Never Assume....

I think lately I have been guilty of assuming that my daughter is quite happy occupying herself whilst I am either doing the housework, working, etc. when in actual fact, I suspect she might have been feeling very bored and undervalued.  It is very easy when someone is unable to communicate their feelings clearly to think that everything is fine with them,  just because they don't say it isn't.  It's not until things start to go badly awry that you wake up and realise that perhaps there have been signs that you have not noticed or have chosen to ignore.

My daughter is not one of those loud, confident and out-going people with Down's Symdrome that you see - she is very quiet, quite shy and due to her difficulty verbalising, quite lacking in confidence.  If something is bothering her, she will not (cannot) say anything - on occasion I will find a piece of paper with one of her 'essays' on it and notice she has written down a complaint about her life.  When this happens, I try to address the problem and sort it out as best I can.  But that is not always the case.

We have noticed of late that she has become virtually silent at home, answering questions in monosyllables and rarely starting a conversation.  She has also become a bit peculiar in her behaviour - resisting me when I try to help her with personal care such as brushing her hair or straightening a jacket for instance; continuing to walk when I am asking her to stop; other little quirks and tics appearing.  I have been worried for quite some time and did wonder if I have been doing enough to keep her mind active and her self-esteem high.  Since she finished college last year, she has three days a week where she goes to a placement, two at an art studio and one at a social group. One day a week she has a careworker take her out for the morning while I am at work - we have had a few hiccups with this lately, plus the routine has become the same every week which must be dull but my daughter has not asked to go anywhere different. Again, have we assumed that because she hasn't said anything that she doesn't want to do anything different?

When she is home, my daughter spends her time either drawing, writing her little stories or daily diaries, and watching tv - a lot of tv.  I charge around trying to get everything done singlehandedly around the house and garden, as well as holding down a morning job plus working from home during the afternoons and evenings.  As I am so busy, I tend to take over everything in order to get it all done quickly - should I be delegating some jobs to my daughter and biting my tongue when it takes her five times longer to do something than I would?  Yes, I think I should.  I have been making more of an effort to include her in daily activities and it pays dividends - this weekend she has been chattier than for a very long time, and far more willing to join in.

I am embarrassed to think that through some misguided sense of caring I have actually been a major contributing factor in making my daughter unhappy. We all need to feel valued and have a purpose in life - having your every need catered for and being able to sit around all day is fine for a short while, but in the long run must be soul-destroying.

So we will continue to get her up and about, perhaps cooking, using the vacuum cleaner, taking a bit more responsibility, and hopefully be able to repair the effects of the past few months. 

Guilt

Guilt - we all feel it, we would not be human if we didn't. However, it is a very negative and counter-productive emotion.

There cannot be any one of us parents of a child with Down's Syndrome who does not wonder if we caused our child's condition by something we did or didn't do before they were born. It is highly unlikely that this is the case - sometimes things just happen and beating yourself up after the event will get you nowhere. You may well have unthinking relatives coming out with the immortal phrase 'well, we never had anything like that in our family' - again, it really doesn't work that way.

Then there is the guilt along the way - did we make the right decision regarding this school or that school, this treatment or that treatment. I read something a few years back that puts this into perspective - you did what you thought was right and for the best at the time. Looking back with what you know now is pointless - can you change what you did? Will feeling guilty about it make any difference to the outcome? Be kind to yourself, you are doing the best you can under the circumstances.

There was one decision I made regarding my daughter's education that I would change in a heartbeat if I could - she ended up spending four years in her teens in a placement that really wasn't right for her. At the time, I was under the impression this was the only place available for her to attend at that point in her life - I'm still not sure what the alternative could have been if I am totally honest. However, she made it through and went on to college where she blossomed and still managed to become a well-adjusted young lady. Nothing I can do now can change those four years and making myself miserable about it doesn't help.

Guilt - don't do it, you have enough to deal with already!