Everything changes…we have been blessed to have our fifty-six year old autistic son, Ben, be able to come home several times a year for week-long visits for 43 years. Several other times a year, we visited him in Conway and took him out overnight to a hotel and to dinner, so we all could just enjoy being together. FORTY-THREE YEARS! Just think of it…from age 14 to age 56…he came home and went right into his “home” routine, and then back to Conway, and back into his Conway routine…never faltering, always happy to be here…to do whatever we did, to see relatives, and to relax “at home”, and then to go back. My husband and I are both 80 years old now, and don’t quite have the “resilience” we once did to keep up with it all like Ben does. We notice though, that he is changing as he ages too.
This Christmas seemed different from the start. I went with Jay to get Ben because we were already in Ft. Smith (which is 2 hours closer to Conway). Ben was glad to see us, and all seemed well. Then, on the way home, my purse got left at Clarksville, AR and when I missed it, we had to turn around and drive 10 miles back there to get it, so 20 miles was added to our trip. (Luckily, some honest person had turned my purse in, and ALL was intact…money, credit cards, insurance cards, and driver’s license.) Anyway, we got home safely and rested, but we heard Ben up in the night…opening and closing his chest of drawers. He has NEVER gotten up in the night while at home, so that was unusual. I noticed the next morning that he had changed pajamas several times that night. We said nothing about it though, and went on to Church and Sunday school. We had recently joined with another Sunday school class that is much bigger, and meets in a different room than before, so I could tell that didn’t quit sit well with Ben. However, he was a trooper, and all went well. We went out to eat on the way home, and he got his favorite…pancakes, bacon and scrambled eggs. Then he took a nap after we got home. All our family (Ben’s sister and brother and niece) were coming for Christmas the next day, so I had been working around that afternoon, getting ready for company, and was tired by the time he awakened. I noticed that Ben seemed different…and that he might be having an impacted bowel and that, in turn, was affecting him in other ways. I saw that evening that there were several outfits in his clothes hamper…jeans, t-shirts, undershirts, underpants, and even socks. He had changed the WHOLE outfit when his jeans were accidentally lightly soiled due to his physical problems. When I said something about that to him, he started hitting his face with his hands (not his fists)…and getting quite upset. We knew there was always the chance for this to happen, as that was the reason he had to move away from home in the first place at age fourteen. He had upsets that we could not physically handle then, but it had NEVER happened before at home since he had moved away. So, like his periodic seizures that we had never witnessed until recently, it was a shock to behold and it was scary, because again, like the seizures, you don’t know how it will manifest itself…will it be contained, or will it be a full-blown meltdown? Ben is big (5’10”, 210 lbs, and I am little 5’1”, 125 lbs.). My husband is not a match for him when he is upset, so we would not be able to combat or contain him once the sequence is started. I left the room and was going into his closet and started to tell him that some of these clothes were not soiled, and could be worn, and then I saw him coming into the room, and he grabbed my arm as if to stop me, but he also pushed me, and I lost my balance and fell, hitting my right knee against the woodwork of the closet door. It hurt terribly at the time, and I lay there. I called for my husband (who was in the living room and knew nothing of the commotion). Unfortunately, you cannot hear from one end of our house to the other, so he did not hear my call. Ben knew that he had done something in his upset that he did NOT mean or really want to do. When he saw me fall, he began again to hit his face with his hands. I heard myself saying, “Ben, it’s OK…it’s OK” (not that he pushed me, but that he needed to calm down). Then, by the Grace of God…I said, “Lay down on your bed!” He looked relieved, and DID lie down. I was able to get up then, and go into the living room, leaving Ben on his bed. A few minutes later, I went back in, and he was standing, facing me as I walked in. I stretched out my arms to hug him, and he opened his arms too, and we hugged. Then, he pinched my shoulders with his fingers, and I quietly said, “Don’t hurt me Ben.” He let go and we continued to hug. He was OK from then on, and never soiled his undergarments again (and never had before). WHO KNOWS what was going on…only God, and He hasn’t revealed it to me even yet. Ben slept well that night (no getting up)…and I applied ice to my knee…knowing that all the company was coming the next day, and I HAD to be able to be “up and going!” I was able to do everything I needed to do but, my leg had multiple bruises, and looked really bad. Three weeks later, it got puffy, and today, six weeks after the incident, two doctor visits and 5 x-rays, it is still puffy, and I’m still using ice on it. That’s SO much better though that what COULD have happened…the possibility of a broken hip, hospitalization, and weeks of therapy to be able to walk again (OR, hitting my head on a 24” wide table insert that was stored in Ben’s closet)!
All this has made us take another look at Ben’s future and our place in it. It has been a sad turn of events because this had never happened before and may never happen again, BUT, if it DID, what would we do, and who could help us, and what would happen to Ben. The police are not well-enough trained about autism at this point to handle a grown autistic man who is in the middle of a meltdown, and they might even take him to jail if he didn’t do exactly what they told him to. Ben probably would not, as he doesn’t understand or perceive all the rules and regulations of society. The police don’t realize that about autism, that they are “out of control” at that particular moment, but will be OK if they are given time and reasonable restraint. It is all SO hard to understand. Ninety-nine percent of the time, Ben is a gentle and good-natured man. But, when something is triggered, that can be really hard, if not impossible to handle. Our next time to go and see Ben and take him out in Conway is in April, and a home visit will be due in July. We are praying and seeking God’s guidance in these endeavors. Was this episode a gentle warning that times have changed for Ben? I’m SO glad I have kept scrapbooks of his visits home through the years, and can look at his happy face, and know that we have done ALL we could to keep him a part of our family, and to let him know that he is loved! We will do all we can to keep that going in his life…as much as his disability allows! God has been SO good to let us have 43 years of joyous times. There have been many sad things in-between visits, but the time at home was “special!” Oh Lord, have mercy on your servant, Ben!