What makes us who we are – what determines our essence?

With my son, I believe his essence is rooted in his genetic uniqueness. I genuinely believe that having an extra X chromosome gives him some real challenges, but he continually faces these challenges with remarkable resilience. He learned to recognise the impact of XXY and to use the attributes associated with the variance to his benefit.

Through the years, as I lived with him, watched him grow, saw his courage, and learned to value him for who he is, I realised that I was the one who gained the most from our relationship.

For many years, I tried to make him like everyone else, tried to get him to do what others were doing, act like others, and speak like others. I was often impatient with him, at times even cruel when, in anger, I said hurtful things. But, in the end, I learned from him to be a better person.

I also learned these things about living with him.

He does not process verbal information quickly. This does not mean that he has less intelligence. It means that he is more in tune with the nonverbal gestures surrounding a conversation. He becomes focused on the messages he receives through our eyes, how our mouths look, the tone of our voice, how we use our hands, and other gestures. He responds to this information, and quite often, it is totally different from what our words are saying. This is often confusing for him. He knows our feelings before we are ready to admit that they are our feelings. His intuitiveness puts us in a strange place. We can deny that we are upset, hurt, angry, happy, relieved – we can deny our feelings – but he knows what they are even if we refuse to acknowledge them. His responses are based upon what he sees within us, not the words we use. He senses the emotion behind our words and responds to what we communicate with our tone of voice, the focus of our eyes, the set of our mouths, and the placement or movement of our hands. It is not the words he hears to which he responds; it is the totality of our presentation that determines his response.

What have I learned from this realisation?

(Please note that I use the word try because sometimes I am not successful in putting what I learned into action, but at least now I know when I am screwing up.)

I try to be honest in my communication with him. If he picks up my underlying feelings, then I no longer deny my feelings even when I really do not want him to know.

I finally realised that the greatest injustice I did as a parent was to make him question the reality of what he perceived.

I try to give him time to process what is being said – slow the pace of conversation and not fill in the void created by the silence. That is a challenge for me because I naturally want to talk, solve problems, and give directions, but I have learned that to have good communication with him, I must give him the time to process and respond at his pace, not mine. I try to refrain from a quick succession of questions – he appears to respond more thoroughly if he can focus on one thing at a time. When faced with an onslaught of questions, he shuts down, withdraws, and becomes quiet. When he was young, I would finish sentences for him or give answers before he had time to frame his questions completely. I finally learned that was detrimental to him and to me because I never really learned what he was saying or feeling if I jumped the gun and gave responses too quickly.

He has high anxiety, although most people would not suspect it with his easygoing style. I think this anxiety comes from experiences of misinterpreting remarks and making responses that “did not fit” in with the conversation. He masks this anxiety through smiling, laughing, or making jokes. These are tension releasers for him. He will sit in a crowd and seldom interact verbally if he is not completely comfortable in his surroundings.

If he knows he has made a wrong comment (and he can tell by watching people’s faces), he will try to cover his mistake with a joke or laugh. I try to help him by answering his questions about conversations or about what is said. Sometimes it is like he is a non-English speaker and I am his translator. He knows the words but sometimes misinterprets the context in which the words are used.

I do not believe he sees how successful he is as a person or professional. When he looks at others, he sees their strengths and uniqueness. He does not place artificial expectations on them. But he places high expectations on himself, which appears to contribute to great frustration for him. This frustration often leads to anger. Although he is very accepting of others and their frailties, he expects perfection from himself. When he fails to achieve the mark he set for himself, he becomes frustrated and generalizes that he is a total failure. Once he takes time to reflect on the situation, he usually realizes that he did a good job at whatever he was attempting. But once he starts down this spiral staircase of feeling bad about himself, he usually cannot begin to look up until he is at the bottom.

He needs verbal affirmation from others that he is doing what is expected of him. He wants to be told specifically what people want because he wants to please them. This tendency can also be a pitfall if he allows people to take advantage of his good nature. If they continually do so, he suppresses hurt feelings until these feelings erupt through anger, frustration, or throwing things. He does not express these feelings to the person whose behaviour triggers these responses in him. Instead, he expresses these feelings when he is alone. I try to listen when he talks about what is going on with relationships with others without telling him what he should do about it. I find that he devises solutions if he has a chance to talk things through.

Finally, he has great capacity for building support systems around him. A good example was his college graduation party. To me, a person is successful when he has good friends. The people at that party were from all walks of life yet they came together for one evening, enjoyed each other’s company, while demonstrating their caring for him. When you see him in that light, then other things pale in comparison.

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