Your autistic son who is 25 years of age will not be the same person in body, mind, and soul that he will be when he is 50 years of age. He will be a grown man with a mismatch in an age appropriate cognitive or social skills.
My brother had uncontrolled grand mal seizures, 4 or 5 a day, from early childhood until his mid-40’s. Full grand mal seizures. Falling down, thrashing, spastic seizures that are freightening for lay people to witness. The seemingly simple task of a family outing to the grocery store often ended up with a grand mal seizures and display cans tumbling down a shopping aisle.
At the age of 16, my brother was diagnosed with a malignant Grade IV glioblastoma multiforma brain tumor, the same malignancy that claimed the life of Senator Ed Kennedy and Joe Biden’s son and that currently threatens the life of Arizona Senator John McCain. I was 12 years of age. My brother was given a bleak 6 month prognosis. That my brother is alive, today, is nothing short of a miracle. Pathology slides from his partial resection remain as an intriguing case study at Stanford University in California. It is postulated that his immune system was able to eradicate the tumor, similar to emerging research in immunotherapy.
Fast forward to the present. My brother has moderate cognitive deficits and moderate right sided spasticity and balance/coordination deficits. He is what I would term, “walking wounded.” My brother can walk and get around, albeit with effort, but lacks common insight and executive reasoning skills to be able to function fully in society. A substantial irrevocable trust was established in his name and provides for his needs. Ever increasing costs of living and lowering rates of return on investment instruments is a concern. What seemed like adequate financial principle (in the 7 figures) to last his lifetime is always a concern on my conscience.
There was no special education or dedicated programs for my brother or other children with special needs during his childhood, and extending into early adulthood. This was circa 1970’s. As a family, we toured private residential care facilities on the advice of physicians/neurologists. Most residential facilities were designed for children and young adults with profound Down’s Syndrome. Private care exceeded $5,000 a month in 1975. We came home and soldiered on.
My brother’s afflictions have affected the basic core of my essence of being.
It is a simple truth that your unaffected twin will be impacted by his assumed roles as a caregiver to his autistic twin brother.
You may not readily see outward signs in your annointed caregiver son. I was a master at shielding the effects that weighed on me. I strived to be a perfect and uncomplaining child. I felt an enormous duty to keep my nuclear family intact. I did not want to add burden to the fragile threads that held my family together.
The lens though which a child sees family dynamics is vastly different than the lens by which an adult sees and processes the same situation. Do not discount that family dynamics (largely beyond your control) shape and influence your unaffected child - who he was, who he has become, and who he will be. Our past influences our future.
If you do not see that your unaffected child, in accepting to care for his twin brother, will be adopting a role that will have deep and long-term impacts on his life’s trajectory, I encourage you to talk with a psychologist to examine your own possible protective barriers. Maybe the day program that your autistic son attends has a psychologist on staff who works on issues that address maintaining the integrative health of the family.
I am paying the ultimate cost for my brother’s afflictions. My health is seriously compromised. There is no “fix.” I will not be getting better.
I have but this one life that was granted me. There is no do-over. No second round. No alternative off-ramp from the freeway lane that I travel.
I grieve what I might have done otherwise or accomplishednin my life. I grieve the opportunities foregone. I grieve that I gave so completely of myself to better the life of my brother that I have nothing left to sustain me. Barely flickering embers.
I sustained a substantial acute intestinal perforation in May 2012. In the hour following, I experienced a near-death experience. I was neither on this earth, nor in Heaven . . . somewhere in between. I had no human form. I felt no pain, as I had no body. I was in the presence of an all-encompassing energy source that I surmise was God/Higher Power. It was as if I was in a clear watered fish-bowel, immensely peaceful and comforting. I did not want to leave. I did not want to come back to earth. God/Higher Power made the decision that I had additional “work” to attend to in this earthy life, giving me 3 directives. There is not a day that goes by that I do not pause to reflect on the near-death experience and the 3 directives.
Mind you, I am a spiritual person but not overly religious in a strict sense of conforming to my Christian orientation as an Episcopalian. I used to stand in the check-out line at a grocery store and gaze at the National Enquirer with stories of near death experiences with a healthy degree of skepticism.
I was hospitalized for 57 days, with two subsequent admissions for post-operative complications. The total inpatient hospital stay was in excess of 80 days. Recovery was a long slog.
I believe God/Higher Power sprinkles the world with ambassadors and guardian angels who help provide insight and understanding to our individual lives and experiences. Perhaps I am meant to serve as a conduit to you - cracking
open a window to encourage authentic conversation within your nuclear family concerning care of your autistic son and tentative “what if?” scenario plans.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
Post Edited ((Seashell)) : 7/29/2018 4:56:06 PM (GMT-6)