New toolkit launched for parents of children with disabilities

Do you know any parents of children with disabilities? Do you know what challenges they face? How they are coping with their own lives, as well as their child’s?

Being a parent is tough, no matter the circumstances. It can be physically and emotionally exhausting. When one or more of your children live with disabilities, this means there are extra dimensions to come to grips with.

The amount of new information might make your head spin, especially for parents who are new to this situation. What does this mean for their health? Their education? What is going to change over time? It can be tough to know where to start.

And what about everything else? What happens to your career? Do you have enough time for your other children? What about your partner? Or yourself?

You might also feel guilty, or ashamed – worried that you’re not able to cope, or embarrassed about asking for help. Some parents may also feel grief for life opportunities they thought their child would have which now may not be attainable.

A new toolkit, launched last week, could offer transformative support.

The Children and Young People’s Strategic Partnership (CYPSP) has published a guide “for parents on their journey through disability”.

Its production was led by parents, for parents and as such it contains a raft of useful details on everything from identifying and accessing core services to a guide to schooling to finding inclusive social and play spaces for your child.

For those struggling with a lack of information, or who are emotionally overwhelmed, this is vital.

As the CYPSP media release says: “This resource is by parents for parents and its development has been parent led from the onset and addresses the whole life journey for parents of children with disability and additional needs… We encourage you to share this resource widely to enable us to reach as many parents as possible.”

The new guide was developed off the back of a report produced by CYPSP, alongside Early Years and other partners.

Report

Our Journey Through Disability was published in 2020. It is based on large engagement event featuring parents, community organisations and more.

It identifies many of the barriers facing parents of children with disabilities when they are trying to do the best for their child. Many of those barriers relate to services. In Northern Ireland, some services do not have enough resources to meet demand, which can lead to obvious frustrations.

However, even within existing services there can be many issues. Communication between parents and service providers can be difficult – while different service channels, such as clinicians working in separate departments, also do not always communicate with each other in a clear way.

In fact, the list of barriers goes on and on. Some even have no direct link to children themselves, such as looking at parents’ employment rights.

Then there is self care. Being the parent of a child living with a disability can be extremely challenging, both physically and emotionally.

“Parents spoke of the grief they felt of the loss of the child they thought they would have and the lack of support (counselling) around this. It is hard to approach services to admit they cannot cope or do everything on their own. They put on a brave face to hide what is going on with them as they need to fight for their child.

“Parents reported feeling overwhelmed at the information overload once their child has received a diagnosis, and the guilt around neglecting their other children as they devote the majority of their time around their child with additional needs.”

This is why the new toolkit could be so effective. It contains information that parents feel is truly important – and also strikes the right tone. As the 2020 report says:

“Peer support was the overwhelming suggestion to overcome this barrier [feeling overwhelmed or guilty]: the understanding and knowledge of a peer’s journey gives immense support. Other feedback included support for couples as relationships can be strained and taking time out for yourself.”

Toolkit

All parents of children with disabilities will have questions and face uncertainty.

The CYPSP toolkit is a practical and sympathetic guide that will help answer parents’ key questions, signpost them to services, and remind them that it’s OK.

“Receiving the news your child has additional needs/a disability, diagnosed or not, may have been sudden, you may not have had time to even absorb it properly and you may be experiencing a sense of grief, or loss. As a parent, we often imagine and dream of all sorts of things that our child will do in the future and it can hit us hard with the realisation that life may not progress for them the way we had envisaged it…

“For some a diagnosis can bring an enormous sense of relief, bringing some ease after dealing with countless organisations/representatives, taking your child to many appointments and taking one step forward and two steps back. Maybe you now feel a sense of hope, that there might be a light at the end of the tunnel, so to speak. For others, your child receiving a diagnosis may come as a shock; you may find it hard to accept it, or you may think that 'they' have got it wrong. This may be because you find it too overwhelming to accept that your child has a disability and all it entails, or you may simply disbelieve that your child has a disability at all. You may be devastated because you hoped that you'd be told that everything is ok.

“The most important thing to remember is that everything you're feeling, or not feeling, is natural. Don’t dismiss your feelings, because that is part of the process for you as a parent. You may have already been through so much emotionally on this journey with your child.

“Often, you can feel like you've been left stranded with this information and not sure where to turn! If you have had interactions with various services, communication can just seem to stop. What's next? Who can I talk to? Where do I go for help? Will someone contact me? All these questions, and more may be running through your mind. Even if there are some explanations/offers of help/instructions at this stage, you may not absorb the information, and/or you may not be ready to move on to the next stage.”

The third sector is at its best when it helps communities to help themselves and this is a great example of that.

On any given day in Northern Ireland, there will be new parents trying to come to terms with the fact that their child’s life, and their own lives, are not going to be how they imagined.

Dealing with this requires an emotional journey while, at the same time, parents have to lean into their role as mums and dads (or guardians). For some people, this 50-page document will be a game changer.