Friends, Family & Carers Forum

[Janna]

It’s been a long time since I posted on this forum and I would like to apologise for being so absent. I’ve been particularly busy dealing with this, that and the other, and when time permits I take much needed time out to either paint (my passion) or simply watch some inane TV programme.  I’ve been really mindful of self-care and have come to realise that I need to balance things out by “changing the channel” and getting my headspace as far away from mental health issues as possible in order to maintain my strength and be an effective carer. 

Things with my son have been up, down, good and bad (and everything in-between).  I thought I would let you know where we are now at.  At the beginning of this year he was still enrolled in an SSP school, but refused to attend and remained holed up in his bedroom.  His enrolment was terminated and his case was referred to a Transition Support Teacher, who upon meeting and conducting an assessment recommended that he (or we) apply to Family & Community Services (Ageing, Disability & Home Care) for a “Transition to Work” program, which is a 2 year funded post-school program for young people with a disability with moderate to high needs, with the aim of assisting young people in gaining employment.  The application process took a long time, however, just last week we received good news.  My son has been accepted for funding in the “Community Participation” program, which is actually better than the Transition to Work program because the funding is ongoing, as opposed to being limited to 2 years.

For anyone who may be interested in knowing more about these programs for young people with a disability (including mental health disability) here are a couple of links:  

https://www.adhc.nsw.gov.au/sp/delivering_disability_services/post_school_programs/transition_to_wor...

https://www.adhc.nsw.gov.au/sp/delivering_disability_services/post_school_programs/community_partici...

So now we embark upon the next chapter of my son’s incredibly difficult journey with major depression and social anxiety.  I am utterly confused as to how this is going to proceed, but have come to learn that now that he has funding there are many different pathways which can be taken, mainly with external accredited service providers.

My son’s case has been referred to a national disability service provider and tomorrow we have a lady coming to the house to do an initial meet and assessment.  After chatting with her over the phone she is recommending that my son be allocated an outreach support officer (or two) who will begin by coming to the house and establishing some sort of bond with him with a view of being able to determine what is best suited for him and slowly but surely getting him reconnected with life.

I’m wondering if anyone out there has any experience with either of the above programs and whether they’re able to pass on any advice??

In the meantime I’ve been invited to attend a “Transition Careers Expo” for school leavers with disabilities next Tuesday where I believe service providers will be able to assist with information on:

• Options for school leavers including SLES (School Leaver Employment Supports) 

• Specialist employment services (DES) and support
• Further education and training - TAFE and university
• Community supports and agencies
• Recreation and leisure options
• Care services and parent / carer support networks
• Therapy and support services

I’m finding this all quite daunting at present but I’m also happy and relieved that we yet again have some direction. Anything would have to be better than to have a child locked up in a bedroom.  I remain hopeful that this will be what helps.

Love Janna ❤️

[coffeegirl]

Hi @Janna
I don't have a child, but I have been following your story. It's great to see that things are tracking along well after some tricky times.

How did the phone chat go? Has your son connected well with the outreach support officer/s?

[BeHappy]

Hi @Janna,

I also don't have kids but I just want to say that I think you've been incredibly resourceful and strong. I can't imagine how challenging this is, and I admire you're perserverence with finding solutions, trying new things, and most of all, keeping hope.

[Janna]

Hi @coffeegirl

I'd like to report that things are going well, but their not going that well .... yet.  My son has a really negative and resistant outlook towards this new direction and is not at all keen to meet with an outreach support officer.  He very insightfully stated that "this only deals with the external, but my problems are internal".  Unfortunately he can't see that external is linked to internal. He appears to have a very active and powerful self-sabotaging part that resists help.  I've lost count of how many times he's been thrown a lifeline, only to ultimately reject it.  Nevertheless, we have a meeting set for the 19th in which he will be introduced to his outreach officer.  Fortunately the organisation fully understands that there will be resistance and difficulties and are prepared to pace things very slowly and fully within his comfort zone.  The one thing that he has expressed interest in is doing fitness together with a personal trainer.  This would be a really positive step and will be covered by his CP funding via the NDIS as long as the trainer is NDIS registered.  

I was able to get my son to do a bit of shopping with me yesterday following his doctors appointment for his ongoing Vitamin D deficiency.  We were under 1 hour just picking up some groceries and as time went on he became increasingly more aggitated.  When we returned to the car he exclaimed "now I know why I don't like going out.  I find people so annoying".  We chatted about this on the way home and he revealed that he hates people and everything about people - the way they act, talk, interact, etc. !!!  I have a suspicion that he is confusing his own feelings of overwhelming anxiety with irritation and anger and deflecting his own internal state outwards to blame others in a form of projection.  I've encouraged him to discuss this with his psychologist.  I did note that throughout our excursion he was very socially awkward- unable to look people in the eye and easily embarrased, even by me LOL.  He hated it when I chatted with shopkeepers and was nudging me and giving me the look to stop because he was feeling uncomfortable.  He does the same when sitting together in a waiting room for one of his appointments - I'm not allowed to talk to him or with anyone else.  Argh!

On another note he had a psychiatric review on Tuesday and expressed a desire to be taken off meds because of emotional blunting.  He claims he is unable to feel his emotions properly and therefore can't even identify what is what.  His rational is that unless he can feel, he can't truly heal, and from a certain perspective this is very true.  The problem will lay in whether he is able to tolerate his emotions in a healthy and safe way.  We are therefore now embarking upon a gradual reduction (but not cessation) of meds over the next 2 months after which he will be reviewed again.  Fingers crossed that they don't come flooding back in an intolerable way like last time.

Tonight I'm taking him out for dinner to a girlfriend's house.  Strangely he is keen to chat with her about some things and see her pets.  He feels comfortable with her and knows that she is insightful, understanding and completely non-judgmental after having had a partner who suffered with, and ultimately succumbed to, an undiagnosed MI.  I'm happy that he feels connected enough with her to want to do this and know that she will be able to listen empathically.

Onwards we go with hope. 

Janna ❤️

[coffeegirl]

Wow @Janna - your son shows a lot of insight! Even though he is resistent to some things and at times misdirects what has caused his agitation and other negative emotions - he seems quite open - even compared to the "regular" teen (if there is such a thing!). This gives me so much hope for him!

Is he as open and insightful with you about his feelings when he's not on medication?

I'm in awe of the way you work with you son. It sounds like a great partnership. I know it must be tough though.

I hope that he hits it off with the support officier *fingers crossed!*