Friends, Family & Carers Forum

[Janna]

My teenage son has major depressive disorder and social anxiety disorder.  To date nothing has been able to help him, other than stabilise him.  As a mother/carer I struggle to understand his illness because I've never had it.  Getting my head around it is hard.  I stumbled across this today and thought that it perfectly described it and just wanted to share it.

Having anxiety and depression is like being scared and tired at the same time.
It’s the fear of failure but with no urge to be productive.
It’s wanting friends but not wanting to socialize.
It’s wanting to be alone but not wanting to be lonely.
It’s caring about everything and caring about nothing.
It’s feeling everything at once then feeling paralyzingly nothing.

Janna ❤️

[Ellu]

Dear Janna,

I have bi-polar disorder and had my first episode of major depression when I was 15. All through my youth and young adult years I struggled with the illness. I was not diagnosed with bi-polar disorder until I was 40. The diagnosis and medication made a huge difference to my life, and although I have had ups and downs since I have managed to lead a relatively normal life..

I had a career (just retired), married and had 4 children, now in their 20's.

I have no answer to help you with your problem, but I just wanted to encourage you that it is possible to live a fruitful life with mental illness and I wish your son all the very best on his journey.

Ellu

[Lunar]

Hello @Janna

I think what you wrote is so lovely and insightful to what your son and many others are going through. Although you struggle to understand his illness no one is able to completely understand what another has gone through as we are all experiencing life individually with our own perceptions and learnings.

It is so special he has you to care for him and trying your best to understand ❤️

[Former-Member]

hello @Janna

I can look at this from both sides.

I have suffered clinical depression from a youth, some reprieve, then life circumstances one after the other, ptsd, major depression & anxiety.

now have son diagnosed with paranoid schizophrenia in denial.

response from myself: i dont want my husband or my family to try and fix me to ask me many questions to ask me why but why. i want them to be there for me. to hug me when i look like i need it. to tell me they dont understand but still love me and value me the same. it hurts me when they look at me in sympathy, it hurts me when they try to advise me what to do. i have that side covered. they know nothing. major depression and anxiety as no doubt are other major mental health issues, are a lonely journey which has to be travelled.

response from my son: in denial... pushing me away... illness trying to manipulate me... i have set boundaries. he has cut off all contact. i feel that i have lost him.

outcome. i have to look after myself as i already have major mental health issue. My son cannot be helped by me. i can only be here when he falls and then all i can do is let him know how much i love him. if he wants my help i will be here for him. i have to put myself first at this time. otherwise i am no good to anyone.

what you can do for your son:  hug him as often as he will allow, smile at him. tell him you love him every day, hold him. listen if and when he wants to talk. only listen do not advise. do not give feedback only tell him that you are there for him, you will always love him no matter what. that is what he needs andwants from you.

[JennyK]

Hi Jana,

Like you I have found it extremely hard to accept my daughters illness. From a person who was bright & bubbly travelling the world to a recluse with no wish to interact with friends or family I find these forums at least gives me the opportunity to not feel alone in this.

[Solar]

Hi @Janna

I replied to someone else's post that you had commented on and given great advice.  

I have just had a look at some of your other posts and can see you have been having a pretty hard time for awhile.  I am so sorry to hear that and have a bit of a similar road with my own teenage son.

I thought the words you wrote in this post to put it into perspective are spot on.

This is what also makes it hard for others who don't care for someone like this or have not gone through it themselves to understand. Our teenagers/children are often blamed (by teachers, parents, family) for misbehaving. Which is sad.  It is the behaviour that comes out of the description you have given.  It is the only way they have of venting their frustration.  We are more able to seek help - read up on therapies that might help - ask doctor's advice - and generally be active (despite our sheer exhaustion) in trying to get help.  Our sons/daughters are trapped - without the strength to follow through with any offers of help.  And if they have seen help fail in the past - they tend to just close the door on any new suggestions.

My son says he is 'over' counsellors and pschologists etc.  At least he saw a lot of them over the years and he knows some did help.  But there were others - and these are professionals - who just wanted to get him to talk over and over about 'what it was that was bothering him' and then tell him and me 'you do know you have to go to school!'   He didn't know why he felt like he did and he sure didn't want to be told to go to school feeling the way he did!! That is the nature of anxiety and depression - you can't just label something and then move on.  

This is how I can see small steps forward relating to the words that you used so well to describe. I hope you don't mind me using the same format.

As carers for teenagers with anxiety disorders and depression:

* It is finding a small light in the cloak that is weighing them down and slowly leading them gently out by positive reinforcement of the smallest of things. 

* It is coaxing to do something with a skill that they have never done before (so no prior judgement of themselves or from others) - and definately not relating to school.

* It is keeping up links with family no matter how small or insignificant it might seem (try to get one or two family members on side as far as how to make it a positive experience and not put the focus on them).

* It is praising them for their on-line initiates to stay in touch with others via a game or other means

* It is not reminding them that if they stay home they won't make friends - (as other family members may have a habit of throwing in!)

* It is asking them if they might help with something you don't know - or a family member or a friend (usually technical - but practical can also be very helpful).

* It is seeing if they will give outside help a try but holding back our expectations that it will happen or if it works.

* It is suggesting maybe medication - to take the edge off things - and then trying cognitive behaviour therapy (but not giving up if they refuse)

* It is seeing if they will go for a drive with you (perhaps at night) - and staying in the car is fine. (exposes them to more than just the house).

* It is knowing this is a very slow road and that we have to look after ourselves so that we can stay strong in order to help them move forward.

Take care

Solar

[Janna]

Hi again @Solar,

I read the reply to someone else's post via email and want to thank you for taking the time to tell your story as well.  

I think it is an interesting journey to talk about in retrospect.  I think we all start off with the good intentions of getting our child to re-engage with school, as if it is the most important thing.  Through the passage of time and with experience we come to realise that school attendance is really not the main problem, it is our child's mental health.  Once that is accepted it shifts our perspective.

Unfortunately, many counsellors would focus on school attendance, particularly if affiliated with a school.  My son bypassed school counsellors and went straight to a clinical psychologist and then psychiatrist.  Her approach was not too school focused at all, but rather to explore his anxiety and work on mood issues.  I'm very fortunate that my son likes her and has persisted with her for 4 years now.  He's gone through phases of non-attendance to therapy as well, but this has always been in conjunction with worsening depression and merely reflects his hopelessness.  Her current therapy goal, since his discharge from the program and admission to the emergency psych unit, has been simply to keep him active and engaged in life, even if it is severely limited.  I'm happy with that goal and happy that he is willing to attend on a weekly basis.

You've made some great points about the small steps we can take.

Again thank you for your thoughtful response and I look forward to further communications.

Janna 

[Solar]

Hi @Janna

We had a brief experience with a school psychologist when this first happened when he was 6 and she was completely off track, blamed my parenting which looking back I felt was just textbook stuff - she had no idea.  I knew something serious was wrong but it took us years, because of his age, to get anyone to listen. The private psychiatrist did listen and take his suicidal thoughts very seriously. He also liked her the best out of the help we sought. We still didn't kind of move forward -  perhaps we didn't see her often enough as we couldn't afford to. She also wasn't keen to change his medication even though it wasn't working (might have been his age) so we had to go under the doctor - who had to make sure we were also seeing a counsellor of some kind. His second medication has certainly helped and taken the edge off that slipping down into the gloom - he hasn't learnt to manage the anxiety completely (but has worked on it) - but he is also not depressed like he had been. Is your son on medication?

Student welfare officers were also usually too busy with what they told me were 'more serious cases' to register on their radar. So we kind if slipped through the net - and had to find private help.

Poor you being next to a school!  That really does rub it in your face! I remember I used to watch through our front window as other primary school kids went off up to school - happy - sometimes skipping - or chatting...sometimes with their parents....and I felt such an incredible failure! Unless you have been through this - others can't possbly know what we go through.

Good luck with the form filling. I do hope this works for your son or is a step in the right direction. Sounds like you are hanging out for him to see some light - it must be so painful for you to watch. I am sure there will be light somewhere along the road. It is so exhausting, isn't it.

Take care

Solar x

[Janna]

Hi @Solar,

I can't believe that your problems started when your son was so young.  In hindsight my son also had a heap of small behavioural issues happening in primary school which culminated in nothing more than a psychometric test and a brief suspension from school.  At this stage he still was attending school.  Year 7 seemed to go OK, although working well below his potential and I was getting feedback from his teachers that he was not engaged and extremely non-communicative.  His problems really began in Year 8 and started with increasing time off school, but he achieved this by lying that he felt sick or was too tired, or whatever, until the true school refusal began.  By Year 9 it was full on non-attendance and the rest is history.

My son has been on anti-depressant medication for approximately 3 years.  He was initially placed on one medication with little effect despite dosage increases.  After giving this sufficient time he was taken off this and placed on another antidepressant, which again appeared to have little effect, but with less side effects.  The first med caused weight gain.  This was increased and appeared to have some therapeutic effect, but not enough.  Most recently he has been placed on a second antidepressent in conjunction with the first.  I dont personally see any major differences, other than he is stable in his mood at an acceptable level, but that could be purely because he is not leaving his room and therefore not facing any stress.  His mood tends to fall apart when under any pressure.

With every step I have ever taken, and trust me there has been alot, I've always hoped that it would be the catalyst for some change.  Despite 4 schools and 2 hospital admissions totalling 9 months, not to mention psychotherapy and medication, nothing has changed 😞   It is most definitely exhausting.  Has your son been given a diagnosis as such? and has he ever been tested for other things, such as ADHS, Asperger's, etc?

Janna 

[Solar]

Hi @Janna

My son was diagnosed by a paediatrican with Generalised Anxiety disorder when he was 6 or 7. Later the psychiatrist added 'Social anxiety' and depression to that. He has not been tested for Aspergers or ADHD. Has your son? What is your gut feeling?

I think there are many overlapping symptoms between Aspergers and anxiery. My son used to have a big aversion to loud noises and bright lights and crowds but he seems to have worked through that and can now go to the cinema and concerts ok.  My gut feeling is my son does not have either of these. He is bright...but didn't have the social skill issues common to Aspergers, just anxiety that made it later hard to make new friends (when primary school friends went to different secondary schools) and when we changed high schools...as you do...like you, hoping it might help, but deep down knowing it won't!!

We also tried Distant Education for a year as it is on-line and I have great praise for them...they have had a huge increase in kids like ours applying and their numbers doubled just recently. They now have welfare officers, the teachers ring you to discuss issues and they run a few get togethers during the year and they will adapt units of work for what each student can manage (very helpful when lots of school has been missed and things like maths fall by the wayside). It can be accessed from anywhere in Australia and was originally set up for kids living too far away from a high school, travelling, or missing school as a child actor or dancer etc. My son, however, found the pressure to do the work with someone at the other end waiting for it..too great and so struggled to keep up and be motivated to get up and do the work.  

I just can't help thinking though, if there was consistent help out there for our kids, especially in your case, that yu wouldn't have these set backs,  But you get one good thing and then its gone...or the person is gone. We had issues with this happening in a school refusal unit run by Catholic Services (Centrecare).  Initially we were told my son was too young...then when we went back desperate several years later..they said there was a waiting list but they'd offer individual and some parent guidance for us from counsellors who worked with kids in the program.This was so nice of fhem.I was so relieved...only to then find out the unit was closing!!! So that was the end of that!! It seems a common experience...running into dead ends, I do hope the mental health support for young people continues to improve, as it has done, but it has a long way to go. And consistency of programs and staff and follow up is vital. It just isn't there for us, is it.

Hopefully your son will start to communicafe with you a bit more now that school is out of the equation. You just need support...and its too ad hoc. We need a system that does not let our kids down. 

Meanwhile I'll ne thinking of you and hope things improve, no matter how small.

Take care

Solar x