Medicines for children
Posted: May 21, 2012 Filed under: General Info | Tags: medicines for children, SWAN UK, well child Leave a comment »WellChild have recently launched a new resource called Medicines for Children, in partnership with the RCPCH (Royal College of Paediatrics and Child Health) and NPPG (Neonatal and Paediatric Pharmacists Group).
Medicines for Children provide online or printed leaflets giving free, practical and reliable information on over 100 medicines. Written specifically for parents, they answer the questions which are often a concern, such as
‘When and how do I give my child their medicine?’
‘What if I forget to give the medicine, or I give it twice?’
‘Are there any possibly side effects?’
Parents and carers can search by the name of a medicine, brand name of a drug or the disease, condition or infection being treated. There is also a news section and a range of videos showing how to give medication.
All information is written and reviewed by children’s doctors, pharmacists, and parents and carers with real experience of the concerns and issues parents face when giving a child medicine at home.
** GET INVOLVED **
Parents have been actively involved at all stages, and WellChild continue to welcome new parents and carers to join our team. This could be through helping us to make sure leaflets are easy to understand, giving your views on how the resource could be developed, or by helping to promote the website by becoming a ‘Medicines for Children’ champion.
If you have feedback on the website, or wish to get more involved, either contact Hannah Bemand athannahbemand@wellchild,org.uk, or click on the Medicines for Children ‘Get Involved’ tab.
To visit the Medicines for Children website click here.
Sensory stuff for under £20
Posted: April 4, 2012 Filed under: General Info | Tags: lights, sensory, SWAN UK, undiagnosed Leave a comment »
Mirror Sheets (cut to any shape /size)
Remote Control Colour Changing Light Bulb
(Please not that this is for information only and these products are not in anyway endorsed, guaranteed or recommended by SWAN UK or Genetic Alliance UK)
‘Your child: Eating and behaviour study’
Posted: March 20, 2012 Filed under: General Info | Tags: eating habits, learning disabilities, study, SWAN UK Leave a comment »Calling all parents of children with a learning disability – would you be wiling to complete a short online survey about your child’s eating habits and behaviours and your role as a parent in relation to these?
Fiona Gellatly is a Trainee Clinical Psychologist who is undertaking a study as part of her doctoral training to find out more about about factors contributing towards healthy eating amongst children who have learning disabilities, including the role that parents may play in this.
Full ethical approval has been obtained for this study. For more information and to complete the study please go to:
https://www.survey.ed.ac.uk/readmevoluntary
https://www.survey.ed.ac.uk/menus4mitespart1
Many thanks for taking the time to consider participating in my study.
All they want for xmas . . ideas for presents for your child with additional needs
Posted: November 7, 2011 Filed under: #SpecialSaturday, General Info | Tags: christmas, disabled children, present ideas, sensory, SWAN UK Leave a comment »
Last weekend the specialsaturday community were discussing ideas for christmas presents, you can check out their discussions by clicking here
One common theme seemed to be how parents can struggle to think of ideas so here at SWAN UK we have decided to start our very own santa’s wish list!
Below you can find links to some of the suggestions made at the weekend plus a few other things we have discovered – we will keep this list open up until xmas so if you have other ideas please add them in the comments below or email to SWAN@geneticalliance.org.uk so we can add them on.
(Please note that this does not mean SWAN UK endorses or recommends any of these items. We also cannot guarantee that the links provided will take you to the cheapest version of this toy so if you see something you want to buy you might want to check if you can find it cheaper elsewhere)
DVD’s
Makaton nursery ryhmes DVD – http://amzn.to/rqsaJt
Personalised DVD’s – your child stars in the animation – http://bit.ly/8b9q2i
Mr Tumble – http://amzn.to/t1srO6
Books
Adventure books personalised to your child www.myadventurebooks.co.uk
Talking toys
Old school talking teddy ruxpin – http://bit.ly/rZ3W59
Bouncing tiggers http://amzn.to/smW3MB
Bubbles / bubble machines
http://bit.ly/ufeyWR
bubble pipe – http://bit.ly/vJOpEf
http://bit.ly/urfXmm
http://bit.ly/sAh82b
http://bit.ly/vVcI7V
Ball pools
100 coloured ball pool balls – http://bit.ly/kVUlv3
Ball pit – http://bit.ly/rRoonb
Hello kitty sensory play den – http://amzn.to/sr69eT
Blanket den frame (make a sensory tent) – http://bit.ly/uJGqtw
Hopper horse – http://bit.ly/vqgdOR
Supportive swings – http://bit.ly/t91mjQ
Chewable toys
Bracelet – http://bit.ly/teJrhl
Jewellry - http://bit.ly/t7zVFV
Tubes – http://bit.ly/nbDDD6
http://amzn.to/shuJIL
Pencil toppers – http://amzn.to/thpiYF
Retractable key chain – http://amzn.to/vyi8ep
Lights / visual
Colour mixing glasses – http://bit.ly/ruAcjo
LED spinner - http://bit.ly/t9Ijzw
Timer liquid – http://bit.ly/spl2Lh
Glow in dark bracelets – http://bit.ly/t7dKyL
Foam flashing baton – http://bit.ly/w2NPSp
Rainbow spring – http://amzn.to/tKluxC
Torches / projectors – http://bit.ly/sRcNGJ
Spinning bees – http://bit.ly/vOOBVW
Wind spinner hot air ballon – http://bit.ly/t5Opea
Starfish – http://bit.ly/tvr0r7
Sand timer – http://bit.ly/sWV5sH
Remote colour changing LED light bulb – http://bit.ly/cHCHQU
Plasma ball – http://bit.ly/sragIq
Cosmic disco ball – http://bit.ly/sQXSUg
LED fan – http://bit.ly/uOsNWi
Fibre optic wand - http://bit.ly/taO5Ii
Flashing glitter ball – http://bit.ly/upPKLp
Light up animal spinners (with or without sound) – http://bit.ly/rpyO1g
Flashing LED spinning top – http://amzn.to/syCD4x
Underwater disco light ball - http://amzn.to/u12TGD
Stuff to encouraging blowing etc
Warbling water bird – http://bit.ly/rMp280
Blow duck quack – http://bit.ly/sr3yet
Glow straws – http://bit.ly/uorm1N
Mini windmills – http://bit.ly/tOlDOF
Bath/ water toys
Underwater disco light ball - http://amzn.to/u12TGD
Sealife flashing toys – http://bit.ly/v0zY4Y
Porkupine puffer fish – http://bit.ly/uZmXaC
Sensory bombs (‘weight’ the water in the bath) - http://bit.ly/ueYR8X
Feel / touch/ tactile
Science putty – http://bit.ly/rwYGBm
Squooshy ball - http://bit.ly/u5Rrvt
Natural brushes – http://bit.ly/vCKOyE
Hairy fidget toys – http://bit.ly/w0J5KP
Feathers - http://bit.ly/vlWYpq
Sensory pillows – http://bit.ly/sYd2hW
Space blanket – http://bit.ly/vr2M3k
Squidgy uv octopus – http://bit.ly/u9VrgI
Bean bags - http://bit.ly/w3mgjt
Noise
Giggle sticks - http://bit.ly/rBP2Vu
Wooden rainbow sound blocks – http://amzn.to/uFvkcN
Pop up books with sounds – http://bit.ly/v6TQs9
V-tech toy talking laptop – http://bit.ly/tY2dRV
Dancing and singing xmas trees – http://bit.ly/shw6uN
Dancing, singing, handstanding snowman – http://bit.ly/vhnsQN
Flashing LED tamborine – http://amzn.to/sSbkXT
Wiggly giggly ball – http://bit.ly/uZPnR6
Musical hands mat – http://amzn.to/t9KaqC
Dancing frog – http://bit.ly/sBP36V
Sound cubes – http://bit.ly/sXgV27
Jibber jabber hammer - http://bit.ly/vS2OpE
Football rattle – http://bit.ly/vVEvtG
Finger ring bells – http://bit.ly/rreb8W
Animal paw (makes noise) - http://bit.ly/tuIDey
Jingle sticks - http://bit.ly/snWy1r
Humming spining top – http://bit.ly/uVb7A2
Help with fine motor / motor skills
balancing board – http://bit.ly/tvUvil
Figure of eight marble run - http://bit.ly/tlyt4x
Jumbo tweezers – http://bit.ly/ugaM4c
Climbing ladder – inside or out – http://bit.ly/uJGqtw
Activity and sounds house – http://bit.ly/v9WInk
Threadbale beetles – http://bit.ly/syHfdB
Mega building blocks – http://bit.ly/sjiJlj
Threader cheese – http://bit.ly/vvUEyu
Mirrors
mirror sheets (cut to any shape / size) – http://bit.ly/tW732x
Mirror bookcase – http://bit.ly/ur34w9
Infinity mirror corner – http://bit.ly/vGCGvs
Spinning marble mirror – http://bit.ly/w2Dsp3
Mirror ball - http://bit.ly/rUseoT
Smells
Fruity smelling balls - http://bit.ly/tMQflT
Smelly stickers – http://bit.ly/tMQflT
Smelly books – http://bit.ly/teTr0l
Aromatherapy squidgy dough – http://bit.ly/rHPWQ9
Weighted blankets / clothing
Sensory bombs (‘weight’ the water in the bath) – http://bit.ly/ueYR8X
Sensory Toy Website
special needs toys / sensory toys websites
http://www.specialneedstoys.com/uk/
http://www.sensorytoywarehouse.com/
Sensory stocking fillers
under £1 http://bit.ly/vijkrF
£1-2 http://bit.ly/vhHL27
£2-£5 http://bit.ly/rqx6g1
£5-£10 http://bit.ly/sRKQjy
Makaton resources – http://bit.ly/s3EvrR
Ideas from other parents
http://dreammom.blogspot.com/2006/12/best-toy-gift-ideas-for-special-needs.html
http://jgregorysharingsstories.blogspot.com/2011/11/special-saturday-christmas-gifts.html?spref=fb
http://ninjakillercat.blogspot.com/2011/10/cheese-autistic-motor-skill-toy-review.html?spref=tw
http://www.aspieinthefamily.com/2011/11/specialsaturday-festive-edition/
http://www.stuffwiththing.com/2011/11/christmas-present-ideas-for-heidi/
http://www.stuffwiththing.com/2011/11/christmas-present-ideas-for-annie/
http://www.savette.com/reviews/john-crane-welcomes-sevi/
http://www.savette.com/special-saturday/specialsaturday-christmas-gift-guide/
http://looking4bluesky.blogspot.com/2011/11/what-i-want-for-christmas-is.html
http://jontybabe.blogspot.com/2011/11/nablopomo-day-5-special-saturday-double.html?spref=fb
http://zootrain.blogspot.com/2011/11/special-saturday-christmas-gift-ideas_05.html
http://www.savette.com/reviews/squashblox-review/
http://www.passiton-sen.co.uk/shopping
Online tips for living without a diagnosis
Posted: October 5, 2011 Filed under: General Info, SWAN UK | Tags: delayed development, disabled children, living without a diagnosis, Netbuddy, tips, undiagnosed, undiagnosed children, unique, unknown diagnosis Leave a comment »SWAN UK is delighted that Netbuddy (www.netbuddy.org.uk) now have a page dedicated specifically for parents to swap tips about living without a diagnosis.
Families known to SWAN UK consistently tell us how isolated they feel and that before they joined our community they often felt like they ‘didn’t fit in’ with other support groups / networks for parents of disabled children – it’s therefore amazing to see Netbuddy dedicating space especially to these families so they know they are not alone, Thanks Netbuddy!
You can check out the tips already submitted here and make sure to add a few of your own while you are there!
http://www.netbuddy.org.uk/get-tip/help-support/undiagnosed-conditions/
Accessing your child’s files
Posted: October 4, 2011 Filed under: Education, General Info | Tags: data protection, health records, records, school file, subject access request Leave a comment »When your child has lots of tests and assessments done it can be almost impossible to try and keep up with them all. One good idea is to have a specific file where you keep copies of all the letters you receive.
There may be times when you want to be able to tell people about the tests or assessments that have been done or access copies of reports that have been written about your child – for example you might want these to support a request for a ‘statuatory assessment of special educational need’ (statement).
One way that you can get copies of everything is by using your rights under The Data Protection Act – you can find out more about your rights under this act here http://www.ico.gov.uk
How to get copies of your child’s files
The Data Protection Act covers personal information held about you (or your child) – this includes health records.
The ICO (Information Commissioner’s Office) says a health record is “any record of information relating to someone’s physical or mental health that has been made by (or on behalf of) a health professional. This could be anything from the notes made by a GP in your local surgery to results of an MRI scan or X-rays”
Under the data protection act you have the right to see information which is held about you (or your child) – this is called your ‘subject access rights.’
To see the information that is held about you (or your child) you will need to write a letter and make what is called a ‘subject access request’ and ask for a copy of all the information they hold about you (or your child).
It is a good idea to put a heading in bold at the top of the letter which has your name, address and any reference numbers etc that will help them identify you.
You can access a template letter from the ICO website here http://bit.ly/cPPtfn
You can also access more information about accessing information in your child’s school file / a template letter here http://bit.ly/oYnWUa
Some organisations may charge you a fee upto £10 and according the ICO website, “There are special rules that apply to fees for paper based health records (the maximum fee is currently £50) and education records (a sliding scale from £1 to £50 depending on the number of pages provided)”
Make sure you are clear in your letter about everything you want to see – if you forget something and have to make a second request you will have to pay the fee again.
After you have made your request and the organisation has received the information they need to identify who you are and you have provided the fee. It should not take more than 40 days (for schools this is 15 days)
Make sure you keep a copy of the letter you send – ideally send it by email or recorded delivery so that if you need to you can prove when it was sent.
What to do if the organisation does not provide the information you asked for:
According to the ICO website “if you have sent all the necessary information (including any fee) and
- the organisation does not respond to your request within 40 days; or
- you are not satisfied with their response;
you should send them a reminder letter by recorded delivery (and keep a copy of the letter).
If you do not get a reply fairly quickly, or you think the information you receive is wrong or incomplete, you can:
- ask us to carry out an assessment to see whether it is likely or unlikely that the organisation has responded properly; or
- take legal action through the court. F
Our assessment will tell you if it is likely that the organisation has broken the Act and may help you decide whether to take legal action. However, you can take a case to court without asking us for an assessment”
SWAN UK update
Posted: September 28, 2011 Filed under: General Info, SWAN UK | Tags: disabled, disabled children, facebook, information, SWAN UK, twitter, undiagnosed children, update Leave a comment »The SWAN UK update is out – you can read a summary of everything from our Facebook and Twitter accounts from the last few weeks HERE
Taking time off work
Posted: September 26, 2011 Filed under: Financial Info, General Info | Tags: appointments, benefits, disabled children, parent carers, working families Leave a comment »“Working Families is the UK’s leading work-life balance organisation”
Their website can be found at www.workingfamilies.org.uk and they have lots of useful information about your rights as a parent carer including FAQ’s like the one below about having to take time off for appointments or if your child is sick. They also have helpful information about benefits, parental leave and working.
You can access the parent carer section of their website here - http://www.workingfamilies.org.uk/articles/parents-and-carers
The following FAQ’s is taken from the Working Families website and can be accessed in its original setting here
“Can I take time off work for my child’s medical or other appointments?
Released 14th April, 2010|1,586 Views
Can I take time off work for my child’s medical or other appointments?
You do not have an automatic right to take time off work for your child’s medical or other appointments. However, there are rights you have which might help.
If it is an emergency, you have the right to take unpaid leave for a short period of time. For example, if your child is ill and you need to take her/him to the doctors urgently, you could take this emergency leave (called Time off for Dependants). You must let your employer know what is happening and get back to work as soon as you can.
Some employers do allow a number of days per years as carers’ leave or emergency leave, and they may pay for it, but they do not have to pay you for this time unless it is in your contract.
Another way you may be able to take this time of work is by taking parental leave. You have the right to parental leave if you have worked for your employer for at least one year. You have the right to take 13 weeks per child until the child is 5. If your child gets Disability Living Allowance (DLA) then you have the right to take 18 weeks per child until your child is 18. However, your employer doesn’t have to let you take the whole 13 or 18 weeks at once.
Normally you have to take parental leave in blocks of a week, unless you have a disabled child when you can take it a day at a time. You should give 21 days’ notice to take parental leave.
Remember that your employer is allowed to give you better rights than the law says, so for example they may let you give less notice to take your parental leave, or they may let you take parental leave a day at a time even though your child is not disabled.
Parental leave is unpaid but in some circumstances you can claim Income Support (IS) during your parental leave. You would need to meet all the other conditions.
For more information about Time off for Dependants, go here. For more information about parental leave, go here. For details of who can claim IS during parental leave, go here.”
This information was taken from the Working Families website found at www.workingfamilies.org.uk
Essential Items for your book shelf
Posted: September 16, 2011 Filed under: Education, General Info, Social Care Support | Tags: disabled children, education, law, social care, support Leave a comment »Disabled Children – A Legal Handbook
“The handbook aims to empower disabled children and their families through a greater understanding of their rights and entitlements. It is essential reading for the families of disabled children, their advocates and lawyers, voluntary and statutory sector advisers, commissioners, managers and lawyers working for public authorities, education, social and health care professionals, students and academics” (http://www.ncb.org.uk/cdc/resources/legal_handbook.aspx)
Chapters of the book are available to download as free PDF’s from the Council for Disabled Children here http://bit.ly/gRH0pU
You can buy the book for £40 from the Legal Action Group Website here http://bit.ly/92rdGg
SEN Code of Practice
The SEN Code of Practice lays out clear guidelines for supporting children with special needs in school.
You can order your free copy here and shouldn’t ever go into school without it! http://bit.ly/qp7FpT
