20 days ago
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Parent/Carer Burnout
I am a newbie on Kindship, so not to sure to show more or less information.
My 5 yo was diagnosed with ASD just before he turned 3, last year we were told he has delays and ADHD. I have approached NDIS about possible respite has I work full time and care for him and my older children solo. And explained that we lack sleep even though he does take medication, the violent outbursts are becoming regular and I then have to take time off to heal and then the constant tired/exhausted parent
. Has anyone others used respite? What activities do they do? Was it difficult to find? Any advice information would be greatly appreciated,
4
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Sending so much love. Do you want the respite for your son or would you like something for yourself? Have you ever spoken with Carer Gateway? They are really helpful. You can access respite for yourself, weekend retreats etc that are funded by them.
Kindship also run retreats, the next one is in June. They’re located in the Hunter Valley NSW. There is potential to get some of the cost funded with your sons plan. I can put you in contact with Sandy and Steph who run them if you want to talk about it more. I can’t recommend these retreats highly enough!
Hey, Welcome to Kindship 🧡 So great you found us! When speaking with NDIS re respite, you want to use phrases like “sustaining informal supports for the person with a disability”. Whilst they give lip service publicly to us parents and carers, if we mention the word respite, they often throw it back at as. Which is disgraceful. Sustaining informal supports is from their legislation. We have support carer services that work with our daughter and have for quiet a few years. She has goals around building independence skills (which a carer works on in our home with her) ie. self care, making her bed, packing own lunchbox, eating at dinner table etc. Then she has a goal aroun d safely accessing the community and building independence from her informal supports. This gives her community access funding. As a family, we use those to times to recharge and do things that Immy doesn’t cope well with ie go grocery shopping, to hairdresser, sometimes lunch out etc. We use companies near us for support carers, but they can be hit and miss. Important you find a carer and service you and your son vibe with. I know other people from Kindship have used HireUp too. Again, it’s about finding the right person. So glad you posted and sought advice. Welcome to the community x
Sending lots of warm hugs! Welcome to Kindship! Respite is hard for this age as they say it’s “parental responsibility” so go in with everything Sandy said and with clear points in mind about how you cannot fulfill your responsibilities as a parent when at burnout stage. It’s hard. Good luck ♥️ Definitely get onto carer gateway- there is a few ways they can assist ♥️