I am only using my observations, my personal thoughts, not claiming that what I feel happened is what caused Danny to begin to fall apart himself. I certainly don’t know it all, and have never claimed to. What I’d like to explain is that with any human being, disabled or not, when consistency and caring stops and frustration and anger sets in, how would anyone react? I myself would probably begin to feel angry, confused and frustrated, but of course I could express these emotions by telling others how I feel, asking for help, or just plain yelling at everyone to get it out, not that I think yelling is a good thing, but we all know we’ve done it!
Danny could not express how he was feeling verbally about what was happening in his home with the staff supporting him, but what he could do was show us in his way how it was affecting him emotionally. What a rollercoaster ride for him that must have been.
After months off of Zyprexa he began to seem more and more agitated, sad and was starting again to curl up and not want to do anything. When something that he had previously enjoyed doing was offered, his reaction was “No please”. Now sometimes this would be his immediate reaction and after a few minutes he was ready to go, but during this period of time he meant it!
What was interesting and frightening during this time was that Danny began to lash out at people, whereas previously he would only try to hurt himself. He began throwing objects, punching at staff, refused to eat, even his favourite foods.
He would have periods of time where he would have, and I’ll use his mother’s words as they describe it best, “ Out of it states” where he would be “stuck” in one position with his eyes glazed over as if he was trying to figure something out deep inside, blocking out everything and everyone around him.
I’ll go back a bit to explain why I found his lashing out at others interesting. As long as I had known Danny he had never tried to hurt anyone, only himself. The question going through my mind at this time was “Why, after all these years is he starting to try and hit people, and how did he learn to do this?” I had brought this up to the others involved in Danny’s care, could he be mimicking something he had seen on TV, or was it something more serious such as him doing what was done to him. I’m not claiming abuse as I had not witnessed it, but of course it must be something to consider. He was obviously going through a type of emotional abuse; could he also be going through physical?
After some discussion with his circle of support we thought that after all Danny had gone through maybe he needed some time away, some time to relax at a camp he had been going to for years with staff that he knew there.
He had always very much enjoyed camp and maybe he needed some time away from us. His support circle still hadn’t been increased and his mom was taking him out for long car rides many times a week to help us and spend time with her son.
The Sunday before he was to leave for camp there were two staff that had previously worked with Danny, but had never been through his morning routine. It was explained in detail how it was done, as Danny needs his routine to be consistent. As hard as they had tried, Danny was not responding to them so they called and asked if I could come in and help them. I arrived and Danny was still in bed, laying in his urine and seemed very upset. I asked one of the staff to stand outside the door in the case that I might need assistance and began the morning routine again, from the beginning hoping the familiarity of me doing it would calm him down. He did indeed get to the washroom and began to get ready for his shower; things seemed to be back on track.
He was still a bit agitated so I was singing with him our song, the one that usually calmed him, “Blackbird” by the Beatles, he was singing with me when he suddenly tried to head butt me, since I’m a bit taller than him he caught me in the jaw. The staff outside the door came in immediately when I asked for assistance, afraid he would begin to bang his head, Danny does not have his helmet on at this time so it’s a concern”. When the second staff came in Danny went to punch him, as I tried to block the punch Danny grabbed me by the hair pulled me down a bit so that the next head butt would actually land on my head. As surprised as I was, Danny had never done this to me before, we stayed calm, talking softly to him and he began to calm having his shower without further incident. We sat for awhile after he was done and talked about camp, how much fun he would have and how he would be seeing his old friends. I’m hoping that his mom can fill in how he was for the rest of the day since he spent it with her.
The morning he was to leave for camp, he and I talked about what we should pack as he was getting up for his shower, I had always found that by discussing the plans for the day, what the weather was like outside, what he’d like for breakfast would help him start the day in a good mood, being aware of what was to come.
Unfortunately this morning again he seemed upset, his eyes open very wide as if he was frightened by something. I kept talking calmly about everything and anything, sometimes to him, sometimes to myself, just letting him know in my way that I was there and everything was fine.
He got out of bed that morning and began to bang his head, as I went to block him he head butt again, something was definitely wrong. I wished and prayed that he could tell me, but knew he was trying to tell me something in his way. What was it? Something was upsetting him to the point that he was lashing out and I just couldn’t figure out what it was. His mother disagrees with me here, but I blamed myself. Danny and I had always had a connection where I could usually figure out what was bothering him; this time as much as I back tracked I couldn’t figure it out. Was he angry at me for missing something?
He finished his morning routine, had some breakfast but was still agitated. I helped him to back his bag for camp; actually I backed it but included him by showing him what I was packing and asking what he thought. He sat rocking and repeating “Yes please” to every item I showed him.
We drove to camp, showing him and talking about how beautiful it was outside, asking him questions to keep him focused, singing together, it seemed everything would be fine.
I’m going to have his mom write what happened next as she received the phone call that he could not stay at the camp, from then until now he has been at home with her.
As can be imagined, she doesn’t have much time right now to sit and write down what her family has been going through having Danny at home so I will leave a blank section for her to fill in when she can and move on to what we feel would the best living situation for Danny, for his future, what his family and I believe he would want and need to lead a quality of life that would include him feeling safe, secure and give him the opportunity to explore his interests without the binds of medical restraints.
Since there is so much to tell and I hope that I’m telling it in a way that is understandable to everyone who reads this, I will continue our story soon, as I’m hoping I can give some understanding first to why it’s felt that Danny needs a certain living environment, surrounded by love, support, consistency and compassion.
An added note, Danny is NOT to blame for his aggressions, I have never blamed him as what comes from him is not a want to hurt anyone but a cry for help.