How Do You Describe Multiple Diagnosis?

I’ve found myself oscillating between what to focus on, what label to give us, our family, my son. Which do I highlight? How do I explain? Where do I classify myself and our interests? Our causes? We have no single route ‘cause’ of our son’s afflictions. He isn’t even dually diagnosed. He has 5 separate diagnosis’. Five disorders / syndromes / events that define how he views the world.

How the world touches him, embraces or scrapes upon his presence is dictated by how these afflictions interact at any given moment. Defined by which is dominant at the experience at hand. Any time during the day, any family or social, familiar or unfamiliar event can bring about one, none, or all of these in full bloom.

How do I describe my beautiful son to others? To therapists, friends, programs, neighbors? To you? Do I tell you how remarkably beautiful and handsome he is. Enough so that many are taken aback by his smile, his complexion, by the essence of kindness, compassion and happiness that emanate from him? That even more are intrigued by the realistic possibility that he may be able to ‘make a living’ modeling? (If only all his afflictions could be in check).

That’s superficial.

How do I help a program find the best group match for him? Do I tell him that cerebral palsy is his primary diagnosis? Though it’s not. I’ve recently come to realize the thoughts playing in my mind, unsure if they were the right way of describing things…that cerebral palsy is not his primary diagnosis….just the first to be recognized.

Do I tell them he is autistic? High(ER), not to be confused with ‘HIGH’ functioning autism? Higher for a variety of reasons, but compounded because he has a speech delay that was / is caused by a rare epileptic condition (LKS) that targets his speech center, therefore causing a perceived speech delay that is not normally associated with high(er) functioning autism, but is in fact an inability to decipher the spoken word from let’s say…a dog barking, plane passing overhead, ramblings from a rambling mother?

Or that the LKS mirrors autism, sometimes causing mislabels; though in his case, the clarification, singling out of autism has been made, separate from the LKS? That the LKS is itself separate from the initial epilepsy in tonic-clonic form initially seen by us, which was most likely brought about by the brain insult from the cerebral palsy, resulting from an intrauterine stroke? That LKS isn’t usually associated with brain injuries but he still is classic LKS, or would have had LKS regardless, but the stroke occurred and ‘added’ to it?

Do I tell them that his sensory processing disorder compounds it all? That is comes in tow with the autism, or possibly the LKS, or possibly it was going to come into his life anyway? Do I tell them that all of these assaults against his mind have caused global developmental delays?

Do I tell them, do I tell myself, or anyone else that J.Browne would have, could have had these anyway, but they all came together because…well, because that is what was in store for his life, in this life? What do I focus on? How do I treat him? How do I define him, myself, our family? Our causes? What am I to be good at? How am I to know all of these subjects inside and out, as a good parent of a special needs child does, when there are so many to learn?

“The whole secret of life is to be interested in one thing profoundly and in a thousand things well.” – Horace Walpole

I’m finding that the truth, my truth, is that I am to know J.Browne profoundly and all of his causes, our causes, his afflictions, syndromes, disorders, events well.

…And that I should really find a shorter way of describing the interactions of his diagnosis’. What do you think?