Hi, my name is MrsMwa! Just looking to meet other carers who understand this unique journey… — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Hi, my name is MrsMwa! Just looking to meet other carers who understand this unique journey…

MrsMwa
MrsMwa Member Posts: 13 Connected
Just looking to meet other carers who understand this unique journey…
Tagged:
«1

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,027 Disability Gamechanger
    Hi @MrsMwa - & welcome to the community. We have many members who are carers, & perhaps looking through one of the categories here on Scope may prove helpful. Please see: https://forum.scope.org.uk/categories/carers-of-disabled-children-and-adults
    Please do say if you have a certain set of problems, or need help/advice that isn't covered in this section, as we have members that may be able to advise. :)

  • janer1967
    janer1967 Member Posts: 12,827 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Hello @MrsMwa

    Happy Halloween! 

    Welcome to the community, I hope you are well. We have many users on the community who are carers or have past experience of caring, so I'm sure they'll be happy to answer any questions you may have.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    Hello everyone,
    I am new to using a chat forum to communicate with other carers in fact I do not know anyone else in my position and have realised I may need to start reaching out just a little (I am a very private person who does not like asking fir help) if I am to be successful on my journey having a young child with a learning disability and so this is why I have come on here hoping to find others in my situation.
    Thank you for the welcome :)
  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Is there anything in particular that you are struggling with at the minute @MrsMwa

    I'm sure you will get used to using the community and enjoy being here, reaching out for peer support is always a good way to help people feel a bit less alone and learn from the experiences of others.
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • Teddybear12
    Teddybear12 Member Posts: 1,350 Pioneering
    Hi @MrsMwa I was a carer for seven years for my daughter. It was the hardest job I have ever done. She was fit and healthy when at the age of 25 she was diagnosed with IPAH which is where the blood vessels in the lungs narrow no cure transplant her only hope. Very rare one in a million.  She was super fit went to the gym everyday, was in her first teaching job and was engaged to be married. Within three months she could not walk from the front door to the end of the drive. She could walk but not breath and walk. We went private for her diagnoses as she was deteriorating before our eyes. Within three months she had a Hickman line fitted and was on 24 hour IV medication which we made up everyday. I gave up work to look after her as I told her we were in it together. Then the fight began for everything we needed with funding for the medication, and benefits. I sometimes think it is just as hard if not harder for the carer as I had to look after her physically and deal with her mental health. I am also a very private person and very rarely ask for help. No one I knew was a carer and it was a difficult curve. The thought of going to a Carers meeting for tea and toast was a nightmare I was not prepared to go through, plus I could not leave her as she had blackouts. My whole life and hers changed overnight. We are all stronger than we think even when we are on our knees we carry on. We never looked at what might have been and just concentrated on what we could. She ended up in a wheel chair and on 24hr oxygen but we still went out when we could. She loved the theatre and no matter how long it took to get ready and how much stuff we had to take we went. My daughter was on different medication for three years then it stopped working and she went on the transplant list after 2 years she got a double lung transplant but only got one year of good quality of life and then she kept getting infections although you could have your dinner off my floor it was so clean. We made the consultant laugh as on her line was a black line where we had to clamp the line when we changed the valve after three months we had washed it off the consultant said it had never happened before. Unfortunately she died of sepsis. I do not know what it is like being a carer for a young child with learning difficulties but I do do know about being a carer and a mother. If you want to talk anytime please email me and I will help if I can. Being a carer can be a lonely time and sometimes we all need someone to talk to. Take care and Good luck.
  • Teddybear12
    Teddybear12 Member Posts: 1,350 Pioneering
    Hi @MrsMwa PS It is ok not to always get everything right and to have doubts. You can only do your best.  
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @Teddybear12.
    Your story is just wow what a journey you & your family went on I am so sorry that your daughter lost her fight but my gosh she sounds like she fought to the end & had you as an amazing parent to thank for that.

    I have too many worries too many questions so I will start 1 at a time.

    My child is in reception has a learning disability & other complex needs. I am his primary carer plus I have a young baby & work long hours at night so I can be around for school medical appointments in the day. I have tried to explain to some friends & my mother how hard it is to be a carer of a child with complex needs but I always get the whole “but you have it all so well put together parenting is just hard full stop u just have to get on with it”. Or they change the subject get uncomfortable tell me to be grateful what about people who cannot have kids? My child has spent majority of their life in & out of hospital. I have to fight for every inch of the support he gets plus fighting my employer who is angry that Ive needed last minute time off work for medical emergencies again recently. I am tired of having to be “strong”. I was told the other day at a visit to the special needs school my son will hopefully go to in however many years the waiting list is by the reception staff that they were shocked I am young they normally do not see younger parents in my position. It made me think like man life is tough I kinda have not lived much yet I try not to feel sorry myself as its not a helpful emotion. 

    I declined an offer to a birthday party for today for my child as he gets so sick easily I was worried that he may pick up something at the soft play centre. Now I am thinking did i sabotage his chance of having a friend? My child has no friends I cry as I type this because it is true he is so different he has no friends. I am trying but I am unsure a lot of times what to do. 
  • Teddybear12
    Teddybear12 Member Posts: 1,350 Pioneering
    Hi @MrsMwa Thank you for sharing your story. Part of the problem is people do not understand and do not know what to do so a lot of the time they do nothing. How do you manage with working at night, having a young baby and looking after you son ? Do you have any help at all? I can understand that you are crying as you write because you are having to focus on your life whereas most of the time you just get on with it. I will share a secret with you my daughter was also in hospital a lot of the time and sometimes it was a relief because it meant someone else was responsible for her. Perhaps you could let him go to a soft play centre and see how he got on. I understand he might catch something, but he is just as likely to catch something at school. Perhaps try a little freedom. Children need friends it helps them to socialise. Young children are very accepting and will probably notice his disability much less than an adult would. It is still early in the school term. Does he have any cousins or does a neighbour have any children who could come and play perhaps for half an hour to see how they both got on. The one thing I do know is that lack of sleep makes everything so much worse. Does your son sleep through the night? It is ok to be unsure just do what you think is best mothers very rarely get it totally wrong. We just make it up as we go along. You sound a brilliant mum who is doing her best under almost impossible conditions. You can write whatever you like on here no one knows who you are and will not judge you. Until someone has walked in your shoes they cannot possibly know what you life is like. I might not always have the answers but I am a good listener.  Take care.
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @Teddybear12
    Thank you so much for listening. You know sometimes it can feel like the odds are against you but I am happy that there are people out there who will offer advice to a total stranger like me xx
  • Adrian_Scope
    Adrian_Scope Posts: 8,178

    Scope community team

    Hello @MrsMwa, it's nice to meet you.

    I have three kids and I'm also a carer. So, I know it can certainly feel tough and incredibly isolating at times, but it sounds like you're doing an amazing job for your son and younger child.

    One of the most important things we can do as a parent is to love and support our children and, to be honest, it already sounds like you're doing both of those.
    @MrsMwa said:
    I am trying but I am unsure a lot of times what to do. 
    I'm going to let you in on a secret - I think most parents always feel a little bit clueless, I certainly do. How you're feeling is completely normal. 

    With regards to the friends and birthday party, it sounds like you already have quite a lot on your plate but would be possible for you to invite someone from his reception class over for a play date? A lot of kids around his age still play alongside each other rather than having friends and there will definitely be other parents worrying their child has no friends. 

    How is your little boy getting on at school? Does he enjoy going? 
    Community Manager
    Scope

    Tell us how to make the community better for you. Complete our feedback form.
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    @Adrian_Scope
    Thank you for the very warm welcome! It has a busy first two days back at school for my son. He received two further birthday party invites talk about eating my words. I have to say he has a lovely group of classmates, they have known him since nursery and I think they just see him as another kid not as the one with a learning disability. My sons needs are very complex so in terms of schooling I have had to fight so hard to have him included in absolutely everything but the school know by now I never take no for an answer and though at first I think they found me pushy they too have learnt a lot from having my son attend. 
    My son loves school he really does but the large classes are overwhelming and he requires frequent sensory breaks honestly he needs to be in a special needs school but wait lists are horrendously long but hoping he gets a place soon.

    In terms of being a carer I find working nights & my caring responsibilities really difficult I am always exhausted I would like to give up work but financially just cannot right now. We have no help with kids from anyone family or friends wise. Its difficult because I think people may be willing to take my baby to look after but I do not want my kids to feel they are being treated differently.

    I try very hard not to compare my life to other peoples though and do what suits my families needs which does mean I have very few/ no friends but I am trying to slowly connect with people who can understand this journey and I feel Scope is for me a great place to start!
  • Daniel_2021
    Daniel_2021 Member Posts: 56 Courageous
    Hi @MrsMwa I was a carer for seven years for my daughter. It was the hardest job I have ever done. She was fit and healthy when at the age of 25 she was diagnosed with IPAH which is where the blood vessels in the lungs narrow no cure transplant her only hope. Very rare one in a million.  She was super fit went to the gym everyday, was in her first teaching job and was engaged to be married. Within three months she could not walk from the front door to the end of the drive. She could walk but not breath and walk. We went private for her diagnoses as she was deteriorating before our eyes. Within three months she had a Hickman line fitted and was on 24 hour IV medication which we made up everyday. I gave up work to look after her as I told her we were in it together. Then the fight began for everything we needed with funding for the medication, and benefits. I sometimes think it is just as hard if not harder for the carer as I had to look after her physically and deal with her mental health. I am also a very private person and very rarely ask for help. No one I knew was a carer and it was a difficult curve. The thought of going to a Carers meeting for tea and toast was a nightmare I was not prepared to go through, plus I could not leave her as she had blackouts. My whole life and hers changed overnight. We are all stronger than we think even when we are on our knees we carry on. We never looked at what might have been and just concentrated on what we could. She ended up in a wheel chair and on 24hr oxygen but we still went out when we could. She loved the theatre and no matter how long it took to get ready and how much stuff we had to take we went. My daughter was on different medication for three years then it stopped working and she went on the transplant list after 2 years she got a double lung transplant but only got one year of good quality of life and then she kept getting infections although you could have your dinner off my floor it was so clean. We made the consultant laugh as on her line was a black line where we had to clamp the line when we changed the valve after three months we had washed it off the consultant said it had never happened before. Unfortunately she died of sepsis. I do not know what it is like being a carer for a young child with learning difficulties but I do do know about being a carer and a mother. If you want to talk anytime please email me and I will help if I can. Being a carer can be a lonely time and sometimes we all need someone to talk to. Take care and Good luck.
    @Teddybear12 I think you are so brave for firstly sharing your experience and secondly it's clear the love and devotion you have for your brave daughter. Although it had an utterly tragic outcome you can see the love you had for your daughter at the time, it's simply sobering.
    I completely agree that I think it's more difficult for carers. I've recently become a wheelchair user and have FND, I get plenty of support regarding meds, physio, mental health etc. My wife who is completely amazing and my carer gets zero support. We are new to all this so she is being assessed to become my "official" carer whatever that means, apparently she will hopefully get some support.
    As a carer I feel you take on the physical and mental pain of the person you are caring for whilst having to deal with your emotions seeing that person change and have the dynamics of the relationship change. I think carers are angels, I would do anything for my wife and I feel so guilty that I put her through this on a daily basis but she just gets on with it. Although we may not say it as often as we should I think we all love and value our carers so much, in my case if I didn't have a wife I wouldn't be here.
    I know that doesn't follow the thread and people may differ from some of my views but we can all agree carers do so much more than just care for us!
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,027 Disability Gamechanger
    @Daniel_2021 - I find your post as always so compassionate. I've hesitated to respond on this thread, as I didn't consider myself a carer. Our youngest daughter had breathing problems when she was born; one of her lungs collapsed, which was successfully re-inflated, but her breathing problems continued necessitating a tracheotomy at one week old. We had good bits that happened..... the night after she had a tracheotomy a nurse came in to look after her. By coincidence she was on her first night back after having a road traffic accident many months previously, where she'd needed a trache herself; I can't say how helpful she was in so many ways. After 3 weeks we went home (normally 3-4 months, but my physio training perhaps helped).
    Anyway our little one needed suctioning to keep her lungs clear 24/7. We had others comment, how do you cope? It's just something you do without thinking about it as a parent, partner or spouse; it's just natural to do the best you can for those you love, is all I can say. When we went to Gt Ormond St I was questioned how often our youngest daughter had been hospitalised....never after her first 3 weeks as I looked after her day & night when she had a cold, etc. Like Teddybear12 you could have eaten off my floor as had to minimise any potential cause of respiratory infections.
    My story doesn't end any better than Teddybear12's unfortunately, as we lost her when she was 23 months old. She was an amazing little girl, & because of her I've tried to help others after researching her problems, & finding out more.
    Don't feel guilty Daniel, you would do the same for your wife, & I'm sure she knows it.
  • Daniel_2021
    Daniel_2021 Member Posts: 56 Courageous
    @chiarieds Hi, thanks for saying that. Everything that has happened this year has been overwhelming, some of it in a negative way and some of it hugely positive...i'll be honest I currently find it easier to see the negative but I guess that's just part of the journey.
    I'm so sorry to hear about your daighter. Again when you hear the sheet tragic circumstances it is massively overtaken by the love shown, I find it beautiful to the point of heartbreaking. I think anyone who cares for someone is amazing but when a child is involved more so given the communication barrier due to their age.
    I now understand why you are so supportive on here and what drives you, what a lovely legacy and selfless way of spending your time. It also makes me more grateful for the responses i've received from you in the past.
    Thanks,
    Daniel 
  • Teddybear12
    Teddybear12 Member Posts: 1,350 Pioneering
    Hi @Daniel Thank you for your kind words. You are still in the early stages of accepting your "new life" and frustration and anger are still very much to the fore. You will with your wife's support  get there. Once you have everything in place and are more familiar with where to get support from it gets easier. I was my daughter's voice as she got exhausted easily but I never took no for an answer. A newly qualified consultant once said to us that he did not have a magic wand my reply well we will see someone that has. Carers do what we do because we love the people we care for and try and lessen their pain by sharing it.  Take care and good luck for the future.
  • MrsMwa
    MrsMwa Member Posts: 13 Connected
    Your stories are all so harrowingly raw but the way in which you are able to tell your stories with positivity is so warming. Sorry if I sounded a bit negative, I am acutely aware that I will be my child's carer for the rest of his life which whilst I love him with everything in me makes me sad sometimes and sometimes angry for him because he will only know this life the one with drs, medication SEND provision 1:1 TAs etc. I am so greatful to him though he has made me really grow and mature and made my passion for SEN so intense. I hope to one day be a SENCO I think I would be good at it I have had to navigate this experience blind folded and am still making my way through but if I could one day help another child like mine that would make my day. 
    I always choose to see the positive in being a carer because my son is my absolute bestie but I am only human and sometimes cannot help ranting or admitting I am struggling.

    hugs to all take care x
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 567 Pioneering
    Hi @MrsMwa

    Welcome to Scope's forum. It is great to see you have joined us. I am really pleased to see that our amazing community was able to support you. It is absolutely fine to be negative or positive about caring responsibilities. Caring absolutely does come as a rollercoaster and people will be in different circumstances and time periods in their journey of caring. Though, you can still empathise with one another and support each other which is incredible to see. Lived experience is so valuable. I'm not a carer but I use my own experiences with living with autism to support others with SEND and it has indeed got me to where I am today which currently involves studying for a Masters degree in SEND. Keep following your passions and be determined. Sending hugs your way too  :)
    I am a Scope volunteer. I have knowledge about the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • Teddybear12
    Teddybear12 Member Posts: 1,350 Pioneering
    edited November 3
    Hi @MrsMwa You are allowed to be negative some of the time some days are really bad and you wonder if you are strong enough to carry on caring. You just cope as best you can. The life you have now is your normal so do not compare yourself to anyone else. You would not be human if you did not rant or admit you are struggling.  You must also question why. Your ambition to one day be a SENCO using your own experience is a brilliant idea. Big hug. Take care. x
  • eilishandliam
    eilishandliam Member Posts: 3 Listener
    Hi @MrsMwa

    We are new to the community also.

    I won’t go into too much detail but we have 3 children with learning disabilities.  

    Like others have said feeling negative is ok. Nobody prepares you for being a carer and to a certain extent you have to learn as you go. 

    We found at the start we had a whole swirl of emotions including sadness, fear and anger. This can also lead to guilt about feeling that way. I think that is normal for everyone. 

    We love our kids to bits and there are lots of good times with fun and laughter but you can also feel pressure to constantly show a “positive” outlook to friends and family.

    Having someone you can share your feelings and experience with in an honest an open way we found helpful. I am sure this community will give you that outlet. 

    Also we found some of our friends were really keen to help but felt unsure how to do so. With our children’s needs they can’t really be looked after by people who don’t know them well. However this week a friend dropped off a casserole so we didn’t need to do dinner. These small kindnesses go a long way. So if someone says “how can I help” don’t be shy in asking!
    Some people though I agree it’s maybe easier just to say things are fine as you know they just don’t get it.

    in terms of birthday parties, like others said we always found other children the most accepting of all, particularly at a young age.

    One thing you must remember is to also think about yourself and your wellbeing. Your child needs you to be the great parent you are.

    Sorry if my thoughts are bit random. 

Brightness

Complete our feedback form and tell us how we can make the community better.