I have always been a firm believer in the power that animals have regarding children - and adults - with special needs. Firstly, animals seem to sense that they must be calm and gentle around these people - I remember being round at a lady's house in Greece for a support group meeting and noticing that my daughter had crawled off somewhere. On finding her, she was on the kitchen balcony with her arms through the railings petting two enormous German Shepherd dogs from the house next door - the same dogs that had snarled, barked and thrown themselves at us as we passed the gate earlier. They were sitting there, calm as you like with soppy expressions as she stroked their heads.
Secondly, the spur of enjoying the company of an animal can get the child to achieve far more than us regular humans! My daughter was a very late walker - she had been sidling around using the furniture to prop her up for a couple of years but she reached three and a half and still did not walk by herself. Then we got a small, lively puppy and she wanted to get to him badly...but puppies don't stay at the edges of rooms where the furniture is! So her first steps were in a manful attempt to get to this puppy and from that day on she was walking.
I realise that not every family is like ours - over the years we've had dogs, a cat, a rabbit, canaries, budgies, a chicken, two ducks, fish, gerbils, hamsters and a parrot, as well as regular visits to my sister's riding stables. But I do think that contact with animals and birds is so beneficial - animals don't care what you look like, whether you can talk or walk, whether you can read or count, they just care about who you are. This takes away all the pressure and anxiety for the child/adult and they can relax and be themselves. This in turn can cause quite major developmental progress. I have been a 'side-walker' for Riding for the Disabled and seen so many cases of children making huge steps in their learning because of the incentive of being on a horse. Add to that the physical benefits of developing balance and core strength, as well as increased mobility for children that may struggle to get around, it's a winning combination.
In Britain there are many centres for Riding for the Disabled, although I have found they tend to cater for groups from special schools rather than private lessons as the ponies they use are lent by people who have them in the stables for livery, which means after school and over weekends the horse is probably being ridden by it's owner. However, it doesn't hurt to ask around just in case private lessons are available - if your child goes to mainstream school, they will not be going in a school group. Check out the Riding for the Disabled website for details of centres near you and more information.
Even owning a pet at home has all sorts of benefits - one of my daughter's jobs is to make sure the water bowl is always full, teaching her responsibility. She had to learn that this job must be done every day, not just weekdays, or the dog would die of thirst! The exercise from going on regular walks with the dogs is so good for her - with adulthood she has trouble maintaining her weight and 'exercise' is not attractive. But offer her a hike with the dog and she's the first to be ready. She has also learnt patience, gentleness and even about loss and death, all valuable life lessons.
There is even a scheme in the south of England - Reading Educational Assistance Dogs - where dogs are taken into schools to help the less able children with their reading - a dog doesn't care if you make a mistake or take half an hour to read one paragraph. This gives the children confidence as no-one is judging them - plus the excitement of having a dog in school makes the lesson fun!
Monday 28 June 2010
Thursday 24 June 2010
Benefits
One thing you should definitely do as soon as possible is check that you are receiving the correct benefits. Your life changes radically when you have a child with Down's Syndrome and this may also affect your income, so any help that is available is worth getting.
I don't confess to be an expert here - I only know about my own circumstances - but the best thing to do is get in touch with someone who knows. The Down's Syndrome Association have telephone advisors on the subject, as do Carers UK. The Benefits Hotline is also excellent and can be contacted by phone.
If you are a new parent, you may be surprised to discover just how early on you are able to start claiming Disability Living Allowance - don't be disheartened by the thick form you have to fill in, it is worth it in the end. The new government's Budget may change the way things are arranged in the future, but I am sure that anyone truly entitled will not be affected greatly. You may also be entitled to Carer's Allowance if you earn below £100 per week but be careful of your figures as they are very hot on pulling you up if you make a mistake, and you will have to repay any money you were not entitled to.
Also check out what you may be entitled to in the way of equipment - if your child is still having problems walking long distances yet they are getting too large for the average buggy, you are entitled to a larger specialised buggy. I wish I had been in this country while my daughter was small as we got through about 6 buggies as she was a late walker and still needed the wheels until she was about 6 years old for longer walks and days out.
If your child is still in nappies after the 'normal' age for toilet training, check with your health visitor or doctor's surgery as you may be entitled to free nappies.
It is definitely worth taking up any benefits that you are able to - you will find that new and unexpected expenses rear their heads along the way and anything that relieves the pressure, no matter how small, can't be bad.
If your child has a lot of trouble getting about, you may also be able to be a part of the Motability scheme which provides a 'free' car - although we have not been able to access this.
I don't confess to be an expert here - I only know about my own circumstances - but the best thing to do is get in touch with someone who knows. The Down's Syndrome Association have telephone advisors on the subject, as do Carers UK. The Benefits Hotline is also excellent and can be contacted by phone.
If you are a new parent, you may be surprised to discover just how early on you are able to start claiming Disability Living Allowance - don't be disheartened by the thick form you have to fill in, it is worth it in the end. The new government's Budget may change the way things are arranged in the future, but I am sure that anyone truly entitled will not be affected greatly. You may also be entitled to Carer's Allowance if you earn below £100 per week but be careful of your figures as they are very hot on pulling you up if you make a mistake, and you will have to repay any money you were not entitled to.
Also check out what you may be entitled to in the way of equipment - if your child is still having problems walking long distances yet they are getting too large for the average buggy, you are entitled to a larger specialised buggy. I wish I had been in this country while my daughter was small as we got through about 6 buggies as she was a late walker and still needed the wheels until she was about 6 years old for longer walks and days out.
If your child is still in nappies after the 'normal' age for toilet training, check with your health visitor or doctor's surgery as you may be entitled to free nappies.
It is definitely worth taking up any benefits that you are able to - you will find that new and unexpected expenses rear their heads along the way and anything that relieves the pressure, no matter how small, can't be bad.
If your child has a lot of trouble getting about, you may also be able to be a part of the Motability scheme which provides a 'free' car - although we have not been able to access this.
Sunday 20 June 2010
Entrance Fees
If you are taking your family for a day out to a zoo, museum, or exhibiton etc., do check to see if there are special concessions on the entrance fees. Many places not only have a reduced fee for disabled people, but allow one - sometimes two - carers in for free.
If you can, look it up on the internet first but don't be afraid to ask at the ticket desk - they can only say no! In the past we have saved ourselves £19 getting into a Da Vinci exhibition completely free; also at most zoos/wildlife attractions a carer will get in for free. This even applies abroad - just don't be afraid to ask!
If you can, look it up on the internet first but don't be afraid to ask at the ticket desk - they can only say no! In the past we have saved ourselves £19 getting into a Da Vinci exhibition completely free; also at most zoos/wildlife attractions a carer will get in for free. This even applies abroad - just don't be afraid to ask!
End of School Year Transitions
Now is the time of year when changes are on the horizon and have to be introduced carefully and thoroughly. September will see children in new classes and new schools and it can be a confusing and worrying time for all.
From the school side of things, what we try and do is ensure the annual review meeting comes towards the end of the school year if the child is moving up to junior school in order for the new teacher and SENCO to attend and let the parents know what their intentions are for providing for the child. The existing staff can also pass on what they know and what information the new school will need in order to makes the child's transition as smooth as possible.
It is helpful for the current LSA/teacher to write a short 'crib-sheet' for their successor with tips on how to help this particular child learn, behave and settle in. If you have worked with a child consistently for several years, you will have definitely learned a few tricks and strategies that will be invaluable to the person taking over.
Generally, children will have just one introductory visit to their new school/class, but in the case of a child with Down's Syndrome, it is advantageous to have at least two or three. They should be shown their new classroom and teacher/LSA and told all sorts of encouraging things about what they will get up to in the coming year.
If possible, get photographs of the outside of the school, the new classroom, teacher, LSA and anything else that might be relevant in the new setting and make a simple book for the child to take home and look at over the holidays. Write simple sentences underneath each photograph e.g. "This is Mrs......., she is my new teacher" Encourage the parents to make it a regular activity over the holidays to look at this book and coach the child as to what they can expect in September. This should be done for the transition between pre-school and infants too, and even between juniors and secondary.
We always worry that the child will miss the current LSA when they move on to a new school, particularly if they have been with the same person for a number of years. However, while it will be a challenge for the child to come to terms with the new surroundings and people, I doubt very much that they will miss the old school as much as we adults expect them to. Quite frankly, they have too many other exciting things to think about! It is a very good idea to try an ensure that their best friends are put in the same class with them - this should be emphasized at the review meeting as having a friendly familiar face in the same class is very important when making a transition between schools. When my daughter went to secondary school, her best friend unfortunately went to a different school and for some reason none of her other choices were in the same class. It made life a little difficult to begin with, although she soon made new friends.
If possible, parents should ensure that their child is actually present for first and last days of school. I know it is frustrating to have to pay extra for holidays during the school holidays, but if you have a child with Down's Syndrome you also have to consider how detrimental it is for them to turn up at a new school a few days after everyone else, when the other children have had a chance to get acclimatised, make new friends and learn the new routines. It makes it even more confusing than it would be if they started at the same time as everyone else.
If everyone does their job, both parents and school, these transitions should go smoothly with as little upset to the child as possible.
From the school side of things, what we try and do is ensure the annual review meeting comes towards the end of the school year if the child is moving up to junior school in order for the new teacher and SENCO to attend and let the parents know what their intentions are for providing for the child. The existing staff can also pass on what they know and what information the new school will need in order to makes the child's transition as smooth as possible.
It is helpful for the current LSA/teacher to write a short 'crib-sheet' for their successor with tips on how to help this particular child learn, behave and settle in. If you have worked with a child consistently for several years, you will have definitely learned a few tricks and strategies that will be invaluable to the person taking over.
Generally, children will have just one introductory visit to their new school/class, but in the case of a child with Down's Syndrome, it is advantageous to have at least two or three. They should be shown their new classroom and teacher/LSA and told all sorts of encouraging things about what they will get up to in the coming year.
If possible, get photographs of the outside of the school, the new classroom, teacher, LSA and anything else that might be relevant in the new setting and make a simple book for the child to take home and look at over the holidays. Write simple sentences underneath each photograph e.g. "This is Mrs......., she is my new teacher" Encourage the parents to make it a regular activity over the holidays to look at this book and coach the child as to what they can expect in September. This should be done for the transition between pre-school and infants too, and even between juniors and secondary.
We always worry that the child will miss the current LSA when they move on to a new school, particularly if they have been with the same person for a number of years. However, while it will be a challenge for the child to come to terms with the new surroundings and people, I doubt very much that they will miss the old school as much as we adults expect them to. Quite frankly, they have too many other exciting things to think about! It is a very good idea to try an ensure that their best friends are put in the same class with them - this should be emphasized at the review meeting as having a friendly familiar face in the same class is very important when making a transition between schools. When my daughter went to secondary school, her best friend unfortunately went to a different school and for some reason none of her other choices were in the same class. It made life a little difficult to begin with, although she soon made new friends.
If possible, parents should ensure that their child is actually present for first and last days of school. I know it is frustrating to have to pay extra for holidays during the school holidays, but if you have a child with Down's Syndrome you also have to consider how detrimental it is for them to turn up at a new school a few days after everyone else, when the other children have had a chance to get acclimatised, make new friends and learn the new routines. It makes it even more confusing than it would be if they started at the same time as everyone else.
If everyone does their job, both parents and school, these transitions should go smoothly with as little upset to the child as possible.
Wednesday 9 June 2010
Support Groups
I expect some of you are like I used to be and quite wary of the phrase 'support group'. However, when my daughter was tiny I lived in Athens, Greece, and the amount of help available for the parents of any special needs child was minimal to say the least. I don't remember who it was that gave me the phone number of a support group aimed at all parents of children with special needs, but I am forever grateful to them.
In this country you will probably get plenty of professionals available to help you, but you also need to have that bit of emotional support from people in similar situations. Trying to deal with what has happened to you and it's repercussions can be totally daunting and if you are on your own, it can feel insurmountable and hopeless at times. To be able to get together with other parents and share your experiences and what you are learning along the way really helps to put your own life into perspective.
I think the trick is to take out of a support group what you need and be aware of what does not apply to you and leave that behind. I found it such a relief to talk to other parents who were experiencing the same ups and downs that I was. I also made some very good friends, a couple of which I still keep in touch with even though we are now miles apart. I even ended up running a small subsidiary support group from my home for a couple of years, and to be honest it was pretty raucous at times, but we knew that if we were having difficulties there was always someone to call on for a shoulder to cry on or some practical advice and help.
Joining a support group can also be an incredible source of information. I am amazed at how much information does not get passed on to the new parents of a child with Down's sometimes - one of the reasons I started this blog. So much of it you end up discovering along the way, but to be able to get in contact with parents of older children who have been where you are today can be invaluable. I wish that twenty-two years ago when so-called educated professionals were telling me that my daughter would be a vegetable, unable to do anything much and would ruin my life that I had had someone to tell me from their own experience that she would be capable of going to mainstream school, even college, and fit into society very nicely, thank you! When things are at their bleakest, this is what you really need - hope.
So my advice is to try a support group - there are plenty around, and if you don't know where to start, get in touch with the Down's Syndrome Association or even your health visitor or doctor's surgery. In our area (North Hampshire/Surrey) there is the Stepping Stones group who meet up in Hartley Whitney once a month.
In this country you will probably get plenty of professionals available to help you, but you also need to have that bit of emotional support from people in similar situations. Trying to deal with what has happened to you and it's repercussions can be totally daunting and if you are on your own, it can feel insurmountable and hopeless at times. To be able to get together with other parents and share your experiences and what you are learning along the way really helps to put your own life into perspective.
I think the trick is to take out of a support group what you need and be aware of what does not apply to you and leave that behind. I found it such a relief to talk to other parents who were experiencing the same ups and downs that I was. I also made some very good friends, a couple of which I still keep in touch with even though we are now miles apart. I even ended up running a small subsidiary support group from my home for a couple of years, and to be honest it was pretty raucous at times, but we knew that if we were having difficulties there was always someone to call on for a shoulder to cry on or some practical advice and help.
Joining a support group can also be an incredible source of information. I am amazed at how much information does not get passed on to the new parents of a child with Down's sometimes - one of the reasons I started this blog. So much of it you end up discovering along the way, but to be able to get in contact with parents of older children who have been where you are today can be invaluable. I wish that twenty-two years ago when so-called educated professionals were telling me that my daughter would be a vegetable, unable to do anything much and would ruin my life that I had had someone to tell me from their own experience that she would be capable of going to mainstream school, even college, and fit into society very nicely, thank you! When things are at their bleakest, this is what you really need - hope.
So my advice is to try a support group - there are plenty around, and if you don't know where to start, get in touch with the Down's Syndrome Association or even your health visitor or doctor's surgery. In our area (North Hampshire/Surrey) there is the Stepping Stones group who meet up in Hartley Whitney once a month.
Thursday 3 June 2010
Mathematics
This is a tricky subject for children with Down's Syndrome - some are better at it than others, but it is quite a hard subject to teach.
Initially, number rhymes and songs are the best way to start the counting process. It may well take quite a few years before the child can count to 10, and even then it may not be consistent. Try and combine the rhymes with the written numbers to get through the connection between the symbol and the number.
Visual learning is the route to take - if you are counting, have something to count in front of you otherwise it is just meaningless words. Make sure each object is touched when counted and try to have objects in a line rather than jumbled. When teaching the written number, draw a matching number of dots next to it to reinforce it's meaning.
Numicon is a good tool with which to introduce counting. This consists of flat plastic interlocking shapes with the relevant number of holes in each piece. Each number has a different colour which remains the same. There are plastic pegs which fit into the holes for added visual impact. Depending on which kit you buy or have access to, there will be a board with raise circles over which the plastic shapes fit. There will also be a set of work sheets. The brilliant idea with Numicon is that each number has a shape to how the holes are arranged and if you interlock, say, three and one, they make the shape of four - genius! You can also get the child to draw round the holes to get that number on to paper in the same shape - also when drawing your dots, put them in the Numicon shapes initially to once again reinforce learning.
You can even go double-decker using the ten shape & pegs to then make...twenty, or thirty! Not that I have ever had cause to get that far as I only teach infant school age children!
Do NOT rely solely on Numicon however or you may be making a rod for your own back. The first child I taught with this system then became stuck in the thinking that only if numbers were in the right shape were they actually numbers! Combine the use of Numicon with counters, plastic toys, sweets, whatever you have to hand and introduce the idea that no matter what pattern these objects form on the table, they still represent the same number.
Addition - once again, visual learning is the key. Start off with two objects, put one on one side of the table, the other the other side and get the child to count them separately. Then bring them together and get the child to count them again, emphasising that you are counting them together. This can slowly be built up to more and more objects and combinations with which to make sums. Reinforce these sums by writing down the symbols as you teach so that you are getting across the whole concept.
Subtraction - the same method in reverse. Have a bunch of objects (start with only two though!), get the child to count them, then take one away and count them again. Over time this can be expanded upon.
Multiplication - tough! Don't expect this concept to be grasped that quickly - again, use objects in groups to represent what you are talking about. Sharing the objects between you and your child introduces the idea of numbers being in twos - also handy for teaching odd and even numbers.
Odd and Even numbers - you are probably best off teaching these by rote up to 10 to start with. It is quite an abstract concept when you think about it.
Money - start with pennies, pointing out the numbers on the coins. Use coins as above for adding and subtraction, playing shops etc. Slowly introduce 2p coins, then 5p, all the time stressing the fact that each coin has a different number on it and that this is what you are looking at rather than the actual number of coins. I would point out that even after mainstream school and college, my daughter still doesn't really understand the workings of money - she would willingly pay £5 for a sweet or 2p for a car.
Telling the time - also tricky! No point in starting this until the child can count up to 12 and understand what the numbers mean. Then begin with a toy clock and only the 'o'clock' times. Once these are secure in the child's mind, then move on to half past. In my experience, it was easier to buy my daughter a digital watch with the numbers written clearly until such time as she had grasped the clock face method.
Weights and measures - keep it visual. If you are weighing something, let the child hold it and see if it is heavy or light. Measuring - measure the child's height, things around the class, explaining the meaning of the numbers on a ruler or tape measure. You will have far better results using visual and hands-on methods than trying to get your message across on paper.
Above all, don't give up - this will be a lengthy process for some children but eventually you will get there. I have found in the past that the children I worked with can count to 10 confidently and do simple addition and subtraction by the time they are at the end of Year two. This is NOT a definite - each child is different.
Initially, number rhymes and songs are the best way to start the counting process. It may well take quite a few years before the child can count to 10, and even then it may not be consistent. Try and combine the rhymes with the written numbers to get through the connection between the symbol and the number.
Visual learning is the route to take - if you are counting, have something to count in front of you otherwise it is just meaningless words. Make sure each object is touched when counted and try to have objects in a line rather than jumbled. When teaching the written number, draw a matching number of dots next to it to reinforce it's meaning.
Numicon is a good tool with which to introduce counting. This consists of flat plastic interlocking shapes with the relevant number of holes in each piece. Each number has a different colour which remains the same. There are plastic pegs which fit into the holes for added visual impact. Depending on which kit you buy or have access to, there will be a board with raise circles over which the plastic shapes fit. There will also be a set of work sheets. The brilliant idea with Numicon is that each number has a shape to how the holes are arranged and if you interlock, say, three and one, they make the shape of four - genius! You can also get the child to draw round the holes to get that number on to paper in the same shape - also when drawing your dots, put them in the Numicon shapes initially to once again reinforce learning.
You can even go double-decker using the ten shape & pegs to then make...twenty, or thirty! Not that I have ever had cause to get that far as I only teach infant school age children!
Do NOT rely solely on Numicon however or you may be making a rod for your own back. The first child I taught with this system then became stuck in the thinking that only if numbers were in the right shape were they actually numbers! Combine the use of Numicon with counters, plastic toys, sweets, whatever you have to hand and introduce the idea that no matter what pattern these objects form on the table, they still represent the same number.
Addition - once again, visual learning is the key. Start off with two objects, put one on one side of the table, the other the other side and get the child to count them separately. Then bring them together and get the child to count them again, emphasising that you are counting them together. This can slowly be built up to more and more objects and combinations with which to make sums. Reinforce these sums by writing down the symbols as you teach so that you are getting across the whole concept.
Subtraction - the same method in reverse. Have a bunch of objects (start with only two though!), get the child to count them, then take one away and count them again. Over time this can be expanded upon.
Multiplication - tough! Don't expect this concept to be grasped that quickly - again, use objects in groups to represent what you are talking about. Sharing the objects between you and your child introduces the idea of numbers being in twos - also handy for teaching odd and even numbers.
Odd and Even numbers - you are probably best off teaching these by rote up to 10 to start with. It is quite an abstract concept when you think about it.
Money - start with pennies, pointing out the numbers on the coins. Use coins as above for adding and subtraction, playing shops etc. Slowly introduce 2p coins, then 5p, all the time stressing the fact that each coin has a different number on it and that this is what you are looking at rather than the actual number of coins. I would point out that even after mainstream school and college, my daughter still doesn't really understand the workings of money - she would willingly pay £5 for a sweet or 2p for a car.
Telling the time - also tricky! No point in starting this until the child can count up to 12 and understand what the numbers mean. Then begin with a toy clock and only the 'o'clock' times. Once these are secure in the child's mind, then move on to half past. In my experience, it was easier to buy my daughter a digital watch with the numbers written clearly until such time as she had grasped the clock face method.
Weights and measures - keep it visual. If you are weighing something, let the child hold it and see if it is heavy or light. Measuring - measure the child's height, things around the class, explaining the meaning of the numbers on a ruler or tape measure. You will have far better results using visual and hands-on methods than trying to get your message across on paper.
Above all, don't give up - this will be a lengthy process for some children but eventually you will get there. I have found in the past that the children I worked with can count to 10 confidently and do simple addition and subtraction by the time they are at the end of Year two. This is NOT a definite - each child is different.
Periods
I can only contribute what I know from personal experience here. My daughter began her periods very early on, while she was still 11 years old. I had begun to talk to her about what would happen in the future but it was still quite a shock for her.
However, it didn't cause as many problems as I thought. I had made sure that whenever I had my own period I did not hide what was happening. If she happened to walk in on me in the bathroom, I would explain what I was doing and why and the procedure was quite familiar to her. So when it was her turn, it took a couple of months for her to come to terms with it, but after that she was able to keep herself clean and change her sanitary towel by herself very well. Of course there have been a few mishaps along the way, but that happens to all of us!
She does experience quite a bit of pain however, and the trick here is to get in fast with the pain relief. I give her soluble paracetemol, which began as she used to have difficulty swallowing tablets, but now has the advantage of acting that little bit faster. Occasionally I have been called from school/college etc. to say that she is really suffering and then the best thing is to bring her home, sit her down with a hot water bottle and a cup of tea in front of the tv!
So I would recommend letting your daughter see the routine involved with personal hygiene during a period long before it is time for her to start her own - no, you don't yell from the bathroom 'hey, come and have a look at this!', but if the situation arises, don't hide it. I have found over the years that if an activity is familiar to my daughter, she is more than willing to do it by herself and emulate what she has seen. This is probably why she can work the DVD player better than I can.........
However, it didn't cause as many problems as I thought. I had made sure that whenever I had my own period I did not hide what was happening. If she happened to walk in on me in the bathroom, I would explain what I was doing and why and the procedure was quite familiar to her. So when it was her turn, it took a couple of months for her to come to terms with it, but after that she was able to keep herself clean and change her sanitary towel by herself very well. Of course there have been a few mishaps along the way, but that happens to all of us!
She does experience quite a bit of pain however, and the trick here is to get in fast with the pain relief. I give her soluble paracetemol, which began as she used to have difficulty swallowing tablets, but now has the advantage of acting that little bit faster. Occasionally I have been called from school/college etc. to say that she is really suffering and then the best thing is to bring her home, sit her down with a hot water bottle and a cup of tea in front of the tv!
So I would recommend letting your daughter see the routine involved with personal hygiene during a period long before it is time for her to start her own - no, you don't yell from the bathroom 'hey, come and have a look at this!', but if the situation arises, don't hide it. I have found over the years that if an activity is familiar to my daughter, she is more than willing to do it by herself and emulate what she has seen. This is probably why she can work the DVD player better than I can.........
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