Matthew started out life in the NICU and a with very poor prognosis. He was diagnosed with cerebral palsy by six months of age. I probably knew he had CP by about six weeks of age. Every single red-flad was present, and as an OT I had the training to see all of them. Because he was labelled as a “special needs child” very early in life I was inundated with feedback from a wide array of sources about my new life as a “special needs parent”. I received all sorts of predictions. My marriage would surely not survive. My journey of caregiving would be the most meaningful thing EVER. Umm. Sure.
I also received advice. Lots and lots of advice. Some of it wasn’t very helpful. Like the best way to avoid a feeding tube was to let your kid get good and hungry because then they would surely eat. Spoiler alert – that one is crap. Thankfully I had the sense to ignore it.
The best advice I received? Choose your battles wisely because there are more battles in this life than you can possibly imagine.
I cannot tell you how helpful that one sentence has been over the last 18 years. That sentence conveys two really important pieces of information. First it lets you know that your energy is going to be stretched and that you are simply not going to be able to take everything on. You’re going to have to be able to identify what is really important and spend your energy there. The second is the more obvious one – that there are more battles than you EVER expected. Let me tell you. That part is true as well.
When I gave birth to Matthew I was an occupational therapist. I had been trained to understand the special needs world. I spoke the jargon fluently and I understood the multiple funding silos involved in the world of disability and the difficulty managing those silos. But I really didn’t “get” how challenging it would all be. Or how adversarial it would be. Let me be clear. There are some pretty wonderful people out there helping families like ours. But sadly their hands are often tied since they live and work in the same complicated and unfriendly system. The system “supporting” complex kids is tortuous, complicated, underfunded, and often not particularly user-friendly. It is full of roadblocks and challenges, many of them needless and silly, that frustrate the most dedicated professionals and parents. And at times the system is outright callous and staffed by totally insensitive administrations that seem to see people with disabilites as nothing more than a bundle of (often high) costs, and body parts. I can remember one meeting where my son was talked about as a collection of body parts. The discussion involved who was responsible for what body part, in what way, and at what cost, rather than acknowledging the fact that he was a person worthy of dignity and care. It was one of the most dehumanizing and insensitive conversations I have witnessed – and I have lived through a freaking malpractice lawsuit people!!!
I quickly learned that if I engaged every possible battle I wouldn’t have the energy to take on the ones that really mattered. So early on I asked myself how on earth I would figure out what battles were important. Wasn’t everything important? Wasn’t my son worth my going in to every situation ready to duke it out for whatever he needed? Isn’t that what a good mother did? I decided it wasn’t. I decided that being exhausted and angry all the time would not translate into good parenting.
So in the early days of parenting Matthew I developed what I call my “triage list” that I still use to this day. And while I always try to address situations collaboratively and constructively, and often that works, there are no shortage of possible battles when you raise a kid with special needs. Trust me.
In order of priority I decided I would engage an issue if it did any of the following: 1) Compromised or threaten to compromise Matthew’s health or medical stability, 2) Compromised or threaten to compromise Matthew’s quality of life, and to a lesser extent but still important, 3) Compromised or threaten to compromise the quality of life of our family or of individual family members. Numbers one and two were pretty straight forward. If I had concerns about Matthew’s health or quality of life I was pretty direct about my concerns and and need for a satisfactory response. An example would be when the hospital left Matthew in a bed I had stated was unsafe, ignored me, and then found Matthew on the floor tangled in IV lines at 3am. That was a battle I was not only prepared to take on, it was also one of the few situations when Fang was released from her cage. The ensuing conversation wasn’t pretty, but Matthew has had 1:1 care to ensure his safety every hospitalization since.
When it comes to number three, the QOL of the family or of family individuals, I tend to take a more nuanced view and I also try to factor in how my quality of life can also be adversely affected by the ongoing stress of “battle”. Sometimes the battle is worth it and sometimes it makes sense to walk away. For example, two years ago I decided that navigating the school system had become unsustainable. I had been advocating (battling) for years to have Matthew’s needs met, and to have Matthew viewed as a valuable, contributing member of the community, but these conversations seemed to fall on deaf ears. Matthew would never function at grade level. He required very heavy, complex, and expensive care. Matthew was always being spoken of as a burdensome responsibility. Decisions were made about his care based on union agreements rather than his needs or best practices. The above-mentioned body part conversation happened at as school meeting. I had one senior administrator tell me “this is how the system works, get used to it”. Most conversations about Matthew felt dehumanizing. Every meeting, every phone call, EVERYTHING, was a battle waiting to explode and I was tired of it. Constantly advocating for my son in a system that didn’t seem able to see his potential was draining beyond words. Weighing the energy required against the issues of Matthew’s health and quality of life, not to mention how all the battles adversely affected my quality of life, eventually made the decision straight forward. We decided the battle was NOT worth it and we pulled him from school and haven’t looked back. Best decision ever. I am sure I have fewer grey hairs as a result.
I cannot remember the parent who told me to choose my battles wisely. I know it was a parent. But that one piece of advice has been one of the most influential sentences in my life. I am grateful. And when young parents ask me about any advice I might have to offer I tell them to sort out what is important to them and to use that information to choose their battles wisely.
Someday I hope to live in a world where that advice isn’t needed because we live in supportive and inclusive communities that support people with disabilities without question or difficulty. But sadly we’re not there yet.