vancityippy
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Post by vancityippy on May 7, 2013 20:44:37 GMT -5
I would love to hear fom dads who have disabilities about the experience of parenting. What is it like? What are the challenges? How have your children adapted to the experience? What are the benefits to having a disability and raising a child? What are your fears? What were your fears before, and how has the experience changed how you felt before?
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Post by mike on May 8, 2013 4:11:32 GMT -5
Vancityippy,
I am not all that disabled; aside from wearing leg braces most people probably wouldn't notice. Oh and I walk a bit awkwardly, but that's no big deal. There are a lot of other issues with my disability, but they aren't visible so most people wouldn't know.
I have 2 daughters and a 15 year old son. The only impact is very slight, as an example at times my son has teased me by claiming he can outrun me (which he can), but I always point out that although that's true, old age and treachery will overcome youth and skill every time. Inevitably a short contest will ensue, and I catch him every time.
The only times it has been awkward were when I realized one of my daughters also has the problem, which never seemed to bother her, but it bothers me. When my son was born, we were worried if he would have it, but fortunately he doesn't.
Once or twice my kids have asked why I wear braces, and I just tell them that my joints are wobbly. There is no reticence to discuss it, but that has been about the extent of their curiosity. A couple times our daughter who also has EDS asked me what wearing braces was like. When I told her, she commented that she expects she will also need them when she gets older. I asked her how she felt about that, and she said she really didn't care one way or another, she just wondered what it was like. She was about 16 then, so her indifferent attitude surprised me, but it was also reassuring that she was comfortable with the concept.
So I guess the answer is that for me, I don't think it has made any significant difference.
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Post by ladyliz on May 8, 2013 9:39:23 GMT -5
Hey this is a great thread! I really look forward to reading some more answers. Thanks for yours, Mike!
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skywheeler
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Post by skywheeler on May 8, 2013 12:09:08 GMT -5
Hi all, yes, excellent topic. I have a 7-year old son that we adopted at 9 months. I’m a C5-6 complete quad (and have been for 22 years), so it’s certainly an issue I’ve thought about.
Simply adopting was a challenge in itself. We briefly considered various fertility options but decided on adoption pretty quickly. I think the most discriminated that I have ever felt was when the Chinese government rejected our application due to my disability. Thankfully we were able to find another nation that was less discriminatory.
When my son way young I was pretty limited in how I could care for him. The obvious things like dressing, changing a diaper and feeding him I expected (although still felt sad that I could not participate in such things). Not being able to hold him, at least without someone ready to catch him if he fell was more difficult. Also not being able to be at his level (the floor) was sometimes a source of frustration. I like to think that I made up for it by times when he was in a high chair or crib. It was also difficult to not be able to go anywhere with him alone – I can drive my van, but couldn’t get him into or out of a car seat. Still, it was (and is) such a joy to have him that these were relatively minor inconveniences.
As he has grown older and more independent I have been able to be much more involved. Every now and then I wish, and feel guilty, about not being able to do some stereotypical ‘dad things’ with him – play catch, go camping, ride a roller-coaster. But that’s o.k., we do quite a bit together – read, play computer games, board games (he often has to move both sets of pieces / shuffle cards / always be the dealer), I take him out to eat, to the playground, it’s fun stuff.
It’s interesting to try to gauge how he develops his conception of disability (and fatherhood). He hasn’t ever had a father without a disability, so in one sense I think it comes very naturally to him. Most questions are very wheelchair-specific (last week after I got a haircut he asked if all barbers give haircuts to people in wheelchairs … I think he was just trying to figure out the logistics, but at first I thought that maybe assumed that I had to go to ‘a special place'). Sometimes I’ll notice a picture that he’s drawn at school with a guy in a wheelchair in it , which I think is kind of cool.
I’ve noticed that when I meet his friends he will over-explain my disability (which is a habit I had shortly after my accident). Sometimes he’ll apologize for no apparent reason that I can decipher (“sorry everyone, my dad is in a wheelchair”). And sometimes he just feels the need to explain – “my daddy broke his neck so now he’s in a wheelchair.” At times it makes me uncomfortable (the apologies especially), and I try to teach him some discretion (and that it's not necessary to apologize for having a disability). I fear that at some point he’s going to launch into a discussion of how I go to the bathroom or some such less publicly appropriate story, but so far I’ve been safe. The kid talks a lot, and one can never really tell what’s going to be blurted out next.
I like to think that my disability has taught him some things. He is very helpful, not just for me but for others as well. I like to think he’s very accepting of differences, but that may be more just a function of his age. I like to think that his view of ‘what it means to be a man’ won’t revolve around physical prowess, but that he’ll grow up thinking that being a bookish nerd is a perfectly acceptable model of masculinity…
Fears… well, sure. I fear that I won’t be able to physically rescue him if needed. He jumped into the deep end of a pool before he could swim once and thankfully someone else helped him out. I was a wreck for several days. I fear getting separated in a crowd (would like to take him to a baseball game but fear doing so alone). But I also fear what will happen when he becomes a rebellious teenager. Will he resent me / use my disability against me (“everybody else’s dad did X with them, but you never could!)… or, will his rebelliousness be stunted by my disability (“no guys, I really can’t stay out all night / go to college far away because my dad needs me”) … what if he just stops listening to me – I can’t very well physically enforce much. For that matter, I can’t really keep him from getting my credit card out and going on a spending spree… And really, I worry about dying prematurely from any number of things and leaving him fatherless. Of course, my number one fear is for his safety, but that is rarely related to my disability.
Being a father is a tremendous experience for me. I think men with disabilities are often not seen as fathers (except maybe the very old), but I think it’s an excellent experience for me and a positive one for my son as well. I tend to think disability adds a dimension to one’s life experience, and having an extra dimension in life experience seems like a good tool to have in one’s parenting toolkit.
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Post by Utahquad on May 8, 2013 13:59:35 GMT -5
Thanks Sky, I'm in a similar situation as far as disability goes but still hope to go down the father road one day and really appreciated your insight.
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Post by MarineAmp on May 8, 2013 16:46:09 GMT -5
I would love to hear fom dads who have disabilities about the experience of parenting. What is it like? What are the challenges? How have your children adapted to the experience? What are the benefits to having a disability and raising a child? What are your fears? What were your fears before, and how has the experience changed how you felt before? Emma and I gave birth to a healthy boy 8 months ago to the day. There are definitely challenges to being a parent, but every smile and giggle he gives us is more than enough compensation for all that we need to do for him and then some. Being a DAK amputee, my challenges usually are just trying to haul him from one place to another. My past experiences with carrying luggage, using straps and whatever else I can think of has come in pretty handy though. Although it is tough, I can and I have loaded him in his car seat, got him out to the car, went to target, the gym, and a few other places, and then made it back home pretty successfully. Being that he's really young, there isn't anything he's really had to do to adapt to me. Riding on the front part of my wheelchair while strapped to me is just second nature for him, and he always enjoys the rides. He is just now starting to get interested with my wheels or little things that might be hanging from my chair. I can't say there has been a whole lot of benefits from raising a kid with a disability at this stage, besides me benefiting from having a cute kid to take the attention off of me in situations that may arise throughout the day. I don't think my fears were too different compared to any other expected parent. There aren't really too many things I'm concerned about with him at this age. I do have concerns that when he starts going to school he may be teased at some point for having a dad without legs. I have some other friends who have had kids since their injury and I feel pretty confident that I am not going to have to sit there worrying about my disability, but just being the best father that I can regardless of what challenges I will have to face.
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vancityippy
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Post by vancityippy on May 8, 2013 19:00:50 GMT -5
Thank you! So interesting to hear, Please keep them coming! Riding on the front part of my wheelchair while strapped to me is just second nature for him, and he always enjoys the rides. CUTE! I do have concerns that when he starts going to school he may be teased at some point for having a dad without legs. Yes. This is something I fear...not for my child but for my potential disabled, future father of my children (hahaha...I'm a future thinker/ worrier) Not that I'm anywhere near the time and place to have children but I have had fears that a man with a disability may have feelings of inadequacy or worry about the impact on his kids... The only times it has been awkward were when I realized one of my daughters also has the problem, which never seemed to bother her, but it bothers me. When my son was born, we were worried if he would have it, but fortunately he doesn't. Yes, all parents deal with a certain amount of "guilt" about their role in contributing genetically and/ or psychosocialy to their childs developent. I can imagine this would be a challenge. Skywheeler, you were infact the reason I asked the question (noticing you were a quad who has adopted a child). I am no where near the place/ time to have children but I certainly know I want them in my life. I have always imagined it possible and have heard of quads with children...But never heard from someone so, thanks. Very cool. I too feel children can benefit greatly on a social and emotional level. The fact that your son moves both board game pieces is too adorable. You, mike (outrunning his son wearing leg braces) and marineamp (carrying his baby on his lap) are hotter than Brad Pitt carrying puppies.
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Post by matisse on May 9, 2013 12:15:36 GMT -5
I would love to hear fom dads who have disabilities about the experience of parenting. What is it like? What are the challenges? How have your children adapted to the experience? What are the benefits to having a disability and raising a child? What are your fears? What were your fears before, and how has the experience changed how you felt before? I always knew I wanted to be a dad, and I have not been disappointed. It's great having a full house with all the noise and activity. As far as the challenges, I suppose it's mostly that in the first couple of years, parenting is a very physical thing. There are many things that either I cannot do, or that would just take too long for me to do. I had a feeling it would be that way, so I was happy when my wife decided to stop working in order to focus on raising the kids. It just made everything easier. I did want her to focus on the things that other people couldn't really do, so we have cleaners, gardeners, and a general household helper to do a lot of the mundane stuff that no one likes to do anyway. My disability hasn't really been an issue for the kids. I guess kids just accept some things as they are given to them. They don't appear to be self-conscious or embarrassed about it in any way, and I am not aware of any instances of teasing. In some ways they just don't and can't know what they are missing, particularly the physical horseplay that dads usually do a lot more than moms. I am sure they would love it if I could do that, and when they get some of that from other parents or relatives, they just suck it up and don't want to stop. That does irk me a bit, because I am sure the other adults come to that same conclusion. One difference between me and other parents that I have noticed, is that I am *much* more of a hard-ass about discipline. I am not the "let's talk about what you did" type, I believe negative reinforcement is sometimes crucial and I am relentless about imposing appropriate punishment. This is partly because of my personality (I am not taking shit from my own kids!!!), but it is also party disability related. I have no physical control over my kids, so they need to be under voice control. They have to know they need to comply, and not think twice about it. I have been taking the kids out alone by myself ever since they turned about 2 yrs old, and I have never had to be rescued by my wife or anyone else due to an obstinate child. I cannot think of a single benefit to being a disabled parent rather than an AB parent that I wouldn't give up in a second. If there is any one thing that benefits my family the most, it is the issues I have with travel and time. Travel is a pain, and my disability does take up time. So I am very aggressive with both, and as a result I end up working from home far, far more than any of my colleagues or pretty much anyone who does what I do. My colleagues travel at the drop of a hat. By being home so much more, it makes it a lot easier for my wife to shuttle the kids around. But more importantly, I know my kids very well, much better than my colleagues do. As a result, I provide real substantive input into managing their lives, not just the superficial "yeah that sounds ok to me." I didn't really have any concerns or fears about being a parent, I would say I had even less than most AB parents. I think that's just a consequence of knowing I wanted to have kids. It seemed natural to me and I figured things would work out. As for fears now, I still don't have any parenting fears. But I will probably die without having seen as much of their lives as I would like, and that is sad.
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Post by handcyclefool on May 9, 2013 16:14:36 GMT -5
Hey there. I have a 16 year old daughter. I am a constant embarrassment to her. Not because of my disability, but because she is a 16 year old girl and I am her father. I am not going to tell you that my disability has had no effect. Occassionally, she gets angry when she thinks about how I was injured. She wants to be able to dance with me or run with me, but it doesn't change the way she feels about me. In spite of my limitations, she feels fortunate. Many of her friends are from broken homes or never had a father that wanted to stay around. I have done my best to give her everything she needs and a few things that are "wants". She is a little spoiled, but she has responsibilities too. To everything there is a balance. On those rare occassions, when she thinks that someone is taking advantage of me, she hasn't hesitated to jump to my defense.
Parenting is a lot of work, but it is also an investment that is worth the effort. Love your kids. Everything else is window dressing.
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lacey
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Post by lacey on May 12, 2013 2:01:15 GMT -5
I'm not a man, and I'm not a parent, but my father became disabled when I was 4, so if you're interested in what it was like from a kids perspective just let me know.
Also, my husband was a DAK amputee and he did most of the parenting of his son. He was an incredible father....and his son adored him. There were issues when his son became older, but it had nothing to do with his disability.
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vancityippy
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Post by vancityippy on May 12, 2013 20:52:22 GMT -5
yes, please lacey! And thank you to matisse and handcyclefool as well... For one, I'm just interested... And secondly...I mean, I want kids, and my current boyfriend is disabled...as much as I have no doubts that parenting is doable, I have certain fears...so hearing different stories is just, comforting on some level...even if they're not totally positive it's just cool to hear people's experiences...
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Post by BA on May 12, 2013 21:57:59 GMT -5
Hey there. I have a 16 year old daughter. I am a constant embarrassment to her. Not because of my disability, but because she is a 16 year old girl and I am her father. Parenting is a lot of work, but it is also an investment that is worth the effort. Love your kids. Everything else is window dressing. I have a near 11 year old daughter who is the same. Love your kids it all it is about. Nothing more, nothing less. Some of us are strict, some more lenient. In the end what they know and value is unconditional love.
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Deleted
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Post by Deleted on May 13, 2013 0:12:09 GMT -5
I had my kids pre-injury...they were young. I think that it's been great for them...they aren't whiners, they inevitablly root for the underdog, they aren't shallow...they don't make assumptions or judge people by their appearance or physical condition as much as other kids typically do. I thiink that it has enhanced their capacity for compassion. I could list some of the things that I/they have missed out on due to my disability...but it's miniscule compared to the positive things that have come out of it.
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Post by matisse on May 14, 2013 23:09:38 GMT -5
I could list some of the things that I/they have missed out on due to my disability...but it's miniscule compared to the positive things that have come out of it. Interesting, because I come out the opposite way. While I do not think my kids have suffered in the slightest compared to others, I think that net, things would be a whole lot better for them if I were not in a chair. Not even a close call. But maybe it's just correlated to my thoughts about myself. I see wheelers who are grateful for the chair for various reasons. I am not, I hate it and have always thought I would be a better person, all around, if I were not in a chair.
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Deleted
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Post by Deleted on May 15, 2013 1:31:16 GMT -5
Your opinion always interests me Matisse. We are very similiar in some ways, and very different in others. What things specifically...would be better for them? Are you talking activity-wise? Or you would be a happier person/better Dad if you weren't disabled?
Like you, I am not grateful for my chair(or amputations, for that matter) If I could go back in time and take that fateful day off from work...I certainly would.
As far as being a ''better'' person either way... I'm not sure. I have a 'before and after' perspective that some of my comrades with congenital/and or birth-related or early childhood maladies don't have. I was a total Type A person before, but have been forced to be a much lower-strung person...with a lot more patience. I think that was a beneficial change for my kid's sake. Would I have been willing to sacrifice my able-bodiedness(is that a word?) for more patience? Hell no! But I didn't have a choice...I adapted to it
Prior to my accident, I worked as much as 16 hours a day...sometime 7 days a week. Being forced into semi-retirement, and getting my priorities straight was a good thing...for me. I was able to spend substantially more time with my kids.
I think that facing the adversity that I did...not giving up...and still having a positive outlook on life...making the most of every day. Well, that's built character in me...and I think that has been a good 'life-lesson' for my kids.
I think that it would be interesting to hear just what our kids' perspectives are...maybe we would be surprised.
In my statement that you quoted... I simply can't think of too many things that my kids have missed out on due to my disability. I guess I should probably clarify the second half of the statement. Having a disabled parent, to me...is a neutral thing. How I cope with the disability...is the key. If I am indifferent...I survive...and go throuh the motions...it remains neutral. If I become bitter, angry, and withdrawn...obviously it's a negative thing. I hope that my attitude, perserverence, and other things...despite(to spite) my circumstances and physical condition... Will encourage them in whatever trial and tribulations that this life brings their way.
My life isn't all rainbows and unicorns... I have always been real with my kids. They have seen firsthand my heartaches, heartbreaks, and failures... but at the end of the day...I'm smiling,and the next day...I strap on my arms and go after itagain . I don't know what else to do.
I would be willing to bet that your kids see and respect things in you that are disability-related.
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