Useful resources for patients, parents and carers
Due to the high volume of calls to the Community Paediatrics Service, we are unable to respond to all queries. Please find below links to websites, support groups, forums and information that we hope you will find useful:
Cerebral Palsy
Scope
Scope provides practical advice and emotional support while promoting a vision of equality.
HemiHelp
HemiHelp supports children, young people and their families with events, support services and raising awareness.
Challenging behaviour
Family Lives
This website provides support and advice to parents of children who have challenging behaviour. Click here for more information.
Downs syndrome
Downs syndrome
Resources, support and facts on downs syndrome to help both those who have the condition and their families. Click here for more information.
Gender identity
Gender Identity Development Service
The Gender Identity Development Service is a specialised clinic for young people presenting with difficulties with their gender identity. Click here for more information.
Hearing
National Deaf Children’s Society
The National Deaf Children’s Society is the leading charity dedicated to creating a world without barriers for deaf children. Click here for more information.
Information for blood tests
Blood test information for Heartlands Hospital
Blood test information for Birmingham Childrens hospital
Mental Health and Wellbeing
For 11 to 25 year olds now available in Birmingham. Kooth is a free, safe and anonymous service to support young people’s emotional and mental health in Birmingham. Online self-referral is available at www.kooth.com. This is an online platform for advice and support and is linked into the wider mental health support from Forward Thinking Birmingham.
Multi-sensory impairment
Sense
Sense provide support in helping people communicating and expressing themselves no matter how complex their disability. Click here for more information.
Multi-sensory resource pack
An information resource for parents and carers of children who have a multi-sensory impairment. Click here for more information.
Sensory Differences
There are a range of sources of information for parents and young people on how autism and sensory issues overlap. The National Autistic Society has information on its web site
website: www.autism.org.uk/about/behaviour/sensory-world
And the Autism Education Trust has produced this more detailed explanation in conjunction with East Essex County Council
Links : http://www.aettraininghubs.org.uk/wp-content/uploads/2014/05/sensory-issues-in-autism.pdf
There are also many books available that talk about the sensory systems, how sensory differences can impact on behaviour and what techniques can be used to help manage sensory issues.
- The Out-Of-Sync Child: Recognizing and Coping with Sensory Processing Disorder. By Carol Stock Kranowitz, M.A.
- The Out-Of-Sync Child Has Fun: Activities for kids with Sensory Processing Disorder. By Carol Stock Kranowitz, M.A.
- Too loud too bright too fast too tight: What to do if you are sensory defensive in an overstimulating world. By Sharon Heller, PH.D.
Advice on understanding and managing sensory processing difficulties is also available on the CYPF toolkit
Social Understanding
Your child may need ongoing support with developing social understanding. There are a number of useful resources which you and school may wish to explore.
These include:
- Understanding the unwritten rules of friendship by E Kennedy-Moore & N Madorsky Elman
- Friends Forever: How Parents Can Help Their Kids Make and Keep Good Friends by Fred Frankel
- Social Skills Success for Students with Autism/ Aspergers: Helping Adolescents on the Spectrum Fit In by F Frankel, F & JJ Wood
- Friendships: The Aspie Way by Wendy Lawson
Using Visual Cues
Autistic children often benefit from the use of visual cues. These can be used to support planning, manage changes or support communication. A range of visual cues can be accessed here:
Website: www.asdinfowales.co.uk/picture-cards
Website: www.autism.org.uk/about/strategies/visual-supports.aspx
Emotional Regulation
Some children may benefit from ongoing support in developing problem-solving skills, including perspective taking. You may find the following books useful:
- The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene
- Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis
Children who experience anger or anxiety may benefit from learning the warning signs of when the anger or anxiety is beginning to build; as well as a clear plan of what works to calm herself down at each stage.
This is a useful resource:
- The Incredible 5-point Scale: Assisting Children with ASDs in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron & Mitzi Curtis
Eating
Parents of autistic children often have concerns about their restricted eating patterns.
You may find the resources on Zoe Connor’s website (paediatric dietitian with an interest in autism) useful to manage concerns around eating.
Link : http://www.zoeconnor.co.uk/downloads/
The National Autistic Society also has some specific information regarding why autistic young people may have difficulties with eating.
website: http://www.autism.org.uk/about/health/dietary-management/restricted-diet.aspx
The charity SEED is and Eating Disorder Support Service and can offer a range of support and guidance
website : https://seedeatingdisorders.org.uk/services
Neurological disabilities
Neural
The Neural organisation are the collective voice for the 80 organisations campaigning together to transform outcomes for those with neurological conditions. Click here for more information.
Sensory impairment
BID Services
BID Services are a charity who work in partnership with children, young people, adults and their families/carers who are deaf, hard of hearing, visually impaired or have a dual sensory loss. Click here for more information.
Sleep
Cerebra
This website provides advice on how to get a better night’s sleep. Click here for more information.
Sleep
There is a strong link between sleep difficulties and autism and over time these may have an impact upon behaviour and learning and, in some cases, emotional and physical well-being; difficulties can include, falling asleep, staying asleep, sleepwalking and talking, enuresis (bed-wetting) and dreaming.
The National Sleep Foundation has a wide range of advice and guidance:
Website: https://www.sleepfoundation.org/
The National Health Service produces a sleep diary and sleep hygiene advice:
website: www.nhs.uk/Livewell/insomnia/Documents/sleepdiary.pdf
The Children’s Sleep Charity offers training and workshops specifically focussed on the sleep needs of families of autistic children.
Website : www.thechildrenssleepcharity.org.uk
Cerebra can also offer support and advice on sleep
Website: www.cerebra.org.uk
Support for families with disabled children
Birmingham's Local Offer
The Birmingham Local Offer will provide you with support and information on special educational needs. Click here for more information.
Contact
Contact support families with information and guidance, as well as bringing them together. Click here for more information.
Medical information:
For more treatment and medical advice, please click here.
Special Educational Needs and Disability (SEND)
Every child and young person aged 0-25 with a special educational need and/or disability(SEND) in Birmingham will have the opportunity to be happy, healthy and achieve their fullest potential, enabling them to participate in, and contribute to all aspects of life, click here for more information.
Click here to go back to the community paediatrics page.
Financial and Mobility Assistance
Disability Living Allowance (DLA)
If your child is under 16 you may be eligible to apply for Disability Living Allowance (DLA) on behalf of your child.
Website: www.gov.uk/disability-living-allowance-children/overview
Personal Independence Payment
Those over the age of 16 may be eligible for Personal Independence Payment
Website: https://www.gov.uk/pip
From 30 August 2019, the Blue Badge Scheme to support mobility was extended to individuals with a non-visible difficulty such as autism. Eligibility criteria for the scheme can be found at:
Website: www.gov.uk/government/publications/blue-badge-can-i-get-one
Siblings and peers
There are also resources to help your child’s peers or siblings begin to understand autistic differences. Teifi and Friends is a cartoon which shows some of the difficulties an autistic person may have and promotes acceptance:
Website: www.asdinfowales.co.uk/teifi-and-friends-2
Autism Superheroes is a comic strip book which aims to increase awareness of autism in children.
Website: www.asdinfowales.co.uk/autism-superhero
Sibs is a charity supporting siblings of children with a range of difficulties including SEN, autism or other serious long term condition. They offer information and advice to parents and professionals on who to support siblings.
Website : www.sibs.org.uk
Birmingham Carers Centre provides support, information and advice to people who care for friends and family with disabilities.
Website: https://forwardcarers.org.uk/local-services/birmingham/
Occupational Therapy
If you are waiting for a new or a follow up appointment and you are concerned about your child’s health please contact your GP, call 111 or 999 if an emergency.