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+--- Thread: So glad to have found you all here! (/thread-87.html)
So glad to have found you all here! - momommius - 08-10-2010
1. What brings you here?
Hi, my 8 yr old daughter has SPD (diagnosed over a year ago). I never knew anything about the condition before that. Now I am looking for fellow parents to get to know as a support group. I only know one lady with kids who have SPD and I feel like I'm always running to her with questions. It would be nice to have more friends who know what it's like to have a child with SPD.
2. What is your relations to someone with SPD?
As I previously mentioned, my daughter is my main concern, but in my research and observations, I think that both my husband and I also have a degree of SPD. We've just learned to deal with it better than our daughter has as of yet.
3. Is there any immediate help you need?
I need people in my life who don't say, "Wow, what's wrong with your kid?" Not that anyone has really said that before, but sometimes, you can read a lot from how people look at you and the situation that is transpiring.
5. SPD doesn't run your life! What are you or your child's gifts?
My daughter loves to draw and is very talented & creative.
Interests?
She loves Math and Science (especially animals and bugs)
6. What do you like to do in your spare time? Any hobbies or interests?
I am a photographer in my spare time and do childrens and family photography as a business.
RE: So glad to have found you all here! - mawkinberd - 08-10-2010
Hi! So nice to be found by you.
I'm someone with SPD, but I hope I (along with other folks!) can add some perspective on things you would like to know. There are lots of different ways that SPD shows itself, but luckily, we have a little of all kinds around here.
And I like to think that we all want to help one another out on this journey. 
It sounds like your daughter is very intelligent! I'd love to see one of her drawings, if you have a scanner or such.
And I'm a little jealous of your talent with the camera; my little point and shoot is about as good as I get, but I do enjoy making my photography into digital scrapbooks. 
I'm looking forward to hearing more about you and your family!
RE: So glad to have found you all here! - momommius - 08-11-2010
Thanks for writing Sarah! I've still not figured out how to do everything on this site yet, so I'm glad I was able to find your message. Can you add pictures on here? I'd be glad to share some of my daughters drawings. I looked at your website and you look like you are pretty talented yourself! I've never really gotten into the whole scrapbooking thing. One of my friends is a Creative Memories rep., and she is always trying to get me to come to one of her parties, but I don't have money for that kind of stuff (and it is pretty expensive i.m.h.o..
If you'd like to see some of my photography, I have a website, photosbyshaz.com
If you know how I can put pictures on here, I'd sure appreciate that info. Also, I'd love to add you as a "Buddy" here, but I don't know how to do that either. Thanks again for writing, hope to hear from you soon!
RE: So glad to have found you all here! - beck7422 - 08-12-2010
I am a person with SPD and not a parent. That said, be active in asking questions and we will all answer (parents and people with the condition).
What are your family's biggest SPD challenges?
My biggest SPD challenge is my sensitivity to light. I had to purchase special glasses to help prevent being constantly stunned by the light. Occassionally I still get stunned into a statue, but the trigger is a camera flash through the sides of my glasses or some Security person forcing me to take my glasses off to verify I am me (someone else has to put the glasses back on for me).
RE: So glad to have found you all here! - momommius - 08-12-2010
beck7422- My daughter is also overwhelmed with lights. Sounds too distress her. Fireworks this year sent her into a screaming, crying, meltdown. Also, we got caught in a terrible thunderstorm with lots of lightening, thunder, hail (on top of our van), and high winds. I had to pull the van off the road and get in the back of it to hold her and try to calm her as she was screaming and crying so badly. After it was all over (in both cases), she balled her body up, rocked herself, and sucked her thumb. Honestly, I was very freaked out at this point myself with worry for her. Her pediatrician seems to think she will grow out of these issues, or actually he said "just learn to deal with them in better ways as she gets older". Right now, my biggest concern is how she feels when these episodes happen and people are around. She is only 8, but notices that people think she is "strange" because she acts like this. It makes me angry as well because people can be so mean sometimes, I just want to slap them and say "Stop staring at her, she is NOT a freak!"
Any insights on that?
RE: So glad to have found you all here! - beck7422 - 08-12-2010
I no longer go to fireworks. They stun me and cause migraines. My husband doesn't like them because his brain thinks that a gun is going off and it freaks him out (popping balloons is a similar problem for him). My husband has a mild case of SPD (smell is his worst trigger and it sets off his OCD).
Hugging your daughter full body during lightening and thunder, especially if she seems to crave it, is the right thing to do. It really helps me when my husband hugs me full body during a storm. Otherwise, my body seems to be on fire. One of these days I will remember do the Wilburger Protocol during a storm, because that really helps when my nerves are on fire.
I wouldn't be afraid of the balling up, rocking, or sucking her thumb. It is all just ways of self input to help deal with the outside world. If she needs it she needs it. You can help by handing her a thick blanket/jacket to wrap herself in or use the Wilbarger Protocol.
Doctors are idiots. That is my polite way of talking about them.
I recommend EMBRASSING the weirdness and treating it like it was normal. If someone else comments about it, just say that your daughter needs to do it and she will be available to play once the storm is over.
People stare. No big deal. It is annoying, but again if you make the weirdness "normal" in your own mind then it becomes no big deal. If people want to comment or interfere tell them exactly how they can best help your daughter through her SPD incident.
In my case, no matter where I travel I let complete strangers know what kinds of things are "perfectly normal" for me so that they don't freak out on me. "Perfectly normal" things for me that aren't dangerous that I tell them up front not to get upset about: paralysis, shaking, falling, confusion, and stuttering. I also tell them what they SHOULD be paranoid about and how to handle these emergency situations: choking and any complaints about Popcorn or Nuts.
I am telling this to complete strangers within 5 minutes of meeting them, because if I forget then I almost always suffer for it. However, when I tell people then I can almost be "normal", because the strangers will ignore my weirdness for the most part.
I do find that laughing about being a freak or weird helps diffuse any major problems before they start. It is a hard skill to learn how to laugh at yourself, but it makes others less likely to pity or abuse you.
RE: So glad to have found you all here! - mawkinberd - 08-17-2010
Sorry to get back so late to this; things have been crazy around here! Yes, you can post pictures here. At the top of the page, there is a link to the gallery. It's not very active right now, so have fun!
I enjoyed looking at your portfolio online. Man, wish I could do that! lol I'll stick to my point and shoot, though. I'ms with my scrapbooking.
And, just so you know, digital scrapbooking is far less expensive than traditional. You probably already have photoshop for your photography, but if you don't, I use GIMP, which is open source and free. Besides that, I also use many free resources offered by different artists online. It takes some research, but once you know who the good goodie givers are, you can do digital scrapbooking practically for free. I understand your daughter's reactions. Frankly, I often feel that way after a strong storm, although my coping looks a little different. When you get in an "emergency" situation like that, let her guide what she needs most. Beck is right; good, strong, full body hugs (if she wants them) can be very calming. In other times, though, you can help her before she faces those problems with daily doses of deep pressure, any kind of exercise that gives good pressure to the joints (trampoline, rolling on an exercise ball, etc), or any OT help. The Wilbarger protocol, for example, is something an OT can teach that is helpful to many people.
As for other people, I don't really have any good advice for that. Of course you're going to want to protect your daughter from people who are thoughtless, staring, or making rude comments. Frankly, they're not going to go away. If, rather, you teach her to take these in stride, take them as the idiotic comments they are, and help give her a sense of humor about them, it'll help her in the long run. The range of "normal" is a lot broader than most people want to credit. Most of those people who are staring rudely have fought such impulses in themselves and are showing the internal editor that tells them not to "act out in public." If you have the chance to educate them, great. If not, it's their loss. Your daughter is a wonderful, creative, unique individual who gets overloaded more easily than most. They're missing out on getting to know her, if their attitude gets in the way.
Are there any other situations where your daughter has a lot of trouble?