I’m not proudĭoing? Dragging my vegetable around from appointment to appointment like it It was hard for me to get through the book and cope with Much of Keira is still hiding in there? If we tried harder, what could she do? I mean, I know that Keira is no Stephen Hawking, but how Intelligence and when a keen observer finally noticed, Martin was able to get the help he neede to be able to read, talk, get a job, and even publish the book. Made up? You see, they eventually found that the young man was of average How much of what we believe about Keira is accurate and how much is Martin’s family assumed for many years that he was no longer “in there.” They believed their son was gone and was incapable of intelligible thought. If we hadn’t been there all along the way, insisting that the therapists andĬaregivers wait and watch? Teaching them to notice her?Īs I continued to read, I experienced so much anxiety that I We’ve done so well! Keira would likely be a ‘ghost girl’ if we weren't such receptive, active parents. Atįirst, reading his story was really validating to me. Stripped him of all volitional movement and the ability to communicate. Who was typically-developing until late childhood, when an unknown illness There was never a doubt that she loves this guy!Ī while back, I read a book called Ghost Boy by Martin Pistorius. Mean, how stupid do I look when someone asks me what her favorite color is and Often have I have assigned something to her because I had nothing else to go on? I Much of what we attribute to Keira is really her? How often do I attribute my own preferences and anxieties to her? Does it matter? Am I doing a good enough job of trying to decipher who she is? How Lies so much of what is difficult about our life. However, others can identify personality, which is the outwardĮxpression of what a person thinks and feels.īut what about when a person’s body is so severelyĬompromised that so very little is physically and verbally expressed? Herein Our tastes, our aversions, our interests, our motivations, ourĭefine the self except the person themselves. Speaking, it’s the essence of who we are our tendencies, proclivities, and What makes a person a person? What is “self?” Simply At best, a good advocate will help to maximize a person’s interpersonal relationships and functional independence.Īt worst, poor advocate will suffocate a person’s uniqueness and may even exploit her disabilities Generally a positive term, I think an advocate's effectiveness ranges immensely. Far from inconsequential, her potential hinges on my ability to be a good advocate for her. Advocacy is a word I knew only vaguely before Keira's birth.
Term for healthy realization of both those concepts. The contents probably warrant a dissertation or two. First, t he concepts of a) the developing self in a disabled body and b) the particularities of parenting children with severe disabilities are vastly complex and no matter how well I write, I have come up with a couple of conclusions while wrestling with these ideas. Is important, I want to put words to it before it’s too distant a memory. Honest, true, and undeniable, peaking out more and more in such a way that’sĪlleviating my own internal battle with the issue. Time is now because surprisingly and thankfully I’m seeing Keira’s personality, Really found a great way to put the quandary into words.
I’ve written it in fits and starts and never When Iįinished drawing all the connecting lines, I handed it to Jeff and said, “This Shows what I’ve been managing for K during the past week. This one makes more sense than most I’ve tried before. Wonder if I could organize and galvanize my thoughts by illustrating the issues Their state of being comes at a high cost to their emotionalĪnd physical health, but it helps ensure the safety of those around them. For soldiers, standard treatment for anxiety is oftenĬontraindicated. For soldiers,Īnd in many ways parents, the hypervigilance, sleeplessness, planning, and advocating These parents feel on an ongoing basis serves the purpose of keeping them alertĪnd ready for the next inevitable, albeit unpredictable crisis. The “trauma”, or at the very least, the intense anxiety that On PTSD, however, have shed some light on these families by comparing them to Grief of parents with medically fragile children has not been well studied. In preparation for a talk I plan to give on anticipatory griefĪnd coping for families like ours, I’ve recently discovered that the particular