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Topic: struggling with special needs children

  1. Matchy69
    Valued Contributor
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    5818 posts
    1 April 2021 in reply to Boudica
    Hi Boudicca and welcome to my thread.I am hoping she takes them today to get tested.She took them last year a couple of times to be tested.I understand why she doesn't want to as its a 1 hour drive and a 2 to 3 hour wait.Its a whole day thing.We do take it turns with appointments usually with the kids as they have a lot.I don't have a car at the moment as I lent it to my ex.My ex just has away of blaming me for everything and making me feel like crap.My daughter finishes school this year and I am really stressing about that.What will she be doing next year.Shes struggling so much with anxiety and everything else she has.
    Take care,
    Mark.
  2. Matchy69
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    5818 posts
    1 April 2021 in reply to Jstar49
    Hi Jstar yes they are self isolating as far as I know.I have been self isolating since Monday.I been self isolating most of my life before it became a trendy term.
    I am just in a real depressed state at the moment the latest covid cases here have put me back again.Theirs one case in the hospital I went to last Friday.This is just effecting people's mental health so much.
    Take care,
    Mark.
  3. Matchy69
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    1 April 2021
    Hi all just to let you know my ex took the kids to be tested today so hopefully get a negative result tomorrow and we can go back to living our lives.I think the kids are use to being tested now.
  4. Boudica
    Boudica avatar
    195 posts
    4 April 2021 in reply to Matchy69
    Hi Mark, I like your comment "I been self isolating most of my life before it became a trendy term" Ha Ha, this is me too! I admit sometimes I was secretly glad of covid as I was able to avoid any social interactions I did not want. I also recognize that although I have this tendency, it is not always the best for me, and I force myself to stay at least loosely connected to the world outside. You mention your daughter will soon be finished school, I think any impending change is terrifying when you have a special needs child. My son will start high school next year and I am terrified. Primary school has at times been really awful for him, and he has never been able to make any friends. It is a tough world out there for those who do not fit the mould. I hope your daughter finds a direction that brings her happiness and confidence. Take care
  5. Jstar49
    Jstar49 avatar
    824 posts
    4 April 2021 in reply to Matchy69

    Hi Mark,

    Hey man, stay strong. It's got to be hard on you atm esp, after your op and everything. Gotta keep things in perspective, as usual, and just take things one day at a time. We can plan for a future but there is so many variables that it's not guarenteed anyway, so any sense of permanency is an illusion. (Thats one take on it anyway) That being said, if you're a sensitive person it's hard not to be affected by the general fear around this disease. It sure is changing the world we live in! I still celebrate the small wins for nature tho, esp less planes in the air. Maybe we can never go back to the way things were.....

    Boudica said "I hope your daughter finds a direction that brings her happiness and confidence." I liked this comment. Its so true. And it's a great time to be unique and different. It's more celebrated than at any other time I can think of. Finding other ppl to be unique and different with is always fun too lol.

    Love your uniqueness Mark. Dont let the buzzards get you down!

    Cheers

    J*

  6. Matchy69
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    5 April 2021 in reply to Jstar49
    Hi Jstar just been a quiet Easter for me haven't seen the kids yet.They are suppose to see their grandparents today.
    Not long for my daughter to go at school only two terms to go.Hopefully no more disruptions .We all have are uniqueness about us just that some are harder to fit into society.Trying to fit in and belong is the hard part.
    Take care,
    Mark.
    1 person found this helpful
  7. Jstar49
    Jstar49 avatar
    824 posts
    6 April 2021 in reply to Matchy69

    Hi Mark,

    Thats it exactly isn't it.

    I know we are meant to be able to walk our own walk, and be ok with liking ourselves forst and foremost, but we all have an innate need to belong.

    Sometimes we find it in unusual places tho, which seems to work for me. Like the BB forums. Or the other gardening 'groups' I belong to. One of the benefits of our global community!

    Your daughter will find her place.

    Cheers,

    J*

  8. Matchy69
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    6 April 2021 in reply to Jstar49
    Hi Jstar I am just getting a bit worried about my finishing school this year and all her safety nets taken away and she will be 18 early next year.I just want her to have some sort of life.Its going to be hard for her to find her way in this world.I will have a talk with her when I get her tomorrow for the week.Just because she turns 18 doesn't mean I end my responsibility for her even though the government may think I do.
    Take care,
    Mark.
    1 person found this helpful
  9. Boudica
    Boudica avatar
    195 posts
    6 April 2021 in reply to Matchy69

    Hi Mark, hope you are having a nice day.

    Sorry if you find this weird and creepy, but I have read through this thread, and I have been thinking about your daughter. I have a son with autism (not to mention traces of it all through my family!) so I understand being a parent of a child who sees the world differently. You mention your daughter has selective mutism, does she speak only within the family or is there anyone else she speaks to? Has she been able to make friends?

    Growing up I was a really, really quiet child, and hardly spoke at all at school, except to one close school friend . But then after some major change in my life and moving schools when I was fifteen, I found I was not really able to talk at all to those outside my family. I remember it as a strange kind of paralysis. It is really uncomfortable when people approach you, or ask you questions and you can't respond. It was like a tight feeling inside and then was just no words. I couldn't really turn thoughts into verbal words. Yet I could write everything down and my thoughts would flow. I guess it was a kind of anxiety response to my situation at the time.

    I am not like that now, but it did not go away over night. I had to gradually push to defeat it on step at a time. I started with things like ordering a pasty from the bakery. I would rehearse over and over the words that I would say, then walk up with them on constant repeat in my brain and say it before the words fell out of my head. It threw me if anyone tried to go off script though!!! These days I can talk to anyone without rehearsal. Your daughter may be up for tackling small challenges that take her out of her comfort zone, as that is how you grow. She's got a great dad to support her too ;)

    2 people found this helpful
  10. Jstar49
    Jstar49 avatar
    824 posts
    6 April 2021 in reply to Boudica

    Hi,

    Boudica that was really helpful to read, as I have no experience with selective mutism. It really helped me to understand a little bit what it must be like for Marks d, and also....How encouraging that you were able to overcome it!

    I used that technique to get my youngest to talk more in situations when she usually wouldn't. Basically starting small, practicing with her, rehearsing with barbie dolls, walking thru different situations. She was shy and getting excluded at school from kindy on. She's so strong now, a few years later. She has a good group of friends which helps.

    The corner shop was a wonderful place to practice things like asking for something, and counting out change. We have to be a bit more creative these days, esp with covid.

    Mark my fried was going thru similar feelings last year. Her d has downs sysndrome, and she was very anxious about her supports disappearing, esp as she has to work and couldn't be there to drive her around. They're both going good now. G has a lot of support in place, learning life skills, and some work experience in place. My friend has gotten used to leaving her at home. She's learning stuff. One day she'll be catching buses on her own, and maybe even having a boyfriend. Just like anyone else. Only different.

    I look back now about how I felt when my eldest was approaching school leaving age. I honestly didn't know how she would go. (As it turned out it was taken out of my hands, which was incredibly painful to not be involved in her life at that stage)

    We all worry about this stage I think. It's the nature of it. Your d's special considerations might give you more concern, but the rules are the same. The baby chicks have to take their first flight, leave the nest. We can help them, if they let us, but we can't do it for them.

    The worst thing is to worry. If you can turn your worries into productive action, like picking up the phone and finding out options for school leavers, or researching things she might be interested with. Maybe talking to the school counsellor or someone that has made a connection with your d? You won't get all the answers, but it may help to alleviate some of your concerns.

    Cheers,

    J*

  11. Matchy69
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    5818 posts
    6 April 2021 in reply to Boudica
    Hi Boudica and Jstar,my daughter only speaks with immediate family and speaks to no one at school.She has a group of friends she hangs around with but didn't talk to.
    I will start looking into options for my daughter for next year.We still don't know what's causing her stomach pain wether it is just anxiety though I feel like it is medical.
    I don't think we had much help or advice with her selective mutism.The pychiatrist never seemed to worry about it and now we are coming to the end of her schooling days and wishing we maby did more for it.The teachers all got use to it.She recorded her English orals on a laptop.Shes managed to get through 13 years of schooling without talking at all at school.
    Take care,
    Mark.
  12. Boudica
    Boudica avatar
    195 posts
    6 April 2021 in reply to Matchy69

    Hello, I kind of like that your daughter was accepted as she was, rather than have people trying to fix her, it's quite comforting. I think change can only come from within, rather than being imposed from outside. I was really frustrated at how trapped it made me feel, that's why I decided to work on it. There was a really hard line between my inner world where I existed, and the outer world and it felt at times impenetrable I wonder how your daughter feels about it? As she moves toward greater independence it is likely to impact her more though. I think as a parent the only thing you really care about is her happiness, but only she can know

    1 person found this helpful
  13. Matchy69
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    5818 posts
    6 April 2021 in reply to Boudica
    Hi Boudica it is really hard to know how she feels about it.I have tried talking to her about it and she clams up and goes silent.It surprising how people do get through life with disabilities like that.They seem to find away so they don't have to speak.At least she does talk to immediate family.
    Take care,
    Mark.
    1 person found this helpful
  14. Missing user
    Missing user avatar
    7 April 2021 in reply to Matchy69
    Hi Mark, I see you're a valued contributor, congrats. I was hoping you'd become one. Great job.
  15. Matchy69
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    8 April 2021 in reply to Missing user
    Thanks Tayla and thankyou for being so kind and supportive on here to.The first trophy I got since my World's Greatest Dad Trophy that my kids gave me. .
    2 people found this helpful
  16. Jstar49
    Jstar49 avatar
    824 posts
    8 April 2021

    Hi Mark, wave to Tayla,

    hey that’s awesome Mark!
    well done for noticing Tayla!

    that reminds me of a funny story. Once when I was helping to organise a Father’s Day stall, we ordered some trophies among other things for the kids to buy. They were so popular that they sold out on pre orders and lots of kids missed out. Devastated!
    my child was so determined that dad would get a trophy she made one herself, from toilet rolls. Her dad had to try and look suitably impressed, which he struggled to do lol!

    Kids choose the funniest things! Shows what they think of you Mark :)

    cheers,

    J*

  17. Matchy69
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    5818 posts
    9 April 2021 in reply to Jstar49
    Hi Jstar the things the kids buy from those stalls is always interesting .A home made trophy sounds amazing as it is made with love.They will be doing the mother's Day stall when the kids go back after holidays.Allmost mother's Day again.
    1 person found this helpful
  18. Boudica
    Boudica avatar
    195 posts
    9 April 2021 in reply to Matchy69

    Hey Good Morning Mark,

    Congratulations on your award, I know it is well deserved. You were the first to reply to me when I reached out to the forum, and it really helped to to feel less alone in my struggle with the past. Never underestimate the difference you make in people's lives by being here. Have a nice day :)

    1 person found this helpful
  19. Matchy69
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    9 April 2021 in reply to Boudica
    Hi Boudica thankyou for your kind words.And thankyou for your support on here.Your advice is always appreciated.
    Take care,
    Mark.
  20. Boudica
    Boudica avatar
    195 posts
    15 April 2021 in reply to Matchy69

    Good Morning Mark,

    Sorry for the slow reply, I have been away helping to cook for students on camp (I have sore hands from stirring big cauldrons of food for 5 days straight!!!).

    I have been on the forums only a very short time, and it is really good to feel that I am not alone, and that there are so many others that share similar experiences of life, and it is comforting to have a place to talk about things that I wouldn't in my regular life.

    However, I also find I get a sort of creeping sadness when I read through a lot of people's stories. Although I can relate to many, I feel their despair and I want to help, but feel powerless to make any difference. I get a bit overwhelmed and despondent that there is so much suffering. I also get angry that there are so many treacherous and abusive people out there that leave behind these destroyed lives in their wake. Sometimes I read posts and I want to respond to people but I really don't know what to say because I just feel sad for their situation and can't offer anything useful.

    I have noticed how widely and consistently you spread your support of others on this forum. How do you keep giving and supporting people without it overwhelming you? How do you look after your own inner peace?

  21. Matchy69
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    15 April 2021 in reply to Boudica

    Hi Boudica that was good you gave them a hand with cooking on the camp.Sounds like it was a bit of hard work with your sore hands.

    Their is a lot of people on here really struggling and a lot of caring people on here giving their advice from their own experiences and just someone to listen and know that they are not alone.It can be just a matter of saying you are listening.Sometimes people post not for advice but to just let it out and just for someone to say they have had similar experiences can help.

    It is hard at times to read people stories and you can feel their pain.its just matter of having compassion knowing that someone needs the same support I have been getting.We are all supporting each other on here.It is great to have a site where we can talk about are mental health.

    Take care,

    Mark.

    3 people found this helpful
  22. Jstar49
    Jstar49 avatar
    824 posts
    15 April 2021

    Hi Mark, wave to Boudica,

    Thats so true what you said Mark, it is good just to have this space to talk about how we are feeling whether that be good or not so good, struggling or having a win. I may not have the same types of struggles as someone else, but I guess empathy is about finding that place where we can relate. To the pain, to the event, to the effect on someones life. I know when I feel heard, it strengthens something inside me, makes me feel not so alone.

    Boudica some days I can become a bit overwhelmed with ppl's stories, and the effect it has had/is having on their life. And some times I will read a post and have nothing I can say, either because I don't have a good perspective on it and can't really relate or empathise, or because it just feels too hopeless and its bringing me down. But then I remember that even the smallest bit of encouragement can bring light to my day. It might just be, hi, That really sux, I'm sorry that happened to you. ....Like many ppl wrote to me when I shared about my daughter who is engaged and not going to invite me to her wedding. So many ppl shared a similar story! Devastating, but each person had learnt something and shared that with me. It really lifted my spirits (after I finished crying lol).

    Sometimes ppl's stories stay with me and I find myself mulling it over in the garden, or during a cuppa tea, and the world feels less lonely....does that make sense?

    I do like sad stories tho....

    Cheers,

    J*

    1 person found this helpful
  23. Boudica
    Boudica avatar
    195 posts
    16 April 2021 in reply to Jstar49

    Hello Mark and J,

    Hope you both had a nice day today :)

    Thanks for your perspective. You are right, it is comforting just to feel heard and know that you are not alone, even if the person listening cannot really help to change the situation. I will try to remember that when I read others posts. I am not very good at supporting people with emotional stuff though, as although I want to help, I am aware of my inability to say the right things, so I am worried I will make people feel worse by opening my mouth. You both are very good at responding in a positive caring way, it is just your natural way.

    I am also learning that I need to regulate where I go on the forums if I am in a delicate mood, as some muck in my past is best left alone at these times, or I just get stuck in a loop of sadness.

    Jstar, yes it makes sense, and I too use cups of tea and gardening to help me process the worlds problems :)

    1 person found this helpful
  24. Jstar49
    Jstar49 avatar
    824 posts
    17 April 2021 in reply to Boudica

    Hey Boudicca, wave to Mark (lol),

    I keep reading quotes that say we don't want to be fixed, but just want company on the journey.

    You being here, and bravely providing that company, is all that anyone can ask of you, including yourself. I rewrite my posts all the time! And struggle with knowing if I've said the wrong thing! And then, if it's getting to me (and this might sound harsh but it saves my own MH) I can say to myself, it's ok, ppl on the BBforums don't really know me, and if they don't like what i say then they can say so, or ignore me, or I can stop posting and its' ok.

    I see ppl apologising all the time (probably becos we are all a pretty sensitive bunch) even when no offence was taken. And usually everyone seems very quick to accept the spirit behind an apology. I almost feel like I'm practicing for real life... Let me explain. When I had some bad stuff go down in my family a while back, I started to feel like I couldn't say the right thing ever, and blamed myself for the way my words were misinterpreted etc. So being here, communicating here, has been good for me. Its given me confidence to take risks again, and express my thoughts, practice being a friend. I've gotten so much lovely positive feedback, and so much confirmation just from ppl being similar in some way to me, that I feel stronger now. I know I wouldn't be back in the working world without this place right here!

    Thaks Mark for letting me say all that on your thread!

    How your hols winding up? I think I read that you've got some time with your son?

    Cheers,

    J*

    1 person found this helpful
  25. Sleepy21
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    17 April 2021 in reply to Jstar49

    love that, Jstar, great noticing and describing the way the forums help us speak out and speak up and "come as we are"

    i can relate to that a lot. Ppl do apologise a lot here, me included... i don't want others to feel excluded ever here so that worries me the most. that i'll make someone feel like i don't care.

    Welcome to all, the more the merrier etc...

    Hey Mark just wandering how your weekend is going and how ur kids are going

    1 person found this helpful
  26. Matchy69
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    5818 posts
    18 April 2021 in reply to Sleepy21

    Hi Sleepy,Boudica and Jstar and everyone who is reading,My weekends going ok.I had some nice time with my son ,only ended up having by son over.He liked the present I bought him.We had a rainy day here yesterday and woken up today with a beautiful sunny day with plenty of birds singing welcoming to this new day.The kids will be off to see their grandparents today for a late Easter.

    Take care,

    Mark.

    1 person found this helpful
  27. Sleepy21
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    18 April 2021 in reply to Jstar49

    J thanks for ur beautiful post.
    I relate a lot to what u wrote, I was initially unsure how to post here and felt that I'd offend ppl if I gave them advice. It is amazing to see how ppl here react with an open heart and it has made me feel more open myself. It's a special place. Hope u are well

    Hi Mark,

    What present did you get for u son? How's ur daughter going at the moment? Hope u had a break while they were with their grandparents and got to rest. I was meant to clean my apartment and did only a little bit today... (very little!!) My relative came over and there was heaps of junk around. I hope they didn't mind. I have a sparkly picture on the wall I got from Kmart and everyone seems to like it and look at that, so hopefully that was her focus and not the mess of my home.

    1 person found this helpful
  28. Matchy69
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    19 April 2021 in reply to Sleepy21

    Hi Sleepy I decided to go for a ride and have a look at the weir and see if it had any water in it after all the rain we had.I bought my son some traffic signs he loves that kind of thing.He was sick on the way home back from his grandparents.I think he ate to much.Hopefully he's better today.

    Take care,

    Mark.

  29. Boudica
    Boudica avatar
    195 posts
    19 April 2021 in reply to Matchy69

    Hello Mark,

    It is so satisfying when the creeks and rivers fill after a long dry isn't it? Water is life giving after all. I live in SA and the rainfall this year has been okay, but we have had some terrible bleak droughts in the past. I secretly dream of moving somewhere with higher rainfall so I can grow all the plants I want to (average annual rainfall only 450mm where I am). Hope you are having a happy day.

    Boudica

    2 people found this helpful
  30. Matchy69
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    20 April 2021 in reply to Boudica

    Hi Boudica we have such long dry spells here and it is good to see creek running and farm dams full.Tough it seemed to be more towards the West and when I go east the creeks are dry.I wanted to live on an island and even looked up houses and I could have afforded it but moved out west to be close to my kids.Its peaceful and quiet here with views of farms and mountain ranges.

    Take care,

    Mark.

    1 person found this helpful

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