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Need advice/information regarding recommended treatments

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MarchViolets
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10 Nov 2007, 8:51 pm

I'm 18 years old, housebound (except with help from Guide Dogs for the Blind) due to sensory issues, and I'm a regular lurker here at wrongplanet. I'm afraid of posting, but I need some help.

I have recently (FINALLY!) had a specialist Occupational Therapist assess me. My problem now is that I have no idea what to do with her recommendations.

I am asking for any information regarding the following treatments (good or bad) that you may know of, as these are the treatments that have been recommended for me by the O.T:

Quote:
"A full audiometric assessment by an audiologist qualified in central auditory processing assessment."

What is this, what does it involve?

Quote:
"A full optometric assessment by a developmental optometrist."

Same info needed as above, if possible.

Quote:
"A full cranial sacral therapy assessment and subsequent intervention. (Name)'s birth history and subsequent difficulties suggests that she experienced birth stress (actually, my mum blacked out during parts of my birth, labour lasted for 3 days and looking back, she was subjected to deliberate neglect by hospital staff. When I was born I was so out of it I couldn't even eat, and my head was crushed). She may possibly be experiencing compression of the cranial base and fascial restriction which then impacts on the nerves, creating the sensory experiences she describes. "(etc)

Same as above, any info on what this therapy might do would be helpful, be it good or bad.

Quote:
"Sensory integration therapy.
(Name) requires the services of an occupational therapist qualified in sensory integrative therapy. This service should provide a sensory based intervention designed to help (name) to reduce her sensitivity, organize her behaviour, improve feedback about her body, help attach meaning to sensation, help her to move adequately and with confidence in space and to improve her receptive communication. Sensory experiences that are most organizing and productive are those which require active resistance, deep pressure and linear vestibular input. These need to be incorporated into (name)'s daily life to help her maintain a good level of arousal which may positively impact on her attention, memory and her emotions. She requires varied sensory experiences that require an adaptive response and which improve the sensory feedback from her body." (etc)

Any info on that would be helpful. Is it really wise to engage in a therapy that seems to have potential for such drastic internal changes?

I'm used to not knowing where my body is in space and not being able to cross roads, etc. Those sorts of problems are almost a part of being me. I'm worried about changing it around because of the impact that may then have on the things that I do enjoy, such as playing my violin. Are my fears justified?

Quote:
"The results of the Sensory Profile indicate that she becomes stressed by multi-sensory processing and that sensory systems then shut down. Until (name)'s system is able to manage, learning should occur through her preferred system and plenty of opportunity given to enable her to recover through the use of proprioceptive input, deep pressure and linear vestibular input. These need to be actively taught by an occupational therapist."

The above sounds like a good compromise. A way to cope with the way I function, but would this potentially change the way I function? What does "proprioceptive input" actually mean when we're talking about day to day living?

Quote:
"Therapeutic Listening/Samonas
These therapies use modulated and filtered music in conjunction with intervention based on principles of sensory processing intervention. They are considered to have a powerful effect on the auditory, visual and vestibular system and therefore may alleviate some of the difficulties experienced with arousal and impact positively on function and participation. It is also though to help regulation. Recent research suggests that therapeutic listening combined with a sensory diet helps those with sensory processing issues and visual motor impairment (Hall and Case Smith, 2007). This intervention would require the purchase of specialized head phones and CD's. She would complete the listening twice per day in the home environment for an initial period of up to six months. She would be monitored by a qualified person on a fortnightly basis for up to one hour per session."

I think that this is the therapy that scares me the most. The words "powerful effect" frighten me. This doesn't sound like something reversible if I was to decide that I actually preferred being the way I am now. I’ve learned to enjoy my own company and accept my problems (though my mental health does suffer). I am almost content living this way, do I really need to tamper with it?

Also mentioned in the report are "stress reduction methods, such as mindfulness. Occupations such as Hatha Yoga, Tai Chi or Feldenkrais". This is meant to be helpful because they create body awareness and calm the nervous system, organising feelings, thoughts and behaviours. Has anyone had any experience of this helping? Would body awareness really be a good thing for me, or does it stand a large chance of rocking an already fragile boat?

Thank you in advance for any feedback or help.



Last edited by MarchViolets on 11 Nov 2007, 12:49 pm, edited 1 time in total.

CrushedPentagon
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10 Nov 2007, 10:23 pm

I think this therapy sounds good. I've only had vision therapy, but I wish I could have therapy for other senses (touch). My problems are mild, however.

You have to realize that even if the therapies have a large effect on you, that it will not happen overnight. You will likely see gradual effects, so you can evaluate the changes as you go.

You already have a life, but you don't have much of a choice about how your life is. If you are able to make some sensory improvements, you will have more choices. You can still choose to be by yourself and stay at home a lot. Or you might decide that you like to go out and do some new things. You won't have to, but you would at least have the choice.

The therapies are designed to show your brain how to work the way it is supposed to. I suspect that your brain will prefer being used the way it was designed to.

I've done a lot of Tai Chi, and I would recommend it to anyone! It really is relaxing and helps me understand how to move my body and also how to follow instructions about moving my body.



SoccerFreak
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10 Nov 2007, 11:36 pm

i highly suggest that you get sensory therapy.

the OT usually does this.

you might also want to think about an MRI scan or CT scan.


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MarchViolets
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11 Nov 2007, 12:45 pm

Thank you for your responses. :)

Quote:
You have to realize that even if the therapies have a large effect on you, that it will not happen overnight. You will likely see gradual effects, so you can evaluate the changes as you go.

I realize that, but I'm afraid that if I dislike a slight change, I won't be able to undo it (slight changes can have big effects). I also imagine that I'll be told that I need to complete the therapy if I want to stop.

Quote:
You already have a life, but you don't have much of a choice about how your life is. If you are able to make some sensory improvements, you will have more choices. You can still choose to be by yourself and stay at home a lot. Or you might decide that you like to go out and do some new things. You won't have to, but you would at least have the choice.

This is a very good point, but the words "sensory improvement" assume that it will be an improvement? I keep reading stories of how musical children lose their musical gifts once they've completed sound therapy, or how people who enjoyed art could no longer draw once completing some other therapy, etc. My sensory problems are severe, but I'm concerned that perhaps they might be what causes any other abilities that I might have. I also hear/read that people who complete therapy 'successfully' lose 'their own little world', which I definitely don't want to happen.

Quote:
The therapies are designed to show your brain how to work the way it is supposed to. I suspect that your brain will prefer being used the way it was designed to.

I see where you're coming from, I'm just not sure that the way my brain was supposed to function is the most helpful way for it to function. Living like this is my 'normality' and I'm afraid to tamper with it.

Quote:
I've done a lot of Tai Chi, and I would recommend it to anyone! It really is relaxing and helps me understand how to move my body and also how to follow instructions about moving my body.

That does sound very useful. I think I'll look into that :D Thanks.

Quote:
you might also want to think about an MRI scan or CT scan.

May I ask why you suggested this? I've had at least one of those and the results came back as normal (they thought my sensory overload was epilepsy at the time).