One thing I have learned along the way both as a parent and as an LSA to children with Downs, you must always be prepared to make yourself look a right prat for the good of the cause. Take today...I'm working with a new little boy and it is taking time to get him into the groove as it were. Year 1 is difficult enough as it is, but for some children it is an almost insurmountable mountain and they need a lot of effort from those around them to help them reach their daily goals.
Today that effort involved marching around outside singing 'Head, Shoulders, Knees & Toes' at the top of my voice whilst smacking the relevant body parts with a tambourine like some crazed Salvation Army reject. But it worked - little boy was engaged, joined in, learned the names of body parts, had loads of fun and signed for more. Result!
Thursday, 7 October 2010
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'!
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!
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!
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!
Tuesday, 17 August 2010
Summer Holidays
You'll have to excuse me for not contributing to this blog much lately - it's the school summer holidays and as such I'm catching up on all the outstanding jobs at home before I get back to work in September.
My daughter has been enjoying the holidays immensely. For the first time ever, she has two activities which continue throughout the year without a summer break. So although she has no college and we have dispensed with the care worker's visits for the duration of the summer, she is still attending Bell's Piece and the theatre group. This has actually worked out extremely well - I am always very conscious that while I may be quite happy doing household tasks and painting pictures every afternoon, she is possibly very bored. As she has never shown much interest in sports, play schemes were never much of an option, and another local summer respite group is always fully booked - last time I applied we were offered two days...of sports!
I am very lucky in that she can generally occupy herself pretty well- she never tires of listening to her CD's, drawing pictures and watching the daily afternoon dvd - but this year I feel she is really getting the most out of the summer - two days a week out of the house with friends of her own age, as well as our little outings and activities. I also get a couple of days to myself - a complete novelty & very much appreciated!
I'm also very glad that we have reached the stage in my daughter's life where we don't have to keep up with the school work during the holidays for fear that she will forget everything she learnt over the last term. Six weeks is a very long time for any child, but for a child with Down's it can be a lifetime! When they are in the initial stages of learning to read and write and coming to grips with numeracy, this long summer break can set them back by months unless a little work is done at home. I have been asked in the past by the parents of the children I work with how they can keep up the work and if I could give them any worksheets etc. to take home. I tend to advise them to keep it light - no child is going to appreciate their parents suddenly turning into a teacher when everyone else is out in the sunshine. But you can keep up the schoolwork unobtrusively - keep a holiday diary, getting your child to write a few words in it at the end of each day to tell what they have been doing. Tell them it is to show at school or to grandma etc. and allow them to draw pictures to illustrate it as well ( it's all pencil control!) Have magnetic letters on the fridge or the side of the bath and make a game out of leaving messages to each other. Write shopping lists together - give them the job of holding it round the supermarket and reading the items and trying to find them. Count the apples, oranges, potatoes you buy; get them to set the table, counting how many of each item them will need for the place settings; sing together, incorporating lots of stretchy mouth movements, encourage flamboyant licking of the lips after an icecream - terrific for exercising the tongue. Read stories and comics together - get them to read to you for a change, as much as they are able. It's not hard - you'll be surprised at how easily day to day activities can include valuable back-up work which will pay off dividends when your child goes back to school in September and can pick up exactly where they left off. Above all, have fun and get out and about and give your child lots of new experiences that they will learn and benefit from - all mental stimulation is of value.
Interestingly, my daughter remembers very little of any history and geography taught to her at school - but having been to Rome, Pompeii, Athens & Boston over the past years, she remembers every detail of these trips and just about everything she learned while she was there. It is because she has seen it and experienced it rather than had to struggle to understand a teacher and something in a book which just isn't 'real'.
My daughter has been enjoying the holidays immensely. For the first time ever, she has two activities which continue throughout the year without a summer break. So although she has no college and we have dispensed with the care worker's visits for the duration of the summer, she is still attending Bell's Piece and the theatre group. This has actually worked out extremely well - I am always very conscious that while I may be quite happy doing household tasks and painting pictures every afternoon, she is possibly very bored. As she has never shown much interest in sports, play schemes were never much of an option, and another local summer respite group is always fully booked - last time I applied we were offered two days...of sports!
I am very lucky in that she can generally occupy herself pretty well- she never tires of listening to her CD's, drawing pictures and watching the daily afternoon dvd - but this year I feel she is really getting the most out of the summer - two days a week out of the house with friends of her own age, as well as our little outings and activities. I also get a couple of days to myself - a complete novelty & very much appreciated!
I'm also very glad that we have reached the stage in my daughter's life where we don't have to keep up with the school work during the holidays for fear that she will forget everything she learnt over the last term. Six weeks is a very long time for any child, but for a child with Down's it can be a lifetime! When they are in the initial stages of learning to read and write and coming to grips with numeracy, this long summer break can set them back by months unless a little work is done at home. I have been asked in the past by the parents of the children I work with how they can keep up the work and if I could give them any worksheets etc. to take home. I tend to advise them to keep it light - no child is going to appreciate their parents suddenly turning into a teacher when everyone else is out in the sunshine. But you can keep up the schoolwork unobtrusively - keep a holiday diary, getting your child to write a few words in it at the end of each day to tell what they have been doing. Tell them it is to show at school or to grandma etc. and allow them to draw pictures to illustrate it as well ( it's all pencil control!) Have magnetic letters on the fridge or the side of the bath and make a game out of leaving messages to each other. Write shopping lists together - give them the job of holding it round the supermarket and reading the items and trying to find them. Count the apples, oranges, potatoes you buy; get them to set the table, counting how many of each item them will need for the place settings; sing together, incorporating lots of stretchy mouth movements, encourage flamboyant licking of the lips after an icecream - terrific for exercising the tongue. Read stories and comics together - get them to read to you for a change, as much as they are able. It's not hard - you'll be surprised at how easily day to day activities can include valuable back-up work which will pay off dividends when your child goes back to school in September and can pick up exactly where they left off. Above all, have fun and get out and about and give your child lots of new experiences that they will learn and benefit from - all mental stimulation is of value.
Interestingly, my daughter remembers very little of any history and geography taught to her at school - but having been to Rome, Pompeii, Athens & Boston over the past years, she remembers every detail of these trips and just about everything she learned while she was there. It is because she has seen it and experienced it rather than had to struggle to understand a teacher and something in a book which just isn't 'real'.
Sunday, 18 July 2010
Entrusting the Care of your Child to Others
It might be just me, but I have always found it hard to leave my daughter in the care of a relative stranger for the first few times. The first time this came about was when she was still at primary school and we got a place on th Family Link scheme. Family Link is a brilliant idea, your child goes for a few hours or even a whole weekend to a family willing to look after them like they are their own child, giving you the parent a little respite. If you are interested, ask your social worker if you have one or get in touch with your local Social Services.
However, at the time I had a few problems with relaxing after handing my precious child over to people I knew very little about, especially on the overnight stay. A lot of emotions came into play - guilt for 'dumping' her so that I could have a break, worry over whether or not she would cope, anxiety over the credentials of this couple and whether or not they were fit to look after my daughter - silly I know, but that was how I felt. Thankfully it didn't last long - the people concerned were a lovely couple and my daughter thoroughly enjoyed each and every visit, and even though they haven't been her 'family' for many years now, we still keep in touch.
Even now I have the same feelings when leaving my daughter in the care of someone new. This week, for the first time ever, my worries were justified. My daughter has a care worker once a week to take her out wherever she wants to go for the morning while I am at work. So far over the past year this has worked wonderfully well and I have surpressed any initial anxieties as our regular care worker is a lovely lady and completely trustworthy. However, the past fortnight we have had a stand-in as she was away on holiday. We have had the stand-in lady before and it was fine, but this time for some reason she saw fit to just dump my daughter at the door of my work and leave without checking to see she had found me or even popping her head round the door to see if I was there. The first time I was a little put out but dismissed it thinking that maybe she was late for another appointment. The second time, I ran after her and had to stand in front of her car in order to speak to the woman - no sensible explanation when I asked her to please not leave my child on the doorstep like a sack of potatoes, just this woman accusing me of being rude, telling me we probably wouldn't see her again anyway and screeching off in a cloud of dust. As soon as I got home, I phoned the office to report this - in my opinion, if you are caring for a vulnerable person, you do your job properly, no half measures, because the possibility of something going wrong is high and chances should not be taken.
I am very glad that my own daughter is a very sensible young lady and usually able to cope with situations like this, but that is not the point - she should not have to be put in that position. This has been very upsetting to me - it makes me wonder what other corners were cut during her time with this woman, and I probably will never know as my daughter is unable to tell me. So while I am completely in favour of respite care, I think it pays to be ever vigilant about just who is taking care of your child.
N.B. Last week when we had our regular careworker back, she noticed in the paperwork folder that the stand-in had not filled in the financial form necessary to be completed each week - I give my daughter an amount of money to cover the costs of the day's activity. The previous week, my daughter had wanted to go bowling. We did, however, find the receipt from the bowling alley and discovered that the stand-in careworker had only purchased single games for my daughter....so the poor girl had stood there and bowled all by herself while this woman sat and watched......nice, that must have been great fun for my daughter. Needless to say, I refuse to let that woman ever 'care' for my child again!
However, at the time I had a few problems with relaxing after handing my precious child over to people I knew very little about, especially on the overnight stay. A lot of emotions came into play - guilt for 'dumping' her so that I could have a break, worry over whether or not she would cope, anxiety over the credentials of this couple and whether or not they were fit to look after my daughter - silly I know, but that was how I felt. Thankfully it didn't last long - the people concerned were a lovely couple and my daughter thoroughly enjoyed each and every visit, and even though they haven't been her 'family' for many years now, we still keep in touch.
Even now I have the same feelings when leaving my daughter in the care of someone new. This week, for the first time ever, my worries were justified. My daughter has a care worker once a week to take her out wherever she wants to go for the morning while I am at work. So far over the past year this has worked wonderfully well and I have surpressed any initial anxieties as our regular care worker is a lovely lady and completely trustworthy. However, the past fortnight we have had a stand-in as she was away on holiday. We have had the stand-in lady before and it was fine, but this time for some reason she saw fit to just dump my daughter at the door of my work and leave without checking to see she had found me or even popping her head round the door to see if I was there. The first time I was a little put out but dismissed it thinking that maybe she was late for another appointment. The second time, I ran after her and had to stand in front of her car in order to speak to the woman - no sensible explanation when I asked her to please not leave my child on the doorstep like a sack of potatoes, just this woman accusing me of being rude, telling me we probably wouldn't see her again anyway and screeching off in a cloud of dust. As soon as I got home, I phoned the office to report this - in my opinion, if you are caring for a vulnerable person, you do your job properly, no half measures, because the possibility of something going wrong is high and chances should not be taken.
I am very glad that my own daughter is a very sensible young lady and usually able to cope with situations like this, but that is not the point - she should not have to be put in that position. This has been very upsetting to me - it makes me wonder what other corners were cut during her time with this woman, and I probably will never know as my daughter is unable to tell me. So while I am completely in favour of respite care, I think it pays to be ever vigilant about just who is taking care of your child.
N.B. Last week when we had our regular careworker back, she noticed in the paperwork folder that the stand-in had not filled in the financial form necessary to be completed each week - I give my daughter an amount of money to cover the costs of the day's activity. The previous week, my daughter had wanted to go bowling. We did, however, find the receipt from the bowling alley and discovered that the stand-in careworker had only purchased single games for my daughter....so the poor girl had stood there and bowled all by herself while this woman sat and watched......nice, that must have been great fun for my daughter. Needless to say, I refuse to let that woman ever 'care' for my child again!
Monday, 12 July 2010
Endings and New Beginnings
As a Learning Support Assistant, I work for three years with the same child throughout infant school until they go off to juniors. I have just had to say goodbye to the little boy I have been working with since 2007 and it was with mixed feelings. On the one hand I am very sad that I will no longer be working with him as it has been such a fun three years - he's an amazing little chap, with such a personality, and you form quite a bond over this length of time. On the other hand, I am very happy that he has progressed so far and is more than ready to tackle junior school, and that I had a hand in getting him to this stage.
So now I move on to the next child, who will be completely different and a whole new challenge. I'm looking forward to it!
So now I move on to the next child, who will be completely different and a whole new challenge. I'm looking forward to it!
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