My daughter has ASD and I'm so lost and need help — Scope | Disability forum
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My daughter has ASD and I'm so lost and need help

Danibean
Danibean Member Posts: 2 Listener
edited November 5 in Autism and neurodiversity
Hello, I'm new and I don't know were to start! My daughter (nearly 4) has recently been diagnosed with ASD which we expected but it's really hit me and my partner hard. Knowing that she may or may not improve. I can't take her out without a pushchair as she refuses to walk. Even with safety reins she is just everywhere and I cannot control her. I feel like I'm restricting her by putting her in a pram but she will either not walk and have a melt down or be completely out of control. I'm lost on what to do! I've tried everything I can think off. Playing games, trying to make it fun and interesting but she is just getting worse. I just really need some advice or something. I have Bpd and ptsd and struggle to go outside alone and it sounds awful but this makes me feel panicked and extremely anxious. I try to take her out at least once a day but it's getting so hard. Sorry for the long rant. Any advice would be amazing :) thank you
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Comments

  • Teddybear12
    Teddybear12 Member Posts: 1,267 Pioneering
    edited November 4
    Hi @Danibean I am sorry you are having such a difficult time. My next door neighbour's grandson has Autism and went school in a push chair when he was five because he would not walk and it was not worth the melt down to get him there. She also took two other grandchildren slightly older to school they walked. After about eight weeks one day he decided to walk and she has had no problem with him walking since. Children do copy. Do you walk the same walk everyday so she knows where she is going. Perhaps take her to the park where she can run around when you get there. Do you keep away from crowds as this could frighten her. It sounds as if you have tried lots of different things. Does she go to nursery? You can rant as much as you like it sometimes helps to talk about things. It does not sound awful that it makes you feel panicky and anxious you are being honest. I hope the Community is able to support you. Take care.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,997 Disability Gamechanger
    Hi @Danibean - & welcome to the community. The only thing I can add to the insightful response above, is to mention that Scope have some support services that you may find helpful. Please see: https://www.scope.org.uk/family-services/    'Navigate' in particular may be helpful, but please look at the others.
    I think it's very difficult not knowing what you're child's future may be, but know at this time you're doing the very best that you can despite you're own problems, &, as a parent, you need support too.
    As teddybear12 says, just rant here any time.....you're among parents who have some understanding. :)
  • Danibean
    Danibean Member Posts: 2 Listener
    Thank you so much for your responses! I think you might be right about the crowds and the sounds, I'm going to try ear muffs and see if that helps. I usually go the same routes and noticed she does get more upset if I take a new route. I might try a compression vest too and see how that goes. She's at nursery and seems to cope OK there but they have a very strict routine which I think helps her. Maybe I need to prepare her more for going out. Thank you both for being understanding, I will look at the family services link, thank you :) it's nice to know I'm not alone. I think it's so easy to isolate yourself in tough times. I'm so glad I messaged on here ☺ 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,997 Disability Gamechanger
    You're certainly not alone @Danibean - I'm pleased Teddybear12 has given you some ideas to try & that you will have a look at the family services link. This is a very supportive community, & I'm pleased you've joined us all. :)
  • Danip
    Danip Member Posts: 5 Listener
    Hi @Danibean, I'm sorry this is a stressful time for you. Remember to take care of yourself as a priority, I know, as a mum myself, that it's easier said than done but we need to think about ourselves. Talk to your GP about the bpd and the ptsd and, if it makes sense for you, talk to a counsellor. You will be in better shape for yourself and for your family. This is one of the things that helped me the most. About your daughter, she is so young, be patient with her and kind to yourself, if the pram is the solution now let it be. Independently of the ASD this is an age that they develop quickly, physically and socially. Just keep offering, encouraging her to do short walks in a time of the day that she is more energetic (perhaps not after nursery). Try a short walk to the supermarket or the convenience store to buy a bar of chocolate, a cupcake or some kids magazine, something she loves. It doesn't need to be every day. Take care.

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