I don't know how to help my son

[CaringCarer]

Hi everyone,

Where to start... well, I'm the parent of two teens (19m and 17m).  My oldest has significant neurological and mental health issues, including ASD, intellectual disability, anxiety, OCD, and atypical anorexia.  Because of where we live (regional/remote), help has been hard to come by, and what there is has long waitlists.  19m was in an inpatient program last year and has been through several different medications, one of which had such a bad reaction that now he's not keen to try again. 😕  He has a regular psychologist he sees fortnightly but that's about it. 

Honestly, I am burning out.  His symptoms are getting worse.  What was once a bright and happy young man now barely leaves the house and has a meltdown at the thought of doing basic things like showering.  I have to stop him from washing, washing, washing and flushing, flushing, flushing... over and over... it feels like every day is a battle to stop him from harming himself in some way, and because he is not neurotypical, a lot of the advice doesn't work/doesn't apply to our situation.

I don't know what I'm actually asking here. I have mental health issues of my own and I know first-hand that the right treatment and support can make a huge difference in our lives.  I just wish I had the tools to help my son.  I have taken him to doctors, who refer me to the mental health service, who in turn interview us and say they'll be in touch but never call back, so I chase them for months... I've had to drag him to hospital in crisis, where they assess and stabilise and say the same thing... rinse and repeat...   We are a one-income family and don't have the means to just pick up and move somewhere else, or hop on a plane and travel to a bigger city to get treatment.

Anyway, thanks for listening, all.   

[Ru-bee]

Hello @CaringCarer 

I wanted to stop by and welcome you to the forums. I'm really glad that you've found this space to talk about what you and your family are going through.

I find myself feeling frustrated just reading about the run around that you're facing when trying to find the right supports for your son, so I can only imagine how exhausting and disheartening it is having to go through this cycle first hand. I know that being in a regional area just makes accessing the right treatment that much more difficult too. I'm wondering if you might be open to giving SANE's support line a call on 1800 187 263? They can offer resources and help to explore some other support options that they may be aware of, as well as listening and providing you with some support as I hear that you certainly need it too.

I wish I had more to suggest, but I do want to let you know that the community is here for you. 💜

[Alisse]

Hi @CaringCarer 

I can relate to your story, as a single mum of two boys (24 &21) One with a mental health diagnosis (bipolar) and the oher a physical disability (CRPS & IIH) while living in a rural area.  

It sounds to me like you're doing an incredible job under such challenging circumstances and it's no wonder you're feeling burnt out.  Trying to support a loved one with complex mental health and neurological needs, especially in a remote area, is extremely demanding.  It's so clear from what you've shared that you've fought tirelessly for your son, connecting him with services, managing crises and advocating for his care when systems fall short.

Burnout is completely understandable when you're balancing his needs with your own mental health and family responsibilities.   Many parents in your position, (inclunding myself) feel the same way, like they're on an endless loop without the right support.  It's heartbreaking when practical help doesn't seem to be available or accessible despite your best efforts.

It took four years of endless medical appointments and specialists to diagnosis my son's rare physical disibility, so frustrating and exhausting as a parent and carer.

Even though you might feel isolated in this, know that there are others who understand and share this experience.  Small things, like connecting with parents who get it or getting support for yourself, can sometimes be a lifeline.  Remember, taking time to look after yourself is an important and essential part of being a carer. 

Just the act of reaching out here for support, shows your strength and your commitment to your son and family.  

For me, I received help through Carer Gateway and highly recommend their services.  

https://www.carergateway.gov.au/

You're doing a great job, just don't forget to look after yourself, even finding short moments of rest for yourself, can make the load seem lighter.

Kindly Alisse

[CaringCarer]

Thanks, Alisse, for your kind words. I have previous history with Carers NT (didn't find them particularly helpful at the time), but that was before it was all rolled into the Carers Gateway. I will reach out to them too.

[CaringCarer]

Thanks, Ru-Bee, for your words of support. I just wanted to say that I took your advice to call and have arranged to be part of the 1:1 support program. Thanks again.

[Jynx]

Hey @CaringCarer just a lil tip, if you want other members to be notified that you've responded, you can tag them - use the @ symbol and a drop down will appear, and you can choose their name. If their name isn't there, you can type it out and it should then appear for you to select, then it will show up in blue, like this: @Alisse @Ru-bee 

😊