Thursday 16 September 2010

Food Sensitivities

I don't profess to know the technical reasons behind them, but I do know that upset stomachs are a part of having Down's Syndrome. My daughter has always had problems either with being constipated for days on end or the complete opposite.

It took her years at a special unit when she was a teenager to find out what lay behind the abnormal workings of her digestive system. I noticed that when she was eating what the school prepared for her, she had the worst effects. During school holidays when I was cooking everything from scratch and avoiding processed food as much as possible, it all calmed down markedly.

The teacher of the unit would not let me supply my daughter with packed lunches (I had a lot of issues with this lady, it was not a happy time for my daughter or myself) yet seemed to think feeding the teenagers in her care baked beans and the like for four days a weeks was OK. I could go on about this, but that's not the point of this post!

During school holidays I tried excluding various foodstuffs from my daughter's diet as well as reading up on the effects of certain ingredients. I managed to narrow the causes down to a) chocolate - or anything with too much processed sugar in, and b) aspartame, which is a sweetener often found in sugar-free yoghurts, drinks etc. The effects of the aspartame are quite spectacular - within an hour of eating one of these yoghurts, my daughter would have to make the mad dash to the loo. This was not much fun for either of us.....

Since leaving this unit (hooray!) and having her meals managed properly, my daughter rarely has these upsets, which is a great relief. Meals are generally home-cooked from fresh ingredients and packed lunches made from 'safe' food. We both know when a certain food has the possibility to cause trouble and she is very sensible in avoiding them, although occasionally (birthday cake, special meals out, etc.) sometimes it's worth the consequences - my daughter is able to accept the risk.

So if your child is having unexplained stomach upsets, check first they are not eating something that may be triggering the problem. Try a few days of an exclusion diet and see if this alleviates it. Obviously, if the problem persists then you should check with your doctor that there is not some other underlying condition, but it is worth making a few changes in your food preparation if it means a life free of 'runny poo'!

Thursday 9 September 2010

Forgive Yourself!

This week schools were back in session, as were colleges...so I thought! I did something terrible on Tuesday - over the last couple of weeks I was very conscientious and contacted my daughter's social worker to inform her that we'd need the taxi service back to normal this week; I even contacted the taxi company and made sure they knew about the times and pick up/drop off points. We got up in time, my daughter got herself ready and was all keyed up to get back to work and went off happily in her taxi.

Half an hour later, I got a phone call at work from the college to say that whilst my daughter had arrived safely, her course didn't actually start until a fortnight's time. Whoops! They said the dates were in a letter, which they probably were, but I must have missed that one and just assumed that their term started the same as ours - which I think it does for full-time courses.

So I had to ring the taxi firm who were kind enough to send someone straight away to bring her back - lovely people, thank you! She was fine, completely unphased as ever, while I was mortified.

However, I have learned over the years that to err is human and there is no point in beating yourself up over it. You have to accept the fact that you have a great amount of things to deal with and if something slips through the net, it is just one of those things. As long as it all ended happily, the best thing is to put it down to experience and then move on. In the past I would have been mentally kicking myself for days, but that is just wasted energy which could be utilised far better elsewhere.

On the plus side, now I have made my apologies and (hopefully) sorted out the correct dates, we had a lovely day at home together yesterday and the promise of the same again next week, thereby ekeing out the summer holidays just a little bit longer!

Sunday 5 September 2010

Back to School...

Not just for the children but for me as well tomorrow - up bright and early and back into the old routine with a new little boy.

Getting back into the swing of things will be hard enough for me, an adult (reputedly!), but even tougher for children with Down's who have been enjoying the home routine for six glorious weeks. I think what my daughter found hardest of all was the getting ready first thing in the morning. It was particularly hard when she was old enough to go to junior school and along came the complications of school shirts and ties to get to grips with. Fine motor skills are a problem at the best of times without these added fiddly tasks.

My advice here is to have a little word with the school and see if it is OK for your child to wear polo shirts rather than fully buttoned cotton shirts, thus reducing the buttons to one or two. Also, if a tie is necessary, either show your child how to take the tie still tied over the head at the end of the day, ready to be put on and tightened the next morning, or try and buy/make one on elastic. It is just not fair to expect your child to be able to manage school uniform suddenly and to be dressed independently on time. With tuition and repetition, your child may well eventually be able to button a shirt and tie a tie, but it is not going to happen overnight and expecting them to do it can cause frustration and misery all round. Bear in mind that it is not only the getting dressed in the morning but the changing for PE, so if you can make the process as easy as possible, the better for your child. By the same token, try and get trousers or skirts that are easily fastened, no complicated belts or buckles.

In general, I have found that trying to chivvy any child with Down's into hurrying to get ready just doesn't work. All you succeed in doing is getting the child flustered and they will either get confused or, more likely, go even slower. Even now, with my daughter at 22 years old, I do try and give her plenty of warning if we have an early start to the day and also get her out of bed in plenty of time. This way she can get herself ready at her own pace, which is far less stressful. Once it is a learned routine, then all you have to do is be the one to get them up and out of bed.

Talking of which, I know that younger children with Down's often have restless nights with bouts of walking about the house in the dead of night. I used to have to leave folded duvets in strategic places so that my daughter would have somewhere to lay down and sleep again if she was on her travels and I didn't wake. She grew out of this by about 8 years old (thank goodness!). I have come across a couple of cases where the parents of children who have these disturbed nights then leave the child to sleep in in the morning. All well and good during the school holidays, but you are doing your child no favours during term time. For a start, you are not establishing a structured sleep pattern - I know from personal experience that if I sleep late in the morning, I am not ready to go to bed early that night by any means. Far better to wake the child at the correct time for school and then put them to bed at the regular time - hopefully they will be tired enough to then sleep through the night.

Also, by bringing your child in to school late (or not at all!) they are missing an integral part of the school day. The first twenty minutes or so are spent getting belongings put on pegs and in drawers, finding out what the coming day holds and taking part in morning tasks before the register. If your child is whizzed in half an hour late, with mum in a panic and putting the coat on the peg and the lunchbox away for the child whilst pushing them in to an activity that is already half way through, how are you teaching your child to cope with school? They will be confused as to what on earth is going on, they will be flustered, you have done jobs for them that they should be doing independently, and you will also be disrupting the learning of some 29 other children who did manage to arrive on time. Do I sound harsh? It's just that I have seen it from the side of the LSA who then has to try and salvage something from the wreckage after mum has left!

It does mean a bit of thought and extra work to begin with, but if the foundations are laid early, then there is no reason why your child should not be dressed and ready to go to school along with everyone else, relaxed and happy. Good luck for tomorrow!