Every parent has one common wish: that their child will be healthy, happy and safe. For the most part, children in the UK don’t experience any major health issues, but sadly, some families receive the devastating news that their child is disabled or has a life-long condition that could hinder their ability to lead a normal life.
This is a heart-breaking blow and is every parent’s worst nightmare. Depending on the child and the disability, the extent of such a diagnosis can extend far into every aspect of their life, and the effect it has on their parents can be profound to say the least.
If your child has been diagnosed with a disability, your medical team will more than likely give you plentiful resources to help you come to terms with it, but there are other ways that could help you cope. Whilst these won’t work for everyone, they could help someone adapt and overcome the situation they now find themselves in, and any help – no matter how small – is better than no help.
If there’s one thing that many people find helpful, it’s speaking to other people in a similar situation. Doctors can offer invaluable advice and support, but sometimes, it’s easier to speak to those who have been in a similar situation. There are many online groups that you can join filled with people who are going through the same thing as you and who have been where you’ve been. Talking to them could give you a realistic insight into what to expect, but it could also bring your children together. Joining a group can foster friendships between parents and children alike, making it well worth it for this reason alone.
On top of this, you are granted access to the wider community and you could potentially gain a greater insight into your child’s disability. This could present you with precious advice that you may not have otherwise heard but that can help you to deal with your child’s disability moving forwards.
Having a friendly face to help you through your journey can definitely make it less daunting, and having it from the get-go could help enormously when it comes to going through the motions and emotions that are inevitable.
There’s a tendency for parents to feel like they have to keep it together for the sake of their child, and whilst this can help the child, it’s of little use to the parents. It’s absolutely imperative that you are open with your emotions. It’s okay to cry, it’s okay to feel sad, it’s okay to feel deflated. Tackling these emotions head on – whilst unpleasant at the time – most definitely is not a sign of weakness. It will enable you to be more at ease with the situation you find yourself in, and unloading the emotional trauma can help you be more present and in-the-moment when your child needs you most.
Honesty is always the best policy
There might be emotions you would rather not feel or that you might feel guilty for feeling, but they’re normal. Feeling jealous of parents whose children are healthy and feeling bitter that this has happened to your family are normal and you should not be ashamed of feeling them. Instead of hiding them away, be open about them. What you’re going through is hard and difficult and extremely challenging, so anything you’re feeling during this time is okay and you need to make peace with it in order to move forwards.
Having a child with a disability is a mountainous task. If they have complex care needs, it can put a real strain on you and your family to try and accommodate them. As a parent, you may feel like it’s solely your responsibility to provide the care your child needs, and at the point of diagnosis you might make a vow to provide all the care for your child. This is an admirable move, but part of coming to terms with a diagnosis is the realisation that you won’t be able to do it all, all of the time. Bringing in carers or accessing respite support from both the NHS or the private sector through companies like Kase Care when the child gets older is something that is recommended, if not for your child then for you. You will need rest and reprieve, and it’s okay to take time out.
Understanding that you can’t do everything and making use of the services available to you from the very beginning will bode well further down the line for both you and your child, and you needn’t feel guilty for outsourcing help.
If your child has recently been diagnosed with a disability, you’re not alone. Being upfront about your emotions, taking all the help you can get and speaking to other families going through a similar thing could help you navigate through your journey. Paired with the advice of your medical team, you’ll be more than capable of giving your child the best life possible, and that’s all any parent can ever ask for.