Recommendations from other parent carers
Have you recently come across a good resource / article / book that you would recommend for others to read?
Parenting Children with Additional Needs - July 2018 This resources includes regular newsletters and website.
ADHD Free Handout: Get a Grip on Tough Emotions
Females with Asperger’s Syndrome Unofficial Checklist "This is my opinion and based on my experience after 12 years of researching about autism and being officially diagnosed with Asperger’s Syndrome."
4 Tools To Help Kids Understand Conflict and Self-Control Here are some tips and tools for seamlessly integrating self-control and life-skills-building into the classroom.
West Sussex Library Service - SEND section What libraries offer younger people
Custom Voices
"Here is the information about the custom voices I mentioned at the Understand Me meeting on Tuesday, these are created by a company called VocaliD (pronounced vocal-I-D).
Their main website is https://vocalid.co/ and there’s lots of information on here.
It’s worth watching the introductory video: https://www.youtube.com/watch?v=b6QhgQqxdew
There are a number of companies doing custom voices, but I think VocaliD is the only company that attempts to match a sample of the user’s voice to those in its voicebank. I am currently going through this process with my daughter Becky (age 14) and we’re making a video about the process for Tobii Dynavox. The custom voices work with a fairly wide range of communication devices & software though, they are SAPI 5 compatible voices.
We need to increase the number of voices in the voice bank to improve the quality of voice matching, and it is free to donate your voice. This is great for those who have conditions that mean they may lose their voice in the future – so they can bank it now, and retrieve it later if needed. It is also great for relatives of a recipient to donate, as it is likely that a voice from a member of the family will be a close match for the user. The banking process takes between 6 & 8 hours, but you can just do say 10 minutes a day so it is achievable. More details about banking your voice here: https://vocalid.co/voicebank
Please tell all your family, friends & colleagues - their voice could be a wonderful gift to someone who needs it in the future!"
Guide Dog’s CustomEyes service produces tailor-made large print books for children and young people up to and including age 25 with a visual impairment or dyslexia. We support children and young people across England, Northern Ireland, Scotland and Wales.
Thumbs Up We are two mums (and grandmothers!) who have developed a fun range of creative products to reward children and engage with their learning and developing adventures. This range has been extended to children with additional needs acting as a tool to support them, to better understand them and to be understood. https://thumbsupworlduk.org/
National Elf Service (nationalelfservice.net) Unbiased blogs collating all the best evidence based research about conditions. Health and Social Care professionals in mind but useful for parents and carers. Topics including: Dentistry; Learning Difficulties; Musculoskeletal and Mental Health
Carers Club Lovely on-line community for all carers. It feels like a lovely supportive club. Its free and you get a monthly newsletter with latest information for carers including deals and discounts from a variety of companies. http://www.carersclub.org/
Brit Mums Britain’s biggest collective of lifestyle bloggers and social influencers In the ROUND-UPS section there is section dedicated to SEND pointing to all the interesting articles that month collected in one place. http://www.britmums.com/2016/11/send-round-up-special-school-parties-and-pushy-parents/
Firefly Community A place for special needs families to meet, talk and break down life’s barriers http://community.fireflyfriends.com/
Bringing Us Together Challenging Limiting beliefs. Blog. Web Chat. Information. training. http://bringingustogether.org.uk/
Wellspring Wellspring West Sussex is an independent organisation and registered charity, set up to provide information, dialogue and discussion with and for children and young people with disabilities, and their parents and carers in West Sussex. https://westsussex.local-offer.org/services/506
Childhood epilepsy: A Guide for Parents Being a parent, carer or guardian of a child with epilepsy can be distressing. The biggest challenge you will face is the fear of the unknown, so having some knowledge and information about the condition will help you to feel more confident. This guide has been written by experts from Young Epilepsy, Great Ormond Street Hospital and University College London Institute of Child Health.
Girls and Autism: Flying Under the Radar This guide aims to: - introduce the debate around autism and gender - identify key issues for girls with autism spectrum conditions - provide practical school-based support strategies - share family, professional and academic perspectives. View it here
Problem Solving Toolkit This toolkit aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. This toolkit aims to unpick these problems and to develop effective strategies for resolving them. http://w3.cerebra.org.uk/help-and-information/guides-for-parents/problem-solving-toolkit/
Top Tips for Participation Produced by Making Ourselves Heard and Participation Works, in partnership with young people from Generate UK and 1Voice, this poster lists a series of tips for involving young disabled people in your work. https://councilfordisabledchildren.org.uk/making-ourselves-heard/resources/top-tips-participation
Learning Disabilities, Autism and Internet Safety: A Parent’s Guide This guide outlines some suggestions to help parents limit the risk of their child having negative experiences online and understand what action can be taken if they do. This guide also suggests some resources that will help children get the most out of the Internet at home and in the community. http://w3.cerebra.org.uk/help-and-information/guides-for-parents/learning-disabilities-autism-and-internet-safety-a-parents-guide/
Learning Disabilities, Autism and Internet Safety: A Parent’s Guide This guide outlines some suggestions to help parents limit the risk of their child having negative experiences online and understand what action can be taken if they do. This guide also suggests some resources that will help children get the most out of the Internet at home and in the community. You can download the guide here.
Visual Resources Just stumbled across some excellent visual resources by Autism Connect. These include a guide to and examples of social stories, comic strips, timetables, intimacy scales, schedules and prompts, rules and rewards and the five point scale: https://autism-connect.org.uk/site/visualresource
Asperger's Syndrome > Asperger United is: A quarterly magazine for age 16+ (although some parents subscribe on behalf of their under-16s) edited by an autistic person; written by people on the autism spectrum, including Asperger syndrome, or (occasionally) by professionals with this group specifically in mind. http://www.autism.org.uk/about/adult-life/resources/asperger-united.aspx
The Complete Guide to Asperger's Syndrome (Autism Spectrum Disorder) by Tony Attwood. This book was recommended by our Community Pediatrician, an excellent starting point, full of strategies, easy reading and incredibly insightful.
The Incredible 5-Point Scale: Assisting Students in Understanding Social Interactions and Controlling their Emotional Responses by Kari Dunn Buron and Mitzi Curtis. This book is fantastic for self awareness and learning to self manage emotions. It's user friendly and really quick to pick up. The user can think about their own strategies for dealing with situations that are known to cause anxiety or difficulty.
There's lots of tips around the book on the author's website http://www.5pointscale.com/more_sweet_scale.htm There's a tip that includes keeping laminated cards with the scale on handy, I now keep one in my bag, my child keeps one in his school bag. When he's unable to talk or communicate he can use this to show how he's feeling. I've also used the anxiety curve illustrations to illustrate to people who teach/care for my child with little ASD background on the affect of anxiety.
All Cats Have Asperger's Syndrome by Kathy Hoopemann This is a wonderful book for those newly diagnosed, it's colourful, picture based and has a few words on each page relating to cats so it's not direct but can help understanding. I found going through saying yes I might be like that cat, but not this one etc was good. Would appeal across all age groups.
Of Mice and Alien's an Asperger's Adventure by Kathy Hoopemann A short children's science fiction story, it cleverly takes the lead character (Ben) through an adventure where he meets an alien, Ben has Aspergers the book shows the problems Ben has understanding his school colleagues and the people around him, the alien that he meets has the same kind of difficulties with understanding humans that he comes into contact with. It's a really sweet book with a nice ending, it introduces Aspergers very well and is good for helping others not affected by the condition with some understanding of it. It's also a great way to have conversations about elements that might be relevant to a child without it being too direct.
Maria Box writes the AUTISM COLUMN for the Crawley News
"IN her monthly column, Pound Hill mum Maria Box gives readers an insight into the ups and downs of life with her autistic son, Ryan.
AUTISM COLUMN: The problems caused by autistic children having really large heads
COLUMN: Is the behaviour of children with autism linked to the Moon?
COLUMN: How the colours red and blue can frighten children with autism
'Coping: A Survival Guide for People with Asperger Syndrome' by Marc Segar
Contains all sorts of information like learning to drive, moving out of home, humour, jobs and interviews - whole bundle in there. https://www-users.cs.york.ac.uk/alistair/survival/
Understanding The Spectrum by Theoraah
"I hear a lot of people misinterpreting or misusing the term ‘autism spectrum’. So for Autism Acceptance week, I decided to make a comic to help explain the term and how it affects things." Find out more
mASCO - managing Autism Spectrum Condition online together
