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.
Whilst you are in the neonatal unit you will have lots of support for you, your baby and your family. You might wonder what it will be like once you are discharged and what advice and services will be there to help you look after your baby. As well as feeling excited it is normal to feel a bit anxious about your baby coming home.
As part of the planning for you to take your baby home, the team on the unit will support you to feel ready. Everyone will want to help you to feel as confident and as prepared as possible for the big day.
Ask as many questions as you need to – and ask again if you aren’t quite sure. There really is no such thing as a ‘silly’ question especially if it makes the move to home easier for you all.
Some babies might continue to have extra health needs when they go home. The team will teach you any skills you need and make sure you know who will be providing any other care and follow up your baby will need.
It is usual to feel a little worried about taking your baby home, especially after a stay at the neonatal unit. Remember there is always help available from professionals but don’t be afraid to accept practical help from your family and friends too.
Getting Ready
It might help you to feel more connected to your baby whilst they are in hospital by doing some of the things that only you as a parent can do.
- Register your baby’s birth
- Register your baby with the GP
- Practice using your steriliser. If you are using a breast pump borrowed from the unit check how long you can keep this for and where you can hire / buy a similar one if necessary.
- Talk to your local pharmacist so they can be ready to supply any medication or specialist formula milk. The unit staff will make sure that you have enough supplies and guide you regarding future prescriptions.
- Get a room thermometer to check the temperature of rooms your baby will use at home. Room temperatures should be between 16-20 degrees centigrade.
- Practice fitting your infant car seat in your car. Take the seat in to the unit and see how your baby fits in to it – staff will be able to advise you if it is a safe fit.
Your baby may have been on the unit for a few days or many weeks.
When they are getting near to being able to come home you may have mixed feelings. Excited to be together as a family, but probably nervous about caring for your baby without the neonatal team close by. It is normal to feel this way.
Babies are only discharged when their medical team are confident they are well enough. Being home with you is the best place for your baby to be as soon as they are strong enough. It will probably feel strange to begin with and can take a little while for you and your baby to settle. There are services to reassure and support you.
Having your baby home is a big and exciting step. Having a baby on the neonatal unit is stressful and often not what you expected to happen. It can take time for stress levels to settle. It might feel very strange to begin with.
Sometimes babies seem less settled when they first get home. This can come as a shock but it is very common.
- They are getting used to the new sounds and smells of home.
- You will notice all the noises they make now you are away from the noisy unit.
- They are also getting older and bigger and more able to let you know when they need something.
- They are getting more confident that they can rely on you to react when they need help.
- Babies are very tuned in to how their parents are feeling, as you relax into having your baby home, things will settle down for you all.
When Baby is Unsettled
One of the things that can help on those unsettled days is to hold your baby. You will probably have had times on the neonatal unit when you could not just cuddle your baby whenever you wanted to. Now you can make up for lost time!
- Do not worry about ‘spoiling’ your baby – being held is really important for your relationship and their development and helps them learn they can count on you.
- Being close builds a strong bond and helps you learn more about each other. It will help you notice the cues or signs your baby gives to show what they need.
- In the long run this special time holding your baby and keeping them close makes for more confident babies and toddlers.
- Talk to your health visitor about baby massage classes – this can help soothe your baby and will let you both enjoy positive touch.
- If you need your hands free to care for other children, or just to make a sandwich, try a baby sling.
Being with a crying baby is not easy. It can feel like you are ‘getting it wrong.’ Try not to be too hard on yourself. Even when you can’t work out why your baby is upset they are learning that you always try to help them. This helps them feel safe and secure.
Small babies use crying as one of their ways to communicate with us. It lets you know they need you. The days (and nights!) when they cry a lot are always tough! Remember – all Babies cry, although this doesn’t make it easier when your baby is crying, there is advice and support available.
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.
If your child has additional needs or special educational needs (SEN), a support plan could help. This might be:
An Education, Health and Care Plan (EHCP or EHC plan).
An Individual Education Plan (IEP).
IEPs and EHC plans focus on your child’s individual needs, to help them reach their full potential.
If your child needs lots of help with certain activities, they may have special educational needs or a disability (SEND). This is sometimes also known as additional learning needs (ALN).
A diagnosis for SEND can help your child get extra support. You can also get some support for your child without a diagnosis.
It’s useful to understand what a SEND diagnosis will do for your family, and what it might not do.
Sleep and the lack of it is a big topic for many parents. When your child has an additional need the likelihood of ongoing sleep problems is higher.
Having a sleep issue is surprisingly common. At any given time up to 40% of adults and 50% of children (this rises to 80% with a SEND diagnosis) have difficulties with their sleep.
You are not alone and there is support and information available that can help you.
Taking care of yourself in whatever way you can is important. If you have a partner plan ahead to share the broken nights. Try and make sure you are both getting the occasional longer stretch of sleep.
- Are their family and friends who could help out sometimes?
- Take any chance to nap. If your child is at school, nursery or has a sleep during the day it is tempting to use the time for chores. Resting when you can will benefit your physical and mental health.
- Try mindfulness and meditation – some people find it helps to top up energy levels.
- Eating well, getting exercise are habits that can help keep you well.
Talk to your GP and professionals involved in your child’s care. They can help assess your child’s sleep challenges and support you too. There may be more help available for you and your family.
Cerebra are the national charity helping children with brain conditions and their families discover a better life together. Their sleep Guide gives detailed information on how you can tackle issues to improve your family’s sleep and our sleep cards offer advice on dealing with specific sleep problems.
If your child is 12 months or older, you can contact the National Sleep Helpline on 03303 530541 for support and advice. This is available Sunday – Thursday 7pm – 9pm. The helpline is run by a team of specialist trained sleep advisors. Although they cannot give medical advice, they can talk through your issues, offer you some practical strategies and recommend services that could help.
Parent Talk Bedtime, naps, and the questions that keep us awake at night. Get sleep advice from our parenting coaches.
Lullaby Trust
Reducing the risk of SIDS for premature babies. Babies who are born prematurely (before 37 weeks) or of low birth weight (under 2.5kgs) are particularly vulnerable to SIDS and it is important that all the safer sleep advice is followed. Safe sleep advice for premature and low birth weight babies.
Not getting enough sleep has big effects on the whole family. It affects physical and mental health. When you and your child are sleep deprived everything can feel harder.
The advice that is given to all families to help with sleep problems is a good place to start.
Bedtime Routines
- Start at the same time each night
- Have quiet, screen free playtime
- Bath
- Snack, drink and story time
- Try and keep the wake up time the same –even after a bad night.
If your child does not settle – go to them and reassure them that you are nearby and leave the room as soon as they are calm again. You might have to repeat this many times but will build their confidence that you are there when they need you.
Keep to it even if you don’t think it is making a difference – routines take time.
Supporting Bedtime Routines
Talk to your child about what is going to happen – some children understand this better if you have pictures of the different stages of bedtime.
Make the bedroom a calming place to be. Don’t use it as a place for ‘time outs’. Bedrooms should be a place your child likes to be.
Try a clock that changes colour to show when it is night time or morning. This works well for children and young people who cannot tell the time yet, or those that need a visual reminder.
Try the 5 magic kisses from Sleep Scotland. You can download any of these helpful leaflets below.
- Your child may take longer to learn each stage, so consider your expectations and don’t rush the learning.
- Focus on one stage at a time. For example, teach them that poo goes down the toilet by flushing it away together.
- Be as consistent as possible. The more consistent you are, the easier it will be for your child to learn.
- It’s important that your child feels relaxed, comfortable and secure about using the toilet or potty. Make sure the space is accessible to your child. An Occupational Therapist (OT) can help with practical adaptations.
- Think about your child’s sensory needs and how these relate to using the bathroom. Adjusting the sensory input can make a difference for many children to help them to learn toileting skills.
- If you start with the toilet you should use a footstool to help your child feel confident and safe. This will also help your child get into the best position for doing wees and poos, with their feet supported and knees above hips.
- Help your child learn the physical skills needed by breaking them down into smaller steps and allowing your child to do the last step independently. For example, help them push their trousers down most of the way, then have them push the last bit down themselves. Same when pulling them up again.
- Encourage independence as soon as you see it developing, phasing out support once your child shows competence.
- Use stories, visual charts, props and games to teach your child what to do and how to do it. Make your own learning aid by taking photos of your bathroom, drawing pictures of the steps, or by searching on the Internet for visual routines. A standard routine could be: 1.Undress 2. Underwear down 3. Sit 4. Do wee/poo, 5. Wipe, 6. Pull up underwear, 7. Pull up trousers/dress, 8. Flush toilet, 9. Wash hands.
- Give your child positive encouragement and praise for the efforts they are making, not just the result. This can help to keep them motivated and willing to move to the next step.
Great advice from above ERIC, the national charity dedicated to improving children’s bowel and bladder health. Find out lots of helpful information, downloads and videos.
Almost all children can learn to be clean and dry. Children with special needs including delayed development and physical disabilities may take a little longer and need more support. However, the process you need to follow is the same.
This can feel like a big challenge, but it’s important not to put off potty training for too long. The longer your child wears a nappy, the harder it may be to introduce a new place for them to wee and poo.
There’s information and tips on this page to support children with additional needs and sensory issues. Find out more from ERIC
Good oral health is an important factor in general health and quality of life. Evidence shows that people with learning disabilities have poorer oral health and more problems in accessing dental services than people in the general population.
People with learning disabilities may need additional help with their oral care and support to get dental treatment because of cognitive, physical and behavioural factors.
Having healthy teeth and gums is important and can have a big impact on general health and quality of life. Children and young people with additional needs may need some extra support keeping their teeth healthy and accessing the right dental care, at the right time.
Children and young people with additional needs have the same entitlement to dental care as all children and services should make adjustments to achieve this where possible.
Some children and young people may not be able to express the fact that they have toothache and therefore their discomfort could be misunderstood or missed. For this reason establishing a good dental health routine is important.
Sometimes specialist dental care will be the most appropriate and your dentist or GP can help find the right service for your child.
Tooth brushing with fluoride toothpaste is essential to keep teeth and gums healthy and is one of the most effective ways of preventing tooth decay.
- Always brush twice a day, before bedtime and at one other time in the day (for most people this is at breakfast time).
- Choose a toothbrush suitable for you:
- A Manual toothbrush should have a small head with soft/medium bristles.
- A rechargeable electric toothbrush with a small round oscillating head (battery brushes are not as effective).
- Keep your electric toothbrush fully charged.
- Toothbrushes/heads should be changed every 3 months or sooner if the bristles are splayed. They should also be replaced after illness (e.g. colds and viruses).
- After use toothbrushes should be well rinsed and left to dry naturally (away from toilet facilities).
- Toothpastes containing 1,350 to 1,500ppm fluoride are the most effective.
- A pea-sized amount of toothpaste containing 1,350 to 1,500ppm fluoride is the most effective.
- After brushing spit out excess toothpaste. Do not rinse your mouth with water or use mouthwash after brushing.
- Specialist Toothbrushes are available like Collis curve toothbrush
- Oranurse toothpaste has been developed without flavour or foaming agents
- Toothbrush handgrips or handle adaptions can also help people with dexterity issues maintain their independence.
Some medical conditions and drugs can affect oral health. Or they may affect the treatment given and the materials the dental team use. A full medical history should be taken to the dentist by the patient or their support staff.
Dry mouth is not just uncomfortable; it can also put you at risk for oral health problems such as tooth decay and gingivitis. Normally, the saliva in your mouthwashes away food particles, neutralizes acids that can attack tooth enamel and helps control the bacteria in your mouth. With dry mouth or xerostomia, there is not enough saliva to protect your teeth and gums from bacteria. You may notice problems with bad breath, sore throats and difficulty speaking or swallowing. Illness and some medications can contribute to dry mouth.
Visit the NHS website for more information about Dry mouth.
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.