Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hi all!
This question for everyone pertains to many many posts and replies from our awesome little chronic pain support group community...but it particularly came up after Aronia's "ice cream" post and some of the responses referencing other people's reactions to us -- people reacting with stares, comments, looks, etc. to our (or anyone for that matter) differences in the way we look and/or move.
Which made me think about something that I am very cognizant of, sensitive to, and very acutely aware of When it comes to raising my almost 4 year old daughter...which is (I'm sure greatly influenced by my own insecurities stemming directly from my very personal struggle with chronic pain) teaching her to be tolerant, open minded, NONJUDGMENTAL, understanding, and compassionate towards everybody and everything regardless of regardless of our differences. And with this, my husband and I are very open with her and encourage her to ask questions and inquire about (well, EVERYTHING...but particularly regarding this topic) all of her little 3 year old curiosities -- for example: when she see's someone with a case on their arm she'll ask how they got their "boo boo"...one morning this week when I picked her up from Pirate Camp she was so excited to show me her friend adorablely freckled friend and she happily and innocently asked me what all of her special "dots" were....you guys get the idea. My daughter, like all little ones, is so innocently curious and fascinated with everything new in her little world and I am beyond adamant to parent her in a way that guides her to express her curiosity in the kindest and most respectful way possible in an effort to feed her innocent brain in the healthiest way possible.
Sooooooooo, my long drawn out question is:
*** In terms of younger children, particularly when accompanied by their parent(s), what do you feel is the best/most appropriate/respectful --if any -- way to express interest or questions regarding your disability (or walking device, or brace, or scars, etc...)?
Would you prefer question asked with a smile (ex: mommy, how come she has a wheelchair? -- with mommy happily referencing/relating it to her own, or a loved one's disability ) or would you prefer mommy to happily kind of quietly shush the question and redirect the child away or in a different direction? You know, those kinds of situations???
I truly respect anyone's personal feelings regarding something like this, and I ask because I really care and want to take this opportunity as a learning experience as a parent...a parent that is working her butt off to raise the kindest most compassionate child possible. I know I went into way too much detail for just asking a basic question like this, but I did this because I want to take every opportunity that I can to make a positive teachable moment for my daughter, but equally to make an effort to promote the overall bigger picture of closing the gap (in reference to social settings) between those of us with differences and/or disabilities -- invisible or not -- and the rest of the population out there.
Oh my goodness gracious...I hope I didn't lose everyone in my first paragraph...I really did plan on making this a lot shorter and sweeter, but when I get going on something that's personal to me, I kind of get carried away....obviously! Anyways, I really appreciate anyone that is willing to be open and honest and share how they feel about this kind of thing! I look forward to hearing from you guys!!!
This question for everyone pertains to many many posts and replies from our awesome little chronic pain support group community...but it particularly came up after Aronia's "ice cream" post and some of the responses referencing other people's reactions to us -- people reacting with stares, comments, looks, etc. to our (or anyone for that matter) differences in the way we look and/or move.
Which made me think about something that I am very cognizant of, sensitive to, and very acutely aware of When it comes to raising my almost 4 year old daughter...which is (I'm sure greatly influenced by my own insecurities stemming directly from my very personal struggle with chronic pain) teaching her to be tolerant, open minded, NONJUDGMENTAL, understanding, and compassionate towards everybody and everything regardless of regardless of our differences. And with this, my husband and I are very open with her and encourage her to ask questions and inquire about (well, EVERYTHING...but particularly regarding this topic) all of her little 3 year old curiosities -- for example: when she see's someone with a case on their arm she'll ask how they got their "boo boo"...one morning this week when I picked her up from Pirate Camp she was so excited to show me her friend adorablely freckled friend and she happily and innocently asked me what all of her special "dots" were....you guys get the idea. My daughter, like all little ones, is so innocently curious and fascinated with everything new in her little world and I am beyond adamant to parent her in a way that guides her to express her curiosity in the kindest and most respectful way possible in an effort to feed her innocent brain in the healthiest way possible.
Sooooooooo, my long drawn out question is:
*** In terms of younger children, particularly when accompanied by their parent(s), what do you feel is the best/most appropriate/respectful --if any -- way to express interest or questions regarding your disability (or walking device, or brace, or scars, etc...)?
Would you prefer question asked with a smile (ex: mommy, how come she has a wheelchair? -- with mommy happily referencing/relating it to her own, or a loved one's disability ) or would you prefer mommy to happily kind of quietly shush the question and redirect the child away or in a different direction? You know, those kinds of situations???
I truly respect anyone's personal feelings regarding something like this, and I ask because I really care and want to take this opportunity as a learning experience as a parent...a parent that is working her butt off to raise the kindest most compassionate child possible. I know I went into way too much detail for just asking a basic question like this, but I did this because I want to take every opportunity that I can to make a positive teachable moment for my daughter, but equally to make an effort to promote the overall bigger picture of closing the gap (in reference to social settings) between those of us with differences and/or disabilities -- invisible or not -- and the rest of the population out there.
Oh my goodness gracious...I hope I didn't lose everyone in my first paragraph...I really did plan on making this a lot shorter and sweeter, but when I get going on something that's personal to me, I kind of get carried away....obviously! Anyways, I really appreciate anyone that is willing to be open and honest and share how they feel about this kind of thing! I look forward to hearing from you guys!!!
-
I invited Bill to have dinner with me last Sunday. He wasn't willing to drive 7 hours to mid Michigan and teased me with his beautiful ribs!!! So, of course I ate alone and had cedar salmon
-
check out that smoke ring. It tasted really good. I smothered it with Maulls BBQ sauce which is Local to St. Louis and one of the best I ever had.....
Jordans I do not have my own kids but I kind of wanted to tell you that you have a world of good to give your daughter and that whatever you do in her eyes you are loved as mom....so I will defer to the others who have raised children...but me I was a teacher of those who had the disabilities and kids can be cruel to other kids and they know what they are doing and do not care because that other kid is different than those they care about....
Going back to your answer to my question, thank you so much for sharing and giving an explanation along with it....that's exactly what I was looking for to give me deeper understanding regarding this whole topic. First, let me start by saying that I appreciate, and found it helpful, to hear your rule of thumb when it comes to children being the potential recipient of any curiosity or questions. That was actually something I had specifically wondered about because the last thing I would ever want to happen would be for a child/adolescent to ever, under any circumstances, have their feelings hurt or feel self conscious -- feeling anything less than true positivity and encouragement -- from an interaction with myself and/or my daughter. And this information certainly does help to reassure approach, literally and figuratively, this type of situation.
I would like to clarify, too, in reference to the way my daughter expresses her questions/curiosity she has never ever actually addressed anybody. Rather, something or somebody will catch her eye and she always says..."Mommy, how come s/he ______?" Or "Mommy, why is s/he _____?" etc...and I always respond to her with the ultimate goal of giving her a well rounded age appropriate answer while explaining it to her in a way that helps guide her to feel compassion (not sympathy or feeling sorry) and understanding.
Even though my daughter only ever addresses me, she's a a very wide eyed little 3 year old love bug, many times we are standing next to "the" person in a line, or seated near them, or walking by, so the chance that she and I are the only ones hearing/listening are slim to none. And not only do I always, no matter what, acknowledged and respond to her, one of my personal parenting "things" is that --regardless of the topic, how silly or serious, where we are, what we're doing -- I will forever and always listen to what she has to say...and actually hear (not just listen) to what she's saying...and engage and comminicate with her because I want her to know that what she is thinking and saying is not only important (especially to me ) but can be used as a moment of growth and learning. (Hence my original question and this conversation as a whole!). So anyways, when she asks her curious little questions, I want to respond not oh for her, but truly also for the person she is asking the question about...because I don't want to make them feel uncomfortable (or at least any more than the situation has already made them feel!) by trying to shush my daughter or her question or anything like that. Does that sort of make sense? I know that it seems like I'm making a way bigger deal about this whole thing than a normal human being would/should/could, but honestly I just want to show my respect and compassion for others while simultaneously helping my daughter learn and grow from these these moments.
And again, I really do appreciate your personal stories and experiences with this type of thing because I understand how sensitive things like this can be for people, some more than others, and it's important for me to show how much I care :) that's all.
My 26 yr old grew up with the severest of my BiPolar and that was not easy..it was hell at times.....but he survived and was never harmed, and grew up with an incredibly compassionate spirit...it helped form him to the adult he wanted to and turned out to be. He was in the Volunteer Fire Dept. @ 15 and a Firefighter as an adult and also a Member of the Army National Guard, who works as a Recruiter. It was not easy to "allow" my child to run into burning buildings when the natural instinct should be to run out...but I doubt I could've stopped him. He has always been a very quiet soul, so never asked strangers about injuries, but was never judgmental, and naturally gravitated to the "outsiders" in High School, or the "special kids". As a High School Football player, he went against the grain and never did the popularity thing.
My 17 year old grew up with the BiPolar under incredible stabilization, but my 30+ surgeries throughout his life and the worst of the physical illness. I've always been a workaholic, so I've never been at home worked around hospital stays, from hospitals, during recovery and in the office right after. This child like my oldest also has a very giving and compassionate spirit. He's a little more like me and is a bit of an overachiever, but loves to spend free time helping the elderly folks from the church with yard work or whatever they need. He plans on going in the Army after he graduates, and has been in ROTC, Football, Eagle Scout and Honors Classes all through High School preparing for Officer Candidate School. He's pretty set and driving towards his career. He is more outgoing and will engage people but doesn't necessarily ask folks about their injuries...more the type to go up to a wheelchair bound child or teen and engage them, hang out with the autistic kid from school.
Although neither are the type to question peoples injuries they have a comfort level around illness and injury that comes from dealing with a parent who has been in the hospital for long periods or time or recovering or dealing with post-surgical pain, chronic pain or just the symptoms of multiple chronic illnesses. We also never made the BiPolar a big deal...it was explained in age-appropriate ways to both boys at different times...but through 4 of my psych stays over the past 16 years, the boys were brought to the hospital to visit every afternoon, we did homework, we played board games, whatever the hell my brain was doing, Grammy would bring the boys and I would make myself spend normal time with them afterschool and on Saturdays. So they grew up with that level of Comfort also.
Now, I'll say that "Age Appropriate" is a big set of 2 words. If the Psych Hospital that I was in all 4 times hadn't been extremely nice and top notch, I might not have subjected them to it, but it was, and it worked. My oldest son was born with several very severe illnesses himself and he was pretty used to hospitals and Dr.'s until his pre-teens. So he had that extra, "I know what it's like" and as anyone with CP knows what you deal with in your life helps mold you into who you turn into, whether you let it be bad or good. My youngest son was perfectly healthy and he had the same spirit, so one was completely influenced by association, one was shaped by association and familiarity.
Let your daughter ask questions....I don't know many people who would be offended by the innocence of a child's curiosity....if they are, then that's their issue, not something your daughter is doing wrong.
I really enjoyed reading about your boys :) they sound like amazing kids, but even better, amazing human beings. The way you described the young men they've grown into is precisely what I'm trying to achieve with my daughter. You should be very proud -- not just of them, but of yourself as their mother, too!
Also, I really appreciate the supportive comments that you made at the end of your reply. It means a lot!
I don't think you'll have too much to worry about with your daughter, you seem to be heading her in the right direction already and she sounds awfully sweet and adorable.
I was always amazed by the "stay at home mom's" of the world, it was just something my brain would not let me do. You guys have very busy, hectic jobs a good deal of the time.