Advice for parents of children with special educational needs and disabilities (SEND) or additional needs. Information on getting a diagnosis and support for your child.
If your child has a health or developmental condition that is impacting on their everyday life, this is often referred to as an additional need. It may be that from birth your child has faced some extra challenges or these may have become more obvious as your child has grown up.
Your child’s additional needs could be developmental, physical, learning, behavioural or sensory. Their needs might be easily met with a regular plan of care or a creative approach to their management. Some additional needs may continue throughout life and as a family there will be times you may require support from a number of services.
All children should have access to the right services, at the right time, to make sure they can reach their full potential.
Whatever your situation you may have a lot of different thoughts, feelings and worries.
You may;
- Be pregnant or have just had your baby and been told that your child is likely to have health and / or developmental issues.
- Be concerned that your child is not developing as you had expected and be worried about what this might mean for them.
- Have a child who has been recently diagnosed with a condition that will need extra support
- Have known for some time that your child has additional needs.
Finding out or realising your child will need extra support is hard. You and others who love your child will have to adjust to what this means for you all.
The way you cope is individual and may not be the same as for other family members. This is normal. How you feel can change from day to day, maybe even minute to minute. Sometimes you might find it hard to look to the future.
There are no wrong feelings. You might feel angry, sad, lonely and confused or you might feel strong, determined, and protective – maybe all on the same day.
Be patient with yourself and others it takes time – even your difficult feelings do not take away from how much you love your child.
- Find friends and family that you can talk to easily.
- Understand that you and your partner may not both be feeling the same. You may find it hard to be there for each other sometimes. Agree to check in on how you are both feeling without judging.
- Make sure information you look at about any diagnosis is up to date and still relevant. Care and treatments are progressing all the time.
- Try not to look too far ahead. Mindfulness can help keep focus on what is happening now.
Even when feel you have been coping for a while, there can be bumps in the road. These can cause the difficult feelings to flare up again. Be kind to yourself, ask for help when you are struggling and recognise you are doing your best in a difficult situation.
You may have heard the term developmental delay. It is used to describe when your child is taking longer to reach a milestone than other children their age. It can feel worrying knowing what this might mean for your child and what services are there to help you.
Some babies born early, or with some health conditions will have their growth and development followed up by a local hospital paediatrician – (a children’s doctor).
Sometimes a delay is noticed during an assessment later in their life or by a professional working with your child.
It might be that you feel worried your child is not developing in the same way or at the same rate as other children their age – you can call our advice line to talk to a health professional, or talk to your child’s school or early years setting about this.
Portage is a team of specially trained helpers who visit children with special needs in their own homes to work with parents and children on areas of development through play. Portage staff also provide support to help ensure a smooth transition for children starting nursery and school. Portage is aimed at children and families within Torbay that:
- Have a child under the age of 5
- Has a disability or special needs
- Need support from 3 or more professionals but including your G.P. or health visitor.
Your Portage Home Visitor will be your first point of contact. They will make sure you have all the appropriate information that you need and more importantly that you understand it.
They will ensure that all the people you are in contact with most meet regularly. A written plan will be reviewed at these meetings to ensure you are receiving the best service to suit your needs.
Parents share with the home visitor their understanding of their child’s individual abilities and support needs. The Portage Home Visitor will help the parents complete a developmental profile which will help with identifying the child’s strengths and goals for future learning.
In the early days when your child is being assessed or has a new diagnosis there can seem a lot of professionals involved in your child’s care.
As your child grows the amount of professionals tends to get less. This can be a big relief and lets you ‘get on’ with family life, but it can feel harder to know how to get the help when you need it.
There are local services to help your child and family. You do not have to feel alone. At 0 to 19 Torbay we offer support to families during pregnancy, throughout childhood and until your son or daughter reaches 19 years old or 25 if they have an additional need.
You may feel worried that your child will be more at risk of bullying because of their additional need or disability. Although bullies can focus on people they see as ‘different’ in some way, there is often not an obvious reason for why they pick on someone. There are different ways that people bully, but it is the bully who has the problem not their victim.
If you have concerns that your child is being bullied let school know as soon as you can and ask them how they will address the problem.
Advice from Parent Talk, my child is being bullied
Friendships are an important part of life. Young people thrive when they have the opportunity to socialise and build relationships with their peers.
During adolescence it is normal for young people to experiment with ‘romantic’ relationships.
This is an important part of your child’s transition to young adulthood. It is a special time but it can come as a shock to parents as they realise their ‘baby’ is growing up.
If your child has additional needs or disabilities you may have worried that this would not happen for them – it is a lovely thing to see them experiencing ‘first love’. You may also have some extra worries about this new stage and you might worry about your child being able to keep themselves safe. You might have concerns that others could take advantage of them.
If your child has additional needs your knowledge of them, how they understand things and how they behave is a very important part of keeping them safe. Talking to them about their thoughts, feelings and consent will help them understand how to keep themselves safe.
- If your child has a learning disability Mencap has good information on sexuality and relationships.
- Kidpower has information on touch and consent.
- NSPCC have simple information on consent using the PANTs campaign.
If you feel worried about your child’s ability to be safe in relationships you can talk to their school for support and advice. You can also call our advice line to talk to a health professional.
Puberty is when your body changes from being a child to a young adult. It usually starts earlier in girls than boys. In girls it can start as young as eight (but usually later), and continue until 15 or 16 years of age.
The changes happen because the body produces chemicals called sex hormones. For all young people this can be a confusing time. Children with additional needs might find it more so.
It is important to try and prepare young people for the changes. The physical and emotional effects of puberty can be more worrying if they do not know what to expect.
- Talk to school about how they teach personal, health and relationship education and the language and resources they use to describe ‘private parts’.
- Ask school if they have resources you can use at home too.
- Start talking to your child before any changes begin.
- Find simpler ways to explain puberty for your child if the way they understand things is different to their peers. See the specialist websites below.
If you think the physical and emotional changes are going to be especially challenging for your child, discuss it with school and / or health professionals involved in their care.
Register below for FREE online learning to help you understand your child. The course is suitable for mums, dads, grandparents, friends and relations, and is free to anyone living in Torbay.
Solihull online course – Understanding your child with additional needs
This online course is for parents with a child with additional needs. It is for parents, relatives and friends of children who may have a physical or learning disability or who may have autistic traits. In the UK, you may be within the SEND (Special educational needs and disability) system. Some parents describe their child as differently abled, or neuroatypical.
This course is in 2 sections. Level 1 lays the foundation for understanding your child. Level 2 looks at some particular aspects of parenting: sleeping and anger management, together with more about how we interact with each other. Understanding this can make it easier to work with your child’s behaviour as well as supporting their development. Once you finish Level 1 you can progress to Level 2 if you’d like to.
To access this course for free, just enter the code TAMAR.
Torbay Council’s Local Offer
The purpose of the ‘Local Offer’ is to provide clear accessible information about services available in the area from birth to 25 across education, health and social care for parents and young people with special educational needs and disabilities.
The Children’s Community Nursing Team work with children aged 0-18 years.
The team includes the following practitioners: Children’s Diabetes’s Nurses, Children’s Respiratory/Allergy Nurse, Children’s Paediatric Nurses, Children’s Epilepsy Nurse, Children’s Neonatal/Respiratory Nurse and Healthcare Assistants.
Children’s Learning Disability Health Team
The Children’s Learning Disability Health Team offers a specialist community based service for children with a learning disability within Torbay.
Their own web page provides more information on who they are and what services they offer to children and their families.
Parent talk – additional needs and disabilities
Over 25 articles offering advice for parents of children with special educational needs and disabilities (SEND) or additional needs. Information on getting a diagnosis and support for your child.
SENDIASS
We provide information, advice and support for young people & parents/carers of children with special educational needs and/or disabilities aged 0-25.
These toolkit has been designed to support families, carers and professionals who have concerns about a child’s ability to participate in everyday tasks (occupations) and focuses on the functional difficulties that fall within Occupational Therapy.
As parents/carers we must all take our child’s safety seriously whether we are in the home, school or in the community.
This service has put together some guidance and resources to support you to increase your child’s independence whilst ensuring their safety in the home.
First Steps
Every child is unique and develops differently. Each will struggle with different things. While some seem to breeze through life and school, others can find certain things very difficult. This can come out in their behaviour and it can be hard for families and schools to know the best way to support them. There is never a simple explanation for why a child is struggling.
This “First Steps” booklet is for those caring for a child with development needs. It is a record and a guide.