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New To The Board! Help With Statementing

49 replies

chinchi · 02/11/2010 14:33

Hello everyone. Im new to this board, and was hoping that someone could please help me with the Statementing process for DS?

He turned 3 in August, and has recently started pre-school. We had a diagnosis of CP last year, mid-moderate. The school's inclusion manager and SENCO are wanting to start the process to get a Statement for him, and I have been to the IPSEA website and downloaded their template letter to request this.

He has only been in preschool for 4 weeks now, but the nursery staff and even the headmistress have commented on the amazing progress he is making. He has speech delay, but this is coming on fantastically. He wears an AFO splint on his left leg, and a heel support on his right foot, but is fully mobile.

Both SALT and DS's consultant say that they believe he doesn't meet the criteria for funding as the CP is mild. I know that is a seperate issue, but how can I get across that I want him to be assesed for a statement, when he is improving all the time?

The inclusion manager is really pushing for it, and because I want him to go to that primary school next year, I am all in favour of getting a statement in place. I just don't know how I am expected to word my argument?

He has an IEP, and has already met some of the aims on there- starting nursery was the main one as they thought they would have to wait for funding for a classroom assistant, yet they took him on a staggered entry basis, and he is now attending 5 mornings a week with no extra assitance.

SALT dont want to see us again until March 2011, and physio hasnt requested another appointment, although she is going into nursery next week to see DS.

The inclusion manager said my letter would be submitted with their request, so I want to put forward a good case, but not sure how?

Sorry for waffling, but I really hope somebody can help! Thankyou!

OP posts:
chinchi · 03/11/2010 09:01

I think Im starting to realise what I should be doing!

OP posts:
justabouttosellakidney · 03/11/2010 09:21

This reply has been deleted

Message withdrawn at poster's request.

chatee · 03/11/2010 09:22

I can certainly add that he has fallen on a numbet of occasions and I have been called into nursery twice to change him when he has soiled his nappy as apparently they dont have the provision of staff to change him themselves.

this in itself is a sign that your ds will need extra assistance over and above the needs of his peers-you being called in to do this is also highly unprofessional and could be seen as breaching DDA.

i am a mum to an older child(still primary) with cp(initially cp spastic diplegia-but now spastic quad)and we received help at the pre school stage but when going into school the LA tried to reduce hours-we fought and got them back and am glad we did as lots of little things that weren't so obvious at 4 years of age have come to light and by having a statement these are all acknowledeged at least yearly at the annual review.
don't get me wrong - it's not perfect and(with the spending cuts) it is going to become harder so you really do need to get the statement NOW as once you have one it is harder to take it away then to keep having to apply.
Look at his peers -pick up every little diference-am soory to say but the differences are more than likely to get slightly bigger than him be able to catch up.
start with
speech -does he have speech therapy,how often? you want it identified as a need in part 2 and provision specified in part 3
joining in conversations with his peers-struggle to be understood-frustration and emotional problems related to this.
mobility- he is more likely to fall than his peers, can not join in running games,large apparaturs without help.
self help skills- toileting, wearing fancy dress clothes during role play without help.putting afos on and shoes on without help.
that's just a brief starting point-please do not be fobbed off by anyone-you are the best person that knows your son and the only one that will fight for his needs- no one else!!

Hope this helps and I've not upset you too much!

chinchi · 03/11/2010 09:54

Not upset at all Chatee :) I have been so used to praising his efforts the past three years, I am genuinely struggle to criticise! Will have another attempt as I want to hand a copy to the inclusion manager tomorrow as a woman from LEA is visiting DS in nursery on Friday so at least the ball is rolling.

OP posts:
chatee · 03/11/2010 10:06

I know what you mean about the praising, if it helps try to think (when completing forms/attending meetings)as your ds as a 'third person' ie not your happy achieving son but his cp persona of a child not achieving the same as his peers

it helps me because we are really only the people that are emotionally involved -most professionals appear to be(until the mention of them providing a service which will cost them money!) but they can go home at 5pm and not worry about the future!

i will pop back tonight if you wish to think today about any questions and i'M SURE THAT all the statementing regulars will be glad to help you out.
Good luck x

Lougle · 03/11/2010 11:31

ONLY READ IF YOU ARE PREPARED TO HEAR A NEGATIVE REPORT OF YOUR DS!!
(I am sure he is wonderful, but wonderful doesn't get a Statement Wink)

Report Detailing DSDS's Difficulties

Summary:
Medical Needs: -x was premature, born at 29+5 weeks. Neonatal haemorrhage leading to diagnosis of Mild-Moderate Cerebral Palsy, with left-sided hemiplegia.
-Weight below average for age due to feeding difficulties.

Gross Motor Needs: - Equinus posturing of left ankle with tight heel cord. AFO splints for both legs. Wobbly walker with hobbling gait.

Fine Motor needs: -Left hemiplegia with fisting of left hand. Tendency to rely on right side for fine motor tasks.

Speech and Language: Very unclear speech which is hard to understand even by close family. Expressive speech and Receptive language delay. Uses Makaton.

Personal care: Difficulties with toileting due to physical impairment. Assistance needed. Full assistance needed with dressing and undressing.

Emotional and behavioural needs: Easily frustrated and displays anger when frustrated. Sensitive to emotional upsets of others.

Other considerations: Currently in receipt of DLA at Middle Rate for care, and High Rate for mobility. Blue badge Holder.

? DS was born at 29+5 gestation by emergency caesarean at y, weighing 1.49kgs. He was initially ventilated for just less than 24 hours, followed by CPAP for a further 5 days. He spent a total of 6 weeks in Special Care. He was initially nasogastric tube fed, . DS had an ultrasound scan when he was four days old, showing a small right germinal matrix haemorrhage. A repeat scan a week later showed echogenic flares within the right parenchymal region and sequential scans showed a cystic change in the same region.

DS had a MRI scan of the brain in October 2009 which did not show any overt focal abnormality. He had a diagnosis in July 2009 of mild-moderate cerebral palsy, and displays physical difficulties that are associated with left-sided hemiplegia. DS receives middle-rate care and high rate mobility Disability Living Allowance. He is also part of the Blue Badge Scheme.

? Initial concerns arose when at around 8 months, DS was not able to sit unaided, and he had fisting of his left hand. Soon afterwards, it was noted that he developed equinus posturing of his left ankle with a tight heel cord. Throughout the course of the year, DS continued to adopt this posture, and it became more prominent especially when he was weight bearing. Physiotherapy and Orthotic Services were involved. He was supplied with AFO splints for both legs. Botulinum Toxin has been discussed more recently and it was felt that he should be given time to adapt to the latest AFO splint and heel support he was given, with a view of DS being referred to the Botox Clinic at his review appointment on 11 November. DS learned to sit at 10 months, but did not crawl until he was 15 months old, and finally learnt to walk at 2 years and 4 months.

? DS He is very reluctant to try foods that he does not recognise. It has been suggested that the occupational therapist introduces messy play with DS, to introduce him to various feelings as it is thought he has a sensitivity to certain textures.

?DS requires an AFO splint on his left foot, and a heel support inside his right shoe to enable him to walk effectively. Despite the splint, DS still attempts to walk on his tip-toes, causing him to 'hobble' and have difficulties with his balance. As a result of his difficulties with walking, DS is a blue badge holder. He is unable to run or jump. The nursery which DS attends is a busy setting, with children constantly moving around. Although DSDS does not shy away from trying to be mobile, he is hindered when trying to navigate his way around as his muscle tone increases when he is active. Increased muscle tone has also been noted in his left arm when he is active or excited,

? DS's speech and language skills are delayed in comparison to other children of his age. SALT have been involved since DS was around 15 months old. He uses both Makaton and words in order to communicate, but his speech is very unclear and often cannot be understood by people who do not know him well. He uses around 15-20 words, recognising most everyday objects. DS will answer simple questions, but struggles to initiate conversation. Close family members often have difficulty understanding what DS is saying, and so it is a big concern that in a setting where DS is still new, he is not able to express his needs. He does not have one-to-one help in which someone can get to know DS well enough to ensure that his needs are met. DS cannot structure questions, and can only form 3-4 word sentences. He understands key words in a question or instruction and . DS . His sight and hearing have been checked and no problems have been reported.

? DSDS lacks the ability to complete many basic personal tasks that should be expected of him at this age. Due to the stiffness in his left arm and hand, he cannot put on his own shoes, fasten his own coat, or get dressed without support. The potty training process is proving difficult as he is unable to pull down his trousers in time in order to prevent an accident. < Remove this next sentence>He manages tasks such as washing, using a fork and spoon, and putting on a hat, but it is the skills that are needed most in a school environment that he lacks.

? DS is a sensitive child, and quite emotional at times if he takes a fall or sees somebody else upset. He often becomes frustrated when he can?t make his feelings understood through speech, and can display this through anger. He is also very anxious when in new surroundings or situations.

? DS < take all of this out:has two younger sisters and has very good relationships with both. DS is almost 2 years old and so her DS are able to play together and seek each other for company. DS is 3 months old, and DSDS is very protective of her, realising that she needs a lot of attention. His paternal Grandparents live in Turkey, but has frequent contact with them through visits and over the Internet using Skype. He has only recently been able to develop on his social skills through starting nursery as he was not previously in a childcare setting. His maternal Grandparents have passed away, and he has no Aunties or Uncles living in the UK. He > has delayed development of social skills. He shies away from adults that he does not know, often showing embarrassment when they try to communicate with him. He has a few friends out of nursery of a similar age, and can find it difficult to engage in play as he cannot communicate well enough to initiate a game or role play situation. He will play alongside other children, but does not tend to play with other children.

?

? I believe that DS needs the help of a classroom assistant who would work with him on a daily basis. This person would be able to learn the way that DS communicates and understand his needs and emotions. DS needs support with the most basic of tasks such as dressing and help when using the toilet. He would most certainly struggle when in primary school without this help. He would be unable to dress and undress himself for P.E. and to a certain extent, be unable to participate due to his physical disabilities. As DS uses both Makaton and speech, he needs 1:1 interaction with somebody who can learn what he is contributing to the class.

That's what I would write Smile

justabouttosellakidney · 03/11/2010 11:39

This reply has been deleted

Message withdrawn at poster's request.

chinchi · 03/11/2010 11:53

OK, I have tweaked, deleted and added! I have left his name in as I know I left it in accidentally in the first post. I didnt put itin originally as I thought it wasn't allowed, but if it s a case of personal choice, then I dont mind it being in!

I have kept the first two sections about his birth and initial care the same as nobody said any different, so the letter is altered from there onwards.

Justabouttosellakidney- I may need some help with wording a strong final paragraph about knowing my rights of taking them to a tribunal if needed- please?

? Kerem is a faddy eater, and is very reluctant to try foods that he does not recognise. It has been suggested that the occupational therapist introduces messy play with Kerem, to introduce him to various feelings as it is thought he has sensitivity to certain textures. His weight is below average for a child of his age.

? Kerem is able to walk without the need of physical support. He wears an AFO splint on his left foot, and uses a heel support inside his right shoe. Despite the splint, Kerem still attempts to walk on his tip-toes, causing him to 'hobble' and have difficulties with his balance. Due to the time spent on his feet in nursery, he quite often displays discomfort at the end of the session. Kerem has monthly physiotherapy sessions at home, lasting around 90 minutes each time. This is also parterned with the orthotic clinic who provided him with his heel support, AFO splint, and also a splint that he must wear throughout the night. He is reviewed on a three monthly basis.

? He is unable to run or jump. The nursery which Kerem attends is a busy setting, with children constantly moving around. Kerem will shy away from being mobile as he has awareness that he may be knocked over by another child. He is hindered when trying to navigate his way around as his muscle tone increases when he is active. He cannot participate in games with his peers as he cannot run, cannot climb, or cannot use large apparatus without support. He falls regularly both inside the nursery and outside and as a result has suffered terrible bruising to both legs. He more recently suffered a blow to the head as he used a large abacus to pull himself up from sitting, and this subsequently fell on him, knocking him back onto the floor and banging his head.

? Increased muscle tone has also been noted in his left arm when he is active or excited. He shows difficulty in playing with basic equipment such as using a rolling pin to play with play-doh.

? Kerem lacks the ability to complete many basic personal tasks that should be expected of him at this age. Due to the stiffness in his left arm and hand, he cannot put on his own shoes, fasten his own coat, or get dressed without support. Kerem is not potty trained as he is unable to pull down his trousers in time in order to prevent an accident.
? Kerem's speech and language skills are significantly delayed in comparison to other children of his age. SALT have been involved since Kerem was around 15 months old. He uses both Makaton and words in order to communicate, but his speech is very unclear and often cannot be understood by people who do not know him well. He only uses around 15-20 words and cannot initiate conversation. He also cannot structure questions. Close family members have difficulty understanding what Kerem is saying, and so it is a big concern that in a setting where Kerem is still new, he is not able to express his needs. This is emotionally challenging for Kerem and upsetting when he is unable to be understood by others. Most importantly, he is unable to form friendships. He does not have one-to-one help in which someone can get to know Kerem well enough to ensure that his needs are met. He has monthly speech and language appointments, lasting 90 minutes each time.

? He is a sensitive child, and becomes emotional if he takes a fall or sees somebody else upset. He becomes frustrated when he can?t make his feelings understood through speech, and can display this through anger. He is also very anxious when in new surroundings or situations, and this has been visible in nursery as he has been starting the session later than the other children so that the atmosphere would be calm and settled when he arrived and the staff could focus on him whilst the other children started activities.

? There is still a lot of work that needs to be done by professionals in order for Kerem to make any progress, and I feel that the differences between him and his peers will only widen rather than improve. Help is currently available through the health professionals involved with Kerem, but the support needs to be present at nursery, and subsequently school, once he starts in September 2011.

? Kerem is at a significant disadvantage to the other children in the nursery setting. I have been called in twice to change Kerem?s nappy when he has soiled himself as the nursery does not have the provision of staff to change him themselves. It is distressing for him to be left in a soiled nappy for any amount of time until I am able to reach the nursery, and this shouldn?t been expected of him. He needs somebody present to help him with his toileting needs as a basic human right.

? He is unable to interact with his peers as he cannot initiate conversation and cannot make himself clear to others. This means he is singled out as an individual as there is nobody present who can spend time with Kerem to improve his communication skills on a 1:1 basis. He is therefore unable to develop his social skills- something that is paramount in an education setting.

OP posts:
justabouttosellakidney · 03/11/2010 11:57

This reply has been deleted

Message withdrawn at poster's request.

Lougle · 03/11/2010 12:06

Although, if you want to be really fancy, you could change 'I have the right of appeal to a SENDIST tribunal' to '.... First Tier Tribunal (Special Educational Needs and Disability)' because SENDIST is no more....

chinchi · 03/11/2010 12:25

Lougle thankyou so much for that! That is very, very kind of you and I really appreciate it. There are so many helpful people on here, so a huge thankyou to you all. I am finally getting somewhere thanks to your help!

Will come back once Ive got kids asleep and I can focus more :)

OP posts:
chinchi · 03/11/2010 12:30

Forgot to say x-posts with Lougle and my edited version.

OP posts:
StarkAndWitchesWillFindYou · 03/11/2010 12:34

There is still a lot of work that needs to be done by professionals in order for Kerem to make any progress, and I feel that the differences between him and his peers will only widen rather than improve. Help is currently available through the health professionals involved with Kerem, but the support needs to be present at nursery, and subsequently school, once he starts in September 2011

No, you're feelings are not important. Either they will widen, or they won't! Smile

But overall, much stronger.

chinchi · 03/11/2010 12:51

Am I ok to add the bits I wrote about him falling and the issues with soiled nappies? Did I word them well enough?

OP posts:
justabouttosellakidney · 03/11/2010 13:00

This reply has been deleted

Message withdrawn at poster's request.

StarkAndWitchesWillFindYou · 03/11/2010 13:08

Yes, but I'd add to this too:

Kerem is not potty trained as he is unable to pull down his trousers in time. He requires a high level of support to prevent accidents and to help him with his confidence in this area, as well as his dignity.

chinchi · 03/11/2010 14:17

Here is the latest draft, including what Lougle was so kind to write, and keeping in some parts I had re-written myself. Again, please do comment and criticise as appropriate! I couldn't have done it without the help of you all!

Report Detailing Kerem's Difficulties

Summary:

Medical Needs: Kerem was premature, born at 29+5 weeks. Neonatal haemorrhage leading to diagnosis of Mild-Moderate Cerebral Palsy, with left-sided hemiplegia. Weight below average for age due to feeding difficulties.

Gross Motor Needs: Equinus posturing of left ankle with tight heel cord. AFO splints and heel support provided for both legs. Unstable walker with hobbling gait.

Fine Motor Needs: Left hemiplegia with fisting of left hand. Tendency to rely on right side for fine motor tasks.

Speech and Language: Very unclear speech which is hard to understand even by close family. Expressive speech and Receptive language delay. Uses Makaton.

Personal Care: Difficulties with toileting due to physical impairment. Assistance needed. Full assistance needed with dressing and undressing.

Emotional and Behavioural Needs: Easily frustrated and displays anger when frustrated. Sensitive to emotional upsets of others.

Other Considerations: Currently in receipt of DLA at Middle Rate for care, and High Rate for mobility. Blue Badge Holder.

? Kerem was born at 29+5 gestation by emergency caesarean at xx Hospital, xx, weighing 1.49kgs. He was initially ventilated for just less than 24 hours, followed by CPAP for a further 5 days. He spent a total of 6 weeks in Special Care. He was initially nasogastric tube fed, before moving onto oral feeding. Kerem had an ultrasound scan when he was four days old, showing a small right germinal matrix haemorrhage. A repeat scan a week later showed echogenic flares within the right parenchymal region and sequential scans showed a cystic change in the same region.

? Kerem had a MRI scan of the brain in October 2009 which did not show any overt focal abnormality. He had a diagnosis in July 2009 of mild-moderate cerebral palsy, and displays physical difficulties that are consistent with left-sided hemiplegia. Kerem receives middle-rate care and high rate mobility Disability Living Allowance. He is also part of the Blue Badge Scheme.

? Initial concerns arose when at around 8 months, Kerem was not able to sit unaided, and he had fisting of his left hand. Soon afterwards, it was noted that he developed equinus posturing of his left ankle with a tight heel cord. Throughout the course of the year, Kerem continued to adopt this posture, and it became more prominent especially when he was weight bearing. Physiotherapy and Orthotic Services were involved. He was supplied with AFO splints for both legs. Botulinum Toxin has been discussed more recently and it was felt that he should be given time to adapt to the latest AFO splint and heel support he has been given, with a view of Kerem being referred to the Botox Clinic at his review appointment on 11 November. Kerem learned to sit at 10 months, but did not crawl until he was 15 months old and finally learnt to walk at 2 years and 4 months.

? Kerem tires more easily than other children his age, and despite sleeping soundly at night, he requires a nap of 1-2 hours in the afternoon. Kerem is a faddy eater, and is very reluctant to try foods that he does not recognise. It has been suggested that the occupational therapist introduces messy play with Kerem, to introduce him to various feelings as it is thought he has sensitivity to certain textures. As a consequence, Kerem needs supervision at meal times to ensure he is eating, and that his weight, which is below average, does not fall.

? Kerem is able to walk without the need of physical support. He wears an AFO splint on his left foot, and uses a heel support inside his right shoe. Despite the splint, Kerem still attempts to walk on his tip-toes, causing him to 'hobble' and have difficulties with his balance. Due to the time spent on his feet in nursery, he quite often displays discomfort at the end of the session. Kerem has monthly physiotherapy sessions at home, lasting around 90 minutes each time. This is also parterned with the orthotics clinic who provided him with his heel support, AFO splint, and also a splint that he must wear throughout the night. He is reviewed on a three monthly basis.

? He is unable to run or jump. The nursery which Kerem attends is a busy setting, with children constantly moving around. Kerem will shy away from being mobile as he has awareness that he may be knocked over by another child. He is hindered when trying to navigate his way around as his muscle tone increases when he is active. He cannot participate in games with his peers as he cannot run, cannot climb, or cannot use large apparatus without support. He falls regularly both inside the nursery and outside and as a result has suffered terrible bruising to both legs. He more recently suffered a blow to the head as he used a large abacus to pull himself up from sitting, and this subsequently fell on him, knocking him back onto the floor and banging his head.

? Increased muscle tone has also been noted in his left arm when he is active or excited. He shows difficulty in playing with basic equipment such as using a rolling pin to play with play-doh. Although he can achieve simple tasks like throwing, pointing and holding a pen, the effort required is much more than that of other children his age

? Kerem lacks the ability to complete many basic personal tasks that should be expected of him at this age. Due to the stiffness in his left arm and hand, he cannot put on his own shoes, fasten his own coat, or get dressed without support. Kerem is not potty trained as he is unable to pull down his trousers in time in order to prevent an accident.

? Kerem's speech and language skills are significantly delayed in comparison to other children of his age. SALT have been involved since Kerem was around 15 months old. He uses both Makaton and words in order to communicate, but his speech is very unclear and often cannot be understood by people who do not know him well. He only uses around 15-20 words and cannot initiate conversation. He also cannot structure questions. Close family members have difficulty understanding what Kerem is saying, and so it is a big concern that in a setting where Kerem is still new, he is not able to express his needs. He only understands key words in a question or instruction and therefore has to guess what is expected of him. Kerem often relies on gestures to aid his understanding, which means that he require direct visual contact with the person giving instructions.

? Kerem has delayed development of social skills. He shies away from adults that he does not know, often showing embarrassment when they try to communicate with him. He knows a few children out of nursery of a similar age, and can find it difficult to engage in play as he cannot communicate well enough to initiate a game or role play situation. He will play alongside other children, but does not tend to play with other children.

? This is emotionally challenging for Kerem and upsetting when he is unable to be understood by others. Most importantly, he is unable to form friendships. He does not have one-to-one help in which someone can get to know Kerem well enough to ensure that his needs are met. He has monthly speech and language appointments, lasting 90 minutes each time.

? He is a sensitive child, and becomes emotional if he takes a fall or sees somebody else upset. He requires reassurance and assistance to understand that everything is OK, so that he can resume activities. He becomes frustrated when he can?t make his feelings understood through speech, and can display this through anger. He is also very anxious when in new surroundings or situations. Although he hasn?t had any 1:1 assistance at nursery, he has been starting the session later than the other children so that the atmosphere would be calm and settled when he arrived and the staff could focus on him whilst the other children started activities.

? Kerem?s cerebral palsy will need careful management to ensure that he is given opportunities to catch up developmentally to the abilities of children his age.Help is currently available through the health professionals involved with Kerem, but the support needs to be present at nursery, and subsequently school, once he starts in September 2011.

? Kerem is at a significant disadvantage to the other children in the nursery setting. I have been called in twice to change Kerem?s nappy when he has soiled himself as the nursery does not have the provision of staff to change him themselves. It is distressing for him to be left in a soiled nappy for any amount of time until I am able to reach the nursery, and this shouldn?t been expected of him. He requires a high level of support to prevent accidents and to help him with his confidence in this area, as well as his dignity.

? He is unable to interact with his peers as he cannot initiate conversation and cannot make himself clear to others. This means he is singled out as an individual as there is nobody present who can spend time with Kerem to improve his communication skills on a 1:1 basis. He is therefore unable to develop his social skills- something that is paramount in an education setting.

? Kerem?s physical difficulties present a health and safety concern as he is at risk from daily falls, trips and stumbles. As other children grow and develop, they get faster and more agile, and will expect Kerem to be able to avoid them. He is unable to move faster, and will therefore simply become an obstacle. He is at significant risk of injury in a playground without additional supervision, because he is not able to react fast enough to approaching children. He has already injured himself by using furniture to pull himself up from a sitting position and an accident report has been completed regarding a fall he suffered in the playground, from falling over whilst simply pushing along a pram. This could have been avoided, had the right supervision been in place.

? I believe that Kerem needs the help of a classroom assistant who would work with him on a daily basis. This person would be able to learn the way that Kerem communicates and understand his needs and emotions. Kerem needs support with the most basic of tasks such as dressing and help when using the toilet. He would most certainly struggle when in primary school without this help. He would be unable to dress and undress himself for P.E. and be unable to participate due to his physical disabilities. As Kerem uses both Makaton and speech, he needs 1:1 interaction with somebody who can learn what he is trying to contribute to the class.

? Without additional support from an early age, Kerem will simply fall further and further behind. If he is to have any hope of a future without extensive additional support, he needs the benefit of dedicated, targeted input now. His physical difficulties are wide-ranging and affect all activities of daily functioning within a classroom environment.

? On a whole-class level, I am confident that without the support of the Local Authority, other children will suffer the detrimental impact of Kerem?s needs as the whole-class support of the Teaching Assistant is diverted to meet his needs. He simply cannot function without additional support. A Statement of Educational Needs for Kerem would not only provide him with the provision he requires to be successful at school, but also reduce the impact of his disability on the rest of his class.

OP posts:
justabouttosellakidney · 03/11/2010 14:35

This reply has been deleted

Message withdrawn at poster's request.

StarkAndWitchesWillFindYou · 03/11/2010 14:39

Here is the latest draft, including what Lougle was so kind to write, and keeping in some parts I had re-written myself. Again, please do comment and criticise as appropriate! I couldn't have done it without the help of you all!

Report Detailing Kerem's Difficulties

Summary:

Medical Needs: Kerem was premature, born at 29+5 weeks. Neonatal haemorrhage leading to diagnosis of Mild-Moderate Cerebral Palsy, with left-sided hemiplegia. Weight below average for age due to feeding difficulties.

Gross Motor Needs: Equinus posturing of left ankle with tight heel cord. AFO splints and heel support provided for both legs. Unstable walker with hobbling gait.

Fine Motor Needs: Left hemiplegia with fisting of left hand. Tendency to rely on right side for fine motor tasks.

Speech and Language: Very unclear speech which is hard to understand even by close family. Expressive speech and Receptive language delay. Uses Makaton.

Personal Care: Difficulties with toileting due to physical impairment. Assistance needed. Full assistance needed with dressing and undressing.

Emotional and Behavioural Needs: Easily frustrated and displays anger when frustrated. Sensitive to emotional upsets of others.

Other Considerations: Currently in receipt of DLA at Middle Rate for care, and High Rate for mobility. Blue Badge Holder.

? Kerem was born at 29+5 gestation by emergency caesarean at xx Hospital, xx, weighing 1.49kgs. He was initially ventilated for just less than 24 hours, followed by CPAP for a further 5 days. He spent a total of 6 weeks in Special Care. He was initially nasogastric tube fed, before moving onto oral feeding. Kerem had an ultrasound scan when he was four days old, showing a small right germinal matrix haemorrhage. A repeat scan a week later showed echogenic flares within the right parenchymal region and sequential scans showed a cystic change in the same region.

? Kerem had a MRI scan of the brain in October 2009 which did not show any overt focal abnormality. He had a diagnosis in July 2009 of mild-moderate cerebral palsy, and displays physical difficulties that are consistent with left-sided hemiplegia. Kerem receives middle-rate care and high rate mobility Disability Living Allowance. He is also part of the Blue Badge Scheme.

? Initial concerns arose when at around 8 months, Kerem was not able to sit unaided, and he had fisting of his left hand. Soon afterwards, it was noted that he developed equinus posturing of his left ankle with a tight heel cord. Throughout the course of the year, Kerem continued to adopt this posture, and it became more prominent especially when he was weight bearing. Physiotherapy and Orthotic Services were involved. He was supplied with AFO splints for both legs. Botulinum Toxin has been discussed more recently and it was felt that he should be given time to adapt to the latest AFO splint and heel support he has been given, with a view of Kerem being referred to the Botox Clinic at his review appointment on 11 November. Kerem learned to sit at 10 months, but did not crawl until he was 15 months old and finally learnt to walk at 2 years and 4 months.

? Kerem tires more easily than other children his age, and despite sleeping soundly at night, he requires a nap of 1-2 hours in the afternoon. Kerem is a faddy eater, and is very reluctant to try foods that he does not recognise. It has been suggested that t The occupational therapist introduces messy play with Kerem, to introduce him to various feelings as it is thought he has sensitivity to certain textures. As a consequence, Kerem needs supervision at meal times to ensure he is eating, and that his weight, which is below average, does not fall.

? Kerem is able to walk without the need of physical support. He wears an AFO splint on his left foot, and uses a heel support inside his right shoe. Despite the splint, Kerem still attempts to walk on his tip-toes, causing him to 'hobble' and have difficulties with his balance. Due to the time spent on his feet in nursery, he quite often regularly displays discomfort at the end of the session. Kerem has monthly physiotherapy sessions at home, lasting around 90 minutes each time. This is also parterned with the orthotics clinic who provided him with his heel support, AFO splint, and also a splint that he must wear throughout the night. He is reviewed on a three monthly basis.

? He is unable to run or jump. The nursery which Kerem attends is a busy setting, with children constantly moving around. Kerem will shy away from being mobile as he has awareness that he may be knocked over by another child. He is hindered when trying to navigate his way around as his muscle tone increases when he is active. He cannot participate in games with his peers as he cannot run, cannot climb, or cannot use large apparatus without support. He falls regularly both inside the nursery and outside and as a result has suffered terrible bruising to both legs. He more recently suffered a blow to the head as he used a large abacus to pull himself up from sitting, and this subsequently fell on him, knocking him back onto the floor and banging his head.

? Increased muscle tone has also been noted in his left arm when he is active or excited. He shows difficulty in playing with basic equipment such as using a rolling pin to play with play-doh. Although he can achieve simple tasks like throwing, pointing and holding a pen, the effort required is much more than that of other children his age

? Kerem lacks the ability to complete many basic personal tasks that should be expected of him at this age. Due to the stiffness in his left arm and hand, he cannot put on his own shoes, fasten his own coat, or get dressed without support. Kerem is not potty trained as he is unable to pull down his trousers in time in order to prevent an accident.

? Kerem's speech and language skills are significantly delayed in comparison to other children of his age. SALT have been involved since Kerem was around 15 months old. He uses both Makaton and words in order to communicate, but his speech is very unclear and often can not rarely be understood by people who do not know him well. He only uses around 15-20 words and cannot initiate conversation. He also cannot structure questions. Close family members have difficulty understanding what Kerem is saying, and so it is a big concern that in a setting where Kerem is still new, he is not able to express his needs. He only understands key words in a question or instruction and therefore has to guess what is expected of him. Kerem often relies on gestures to aid his understanding, which means that he require needs direct visual contact with the person giving instructions.

? Kerem has delayed development of social skills. He shies away from adults that he does not know, often showing embarrassment when they try to communicate with him. He knows a few children out of nursery of a similar age, and can find it difficult to engage in play as he cannot communicate well enough to initiate a game or role play situation. He will play alongside other children, but does not tend to play with other children.

? This is emotionally challenging for Kerem and upsetting when he is unable to be understood by others. Most importantly, he is unable to form friendships. He does not have one-to-one help in which someone can get to know Kerem well enough to ensure that his needs are met. He has monthly speech and language appointments, lasting 90 minutes each time.

? He is a sensitive child, and becomes emotional if he takes a fall or sees somebody else upset. He requires needs reassurance and assistance to understand that everything is OK, so that he can resume activities. He becomes frustrated when he can?t make his feelings understood through speech, and can will display this through anger. He is also very anxious when in new surroundings or situations. Although he hasn?t had any 1:1 assistance at nursery, he has been starting the session later than the other children so that the atmosphere would be calm and settled when he arrived and the staff could focus on him whilst the other children started activities.

? Kerem?s cerebral palsy will needs careful management to ensure that he is given opportunities to catch up developmentally to the abilities of children his age. Limited Help is currently available through the health professionals involved with Kerem, but the support needs to be present at nursery, and subsequently school, once he starts in September 2011.

? Kerem is at a significant disadvantage to the other children in the nursery setting. I have been called in twice to change Kerem?s nappy when he has soiled himself as the nursery does not have the provision of staff to change him themselves. He finds it It is distressing for him to be left in a soiled nappy for any amount of time until I am able to reach the nursery, and this shouldn?t been expected of him. He requires needs a high level of support to prevent accidents and to help him with his confidence in this area, as well as his dignity.

? He is unable to interact with his peers as he cannot initiate conversation and cannot make himself clear to others. This means he is singled out as an individual as there is nobody present who can spend time with Kerem to improve his communication skills on a 1:1 basis. He is therefore unable to develop his social skills- something that is paramount in an education setting.

? Kerem?s physical difficulties present a health and safety concern as he is at risk from daily falls, trips and stumbles. As other children grow and develop, they get faster and more agile, and will expect Kerem to be able to avoid them. He is unable to move faster, and will therefore simply become an obstacle. He is at significant risk of injury in a playground without additional supervision, because he is not able to react fast enough to approaching children. He has already injured himself by using furniture to pull himself up from a sitting position and an accident report has been completed regarding a fall he suffered in the playground, from falling over whilst simply pushing along a pram. This could have been avoided, had the right supervision been in place.

? I believe that Kerem needs the help of a classroom assistant who would work with him on a daily basis. This person would be able to learn the way that Kerem communicates and understand his needs and emotions. Kerem needs support with the most basic of tasks such as dressing and help when using the toilet. He would most certainly will struggle when in primary school without this help. He would be unable to dress and undress himself for P.E. and be unable to participate due to his physical disabilities. As Kerem uses both Makaton and speech, he needs 1:1 interaction with somebody who can learn what he is trying to contribute to the class.

? Without additional support from an early age, Kerem will simply fall further and further behind. If he is to have any hope of a future without extensive additional support, he needs the benefit of dedicated, targeted input now. His physical difficulties are wide-ranging and affect all activities of daily functioning within a classroom environment.

? On a whole-class level, I am confident that without the support of the Local Authority, other children will suffer the detrimental impact of Kerem?s needs as the whole-class support of the Teaching Assistant is diverted to meet his needs. He simply cannot function without additional support. A Statement of Educational Needs Statutory Assessment for Kerem would enable the Local Authority and school to identify the provision he requires to be successful at school, and to* but also reduce the impact of his disability on the rest of his class.

StarkAndWitchesWillFindYou · 03/11/2010 14:42

Sorry, the -- means that it should be crossed out.

Very good. Hope you get what you need.

Sorry your child started out on this thread with mild difficulties with some hope and is now at serious risk of failing. Hope you have some chocolate.

chinchi · 03/11/2010 14:42

Great idea! I will print one off and send a copy and we have a review with him next Thursday which will have given him enough time to read it.

I know they are two different issues, but he was convinced at our last appointment in July that Kerem wouldn't meet the criteria for funding. I certainly hope his report wont jeopordise our attempt of getting a statement.

Should I send one onto SALT and physio too? SALT wrote me a glowing report about Kerem at her last visit, saying his speech had greatly improved. My own fault for singing his praises :), although she obviously could see for herself progress he had made. Again, I dont want her report to contradict anything I write!

OP posts:
chinchi · 03/11/2010 14:47

I just wanted to say, again, that I cant thank you all enough for the time and effort you have given me with this. There really are some genuinely lovely people out there. Thankyou.

All out of chocolate. And wine. Bugger. :o

OP posts:
StarkAndWitchesWillFindYou · 03/11/2010 14:51

Oh no, I'm not lovely. I'm just cross about waffly wooly provision so it is cathartic to take it out any waffle in someone elses written request for it! Grin

justabouttosellakidney · 03/11/2010 18:50

This reply has been deleted

Message withdrawn at poster's request.

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