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Relieved to find this forum!
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Ourfishies Offline
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Posts: 39
Joined: Aug 2010
#1
Relieved to find this forum!

Hi,

My boyfriend has SPD, particularly sensory over-resposivity.

Before we started dating, he told me that he had something called sensory defensiveness which meant it hurt him when people touched him. I had never heard of anything like that before and thought it must be something purely psychological.

As we became closer friends, I began to see how things bothered him more than others. I decided to research sensory defensiveness and found a checklist that described him exactly. In addition to being tactile defensive, he is also extremely bothered by light, certain sounds, smells, and textures of food.

When we eventually started dating, I began to really see and feel the extent to which SPD affects his daily life. For one thing, my "love language" or how I feel loved is when people hug and hold me. This has been really hard at times and I've learned how selfish I can be. He is absolutely amazing though and often insists on hugging me even when it's really hard for him. However there have been times when he's hyperventilated or thrown up while/after hugging me. I felt absolutely horrible after that.

Or there have been times when I've had a horrible day and just want him to be there for me and hold me, but it's just too hard for him. I have to keep telling myself that just because he doesn't want to give me a hug doesn't mean he doesn't love me.

Another problem we have is going to social events (weddings, church, parties). Right now it's summer and the sun really bothers him. Sun glasses don't work either because he feels them constantly on his face. I hate going to social events without him and have people ask, "Where's ____? Is he anti-social? Does he not like people?" etc. It's not even so much what people say as it is the fact that I miss him and want to do those things together.

I love him so much and we're planning on getting engaged in the near future! ^^ He's extremely gifted and so compassionate. You have no idea how relieved I am to find this chat room. I've taken out Sensational Kids, The Out-of-Sync Child, and Too Loud too tight too fast too bright from my library, but I've really wanted other people with whom I can relate.

Thanks and look forward to getting to know you guys
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beck7422 Offline
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#2
RE: Relieved to find this forum!

There are Irlen Lenses and Irlen Contacts for those with extreme Light Sensitivity. I have a really bad case of Light Sensitivity and can not function without my Irlen Lenses. I have a stigmatism that unfortunately makes the Contacts not be a good option for me. Sad Hate glasses.

On hugs, are gentle or big hugs easier for him? For me, light touches are hell and full body hugs are wonderful (although I sometimes get trapped hugging people and can't release them). The Wilbarger Protocol should help make hugs easier, but it won't "fix" the problem.

Does he have any problems with perfumes or incense? I had to leave a few weddings early because I couldn't breathe and my husband had to carry me out of there. The worst was at an Eastern Orthodox Christian church. Incense permeated every inch of the place and I had to leave even before the ceremony started.

Since your fiance is affected by sounds, have him pick out ALL the wedding music (including the DJ list). I did that and it made a major positive difference for my wedding. Lots of Heavy Metal songs for the reception and some Star Wars for the Processional. A million times better than painful 70's disco music.
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mawkinberd Offline
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#3
RE: Relieved to find this forum!

Hi, Ourfishies! Smile It's nice to meet you, too. And it's wonderful to see that your seeking out people who understand what's going on with your boyfriend. I know, from what my husband says, that it's very difficult to understand it when you're not dealing with the same issues. It really shows that you care a lot about him, and that's always a wonderful thing. Smile

I can understand a lot of what you're talking about. My husband has real difficulties when I pull away from his touch. For one thing, I can't stand touch that comes out of the blue. In other words, don't ever, ever surprise me! Tongue I wouldn't be surprised if that's something your boyfriend has difficulties handling. Plus, like beck said, the "weight" of the touch makes a huge difference. Many of us (including me) can't stand some types of touch but crave others. For me, deep, intense touch to non-sensitive areas are something I crave. Things like this are pretty much any non-ticklish areas, like most of my back, shoulders, tops of my legs or knees, areas of that sort. And my touching someone else as opposed to their touching me makes a big difference, too. It's easy for someone not in my shoes to not know where to touch me or how, and no matter how much of an effort I make, there's only so much relaxing into it that I can pull off. So it's worth experimenting on where he likes to be touched most and least, how hard or soft, and that sort of thing. And it may be easier for him to hug you if he hugs your back, so that you only touch his arms around your front, especially when you really need the touch and he really needs the control.

As for going out, I know exactly what you mean, except, of course, that I'm on the other side. Smile I also have difficulties with out-of-the-house activities, with all the bright lights, loud people, immense amounts of sensory overload. Even sitting through a church sermon is sheer torture for me. Sure, other people are going to ask. And it's alright to say, yeah, my boyfriend has medical issues that make it difficult for him to deal with this sort of thing. Of course, you can fill in whatever you want for medical issues, but it's the truth. And as for doing things together, there are so many things you can find and do that will be fun for you both. It will take some working, but I'm sure you'll find some things that are easier for him in the sensory world. I love walking in the park, but I have fewer sensory issues than some here. It bothers my allergies, and when I get back to the open area (I walk the wooded paths), I usually have to do my sunglasses for a bit, but the absence of lots of noise and people really makes things easier for me. My idea of fun might not be his, but I'm sure there's something out there that you can work out together. Smile

Whew, that got overlong! lol I hope that, with a little experimenting, you can find something that will work better for both of you. And you can take comfort in this; if he's willing to put forth that much effort to meet you halfway, he must really love you, too. Smile With that much love from both sides, there's a lot of promise there.

Look forward to hearing more about you both! hug
Affectionately yours,
Sarah
My Blog - Mawkinberd's Nest
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Ourfishies Offline
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#4
RE: Relieved to find this forum!

Thanks for the replies Smile

Quote:There are Irlen Lenses and Irlen Contacts for those with extreme Light Sensitivity. I have a really bad case of Light Sensitivity and can not function without my Irlen Lenses. I have a stigmatism that unfortunately makes the Contacts not be a good option for me. Hate glasses.

That's interesting, I'm gonna talk to him about that. Maybe that would help. Do you know where you would buy irlen lenses and how much they would cost? Do you have to get them prescribed by an eye doctor?

For hugs, light touches are harder for him. I prefer firm hugs anyway so I always give him firm hugs. He's never tried the Wilbarger Protocol before so that might be something to look into.

Mawkinberd, I can definitely relate to your husband. It's been so hard training myself to not take it as rejection when he jerks away from a hug or kiss when all I wanted was to show him that I love him.

(08-19-2010, 01:45 PM)mawkinberd Wrote: Sure, other people are going to ask. And it's alright to say, yeah, my boyfriend has medical issues that make it difficult for him to deal with this sort of thing. Of course, you can fill in whatever you want for medical issues, but it's the truth.

Thanks for the suggestion, but he wouldn't like that. He doesn't like people knowing even when he has the flu. I'm pretty sure he's only told 2 other people beside me about his sensory defensiveness.
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beck7422 Offline
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Posts: 342
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#5
RE: Relieved to find this forum!

Ugh. Men and hiding their problems!

On Irlen Lenses, I have linked below the Irlen Center's web page to the find a clinic page.

http://irlen.com/index.php?s=findclinic

Irlen Lenses are expensive. However, there is an inexpensive diagnostic test you go through first that will make it clear if the Irlen Lenses would be beneficial to you.

I highly recommend anyone with Light Sensitivity problems at least go through the diagnostic test, use the Overlay they give you for two weeks, if that significantly improves your reading, then go through another test for the Irlen lenses.

For me, the Overlay made it possible for me to read textbooks again. When I went back to test the Irlen Lenses, for the first time in over 6 years I could walk down a hallway without walking into a wall.
I forgot to mention the price. You have to buy your glasses elsewhere and then they tint the lenses for you to block out the wavelengths of light that are triggering your brain to go into sensory overload. The tint is about $150-200 I think. It has been a while since I last got mine.

Contacts are a lot more expensive. Each pair of contacts to be tinted is about $120. *Shudder*

Although expensive, being able to walk in a straight line, not get stunned every time the light changes a little, and being able to read whatever I want means more to me than $200.
(This post was last modified: 08-20-2010, 01:58 AM by beck7422.)
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Ourfishies Offline
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#6
RE: Relieved to find this forum!

(08-20-2010, 01:52 AM)beck7422 Wrote: Ugh. Men and hiding their problems!

On Irlen Lenses, I have linked below the Irlen Center's web page to the find a clinic page.

http://irlen.com/index.php?s=findclinic

Irlen Lenses are expensive. However, there is an inexpensive diagnostic test you go through first that will make it clear if the Irlen Lenses would be beneficial to you.

I highly recommend anyone with Light Sensitivity problems at least go through the diagnostic test, use the Overlay they give you for two weeks, if that significantly improves your reading, then go through another test for the Irlen lenses.

For me, the Overlay made it possible for me to read textbooks again. When I went back to test the Irlen Lenses, for the first time in over 6 years I could walk down a hallway without walking into a wall.
I forgot to mention the price. You have to buy your glasses elsewhere and then they tint the lenses for you to block out the wavelengths of light that are triggering your brain to go into sensory overload. The tint is about $150-200 I think. It has been a while since I last got mine.

Contacts are a lot more expensive. Each pair of contacts to be tinted is about $120. *Shudder*

Although expensive, being able to walk in a straight line, not get stunned every time the light changes a little, and being able to read whatever I want means more to me than $200.

oh man, that's expensive. Can medical insurance cover that? My boyfriend and I are poor students Tongue
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beck7422 Offline
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#7
RE: Relieved to find this forum!

Insurance doesn't cover it. Sad

It does qualify as a medical expense though for FSA and tax deductions.
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Ourfishies Offline
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#8
RE: Relieved to find this forum!

darn. Well at least it's something to look into. thanks for the suggestion Smile
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mawkinberd Offline
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#9
RE: Relieved to find this forum!

I'm sorry that he doesn't feel comfortable sharing such things with others. He probably faced a lot of people who told him he was complaining about nothing that he's super emotionally sensitive to that rejection. If I had nickle for how many times people poked me and said, that doesn't hurt, quit whining... (sigh). But, perhaps as he gets more comfortable with it and gets to know relatively normal, rational people deal with this, then he will feel more comfortable acknowledging it to himself and (later) the world. Having said that, I haven't told many people, either, but it's more because I'm leaving it at a "need to know" basis. lol My boss knows, but only because he wouldn't quit poking me! Men. Tongue

I'm glad you've both made beginning steps to know what touch works and what doesn't. And it may help you to know that, because of where in the brain this arises (theoretically), it is completely involuntary that he jerks away. I know that helped my husband, to know that some of my reactions is completely out of my control when they happen, and they don't get better with repeat stimuli.

I'm saving up for an "official" Irlen test myself. If you find a new, unknown way to fund it, let me know! lol
Affectionately yours,
Sarah
My Blog - Mawkinberd's Nest
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Ourfishies Offline
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Joined: Aug 2010
#10
RE: Relieved to find this forum!

lol I will. I can't believe it's so expensive! Tongue
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