I'd like to connect with people who understand — Scope | Disability forum
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I'd like to connect with people who understand

lisap76
lisap76 Community member Posts: 1 Listener
Good morning all!
I am mum to 3 beautiful children, my 13 yr old son has recently been diagnosed (finally!) with ASD (Aspergers) and was also diagnosed Type 1 diabetic a year ago, and has faced many varied battles as a result of either one or other or a combination of both of these!  Also my 3 yr old although not diagnosed - is aggressive and struggling with expressing emotions appropriately, I find he reminds me of my older son as he grew up. My 16 yr old daughter is possibly on the spectrum too but copes well with everyday life and is an exceptionally bright young lady ?
I am also Carer for my mum who had Alzheimer’s and mobility difficulties, she and my dad live with us which can sometimes be a blessing but also a curse. 
Some days I want and need to scream! There just aren’t enough hours in the day or days in the week! Sometimes I crave for advice, or simply to rant....
I feel like my head is full of information about diabetes.....autism......dementia.......and there is no space left for thoughts about me. I have had my own issues where I discovered my partner had returned to a gambling addiction and the person who was my absolute rock became yet another problem to deal with. And anxiety then kicked in and another struggle BUT I refuse to be beaten!

But today is about reaching out.....finally......to see if I can connect with people who can understand. 

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @lisap76, and a warm welcome to the community! It's great to have you here.

    Thank you for sharing this with us- I'm sure many of our members will be able to relate to your feelings and experiences. I hope you find the community to be a friendly and supportive place, and do let us know if we can be of any assistance. 
  • JoSnow
    JoSnow Community member Posts: 2 Listener
    Hi Lisa. I’ve just joined too so I can ask for advice for my disabled daughter. However, I just wanted to pause and say hi. You are not alone and sound like you have lots to deal with mentally. Have you got any help within your local area - even if it’s places to ‘hang out’? I’m just thinking if you can all go somewhere together and your kids make friends then it might give you down time/space?
    welcome anyway. Hope you’re ok? 
    Jo x
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Welcome.

    The trouble with not finding time for yourself is that sooner or later you will break instead of bending and that would not be good for you or your family. However, it is something you need to resolve in your own way and I hope you manage to discover that way. I hope also that you find the connections you feel you need even if afterwards you decide it wasn't really what you needed. The only true way to discover what anyone needs is for them to try things out until they find what works.

    Good luck.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Ninny
    Ninny Community member Posts: 7 Listener
    Hello @lisap76 life can be a challenge can't it? And it seems for some of us it's more than for others. First of all i think you are amazingly strong. In my family most of it falls on me to deal with. I have learned a hard lesson. Which is to value and take care of myself. I pretty much burnt out. I  realised if I didn't take care of me there would be no getting back up. So I'm saying hi I understand. Just value you, love you,  self care. Best wishes ?  ♡ ✌? x
  • axwy62
    axwy62 Community member Posts: 142 Pioneering
    Welcome.
    I'll echo many of the other comments and say it's absolutely imperative that you look after yourself. Could you perhaps set aside an hour or even half an hour every day where you will not deal with anyone else's issues unless it's an emergency? Difficult with a 3 year old, but perhaps when they're asleep?
    It will take a while before everyone accepts that you must not be disturbed, but they might get there in the end. I used to ask 'is anyone bleeding', and if the answer was no, tell them I'd deal with it later.
  • newborn
    newborn Community member Posts: 832 Pioneering
    You have joined the carers asssociation, of course? And got advice on how to remove blood from stones, via professional support and relief, carer's own needs assessment, etc?  

    Locally,  mums net etc?   

     Financially , it is essential  for your mental wellbeing you take control in such a way your partner cannot endanger the security of the whole family.   Gambling and debt organisations will no doubt advise?

    Dnot be too much of a hero, you are no good to yourself or anyone, if you are collapsed in a whimpering heap in the corner (!) So, a bit of 'tough love' all round, perhaps?.


  • jackskellington71
    jackskellington71 Community member Posts: 3 Listener
    Hi Lisa im a mummy of 6  gorgeous kids 2 are almost 30 2 are early 20s and twins of 13 yrs 1 of 20 yr olds has borderline asperges but they refused to diagnose him as his real mum had just died this was wen he was 12 he was hard to manage but i took him on, I thought i was going mad cause sometimes i didnt understand the things he would come out with,Also my husband used to be at work most of the time so i never really spent alot of time with him now he has been diagnosed with several conditions and has been medically retired for 10 mths at home with me ive realised he has the same form of asperges, and to top it off 1 of the twins (13) is going through the process of tests for autism although i have said check for asperges unfortunately both my twins are  profoundly deaf with no speech the tests came back inconclusive, its a lot for 1 person to deal with i think u must be a really strong lady to not of buckled yet ive been on the verge several times but knowng my twins need me so much keeps me going 

Brightness