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Topic: struggling with special needs children

  1. Boudica
    Boudica avatar
    195 posts
    13 June 2021 in reply to Matchy69

    Hi Mark,

    It is unlike you to be away from here for so long, I really hope you are okay.

    Thinking of you.

  2. Matchy69
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    16 June 2021 in reply to Boudica

    Hi Boudica I am sorry I haven't been on for awhile.I have been sick with Pneumonia and in hospital for it.Slowly getting better.I hope you are coping ok.

    Take care,

    Mark.

  3. Paw Prints
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    16 June 2021 in reply to Matchy69

    Hello Mark

    Good to hear you're on the mend... take things slowly

    Paws

  4. Boudica
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    195 posts
    16 June 2021 in reply to Matchy69

    Hello Mark,

    How awful for you, I'm sorry you have been so ill. I hope you feel better soon.

    Don't feel pressured to write, I was just worried.

  5. Matchy69
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    20 June 2021 in reply to Boudica

    Hi Boudica I am feeling better but still have it lingering on a bit so I am still not completely healed.My son didn't go to sleep to 4am this morning so I am feeling really tired and run down today.I hope your weekend is ok.

    Take care,

    Mark.

  6. Boudica
    Boudica avatar
    195 posts
    22 June 2021 in reply to Matchy69

    Hi Mark,

    I am so glad you are winning the battle against your illness. I think sometimes you don't really comprehend how sick you really were until you start to feel a little bit normal again. Sleepless kids are just agony. My son sleeps amazingly well at the moment (hurray), but was on meds that made him active at night for a while (imagine child getting up at 2am, running around and hammering on the side of the garage like a drum, and throwing random objects in to the air to watch them smash on the ground!!!). I hope you have a better night tonight, I know how tough it can be.

    I am kind of glum at the moment. The future just looks hard at the moment. My son was sent home at 10:30am for tearing up his maths book. My mother got a call from her neurologist with some bad news and my ex is due to have major surgery in a few days (most organs to be removed from pelvis due to location of cancer), he will have to learn to walk again due to the extent of the surgery. I have been really worrying about the surgery, as it is pretty brutal.

    I know it seems selfish of me, but at the moment I am also frustrated that I can't do or have anything, as it seems my life will be completely swallowed up by looking after other people. I have had to put any plans for myself on hold (including study), until some of the health issues improve, as I am always on call for others. I will now have 100% care of my son and my mother will need a lot more help going forward.

    Part of what troubles me is not earning money for the future, as I worry about providing for my son financially when I am gone, as I do not really imagine him working. I have savings but not enough, they could be gone in a blink. My ex is terrible with money, when he inherited money he spent it on designer clothes and watches. He is now living with his Mum, who is paying for everything for him. He did not contribute anything towards the house that I have, and has never contributed financially to Blake's expenses, it has always been my work that paid for everything. Now I am not working how do I build any wealth for the children?

    Sorry about the rant, it has just been one of those days, gloomy weather too.

  7. Matchy69
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    23 June 2021 in reply to Boudica

    Hi Boudica I am sorry youare struggling at the moment to and understand how you are feeling about your future.I just see no change in anything for me.I just see the same thing for my future.

    I managed to go to my son's sports day yesterday.I had a good chat with the principle about my son.They were going today to look at other options for my son for his communication.His writing is really bad and ilegdible and stuttering has got worst.Trying find something they can use that he can continue using during high school and they been in contact with the high school about it.

    These sleepless nights he has didn't happen that much these days.One period one of the medications he was on was keeping him awake all night.

    I have booked my daughter in for a driving lesson Monday with a teacher who specialises in students with special needs and disabilities.Hopefully that goes well.Next year is stressing me out what my daughter will be doing.I think it's to hard for her to get a DSP these days.

    Your always welcome to vent on here Boudica.I know how hard things can get.

    Take care,

    Mark.

  8. Boudica
    Boudica avatar
    195 posts
    24 June 2021 in reply to Matchy69

    Hey Good Morning,

    I am feeling better today. Although nothing has changed, I think it just takes me a bit of time to process each time there is a new setback. It just seems neverending as I have had close family members with serious illness constantly for 10 years, and it grinds you down.

    Some new succulents I ordered in the mail arrived, so that brightened my morning (I am going to plant them in a hot dry spot near the letterbox, not sure if the postie will like them when they get bigger as they are spiky).

    Your son's school principal sounds really proactive, that is a great thing. My son uses a laptop at school and types everything up instead. He hates writing.

    I remember learning to drive. At first my Dad took me for a couple of lessons, and it was awful! His philosophy was just leave you to it and you'll work it out - he didn't even explain the clutch at first. After that I got an instructor who was fantastic, it really makes all the difference. If they specialise in students with special needs, I think it should go well, as long as her expectations are managed ie. it takes a lot of practice to learn to drive, so it is only natural to be anxious and unskilled at first. I used to eat a really sugary bar before each lesson, as I found the anxiety of driving would cause my energy to really crash otherwise.

    For your daughter, it will be really important to maintain some kind of social link outside family, such as volunteering once a week with animals, as young people can quickly feel isolated once school vanishes (even if they never liked it). Is she still going to do the animal course? Some people still seem to get DSP without a severe physical disability. My ex has a younger sister who has struggled with Agoraphobia for years, and she was able to get DSP (maybe 8 years ago now though). Otherwise, if your daughter is put on jobseeker, she may be able to get an exemption to some of the jobsearch activities.

    Have a nice day :)

  9. Matchy69
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    24 June 2021 in reply to Boudica

    Hi Boudica i am glad you are having a better day.For over 3 years I was full time carer for my terminally ill mother and that took a lot out of mentally and now trying to look after my 2 kids best I can.

    This principle is the best I have come across over the years and I have seen a few.She takes no nonsense and won't send students home when they are playing up.She seems to have so much respect from all the students and staff as well as the parents.Their is more to being a principle then just having the education for it.Ehen looking for a school for your son see the principle and ask them what their policies are with special needs kids and that.

    When I was 17 I didn't go for my car licence straight away and went and got my motorbike one first and then a couple of years later bought a car and my dad taught me drive.

    I never did end up signing my daughter up for the animal course and wish I had now.She still wants to work with animals but seems to be always sick and has missed so many days from school from it.

    I think my son will have to use a laptop full time as he just can not write.I do not know how the meeting went today when they were looking at options for him.

    Buying new plants cheers me up to then I have to workout where to put them.

    Take care,

    Mark.

  10. Boudica
    Boudica avatar
    195 posts
    3 July 2021 in reply to Matchy69

    Hello Mark,

    Sorry so slow to reply, I have been a bit stressed, sometimes life is just hard. My ex has had surgery and has been in intensive care this last week. I think he is getting a bit better though, hoping he might be stable enough for a regular ward next week. My son does not talk about what is going on with his Dad much, but sometimes says really grim things, and has been really clingy, hopping into my bed in the middle of the night (which he never usually does). I really believe that his Dad will be ok this time, but lets hope the cancer does not come back a third time. My son is only 12 and he needs his Dad. I met his Dad when I was in my early 20s, so we have a lot of history, and although we couldn't make things work, I care for him still. Neither of us have had any other relationship, I know that is really weird these days.

    Mum has now been diagnosed with Non-Hodgkinson Lymphoma (a type of blood cancer) in addition to her existing degenerative disease (cerebral and cerebellar syndrome, peripheral neuropathy etc), but it is moving slow, so she does not want to bother with chemotherapy at the moment, as it will impact the quality of her life too much.

    Your daughter can still do the animal course when it is the right time, if she wants to. There is no rush, maybe she is not ready yet. Has she started the driving lessons yet, or taken her learner permit test? The learner test can be a barrier to some (I knew a girl with dyslexia who took it 3 times). It will give her confidence to make progress with this, as it is a big step toward independence.

    How are you going getting over your illness? Are you still coughing a lot? With covid around, people give you the evil eye if you cough, but then if you try to hold it in, it gets worse (I get asthma).

    My son has a school camp coming up. He would not cope with it all, but usually what I do is get accommodation nearby for us, so he can participate in some of the activities without being there all the time. Hoping he can do the horse-riding and archery. Do your kids participate in school camps? I used to absolutely love them as a kid. I used to camp out in the back paddock with my best friend sometimes too, happy days.

    Thanks always for reading

    All the best

  11. Matchy69
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    3 July 2021 in reply to Boudica

    Hi Boudica I am really sorry that your mother is sick.I am praying for her and your ex and hope the surgery has worked.It would be a huge mental roller coaster for you and your son.I know when my dad was diagnosed with cancer I shut myself in my room and didn't talk to anyone.It was a really hard thing to come to terms with as a teenager.

    My daughter got her Learners last year and I have been teaching her to drive.She had a professional driving lesson last Monday which I was really happy with the instructor.I am trying increase her driving time and try and get her licence at the end of the year.

    I am still coughing and still not feeling 100%.Not sure if I ever will.

    I got my son's report card and it was really good with all c's and his behaviour was good.A total change from previous years.

    I remember going on school camps back in primary school and doing orienteering,archery,caoneing and having a big bond fire.My daughter has been on a couple and was meant to go on last year but it was cancelled.I think next year my son will be able to go on one.

    Take care,

    Mark.

  12. Boudica
    Boudica avatar
    195 posts
    7 July 2021 in reply to Matchy69

    Hello Mark,

    I hope you have had a nice day today. The weather here today was nice and bright and sunny, crisp though. Blake and I rode our bikes along the track by the beach and had lunch at a cafe sitting outside in the sun next to the marina, it was really nice to be outside and stare out at the water and the sailboats.

    Thanks so much for your kind thoughts. My ex is now much better, and is able to walk around a little, so Blake was able to spend some time with him this afternoon. Mum is going to start immunoglobulin therapy, which won't help with the cancer, but may give relieve to some of her neuropathic symptoms that are effecting her walking. The product is made from thousands of different peoples blood, which is slightly creepy to think about! We are so lucky to have medicare, as each treatment costs many thousands.

    That's great your daughter has a good instructor. Kids have to do so many hours of driving now to get their licence. The better trained she is the more comfortable you can be with her safety. Good excuse to go on lots of road trips to random far-away places, which could be fun.

    I hope your cough melts away. I used to get bronchitis bad every autumn / winter for 10 years, and I remember that horrible feeling of suffocation and the chest pain. Surprisingly, when I moved to a different house, I stopped getting sick. I think it might have been the cold damp conditions in the old house triggering it. My son got croup as a 2 month old baby in that house too.

    It sounds like your son is going really well. It must be a great comfort to know he is happy.

    It is only 5 in the afternoon, and I have hoped into bed with my electric blanket! Looking out my window, I see the pink clouds moving across the sky, as the sun is getting low. Things are ok now, but the last couple of weeks have been tough and I just feel really emotionally drained - I won't get away with it for long though, Blake is playing a car racing game just now, but he will tire quickly of it. Nice to be able to steal a little recharge.

  13. Matchy69
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    9 July 2021 in reply to Boudica

    Hi Boudica how are you and your family? Sounds like your ex is doing better and is good Blake has spent some time with him.

    My son had his specialist appointment Monday and their was no change in medications and treatment for him.He got angry the other day and threw his iPad and broke that.I will have a meeting at the school when it goes back to see what they have come up with for his communication that he can take into high school.My son stuttering has really deteriated this year and is really bad.

    The weather here is wet today.Probably good to sit in front of the fire today but I am not sure what's happening today.

    I wish I was near some water to enjoy.I have farms to look at here from fairy's to wheat and grain and sunflowers get planted in spring.

    Take care,

    Mark.

  14. Matchy69
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    5947 posts
    16 July 2021
    Hi all we had a phone call from our NDIS support coordinator and gave us another support option for my daughter connected to the NDIS called SLES which stands for School leaver Employment Services which is to help young people leaving school to get into employment who have disabilities with financial and other supports options for them.We will be looking into getting this for her.
    1 person found this helpful
  15. Sleepy21
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    16 July 2021 in reply to Matchy69
    hi mark that sounds great, from what u write here i feel that ur daughter is very talented and i hope this helps her
  16. Matchy69
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    17 July 2021 in reply to Sleepy21

    Hi sleepy I am so greatful for NDIS contacting us about this as I was trying to work out who to contact about my daughter finishing school this year.Its good to know we can get support for her and not just be left without all the supports she has now in school as this is what really worried me.I remember when I finished school that their was no support for me and adventurally put on a DSP.I my daughter has such great results in school and can have a career for herself.

    Take care,

    Mark.

  17. Sleepy21
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    27 July 2021 in reply to Matchy69

    hi mark and boudica and all reading

    just saying hi as was wandering how you were going. no pressure to reply i just wnted to convey a hello to u

    2 people found this helpful
  18. quirkywords
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    28 July 2021 in reply to Matchy69

    Mark

    Like sleepy just saying hello and hoping you are well.

    1 person found this helpful
  19. Emo
    Emo avatar
    225 posts
    15 August 2021

    Hi Matchy69,

    I've been worried about you as I haven't seen you around the forums for a long time now. You are always so kind to everyone by reaching out to others with great support and comforting words.

    You truly seemed to have a great gift of making people feel better about themselves. I always felt better when I'd receive a reply from you.

    I hope you will return one day if you would like to, no pressure. I hope that you and your kids are coping alright with the lockdown and the pressures of life.

    Please take care of yourself.

    Regards,

    Emo.

    2 people found this helpful
  20. Jstar49
    Jstar49 avatar
    824 posts
    19 August 2021

    Hey Mark,

    Adding my hello's to the list on your thread- I haven't been around much so it was only when I checked on gardening thread and couldn't see you there for awhile. Hope you're ok mate.

    Cheers,

    J*

  21. Matchy69
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    10 September 2021
    Hi all I am dealing with a lot in my life at the moment.The most recent thing is my daughter who is pregnant made an attempt after going into deep depression after she split with her husband.Their is a lot to that story.I have been trying to help her the best I can.I tried getting her to see her doctor and get a referral or even ring the Lifeline number or beyondblue.It is really hard seeing my 26 y.o struggling so much and I just feel so helpless.I just tell her everyday I love her and am here for her and will listen and never judge her.
    4 people found this helpful
  22. Sleepy21
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    10 September 2021 in reply to Matchy69

    Hi Mark

    so sorry to hear that

    i believe your words will make a world of difference to her

    26 is a hard age, i also had a SA at this time and went to the ED
    i think its great that u give her space to talk.... and know that she is safe and loved

    i was screamed at and told i was stupid for my attempt, and disgusting. giving her strength to know she is safe and okay sounds lik it could be healing and helpful for her. hope ur okay.

    2 people found this helpful
  23. Matchy69
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    10 September 2021 in reply to Sleepy21

    Hi sleepy thankyou for your kind words.I know how the hospital can treat you.I have been abused by my nurse for crying in hospital in the mental care ward.Some staff are in the wrong profession.

    I try to be there for them all and never judge them.My daughter just had a nasty text from her grandfather calling her stupid.She needs love and support not abuse.

    My youngest daughter went to the doctor's today as she is still suffering from stomach pains.She is going to get both scopes done to see if they can find anything.It really is debilitating for her.She has her school formal next thursday which she is excited about.

    I was at the local show grounds today watching my son do his ball games which all the schools from the district attend.

    Take care,

    Mark.

    4 people found this helpful
  24. Aaronsis
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    10 September 2021 in reply to Matchy69

    Hi Mark

    It is so wonderful to see you here and I have been thinking so much of you.

    I am so sorry to read that things have been so tough for you lately, you sure have had a stack of things on your plate.

    I hope that your daughter is finding things easier with her pregnancy and that she has reached out for some support, that would be so very frightening for you and also for her too.

    I was also really saddened to read that she got a nasty text from her grandfather, that is just not necessary to be speaking to people like that and I am so sorry she received that, how awful.

    How wonderful for A that she is able to go to her school formal and that she is excited about that. I hope that her pains in the stomach can be resolved soon and free her up from that worry. I hope you all have a wonderful night at her formal.

    It is so wonderful to hear from you Mark and I hope today is a great day for you.

    Hugs as always

    Sarah xx

    2 people found this helpful
  25. Matchy69
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    10 September 2021 in reply to Aaronsis

    Hi Sarah thanks for your kind words.Wasnt sure if I should come back on here or not.A break is definately needed sometimes from here.

    My daughter has been suffering from these stomach pains for a few years now.We have been back and forth to the doctor's with this but no real answers.It is a real worry for us.Looks like the school formal will go ahead here but you can never be totally certain with the way covid is.

    I have been trying to keep busy and started working on my new motorbike project and not to far from putting my shed up.

    Take care,

    Mark.

    1 person found this helpful
  26. Matchy69
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    10 September 2021 in reply to Aaronsis
    Sarah did your cat ever come home?My daughter's catfish disappeared out of the fishtank.I think one of the other fish might have eaten it.
  27. quirkywords
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    10 September 2021 in reply to Matchy69

    Mark

    I am sorry you are coping with so much. When our children hurt we hurt too.

    I Echo Sarah's words and feelings.

    I know many many people here follow your story and have been wondering how you were going.

    I can relate to crying in hospital, when my mum had dmenetia and no one was helping her, I broke down and a nurse told me I was upsetting everyone on the ward which made me feel worse. Luckily a studnet hurse got me a social worker who didnt really help but she did listen.

    I hope you find someone to listen and help.

  28. Matchy69
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    11 September 2021 in reply to quirkywords

    Thanks quirky for your kind words.I didn't really know if people read my post or not.Sometimes writing down something helps even if no one responds to it.

    I have been going in and out of hospital since a young age for various medical problems and their is some amazing hospital workers out there but always seem to be odd one with no compassion.I wonder what made these people like that.

    I spoke to my pregnet daughter last night she said she was feeling better and seemed more happier then she had been.I know it will get tough again for her and the pregnancy is making her really tired especially with her still working in disability care.

    I am not sure when my youngest will get her colonoscopy and endo done.It might be a bit of a wait.I know I had to wait ages to get mine done.

    My son was very excited about the ball games and talked non stop about them when he got home.

    Tske care,

    Mark.

    3 people found this helpful
  29. ecomama
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    11 September 2021 in reply to Matchy69

    Dearest Matchy

    WE'VE MISSED YOU SO MUCH!!!!

    Thankyou for coming back, the forums are not the same without you :-(

    You've made my whole week coming back in, even for one post! Maybe my whole year lol.. hugs.

    So you'll be a grandad (again?). Pregnancy can be rough on some, it's not fair really. I hope she feels better soon.

    I hope your other daughter gets in soon for her endo and colonoscopy. Even moreso I hope she has good results and a workable prognosis.

    Love always
    EMxxxx

  30. Matchy69
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    11 September 2021 in reply to ecomama

    Hi Em I am glad I made your day😀.I thought I could sneak back on here quietly.

    Yes one of the twins is pregnant and really is struggling with her mental health and now does not want the baby.A lot has happen in her life in the last six months a lot of it bad.I am trying be there for her and give her the love and support she needs.

    I would like some answers for my daughter stomach pains.If really worries me that they haven't come up with any real answers so hoping the next lot of test will show something just to give us some answers.

    Take care,

    Mark.

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