![]() ![]() The family can be full of love and compassion and there would still be a negative impact due to JHD because that is how tough the condition is to handle. Nobody is to blame for what is happening. It’s not the parents fault, it’s not the child with JHD’s fault, and it’s not the sibling’s fault. ![]() This can happen and it’s not anybody’s fault. This can lead to feelings of regret, guilt, anger, frustration and sadness over the way the family has become. Some children may even wish they had a condition of their own so they would get some attention, or that their sibling was not around. It can take time for children to understand why a parent can’t focus on them so much, but has to focus on their brother or sister instead. As the quote above says, this can all lead to a big change in the family dynamics and the relationships the family members have with each other. It can lead to resentment from the parent(s) that they, no matter how hard they try cannot find the time to be there for their children, that they have to focus more on one child than the others. It can lead to resentment from everybody, resentment that one child gets all the attention, that one child ruins all the plans, that one child has to be accommodated all the time. This all leads to siblings of the child with a condition feeling marginalised and ‘invisible’. Our relationships with each other.” – Mother of special needs child But one of the things that we don’t really acknowledge is the sacrificed of our family dynamic. Whether it’s a family vacation because the medical bills are too much, or a trip to an amusement park because Haley can’t do the rides, or not participating in an after school activity because Haley has a Dr appointment. It’s just that no matter how much effort and attention I give them Haley, by virtue of her diagnosis, needs more. “It’s not that I don’t actually see my other children. I am doing this effectively as a single parent.” MichelleĪs the pressure to care for the child with JHD increases the time that parent has to give to their other children almost disappears, a parent may well want to spend time with all their children but more and more frequently that time can be interrupted by the need for that parent to spend time with the child who needs care. It is so challenging trying to juggle everything at once, especially with my husband having Huntington’s disease too. “I try to give as much time and attention to all my children, but Julie’s needs take over at times and I have to attend to them. Even with two parents caring for a child with JHD is highly challenging and some excellent teamwork is required to ensure time is given to the rest of the family and not just the child needing care. What makes JHD worse to handle is that HD is hereditary, so it’s likely one of the parents already has HD or has passed away from HD, leaving one parent to provide everything their children need and care for a child with JHD. It is very demanding and usually this need for care falls on the parent(s). Those that have experienced JHD will know that it is a very challenging condition, like adult onset HD there is a need for 24-hour care, with extra issues such as seizures thrown in too. But, feeling invisible because people don’t have time for you can be no fun at all. ![]() Many children would probably enjoy the idea of being able to become invisible, it is one of the most common super powers kids think of if asked what power they would like, along with flying of course. What’s happening to make children in families with JHD feel invisible? So, here we will explore the issue of ‘invisible siblings’ within JHD families. The blog was sent to me by a mother in a family with JHD, she thought it was very relevant to her situation and the situation that many JHD families find themselves in. She wrote very honestly and emotionally about the fact she struggles to spend time with her other child and as a result that child becomes the ‘invisible sibling’. This article is very much inspired by a blog I read recently from a mother with a child who has special needs and another child which does not. ![]() HDYO are mai multe informații despre HD disponibile pentru tineri, părinți și profesioniști pe siteul nostru: ![]()
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