Eleanor and Andrew

My son, Andrew was my greatest teacher. People, in general, tend to think, “level of functioning”. He didn’t talk, he didn’t read. They would focus on all the things he didn’t do. Consequently, he didn’t get listened to, even though he had a lot to say. All the people who knew Andrew were very aware of that. He was so clear and he always made such a huge effort. He was a very communicative person. So the people who cared to listen, got a lot out of that. Many unfortunately didn’t, many in important positions, which is really scary.  

It became more clear to me in the last years of his life. So I listened more deeply and heard and understood much more. Very often people say what they don’t mean. He had limited words but was very direct and I loved that about him. He could be so clear and persistent in the points he wanted to express.   

In the last few months of his life, when he had many people coming into his home, physio, occupational therapist, dietician, he responded and communicated with each person differently, according to how they listened to him or not. One of them came in, looked at Andrew, stood at the door, kept his distance, like can I catch this from him. That was his non- approach and attitude. The guy talked to the supporter or to me, ignoring Andrew…..And this was in Andrew’s home!  

Then there was another one who had to check his swallowing. She was right there with him at the table, doing all the tests needed, but in such a lovely personable manner. And Andrew enjoyed it. He enjoyed the conversation and did everything she asked of him because he could feel her sincerity and interest.  

It was helpful for Andrew to be in a comfortable environment with people he knew, like a really excellent supporter and mom. So there was a comfort level for him to be able to express himself and make decisions. We would give him encouragement and check in with him directly, checking what he meant if it was not clear to us. Any person who had a good rapport with Andrew, would do the same. If the person didn’t quite know how, he would have our example to follow. This would help.  

What was most important to Andrew was to have people listen. I think about when he was in the hospital and they didn’t know what he was dying from. So every time staff came in with medication, which was often, I would ask , on Andrew’s behalf, what the pills were for. He was used to taking pills, his whole life, for seizures, acid reflux and so on. And they would answer. I was totally confused because they were for something different each time. I continued encouraging him to take them, but finally had to respect what he was telling me. Andrew had made the decision to refuse to take any more. It was definitely “uh, uh”. He shook his head and turned away, showing by his body language that he had had enough. I sadly said, you know what Andrew, you know better than I, that all these pills are not helping you. This was an important decision that he had made.  

It would have been nice if there were all these devices that might have helped with his communication, like the phone or computer speaking for him when he knew what he wanted to say, and it wasn’t clear to us. But we hadn’t figured that out, certainly not for a lack of trying. But it surprised me all the time how he stepped up to the plate and got better and better, despite the limitations in the number of words he had at his disposal. He communicated with sounds, body language, he did it with taking the person to show them physically. If they weren’t listening, he would sometimes touch their chin and turn their head towards him and he would look them straight in the eye to say, “listen, this is what I mean, what is the problem here?”  

I think that he could see that when he used these methods and people finally got what he meant, he was thrilled. And the other person, in seeing this, would enter more deeply into continuing the conversation, because they thought okay, this is working. We are really communicating. It built up his confidence and this grew as people listened to him. The people who didn’t listen to him, he just ignored. But it was obvious that these blocks in communication hurt him deeply. He made this obvious by how he would get louder and louder. His whole body was telling us.  

There were conscious strategies to help others see Andrew as the decision maker, but unfortunately, they didn’t always work because people had their own ideas, no matter what we tried. With some people, you would try to have them understand but it just wasn’t getting through. It just shows the strength of the preconceptions that are already embedded in people’s minds, hearts and attitudes.  

Out in the community we would keep reaffirming, for example at the bank, we had this experience with a bank staff who didn’t talk directly to Andrew. She said things like, make him come to the machine and insert his card. I replied that I don’t MAKE him do anything and by the way he is the customer, this isn’t my bank. This is Andrew’s bank, so please talk to him. We just kept on repeating this, because unfortunately this was one person (in an authoritative position), to whom we weren’t getting through. Our broken record method was getting us nowhere. In the end we went to another branch and the transaction went smoothly and beautifully. This shows that it is not a systematic or policy issue. It’s personal and totally depends on personal experience and what was learned or not along the way. We learned that we had to try another way. It was not easier but the results and outcomes were better.  

What made the biggest difference to Andrew’s capacity being recognized was being respected as a person. Being treated like anyone else. Being included in the conversation like anyone else. Andrew had this very deep sense of what people expected of him. So, if not much was expected, not much was given. If a lot was expected, he felt it and always stepped up to the plate. He had this intuitive knowledge and an amazing sense of people.  

I would like to see all people who are not listened to or not understood due to their speech limitations, be respected and heard like they should be, because they are people just like anyone else. This cannot be overlooked.  

We need more stories, more accounts. We already have many spanning 30 years or more. These are absolutely true stories. Hearing them, I based my approach to Andrew on them and I came to understand how powerful they were and what a huge difference they made in Andrew’s life.  

People in power need to understand this. It is of utmost importance that they understand that capacity needs to be recognized and presumed from the get-go.  

I, myself, didn’t believe that Andrew could live in his own home….never in a million years. I’d always say to myself in the early years, “that’s fine for this person or that because they can do this or that, but it won’t work for my son. Well, it turned out that it was possible. He had his own place, living interdependently. We thought he needed 24/7 support. It turned out that he didn’t. He actually told us very clearly that he needed breaks. He would kick mom out of his place when he had had enough of people around him. He needed time on his own and his own space, just like anyone else. He certainly showed that he was king of his own castle. He couldn’t tell me at the beginning, “mom, I want to move out into my own place.” We owed it to him to give it a try. And when we did, he told us so very clearly, this is what I like. This is what I want.