Louisa Claire

Family

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?

 

 


Thoughts on “Do you advocate for your children, and for your family?

  1. Good on you Louisa for sticking up for Bear and trusting your instincts! So happy to hear that he is blossoming with the right support! Sometimes we just have to push a little bit, don’t we!
    I also hope Blue is not doing too badly :( poor bubba.

    Hugs to you xxx

  2. Thanks for this Louisa. Yay for Speech Pathology! And love your last point – make the appointment, even if you end up cancelling it, or even if you go, only to be told there is no reason for concern. Better to be over-anxious (to a certain extent) than to miss something important.
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  3. When my youngest Raf was born with complex medical health issues hubby and I had to step into the shoes of advocate. We had a paed who said “oh that sacral dimple is just cosmetic”. Me pushing further ended up in a diagnosis of spina bifida and spinal surgery at 8 months. Another dr telling me “oh he snores just like his dad, cute” ended up with him being diagnosed with the severest sleep apnoea the sleep team at the kids hospital had seen and CPAP and o2 monitors. They couldn’t believe we hadn’t already lost him in his sleep. I hate to think what would have happened if i hadn’t been an advocate and had a strong mummy instinct. Best of luck for the rest of your journey with your little one

  4. Gosh it cam be so hard to stand up for our kids and ourselves, especially in the face of ‘experts’ can’t it!

    I remember when we were looking for schools for our twins only to be told by the first three we visited that their policy was to separate twins without exception. One principal even told us we were ‘holding them back’ by not forcing them apart, despite never having even met them! Thankfully we found an awesome pysch, had a great kinder teacher backing us and found a school who’s policy was ‘whatever works for the children’ and they have blossomed.

    Advocating for my kids is hard but it is one of the things I feel most proud off. Good for you for doing what you know is best for your boy, may you all continue to thrive!
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  5. I am Mother. I AM an advocate.

    I have 3 kids. Mr 15 has HfA (high functioning autism), Miss 13 has severe ADHD. Miss 8 has both. It’s probably not surprise to anyone that I don’t have paid employment. Being their advocate IS my job. I study and arm myself with the latest information, studies, statistics, mainly in order to educate the people who deal with my children. Along with parenting I also provide a decoding service between my children and the world, nursing, psychological assistance, nutritional advice, medication, diagnosis, making appointments, keeping appointments, dealing with Medicare, Centrelink and 3 separate schools. Of those schools, 2 are great and supportive. One – a government girls school of 1400 – doesn’t have an integration aide. Apparently I’m the only parent EVER to disclose my child’s diagnosis. Guess which school I visit “officially” most often? I liaise with other parents as well as the schools, so my children are accepted as and for themselves, not for what they can’t help doing. And that they are not punished, discriminated against or ignored for the behaviours that are not neurologically available to them. Oh, and they won’t grow out of Autism, and the latest studies are getting clearer and clearer that the ADHD won’t be grown out of either. And along with all that, I keep house, clean and feed my kids and try and maintain a strong and healthy marriage.

    I am Mother. I AM an advocate.

  6. Speech is such a tricky one. People always used to say to me when I had concerns with my daughter, don’t worry about it, she’s only little, she’ll catch up. But I was a strong believer that yes she was only little and I didn’t want her to be ‘catching up’ her whole life. Life shouldn’t be so hard, if you need a little help you should get it. Turns out she did need speech therapy and she caught up. Now she is 7 and after 2 years off she has been recommended for speech again, other issues that specialists have confirmed won’t be outgrown. If we’re not fighting for them, who is?
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