CanChild have published a really useful resource packed full of helpful parent to parent tips on various elements of Cerebral Palsy. Topics include Learning to Transition and Therapy. You can view the resource here
Parkside, an organisation based in Aldershot, have a hairdressing service that runs from their centre. There is a support worker on hand and the hairdresser is very experienced with dealing with those with Learning Disabilities. It is for children and adults. For future dates and to find out more, call 01252 313103.
I’ve heard people talk about Merlin Passes – what are they?
Merlin Passes are annual passes which admit adults and children into Merlin Attractions including Chessington World of Adventures, Madame Tussauds, Alton Towers and more. Details can be found by clicking here
If a disabled Merlin Annual Passholder requires assistance on their visits to a Merlin attractions, you can apply for a free carer pass. They issue one free carer pass per disabled Passholder which is transferable between carers. The disabled guest’s and carer’s Passes will have the name, date of birth and a photo of the disabled guest.
To obtain a complimentary carer pass, simply purchase a Merlin Annual Pass for the disabled guest in the usual way. The complimentary carer Pass will be issued on your first visit to the attractions.
You'll need to provide proof of disability when getting your Passes issued, this can be any of the following:
Disabled Living Allowance letter (DLA)
Blue Badge (photo ID required)
Signed letter from GP (photo ID required)
Remember you will not need to pay for the carer pass. Therefore, if your group consists of four people, including the carer, you will need to pay for three people and collect the free carer pass on your first visit. When renewing, you will need to present these documents again as they recognise that disabled status and assistance required may change from year-to-year. If you collect Tesco Clubcard points, you can use these to buy a Merlin Pass
There is no support group for my child’s condition in the area, but I would still like to be in contact with other parents – any ideas?
Try contacting a National Support Group for the condition, they often have an online forum. From this you may be able to get in touch with others living in the local area.
Scope run a Face to Face Parenting Scheme that puts Parents of disabled children in touch with each other for emotional and practical support. You can read more about that here and you can find out about the face to Face Parenting group in Hampshire here
Online forums can allow you to chat to other parents without having to go out/arrange childcare etc. You can log on at any time and post a question or give advice to another parent. Do web searches for on line forums, for example this is a good ADHD one. http://www.adhders.org.uk
The card costs £20 per year and that covers the child and the parent/carer for 1/3 off the fare. If you have a child aged 15 or under, you may wish to consider a Family & Friends Railcard which covers up to 4 Adults and 4 Children. This costs £30 per year and provides a 30% discount on adult fares (age 5 to 15) and up to 60% on children’s fares for off peak travel. http://www.familyandfriends-railcard.co.uk/eligibility-benefits/what-do-you-get/
Where can I go for clothing to help prevent ‘grabbing and smearing’ with a tube fed youngster during the night?
Fledglings do specialist clothing for gastro fed children, specifically Joey vests that do up over the tummy. We also use a sleeping bag that has a zip that does up from bottom and top that allows the tube to be connected in the tummy area, these sleeping bags are specially made to measure to the individual child. http://www.fledglings.org.uk
http://www.tummytunnels.com These are used to reinforce holes in clothing accommodating the gastro tube. They do ship to the UK- and it takes 5-7 days. The shipping fee is $14.50- but it doesn't seem to go up if you order 1 or 20! They are priced at $3.25 each.
My child has been diagnosed with 'Sensory Perception Disorder', It is a struggle to get her dressed in the morning as she screams and has mega tantrums because she just doesn't like the feel of the clothes. Any ideas?
Tips from another mum:
Try giving a reward every time she puts on a piece of clothing and doesn’t make a fuss. I offered my daughter a choice of her most three favourite things, it took some time but the child soon got the hang of it.
I also introduced a timetable of what was to be done in the morning so she had pictures attached with velcro onto a long strip of card showing that tasks in order eg: get up - brush teeth - have a wash - get dressed (each item of clothing listed separately) and then breakfast. If the child did all that with minimal fuss she had a reward of watching tv because that’s what she loves to do. We had a timetable of what to do at bedtime as well. It was a lot of effort and didn’t happen overnight but now she is a lot better. She still has a problem when there is a new fabric introduced but we do the reward system for a new item of clothing. She never wears it all day initially, just a few minutes and then longer each time.
Tips from an OT:
Sensory issues are common in children but if this is impacting on daily living then you might consider asking school or the GP for a referral to the Children's Occupational Therapy Service. Waiting lists can sometimes be quite lengthy.
Contact NAS helpline as they might be aware of training on Sensory Processing Disorders happening locally which the parent can attend. http://www.nas.org.uk
There is lots of information out there about sensory processing difficulties. When a youngster shows this behaviour it described as “tactile defensive” and may indicate that there are other sensory issues she is struggling with. A good book that is clear and describes it all well for parents is "The Out of Synch Child" by Carol Stock Kranowitz.
DLA forms have changed significantly over recent years, and the guidance which now comes with the form was written with input from a number of carers groups. Cerebra http://www.cerebra.org.uk produces a very useful guide to completing DLA forms, which can be found on their website. There is also information on disability specific websites such as National Autistic Society http://www.nas.org.uk, National Deaf Children’s Society http://www.ndcs.org.uk and The Downs Syndrome Association http://www.downs-syndrome.org.uk and many of these have benefits advisers.
If you need face to face support, the following organisations may be able to help. It is a good idea to contact the organisations in good time, as there are often time limits on when the form needs to be returned.
Mencap in Andover have one dedicated benefit advisor who helps members with benefit enquiries and will meet with people to help fill out forms etc. The criteria for membership is to have 'learning difficulties' and be within the area they cover, which is roughly Andover. http://www.andovermencap.org/
All the CABs in the area (Alton, Petersfield and Whitehill/Borden) can offer appointments to help complete DLA forms and appeals and can provide support in applications. Please use the link directly to their website. http://www.citizensadvice.org.uk/
Liz Beattie works with children with Special Educational Needs and wanted her class to be able to use their iPads independently, with no worries about the iPads being damaged. Liz came up with the TabToob: a durable, shock resistant protective case to defend iPads from damage. The case protects iPads from falls, drops and throws, is lightweight, and has a non-slip easy grip.
Safer Net, a project managed by Respond, is a national network of groups and campaigners, who want to support people with learning disabilities to stay safe when using the internet. The project aims to make sure that people know about online abuse, the different ways that this can happen, and what to do if it happens to you or to someone you know
All or most families are used to keeping records about personal history, insurance, home, possessions, finance and so on. When a child has additional needs, most families encounter a necessity to keep additional records which are of a much more complex nature. It is very helpful to be able to keep these records in a non-burdensome way that means items are easy to find and no important details are lost
MedicAlert ID bracelets, necklaces and watches help make sure that you receive fast, relevant treatment in an emergency. Worn on your pulse point, they carry the international medical symbol and are an effective way to communicate vital details… because every moment matters
Check out this website packed full of unique and flexible guidelines that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities
Our ADHD/Autistic son, suffers with onset sleep insomnia, he has always been very challenging to get settled into bed and once there difficult to keep there!! we have tried many different strategies, even moved his bedroom around! but this miracle CD works for him!!
We purchased it from ebay by simply typing in ADHD, although I do think it is also available through Amazon. The CD is called: The Seashore Rachael and Charles Vald
A CD to help children sleep. We would highly recommend (although not guarantee for obvious reasons!) this CD to any parent with a child who has difficulty sleeping, costing around £7.95 this is money worth spending!! Good luck!
We were delighted when Ross came out of nappies @ 7 yrs old, however a new battle began in getting him to stand up and aim for the toilet instead of the walls/floor etc, so by placing a little ping pong ball or any little ball inside the toilet it gives them something to aim for…
Does your child dribble? Dribble bandanas can be made easily for little ones from facecloths folded diagonally and sewn and a press-stud added to fasten them – if you don’t want to make them there are a number of sellers online- just type dribble bibs into your search engine.
For older children, a sweatband can be worn on the wrist, with the child prompted to dab their chin when they are dribbling.
The National Key Scheme offers disabled people independent access to around 7,000 locked public toilets around the country. Cost is £4.50 including delivery - you have to complete a brief online form, and tick a declaration that you are applying on behalf of a disabled person. This can be found here
Various stores sell musical and light up toothbrushes at fairly reasonable prices. I found these are fantastic for Jamie who does not like brushing his teeth as it makes the chore fun. Also the light up toothbrush flashes for one minute so he knows that when it stops he can stop doing his teeth.
Special Direct is an online shop which specialises in special needs educational bits and pieces, I have bought, tried and tested many of the autistic books and pack, but they also have a large selection of Dyslexia, adhd, dyspraxia,speaking & listening, inclusion and dyscalculia not to mention many more.. they will send out a free brochure or you can just go online with no obligation to buy.