Nightmare parents or lack of understanding?

Grace Williams provides the parent’s perspective

In 2020, 275,604 children were reported as having an educational, health and care plan (EHCP) in the UK with 12.1% of students on special educational needs support without a diagnosis. Yet parents of children with special educational needs and disabilities are still often misunderstood and seen as ‘difficult’ by professionals, which may be due to a lack of understanding. I invite you to take a step back and try to understand the daily battles parents face.

The struggles parents face

Having a baby is an exciting but nerve-wracking experience for everyone, becoming a parent is extremely difficult. However, it is even more challenging to become a parent of a child with special needs. Families with children who have disabilities want the same things as other families (S’lungile et al, 2015).

They want to see their children reach their full potential, they want to be included and accepted by their community and they want to enjoy things together as a family (Baker & Fenning, 2007). For this to happen, children with special needs must receive the best support and professionals must recognise the value and expertise of their parents (S’lungile et al, 2015). Therefore, the relationship between parents and professionals is extremely important.

Grief

It is important to think about what a parent goes through when their child is diagnosed with special educational needs. During the diagnosis stage and for a long time after, parents feel disbelief, sadness and often experience feelings of loss or grief (Fernańdez-Alcántara et al, 2016). This is because parents must now accept that their child has special needs, and this may mean that their child is not the child they imagined they would raise. They will have imagined their child’s first words, first day at school and when they learn to read and write. They may have imagined watching them play football and the many birthday parties with their friends. Unfortunately, for a lot of parents of children with special needs, these things will never come true. This may cause some parents to grieve, and this is a long and painful process that may continue throughout

Grace Williams provides the parent’s perspective. their whole lives. They may always think what if, what if my child did not have special needs? What would they be like?

What would they grow up to be?

Alongside this they must care for their child and support them. They have to deal with sleepless nights and their child’s challenging behaviour. They must learn about their child’s needs and how best to support them while their world feels like it is moving at a million miles an hour.

Fighting for their child

To help their child reach their potential and get the right support parents have to fight for their children. They have to fight for a quality education for them whether that is extra support in a mainstream school or a place in a special school which meets their needs. It can be extremely difficult for parents to accept that their child needs support from a specialist setting also.

They also have to fight for extra support such as respite care and most people think this would just be given to you.

In 2016, 46.7% of permanent school exclusions were children with special educational needs and this number is growing.

For these children that means that their parents were caring for them full time. During the covid-19 pandemic we have all experienced lockdown and feeling isolated and hopeless. This is how many families with a child with special needs feel daily.

They may not be able to go on days out, holidays or even to the local supermarket because of their child’s challenging behaviour. These are just some of the things parents and families face daily. 

Teachers and professionals working with these families must understand this in order to support themeffectively.

Positive relationships

There is a growing recognition that the establishment of a strong relationship between parents and educators is a key element to effective collaboration and improved education for students with disabilities (Allred, 2015). Parents need to feel like they are understood, and that their needs and opinions are listened to.

Parents know the most about their children and will support them for the rest of their lives. Teachers should use this to their advantage and work with the parents to understand the child’s needs and the steps they need to take to reach their potential.

Parents may be lonely and not have anyone to talk to about their child and the challenges they face. Their family and friends may not know how to support them so they may distance themselves. Therefore, teachers may be the only support network they have. They may want to rant and discuss their child’s needs with you. I am aware teachers have a highly pressured job which comes with many challenges, but it would mean the world to parents if they felt they had someone on their side.

To conclude, when working with children and young people with special educational needs, take a step back and think about the struggles their families face each day. Their parents are fighting every day for their child and this battle will never end.

They need positive relationships with professionals involved in their child’s care and learning. Lastly, parents want the best for their child and will do everything they can to achieve the most effective support. Think about this before naming them ‘nightmare parents’.