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Topic: struggling with special needs children

  1. Matchy69
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    5 January 2021 in reply to Sleepy21

    Hi sleepy my son slept through to just after 6am and I made him pancakes for breakfast and saved some for him tomorrow at least I get a couple of days of toast duty.I have been awake since about 3:30am.I hope you can have a nap today.

    Tale care,

    Mark.

    3 people found this helpful
  2. Sleepy21
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    5 January 2021 in reply to Matchy69

    thanks mark, same for u!

    pancakes sounds like a good break from toast-duty

    it's nice that you cut up watermelon for him and make him food he likes

    i'm quite sleepy today myself.... ;my friend and i went today to pick up a set of drawers from gumtree. They are so heavy and we couldn't carry them, i'm going to have to as a neighbour to help me bring them into my room

    Bit tiring but they look nice

    2 people found this helpful
  3. Jstar49
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    824 posts
    6 January 2021

    Hey Mark,

    It looks like the others have had some good suggestions. The star chart is an excellent one. I can remember my sister (when she was still talking to me lol) telling me about it for my eldest. I found it hard to be consistent with it, but kids do love them hey. We used the reward of buying a toy I think, when it got to a certain number of stars.

    It sounds like you're really worn out by all the caring work you're doing.

    You absolutely have to look after yourself, and do whatever you can to make life as easy as possible. The fruit thats easy to get is great, and you've thought of so many ways to work around the difficulties for your son. I'm guessing all the professionals you deal with have good ideas too.

    So what do you do for you? And do you show your kids that you are a human being with needs too?

    Maybe, I dunno, maybe you can think about changing it up a bit, every now and then. Like a picnic for dinner, outside on the grass.

    And maybe you can encourage your son to do some things for you sometimes, so it's not all about him. Let him bring you pancakes, or pour your milk on your cereal. Remember to encourage him and take the time to enjoy his achievements, which can be sooo hard when we're tired, but could actually help you to connect and be present. Beware the zombie state!

    I had this amazing drink at my friends house recently, it's like a b-vit fizzy tablet with guarana in it? Not sure if it was that, or the zinc tablets, or the vit c, but I felt great! After feeling really tired too. You mite need some B vitamins...

    The stuff with your daughter sounds really hard too. My friend has a d with down syndrome. She really struggles at times, and found the yr she turned 18 to be the most challenging so far. There's just so much she wants for her, and the system with all it's assistance is really quite limited. It's such a challenge for her, and for you it sounds like.

    It sounds like you are feeling really responsible for how well your daughter does, and what happens after school. With my eldest i remember feeling quite anxious that she wasn't doing well, and then she started to self harm and that really threw me. If I could go back, I guess the first thing I would tell myself is, Don't worry about school! Protect the relationship, make time for her, love her. She was making decisions I didn't even know about.

    Your kids are lucky to have you.

    Take care, of you,

    J*

    1 person found this helpful
  4. ecomama
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    6 January 2021 in reply to Matchy69

    Hey Mark

    I'm glad to hear you're doing the night nappy. I know they leak at times but with an absorbent mattress protector like the ones they use in Nursing Homes ON TOP of the sheet then that could help too.

    I found star charts were good but ONLY if there were very regular tangible rewards after 3 stars to begin with and phasing out, if behaviours could be maintained.
    eg 3 stars meant a trip to the park for 30 mins.
    Or a Freddo or something acceptable to the parent and motivating for the child.
    IE something the child wants.

    it's VERY exhausting at first keeping it up with stars and rewards etc.

    But if the goal is reached then it's less work in the long run.

    Love EM

    1 person found this helpful
  5. Matchy69
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    6 January 2021

    Hi Sleepy,Jstar and Em, Thank you for your caring support.Last night the kids went to bed early and so did I and I woke up about about 3 times to go to the toilet.I have woken up so tired again and might see when my doctor comes back from hoidays.I have seen other doctors there but don't really them and feel comfortable with them but if I have to see one of them I have one in mine.My son has just woken up and he will be a 'l excited about seeing the phsio physio and then lunch at the cafe opposite the park though rain is forecast today but they have been saying it all week and hasn' really rained but because today I am going to the big park it probably will and it rains a bit more on town.

    Sleepy that is great you got a set of drawers and they must be soldly made if heavy.I need a new bookshelf and might have a look on gumtree for one.I was going to build one but pricing the wood works out expensive.I kept some of the pancakes for his breakfast this morning.I am surrise he isn' up yet as I can here in chatting away.

    Jstar I did buy all these matchbox cars and mini trains and things as rewards and have a draw full of them for his reward so I will try the chart again.His pschiatrist depressed me by saying he might never be able to use the toilet and that thought is stuck in my head.I am worried about my daughter as she turns 17 next month and not sure if she will get the support she needs now she is becoming an adult.I had to renew her carer allowance I get last year when she turned 16 and centreink just cut it off and didn't send a letter or anything to say we had to apply for adults one.

    HI Em yes they do leak from time to time and I don' think it's helping with all the water melon he is eating.I do have a plastic sheet underneath his sheet so it' only the top sheet over the top o have to change.I will start the rewards chart again and see if it helps.Struggling with my tiredness I sort of give up with things like that.Hes up so I will leave it there for now.Thankyou all so much.

    take care,

    Mark.

  6. Jstar49
    Jstar49 avatar
    824 posts
    6 January 2021

    Hi all,

    Em I'm glad to hear you say that star charts are very exhausting, and only works if the rewards are very tangible and regular,- 3 stars sounds like a good place to start. I felt like such a slacker for not being able to keep it up,and the way you phase it out must be important.

    Everything extra does just take that extra bit of energy, hey Mark.

    It sounds like your son is really motivated by the park-noted!

    I remember how surprised I was at what my d chose as the reward. Often it was way too big or expensive lol so it was a bit hard to come up with something workable. (and easy and affordable each week!)

    So much work in nappies! I can imagine it was disheartening to hear that your son might always need them. Perhaps he could become more self responsible with it, apart from the toilet training. Like help with the other tasks which accompany it all, stripping and making beds, pulling nappies on and off, putting them in the bin.

    Sorry, I'm not sure what he's capable of and what he's doing already.

    Hang in there. Sleep whenever you can.

    Cheers,

    J*

  7. Matchy69
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    7 January 2021
    Hi all,my son is starting to ask me awkward questions why I don't live with his mother anymore and did I use to live with her.Not sure really what to say.
  8. Paw Prints
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    7 January 2021 in reply to Matchy69

    Hi Mark,

    I think it would be a good idea to talk to his mother about how to answer this so that you both explain it in the same way... if he is asking you he will probably ask her as well.

    Paws

  9. Matchy69
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    7 January 2021 in reply to Paw Prints
    Hi paws thanks for your suggestion it would be easier if my ex and me were on the same page.We try to be with most things.My son tells everybody everything like the teachers at school and the family I really have to be careful how to approach this.
    Take care,
    Mark.
  10. Sleepy21
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    7 January 2021 in reply to Matchy69

    HI Mark

    how are you doing, have you managed to get some rest?


    Sorry I don't know much about parenting but I'm sure you're trying ur best. Hard to answer those tricky questions.

  11. Matchy69
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    7 January 2021 in reply to Sleepy21
    Hi sleepy I will be able to get a rest tomorrow afternoon when I drop my kids to their mothers for a week.You don't have to be parent to come on here.Its just nice to know someone's reading and cares.Kids can have a lot of tough questions.
    Take care,
    Mark.
    1 person found this helpful
  12. Sleepy21
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    7 January 2021 in reply to Matchy69

    Thanks Mark i hope you get a break over the weekend

    im glad it's okay that i don't have parenting advice :)

  13. Missing user
    Missing user avatar
    7 January 2021
    Hi Mark, I just wanted to pop on and check out your thread to say hi. I'll reply on my own thread when I feel like it, which isn't right now. But I wanted to say I'm sorry you have special needs kids, but you're a great Dad and person, and you do your best to look after them. I'm sure they love and appreciate you and everything you do for them. I haven't read through this thread yet so my apologies. I hope you're doing ok.
  14. Matchy69
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    7 January 2021 in reply to Missing user

    Hi Tayla good to see you on here.I hope you are doing ok but if not I am here to talk.Thankyou for your kind words.

    Tark care,

    Mark.

    1 person found this helpful
  15. Missing user
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    7 January 2021 in reply to Matchy69

    Thanks Mark, I hope you're ok too.

    I'll try and reply tonight, otherwise tomorrow or in a few days, on my thread. Thanks.

  16. Matchy69
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    9 January 2021
    Hi all a few days break from my kids and I am really struggling today with my health.Hopefully I will be better tomorrow.
    I have a chart for my son's toileting and one for brushing his teeth that I Mark off and will give him a reward.My son now does dress himself in the morning and it the first thing he does in the morning though half the time he puts his clothes on back to front.
    My daughter keeps talking about getting a job and moving out of home at the end of the year.I am not sure how she is going to achieve this with her anxiety and selective mutism.I can't even get her to go to the shop for me.I really need to work on her confidence It is really hard when I don't have any my self.
    2 people found this helpful
  17. Sleepy21
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    9 January 2021 in reply to Matchy69

    Hey mark hope you are doing over over the weekend with ur kids at their mums

    sounds like you are doing ur best to give them the best

    i love the idea of the chart for ur son, sounds like its paying off....

  18. Matchy69
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    9 January 2021 in reply to Sleepy21
    Thanks Sleepy for your kind words i try my best as a parent.It is hard when I am struggling myself .I will try and get some sleep soon,my cat has joined me on my bed and is snuggling up to me.
    Take care,
    Mark.
  19. Jstar49
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    824 posts
    11 January 2021

    Hey Mark,

    Hope you're feeling a bit better and have gotten a chance to rest.

    Wow thats amazing that your d wants to move out of home and get a job. Maybe that will be the turning point for her. I know I was pretty amazed when my d's work experience at a cafe turned her from a surly-won't answer- the phone teenager into a chatty "Hi, how can I help you" waitress....! I could not believe it! I'm sure it's totally different with your d and with her needs but hey, kids are amazing creatures. I think one of the best things we can do for them is be honest ( re your qu from your son lol) and believe in them. They are not us, mine have proved that time and time again. And we are not our parents! Thank God!

    BTW with your son, simple is probably best lol. whatever is true and you are comfortable with. I'm sure our kids say the most revealing things at school- our teachers have hinted at it. Teachers learn to take it with a grain of salt. It's all through the child's perspective!

    Feel free to ignore any and all of what I say, and trust yourself.

    Cheers,

    J*

  20. Matchy69
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    12 January 2021 in reply to Jstar49
    Hi Jstar thanks for your lovely reply.We will see how my daughter goes with her final year of high school this year and how she manages that ok.She still has other health problems as well as mental health problems.She is saving up for a car at the moment and I have opened a bank account for her when she was 7 and been putting money in there every fortnight and have done the same with my son.My son now wants a chart for chores do I will probably have three charts for him.At least when my son isn't here I can stay in bed a bit longer though I have been awake for awhile but just wake up so tired with no energy these days in
    Take care,
    Mark.
    1 person found this helpful
  21. Jstar49
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    824 posts
    13 January 2021 in reply to Matchy69

    Hi Mark,

    wow you are organised and disciplined, to have those bank accounts for them. I am very irregular with my youngest d’s account deposits. Always wanted to do it with my eldest but never found the money as a single mum. Although looking back I can see that it was a choice, as that was the days of a single parent pension, and I was paying quite low rent. It’s all relative hey. So hard for single parents now with the payments.
    3 charts! How will you keep track?! If it’s helping to motivate him tho then that’s awesome.
    our kids are funny aren’t they, they get ideas and just think it will happen exactly the way they imagine. My d wanted to move out at 16 with a friend. Had no idea about bonds and references etc. so positive that she didn’t need us! It was a series of delicate conversations on my part- a bit more blunt by my partner lol! She ended up finding her way. Your d will too, hopefully with your assistance and listening ear for her problems.
    The tiredness you describe sounds very hard to deal with. But given the situation, may I suggest that you are very gentle with yourself? It’s not surprising you feel tired and are finding everyday life hard.
    Have you considered what support systems you have in place for yourself? If you haven’t any friends you can talk too do you have professional support, just for you?
    warm and caring thoughts

    J*

  22. Matchy69
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    14 January 2021 in reply to Jstar49
    Hi Jstar yes the kids will have more money then me and it so easy to transfer money into their accounts these days,don't even have to get out of bed.
    I will give the charts another go.I think I get the kids back Monday.I just gave my ex my car as she needs a new car so I only have my bike at the moment for transport.
    Schools coming around fast and Christmas seems like a distant memory now.I will have to go to the high school next week and fix up my daughter's fees for one final time for her.Think this time next year I will not have to worry about her schooling only my son's.
    Take care,
    Mark.
    1 person found this helpful
  23. Jstar49
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    824 posts
    15 January 2021 in reply to Matchy69

    Hey Mark,

    So true! I was just writing about how it feels close to the end, or the start- whichever way you look at it. A bit sad, but I know we all do better with routine so.....

    One last year for your d! I hope it's a really great year for her, and that she grows in confidence and ability. It's an awkward age, so hard to watch!

    Charts must be a bit tricky when they're not with you all the time. Does their mum use charts at all? Co-parenting is hard hey. So many conversations, and all the reasons in the world to avoid them. The same reasons that caused the break up possibly!

    Hows you garden going?

    I harvested some basil and made pesto today. Good batch too. Feels esp good to have something from the garden when there's not much growing atm.

    How are you going getting support for you? Have you spoken to anyone yet?

    Cheers,

    J*

  24. Matchy69
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    16 January 2021 in reply to Jstar49
    Hi Jstar my ex I try to keep a similar routine and does the same chart as I do.It can be hard at times depending on what mood my ex is in when trying to discuss the kids needs.Some times she won't talk to me at all and she can be really nasty towards me at times.I hope she isn't to nasty to me at the moment as I have lent me my car as she doesn't have one at the moment.I have 2 motorbikes on the road so I have transport .
    My garden is looking really good after the great bit of rain we had.I am starting to get my vegie garden ready for my winter crop digging in plenty of organic mater.Probably plant up around Easter.
    I haven't booked into to see my doctor yet.I am going to leave it to school goes back and everything gets back to normal if their is such thing these days .
    I am process of getting another shed to put up so I will have a workshop for my motorbikes.
    Take care,
    Mark.
    1 person found this helpful
  25. Jstar49
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    17 January 2021 in reply to Matchy69

    Hey Mark,

    You sound busy!

    Motorbikes are so much fun. Not so useful with two kids tho....Hope your ex gets her car sorted out soon.

    Not nice when she can be nasty I bet. Pretty great that you can cooperate on the charts tho- that will make it work better.

    Good to hear you have a plan. There mite be some men's groups in your area too- mens shed? I know you're sort of too young probably, but I have heard they are pretty accepting. Could be great for your son too. I don't really know, I guess they're all different.

    Me too with the gardening, just been watching the weeds grow but starting to get interested again, shall turn the compost soon and maybe get a few seeds in the ground. Late summer plantings can last well into winter here, last years zucchini was amazing. I tried growing brussel sprouts but that was a waste of time, as was the brocoli, and mostly the cauli. I need to simplify this year I think, and grow what works well and gives a good harvest. Winter doesn't get cold enough where we live.

    Cheers,

    J*

  26. Matchy69
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    18 January 2021 in reply to Jstar49

    Hi Jstar just a lot of drama from my ex.She was texting crazy stuff all last night.Shes had a falling out with her dad now and she will have to have my car now as her dad won' buy her one now.I have to find some money to buy her one now.Getting more and more depressed everything.

    Tand care,

    Mark

    1 person found this helpful
  27. Jstar49
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    824 posts
    18 January 2021 in reply to Matchy69

    Hi Mark,

    wow that sounds a bit intense! No wonder you’re feeling depressed! I think you mentioned finances aren’t great atm as is.....

    Forgive me if I’m being rude, but how is it your problem? I mean, I know you’re a nice guy, and you try and help out whenever you can by the sounds of it, but you are no longer together. So separate finances surely means no obligation.
    there may be limited choices,

    but there are choices.

    she is choosing how she treats you, for a start.
    you can choose how you will respond.

    take care Mark, you are worth it

    J*

    1 person found this helpful
  28. Matchy69
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    19 January 2021 in reply to Jstar49
    Hi Jstar I just feel responsible for things with my ex as she is the mother of my children and it does make things much easier for me and lest painful for me mentally.Their are stories I can tell about being married to her but I won't but it was not easy at all.I got my children back for another week.My son wanted me to make pancakes so I have done that and save some for him for tomorrow.I still need to go to the high school and pay my daughter's final fees.I haven't heard from the primary school yet as they usually have a meeting about my son about strategies and goals for the year before school goes back.
    Take care,
    Mark.
    1 person found this helpful
  29. Matchy69
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    20 January 2021
    Feeling very anxious about school going back next week.It has come around so fast.I ended up not doing anything I had planned on doing due to appointments that never end with the kids and stuff going on with my ex.Thats my life i suppose it' the way it's meant to be.
    2 people found this helpful
  30. ecomama
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    21 January 2021 in reply to Matchy69

    Hey Mark

    It seems pretty rough.. you're being very kind but a bit too much like a verbal punching bag atm.

    The holidays DO go too fast for some parents! For others they're too long lol.

    The most I would do about the car situation with ex is pay half. You could say you'll meet her half way.

    It sounds harsh but she really needs to stand on her own 2 feet, altho I still think you're being a wonderful dad by looking after her problems too!

    Let the schools contact you. The kids still have a right to attend school whether the school's prepared or not.

    Enjoy these last few days.

    About the texts... your ex wife can be charged under Laws around harassment. (My eldest d and myself have had to deal with this).
    I would NOT respond after say 8pm. Just turn your phone to silent.

    She has no right to harass you Mark, no matter what her problems are.

    If they pertain to the kids that's another thing but she till doesn't have the right to harass you no matter what.

    BOUNDARIES. Even with your phone is important.

    Take care
    EMxxxx

    1 person found this helpful

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