I am so drained and life feels exhausting

Hi Everyone I am new to the forum

my names kayleigh, I have 4 children, 3 boys and 1 girl.  Their ages are 10, 4, 3 and 1. My 4 year old has ASD. I was just wondering does anyone ever get down with life just the pressure of it all, the repetitiveness, the meltdowns and behaviour ect? Or is it just me? 

Its so bad and extreme sometimes that I feel like I can’t carry on and do this anymore. It’s so draining and I just don’t feel like I have any sort of life. Am always tired, am mentally drained, I have zero energy!

please does this get any easier/better? 

  • I'm new too, feeling at the end of my tether with school 

    My daughter is 14 with ASD an I totally get what you mean. I regularly feel mentally and physically drained. 

    Make time for yourself- is there someone who can give you a bit of respite? You need to take care of yourself to be the best mum to take care of your children. Finding the blalance is important for you all...... hugs 

    there is lots of support networks out there, find some near to you. Don't be afraid to ask for help!!

    things do get better as you get to know what triggers different reactions and what things can help - my daughter now relies on her iPod and noise cancelling earphones whenever we leave the house to block out external sensory input. It's made a huge difference. 

    Find out what support school can offer too, it's a journey but at least you're starting it early- my daughter wasn't diagnosed until she was 12 and now it's a race against time to get things in place to support the second year of her GCSE's 

    xxx

  • Hi Kayleigh

    Just wanted to let you know you're not alone. I have a 6 year old and 3 year old. We are currently going through the long process of trying to get some kind of diagnosis for our 6 year old. We suspect he has Aspergers. He is highly emotional and can 'blow' over almost anything. I try to anticipate what might 'set him off' and often I feel like it's like walking on eggshells around him, but no matter how much I try he often has meltdowns out of nowhere. It's absolutely exhausting and it does feel like there's just no break and you can never switch off. He is extremely demanding and can't seem to grasp other people's needs at all, and is very egocentric. I often feel guilty that my 3 year old doesn't get anywhere near as much attention as he dominates every situation. I find it incredibly hard just with the 2 of them. We have good days and bad days, and when we have a bad day, I do beat myself up about it, replaying incidents in my head and thinking about how I could have done things differently. I suppose all we can do is focus on the good days as much as we can.  I really don't know what the answer is but just wanted to let you know that you aren't alone in feeling like this.

  • Your problem sounds similar to mine.  My husband is so stressed and anxious because of Luke his OCD overtakes everything and he does nothing thats proactive.

    Hes in a mood all the time. We either argue or dont talk to each other.  Ive begged him to get some help but he wont.

    Ive had to change my life by getting months of counselling and going on antidepressants which helps me get by but he wont try anything.  Its so frustrating isnt it.  I cant really help you on this one Im afraid as I cant help myself either.

    The only thing I could suggest is try to get funding from the Council to give you some respite. Maybe a youth club for special needs or a care centre if theres any in your area. Xxx

  • Hiya.  That sounds a bit more positive.  When you get the assessment make sure you exaggerate everything.  I know its really hard but you have to make things seem even worse than what they already are.

    It would be great if all your children went out as they would have a great time and you could do whatever you wanted.  I really hope you qualify as its just what you need.

    If all else fails do you maybe have any savings where you could pay for it if you dont manage to get the funding.  Definitely try to get the funding first though.  Let me know how you get on. Xxx

  • I think so.He is just in his corner which is not fair.We argue a lot because I am so drained and I need his help I don't have nobody to ask for help family and friends are in Portugal here in the Uk although I made a few friends I don't feel going to them and asking for help.

  • I live in Liverpool and yes the uk. His paediatrician has done a  referral for “safe families” and “fusion” apparently they take the on days out and will even take siblings along so your getting like a proper break but apparently it’s hard to get respite as there’s not much funding for it so hopefully when they do my assessment I qualify for it.

    Sounds great what your explaining I would be pleased with 2.5 hours it’s better than nothing at all. Grateful for anything really hun  xxx

  • Hi Sonia.  Is your husband like that because he struggles with the diagnosis?  My husband is similar where he ll go to work and I have to do everything, yet he thinks he keeps the family together.  My husband has anxiety because of Lukes diagnosis which turns into OCD, so instead of playing with him, all he can see is what needs tidying or straightening.  Me and my husband constantly fight and argue but my husband doesnt change either.  Sometimes I think Id manage much better on my own as Id only have my sons stresses rather than his dads aswell. X

  • Hiya. Aw thats awful that your mam wont help. Thats what my in laws are like so I dont ask anymore either. 

    I contacted the Children with Disabilities Team within Social Services at my Council.  They did an assessment and they have a team of Leisure Link workers who take your children out to give parents a break.  Luke goes out once a week for 2.5hrs on an evening with one of the workers.  I also managed to get 5hrs a week help in school holidays as thats when I struggle the most.  She takes him to parks, softplays, meals out etc.

    We have a respite centre here and I have just managed to get Luke in there with funding from the Council.  Its only 11 days a year but I can use it in school holidays and weekends.

    Can I ask whereabouts you live.  Are you from the UK?  xxx

  • Hello there , I am new member as well

    My name is Sonia and I have a daughter with 4 year's old with ASD and a husband that is in completely denials and workaholic. Seriousily he is working 7 days a week 11 hours per day living my own all the time.My daugther loves him so much but he is not giving her any support or attention that she needs.I am exhausted all the time and I feel stupid to remind him to give her affection.I already talk with him so many times but nothing changes.I am so tired and alone on this

  • Hey when I said family support worker, I mean like a worker that comes in and helps the family. Not actual help from my family haha. I don’t really have much to do with my family either. 

    If you google disability support services in your area or autism support groups. Parent/caters support forums I’m sure you will find some groups you could attend or a number you can phone and receive a bit of support, don’t suffer in silence because how you’re feeling is totally normal and you’re not alone xx

  • Hi Hun

    i have asked family for help to just be told no sorry! Been told no that much that I have stopped asking, I have been on the phone crying to my mum a lot recently and in the past but it seems she’s not interested and lacks a heart as she’s a very cold person. She’s that cold I call her the ice queen. It’s ok though cos there’s always that day when people will need you and you think well no actually because where was you when I needed you most? 

    Can I ask what can the council do? Xxx

  • Hi hun.  Everyone goes on about how important it is to get the diagnosis, then when you do you have to battle to get any help.  I have social services involved but i hate using them.  Its one battle after another which is exhausting in itself without having a special needs child to look after too.

    Luke was 6 before they would start the ADHD assessments and it took 18 months to get the diagnosis.

    I was on anti depressants before but only 40mg where I didnt notice much difference but now I am on 200mg and I am much more in control.  I take Sertraline and Ive had no problems with it. Would counselling help you.  It works for some but not others.

      I know what you mean about no one offering their help.  My in laws wont help us.  I have my mam and dad but they struggle with Luke as he is quite strong.  Could you maybe ask anyone for some support rather than waiting for them to offer.  What about your local council?  Mine are rubbish and I have constant battles but I do usually get there in the end.

    It must be very hard for you as your children are quite young.  Could the 10 year old help out a little bit maybe.  My daughter helps out but she is 15.  I do hope you feel better, its an awful feeling.  I cried every day for a year before I finally went on medication.  It does make me stronger to battle on to get some help. Maybe consider speaking to your doctor.  Take care. Xxxx

  • I don’t know what it is like where you live but over here we have early help which can get you support. I am currently on the waiting list for a support worker. Also there is a corse called triple p which is a bit like a parent corse but not as such, it is designed for parents of children with disability’s to help us understand the behaviours better and give us advice on new tactics, I start this corse at the end of April. I can’t wait because I feel at my wits end haha. 

    I think my daughter has ADHD as well but they won’t look at that until she is 7 because apparently the autism and ADHD symptoms are to similar to look at adhd as well now she has the autism diagnosis. It is a never ending spiral to be fair. 

    I felt that as soon as she was diagnosed that was it, I had to push and push for support it took me 11months!! Which is a bit poop :( 

    i hope you manage to sort some support. There is a group as well for siblings of autistic children which is really good, that’s well worth enquiring about. If you google things in your area I’m sure loads will come up.

    stay strong xx

  • My son is also getting referred to the ADHD pathway when he’s 5 as they won’t take them til then his paediatrician has said. I always thought with the ASD diagnosis it would open many doors and there would be help but unfortunately I learned this was not the case. 

  • Do you have a child with ASD?

  • Hi Rainbow.

    i do understand I am not the only one in this situation and there is millions of parents and carers that are going through the same thing everyday but as you said it is a very isolated and lonely place to be. 

    I have friends and family yet none of them offer any support. I have tried anti depressants in the past but I have never felt as bad as I feel now. I think I need a trip to the doctors. Hopefully it will pass.

    thsnk you for your advice x

  • Aww thank you so much for your kind words. 

    Yes it’s just very frustrating. As you described you feel like you don’t spend enough time with your other children as they are either sucking the life out of you or taking up all your time and attention and this I feel guilty for. It keeps me awake at night I think oh I don’t spend enough time with so and so today or I don’t think I played with the baby enough or did I tell my kids enough that I love them today. I just feel like a useless mother.

    i avoid going out public places as much as i can as when things trigger and it all becomes too much sensory overload there is no stopping him. People stare, whisper, shake their head or just think you can’t cope. They judge without knowing that he’s got a disability even though it’s not a visable disability. Thank god we have a garden ha ha. 

    I am wondering whether to contact social services myself to see if they can provide some sort of help and support

    xxx

  • Hi Kayleigh.  Im new to this forum also.  I know exactly how you feel. My son is 9 and has Autism, ADHD, OCD and Anxiety.  Life is not easy.  I am always tired and mentally drained too.  I went on anti depressants over a year ago and i feel much better.  Would you consider this.  I didnt want to do it but I hit rock bottom and had no choice.  However I do have a better quality of life being on them. Its not just you that feels the way you do.  You are the same as millions of us out there.  I know it doesnt feel like it at times though.  It can feel very lonely. X

  • I also feel very down and depressed at the workplace.

    I simply put a mask. I am simply formal there and do the absolute minimum.

    I can say that I do not have work-life balance.

    Its so bad and extreme sometimes that I feel like I can’t carry on and do this anymore. It’s so draining and I just don’t feel like I have any sort of life.

    So, you are not alone!

    I suffer every day. My health keeps going down because of this.

    I feel mentally and physically drained and I don’t have anybody else to help me.

  • Hi, my daughter is 4, almost 5, and I feel just as you describe! I feel zero energy, I feel like she sucks my energy away and I have no time for my other kids because when I try she goes mental. I feel mentally and physically drained and I don’t have anybody else to help me. 

    I can say one thing though some days are easier than others, and usually it is a trigger that sets us off on bad Days/weeks. For example she was doing really well for about 3mpnths until she was told by a social worker her dad wants to see her again (this was 5weeka ago) and still she is disruptive and can see a massive change I. Her behaviour!

    i think as life goes on you will notice the triggers and be able to avoid them but as our children are still young we may have a few years of never ending battles ahead haha! 

    Sendingg you hugs and healing wishes hun!

    xx