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Balancing Time In a Challenging Environment


The decision to have children is always a big one, whether that is one child or more. There will always be more questions than answers, which school, what holiday, what friends, when should I let them use technology and so on... The dynamics change once you have a child with additional medical/support needs, add another child or more who does not have have any additional needs and your entire world changes.


We know first hand that it easy to get consumed in supporting the child who needs those additional needs to the point where the siblings are not getting quite the same attention. I remember not long after we received Luis' diagnosis we only had his older sister Eva at the time, but it was suggested by someone who was close to us, to put Luis in a care home and just live our lives.

For us personally this would never have been an option and it was a shock for us to be told this by that person. I know that everyone has a choice to make and maybe circumstances may not give someone any choice, so I am not here judge but it was not for us. There is a balancing act that needs to be done well when planning time spent with them, one we have had to learn with time.


Luis and his siblings on the beach

At home there is a familiar setting and we are able to accommodate needs with more ease that being outside. Our old archenemy the TV still works wonders, I usually play video games with Eva my oldest daughter a few evenings out of the week once Luis and Antonio are in bed. We try to take her between Kristina and myself once a month to cinema to have that time without any of her brothers, or maybe to get something to eat and we can discuss anything that is on her mind.

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ANTONIO

Antonio. They say the last grow really quickly, he is no different. He didn't know what he was walking into, but he does now. He really likes cars and is currently obsessed with Fiat 500s as Kristina has one so naturally he also has a couple in the house. We make time to drive those cars around and read books with him, and of course he also has his favourite programs on TV so we give him his space for it.


Planning

Luis is Luis. He pretty much needs our attention from the moment he is awake so it is always all systems go around him. It is very different when it comes to planning outings. If your child needs a wheelchair is there access, if they suffer from epilepsy is the environment suitable and so forth, I know that was only a couple examples and there are so many other needs to be catered for whether visible or not.


What is easy to forget is the needs of everyone else, what can they enjoy, what will entertain them, will they have enjoyable memories of the day or are they just putting in another accommodating shift. The last thing any parent wants is a child growing up regretting them or resenting their sibling because of mismanaged time amongst them. As I mentioned earlier individual and family circumstances differ, also mental and physical resilience to challenges so this is by no means an easy task for any of us.


I have spoken to many other parents who have encountered very similar circumstances and we all agree there is no one size fits all solution, and no matter how good you try to plan be prepared something can and almost always pop up.

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