Do you advocate for your children, and for your family?
Over the past few months we have been on a steep learning curve as parents, hobbling along with little sleep and increasingly frayed nerves. I was blessed to spend three weeks in Sydney over the school holidays in Sydney and step back into my safe, loving family home. That might sound a bit over the top but when you take into account that on my second night there I found myself collapsed in the hall a mess of hysterical sobbing so dramatic that I think my dad worried that someone had died and that I left 3 weeks later having not done a load of washing or making a single meal you will appreciate that I was feeling well and truly spoiled!
Most of this recent journey center on my oldest boy as he navigates the sometimes wonky path of toddlerhood. I could write a series of posts call “When your toddler doesn’t…” and then fill in the blanks with eat, sleep and talk. (It was the ongoing lack of sleep ~ his, and subsequently our whole households ~ that led to the aforementioned hysterical breakdown!)
Through it all it’s become clear to me that it’s so important to advocate for your child, and for your family. This is what I know…
- Don’t just accept a referral or a waiting list or a ‘no’!
- Look into who are the best care providers you can access – word of mouth is crucial unless your Doctor really knows the specialist they are referring you to.
- Listen to your instinct and trust that you know your child, and your family, better than someone who has taken a 10 minute case history.
- If you don’t feel listened to or if something doesn’t’ feel right then find someone else – doctors can be incredible but sometimes they aren’t. It took me seeing 3 speech therapists to find the right one for Bear and even then her receptionist initially told me that her books were closed but I sent her an email and she took us on. She is amazing and my Bear is blossoming as a result!
- Talk to your doctors about what help you can access and ask questions of friends and fellow parents. The GP we see is great but he didn’t tell me about the EPC plan we could access for Bear – that was something I discovered by accident (though he was fab at getting it sorted for us and bulk billed his time for setting it up) and helps us out with the cost of it.
- Don’t be afraid to ask silly questions or to go back to see someone a second time – there are no silly questions and often, no one ‘right’ answer.
- Never be afraid to make an appointment – you can always cancel it closer to the time if the situation has resolved itself. I booked an appt with the paed last week for one thing and when the time came to see her today I had a list of other things to discuss and was so grateful we were booked in.
I’ve been holding off sharing Bear’s journey because I didn’t know where it was going to land us and despite being only 2, it’s his life and his story and I would like to respect that. However, we are at a point now where I feel what we have been through might help other parents and families with the same questions that we had and so here we are. (Just to skip to the ending, Bear has a speech disorder with no specific name nor cause but it means he is unable to move his top and bottom jaw independently. As a result he is unable to make certain sounds and thus say certain letters. This has led to a significant speech delay, a language delay (who knew – those are not the same thing!) and an understanding delay. In March he was at best 20% intelligible and rarely used words to communicate. After only a few months of working on it ~ once we found a good speech therapist ~ he is closer to 90% intelligible and talks readily. There is no global disorder or delay diagnosis or concern with him.)
Phew! So that’s us….how have you been?