When JR was diagnosed 8.5 years ago with autism his father, Rodney and I were floored to say the least. We were expecting to hear a diagnosis of ADHD. A diagnosis that he did eventually get about a year later.
The diagnosis blew me away because he didn’t act as though he were autistic. JR has always been a very loving individual. He always wanted human contact, kisses, hugs and just general loving.
I knew what autism was, and not from watching Rainman, but from a personal perspective. I had a girlfriend back in the early 80’s when I was in my early 20’s. She was a single mom in her mid 30’s. Her husband left her when the diagnosis came down. She was raising four sons. The older two were “typical” though one had ADHD. Her youngest sons, who were twins, were diagnosed with severe autism. Looking back I think they also had cerebral palsy as well. The twins were 5 when I met the family. I would spend most Friday nights with them as they were orthodox Jewish and from Friday night sundown to Saturday night sundown they were not allowed to do any physical labor, such as changing the channel on the TV, turning a light switch on and off, or driving a car. I, not being Jewish could do this for them. So I was at her house a good bit on the weekends.
Her son’s autism was nothing like JR’s. They would lay in the fetal position most of the time, had to be fed, bathed, everything. They couldn’t do a thing for themselves. Their hands had no muscle tone whatsoever and they reminded me of the hands of an individual with CP. They never outwardly reacted to interaction with anyone, except their mother. And that interaction was their allowing her to touch them, to hug them, to tickle them, to change their diapers and clothes. No one else could do any of these things or they would moan and groan as if someone were stabbing them. I never understood then why that was. I do now.
Back in the “day” in the capital of Pennsylvania there were no services like there are today. They each had one hour of physical therapy a week, period. That was it, there was NOTHING else available, nada, zilch and zero. I remember going to these physical therapy appointments with her. They were on Friday’s in the late afternoon so I often drove.
She had a very difficult life being a single mom. Being a single mom to four sons was enough. Having two with autism, God I don’t know how this woman did it. She was so strong and I admired her so much. Her ex-husband was a dead beat dad. He divorced her, moved to New York and started a new life with some 20 something. He rarely paid any child support. Money she could have desperately used as she couldn’t work outside the home because of the twins. I can honestly say that I hated that man.
At any rate, I speak of this lost friend because I wanted people to understand where my positive attitude toward autism generates from. In the early days of JR’s diagnosis I was known as the lady who saw the glass as half full. Most parents didn’t understand this and were resentful of my positive attitude. As a matter of fact I met a woman (from Florida I think) on line who also had a set of twins. When I made the comment of “if your child has to have autism then this is the time for it” because back in the 80’s the common parent of an autistic child knew nothing about autism, what it truly was and how it effected the mind, body and behaviors of a child. There were no real therapies and bio-medical was unheard of. This woman still went ballistic on me. Obviously she missed my point, even after explaining my reasons for saying it.
Most of my counterparts, to varying degrees reacted the same way as the Florida woman did. Others were doing the “woe is me” shtick. I won’t say I wasn’t there myself for awhile, a very short while, like 3 weeks short. However, it didn’t take me long to realize that JR wasn’t going to get a damn thing he needed without my advocacy. There wasn’t an agency that was going to help my son without me pushing them to do it. He had caseworkers that were worthless and I had to do the investigative process myself. A lot of what I learned came from other parents who were walking the walk for years before our feet were set on this journey.
I firmly believe that God puts people in our lives for specific reasons. Frances Cleff the mother of a set of twins that I had the privilege of knowing in the early 80’s was one of them. At the time I would never have guessed why. I just wanted to help a woman who was going it alone. The lessons I learned from her I will carry with me throughout my entire life. Thank you, Franny for being my friend. You gave me the “glass is half full” attitude that I still maintain. I think about you often and now is the time to rekindle our friendship. I wish I had done it before now.
Hope is a fragile thing. But because of parents like Franny and others I have met on-line and I guess me too, parents today of newly diagnosed children have more hope now than ever before. Use it well. Keep it alive at all cost. Hope is the one thing that keeps us going even on the bad days.