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Lane with a more in-depth introduction - LaneSensorina - 04-21-2011
My introduction was not complete. I am Lane. I am 51 years old. Sensory processing disorder has affected every aspect of my life. Until I read the specifics I just thought I was weird and neurotic. I also figured I inhereted aspects of this weirdness from my mother and passed aspects of it to my two sons. I didn't know if it was nature or nurture or some mix of them both. My husband has aspects of this disorder as well, although he seems to cope better than I do. None of us - husband, self, sons - ever adapted to school. Actually, my husband dropped out of high school. My sons and I all graduated early because we couldn't stand it. One son and I tried our hand at college but again, couldn't stand it. Yet all four of us are very intellegent and learn complex things on our own. My husband is a successful technology consultant (his clients would be very surprised to find out he is a hs dropout). I became self employed within three years of leaving school. I sold my business after 25 years. I loved running a business, loved making money in an environment I got to control.
I'm sort of retired now. I spend most of my time at home with my dog and my cat (although if I touch the cat I have to immediately wash my hands or my skin begins to crawl and I have to take a shower). Being out in the world is exhausting. I hate that TV and radio are broadcast in so many envirnments these days. Shopping is bad enough. I started carrying earplugs with me everywhere I go. I wear a hat and dark glasses.
My friends could never unstand why I don't hang out with them in restaurants. I love picnics. I love to be outside amoung trees in quiet places. If I agree to meet someone at a restaurant it has to be for no more than an hour. Some places I just have to leave as soon as I get there.
I go to movies but only the earliest matinee on Sunday or a weekday. I learned long ago I can't sit through most movies. They overwhelm me.
I was never diagnosed with anything except anxiety and depression. That was by the first psychiatrist I ever went to - in my forties! I went specifically looking for medication because it was getting worse. I had tried every self-help and spiritual option. Appearantly you can't self-help your way out of SPD. Whenever I tried to tell a doctor about these weird things they just looked at me like I was crazy. They even saw evidence of it in their offices and never responded or questioned or gave any comfort or explaination. I think I learned at an early age to hide my symptoms, to avoid places and situations (school, work, resteraunts, stores,) where I had no control of my environment.
I am curious to know if anyone else here found out about their own SPD at an advanced age. What was the process of learning about the disorder like? What has changed in your life as a result of finding a name for what was wrong?
RE: Lane with a more in-depth introduction - Sila - 04-21-2011
Well, I'm 19 so I dont know if you'd consider that an advanced age. But I first found out about it from a friend, and started to research it immediately. I think that I've become more aware of things now, but I'm also more aware on how to keep from getting overwhelmed now too. I notice things back from when I was a kid, that I had shrugged off back then and thought I was just weird.
RE: Lane with a more in-depth introduction - LaneSensorina - 04-21-2011
Thanks for responding, Sila. I wouldn't consider 19 an "advanced" age but an adult non-the-less. How old were you when you first learned about it from your friend? Is your friend a "sensational" person as well?
RE: Lane with a more in-depth introduction - beck7422 - 04-22-2011
I found out about SPD as an adult in my late 20's. I was trying to find a solution to my light sensitivity problem. I learned that Autistics often have light sensitivity problems like mine. So I contacted some Autistics on-line. They directed me to Sensory Integration Dysfunction (what SPD used to be called). It was also from those with Autism that I learned about Irlen Lenses to manage my light sensitivity problems.
I had mild to moderate, but manageable, SPD as a child. I figured out all sorts of ways to function around my quirks. My whole family is quirky so functioning around the quirks was considered the norm. However, when my Hypokalemic Periodic Paralysis got out of control in College, my SPD went from an inconvenience to a major problem. At the same time my Food Allergies also became blatantly obvious (had them from childhood, but thought my allergic reaction after eating was "normal") and much worse. It wasn't until a few years after College that I was able to first get Hypokalemic Periodic Paralysis, then Food Allergies, and then SPD diagnosed. Each was making the other worse.
Getting the Food Allergies under control, let me get the Hypokalemic Periodic Paralysis under better control, which allowed me to better manage the SPD. Additionally, getting my light sensitivity problems under control with the Irlen glasses REALLY helped lower the number of Hypokalemic Periodic Paralysis attacks I was having every day. Without the Irlen glasses around 100 attacks of paralysis/weakness per day and with the Irlen glasses around 10-30 attacks of paralysis/weakness per day.
I haven't gone a day without a paralysis attack in many years. I define a paralysis attack is any muscle of my body being non-responsive to a comand to move. I usually realize that I am having a problem when I try to reach for something and realize that that is impossible or very difficult. It affects almost all muscles of my body, including muscles that assist my lungs in breathing.
Doctors and psychiatrists don't know what to do with me so I go through periods where I avoid them completely and other periods where I ask for help from them. Right now I am in an avoidance phase. Unfortunately, I need a doctor to sign off on my medications and paperwork for insurance companies.
Kind of difficult when all your doctors dumped you because they couldn't figure out how to help me at all.
RE: Lane with a more in-depth introduction - LaneSensorina - 04-23-2011
Very interesting. I had to look up Hypokalemic Periodic Paralysis and Irlen glasses. I had never heard of either before. I’m glad you got workable diagnoses and found modifications and treatments that help.
I completely understand the avoidance phase
I find the medical/industrial complex to be time consuming, expensive and frustrating - at best. I have a much better track record of correct diagnosis then they do. However I do feel compelled periodically to give them a chance to verify my diagnosis. As I have been wrong a couple of times I am lucky my GP trusts that I spend hours researching. When I tell her what I think is wrong, why and what I think she aught to do about it - she generally complies. I know I am extremely lucky in that arena.Doesn’t it totally suck when you tell a physician about a symptom and they blow you off because they have no answer? Like if they have no experience with it, it doesn’t exist.
I have often wondered about autism, especially Aspergers. I have qualified as “most likely Aspergers†with all the on line tests I have taken, but only in certain categories. But of course anyone with SPD would have to wonder if they were autistic, as the sensory difficulties are the most “problematic†symptoms autistics suffer (I read that somewhere just recently).
RE: Lane with a more in-depth introduction - beck7422 - 04-23-2011
I am definitely not Autistic. I have taken the Neuropsychological tests that help identify it and I don't even come close. I am also extremely friendly and enjoy meeting large groups of strangers as often as possible. Strange with SPD, but my sound problems with SPD are all at the High C range so as long as there isn't a woman with an extremely high pitched voice or child screaming that note, I am usually fine at parties. (exceptions Light sensitivity + Camera Flashes and Food Allergies)
One of the problems of having the paralysis, sensory problems, and food allergies is I thought they were all one problem. It wasn't until I was able to break apart the problems and really define the lines that I was able to figure them out enough to manage them. The food allergies were first figured out by a doctor, but the other two I brought to doctors attention. Sadly, because I was the one to bring the Hypokalemic Periodic Paralysis up to the doctors they fought me on giving me that as a diagnosis. I have met many people with Hypokalemic Periodic Paralysis and they all have the same types of paralysis attacks as me to many of the same triggers. All the ones without a known mutation ALSO have SPD and lidocaine insensitivity. This group is large enough, over 30% of the Americans with Hypokalemic Periodic Paralysis, that the specialists are temporarily naming us HypoKPP-Plus.
The management techniques that I have learned from other SPD'ers I pass along to those with HypoKPP-Plus to help them manage their sensory problems.
RE: Lane with a more in-depth introduction - LynnNBoys - 04-23-2011
I learned about SPD because of my older son. He was diagnosed in 2008 when he was in 1st grade. He had been evaluated for autism and ADHD but those didn't exactly fit. It was when I made a connection between a book that I had edited (The Out-of-Sync Child Has Fun, rev. ed.) and the OT activities the therapist was doing with my son at school. I realized that the things in the book were the same things they were doing with my son for OT/motor breaks at school--and the therapies were working! So I started looking up Sensory Processing Disorder and found a checklist. I found myself answering Yes, Yes, Yes to everything on the list!
I'm 41 and it's just been in the last 9 months or so that I've been making the connection between myself and SPD. Some similarities between myself and my son (we're both very quiet, shy, and don't like attention on ourselves), as well as going back to that checklist and filling it out for myself. I had been diagnosed with depression and anxiety in 2005 after my second miscarriage, but I know I've been struggling with depression on and off since my later teen years. And who knows how much of that is actually sensory related. I feel much more comfortable in small groups of 2-3 people than I do in larger groups of people, even family. I get overwhelmed easily and that sometimes leads to panic attacks.
Welcome to the group!
RE: Lane with a more in-depth introduction - Sila - 04-24-2011
(04-21-2011, 07:07 PM)LaneSensorina Wrote: Thanks for responding, Sila. I wouldn't consider 19 an "advanced" age but an adult non-the-less. How old were you when you first learned about it from your friend? Is your friend a "sensational" person as well?
I just found out about it a few months ago, back around october/november. and yes, he is the owner of this site actually :3
I've recently been looking deeply into ASD, because of how well it fits my situation and how much it really explains why I have trouble with things- especially socially. Really, I don't need an official diagnosis to tell me that I'm autistic because I identify with it so well, but the official dx will help me get services in school that I so badly need.
RE: Lane with a more in-depth introduction - LaneSensorina - 04-26-2011
(04-23-2011, 06:53 PM)LynnNBoys Wrote: I had been diagnosed with depression and anxiety in 2005 after my second miscarriage, but I know I've been struggling with depression on and off since my later teen years. And who knows how much of that is actually sensory related.
I have struggled with depression most of my life as well. I didn't seek medical help for it until 2003. I think depression must be a common response to not feeling like you fit correctly in the world. I would love to see some studies on this.
(04-24-2011, 10:47 AM)Sila Wrote: I've recently been looking deeply into ASD, because of how well it fits my situation and how much it really explains why I have trouble with things- especially socially. Really, I don't need an official diagnosis to tell me that I'm autistic because I identify with it so well, but the official dx will help me get services in school that I so badly need.
If you have any websites or books that were especially helpful in your info quest about ASD I would love to hear about them. Thanks!
RE: Lane with a more in-depth introduction - pradamary - 04-28-2011
1. What brings you here? I have been dealing with sensory defensiveness my entire life
2. What is your relations to someone with SPD? Do you have it? Yes I do
3. Share a little of your journey if you'd like. I'm 59 years old have always had sensory defensiveness, can't stand bright light, loud noises, crowds, certain touch...the first time I took a shower as a child I felt like i was being pelted with needles, my mother thought I was being difficult, I hate things tight on my waist, I love cold rooms with heavy blankets I only recently realized this an actual phenomenon, as nearly everyone has just thought I was weird, a friend who works with children told me about sensory defensiveness a year or two ago, first time I've had a name for it. I startle easily, often startle myself.
4. Is there any immediate help you need? I would like help dealing with it. I take anti-depressants, and anti anxiety meds
5. SPD doesn't run your life! What are you or your child's gifts? Interests? I'm an RN, I was and continue to be a good student, a loving and empathetic mother and friend.
6. What do you like to do in your spare time? Any hobbies or interests? Garden, walk, cook, photograpy, skiing.