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Differing parenting styles and how it makes parenting a child with a disability 10 time harder

MrsMwa
MrsMwa Member Posts: 13 Connected
My spouse and I differ greatly in our parenting styles which is hugely frustrating. Our eldest child has LD and complex medical needs resulting from severe HIE at birth. I am proactive booking hospital appointments, staying on top of meetings,ehcps,various therapy sessions. My spouse has to be told what to do they will not complete therapy exercises such as SLT or OT unless I tell them 10 times to do so and also what to do even then they sometimes forget. Having a child with complex needs is hard going but having a spouse who does not take an active role is difficult. I will admit I am the type of person to micromanage everything but I have tried biting my tongue taking a step back to see what gets done and nothing gets done. They are able to supervise our child well and are a very loving & kind parent but do little in way of learning for example with SLT our child is non verbal we have been advised to give them choices with food etc to encourage them to request for items using a non verbal means of communication. My spouse will just give them the food they feel they should have which does not encourage our child's independence. 
My spouse claims they do not help me out because I like things done a specific way and they do not want to interfere and get me annoyed. I work shifts twice a week at night and have explained to my spouse that I need to give up work as it is hard being primary carer also having a baby too and working night shifts but they keep alluding to the fact that I have a stable job and some income to support us but I am burnt out. 

Can anyone relate?

Comments

  • Teddybear12
    Teddybear12 Member Posts: 1,349 Pioneering
    edited November 14
    Hi @MrsMwa My husband and I split up when my daughter was ill he could not cope his words. I told our daughter when she became ill that we would deal with it together. Not only did my husband and my daughter's father not help sometimes he just got in the way. I am also very organised and like to do things my way. He was no support at all. I had to give up work as I was doing drips, oxygen all kinds of things, hospital appointments . I was lucky if you can call it that that my daughter was older and we had paid the mortgage off. Do you have cards with pictures of food on so your child can choose? Does your spouse  work?  I replied to one of your other threads and said then I did not know how you managed with a child with LD, a baby and working nights. It really would help no one if you become ill through exhaustion. You cannot do everything primary carer, mother to a young baby and work nights. Sorry for all the questions. Take care.
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @Teddybear12
    Hi again hope you are well,
    Do you know what my spouse and I split roles they have the baby all the time & I have my child with complex needs so they definitely do their share of child rearing but a lot of things majority I have to spell out clearly what needs doing, when it needs doing & keep reminding & reminding which is exhausting.

    I will not bash my spouse but the thing about being a parent of a disabled child has shown me is just how different people cope with a life changing scenario. I am a bit of a stress head il admit but I always stay on top if not mostly ahead of what needs doing with our disabled child. My spouse sort of gets in a muddle forgets things or get things incorrect. Its frustrating as you have to be on top form looking after a child like ours but my spouse always seems ‘somewhere else’

    I do think its a personality type thing but I have come to realise that I am 100% at fault for doing it all majority of the time. As much as I know things will not get done if I do not intervene being the rock of the family is what has led me to being exhausted.

    I worry for the future I own nothing, no savings despite working my butt off the little I do earn goes to private medical SLT, OT etc as the nhs are overstretched and the resources not enough.

    My spouse is looking for work as the pandemic meant they lost employment. My pride means no one in my circle know that I'm primary care giver to our disabled child or that its me working whilst spouse looks for work because I know they will just say what the hell am I doing taking on everything like this. I also think wow i am struggling with 1 child to look after all the time with his needs how would i cope if my spouse did not have the baby but again baby is home all time my spouse does not drive (I hate driving major anxiety over it but i do it because I have too). 
    I am not a winey person but I am just bone tired I hate having so much responsibility on my shoulders I feel like Ive lived a fair few life times already.

    How did u cope as a single parent?Did u have support around you? I have no friends these days and family pulled away over the years as they feel I settled in life…. My immediate family are all busy with their own lives. I think as the baby grows maybe it will be easier but I worry as Ive hardly had chance to bond with them being with my eldest all the time. 

  • Teddybear12
    Teddybear12 Member Posts: 1,349 Pioneering
    Hi @MrsMwa  You do not sound a winey person just someone who is doing her best to hold everything together and do the best for your family. For the first three years after my daughter was diagnosed with IPAH my husband was fine he helped and did his best. After transplant when she was only well for a year also fine it was when she became ill again that he said he could not cope any more. I had to cope or what would have happened. In some ways it was easier being a single parent I only had to care for myself and my daughter. I lost several friends as I was never available to chat to or meet up. I was also tired all the time. I used to get up at 2.00am every night to flush and disconnect the line and then sometimes I would just get back in bed and she would need the toilet get up again and get her and the drip to the bathroom and then settled again. My parents were ill at the same time so no help there. I had one of my brothers who would help if I asked him although he never thought to offer. If you did not do all you do for your eldest would you be happy it not being done? If your husband found work would you be able to manage the baby and your other child? From what you have said I think you are doing a brilliant job as you say as the baby gets bigger things should get a little easier. How does your eldest react to the baby ? Could your husband have the eldest for an hour a day so you could spend some time with the baby ? I would not worry to much about your eldest not getting a choice of food when I was a child being one of four we never got a choice just a dinner put in front of us and we ate it. I am just sorry your life is so hard. Any time you want to rant or just chat just post I will reply. Take care. x
  • ellieflower3
    ellieflower3 Member Posts: 186 Courageous
    Hello, I hear how tough seems to be, how are you now?
    Lilly Josh  <3
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @Teddybear12 wow you really are amazing what you did for your daughter. I will definitely be messaging you again for advice I think you get me without judging me. 
    On a positive note my eldest had a very successful open evening today it was so lovely seeing his hard work at school with his 1:1 TA feeling very proud. 
    Only annoying thing is Ive come home to find my spouse forgot to put the oven on for dinner for my eldest (who eats a very limited diet as it is due to sensory issues) arrrrgh like seriously I could not make this stuff up but c’est la vie I have a horrible head cold so lots of pain relief for me & an early night xx
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @ellieflower3 Hello thank you for messaging. I am not feeling well at present but Ive had a decent day lovely open evening at school was lovely seeing my child's work made me feel very proud. I hope you are keeping well x
  • Teddybear12
    Teddybear12 Member Posts: 1,349 Pioneering
    Hi @MrsMwa So pleased that open evening at school went so well. You must have been very proud. I hope your cold does not last to long. Any questions you know where I am. Take care. x 

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