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Should it be such hard work? |
In the last 2 1/2 years since our little girls SMA2 diagnosis, we knew it was going to be a huge life change but I secretly thought that by now - she has just started fulltime mainstream school - life would be settling down. However, we just consantly feel at her beck and call and her constant cries for 'MUM' either becasue she's dropped something, has slipped or needs the loo, are wearing me down. She also gets so cross and frustrated and our punishments and treat withdrawing techniques have no affect.
My husband and I also worry about the affect on our 7 year old daughter who must surely bear the brunt of our lack of patience. We always seem at the end of our tether, so even when Holly asks a simple thing, we can be very short with her.
These years in your children's lives are meant to be the ones to treasure but we just feel so guilty that we don't seem to be able to create a family life that is worth treasuring or remembering.
Does anyone know what we mean? Can anyone offer any advice on how they got through this? Louise |
| Posted: Sat Jan 5, 2008 3:00 am |
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Re: Should it be such hard work? |
Hi Louise,
Sorry to read about the problems you are facing - it is a hard time and one we are facing in the near future!
Our little girl (also SMA Type II) is due to start nursery in September - she has just turned 3 and constantly needs our attention for all the things you have mentioned! It is hard on the family and especially for your elder daughter (we have a 6 yr old) who probably feels left out or feels you don't have the time for her. What we found helped was "sister" weekends - we let the girls choose what they want to do for the whole day for example painting, sticking or going to the park and we let them take turns in deciding what is going to happen throughout the day, even to help decide what we were having for dinner! - this gives both girls the attention they need but also gave our SMA daughter the time she needed with both us parents and her elder sister - she felt more involved and more in control. Our eldest enjoyed the responsiblity of making the decisions and being one of the "adults" who decides what we are going to do.
The girls both had our attention and through this our little one has learned that she is not the only one who requires attention and that it was equal. Obviously if she falls down or has dropped something we will help her but we found on the "sister" days she liked to be more independent and tried to do as much as she possible could herself or she would ask her sister to help!
I hope things calm down for you but don't feel you are alone in this :) |
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Re: Re: Should it be such hard work? |
| Thank you for your reply - it's good to know we're not the only ones living this life. Family and friends try to empathise with our situation but they really have no idea - how can you unless you're in the same boat? We will give your system a go - happy times ahead eh? Many thanks, Louise. |
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| Wed Jan 23, 2008 10:21 pm |
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Re: Re: Re: Should it be such hard work? |
It is hard when other people try and give advice for something they have no experience of - sometimes it can be good advice other times not so good. Our friends and family are struggling to understand what the future could hold - we try to take each day as it comes - your bound to have good days as well as bad and sometimes you will have really crappy days when all you feel like doing is staying in bed!
Stay positive - your little one is obviously going to be fustrated that she is not able to do the same things as other children her age and what us parents need to think is how would we cope....I am 99% sure my first point of call would be my mum! |
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| Wed Jan 23, 2008 11:13 pm |
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