Your child has been diagnosed with a condition and immediately you turn to the internet.
You probably read about numerous therapeutic interventions that may treat this condition, a clinician half way across the world who specializes in this, a specific diet or therapy intervention that has been shown to help some children with this condition, parent’s blogs or Facebook groups with a plethora of information.
What should we do?
First, as a physiotherapist, I’ll caution you that not all websites contain accurate information, so be careful where you’re looking.
Ask your physicians and other medical professionals for reliable resources.
As the parent of a child that has any medical condition, it is important that you understand the pathology and the long term effects of this condition.
It will definitely be surreal as you sit and listen to a physician explain the condition.
If you don’t understand what their saying, ask them to repeat and explain in it different terms. As a lay person, you may be unfamiliar with the medical terminology that is used.
Knowledge is power, and this will increase your ability to advocate for your child and their needs.
There will be numerous decisions to make, now and moving forward.
Be straight forward, and ask people to explain to you what they’re doing and why they’re doing it. Don’t worry about seeming ungrateful or annoying those people who are helping with your child.
Professionals will applaud your vested interest in your child’s care and hopefully they will initiate being more informative.
You may be referred to numerous specialists to confirm the diagnosis or create a differential diagnosis.
It’s beneficial to have one source to see all of your scheduled appointments (and those of everyone in your family).
This will prevent you from overbooking or overscheduling yourself during any day or week, and from creating schedule conflicts between professionals.
At the beginning of this journey it may be helpful to connect with friends and family for house chores, carpool, and respite breaks as needed.
Despite the turmoil occurring in your own life, people you know will show up because they care about you and this little person in your life.
Let them in, to your comfort level. It takes a village, and you’ll feel the benefits of creating your own little village, early on!
Being a parent is probably the most challenging and most rewarding job you’ll ever have in your life.
This may be overwhelming, nonetheless as a parent it’s amazing how strong we become when a little life depends on us. If you’ve read nothing else, let me leave you with these thoughts
Knowledge is power! It takes a village! Stay calm and march forward!