“It is not in the stars to hold our destiny, but in ourselves”, said Shakespeare. Here are the ten sources of support you could access to change your child’s outcomes for the better. Having your beloved child diagnosed with a disability or a condition is not easy. It is not unusual to feel confused, lonely, helpless, and even hopeless, as I have experienced this firsthand. But you need not feel this way, as there is a lot of support out there you can access.
In this article, I have listed ten support sources that you can get access to receive help and support with your child’s neurodevelopmental condition.
1. Support organization for your child’s condition
- Your first port of call should be contacting the support organization for your child’s condition, that I have listed in my clinic letter
- Many of these support organizations are voluntary or not-for-profit organizations set up and run by voluntary unpaid management committees
- There are many organizations offering advice, support, and information for these conditions. I have listed here some of the condition-specific organizations:
- You will find it massively reassuring to speak to other parents whose child has had the same condition or disability as yours.
- They would be able to understand your position and emotions much better as they would have lived through it themselves.
- These organizations can offer you advice and support through a variety of means such as telephone helpline, online forums, newsletters, local support groups, family workshops and annual conferences
- You could also get in touch with support organization ‘Contact’ who help families with disabled children feel valued, supported, and informed.
- Networking and family-to-family support can help to learn from each other’s experience, knowledge, and skills.
2. Your local council
- You should check the website of your local council and contact them to speak
- Your local council has a duty under ‘the Children Act 1989’ to provide a range of services for families with a child with a disability
- They could help with ‘short break services’
- Holiday playschemes
- Provision of or assistance with care at home
- Help with the provision of some ‘aids.’
- Carrying out ‘housing adaptations’, when required
- Information regarding ‘Motability Scheme,’ i.e., help you lease a car if you have a child over three years with mobility issues
- Provide you financial assistance, e.g., travel costs for hospital visits
- Provide you information to claim various benefits such as Disability Living Allowance, Child Tax Credit or Universal Credit, Council Tax Rebate and more
- Provide SEND (Special Educational Needs and Disability) services and support.
3. Citizens Advice
- Are a national charity with a vast network of local offices that provide confidential advice in person, online or over the phone for free
- They provide independent, impartial, and good quality advice to anyone or a massive range of issues
- Whoever you are and whatever your problem, they could assist and signpost you. Citizens Advice can help and support with issues such as:
- Providing you information on a range of benefits and allowances you may be entitled to
- Advice on managing debt, budgeting, mortgage problems, rent arrears, pensions, making a will and borrowing money
- Information on living together, marriage, death, domestic violence, ending a relationship, complaining to health, education, or social services
- Advice on issues related to work, consumer goods, the legal system, civil rights, immigration and much more
- You can search for your local Citizens Advice at https://www.citizensadvice.org.uk/
4. My website
- You can find information for free on a range of neurodevelopmental conditions such as ASD, ADHD, DCD, Developmental Delay, Cerebral Palsies, Learning Disabilities, Special Educational Needs and more
- Under the Blog section, you will find a range of articles, all packed with valuable strategies
- There are articles on Developmental Milestones, Sleeping difficulties, Anxiety, Eating Difficulties, Behavioral Difficulties, Sensory Processing Disorder and much more
- New articles are uploaded weekly or fortnightly
- One could subscribe to receive a monthly newsletter for free
- For more in-depth information on a wide range of neurodevelopmental conditions, doctors and allied professionals could buy the book I edited with the help of renowned specialists at https://www.amazon.co.uk/Community-Paediatrics-Oxford-Specialist-Handbooks/dp/0199696950 or https://global.oup.com/academic/product/community-paediatrics-9780199696956
5. Health Visitor
- Health visitors provide universal service for all children 0-5 years
- Health visitors offer support and advice from the ante-natal period until the child starts school at five years.
- They can be based in children’s centres, GP surgeries, or community centres.
- They have community-based knowledge of local resources, children’s centres, and self-help groups
- They could provide expert advice on a range of issues such as:
- Postnatal depression,
- Weaning and eating difficulties
- Healthy weight
- Sleeping difficulties, potty training,
- Behavioral difficulties, tantrums
- Safety, hygiene, minor illness, and accidents
- Information and support on children’s developmental needs
- Coordinate immunizations, and
- Support children with special educational needs (SEN)
6. School Health Nurse
- School nurses in the UK are qualified nurses with specialist education in community health and the health needs of school-aged children and young persons
- They help in delivering the Healthy Child Programme (5-19)
- They could provide expert advice, information, and support on a range of issues such as:
- Support school in PSHE (Personal, Social and Health Education)
- Sex & Relationship Education to a young person
- Assist children at school who have medical conditions such as, Epilepsy, Asthma, Diabetes, Allergies, Anaphylaxis
- Health Promotion
- Supporting accident prevention and reducing risk-taking behaviours,
- Deliver immunisations
- Conduct health screening sessions, including the National Child Measurement Programme
- Refer children to GP or paediatricians if medical needs are identified
- Respond to enquiries or information requests from health service
- They can make referrals to Child and Adolescent Mental Health Services (CAMHS), Social Services, and the NHS.
7. Portage/Specialist Advisory Teacher
- Portage is a home-visiting educational service for pre-school children with Special Educational Needs (SEN)
- Professionals working in this service are qualified and experienced in working with children 0-5 who have SEN
- They could provide expert information and support on a range of issues such as:
- They work in partnership with therapists, paediatricians, and health visitors to promote good inclusive services for children with special educational needs (SEN)
- They can support the developmental needs of children
- They can monitor the developmental progress of children 0-5 with SEN
- Assist with requesting EHC (Education Health and Care Needs) assessment and can provide information to EHCP process
- You can get further information at the National Portage Association – portage.org.uk
8. Children’s Community Nurse
- Children’s Community Nurse (CCN) provides continuity of care from hospital to home for children with long-term medical conditions
- CCN can provide education and training to families in administering medications, care of gastrostomy tube etc.
- They provide emotional support, and expert clinical care to children and families with complex health needs, e.g., cerebral palsy, epilepsy, home ventilation
- They liaise between primary and secondary health care
- CCN work with children who have a life-threatening illness, those who require palliative or end-of-life care
- CCN work with professionals from social care, education, and voluntary agencies
9. Social care worker
- Social Care Worker (SW) Helps to safeguard and promote the welfare of children in their locality
- A Social Worker can arrange an appointment with you to discuss your needs and your family as part of a ‘needs assessment.’
- An SW can provide and support a range of services such as:
- Family support
- Services for children with disabilities
- Can provide help with arranging respite care, carer’s break, and home assistance
- They also provide services for child protection, looked-after children, adoption and fostering
- Help set up ‘direct payments. These will let you choose and buy services you need yourself
10. You, your friends, and your family
- Finally, it is you! You can play a critical role in enabling your child as you not only hold a central and constant position in your child’s life, but you also are the expert and best advocate for your child’s needs
- It would help if you considered establishing a ‘support system’ with friends, family and even neighbours where possible
- It would be best if you considered maintaining a ‘folder’ with a set of dividers. At the front of the folder, you should list names, telephone numbers and email addresses of all the professionals, therapists, and people in your support network
- You could do so by first educating them about your child’s condition and then helping them to accept or come to terms with the condition
- You need to reach out and ask for help when needed. It would help if you did so, especially during periods of stress and crises
- Your family and friends could provide practical help with respite, childcare, help with transport, shopping, visits to the hospital, assist in managing your child’s condition or meeting the developmental needs of your child and their siblings
Storms do not last forever; neither do difficult times. So, stay positive. Stay passionate. Be determined to help your child become all they want to be. Learn about your child’s condition. Be their best advocate. Be a pleasantly persistent parent. You do not have to take ‘no’ for an answer. Stay humble and be kind to professionals. Use the language of ‘we’, e.g., how could we work together to help my daughter? Or what can we do to help you to help my son? Keep a written record of all the correspondence. Take your child’s folder to all the appointments and meetings. Collaborate and communicate with health, education, and care professionals to provide child and family-centred care.
As Churchill said, by being a possibility thinker, you can see the invisible, feel the intangible and achieve the impossible. So, go ahead and get started. Wishing you and your child all the very best this world has to offer.