I am writing on behalf of my 23 year old daughter who lives with me and deals with anxiety, OCD and sensory issues. She was born very prematurely (27 weeks, 1.5 lbs) and has dealt with numerous issues since birth (fine motor and gross motor difficulties, hypoglycemia, multiple food intolerances, very early puberty--age 10 supposedly common among preemies--in addition to her sensory and anxiety issues). She received early intervention through age 3 and OT until age 5 but in public school they did not feel the OT was still necessary. At age 14 she had a full private neuropsychological evaluation which revealed SPD as her main disability. She was not open to OT at that time because she had had very negative experiences with professionals whom she felt did not understand her and she did not want to try “one more therapy.”

She was not able to attend college though accepted into a program she was very interested in and is currently very isolated at home with me. She has not interacted to any significant degree with peers since high school. She is is mostly homebound (home and immediate community around our house) because of her sensory issues and anxiety (even a trip to the supermarket is a sensory overload experience and she only goes in to buy one or 2 items at a time). She does not drive so relies on me for transportation. She wants to learn but I have discouraged it because of all her issues. I’m interested in anyone’s thoughts on driving for someone with this level of SPD. I’ve suggested she learn from a driving instructor but she says it would be too overwhelming to have the instructor talk while she was driving because if she had to listen to him/her, she could not focus on the driving. Another example of this sort of thing is that she “needs” to eat in complete silence. She says she cannot taste her food if people are talking. When there are people talking at once, such as when people visit, she shuts down and becomes extremely stressed afterwards. She has “learned” to control her environment by imposing “rules” as to what can and what cannot happen as much as others will tolerate. Because she and I currently live together and she hangs out in the main living area of the house so as not to be alone, this has becomes a difficult situation for me because I either have to abide by her rules or deal with a lot of stress and overload on her part. Her younger sister just graduated from high school and used to live with us half time but was rarely home because of her very busy schedule. She was a lot less tolerant of her sister's “rules” so she stayed away in her room or out of the house most of the time except for meals which she ate with me. It really concerns me because it is obvious that living in the world is a huge challenge for my older daughter. She says that she wants to find ways to “go out into the world” for short periods of time and then “collapse and de stress" when she gets home. The difficult part for me is that she has come to rely on me to be her “comfort and de stressor and companion” and has made no connections in the world in the past 3-4 years because of her challenges.

I recently suggested to her that we seek out support for her SPD. She is very shy but is willing to have me seek out resources and relay them to her. She feels it would be helpful to find others who deal with her issues which is why I am posting on this forum. Any suggestions for finding connections or resources greatly appreciated. Thanks.