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Topic: struggling with special needs children

  1. Matchy69
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    21 April 2021
    Just an update on my son.He has been very sick this week with vomiting.He should be going to the doctor's today.My daughter is ok at the moment.
  2. Boudica
    Boudica avatar
    195 posts
    21 April 2021 in reply to Matchy69

    Hello Mark,

    Sorry to hear your son is sick. I often think my son feels illness more due to his sensory problems that have come along with his Autism. He gets really distressed and it can mean day and night efforts to keep him calm. How does your son manage? I hope you are getting enough rest too, it can be hard.

  3. Boudica
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    195 posts
    21 April 2021 in reply to Matchy69
    Aah an island wouldn't that be perfect! Where you live sounds pretty though, and I understand your decision, I also moved close to my ex so it was easy for my son to see his Dad. Unfortunately this place has never quite felt like home to me though, cos I am a country girl at heart.
  4. Matchy69
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    21 April 2021 in reply to Boudica

    Hi Boudica my son stays in bed most of the time when he is sick and I think he gets a bit worried when he is sick and now that any little illness is made to be a bad thing.My son was really sick when he was about 5 and had to go into hospital to he recovered .It was a really scarey experience for both of us so that can worry him to that he might have to go into hospital.

    I feel sometimes I am to close to my ex.She can be a lot of hard work at times.Even though she's 2 towns away she is still to close.But I need to be close to the kids.

    Take care,

    Mark.

  5. Boudica
    Boudica avatar
    195 posts
    22 April 2021 in reply to Matchy69

    Hello Mark, hope you are having a nice day :)

    It must have been really stressful to have a child in hospital, thankfully I have never had to experience that.

    I think coronavirus has made us all a bit hysterical, as soon as someone gets the sniffles they become an outcast in society. This has taken it's toll on my son too as I think over the last year he has picked up on our anxiety at signs of illness (My son's Dad and Grandma are both immunosuppressed due to chemotherapy so we have to be cautious).

    Yes, I can understand that, I live only 5 minutes from my ex and it is way too close for my comfort. My ex used to complain about the driving when we lived 45 minutes away (he doesn't even like to leave home though, so there is no pleasing him, I have always had to do the running around!!). It is the worst when you live so close that you can bump into each other when down the shops - uurgh! I know how important it is to have both parents in your life though, as my parents split when I was 3, and my Dad went to work in the gas fields, and I missed my Dad in my life.

    Hope you have a bit of sunshine today:)

  6. Matchy69
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    22 April 2021 in reply to Boudica
    Hi Boudica I have some update on my son being sick.I was fast asleep last night just before 8pm the doctor contacted us with some test results.He has to have the next couple of weeks of school and see how he goes on some medication.He will need to be on some medication for the rest of his life.Its been a bit of a shock for us.
  7. Paw Prints
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    22 April 2021 in reply to Matchy69

    Hello Mark,

    That is not the result we were all hoping for you... of course it is something of a shock... I hope the meds work well without needing much tweeking... do look after yourself

    Hugs

    Paws

  8. Sleepy21
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    4153 posts
    22 April 2021 in reply to Matchy69
    Hi Mark
    Thinking of you all
  9. Matchy69
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    22 April 2021 in reply to Sleepy21

    Thanks paws and sleepy for your kind thoughts.It is a real big worry for us at the moment.I am hoping it doesn't come to the worst scenario which is some major surgery for my son.

    Take care,

    Mark.

  10. Boudica
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    195 posts
    22 April 2021 in reply to Matchy69

    Hello Mark,

    So sorry to hear the news about your son, I hope they are able to stabilize him quickly. Fingers crossed per surgery, I know you must be beside yourself with worry. My thoughts are with you.

  11. Matchy69
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    23 April 2021 in reply to Boudica

    Thanks Boudica it seems that the medication is doing what it is suppose to do.I will see how he goes over the weekend.

    Take care,

    Mark.

  12. Boudica
    Boudica avatar
    195 posts
    23 April 2021 in reply to Matchy69

    Hello Mark,

    How are you feeling today, hope you are okay. I am trying to get me son out for a bike ride (it's hard to get him out the house at all sometimes).

    j

  13. Matchy69
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    23 April 2021 in reply to Boudica

    Hi Boudica my son's doing ok and full of energy and really has picked up.I just have to keep a close eye on him over the weekend.My daughter got an A for her maths assignment which is great she usually gets As.I think I will be worn out this weekend.I don't even know if I will get a chance to watch the footy on ANZAC Day.

    Take care,

    Mark.

  14. Boudica
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    195 posts
    23 April 2021 in reply to Matchy69

    Hi Mark,

    Good to hear your son is doing okay, I'm happy for you. Sounds like your daughter is a smart cookie :) Take care of yourself, you've had a rough week.

    Sorry don't care about football (It seems I am alone in the world on this though).

  15. Matchy69
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    24 April 2021 in reply to Boudica

    Hi Boudica my son managed to sleep through the night which was good as I thought I would have to get up a few times for him.I have been up myself since 3 am.I would have loved a bit more sleep but couldnt get back to sleep and my son will be up soon.

    Take care,

    Mark.

  16. Boudica
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    195 posts
    24 April 2021 in reply to Matchy69

    Good Morning Mark,

    It's great your son could sleep through, he really needs his sleep now, sleep is healing.

    3am is early to get up. I often have that problem, where I wake and can't get back to sleep. I have too many worries crowding in and can't shut my brain down, does this happen to you? It is hard to relax when you are on alert listening for restless children too. I recently got a fitbit which graphs my sleep, hence I have realised how poorly I sleep, so I have been trying to improve, as lack of sleep really impacts energy levels and mood. I find I am fine with a night or two of sleep deprivation, but when I have short sleep for a week or so, I think I go a bit loopy and my thought get dark.

    Today my son is spending the day at his dads, so I must get stuck in to study......I don't feel very motivated as it would be beautiful weather for a hike and I feel restless, but I feel like I am behind with my work :(

    I hope you cope ok today despite your sleep deprivation. Be kind to yourself

  17. Matchy69
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    25 April 2021 in reply to Boudica

    Hi Boudica today my son has just finished is last dose of his medication at a high dose twice a day and will now have one low dose at night.So I will see if their is any change with that.Very exhausted today just feel totally worn out.I did manage to listen to the town ANZAC service from my place this morning.

    I hope you manage to get some study in today though it was a beautiful day here after a foggy morning.

    Take care,

    Mark.

    3 people found this helpful
  18. Boudica
    Boudica avatar
    195 posts
    26 April 2021 in reply to Matchy69

    Hello Mark,

    How are you feeling today? Hope things are going well for you and your son and the change in meds goes to plan.

    I haven't been to an Anzac dawn service since I was a kid, all the old folks in my family have gone now. I had family that had been through the wars but did not like to talk of it and I think it's only later in life you realise just how large those experiences must have loomed in their life. I have never really been particularly into war history, but I visited Gallipoli years ago when I was in Turkey, and it was a really sombre emotional place.

    I've really been finding it hard to study at the moment, I sit but can't concentrate. I have finished my degree now, but doing honours, beginning to wonder if I have made a mistake committing to it, as it is quite hard to juggle with a special needs child too.

    Have a nice day, I hope it is peaceful.

  19. Matchy69
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    26 April 2021 in reply to Boudica

    Hi Boudica I can understand how hard would be to study especially with a special needs child.I don't think I could do it and admire you for doing it.Good luck with your Honours and hope you get there.

    That would have been an experience visiting Gallipolie.My grandfather visited there in 1915.Certainly caused him a lot of mental health problems and was one who would never March or talk about the war.

    I am just physically and mentally warned out today and feeling very depressed today.I hope he can be back at school next week.See how he goes this week.

    Take care,

    Mark.

  20. Boudica
    Boudica avatar
    195 posts
    26 April 2021 in reply to Matchy69
    Mark, I am sorry to hear you are feeling down. It is not surprising that going through a crisis with your son's health has left you feeling depleted. You are probably super focused on your son right now, but try to take some time to relax and clear your mind, I know it's hard, but you've got to take care of yourself too. Try to smile! I read today that smiling releases endorphins that make you feel better even when it is a fake smile!
  21. Boudica
    Boudica avatar
    195 posts
    26 April 2021 in reply to Matchy69
    When I am feeling down, sometimes I just wallow in it and lay in bed with my electric blanket cranked to high and a pillow over my face - not sure that I should recommend that though, it's something I feel guilty about, but sometimes I find it is good to just block out all stimulus and exist for a bit when I am overwhelmed by life. Other times I walk down to the lake nearby and just sit there. There are always other people down there, and although I don't talk to them, it gives me a sense of not being so alone with my problems. Is there something you can do that gives you comfort?
  22. Matchy69
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    26 April 2021 in reply to Boudica

    Hi Boudica it has been such long stressful day for me.It is really hard to find time for myself when I have the kids.I really don't have anything that comfort myself with when I have the kids.when I don't have the kids I can go for a motorbike ride to distress .That would be nice to have a lake to visit .Water is always tranquil to be near.I have lived on a creek and a river in the past and went for walks regularly along them exploring.It was lovely and I miss being so close to water like that.

    Take care,

    Mark.

  23. Sleepy21
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    4153 posts
    26 April 2021 in reply to Matchy69
    hey Mark. Hey Boudaica - great to see you here.
    Just saying hi
  24. Matchy69
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    27 April 2021 in reply to Sleepy21
    Hi sleepy and to anyone else reading.
  25. Boudica
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    195 posts
    27 April 2021 in reply to Sleepy21

    Good Morning Mark & Sleepy,

    I see you have both been on the night owls thread, I am sorry you are not sleeping so well. I often have that trouble too, and end up doing housework like washing in the middle of the night. What really destroys my sleep is when my son is having troubles, so I feel for you at the moment mark. Sleeping in the day is not possible for me, so if I fail I have to live in a trance until the next night. I hope you both sleep better tonight, it is really exhausting.

    Mark, yes it can be completely impossible to get any time to yourself. My son has lots of busy things that he does, but he always wants me next to him involved in some way. He talks constantly all day, so that it can just be hard to have my own thoughts. His key interest in life is electronics, circuits, disassembling any sort of appliances, fixing old computers etc. I try to take an interest, but there are limits to my interest and he can talk about a battery or a graphics card for an hour at a time, so it can be a mighty relief when he decides to watch a youtube video and stops talking for a bit!

    Blake has little ability to self regulate, so I must help him to regulate. Although he talks continuously he cannot communicate distress or frustration verbally, so I am always watching for small signs of frustration like jiggling or squirming and tapping. If he gets hot or physically uncomfortable he gets angry (he also has synaesthesia) Sometimes he just explodes without much warning. The results of his explosions can be serious, for example he flipped when his laptop went flat when he was using it the other day and deliberately lit a fire in the house by puncturing a lithium battery. I am used to this kind of thing, and I keep fire blankets and extinguishers close by.

    Looking after special needs kids is exhausting in a way that others just don't understand though. I do think he is gradually getting less demanding though (he is 12 now, but functional age approx 6 according to psych). The thing that would make the biggest difference to me though, would be if he was stable at school, as he is sent home constantly and the last three years he has been excluded from school for 3 month periods at a time each year.

    Mark, Riding a motorbike must be a real release. My Dad was into bikes and when we were very small he had an old BSA with a sidecar that we would ride in, it was great.

  26. Boudica
    Boudica avatar
    195 posts
    27 April 2021 in reply to Matchy69

    Good Morning Mark and Sleepy!

    I did write a post here, but yet to appear, will rewrite if it doesn't show up. Have a nice day :)

  27. Matchy69
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    27 April 2021 in reply to Boudica

    Hi Boudica it is a real struggle with a special needs child and understand how hard it can be.The school sending them home makes it really hard on you.My son's school was doing this and wrote a letter to our education minister and the school got a new principle who's policy is to keep them at school of possible and she has been doing this most of the time.Before it was a nightmare having to pick him up when he was having a bad day and I when I am call just watch tv and wait for the phone to ring and come and get him.

    It is hard when they have a melt down mind has wrecked TVs and DVD players I don't know how many I have replaced.It does break your heart when they do this.It is matter of trying be prepared for when this happens.

    That's cool your dad had a BSA with a sidecar.My dad had a BSA as his first motorbike.

    Take care,

    Mark.

  28. Sleepy21
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    27 April 2021 in reply to Matchy69

    hey Mark

    well done that's amazing which i have said before that u went above the principal!
    I don't agree with sending kids home at all

    i'm sure ur son appreciates that u understand him and are there for him

    he has u on his side. amazing how much difference good educators/management at schools make.

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

    Hi Mark,

    Thanks for your suggestion, the principal does have a strong impact on the handling of disability. There have been 4 different principals in the time Blake has been going there, so we have a new one who seems nice, but you really tell until they are tested. Class teachers have a huge impact on the child and so does the special assistance teachers and the children in the class, so each year there are so many variable factors.

    The Education Department has been involved in several ways over the years: I have contacted the disability section and the area coordinators . It is hard work advocating for your child constantly, but it seems without this they would be completely written off. I am so glad you feel you were successful in helping your son.

    In SA I know Blake's school experience is common amongst children on the spectrum. It seems the system serves the mildly disabled kids ok, but it cannot cope at all with those that need a higher level of support, but no intellectual disability, so they do not qualify for a special school. I have spoken to many parents who give up and homeschool, but I do not plan to give up work permanently.

    We tried to get Blake into the only autism school here (private), but there are rarely any vacancies and we have not been able to get in. I think there are more options available interstate and I have toyed with the idea of moving to get Blake into an Autism school, but any move would be a move away from his father, so it is a difficult decision for me to make.

    How are you going today? How is your son? Mine is in school after 3 weeks at home, so I am trying to get some study done.

  30. Matchy69
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    29 April 2021 in reply to Boudica

    Hi Boudica it is a thing where you got to keep trying and not give up.I hear of so many students that get sent home for behaviour problems and suspended.Parents changing schools trying to find one that won't send them home.Their is a special needs school in the big town but it is an hour away.

    I have been feeling so tired and warn out at the moment.

    Take care,

    Mark.

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