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!
Sunday, 18 July 2010
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!
Monday, 28 June 2010
The Benefits of Animals
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!
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!
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.
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