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+--- Thread: Seeking resources for my adult daughter (/thread-3823.html)
Seeking resources for my adult daughter - NancyB - 07-25-2017
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.
RE: Seeking resources for my adult daughter - Dani - 08-11-2017
Hi Nancy, welcome to SPD Support.
I have been meaning to reply to this for quite some time. Sorry I got here so late.
Your daughter reminds me quite a bit of myself. I also have significant SPD, anxiety, and OCD issues and get overwhelmed quite easily. I also found myself in a very similar situation after graduating high school. I had no sense of self worth at the time and didn't even apply to any college programs or universities. After high school, I found the few people I did associate with in high school were moving away, and I had no easy way of remaining in contact with them. Suddenly, I found myself an adult who didn't feel capable of leaving the house and who was becoming more and more isolated from the outside world.
I had my family though. My parents and my siblings (though only my younger brother was still at home at the time). I soon relied on them for all of my social interaction. Now, say my issues weren't as severe or that having older siblings had helped motivate me or something, but I had done a few things after high school to keep myself out in the world. I did go to a community college (otherwise I wouldn't have even had health insurance), though my mom was my ride for the first year. I did get a job; and a terrible, extremely stressful job it was for me to be working at a grocery store! I still have nightmares of the place!
I even managed to learn to drive. It wasn't easy, I'll tell you that. The first time I ever drove, my dad was trying to explain things to me the entire time we were driving. I came to my first corner and wanted to know a simple question from him: do I just turn the wheel once and hit the gas, or do I have to keep turning the wheel as I drive around the corner? Before he could answer, a truck pulled up behind us. Now I felt like I was holding up traffic. I immediately hit the gas and did not turn the wheel after doing so. We ended up driving straight off the road, stopping a few feet from hitting a tree. Needless to say, it was a while before I got the nerve to drive again, hehe. (The answer, for those who wanted to know, is yes, do continue to turn the wheel while you're turning.)
Back to my social life, though. Well, I was able to get to work and to classes, but that was really just about it. As time went on, I found myself less and less motivated to keep doing these things. I felt myself shutting down more and more. I had hoped at this point I would be blossoming and turning a new leaf, but instead, I found myself lost and not sure what to do. I was used to grade school, where I was given directions on what to do next or where to go. Figuring these things out for myself was terrifying, and my sensory issues and anxiety got in the way every time the opportunity to 'go out and be social with peers' came up.
What turned things around for me was when I got desperate, wanting to improve my situation and figure out how I could possibly have a better life. After some internet searching, I stumbled upon Sensory Processing Disorder and was blown away by what I was reading. It seemed to be speaking directly to me. It seemed to know all the issues I would be having before I even had them, listing the ones I had already had up to that point. It fit like a glove.
I soon had to know as much as I could about it. I picked up books from the library and read everything I could online. I even pushed myself (anxious about it though I was), to be active on an internet forum for the first real time when I joined a Yahoo group. It's still out there. In fact, I run it now, hah. SPD Adult SHARE.
It really helped me out immensely to just see what other people were writing and had to say, and even more so when I started to communicate with them, myself. I soon got into occupational therapy, and have had a ton of help since then. My life has improved in many, many ways. I graduated from college, started up a career in computer programming, and have an active social life. I live on my own and drive when I need to get places.
I believe your daughter can get there too. I have hope, for sure. Now, I don't know where the most active communities are for SPD these days, but I'm sure they are out there. Unfortunately, it may require venturing to places that are a bit more oriented around Aspergers syndrome or something, especially since those communities are usually a bit busier, and most everyone on the spectrum has SPD as part of their difficulties. I know, not my first choice either, but if it's where people are, it might be a good start.
So yes, my advice is to research, learn as much as you can (you and your daughter), find an occupational therapist, and find some online support communities. I just wish I was involved enough in the scene these days to point you in the direction of the best ones.
Thanks for posting!