We’ve heard it said time and again, especially at this time of year: “Change is inevitable.” This is an infallible truth. However, what I do not hear much about is adjustment. We on the spectrum are not immune, but generally do not adapt as easily or well as our non-autistic peers.
I am a case in point. Very suddenly, my mom developed a chronic lung illness in 2004. She began to cough up blood and I had to be strong for her, calling 911, navigating the rapid mental processing of answering questions quickly while under extreme stress. She recovered to a degree with medication, but was re-admitted over the years. By 2011, it was apparent that she just would not be the strong person I knew and loved for 30 years.
Progressively, she was not able to garden, walk for long periods of time or go out to our quiet “haunts” (safe places where we could have fun). She went on oxygen and attended a bridal shower, where she caught a virus from someone. Bigger change yet was to follow. She lost a dangerous amount of weight. Hospitalizations. Loss of mobility. Most recently, loss of persona.
My mom has been my all (since 1994 after my dad passed). She has been mother, advocate and friend.
To say I’ve been slammed with one change after another since my dad’s sudden death 20 years ago is truly an understatement. Most non-spectrum people would probably (I am assuming here) look back and wonder how they made it through. As my mom once said, “We should write a book, but nobody would believe what we wrote.”
Dealing with her declining health is emotionally exhausting. Dealing with being “on call” from 2pm-11pm is an additional stressor. She can now be quite demanding and childlike (a normal result given the fact her brain is not processing as it did even 4 months ago.
Emotional roller-coasters are another factor. 4 ½ months ago, though weak, her mind was still strong. She drove me to my therapist. She required a lot of assistance getting out of the car and into the building, but she did it. I was so happy for her. Then she took another nosedive around Christmas-time.
Instead of hoping for driving, I will take just having her make it across the room without gasping and having to hold on to the furniture or another person.
I now personally understand what it is like to see a relatively healthy person suddenly regress beyond a reasonable and acceptable point. I know what it is like to fight as much as I can to find answers. I know it is not up to me, ultimately.
I will be an orphan one day, someday soon. An adult left to navigate life on her own. “Dealing” with people, versus relating to them as they may be educated but apathetic to autism-related behaviors. You can pay for a companion, but you can’t pay someone to love you. Love can’t be bought. Love must be earned.
I am blessed to have one aunt who contains traces of my mother, plus her own bubbly, outgoing personality. Another woman (who is my honorary aunt) lives far from me, but the phone does work.
I must remember that this illness is affecting my whole family. I try in little ways to let them know I care (little notes, e-mails and pithy compliments). I wish I could say that from family, first responders and society in general that the love was returned. I can’t.
The Bible says that a person is hated by the world for following Christ. Ain’t it the truth. The world did not recognize the Light. It tried to put Him out. The good news is that it has not succeeded and never will. I just hope I can follow his example until my time comes. Isn’t that the best any of us can hope for?
“Owner of a lonely heart, much better than an owner of a broken heart.”-Yes
“Look for the silver lining and find the sunny side of life.”-Chet Baker
“In God have I put my trust and confident reliance; I will not be afraid. What can man do to me? Psalm 56:11.
He can beat me, attack me, chastise me, persecute me and bully me, but I’m still going to heaven when I die!