Kirsten Walker is the Senior Specialist Youth Advisor for Scottish Huntington’s Association, who has had the privilege of working with families impacted by HD for 10 years.
“How are you?”…….“How’s things?”…….. “What have you been up to?”
These are all simple phrases we use in our everyday lives and often we don’t even think twice about them. They are greetings and check-ins we use with our family, friends, colleagues, neighbours-Sometimes out of politeness, sometimes to actually start an in-depth conversation with someone. What response someone chooses to give to these questions, very much depends upon the person, but at least the question has been asked and the opportunity provided.
Due to the nature of HD, often the person who is symptomatic becomes the focus of the family. Sadly, this can often result in children and young people’s (and carer’s) needs being inadvertently overlooked. For children and young people living in families impacted by Huntington’s disease there is often so much else occurring within the family: non affected parent has caring responsibilities; mood, mind and movement symptoms of person with HD; appointments; work; school; clubs and activities; housework; to name but a few of the stressors faced in everyday life, that asking a child how they are can often be missed.
I was visiting with a young person last week and he informed me that he was having a hard time. When we chatted further about this it became apparent that for 3 months, no-one within his family had looked at him and said “How was your day”, “How are you?”, “What happened today?”. When he returned from school, he immediately started caring and his family took the opportunity to get on with other tasks. This young man was feeling that his family didn’t care for him. I have no doubt that his family love him and care for him, as he knows deep down, however there was a connection missing with his family. He felt left out, missed, forgotten about, not cared about.
To improve things for our children living in families impacted by HD there is one simple technique we can all adopt: –
“How are you?”
Allow the child time to respond. If they give the answer “fine” (as many young people do) change the question to “what did you do today”. These simple questions reaffirm to children that you love and care for them, are interested in them and provide them with the opportunity to discuss how they are feeling.
As parents, we can often try to protect our children by shielding them from the truth, however openly communicating with children, at an age appropriate level, has been shown to be of benefit to children. “How are you” is one method of open communication.
We may not be able to change the prognosis of HD, however adopting “how are you?” into our daily life, can dramatically change how a young person copes with HD in their family. Therefore to all parents, family members, neighbours, professionals please ask the question. You may not see the benefit of it, but trust me SHAYP staff can see first-hand how these three little words make the biggest impact in a child’s life!
So, to all who have taken the time to red this blog “How are you?”.