Ups and Downs Southwest

Ups and Downs Southwest

Down Syndrome support organisation

Providing support, advice and information to Parents

Carers and Professionals across the Southwest

Reg. Charity No 1116381

Patron: Dr Andrew Tandy MRCP MPCGP FRCPH

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Statementing Forms

A The Early years.Just answer these questions as you wish – they aren’t really relevant for our children – they’re more for children whose diagnosis came later in their development after concerns were raised over periods of time. Eg:xxxxx was diagnosed with Down Syndrome very shortly after his/her birth. She spent a week in the special care baby unit due to the hole in her heart which is now fully healed.

B. What is your child like now?

1. General Health.

This is the place to mention and detail if your child suffers from any medical difficulties, but also frequent infections or colds/viruses. If he takes longer to recover than ordinary children – if it affects his general well being throughout the winter etc? Is he likely to have more time off school or is he likely to have to attend school with a runny nose quite often as if he was off every time he had one they wouldn’t see him all winter?! Also mention if he tires easily – if he has particularly poor muscle tone (hypotonia) which affects his posture? May need verbal reminders and physical intervention to straighten his back – or special seating or just a firm chair? Does he still stumble easily? Mention if …. suffers from disturbed sleep or early waking and how this tends to affect him during the day. Food – is ….. a fussy eater? Does he still struggle with chunky hard foods eg apple or are there foods he can still choke on?

2. Physical skills.

…. can (list all the things he can do…) walk, run, climb, jump, kick a football, throw a ball with a reasonably good aim, but still struggles to (list things he can’t do…) catch a ball (maybe he can catch big balls but not small?) walk/run upstairs, hop, etc. Mention if he still stumbles easily? Is unsteady and could easily be knocked over in the playground during boisterous play? Maybe ….. tends to be a little clumsy and is more likely to knock or walk into things or knock things over? Describe …. co-ordination skills – quite good? Poor? Improving? Can or can’t pedal a bike or swing himself on a swing? Swimming can swim with armbands?

Receives physiotherapy or Occupational Therapy? Chair needs to be right height so that his feet can be firmly on the floor when working at a desk and may need a writing slope?

Also fine motor and co-ordination issues, eg: – …. has good pencil control and can scribble with a pencil or crayon, holding them with the correct grip – or hasn’t mastered full pencil control yet and still uses the palmer grasp? Starting to write his name? Mention jigsaw puzzles – likes them? Finds simple ones easy or difficult? Is able or unable to use scissors? Left or right handed? etc

3. Self Help.

Dressing and undressing: what can he put on and take off without help – or maybe only pull off? shirt, jumper, coat, pants, trousers, shoes, socks etc. Maybe can take socks off but not put them on? Struggles to put his own coat on? Needs elasticated-waist trousers so that he can put them on independently? Fastenings – can or can’t do zips, buttons, laces, Velcro shoe fastenings?

Talk about toilet training: Is dry during the day or not? Is dry but only with regular and constant verbal reminders? Without prompting by others will have accidents? Needs to be taken to the toilet as he will mess about with taps toilet paper etc and needs help to clean and dry his hands? Cannot clean himself when he has emptied his bowels? Needs someone to ensure his bottom is clean or he gets sore very quickly? Maybe he is not dry and so a toilet training programme (already underway at home perhaps or not?) needs to be agreed between home and school so that the approach is consistent in both environments? …..is not yet dry during the day and needs to be taken to the toilet every hour and have his pull-ups changed if he has wet or soiled himself?

Feeding: …….. can use a spoon and fork individually, but cannot yet co-ordinate the use of a knife and fork together and so needs his food to be cut up for him? ……. needs a plate or bowl with an ‘edge’ to help stop food being pushed or spilled over the sides? Needs help opening packets eg crisps, drinks cartons – can or cannot use a straw? Is a messy eater? Needs to be encouraged to wipe his face afterwards?

Runny nose? Needs to be encouraged to wipe his face and nose himself with help when necessary?

Can help with washing himself and can brush his own teeth with prompting and assistance?

Danger

…….. has no awareness of danger and needs supervision at all times. He goes nowhere alone and may be prone to run off through open doors or gates, into or across roads. – If this is a particular issue with Finlay then stress the point and elaborate further – the school will need to ensure that its boundaries are secure to keep ….. safe during breaks and unstructured periods and he will require constant and vigilant supervision to ensure his safety at all times.

4. Communication.

…….has significant difficulties with speech and language production, clarity and understanding and therefore his/her speech development is heavily relianton the input and advice of a qualified speech and language therapist. ……has been heavily dependent on signing (?) and although his speech is improving, still requires a ‘total communication environment’ where much information and speech presented visually with the use of signing, visual timetables, words and symbols etc. …. has an approximate vocabulary of ….. spoken words which are understandable by an unfamiliar listener and …… signs.( If he has many signs which are ‘his own’ or ‘made up signs’ then attach a list of those) ……. understands an enormous amount of what is said to him, but requires speech to be supported by signing to assist with his understanding and help him to remember the content. Maybe …….speech is coming along very well and he is already dropping a lot of his signs? Or maybe …… speech is still extremely delayed and he struggles to communicate, so requiring the use of signing alongside all speech/communication?...... is keen to communicate and is a sociable little boy? Or ….. is reluctant to communicate and can become withdrawn and unhappy in busy or loud environments?He is far less confident verbally when in public or with his peer group? Better with adults? At home is more confident and fluent and eager to communicate? …. can and will ask questions? Still using just single keywords or ‘telegraphic speech’ or his grammar is developing and will ask eg “Where’s Daddy gone?” ……. has very poor auditory memory and so finds it very difficult to hold on to complex or lengthy instructions, or…… can only retain two word/part instructions. Visual prompts and assistance will be vital to support …… in his accessing the work and activities taking place within the classroom.

5. Playing and Learning at home.

What does ……like doing? …….loves watching tv and dvds – favourites are …In the NightGarden, Bob the Builder, Mr Tumble etc etc. Loves looking at books with someone/alone? Shared activities? Likes dressing up? Is comforted by certain activities? Is calmed by certain activities? Loves music, dancing and action rhymes? Prefers to play outdoors or indoors? Likes Puzzles? Shopping? Concentration span of approx…… mins with tabletop activities and …….mins when watching tv! Describe successes with Portage? Recognizes numbers 1-5? Some letters of the alphabet? Is starting to learn to count? Can enthusiastically link some letters to words eg “m for mummy!” Has just started to match words?

6. Activities outside.

……. loves to be and play outside but these activities are often hindered by his running off and/or his lack of awareness of danger? Loves the park – slides swings etc? Loves to go swimming and is confident in the water as long as an adult is closeby and he’s wearing armbands - but has been known to run out of the changing room to poolside on his own? He attends pre-school/nursery without the presence of a parent but took a long time to settle in – or settled well and quickly? Goes pony riding – riding for the disabled locally?

7. Relationships

…..enjoys a very close and loving relationship with his parents and brother, sister – younger older siblings? He is also very loving and comfortable with adults he sees regularly and can become very attached to familiar adults?

Can become very shy in large crowds or on occasions such as a playgroup nativity play for example or ….can become too boisterous and over excited at such occasions? When shy …. can become uncharacteristically quiet and withdrawn or when over excited or overwhelmed by surroundings, noise, activity etc can become difficult and uncooperative and exhibit challenging behaviour? He is generally never rough with his peer group – or he can be rough with his peer group? pushing? hair pulling?

8.Behaviour at home.

…. is generally a happy content child? Use words and phrases which describe … as an individual eg: Affectionate, generous, empathic, cooperative, quiet, excitable, boisterous, busy, unsettled, nervous, challenging, loud, easily pleased, eager to please, shy, likes to be centre of attention, happy with his own company, easily upset, lacking in confidence, struggles to focus and stay on task etc

….. can become difficult if he is tired or upset or coming down with a cold? Etc and may … list the kind of things they might encounter at school if ……having a bad day? Eg throw things? Refuse to carry out instructions? Hit? Shout? Run off? Withdraw? On these occasions he/she needs to be told quite clearly but without emotion and using the appropriate sign ‘No’, that it is unacceptable? Needs distraction? Will require specific motivation and reward systems? If he/she is upset or distressed etc they can be comforted by/calmed by … looking at books together? Singing? Particular toys? ……responds well to praise and encouragement and will delight in carrying out requests and being praised for his good or ‘big boy’ behaviour? Distraction techniques can often be used to nip bad behaviour in the bud and addressing it/preventing it before it asserts itself or gets out of hand?

…. can struggle if a routine is changed or if promised activities do not take place? ….. is happy however, to learn new routines when this is encouraged, supported and reinforced by adults? …. thrives on ….. eg daily routines and repetitive tasks? Group tasks? Praise and encouragement?

9. At School

Once …. has become familiarised with staff and routine he becomes very fond of the staff and quickly learns to identify both adults and children around him? Or would …. struggle with that – say so. He talks about/attends playschool with enthusiasm and clearly enjoys and thrives on time spent in that kind of environment. Staff involved with …. need to find a balance between being supportive and watchful but not being overprotective or having low expectations. ….. can (or struggles to..) stand in line, wait his turn, share, stay at the table for snack time etc. …. requires someone to help keep him focussed, interpret his efforts at communication and to break down tasks and activities to a level which would enable him to access all that goes on in the classroom and to take part in all activities and learning alongside his peers without becoming difficult/bored/ challenging etc.

C. Your general views.

What do you think your child’s special educational needs are?

…. has Down Syndrome and associated global developmental delay and learning difficulties (and challenging behaviour if you think it applies?). He requires supervision, support and monitoring at all times throughout the day in both structured and unstructured times to ensure his safety and ability to access learning and the curriculum. He will need someone to assist his understanding and to enable him to contribute and communicate effectively in class and in social situations outside of class. He is easily distracted and has a limited concentration span and therefore requires someone to help him stay on task and keep focussed, making activities as interesting and play orientated as possible. He needs support with visual cues as much as possible and needs to have task repeated and presented at a pace he can keep up with to enable him to consolidate his learning. He needs to remain in the classroom and alongside his peers so that he can learn by imitation, and spend as much time as possible with children modelling age appropriate behaviour and social skills. He will need to have the curriculum and his lessons differentiated thus enabling him to progress successfully and reach his full potential.

2. How do you think these can best be provided for?

…. needs can be met by full time 1:1 support and appropriate differentiation being provided to him in his local mainstream school. …. will thrive on child centred learning which will enable him to access the curriculum and challenge him academically whilst providing him with the support and differentiation needed to ensure his success. …. is also more likely to succeed and enjoy a successful placement in a school environment where staff are enthusiastic and positive and are willing to access and take on information, advice and training available about the specific learning profile for children who have Down Syndrome.

3. How do you compare your child with others of the same age?

Compared to other children of his age …..has particularly delayed speech. He does not have the clarity of speech production or the vocabulary of his peers and his grammar and syntax are not comparable. His general awareness of danger is only comparable with that of a much younger child and could never be trusted to ‘stop at the kerb’ or ‘wait at the gate’ as other four year olds may be. His muscle tone is poorer than his peers making it harder for him to co-ordinate and organise movements smoothly and successfully and also causing him to tire more quickly. ….. learning difficulties also mean that his behaviour compares again, more with that of a younger child, and his learning requires more repetition and scaffolding than other children.

4. What is your child good at or what does your child enjoy doing?

Think only you can answer that one! Looking at books is a popular response, naming colours might be another – watching TV/DVDs is another popular one or maybe running in the park?

5.What does your child worry about. Is he aware of his difficulties?

Describe the kinds of things which worry or upset ….and then either say that ……. is entirely unaware of his difficulties but that school and staff must ensure that his self esteem is not affected by a growing awareness which is may occur over time – or say that you think maybe …. is becoming aware of his difficulties or that other children can do things that he can’t and describe if that frustrates him or bothers him at all. (Does your child know he/she has Down Syndrome? We would suggest you use the words around him/her openly and regularly in a positive way. Mention other children who have too. I have brought my son up to know that he has something called Down Syndrome – that some children do and some don’t – just like some have brown hair and some have blonde hair – some are good at reading and some are good at running! And I always told him that the only trouble with Down Syndrome is that it makes things a bit tricky – and he knows that’s why he had an assistant – and it has never bothered him one bit!!!)

6. What are your worries and concerns?

That his potential is not underestimated

That he is given genuinely equal opportunities and access to the full curriculum and life of the school

That despite his developmental delay he is not too ‘babied’ by staff and pupils

That he remain safe in the school environment

That he access sufficient speech and language support to encourage his spoken language and communication abilities.

That he is supported by staff who are optimistic and encouraging.

7.With whom would you like more contact?

- List!! Speech and language therapist/ OT/Physio/Educational psychologist/learning support service etc etc

8.Do you think your child’s needs affect the needs of the family as a whole?

Never quite understood the point of this one and different parents choose to answer it very differently – it’s a bit personal to you really so answer as you feel best – some say that they feel genuinely privileged to have their child and that he has enriched their lives etc and that although his care and education present more challenges – the rewards far outweigh all of these! Some choose to point out that the care their child with DS has demanded has sometimes placed a strain on the family and some say it has a detrimental affect on siblings because they haven’t had as much attention as they may have otherwise enjoyed? Its’ up to you!!