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its been two years but still finding it hard

jrandall10

Hello everyone.

Our seven year old daughter has sensory processing disorder and mild asd. She is holds it all together in school so when we try to get help from the professionals, doors are closed all the time. I really want to help her but everything I've tried makes no difference. At the start we we're very visual with everything but she wasn't bothered. We have tried treating her normally but her behaviour is not good as she needs daily therapy for her SPD. She will occasionally hit, have bad attitude and struggles to fall asleep. She gets really bad anxiety and makes herself poorly with it at times. As its currently the holiday season, she has really struggled and I feel so lost. She asks to do stuff which i know sets her off but I don't know if we should stop her doing it. I can't make her u understand that doing these things will upset her. She has lots of therapy tools but I struggle to keep her using them or make her understand they will help her. She asked for toys for Christmas but she struggles to play and if we try to play with her she looses it. It's like she wants to collect these things to know they are there. She has a reward chart but isn't bothered. I just want to help her but feel lost xxx

  • Thank you hun. I think we r going to pay for a private OT xx

  • Believe me, I do understand, but I just want you to know that with the right support and often an a slight adjustment of mindset things can get better.

    Meltdowns may aways be a part of her life, but the degree and frequency of such meltdowns can alter and this in turn can make life more bearable.

    Keep your spirits up and know that their are people here that do understand.

    All the best

    Coogybear.

  • Thx Coogybear for your reply. I try my hardest to not upset myself over stuff to do with our daughter but the heartache of seeing her struggle is horrible. We treat her as normal as we can but then find that she gets effected by this cause she can't handle it. I just feel lost sometimes xxx

  • Hi jrandall10,

      No one can deny, things get pretty tough when you are supporting someone on the spectrum. Please, be a little kinder to yourself. You sound like you are doing your very best and really thats all we should ask of ourselves.

    I have two boys diagnosed on the spectrum with ASD, Severe Dyslexia, S&L difficulties, co-ordination problems, the list goes on. Therapy is only one part of their life, but when things seem so overwhelming it becomes easy to be blinded by their difficulties and not see their strengths.

    In a world where the emphasis is on what's not NT about your child, it becomes easy to see things negatively only, but things can become more managable, especially if you view things holistically.

    Therapy is important; don't get me wrong, but it's not everything. Happiness and well-being is a key factor also, but the experts don't discuss this as much. For a long time the emphasis has been about fixing whats wrong and not making things managable for those with ASD and associated difficulties.

    One of my sons is crippled with severe leg/knee/hip pains when he walks just a few yards and consequently he hardly goes out, other than to College. His hip pops out almost every other step and he's forever falling over or into something. He's spent years confined to his bedroom absorbed in his ASD persuits and often too fearful to go out for the pain.

    Yesterday he decided to go on a rare visit to see one of his two friends. He was out from 11am-7pm and despite leaving the house with a shed load of tissue salts, pain killers and support garments, he came back absolutely rolling in pain, but was so delighted with his achievements that the level of pain became secondary to his joy at his achievement. Today he's in agony, but deems his attempts worth it. It's my guess that he will try this way more times before he realizes the thresshold of time vs pain managability and adjusts his behavior acordingly, but for now he's giddy with achievement and really he's just trying to do what others his age do.

    Against all my motherly instincts to prevent him from over-doing it and suffering the painful consequences, he did what he wanted and it made him very happy. I guess what I'm trying to say is that we as parents are here to enable. To guide and to foster all that we can from our children and although you are aware your daughter may become overwhelmed by her toys, you cannot prevent her from getting frustrated by them, just be their for her when she does or guide her to a more pleasurable experience if things get a little fraught.

    In some instances ASD youngsters learn and realize after many failed attempts at certain persuits, that it causes them pain or frustration. They often need way more time than others to assimulate such experiences, but like all of us, they have to experience them to know.

    It may seem now that little progress is made by your daughters therapy, but in my experience the progress is often so slow as to seem stationary. I know this is not always an option, but have you considered private therapy?

    I too, struggled with my sons therapy regime, yet having an outside weekly therapist to visit helped me keep things on track a little more and to be honest it was good to share the therapy experience with a professional who could not only reassure us that we were doing things right, but also look at slight variations to lift the angst of often repetative tasks.

    Keep going hun, you are not alone. 

    In thinking of well being, remember your own also. It's hard to help others when we don't give ourselves enough time. Take Care. 

    Coogybear.