I'm sure you and I could never have too much holiday, but I'm afraid the past month or so has been quite tough for my daughter. What with the three weeks she had off from college and the double-double bank holiday weekends, her routine has been well and truly thrown.
This hasn't caused any major outward difficulties, but I did begin to notice she was becoming more and more introverted and spending far too much time alone in her room. It was getting increasingly difficult to get her to come out anywhere, even to walk the dog, and she's a grown woman, I can hardly manhandle her! This isn't helped by the fact that when you are at home and getting on with the day-to-day stuff, time whizzes past and you suddenly realise she has been up there for more than a couple of hours listening to the same CD over and over again.
I also noticed a definite deterioration in her speech - she couldn't even be bothered to answer a question with a 'yes', just gave me a thumbs up. Again, it's easy for her to let her conversation slide when she is at home as we know her so well and can second guess her meaning. However, I can't begin to count the times over the years when I have had major meltdowns myself in order to get her to make a proper sentence instead of grunting a monosyllable at me. So frustrating when you know that if she was with a stranger she would make the effort to talk properly.
This kind of situation hasn't been a problem for quite some time as for the last couple of years her Monday and Friday activities have continued throughout the school holidays so she has had the extra outside stimulation. So the month of April 2011 was not a good one for her. I knew she was happy to get back into routine on the first day back at her theatre group when she was up at about 6 a.m. and dressed and ready to go about an hour before she needed to be - as well as doing half the housework on her way!
I don't think this is a situation that will arise very frequently - Royal weddings & Easter don't usually coincide - but it is obviously something I have to watch out for and try to ensure she doesn't slip beneath my radar again!
Tuesday, 10 May 2011
Tuesday, 8 March 2011
Moving On
As a special needs learning assistant, a lot of people ask me if I get upset when a child I have worked with for three years solidly on a one-to-one basis leaves and goes on to primary school.
The simple answer is 'no'. You do become very attached to the child when you are working with them - after all, your duties are not just teaching reading and writing but may include helping them to eat, change clothes, make friendships, all the day to day minutiae that a parent does at home. However, when the time comes for them to move on, the actual reaction is one of happiness that the child is ready for the next stage in their life and that you had a large part in making this happen. Of course there is a tinge of sadness on the actual last day of term when you bid them goodbye, but that soon dissipates and you look forward to hearing about their progress in the future.
It is slightly sad that sometimes you will not hear how they are getting on for months, perhaps years, but when you do learn of their achievements it is with a sense of pride.
I've also had to experience the flipside of the coin when it has to be admitted that the child is in the wrong place at mainstream school and needs to go to special school as they are just not getting the kind of help they need. This is perhaps a bit more upsetting in some ways as you have to deal with a slight sense of failure. It would be nice to have the power to help every child that comes your way in the job, but it isn't always the case which can be tough to deal with on a personal level. The trick is to take a step back and accept this fact for what it is, be glad that someone with more expertise is taking over and hope that they will be the ones to make the difference. Unfortunately, these are the cases where you may not ever hear about the child's progress in their new school, but it is also your turn to move on.
The simple answer is 'no'. You do become very attached to the child when you are working with them - after all, your duties are not just teaching reading and writing but may include helping them to eat, change clothes, make friendships, all the day to day minutiae that a parent does at home. However, when the time comes for them to move on, the actual reaction is one of happiness that the child is ready for the next stage in their life and that you had a large part in making this happen. Of course there is a tinge of sadness on the actual last day of term when you bid them goodbye, but that soon dissipates and you look forward to hearing about their progress in the future.
It is slightly sad that sometimes you will not hear how they are getting on for months, perhaps years, but when you do learn of their achievements it is with a sense of pride.
I've also had to experience the flipside of the coin when it has to be admitted that the child is in the wrong place at mainstream school and needs to go to special school as they are just not getting the kind of help they need. This is perhaps a bit more upsetting in some ways as you have to deal with a slight sense of failure. It would be nice to have the power to help every child that comes your way in the job, but it isn't always the case which can be tough to deal with on a personal level. The trick is to take a step back and accept this fact for what it is, be glad that someone with more expertise is taking over and hope that they will be the ones to make the difference. Unfortunately, these are the cases where you may not ever hear about the child's progress in their new school, but it is also your turn to move on.
Saturday, 26 February 2011
Harsh
I've read a couple of things on blogs over the past few weeks that have bothered me intensely as being grossly unfair. I won't go into specifics, but basically it's been people who have no idea what they are talking about criticising parents of special needs children.
Years ago when I was studying to become a SENCO (Special Educational Needs Coordinator) one small paragraph in the blurb we were given to read stood out for me as crucially important. It was this:
'Never judge the parents of a child with special needs'
This was advice to those working with SEN children and I felt it should be put on a plaque somewhere prominent in every school. As a parent of a child with Down's syndrome, I have experienced many thoughtless comments by members of staff in various schools and have had to mostly put them down to the other person having no idea what I go through on a daily basis and try to ignore them. Sometimes I have protested - how about when I was told not to send apples in her lunchbox as her method of eating them was embarrassing? (Now seriously, would a teacher say that to the parents of a 'normal' child? Ever?)
The point is, unless you have intimate knowledge of what those parents lives are like when dealing with their child, you have no right to make assumptions and put in your twopenny-worth. It's hard to remember this - we are all guilty of it with everyone we meet, it's a human trait. But when thinking about someone who cares 24/7, seven days a week, 365 days a year for their child with special needs, it pays to have a grain of empathy. If you see that mum looking frazzled and angry, dragging a surly child into school ten minutes late with breakfast all down it's front and shirt untucked, do you immediately think what a bad parent she is? Or does it cross your mind that she might have had very little sleep that night, had to deal with one of 'those' mornings where her child is on a 'go slow' (if you have a child with Down's, you'll know what I'm talking about!) and it has been impossible to get them dressed, fed, washed and out of the door in time for school without major meltdowns, as well as perhaps having siblings to get ready too.
There are other times when perhaps they are being a 'bad parent' but are at the same time going through very hard times emotionally or financially and just aren't coping. Then they don't need your judgement, they need your help.
A phrase I read quoted on a blog, written by a reporter in a newspaper, was that these parents 'wear their child's disability like a thorny crown' meaning that we use it to gain sympathy and to achieve what we want. Nothing could be further from the truth. The hard fact is, your child's disability becomes a major part of your life and something that cannot and should not be ignored or not talked about just in case it embarrasses someone else. Other parents complain about their kids keeping bad company or being rude and untidy at home and we are sympathetic; however, if the parents of a special needs child have a much needed moan about how many times they had to clean up excrement that day or about the huge tantrum thrown in the shopping centre because the child is scared of crowds, there is an uncomfortable silence. We are not looking for martyrdom, just someone to say 'Wow, that must have been hard for you, how are you doing?' Most of the time we cope and can live our lives with a smile on our faces, but it must be remembered that sometimes it is not easy and we are allowed to have bad days. We don't do it on purpose to make the rest of the population feel uncomfortable, it's just the way it is and we are doing the best we can under the circumstances. Giving birth to a child with special needs is not a life choice, it is something that just happens - we all deal with it in our own way, the best way we can, and if it doesn't measure up to what you think is the best way, don't make harsh judgements, try offering a little help and understanding instead.
Years ago when I was studying to become a SENCO (Special Educational Needs Coordinator) one small paragraph in the blurb we were given to read stood out for me as crucially important. It was this:
'Never judge the parents of a child with special needs'
This was advice to those working with SEN children and I felt it should be put on a plaque somewhere prominent in every school. As a parent of a child with Down's syndrome, I have experienced many thoughtless comments by members of staff in various schools and have had to mostly put them down to the other person having no idea what I go through on a daily basis and try to ignore them. Sometimes I have protested - how about when I was told not to send apples in her lunchbox as her method of eating them was embarrassing? (Now seriously, would a teacher say that to the parents of a 'normal' child? Ever?)
The point is, unless you have intimate knowledge of what those parents lives are like when dealing with their child, you have no right to make assumptions and put in your twopenny-worth. It's hard to remember this - we are all guilty of it with everyone we meet, it's a human trait. But when thinking about someone who cares 24/7, seven days a week, 365 days a year for their child with special needs, it pays to have a grain of empathy. If you see that mum looking frazzled and angry, dragging a surly child into school ten minutes late with breakfast all down it's front and shirt untucked, do you immediately think what a bad parent she is? Or does it cross your mind that she might have had very little sleep that night, had to deal with one of 'those' mornings where her child is on a 'go slow' (if you have a child with Down's, you'll know what I'm talking about!) and it has been impossible to get them dressed, fed, washed and out of the door in time for school without major meltdowns, as well as perhaps having siblings to get ready too.
There are other times when perhaps they are being a 'bad parent' but are at the same time going through very hard times emotionally or financially and just aren't coping. Then they don't need your judgement, they need your help.
A phrase I read quoted on a blog, written by a reporter in a newspaper, was that these parents 'wear their child's disability like a thorny crown' meaning that we use it to gain sympathy and to achieve what we want. Nothing could be further from the truth. The hard fact is, your child's disability becomes a major part of your life and something that cannot and should not be ignored or not talked about just in case it embarrasses someone else. Other parents complain about their kids keeping bad company or being rude and untidy at home and we are sympathetic; however, if the parents of a special needs child have a much needed moan about how many times they had to clean up excrement that day or about the huge tantrum thrown in the shopping centre because the child is scared of crowds, there is an uncomfortable silence. We are not looking for martyrdom, just someone to say 'Wow, that must have been hard for you, how are you doing?' Most of the time we cope and can live our lives with a smile on our faces, but it must be remembered that sometimes it is not easy and we are allowed to have bad days. We don't do it on purpose to make the rest of the population feel uncomfortable, it's just the way it is and we are doing the best we can under the circumstances. Giving birth to a child with special needs is not a life choice, it is something that just happens - we all deal with it in our own way, the best way we can, and if it doesn't measure up to what you think is the best way, don't make harsh judgements, try offering a little help and understanding instead.
Sunday, 6 February 2011
OCD
Or Obsessive Compulsive Disorder...perhaps a rather strong term for it, but if you live with someone with Down's Syndrome, you'll know all about it! Things just have to be done in a certain way, at the right times and on the right days. Should the sequence be broken, it can be very upsetting for the person with Down's and cause all sorts of problems for the people around them.
Let me give you an example. My daughter no longer needs help in getting changed for bed at night and goes up quite happily on her own to do so. The trouble is, her bedtime routine has now become so long and involved, it can take up to an hour. This is because she simply has to:
a) arrange all her toys in the correct places for the night. She has about fifty soft toys on her bed, all have their own place in the pecking order of affection. There are about three that get to sleep in the bed with her - these are the number ones. Next down the list are the toys that get to sleep on the spare bed together, with a pillow and one of her sweatshirts for a blanket. Then there are the ones that sleep under her bed together, also arranged carefully on a jumper with a sweatshirt blanket. Finally, there are the ones she isn't that fond of but refuses to get rid of who are jammed all along the wall on the edge of the bed.
b) There are the fairy lights and lava lamps to switch on.
c) She has to carefully fold her clothes up ready for the following day or pick out clean ones. She wears clothes in 2 day cycles, despite my entreaties to change her clothes every day. I only win if food has been spilt and she can recognise that to wear a mucky jumper the next day would not be nice.
d) The bathroom routine - washing hands and face, cleaning teeth, using mouthwash, putting on body spray, and going to the toilet.
e) Arranging the necessities she might need in the night around her pillow - watch, torch, water bottle, tissue box and occasionally a plastic gun if Dr.Who has been particularly scary that day.
I admit this is the worst collection of obsessive routines she has - others throughout the day can be circumnavigated if necessary with only a few glares and sulks on her part. The problem is where to draw the line between learning good routines that will serve her all her life when I am not there to remind her to clean her teeth etc., and an obsession that slowly takes up a huge chunk of the day. I don't want to be the heavy and treat her like a child, but on the other hand she has to realise just how much time should be spent on this kind of activity. Luckily she can be reasoned with up to a certain point and together with the threat of a serious toy cull, we have cut the time of getting ready for bed to about half an hour.
This tendency to OCD was worse when she was younger and less able to understand adult reasoning. Mealtimes were always a big bone of contention - should we be out for the day or on holiday, or even decide on the spur of the moment to eat out, the change could cause major mood swings. It used to be that if she hadn't eaten her lunch by 12 o'clock, we would have the sulks, the sudden inability to walk faster than a snail, or even tears. The way round this has been to explain at the beginning of the day that things would be different and that this was a good and exciting thing once in a while, giving her as much of a plan for the day as is possible. The other trick is to carry a spare biscuit or piece of fruit in my bag for slipping to her at the moment her face begins to fall, which usually satisfies the OCD until lunch is eaten. Missing a favourite TV programme would also cause a ruckus - thank goodness now for 'catch up' tv. The plus point here is that she is very good at telling the time...
I don't think it is Obsessive Compulsive Disorder in the true sense of the phrase, but more a way of keeping things familiar and safe. It's tough to cope sometimes when you don't understand everything around you and your fingers don't move as fast as other people's. So a tactic that works is to have set routines that you know you can do that get you successfully through the day clean, fed and happy - it's what we all do really. It can be frustrating for the rest of the family, but a little understanding goes a very long way. As a parent (and sometimes in my job too) I just try to keep an eye out for when a routine starts heading for an obsession and then take steps to head it off before it becomes a problem.
There is one routine I shan't be trying to change however - she does a brilliant job of tidying up the sitting room while I am walking the dog in the mornings!
Let me give you an example. My daughter no longer needs help in getting changed for bed at night and goes up quite happily on her own to do so. The trouble is, her bedtime routine has now become so long and involved, it can take up to an hour. This is because she simply has to:
a) arrange all her toys in the correct places for the night. She has about fifty soft toys on her bed, all have their own place in the pecking order of affection. There are about three that get to sleep in the bed with her - these are the number ones. Next down the list are the toys that get to sleep on the spare bed together, with a pillow and one of her sweatshirts for a blanket. Then there are the ones that sleep under her bed together, also arranged carefully on a jumper with a sweatshirt blanket. Finally, there are the ones she isn't that fond of but refuses to get rid of who are jammed all along the wall on the edge of the bed.
b) There are the fairy lights and lava lamps to switch on.
c) She has to carefully fold her clothes up ready for the following day or pick out clean ones. She wears clothes in 2 day cycles, despite my entreaties to change her clothes every day. I only win if food has been spilt and she can recognise that to wear a mucky jumper the next day would not be nice.
d) The bathroom routine - washing hands and face, cleaning teeth, using mouthwash, putting on body spray, and going to the toilet.
e) Arranging the necessities she might need in the night around her pillow - watch, torch, water bottle, tissue box and occasionally a plastic gun if Dr.Who has been particularly scary that day.
I admit this is the worst collection of obsessive routines she has - others throughout the day can be circumnavigated if necessary with only a few glares and sulks on her part. The problem is where to draw the line between learning good routines that will serve her all her life when I am not there to remind her to clean her teeth etc., and an obsession that slowly takes up a huge chunk of the day. I don't want to be the heavy and treat her like a child, but on the other hand she has to realise just how much time should be spent on this kind of activity. Luckily she can be reasoned with up to a certain point and together with the threat of a serious toy cull, we have cut the time of getting ready for bed to about half an hour.
This tendency to OCD was worse when she was younger and less able to understand adult reasoning. Mealtimes were always a big bone of contention - should we be out for the day or on holiday, or even decide on the spur of the moment to eat out, the change could cause major mood swings. It used to be that if she hadn't eaten her lunch by 12 o'clock, we would have the sulks, the sudden inability to walk faster than a snail, or even tears. The way round this has been to explain at the beginning of the day that things would be different and that this was a good and exciting thing once in a while, giving her as much of a plan for the day as is possible. The other trick is to carry a spare biscuit or piece of fruit in my bag for slipping to her at the moment her face begins to fall, which usually satisfies the OCD until lunch is eaten. Missing a favourite TV programme would also cause a ruckus - thank goodness now for 'catch up' tv. The plus point here is that she is very good at telling the time...
I don't think it is Obsessive Compulsive Disorder in the true sense of the phrase, but more a way of keeping things familiar and safe. It's tough to cope sometimes when you don't understand everything around you and your fingers don't move as fast as other people's. So a tactic that works is to have set routines that you know you can do that get you successfully through the day clean, fed and happy - it's what we all do really. It can be frustrating for the rest of the family, but a little understanding goes a very long way. As a parent (and sometimes in my job too) I just try to keep an eye out for when a routine starts heading for an obsession and then take steps to head it off before it becomes a problem.
There is one routine I shan't be trying to change however - she does a brilliant job of tidying up the sitting room while I am walking the dog in the mornings!
Tuesday, 1 February 2011
The Importance of Continuity
This may seem like stating the obvious, but if you want your child to learn anything well there has to be some form of continuity. Repetition and lots of it is the key to entrenching something into the mind of any child, but particularly one with Down's Syndrome.
In the past it has been quite a challenge to ensure that the child I am teaching manages to hold on to what they have learned throughout the school holidays. I have mentioned on here before all the little tasks that can be done in order to keep up the work without the child realising they are still working even though at home.
At the moment I am teaching a little boy who needs a great deal of repetition, but unfortunately has not yet made more than a couple of full weeks at school in the time I have been with him, due to various reasons. This means that whenever we have a couple of really good days of working hard, making some real progress with signing and attempts at speech, after a break at home for a few days, 90% of that knowledge has faded as the routine has been broken and it has not been reinforced at home. I know from personal experience with my daughter that it takes quite a while to get a piece of learning in, but once it's in there, it's there for life - but this cannot be accomplished without work both at home and school in conjunction with each other.
In order for steady progress and visible results to be seen, there has to be some cooperation between parents and school - it cannot be expected for the school to produce a miracle during the few hours they have the child if their work is not supported at home for the other 18 hours of each day...and weekends...and holidays! No-one said it would be easy!
In the past it has been quite a challenge to ensure that the child I am teaching manages to hold on to what they have learned throughout the school holidays. I have mentioned on here before all the little tasks that can be done in order to keep up the work without the child realising they are still working even though at home.
At the moment I am teaching a little boy who needs a great deal of repetition, but unfortunately has not yet made more than a couple of full weeks at school in the time I have been with him, due to various reasons. This means that whenever we have a couple of really good days of working hard, making some real progress with signing and attempts at speech, after a break at home for a few days, 90% of that knowledge has faded as the routine has been broken and it has not been reinforced at home. I know from personal experience with my daughter that it takes quite a while to get a piece of learning in, but once it's in there, it's there for life - but this cannot be accomplished without work both at home and school in conjunction with each other.
In order for steady progress and visible results to be seen, there has to be some cooperation between parents and school - it cannot be expected for the school to produce a miracle during the few hours they have the child if their work is not supported at home for the other 18 hours of each day...and weekends...and holidays! No-one said it would be easy!
Friday, 21 January 2011
Thoughts on Working as an LSA
Most of the time I love my job. There is nothing more amazing than being the source of a child making progress in an area where they struggle. Over the years I have celebrated the big achievements and many more times, the very small ones that have been hard won. The day a child who barely spoke when I became his LSA finally said my name; when a little girl spelled her first word correctly without me having to step in; when a boy with severe dyslexia managed to write his first few sentences completely unaided. Moments like these make the job worthwhile and give you the impetus to carry on despite the poor wages!
But there other times when you feel completely defeated. Nothing you try works and you have exhausted all your strategies and tactics. A lot of the time some lateral thinking or maybe someone else's fresh perspective on the problem are enough to get things back on track. However, occasionally you really do have to admit defeat. This can certainly bring you down to earth with a bump and get you quite depressed. It's hard not to take it personally - for me anyway.
Our headmistress said something that made me think recently - 'you can't help every child' - which is sad but very true. You can do your best, but there is no guaranteee it will work. Outside circumstances affect the situation too - does the child get helped and encouraged at home; do they receive the professional help they should be getting such as speech therapy or OT; are the parents supportive of your efforts; is the child in need of special schooling rather than what you can offer? It's not just the few hours of tuition that you give, it's the whole package.
So you have to distance yourself sometimes, accept the defeats, celebrate the successes, and when the time comes to move on to the next child in your care, be confident in the knowledge that you did your utmost for the previous one.
But there other times when you feel completely defeated. Nothing you try works and you have exhausted all your strategies and tactics. A lot of the time some lateral thinking or maybe someone else's fresh perspective on the problem are enough to get things back on track. However, occasionally you really do have to admit defeat. This can certainly bring you down to earth with a bump and get you quite depressed. It's hard not to take it personally - for me anyway.
Our headmistress said something that made me think recently - 'you can't help every child' - which is sad but very true. You can do your best, but there is no guaranteee it will work. Outside circumstances affect the situation too - does the child get helped and encouraged at home; do they receive the professional help they should be getting such as speech therapy or OT; are the parents supportive of your efforts; is the child in need of special schooling rather than what you can offer? It's not just the few hours of tuition that you give, it's the whole package.
So you have to distance yourself sometimes, accept the defeats, celebrate the successes, and when the time comes to move on to the next child in your care, be confident in the knowledge that you did your utmost for the previous one.
Tuesday, 4 January 2011
Difficult Decisions
When your child has Down's Syndrome, it is incredibly hard to predict the future. Each child is different and affected differently by their condition - Down's Syndrome is a blanket term and does not indicate all the variations that may occur. General assumptions include heart problems, shortness of stature, stubborness, severe learning difficulties. Yet my own daughter is as healthy as an ox and rarely stubborn; I've known a lad who was six foot tall and spoke so well you would not have known he had Downs; there are other children who have the utmost difficulty in saying even one word and who understand very little of what is said to them - the spectrum is vast.
So when it comes to choosing an education for your child, it is vital that the choice is made to suit that individual child regardless of their diagnosis. This is not always easy to do and sometimes it is a pure leap of faith, When my daughter was a baby and visited various paediatricians, the future was predicted to be bleak. The basic concensus was that she would grow up to be a vegetable and be nothing but a millstone round my neck - bearing in mind, this was over 20 years ago in Greece where it has taken a while for people with disabilities to be accepted. However, as she grew and after a lot of work was put in at home with Portage and a place in a pre-school where the teacher was trained in SEN (special education needs), it was clear that she had far more potential.
Therefore, when we returned to the UK and she was given a place in mainstream infant school, I was adamant that she should stay in mainstream education for as long as possible - it was obvious that she was coping, despite having limited language skills. She was reading by the time she moved on to primary school, was able to follow class routines, had a wide range of friends, was toilet trained, able to eat unaided, change for PE with the help of her LSA (learning support assistant) and pretty much understood everything that was going on. So in my heart I knew she was in the right place. Years later in secondary school however, when her peers were choosing exam options, wearing make-up and having boyfriends, it was time to make the decision for her to leave mainstream education and go to a special school teen unit. At the time, with the options available it seemed the only choice to make and was incredibly hard to come to terms with. In retrospect, perhaps it wasn't the best we could have done for her, but you cannot know that at the time. All you can do is what you think best - but what has to be taken into consideration is what is best for your child, not for you. In our case, despite a couple of years when my daughter was bored to tears at this unit and not at all happy, she came out the other side and went to college after all, and is now in a programme of activities that suit her perfectly. I have to admit that a lot of it is more due to luck than judgement - or at least that is how it feels.
The point of this post though is that sometimes it has to be accepted that mainstream is not the best option for your child. I have worked with several children with Down's through their infant years and each one was hugely different. One needed a lot of help initially to learn social skills (and not to swing off my hair!) but was very capable when it came to learning to read and write; another could not ever be left alone or they would wander off but was very able to speak and cope with written work; yet another had barely any language skills but understood everything going on around them and could be left to their own devices alongside the rest of the class when not in a one-to-one lesson; yet another was sweet, calm and affectionate but could not talk, sign or comprehend 90% of what was going on in a busy classroom.
When it is blatantly obvious that the child is getting nothing out of a mainstream education and failing to reach their potential, then it is time to re-stock and consider other options. The bottom line is that the child should be given all the help they need to fulfill their potential and anything less than this is depriving them of a chance to lead as normal a life as possible in later years. As a parent and an LSA, I can see both sides of the situation but I have always felt that the child's needs should come first - a child is totally dependant on the adults around it, therefore the adults should try to offer whatever is necessary to help that child grow and learn. It is not easy, but once you have a child with Down's, your life changes in so many ways, one of which is having to become incredibly unselfish - you have this new person who is totally dependant on you for everything and who will stay that way for far longer than 'normal' children. Tough decisions have to be made on a regular basis and many of these decisions are very hard to face up to but have to be faced no matter how unconfortable they make you feel.
I recently visited a special school and was amazed and impressed at the amount of equipment and facilities available. The staff/pupil ratio was 2-1 and in some cases 1-1. The staff were knowledgeable, calm and cheerful and the children were happy. I think in a lot of people's minds the words 'special school' conjure up an antiquated view of somewhere bleak where children with SEN are sent to get them out of the way and give them something to occupy their day. Far from it - these days they are vibrant cheerful places which can open all kinds of doors for the children that need it. If it comes to the point where mainstream is not the place for your child, then the alternative is very, very good.
So when it comes to choosing an education for your child, it is vital that the choice is made to suit that individual child regardless of their diagnosis. This is not always easy to do and sometimes it is a pure leap of faith, When my daughter was a baby and visited various paediatricians, the future was predicted to be bleak. The basic concensus was that she would grow up to be a vegetable and be nothing but a millstone round my neck - bearing in mind, this was over 20 years ago in Greece where it has taken a while for people with disabilities to be accepted. However, as she grew and after a lot of work was put in at home with Portage and a place in a pre-school where the teacher was trained in SEN (special education needs), it was clear that she had far more potential.
Therefore, when we returned to the UK and she was given a place in mainstream infant school, I was adamant that she should stay in mainstream education for as long as possible - it was obvious that she was coping, despite having limited language skills. She was reading by the time she moved on to primary school, was able to follow class routines, had a wide range of friends, was toilet trained, able to eat unaided, change for PE with the help of her LSA (learning support assistant) and pretty much understood everything that was going on. So in my heart I knew she was in the right place. Years later in secondary school however, when her peers were choosing exam options, wearing make-up and having boyfriends, it was time to make the decision for her to leave mainstream education and go to a special school teen unit. At the time, with the options available it seemed the only choice to make and was incredibly hard to come to terms with. In retrospect, perhaps it wasn't the best we could have done for her, but you cannot know that at the time. All you can do is what you think best - but what has to be taken into consideration is what is best for your child, not for you. In our case, despite a couple of years when my daughter was bored to tears at this unit and not at all happy, she came out the other side and went to college after all, and is now in a programme of activities that suit her perfectly. I have to admit that a lot of it is more due to luck than judgement - or at least that is how it feels.
The point of this post though is that sometimes it has to be accepted that mainstream is not the best option for your child. I have worked with several children with Down's through their infant years and each one was hugely different. One needed a lot of help initially to learn social skills (and not to swing off my hair!) but was very capable when it came to learning to read and write; another could not ever be left alone or they would wander off but was very able to speak and cope with written work; yet another had barely any language skills but understood everything going on around them and could be left to their own devices alongside the rest of the class when not in a one-to-one lesson; yet another was sweet, calm and affectionate but could not talk, sign or comprehend 90% of what was going on in a busy classroom.
When it is blatantly obvious that the child is getting nothing out of a mainstream education and failing to reach their potential, then it is time to re-stock and consider other options. The bottom line is that the child should be given all the help they need to fulfill their potential and anything less than this is depriving them of a chance to lead as normal a life as possible in later years. As a parent and an LSA, I can see both sides of the situation but I have always felt that the child's needs should come first - a child is totally dependant on the adults around it, therefore the adults should try to offer whatever is necessary to help that child grow and learn. It is not easy, but once you have a child with Down's, your life changes in so many ways, one of which is having to become incredibly unselfish - you have this new person who is totally dependant on you for everything and who will stay that way for far longer than 'normal' children. Tough decisions have to be made on a regular basis and many of these decisions are very hard to face up to but have to be faced no matter how unconfortable they make you feel.
I recently visited a special school and was amazed and impressed at the amount of equipment and facilities available. The staff/pupil ratio was 2-1 and in some cases 1-1. The staff were knowledgeable, calm and cheerful and the children were happy. I think in a lot of people's minds the words 'special school' conjure up an antiquated view of somewhere bleak where children with SEN are sent to get them out of the way and give them something to occupy their day. Far from it - these days they are vibrant cheerful places which can open all kinds of doors for the children that need it. If it comes to the point where mainstream is not the place for your child, then the alternative is very, very good.
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