Parents of ASD kids

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This topic contains 14 replies, has 8 voices, and was last updated by  Sherima 2 months, 3 weeks ago.

Viewing 15 posts - 1 through 15 (of 15 total)
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  • #25088 Report

    GirlWithTheMostCake
    Participant

    Hi,

    Just wondering if there were any others whose kids have ASD here? Anyone in a similar situation to me cos I could really do with someone who “gets” how hard it is and doesn’t patronise me?

    My son is 8 and in mainstream school but, aside from school we have no support. My friends turned their backs when he was diagnosed and what little family I have want nothing to do with me. Would love to chat to parents in similar situations cos I’m struggling.

    #25093 Report

    Kathymumofone
    Participant

    Asd is very tiring to deal with and needs endless patience.  What’s the worst bit at the moment?

    #25094 Report

    Liane
    Participant

    I’ve never heard of ASD.

    My cousins had ADD and ADHD which is Attention Defect Disorder and Attention Defect Disorder with Hyperactiviness but they grew up with my Grandparents because there parents had Alcohol Misuse and Mental Health issues.

    Could you explain what it is?

    Is your son taking any medication for it and have you ever taken him to a child psychologist?

    At 8 his in his first year as a junior and probably experiencing an array of mixed hormones. Maybe someone from you CMHT, community mental health team, would be able to suggest groups and coping strategies to help him and you.

    #25100 Report

    GirlWithTheMostCake
    Participant

    Liane – Autistic Spectrum Disorder…AUTISM. As I explained, we get NO help. No medication, no psychologist, no CMHT. He has autism, we go to CAMHS and they give us leaflets to a clique pretending to be a charity…if you don’t fit in, they won’t help. That’s all there is.

    Kathymumofone – so, so many things!! His dad teaches him inappropriate words and encourages him to laugh and repeat them (to the point his SENCO made a social story to try and help stop it) threats of violence, lashing out and, lately, running off…this has only started since I had my operation for osteoarthritis and he knows I can’t chase him. A few weeks after my operation he ran off in the middle of town and went all the way to the museum (luckily no roads to cross) I was limping after him, walking stick in hand, shouting people to stop him but no one would help me. He tried running away at a zoo we went to in a town we don’t know during the holidays and today I stopped to chat to a classmate’s family outside school for 2 minutes and he ran off and climbed a bridge over a duel carriageway cos he was “bored”. I don’t have endless patience. I’m tired and broken. I started self harming again in order to manage my feelings, it’s literally the only way I can cope.

    #25102 Report

    Blossom
    Participant

    Hello. Sorry to hear your struggling, it must feel very isolating to have a child with additional needs especially when your doing all by yourself. I work in mental health and meet no end of parents exhausted by the lack of support for children like your son. All I can say is keep banging on those doors until someone helps (exhausting it itself) Be proud of yourself though I’m sure you are doing an amazing job.

    #25110 Report

    Sherima
    Participant

    My little girl is autistic and it was a struggle as I had no one to turn to so I kept all my appointment s with spEach and language and held down a difficult job. So we are still waiting for NHS diagnosis although she’s one. I went and got private diagnosis and once I got that report and evidence it opened many doors for us.  My daughter is saying a few words now and understands what the toilet is for . I brought her up on my own and she attends a specialist school.. you need an EHCP in place if you don’t . I suggest speaking to someone at the children disability centre at your local council . Our case worker is brilliant and the nursery helped us and that helped too in  securing a school that will your son

     

    #25112 Report

    Sherima
    Participant

    Good luck and it sounds really exhausting especially as you have had an.operation.

    I suggest you ask some one from the disability centre  to a home visit as there are bursaries you are entitled to.

    I received an activity grant and Easter when I had no  hadone andto look after my girl    I was awarded some money to pay for childcare

     

    #25114 Report

    GirlWithTheMostCake
    Participant

    Sherima – my son attends mainstream school and myself and the SENCO want it to remain so. He has always been very chatty, astounding at the Natural History Museum that he could pronounce dinosaur names aged two and a half. He doesn’t get an EHCP cos he’s verbal and active. As far as I’m aware we have no “Disability Centre”, the council do nothing and, as I said, CAMHS only give out leaflets to this one organisation that are a massive clique…we went to their weekend group but were told we had to leave as my son was “difficult” – he wouldn’t sit quietly and play on a tablet cos he had been promised soft play but the play workers couldn’t be bothered. None of the other parents even spoke to me cos I wasn’t part of their established gang.

    #25115 Report

    GirlWithTheMostCake
    Participant

    Blossom- there are no doors. All I have is the SENCO and other lovely teachers at school. I’m so tired.

    #25130 Report

    Sherima
    Participant

    Where do you live because all councils have a service for children with disabled and complex needs . There is IAS service which means there is one in every local authority. They help with DLA and complete of forms . I did it on my own but there are case workers

    #25138 Report

    Hi GirlWithTheMostCake

    I am pleased you have posted on our forum and its great to see the other users chatting with you.  I hope you will find ir of some comfort.  I will be sending you a personal message with some signposting options for some of the issues you have discussed.

    Take care, Justine

    #25349 Report

    14Fi
    Participant

    Sending you a big hug! You are not alone, unfortunately, one of many struggling without support. If your child needs more looking after than a ” normal” child his age, you can claim DLA, This also makes you eligible for carers allowance if working full time is too exhausting. I imagine you get very interuppted broken sleep. Cahms can provide melatonin for your child. An oil diffuser with oils such as lavender can help too.  There is an organisation called the children’s sleep charity that has good info. You may also be able to get a blue badge for him, the new guidelines should be in place end of August . Your council should provide access to short breaks or respite if you need it. You are also legally entitled to a parent carers assessment of need, although lots of carers are being denied this. I would push for an EHCP. It is not unusual for autistic kids to really struggle once they hit secondary school. This document means your child will be legally entitled to the support specified.  I have found it useful to keep control of my son’s favourite motivators to get some degree of compliance over safety, personal hygiene etc. I also like the principles of NVR, and therapeutic parenting .

    Self care is so important to be able to keep going. It takes time and energy to build a support network, and prioritise looking after yourself, but this is what enables us to carry on.

    You may be able to access a holiday  from the family fund. There are lots of charities out there, that might be able to help.  Never forget you are amazing! You can do this!

    #25350 Report

    Sherima
    Participant

    I know there are a lot of children who are autistic and are in mainstream school and have EHCP plan in place . The extra money comes In handy to.pay nanny when I am at work during the school holidays .

     

    #25833 Report

    TG1830
    Participant

    Hi <span style=”color: #1a1919; font-family: Lato, sans-serif; -webkit-tap-highlight-color: rgba(0, 0, 0, 0); -webkit-text-size-adjust: auto; background-color: #fbfbfb;”>GirlWithTheMostCake</span>

    This is the first time I’ve ever posted on a forum but needed like you to see if any other single parents are struggling with an ASD child. I’m not that great at advice as it’s all quite new to me but can see you’ve had lots of advice and support from other parents. My son is 5 and it can get so lonely and his behaviour can be really challenging. Hope it helps knowing you are not alone. Sending you hugs.

    #25847 Report

    Sherima
    Participant

    We had an  action packed week and I was able  to go to work for 2 days. We managed to get away for a couple of days to the coast.with my sister s family . Today my lo had a swimming class and I forgot to pack her buggy in the car as  we got home late last night.

    At the moment I’m trying to get my 5 year old to walk but she won’t and she throws  her herself on the floor or pulls on me  & drags which has  affected my arthritis . Shes reliant on the the buggy! It’s  worse going up upstairs..i am still waiting on NHS diagnosis but paid privately for tests etc.. our nanny has gone abroad for 8 weeks today  and I will miss her.

    Trying to stay positive .  the garden is relaxing and ive planted 50  sunflower seeds  .today we chilled there with fanta and magnum ice cream.

     

     

     

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