Our son fought for years trying to be normal, became so depressed he tried to hang himself, developed psychosis, longed for friend and relationships, but kept on being rejected because he was different.
We have spent years in and out of specialist rooms, counselling rooms, psychiatrist, psychologist, Private hospitals, various programs and YPARC. Most of our daughter's years have been spent on suicide watch at home either in my bed, or sleeping on our bedroom floor. I would wake at each noise or movement she made to check on her. I taught the kids at home at time supporting them with Distance Education or Home Schooling. I fought for them to get help.
We've had little support during all this time, and lots and lots of challenges to face. Added to this I was diagnosed with Complex Post Traumatic Stress Disorder, took one of my childhood abusers to court, he pleaded guilty and spent nearly a year in jail before he was released on bail, and all of the family supported him, not me.
It's been a hell of a journey in and out of different counselling settings, and psychiatrist, I don't want to do it anymore. I've learnt a lot about coping with challenges, but I hate telling my story over and over again, especially when going for counselling. We just do the best we can with the knowledge we have. I'm not seeing anyone currently for counselling, although sometimes my GP will step up, listen and encourage me. I've got counselling sessions available through Victims of Crime, but I don't want to start again. I still struggle mentally.
My kids continue to have mental health issues, and it's been a hard journey trying to get help for them. Going under the NDIS has made it worse as there is now no case management services. Before the NDIS we could get short periods of case management through DHHS when things were bad, but now with the NDIS we can't get any.
What did not work well was:
- Trying to get help through the hospital CATT team. Having to spend 9 or more hours in the Emergency Waiting room with Autistic Children, already sensory overloaded, in a crisis, and having heaps of other people around them needing medical attention when they needed mental health attention.
- Schools with no support, and who don't understand mental health conditions.
- Rejection by community because they appear odd or different.
- Treatment of police and others associated with court services.
- Having to tell our story over and over and over and over again every time we go to get help from a different service.
- The limited numbers of counselling sessions you can get through the mental health plans. 10 hours a year just isn't enough when you have kids who need to learn how to live in a complex world that they don't fit into, especially when they have behaviours of concern and become very violent.
- Respite workers who try and force their religion on children and teens. Some staff were incompetent, and didn't have a clue! That was so, so hard.
- Lack of family support and connection.
- Having a specialist tell you that you are doing a wonderful job raising your difficult kids and saying he wished he could clone me for other kids, while at the same time having a mental health worker from Monash, say that no my child did not have autism, then decided yes she did and she was too difficult to work with, so hubby and I needed parenting classes, when we had already done heaps of parenting classes, and her parenting classes were BS, full of nonsense, stuff we had already tried which did not work in our circumstances, and lots of stories of her as a parent. It was a waste of time and very frustrating. Our GP said we had to finish the classes as if we didn't, unfortunately we would be marked in the system as being uncooperative, and would receive even less support for the kids.
- Waiting in Emergency Rooms for hours on end only to be told there's nothing the CAT team will do because they aren't at serious risk of harming themselves or others, even though the child has said that they want to kill themselves and kill us!!!! It would often come down to here take a Valium and go home. Sometimes we weren't even given the Valium! Having to stay on constant alert as a parent on suicide watch day and night for years on end has taken a toll on my mental and physical health.
- Churches not understanding mental health or the fact that people are different.
- Society not accepting or understanding mental health.
- No proper support when the young person is changing medications and are at their most vulnerable at risk of death by suicide. It's not fair to place parents with no mental health training in a position where they have to watch their child day and night. It's also criminal not letting parents know what medications the kids are on when they are adolescent or young adults, are not in a state of mind where they can make informed decisions, and the young person is sent home or back into the community with little or no support, and medication which they may or may not take, with the risk of possible suicide as a side effect of either taking or not taking the medication. That's just so wrong!!!!!! Headspace won't take kids/young people who have an NDIS plan, even if under their current plan they haven't been able to get appropriate support yet. Headspace are exiting the clients too quickly back into the community with no support. That's dangerous. Under the NDIS there is now no Case Management. How are parents and Carers supposed to know what is and isn't available in their local community to help, especially in times of crises? There is no safe accommodation for those with mental health issues when they can't be looked after at home because the parent or carer aren't well, are elderly or have died. We've got no resources in Pakenham area for those who need crises care due to mental health issues. YPARC has limited services and young people are only allowed to stay in YPARC accommodation for so many weeks a year. A lot of these accommodation type places do not cater for those who have other issues such as High Functioning Autism. Yet the respite facilities available for people with High Functioning Autism, Autism, Low IQ and other disabilities, are often all lumped in together, which isn't appropriate, and don't have any capacity to work with those who are also having mental health issues. Our schools have limited support for students who are experiencing mental health issues. Kids can't learn and do their best in such a stressful environment, especially when experiencing mental health issues. Everything provided to support a young person in distress was always short term, even though it was clear they would need long term support and management. It's like we just about have to press the eject button on society and start again from the grass roots up, rebooting the whole system.
* Names and places have been changed to protect individuals.
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While we welcome you to share your story with us, we are not able to provide clinical advice, referrals or support. If you or someone you know require assistance or need to talk to someone please call Lifeline on 13 11 14.