As a parent or carer for a child who is living with a condition or disability, life can be incredibly stressful and emotional and can be difficult in advocating for your child. When we add in other responsibilities such as navigating support systems, liaising with health professionals, gaining approvals for funding, managing education, and keeping a happy and healthy household – it can all become a huge blur!
At Kameleon, every day we work with families who are facing similar situations and roadblocks. We work with parents who are advocating for their children each and every day, so we wanted to put together our top tips for carers who feel like they are fighting an uphill battle.
What is an advocate for your child?
If you were to look up the word ‘advocacy’ you will most likely find the definition as the act or process of supporting a cause or proposal. An advocate is a person who is providing support.
In most cases an advocate can:
- Explore and listen to all concerns and views
- Help with exploring what support options there are available
- Source information that might help someone make informed decisions
- Be the contact person for support and services to help with the burden
- Go along to meetings or be part of complex conversations
In terms of a family dynamic, traditionally the main ‘advocate’ will come in the form of family and carers.
How to excel in your role in advocating for your child!
As a parent or carer, advocating for your child can be complex and time-consuming. You will be facing a number of very emotive conversations and decisions that will impact the family. We have compiled our top tips for our everyday hero advocates!
Support and Self-Care
Our very first tip revolves around the fact that being an advocate does require a lot of time, emotion, and energy. These can all help drive success but also can come at a personal cost through burnout and compassion fatigue.
There is the old saying “You can fill from an empty cup”, and that rings true for anyone who is supporting their child.
Surround yourself with friends and family who can give you extra support. Find support groups or like-minded family circles who are going through the same experiences as you. Explore self-care techniques that will support you (anything from mindfulness sessions through to a nature hike) mentally and physically.
Be Informed
When faced with adversity, we can sometimes feel like we are thrown into the unknown. We are suddenly faced with navigating complex support systems, difficult words, and a thousand new faces. This can be not only utterly confusing but completely overwhelming.
Our advice is to start researching and understanding the situation. Make your way through information websites, book in time to see support groups, watch YouTube videos or read books from the local library. The more you can arm yourself with different diagnoses, conditions, and support options, the stronger position you will be in.
By being fully educated not only will you be able to make more informed decisions as an advocate but will also lead to more successful outcomes for your family.
Preparation is Key
As a parent and advocate, you will be burdened with a lot of administration, paperwork, phone calls, emails … the lot!
We strongly suggest you keep organised and prepared as much as you can! This can include:
- A diary to note all dates and appointments
- Keeping copies of all documents handy
- Folders full of appropriate documents
- Notebooks to keep outcomes from important phone calls and meetings
- Email folders for all correspondence
Not only will this be an excellent way to keep others up to date but being prepared will also help reduce any undue stress on you!
Be Kind and Courteous
As an advocate, you will be fighting for someone who is very dear to you. At times, this can blur the lines between fighting with your heart and your head. As a parent or carer, we want the very best for our family, however, we need to understand that we will be dealing with others who are often themselves, frustrated by the lack of support.
It’s important to remember that the person at the end of the phone is also a human and trying to support you as best they can. We like to remind you that being calm, informed and kind in all your communications will greatly help in the long run.
How Kameleon Group Can Help You
Any family who faces adversity will spend hours advocating for a brighter and stronger future. At times, this will seem dark and confusing, but we want to also reinforce the fact that with the right support, we will also face wonderful moments of joy and progress.
Remember, there is always a pot of gold at the end of the rainbow, and it will be worth the fight!
If you need a helping hand, we want to remind you that the Kameleon Group is a strong advocate for individuality, uniqueness, and transparency. We embrace the differences in children, young adults and adults. We create strategies that fit the criteria of social and functional importance for the client while staying true to their individual growth and personality. If Kameleon Group can assist you, reach out to us today. We are always here to support you, talk to our friendly team today.