“Do you have the address?” My husband spoke as he drove in blowing rain. We were on our way to meet a Doctor who would either determine our son John qualified to receive SSI benefits or not. I was on edge; when it came to John, years of dealing with judgmental professionals left me hurt, confused and often angry. It was not just that I was ashamed to be filing for assistance; rather I saw this as the final blow of stinging failure not to have been able to recover John and send him off to college.
“Yea, that old red two story office building next to the post office on main.” I said as I looked out the window, my heart heavy with the feeling of failure. For sixteen years I had been dragging John to offices seeking help and hope, now I was dragging him to an office to say, Mom failed, now he is eighteen will you give him that golden reward we have heard about so many times over the years? Assistance.
Inside the office I felt as if I had just stepped back in time some thirty years. Dark paneling covered the walls and the floor sported worn out shag carpeting. The collection of Fisher-Price toys looked like collector items off eBay. John walked in with a big grin on his face, found a chair and sat down. A minute later he spotted an old Sesame Street toy that he simply had to have and I helped him wind up the back to make Ernie sing the rubber ducky song.
“Hi, you the Baileys?” A man who looked a bit like Mr. Rodgers, complete with cardigan sweater said as he walked into the room. Without waiting for me to answer he went on. “Sorry it’s such a mess, I am without a secretary, she had a baby, but you just make yourself at home, I’ll get your file and call you back in a second.” He walked out of the room and I could see him sit behind a large desk. Little did I know without a one way mirror he was busy watching John, and our family interaction.
Marshall had parked the car and was now coming into the office with us. He said nothing as he slid in a chair near me. I could tell he was looking at all the old toys scattered on the floor and stuffed in old shelving. John was busying playing when we were called into a large testing room.
John sat down first, facing the desk of the doctor and choosing the middle of three chairs. Marshall and I sat down on either side of him. The doctor looked at the three of us before he spoke.
“I’ll be frank folks; I don’t know why you are here.”
“We were sent by the state…” I started to tell my story but he held up his hand and stopped me.
“Yea I got that, I got your file.” The doctor thumped a huge stack of papers that reminded me more of a thesis than a medical file. “What I mean is, anyone can see John is disabled, and with his lack of speech and physical abilities in handwriting, I can’t test him, well not for educational classes or work. I mean you and I both know, where he stands on such. It’s a no brainer. But as you are here, can I help you in anyway?” He paused and sat back in his chair as he spread his hands out open.
“Only, with the SSI, I mean, can you help us prove he qualifies?’ I asked softly.
“Done. Yes, this is the person Social Security should help. But I mean in other ways, like is John ever sad or depressed, do you see that in him?”
“If he is anything, he is conceded, bold and very self assured.” Marshall said trying hard not to laugh as he described John.
“I kinda picked up on that, look at his body language, look how he took that middle chair, look how he looks me dead in the eye and smiles, this boy, you John, are very sure of who you are aren’t you?” With that the doctor leaned over the desk and held out his hand to John. John took it and shook it in his limp weak muscle tone way.
“He is non-verbal, so how do you communicate?” He was looking directly at John as he spoke. I looked at Marshall before I spoke.
“Hand touches. He knows sign language, but the cerebral palsy makes his motor control difficult for using it, so we modified a few necessary signs. Ask him a question.”
“John, are you autistic?” The doctor asked boldly. John reached across the desk and shoved the doctor’s hand backward, his sign for no. The doctor grinned and laughed. “I can see from that look on his face and in his eyes, that’s a strong no isn’t it.”
“Yes, sir, a shove to your hand is no, touching your palm is yes.”
“John, do you understand what autism is?” John calmly reached across the desk again and touched the man’s open hand. “John, were you once autistic?” Again John touched his open hand. “John, you are autistic right?” He asked. John jumped to his feet and leaned far across the desk and shoved the man’s hand hard. The doctor tossed his head back and laughed then grinned at John and said, “I know you aren’t son, you are one smart cookie, I really know you know who you are John.”
“Listen parents, I know this is hard, but I want you to really look at your son. I read his life story, I know where he was, what he was like and look at him now. This young man before me is not autistic; he is just physically disabled and mute. I don’t know what you did Mom, I don’t know what program or biomed or combination you used, but whatever it was keep it up. You are winning, John is winning, by golly, you are half way there and I don’t see why you can’t fully recover this young man over time, just keep it up.” He stood up and smiled. “It was nice to meet you all, don’t worry about the state I’ll deal with all this paper work, you just take today and enjoy all that you have accomplished over the years. In my book, half recovered is better than nothing, and your half is quite impressive. You could give so many of my parents hope, and sadly so many John’s age, well they aren’t as blessed, but then they didn’t have you for parents either.”
That was it. I had brought my big guns loaded to defend John’s disabilities and yet, here was a person seeing beyond the cannots and seeing the cans. What a breath of fresh air. Marshall, John and I walked out to the car in drizzling rain.
“I think the rain is letting up.” Marshall said absentmindedly.
“Yes it is, I think the sun is going to shine.” I answered as I opened the car door for John.
“Honey, look at your son, in our home, the son will always shine.”
He does, John shines brightly as we continue to work to help him become all that this life has to offer him.
Latest posts by Cheryl Bailey (see all)
- A View in the Mirror : Why I Don’t Light it Up Blue, But it’s Cool if You Do - April 9, 2015
- Teal is the New Orange for Halloween - October 28, 2014
- Navigating Public Places with a Child with Special Needs | An Open Letter to Rude People - September 10, 2014