of intimidation and lack of self confidence were still a big part me when Brian was first born. There is no question that feeling extremely overwhelmed had a lot to do with it, but I quickly learned that regardless of my position, Brian needed an advocate, as all children do. I truly had so much to learn!
In the very beginning, I took baby steps, reminding myself of each victory, big or small. Interactions with Brian’s doctors were the first opportunities for advocacy on his behalf. I had to learn as much about Down syndrome as possible and compile my questions prior to each pediatrician visit. Luckily, I had prior pharmaceutical sales experience, so I was used to speaking with doctors, but I still needed to learn to assert myself with the doctor, making sure my concerns regarding Brian were addressed to my satisfaction during each visit. You know how doctors can be, especially when they are running behind schedule! Sometimes, Brian and I would leave a visit not entirely satisfied or on a rare occasion, I did not return to a doctor who was dismissive of my concerns or Brian. Nevertheless, I learned to persist on behalf of my son, my first formal lessons in advocacy, with many more to follow. It was uncomfortable at times, often exhausting, but always necessary. Advocacy is still all of these things today, but with much more intensity, repetition, and conflicted feelings that range from elation to extreme frustration, sometimes simultaneously.
Sometimes I wonder just how long I can keep up the pace of managing every aspect of Brian’s life and that scares me to death… Advocating for our special children is indeed a full time job from dawn to dusk. Sometimes, we don’t even know how we get things done on behalf of our kids, as some days are obviously better than others. I try to give myself a LOT of slack, because life is long with our kids and their needs: neither are going anywhere! Each interaction you have with anyone involved in your child’s life typically requires some form of advocacy. The school system, for example, is an especially multi-layered/complex behemoth to tackle. You know exactly what I mean: annual IEP meetings and dealings with our school districts can be quite intimidating and require copious amounts of patience, knowledge, and the ability to advocate for each of your child’s educational needs. Sometimes, we have to pick our battles and ask ourselves: “how important is ——?” I’ve decided to let certain things go over the years, but persist with those resources that I believe Brian needs. Sometimes, a compromise between home and school has been the end result. I have learned how to be negotiate, when to be flexible, and when to stick to my guns. It has taken many years, losses, victories, and determination, for advocacy often requires these things as well.
Advocacy for our kids also occurs with extended family members and friends, volunteers. I am Brian’s voice, his representative, and strongest advocate. Similar to an attorney, I present Brian’s “case” on his behalf to all who interact with him : his needs, how to best help him, etc. I have written down many things in what I call the “Brian Bible”, a comprehensive narrative of anything and everything that you ever wanted to know about Brian. This document has come in especially handy when Brian has gone to overnight camp or for a babysitter and home therapist. It’s important to document relevant information so others know what to do. This becomes especially essential later on when we parents are no longer here or are no longer capable of helping our children. This is now the perfect segue to a very important topic: special needs trusts.
Jim and I decided to create a special needs trust for Brian about 6 years ago. It was the ultimate act of advocacy that we could do on behalf of Brian for his legal protection. We met with a disability attorney and did estate planning, creating our will, medical directives, power of attorney as well. We don’t actually have anything in the special needs trust at the moment, but upon our death, everything that we own will automatically go into the trust for Brian. Perhaps as you are reading this, you are being reminded to get this done for your disabled son or daughter: I urge you to not delay and proceed! You will be so glad that you have a special needs trust in place and the peace of mind that comes with doing so is priceless!
Being Brian’s advocate has taught me how to speak up for myself, Brian, and even my parents, when each of us were going through our own medical challenges. I was especially effective advocating for myself, much to my own surprise, while going through colon cancer treatment, as well as for my Dad when he was diagnosed with lung cancer in early 2014. Although Dad ultimately passed away from this horrible disease a few months later, it was a privilege to speak on his behalf and represent his medical interests during those very difficult meetings with doctors and throughout his chemo treatments. The same has been true for Mom during her many ups and downs since Dad’s passing. I am grateful for my previous advocating experience that has allowed me to help Mom legally, medically, and in the every day things.
I look back on all of these experiences and realize that my advocating abilities began and have been honed over the years because of a precious baby boy who radically changed our lives almost 18 years ago. I am grateful for all of the blessings that have resulted from advocating on Brian’s behalf. I wish it wasn’t such a struggle so often, but I suppose one really does appreciate the sunshine so much more when in the midst of a torrential rain storm..We have advocated enough for our children over the years to know that despite the many difficulties that will inevitably come, the reward in the end is always worth it.
Wishing you strength, hope, and many victories as you advocate for your loved ones, one day at a time… Until next time, thanks for reading! 😊