Acquired Brain Injury Awareness Week – tips from a mum following a cerebral palsy diagnosis

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Did you know that someone suffers an acquired brain injury every 90 seconds? This week, May 20th to 26th, is Action for Brain Injury Week (ABI Week), a time to raise awareness of this life-changing condition and share useful tips and advice from survivors and their loved ones.

This year’s theme – “A life re-written” – highlights how brain injuries can change things, from daily routines to long-term goals. Our aim is to help people recently diagnosed with an ABI and their loved ones understand some of the challenges they may face so they can better adapt and not let it stop them doing the things they love.

Even though the effects may not always be visible, brain injuries can cause a variety of challenges. Throughout ABI Week, we’ll be exploring these challenges, celebrating the resilience of survivors, and advocating for better support.

In this piece Aidan’s mum, Krissy, shares invaluable insights gained throughout their family’s experience with ABI. More specifically we asked Krissy to tell us the top tips she wished she had been told when Aidan was first diagnosed with cerebral palsy. We hope that her tips will be helpful for other parents facing a similar journey.

Turn the negative to a positive

Life throws challenges our way, and it’s easy to get stuck in negativity. But what if we could flip the script? By reframing setbacks as opportunities to learn and grow, we can turn a negative into a positive. This shift in perspective empowers us to find solutions, build resilience, and ultimately emerge stronger. When Aidan was little his family was told that he would never walk. That made everyone so determined to get him walking that now Aidan can walk with some assistance – something the family were told he would never be able to achieve.

Accept help to give yourself a break. Don’t feel guilty you can’t do everything

As a parent or a close loved one of someone living with an ABI you will find yourself naturally trying to do anything in your power to help them, support their recovery and provide them with everything they need and more. Even though there is nothing more natural and beautiful than that you need to remember your own needs and take some time for yourself. Don’t be scared or embarrassed to ask for help when you need it and don’t feel guilty when you feel tired and in need for support yourself. We are all just human and burning yourself out will hurt both you and your loved one.

Don’t postpone seeking legal advice and getting professional support

In the whirlwind of emotions and challenges following an acquired brain injury diagnosis, taking care of legal matters, and securing professional support can feel overwhelming. It is often hard to prioritise seeking advice and support for the future when you need to meet your loved one’s immediate needs and work out practical matters but remember, you don’t have to go through this alone. Seeking legal advice early on can ensure your child’s rights are protected and help access the resources they need. Similarly, professional support can provide invaluable guidance in navigating therapy, education, and long-term care. Don’t postpone getting the help you and your child / loved one deserve – it’s an investment in their future well-being and neither you or them will benefit from you struggling to achieve everything for them on your own.

Don’t let having a disabled child stop you doing anything

Planning ahead for holidays and days out can be a game-changer for families with a child who has an ABI. By researching accessible locations, pre-booking activities with flexible cancellation policies, and packing familiar items, you can minimize stress and maximize enjoyment. A little planning goes a long way in creating positive memories for the whole family. There is nothing you can’t do with a little bit of planning so don’t let anything get in the way of experiencing the things you and your family desire.

Don’t get stuck on the diagnosis

The diagnosis of an acquired brain injury can be overwhelming. Being scared of the unknown and of the realisation your child is different and not the so called “normal” is completely natural and can feel paralysing. But remember, you may have to face some more unique challenges, but this isn’t the end of the story. You are strong, and together with your child, you’ll navigate through everything. Focus on the present, celebrate small victories, and embrace the unique journey ahead. You’ve got this.

 

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