We know that starting school or nursery is a huge step for heart parents and children, and it’s normal to have a number of questions, worries and emotions.
Our webinar about starting nursery or school aims to support parents during this time and answer many common questions and concerns. Speakers include a cardiac nurse specialist, a clinical psychologist and Tiny Tickers staff and volunteers who have personal experience of this topic as parents of children with CHD.
Watch the recording here:
We have created an editable information sheet of things to make your child’s educational setting aware of. You can fill this in and ask that it be kept in a place that can be easily accessed, should they need to seek medical support for your child.
Information from a schools perspective
(by Kate Vize, a School Business Manager)
Key things the school will want to know about your child’s condition:
Condition name/diagnosis
Hospital name and consultant/specialist nurse contact.
Medication name, dosage and frequency.
How the condition affects day-to-day life.
What an emergency looks like.
Which hospital A&E the child needs to go to.
All this information is collected in the individual healthcare plan.
Support the school can offer:
The support offered by the school would depend on the condition and the child’s individual needs. This would be determined with advice from the child’s medical team, school nurse, parents, class teacher, School Business Manager and Local Authority H&S/Legal Team. This support will then be recorded in the individual healthcare plan.
How often to update information:
Minimum annually, or if anything changes in the meantime. The healthcare plan and list of medications (with expiry dates) that are held at school are sent home each autumn term for the parents to review. If there are any changes, a meeting with relevant people will be held.
If a child needs medication at school:
Medication for a long-term condition forms part of the healthcare plan. Parents have to complete the medication form for all medicines that are administered in school and administration is recorded. It is the parent’s responsibility to ensure medication is checked, in date and refreshed regularly. A reminder is sent to the parents regarding long-term medication once per year.
If a child needs time out of school for surgery/hospital stay:
This would be arranged with the child’s parents, medical team and school attendance team on an individual basis. The school will have a distance learning policy, which will offer provision for this. Some hospitals may offer education in the hospital setting, which can be discussed with your cardiac liaison nurse.
Other helpful information:
Parents need to provide several contacts for emergencies, not just each parent but also another one or two trusted adults who are happy to act in loco parentis.
What soothes and comforts the child when they are in crisis/emergency?
Any triggers that your child may have or things to look out for.
*Information and processes may vary between schools.
Starting nursery or school for children with CHD – psychological guidance
(By Rachel Avison, Clinical Psychologist)
When thinking about your baby or child starting nursery or school, it helps to know what might be going on for them cognitively and emotionally. Every baby and child is unique and therefore there is huge variation in when they will experience certain stages. However, we know that all babies and young children will go through a phase of separation anxiety – the intense feelings of distress when they are away from their parents or carers.
Separation anxiety is a normal part of childhood cognitive development and happens once they learn they are a separate person from their parent or carer and need to rely on them for their needs to be met. Separation anxiety can happen before a child turns one year old, or it can be seen in the toddlerhood. There are also peaks in separation anxiety as children grow and start to learn more about the world around them. You will know when your child is having separation anxiety when they start to cry or become very distressed or fussy when you leave them (even to go into another room). They might also be more clingy and need to be held or comforted after a period of separation. These are all normal emotional responses to being away from you and are a sign of a healthy bond and safe and secure relationship with you.
Top tips to support your child with separation anxiety:
- Practice separations: Leave your child with another trusted adult such as a grandparent or close family member for a very short period and build this up slowly over time. Your child will experience normal feelings of stress at first but will soon learn that other people can meet their needs for care and comfort.
- Talk to your baby, toddler or child. Be clear about what will happen, e.g. where you are going, where the child is going, what will happen and when you will come back. As much as we hold a lot of thoughts and worries about being away from our children, they don’t hold the same concerns. Children are great at being in the moment so may be upset at the goodbye but then quickly move on to playing (something nurseries and schools say happens very quickly).
- Make saying goodbye a positive experience: When saying goodbye make eye contact, smile, give a confident goodbye and a warm hug. It’s tempting to want to hold the child for a long time or until they settle, however, children can sometimes pick up on a parent/carer’s agitation or learn that something is unsafe. So, it’s helpful to move away after the hug, as hard as this can be for you!
- Allow your child to take a comforter with them to their childcare setting. It can be so helpful to use a ‘transitional object,’ something that soothes them at home to nursery or school. This could be a teddy, a blanket, something of yours that has your scent. Anything that they associate with calmness and safety.
Top tips to help you with separation anxiety:
- Being away from your child, who you know inside and out and have been with through some hard and vulnerable times, can be incredibly difficult. It can bring up lots of intense emotions, worries and concerns. Be kind to yourself when you take your baby or child to their childcare setting. Do you need someone to join you for support? Do you need some space afterwards to calm or just be with your own thoughts and feelings? Do you need some time to be distracted while your little one is away from you? Whatever it is, know that distress at being away from your child is normal and, as mentioned earlier, is a sign of a loving bond with them.
- Know that with time and repetition, leaving your baby or child with their keyworker or teacher will start to get better. As much as your child will start to learn their new routine and adapt to it, you will too. Whether that takes a few weeks or a few months, you will definitely notice an improvement over time.
- Do whatever you need to do to feel comfortable yourself with the childcare setting. It might be that you have lots of visits, arrange extra settling in sessions, you may arrange to talk to the staff to get to know them and observe how they support children, you can also provide as much information as you want to about your child (the Clinical Nurse Specialists can help with this). Don’t hesitate to ask questions about how they will work with you and your child and it’s okay to share any fears with them, these are entirely understandable.
- Finally, if you feel able to, talk to other parents going through a similar experience. Tiny Tickers have monthly online peer support groups for children under and over two years old. You are more than welcome to join these and to be supported by others going through the same challenges or worries as yourself. The online groups are a safe and confidential space to talk about how you feel, but to also hear the thoughts and ideas and top tips from other lovely heart parents!
