1. What brings you here? I am just learning about SPD, am looking for more information on it.

2. What is your relationship to someone with SPD? I believe that I have it.

3. Share a little of your journey if you'd like: My issues are mostly related to touch. Light touch makes me want to jump out of my skin--sometimes to the point of feeling very panicky. Cuddling with my husband is almost impossible for that reason. I do not like getting my hands dirty or sticky--same goes with my feet. I tend to wear socks and/or slippers because I don't like my bare feet touching floor that isn't carpeted. These are just a few examples of many. Looking back, I think that I have been dealing with this for a long time, but it has become increasingly hard for me to manage over the past year or so and it's starting to create some family stress.

4. Is there any immediate help you need? Yes--I need to find out where to go to get diagnosed and get some help. Do I need to see a psychiatrist? An OT? I'm not really sure where to start with this and am having trouble finding information on SPD in adults.

5. SPD doesn't run your life! What are your gifts? I think I'm a pretty great mom, I'm good at scrapbooking and I'm pretty musically inclined.

6. What do you like to do in your spare time? I love spending time with my 1 year old and my husband. I like scrapbooking, reading, camping, watching baseball and la crosse.

Oooooh, another scrapper! (high fives all around) I'm feeling in good company.

Ahem. Let me get back to things here. It's very nice to meet you! I, too, am an adult with SPD. I was just diagnosed in July 2010. So I know where you're coming from. You need to first make an appointment with an OT. I got a recommendation for a local OT from my nurse practitioner, but you can just call around and see what you find. You'll want to ask if they work with adults (many focus on children) and if they have someone who specializes in sensory issues. Once you are diagnosed, they will want to continue to have sessions with you so you can improve and learn a sensory diet. Basically, a sensory diet is a group of coping exercises you would do daily, several times a day, as well as some specific things to do if you are having situational difficulties.

As for information, yes, it is difficult to find ONE place that has all the info. I have yet to find one that gives everything you need, although there are quite a few good sites that give good info. This one is good because there are several experienced SPDer's and parents of SPD children who can answer specific questions. You might also get the book Too Loud, Too Bright, Too Fast, Too Tight for a good description of SPD for sensory defensive people (which it sounds as though you are) with the various senses and different options for you sensory diet.

It sounds as though you are tactile defensive (sense of touch). I am also tactile defensive, even though it is not my primary issue. With my husband, I have had to teach him that firm touch is the only way to go. I want to be tightly squeezed, I want him to massage me, and I find that, when I really crave touch, I am less sensitive in certain areas, namely the back area. If he touches me there for an extended period of time, I am more able to deal with touch elsewhere on my body afterward. That might make things a little easier for you. It would be worth experimenting to see where you are least defensive and start there when you want to cuddle. Also, make sure he knows that sneaking up or touching without letting you know first is a direct mood killer. You know what I mean. It took a while for my husband to figure this one out, but once he did, things are going much more smoothly now.

I'll definitely want to see some of your scrapping! Do you like traditional, digital, or hybrid?

If you have any other questions, let us know! And please let us know how the OT search goes.

Thanks so much for your response. I have a message into my primary doctor as insurance won't allow me to go directly to an OT.

Thanks for the suggestions on touch. This has been so difficult for my husband to deal with and understand--he thinks that it's something to do with my feelings toward him, and that isn't the case at all. I have tried to explain to him that I need a firm touch, but he thinks that if he does light touches enough, that I will get over it. That just doesn't work for me and I end up pushing him away completely. I will try to figure out where I am less defensive and start with that.

Thanks also for the recommendation on the book--it keeps popping up on different SPD websites and forums, so I think that I will order it today.

As far as the scrapbooking goes, I love traditional scrapbooking. I have made a few photo books through kodak and shutterfly, but only if I have gotten a really good deal on them--and I use them for gifts. They aren't as satisfying to me though--I really like putting the pages together myself. How about you? What kind of scrapbooking do you like?

Hello!

I am also an adult with SPD and one of my primary concerns is my tactile sensitivities. Light touching really bothers me, I get an automatic startle response on certain areas of my body (my back for sure). There are certain things I go out of my way to avoid (really random, but wooden popsicle sticks and pencils make the list).

I am also trying to find an OT right now, but haven't had a lot of luck.

Welcome to the forum

Jaimie

My back is one of my worst spots--particularly my lower back. And startle response is EXACTLY what I experience.

I am almost positive that there are things that I go out of my way to avoid, but I can't even think of one. I think it has become so ingrained in my everyday life, that I don't even realize it.

Definitely. And everyone has completely different areas that are more or less sensitive, so definitely experiment with it.

One thing that helped my husband understand that it wasn't about him was when I explained the current theory about how and why the startle happens. It's basically that, even though the senses are working correctly, the base of the brain takes what would be normal to others and classifies it as dangerous. Since everything goes through the base of the brain first before the "thinking" brain, there is NO way you can change the startle process by "trying," and keeping on doing it only makes it worse, not better. It's not something you can train yourself out of. And that has been a major issue for us, and while I do have to remind him of that from time to time, after six months, he's finally "getting" it.

As for other things you avoid, if you're like me, you've normalized them. The more you read and relate with others, the more you will uncover and realize. And if your evaluation was anything like mine, the questionnaires alone will be a huge eye-opener. And that's all to the good; you'll be able to cut yourself some more slack as time goes on. And if you have an idea that something might be part of it, feel free to ask around. There will probably be someone here who can relate.

(01-05-2011, 10:54 PM)mawkinberd Wrote: Definitely. And everyone has completely different areas that are more or less sensitive, so definitely experiment with it.

One thing that helped my husband understand that it wasn't about him was when I explained the current theory about how and why the startle happens. It's basically that, even though the senses are working correctly, the base of the brain takes what would be normal to others and classifies it as dangerous. Since everything goes through the base of the brain first before the "thinking" brain, there is NO way you can change the startle process by "trying," and keeping on doing it only makes it worse, not better. It's not something you can train yourself out of. And that has been a major issue for us, and while I do have to remind him of that from time to time, after six months, he's finally "getting" it.

As for other things you avoid, if you're like me, you've normalized them. The more you read and relate with others, the more you will uncover and realize. And if your evaluation was anything like mine, the questionnaires alone will be a huge eye-opener. And that's all to the good; you'll be able to cut yourself some more slack as time goes on. And if you have an idea that something might be part of it, feel free to ask around. There will probably be someone here who can relate.

Thank you so much for that explanation. I didn't understand why I couldn't just get used to soft touch, but they way you explained it made SO much sense. I read it to my husband, and I think it helped him understand better too, because when we were cuddling last night, he only used a firm touch. It made a world of difference for me--I didn't experience the startle reflex at all, and I was able to tolerate being touched much longer than I have any other time lately. I also noticed that he changed the shower head to the massage setting for me, though I actually dislike that setting--it's too rough. But I think that he had listened and was trying to help me.

So things are looking up on the home front, and I'm feeling encouraged by that. I'm feeling slightly less (okay, a lot less) encouraged about getting diagnosed and getting help. But that is a different story...

Thanks again for the info and suggestions.

Light touches are hell. I need a firm heavy touch with the full hand. A single finger even when firm can still be problematic.

I like the art of scrapbooking, but find it impossible due to an allergic reaction to glue and tape (Corn in the adhesive). It takes forever for glue to come off my body where it touched and it burns. It is particularly bad if it gets on my finger nails. It can take days to dissolve. Weirds my husband out because the same glue comes off easily from his hands and nails with soap and water. I don't even handle stamps (lickable or the ones that are basically stickers).

I also hate the feel of many materials, so the materials I can use for art projects is really limited.

My fingers are so sensitive, I can tell the exact percentage of materials in a piece of clothing without looking at the material just by feeling it and how/what kinds of pain my fingers are in.

I like the feel of my husband's facial whiskers (beard/mustach) and tend to play with them. Too bad he is mildly SPD and he doesn't like me playing with his whiskers.

(01-08-2011, 04:49 AM)beck7422 Wrote: Light touches are hell. I need a firm heavy touch with the full hand. A single finger even when firm can still be problematic.

I like the art of scrapbooking, but find it impossible due to an allergic reaction to glue and tape (Corn in the adhesive). It takes forever for glue to come off my body where it touched and it burns. It is particularly bad if it gets on my finger nails. It can take days to dissolve. Weirds my husband out because the same glue comes off easily from his hands and nails with soap and water. I don't even handle stamps (lickable or the ones that are basically stickers).

I also hate the feel of many materials, so the materials I can use for art projects is really limited.

My fingers are so sensitive, I can tell the exact percentage of materials in a piece of clothing without looking at the material just by feeling it and how/what kinds of pain my fingers are in.

I like the feel of my husband's facial whiskers (beard/mustach) and tend to play with them. Too bad he is mildly SPD and he doesn't like me playing with his whiskers.

Thats a bummer about the adhesive allergy--I am the same way with medical adhesives. The burn my skin, and I have to use rubbing alcohol to remove the residue.

My hands are sensitive, though not anywhere as sensitive as yours. My husband bought me a wonderfully warm, soft and heavy blanket that has satin edging on it (I love to "pick" at the satin--I like the way it feels between my fingernails.) But I don't use the blanket because I don't like the way the plush feels on my hands.

Oh, I actually do digital scrapbooking, although I started with regular scrapbooking with my stepmother. But... I can't really afford the supplies for traditional scrapbooking, so I get lots of freebies online to scrap with. And I give my family dvd's of the books so they can watch them and print whichever individual pages they want.

My hands are pretty sensitive, but nothing like that. The medical adhesive really gets me, too. I end up with welts more often than not.

I'm sorry you're having trouble getting a diagnosis. That is so frustrating.