Friends, Family & Carers Forum

[Sophia1]

I just found your post and wanted to let you know that I feel for all of you including your unwell son.

@Alicia2022 

You have not posted for a while and may not wish to.

This I respect.

Please take care

Sophia

[Alicia2022]

Hi Sophia, thank you for your support. Very much appreciated. 

It has been now a few months since that first post that I wrote as a very scared, heartbroken and stressed mum.

I haven't posted since because I found that eventhough people's intentions were good it did not help to have to answer questions and not receive advice on how to handle it.

I understand, its very hard to give advice to someone who is trying to help a mentally ill/ unstable person because mental disorders are so unique to each individual but all I needed in that very desperate time was a sign of hope and a path to follow. I didn't realize at the time that our case was one of those unique cases that hardly anyone has experienced. So it was a long shot expecting someone to share their experience and testimonial. 

I do think people should also be more careful when offering their opinions on such a serious and delicate topic unless they are a professional, sometimes less is best.

In a way, writing about it made it all more real and helped me explore my feelings around it even more...as much as it hurt.

We have since received professional help for our son who is in a more happy stable place. Happier than ever in his life! 

The process was so slow that my husband and I took it upon ourselves to really understand him and research and find ways ( practical everyday steps) that would help his thoughts and help him understand what he was going through as he was extremely confused about everything.

The first couple months were very tough and stressful. But I thank God we are now on the path to recovery, healing and building new possitive goals that will ensure he is able to build a good life for himself and function as a good individual in society.

We work as a team with him and are very transparent with him.

I do not wish to go into detail in his diagnosis or treatment but only wanted to update you and everyone interested about our situation. 

Thank you once again Sophia for your time, take care 🙂 

[tyme]

Dear @Sophia1 , I believe the above sincerely heartfelt post was for you 🙂 💜

[tyme]

That is an incredible story @Alicia2022 - thank you for sharing. I am so pleased to hear your son is now receiving support. You have indeed worked as a team.

As you mentioned, I have also felt that when I write things down, it helps me explore what is happening, and thus gain a more subjective view. 

Writing on these forums has also played a huge part in my recovery in that I was able to share things I found difficult to say in person.

I look forward to hearing how you and your family go in the next few weeks and months.

Kindest, tyme

[Alicia2022]

Thank you Tyme! ❤

[Alicia2022]

Hi Tyme,

Thank you for your kind words and for taking the time to tag  Sophia on my response ( not sure what happened there, I am clearly no expert posting here. I thought I had pressed reply to her message lol)

I am very glad to hear you are recovering from your situation! 😊

All the best and do take care❤

[Sophia1]

I sincerely apologise about several notifications.

This is another edited version purely wanting to ensure that I not be intrusive or invasive.

Hello @Alicia2022 and family

I very much  appreciate your responding to me and want to let you know that this in turn helps me so very much also.

I too have felt very alone on these forums on numerous occasions due to my own unique circumstances with an older son.

He went missing for quite some time and on several occasions.

He fled the state in terror.

He has had a very long lonely journey and sadly experienced hospitalisation within public system in several states across the country. These stays only serve as bandaid options and further exacerbate the illness. The patient is left losing all trust and feeling more unsafe. Diagnoses are not reliable.

After the last two hospitalisations with much longer stays, is now been deemed as  having a very serious, long term untreated serious mental health illness. Still no external help or medication. They  also believe as I have known for some time that he is definitely on the autism spectrum. He stuttered from an early age also. He has been bullied and teased by peers and ostracised by the education system.

I have never given up on him even though others have.

Other family members have tried to advise ( as you mentioned the last thing needed) I have been told to let him go! How does one let go of a child whether an adult or not?

He is still there reaching out to me when he needs me through his illness.

This is not easy to experience.

I am his mum and will always love him and be there for him when I can. This I tell him consistently when allowed to respond. Most times I am only able to listen or read.

He is a man now.

He has had his IQ tested during a recent involuntary hospitalisation as he has never accepted being unwell.

They cannot believe that he has probably lived with this since the age of 8, now nearly 43.

They cannot believe that he has survived this long after experiencing what he has. I will not go into details.

To this day he refuses to accept any diagnosis other than slight anxiety.

He therefore does not see himself as unwell just existing in a cruel world.

He has never had long term therapy of any kind or a regular gp; social worker; counsellor; mental health worker.

He does not believe that he has mental health issues.

I tell myself that I understand if a person adamantly believes that they are not unwell and that the  rest of the world are trying to persecute him, it makes sense that he would refuse treatment and medication for an illness that he believes he just does not have.

I have said to others would you take medication or accept counselling if you did not think you were unwell?

He exists within a different plane to the rest of us.

I believe that the medical world needs to pay more attention and spend more time listening to parents or  a parent who knows their child the best.

He has chosen to keep his life very secret and private from the world. A safety net.

His father and I  divorced a long time ago and he along with myself cannot ring him, text him email him and most of the time visit as we do not know any information. He hides all information of his communication.

I do maintain contact with his dad relating to both of my sons. This has helped them see that we can still communicate and be united in support even if not together as husband and wife.

I have on occasion been able to visit my older son during hospitalisation after being contacted by  the different hospitals.

He is very clever with IT and has studied at great lengths security.

I have carried him since he was a baby when all the specialists did not listen.

I have lived my life holding this to my heart not sharing with work colleagues or friends as the illness is so stigmatised and my son asked me to not tell anyone that this diagnosis has been mentioned.

I withdrew from many friendships where I constantly heard about family joy and successes.

I have been lost for so long

There are still most in my life who are unaware.

I have remarried and my now husband honestly acknowledges that he  just does not understand. This I can accept. He supports me in other ways.

It has been such a lonely journey. It always will be. I know this deep in my heart.

I  too felt unwelcome by some who chose to leave comments that were so very insensitive on the Carer side of the forums.

I met a few who whilst unable to relate to my situation were inclusive inviting me to join in on other threads.

I have not yet met anyone as a member of carers australia who has a child with this serious illness untreated for so long. most are medicated whether in touch with their family or not.

My younger son was also traumatised growing up with the behaviours that accompany mental illness affecting other family members within the same household.

I hope that this does not bring you further grief.

I certainly am not writing to try to advise you. I am here purely to let you know how much you matter. All of you.

I  am hoping that sharing my traumatic story can bring you some sense of not being so very alone with a life that no single person would choose.

Our stories are so very different of course; as they would be.

We still have both felt alone with them though.

You have taken the path I had hoped you would choose and given your son space to be heard, feel valued I hope and lovingly held by his family. Whichever path you had chosen was your choice to make. So important that it be your choice.

Your holding his hand throughout and holding each other has brought you to where you are now.

I offer no advice as I agree every situation is  different and trust me not even highly trained specialists can advise you on everything. Only the medical side.

Follow your hearts as you have done.

Your son will sense this and above all; this is what has helped him  reach the space where he is now.

this has also helped your family be united and be there for each other.

It has been an honour to meet you.

Again should you choose not to reply, I  do respect your wishes.

All the best for now and every step of the rest of your journey.

Holding you in my thoughts.

Sophia1

ps if you want to write to anyone type @ then a drop down box appears and you can click on the name of the person whom you want to respond to.

I also apologise about several notifications.

[Alicia2022]

Hello @Sophia1 ( thank you for this tip 🙂 ), 

I very much appreciate your words and you sharing the story of your son and yours.

I was reading your story and really felt for you both. You both have endured alot I'm sure. I am very sorry to hear about his struggles and his hard time accepting his condition. I can only imagine how cruel and scary the world seems to him. Your love as a mother is very special. I really hope his journey crosses path with the right people who can help him, he is very blessed to have a listening ear in you. 

Our son is also in the spectrum, he struggled accepting his diagnosis which contributed to his mental state. He now accepts it and since then understands himself and the world much better. Ofcourse been a teenager is confusing in itself and we are just at the beginning of this journey but we are learning together as a family and try to be very transparent and communicate with him and he with us.

But mental illness is such a unique experience which varies from individual to individual. I think that is a thing people don't understand. To be able to help a mental ill person, many many hours need to be invested. I can't blame people struggling with a mental disorder for not trusting professionals, I struggle to trust them myself as they don't appear to be very confident when giving advise. And poor advice can result in a catastrophic result that sometimes is not worth the risk. People don't seem to understand that a mentally unstable person is very fragile, that any advice given should be thought carefully and not given cautiously.

I know my husband and I feel drained and its only been a few months into our journey, so I can only imagine the toll it must of taken in you as a mother! I am very happy to hear you found my response helpful. I too found helpful your message as I feel like eventhough we have different situations, we share the grief of a mother in similar journeys. 

I really appreciate you been open about that very private part of your life. I also don't like sharing our situation with people as they feel they have to say something or give advice that most of the time causes more damage than help ( I learnt that very quickly unfortunately). But I pray mental illness will stop been stigmatised and hopefully we as a society can become better informed and open about the subject.

I imagine its already very different to when your son first needed that help as a child. But there is still a long way to go to change a system that seems stuck.

Please take care, all the best for you and your son. 

Thank you once again❤

I also respect if you don't want to reply.

[Sophia1]

Hello @Alicia2022 

I thank you for again replying and sharing some of your story.

you are helping me so much in replying at this time; reassuring me that I am not invading your personal space.

There can be an understanding between people on the forums where there are feelings of overwhelming proportion in trying to help our family members.

I agree with so much of what you have said in relation to reaching out for help and support only to feel left questioning systems where one size does not fit all.

I would love to continue building a connection with you.

I will reassure you that at all time I will respect the fragility of our situations.

I will be off line for a few days; unsure how long or short.

Today is my mothers’s funeral and I need to get through this. I am trying to grieve which is so hard as the pile of grief grows.

As you can imagine older son will not be attending. He has for several years not attended any family gathering no matter how small.  
This I understand and do not mention.

He does randomly text me on some days up to 20 messages non stop.  As I cannot be with him; I sadly could only notify the loss of his Nana by text. This broke my heart. I am very much a one to one person.  I then sent him a copy of the notice in the paper for him to feel included. I wanted him to read his name and the words much loved grandson of his Nana. Some time he accepts love mum. Other occasions he responds angrily.  He has had such an isolating life where he fears persecution and his safety so hides from the world. Currently he is accepting each response from me of love mum. I feel that he feels a part of this within his way.

My younger son will be at the funeral and by my side when I give some readings all mentioning much loved grandsons.

I will get back to you when I can.  You are hopefully feeling less alone with this life situation.

Again I think that I have connected with you at this time to help all of you and myself feel more in touch with reality and such a strong depth of love for our children no matter what. 

Take care

Hopefully speak when you can as will I.

Sophia

[Alicia2022]

Hi @Sophia1 ,

So sorry for such late reply. 

Thank you again for your message. 

I am very sorry to hear about the passing of your mother, my sincerest condolences, I hope you are well supported in your process of grieving. 

We cannot choose how our children react to circumstances and that sometimes is hard when we ourselves are facing our own emotional battle but it is very important you focus on your process so you can heal more effectively. I hope you understand where I am coming from

I have had a few stressful days so have not really been checking my messages. I find sometimes it helps me more not talking about my son's issues as at the moment it is an everyday battle and I don't want it to take away the focus of my other children, husband and life itself.

My son is a teen so he is a roller-coaster of emotions.

I am not sure how often I will be checking my messages so please forgive me if I don't reply straight away.

Take care ❤ 🙂