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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?

Parents

  • 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

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  • 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

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