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I think we've been forgotten about

misskittykat

As part of my daughters ASD assessment, we had some appointments with the OT - last time I heard from her was February when she said she'd get in touch soon to make a follow up appointment.  Tbh, she was struggling with my daughters sensory issues which are extreme.

We also had an appointment back in January with the SENS inclusion lady that specialises in sensory issues in school.  As far as I'm aware, there was going to be some discussion between the two of them to decide who was going to take my daughters issues forward but I've heard nothing from either.  

From my point of view, neither can do much to help.  Its nice to talk to someone but they can't make my daughter do what needs to be done as she has to be ready to do these things herself (go to school, wear a bra and sanitary protection etc) so is there any point in chasing them?  

What sort of input did you have regarding sensory issues once diagnosed?

  • She can get away with not wearing a bra at the moment but its fairly noticeable when she's only wearing a t-shirt and starts jumping up and down in excitement.  I've got some really nice soft seamfree ones, both tight and loose but they just sit in her draw.  I also battle with getting her to go out without smothering herself in a hoody (she hates her arms which are quite hairy) and she's only got two pairs of trousers that she will wear.  Noise and light out and about are also an issue so I try to find places to go where she can be outside in natural light.

    The lack of services in this country is disgusting and getting worse.  My neighbour (in her early 40's) had a stroke 6 months ago and can't get any help because the services she needs have all been cut.

  • Yeah, I can relate. I am actually thinking of getting myself an MP3 player and headphones for when I go outside on my own, to help me block out the noise. I am a technophobe (apart from the Computer!), and don't really own many gadgets. But I do think headphones and a music player would help me. I enjoy listening to classical music - it calms me, and think that this would help my anxiety when out and about.

    Do you or your sons listen to music when out and about?

  • Hi Hope,

     I so know where you are coming from with regards to the noise sensory issue, both myself and my brother suffer terribly with it, as well as my sons. One of my boys is the lad that wears ear defenders when in overload. He also uses headphones to overide extrenuous noise in a room, however this is not always helpful as you normally have to touch him to get his attention and that can be equally as alarming for him. I jump out of my skin when both the phone and doorbell go. So much so, that i've disconnected my doorbell because it's pitch is too alarming for me. Not ideal either.  I've heard others say that they have used their own noise to drown out the affects of total quiet, but i'm not sure how effective that is. I know at night i'm aware of every creek in the house, but then my sons keep me up most nights anyway.

    My hearing is so sensitive that i can hear cars approaching from miles away at night. :(

  • Regarding bras, does your daughter have to wear one at all? I stopped wearing a bra as a late teen - I only wore one in the first place because I wanted to fit in, but bras can be tight, hot and sweaty. Not all women really need to wear one, unless they have very big breasts. So your daughter might not need to worry about wearing a bra.

  • I am an adult and could do with some support input on how to deal with my sensory difficulties with regard to noise, the one sensory problem that I really struggle with, but the mental health team just say, 'it is part of your Asperger's, you are just more sensitive'. No help at all!

  • Hi MissKittyCat,

     My boys had little in the way of actual support or strategies to help with their sensory issues, only mention of 'time out' and small classes in the School environment when sensory overload was observed or sensory sensitivity was to be managed. This sort of thing is helpful for statements etc, but often does little for the everyday management of their condition in my experience.

    It was left very much to me to manage their sensory sensitivity myself. From earmuffs whist hoovering and wrap around glasses for migraines caused by extreme light sensitivity to food texture sensitivity, label cutting and wash regimes that limited the extent of the total meltdowns in the morning. It was all very hit and miss really. You may already be using many of these strategies yourself and truely the most useful input will probably be your own, in that you know your daughter the best and will probably be more aware than most what can act as a trigger or how to manage her sensitivity.

    Have you tried consulting another OT for a second opinion? Sorry I cannot offer anything a little more helpful, but truly you really are the most knowledgable about your daughter.

    On a more proactive note i've often seen posts on here asking about specific sensory issues and how to manage them. I'm sure many in the commuinty forum will put forward ideas if you would like more specific strategies put forward. I wish i'd had this option when my boys were young. I felt terribly alone with it all,

    Regards

    Coogybear