I got a call a few weeks ago from a woman in my area. She'd read an article the local paper had done about Max and his stroke. She had a child with special needs of her own, and wanted to discuss our school district; we finally spoke the other night. Soon I'd told her all about Max's challenges and needs and I learned about her daughter's. By the time we hung up, I had a new friend.
When people ask what's up with Max, and they do, I am pretty open about his stroke and what happened to him because of it. I've always been that way, although early on in his life I had concerns about his privacy. Was it fair to Max to disclose details about his disabilities? What if as a grownup posts from his past—posts me, his own mom, had written—were there to damn him from being considered a "normal" adult?
Ultimately, I decided the positives outweighed the negatives. First, I do not want Max to feel as if his disabilities are something to be hidden, but something that are a part of who he is—every wonderful, spectacular, scrumptious, miraculous inch of him. In talking about Max's challenges, I also get to compare notes with other moms and learn things that could do Max good. And I can help moms with typically-developing kids understand that children with special needs should be treated just like any other kid. The one exception to all of the above is work, where I don't tell people a whole lot about Max. I'd never want a colleague to view me through a sympathy-tinted lens.
Dave is similarly straightforward about Max, except he doesn't get into discussions with friends, neighbors or whoever about him in the way I do. It's not that he doesn't want to, it's that people are less likely to ask him the questions that they pose to me. And he is generally less likely to discuss child rearing. If he ever turned to a mom and said something like, "I'm curious, what time do you put your kids to bed?" or "Do you think it's OK to let your little girl go the mall in her pajamas?" I'd be all, "WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY HUSBAND?!"
So, how open are you about your child's disabilities?
We are very open about the disabilities that Connor has-- my blog is proof of that.
ReplyDeleteI've always felt that ignorance is what leads to fear. If people don't have the chance to understand the whys and wherefores about my son, they are much more likely to look on us with pity or with intolerance. If Connor gets to the point someday where he wants me to stop talking about him, so be it, but in the meantime we'll continue to educate as many people in our community, as well as family and friends, as we can. That's partly why I do those Medical Monday posts.
I think the key is to present the challenges our children face in a positive manner; we try and focus on how well Connor is doing in the face of all of the disabilities that are a part of his life, instead of focusing on what he can't do.
We've also met so many wonderful people who have shared their own experiences with us through that openness.
~Jess
When people ask- I tell. Any time we go out we deal with stares and occasionally people make remarks about the drooling or the way Logen walks. I'm just never sure how much to tell, how far they want me to go. We no longer have the CP dx- so my response now is scatterbrained! "Well, he was originally dx'd with CP, and now we are doing more testing." Lately, I go in to a spill about the fundraiser I am trying to put together in hopes of gaining more ideas!
ReplyDeleteMoral is- yes, we are open. If people ask- we tell. Maybe to much. But, when Logen was little, I wanted to know everything in hopes I would get a glimmer into his future. Little did I know we were looking at the wrong DX! (Ok, I had a "gut feeling")
I've blogged about this before---I don't talk about my younger son's issues in front of him. If someone is curious about his impairment (some people have absolutely no problem with asking me questions in front of him like he's not there), I will turn to him and let him share what he's comfortable with.
ReplyDeleteOtherwise, I rarely mention it at all unless it comes up in context in a conversation or at IEP time, or if someone calls me for some information or advocacy help.
I think as my children got older, I grew out of the need to talk about them/explain them/etc. We stopped noticing that Little Guy had a disability a long time ago, because it's just something he has along with his blue eyes and blond hair.
I hope that made sense!
My twin sons were born very premature. In the beginning it was REALLY hard for me to say "special education". Almost painful. Things did get easier along the way. I can almost laugh about this now. I was always involved in PTA and always the only special ed. parent there. If for some reason I said my sons were in special ed. the same thing happened. Silence, then the other moms either looked away or looked sadly at me, until they got to see my sons. I do believe you educate some people. By volunteering and everyone getting to know our family, I believe my sons had a much better experience and were accepted easier. Funny now I am so proud to be involved with special needs groups but I still remember it was really hard to say it at first!
ReplyDeleteYes, I do talk about Emmett. A lot. As to why, I agree with Connor's Mom - and she said it better than I ever could.
ReplyDeleteMy mom was open depending on the situation, if it's in the middle of the grocery store or any other public place like that, she'd keep her answers short. Especially since questions in those situations were pretty, well, ignoarant. If someone called her or asked in a more private or medical setting she'd tell everything. But by the time I was 8 or so I told her to knock it off, yes I would scream at her in public for telling MY business to other people. I personally don't talk about it much because, from my experience, the more people know the more I'm treated different. (I could go on and on about this but I'll play it safe for now)
ReplyDeleteThis is really a great question, Ellen.
ReplyDeleteI am pretty matter - of - fact about Daniel. Most people don't know (or at least don't ask) about his stroke when they meet him. I like for people to get to know him as the intelligent, strong little boy that he is before I launch into my pediatric stroke awareness schpeel. I want him to be seen as a person, first and foremost, and not a walking billboard for stroke awareness. But like you, I don't want to keep his diagnosis hidden and end up making him feel like there's something wrong with him. It's a balancing act, I suppose.
Oh, I forgot to mention that my approach is very much like that of Sarah's mom. The only questions we've really gotten from strangers were when Daniel was wearing his old Benik hand splint or his CIT cast. Most of the questions from strangers on the subway or in the supermarket are the offensive ones, and I'm certainly not going to feel up to giving a lengthy explanation/defense to someone who has just rudely asked what is "wrong" with my child. I'm more open to discussing Daniel's diagnosis when I'm within my comfort circle - with close friends, in the rehab hospital and children's hospital waiting rooms, etc.
ReplyDeleteThere's no hiding the challenges my kids have, so it's not like I can be "less than open" about what's up with them. My oldest is plainly "developmentally delayed" (I just say he is enjoying a long childhood) and "the baby" has CP.
ReplyDeleteWe live in a small town, too, and everyone knows how we came to adopt our oldest boy and everything that's happened to us in the last few years, too, and people couldn't be nicer, to my face, anyway. I don't really HAVE to "explain" very much--because everyone knows. It's the joy (and annoyance) of living in a place where everyone knows your business!
We have always treated Regan's Cp as a God given Talent to share withthe world. It's kind of hard to hide the fact that she walks with a walker. Anyway, she can explain things so much better than I most of the time anyway, and she never needs an excuse for an audience, because she loves the fact that her differences make her the center of attention much of the time. Iwould say we are pretty open book and matter of fact. Regan is 13 now, and absolultely loves to talk about her diability to pretty much anyone who will listen.....it is usually me who mentions all the other things she is about that have nothing to do with her disability.
ReplyDeleteI think you and Dave sound a lot like Jeff and I. Too bad we are a country apart. I think we could be good friends.
ReplyDeleteAnyways, like you, I'm extremely open and willing to talk to anyone at anytime. Jeff is definitely much more less likely to talk to people about CP but he will. He just doesn't want anyone to treat her differently because of it.
Pity the person that asks me about Clayton's health--I start rambling and never know when to stop! When I notice their eyes glazing over I snap back to reality and realize not everyone wants to know the extreme details!
ReplyDeleteBut I do see it like you do--it's a part of his being, so definitely don't hide . . . I say the more awareness, the better.
If I know you then I'll be completely up-front and honest about Charlie's condition. He's young, though, and most people just think he's sleepy and I don't bother to explain it to them. I don't owe the whole world an explanation. If I am discussing his disabilities, though, I'm straight-forward and don't mince words. He doesn't need to be embarassed.
ReplyDeleteAs my daughter gets older and her special needs continue to become less and less of an issues (SPD, once severe, now mild to moderate), I allow her to take the lead in answering questions. My daughter is also adopted, so we purchased "The W.I.S.E. Up! Powerbook" last year, which teaches adopted children different strategies for coping with adoption questions. Interestingly, it's helped her when it comes to questions about her SPD, too.
ReplyDeleteIt completely depends. With good friends and family, I will answer almost any question. With strangers and acquaintances, I give shorter answers.
ReplyDeleteIf someone asks a rude question, I will evade the question. There is one person (at church, no less) in particular who is only interested in the baby's intelligence level (like you can test for that at one year old anyhow) but doesn't have the guts to ask the question, so I change the subject and leave.
I tell people who ask but I don't seek it out either. I am starting to hate talking about it because as soon as i do I get the pity look, and I hate the pity look.
ReplyDeleteI'm torn about this. I stared handing out cards about Nathan, and people seemed to respond well. However, after reading "Disability is Natural", I'm wondering if maybe I should not say anything. Snow advocates just changing the subject, or saying something short and polite. I don't know. It's interesting to hear what other people think. While I make up my mind, I'm not handing out the cards, I will say something brief if someone asks, otherwise I don't volunteer any info!
ReplyDeleteHiding leads to ignorance and fear... I agree 100%. My disability is hard to spot, unless I was reading something, or your looked at me and seen my eyes move.
ReplyDeleteThere is a time and a place, short replies work for most. With my judo students (a class of 14, all ages), I've been very open, in fact I can't recall one student ever asking me abut how I can see... ever.... until I started using my white cane because of O&M training.
Then I tell them, how I see, and what I see. Most think it's pretty cool they know a legally blind sensei!!!...
Our club pen-pal Cole has CP... We talk about him too, and I field as many questions as I can, if I don't know... I shoot off an e-mail, and ask him! They love my updates about Cole's progress, and what him and Skilled Companion Dog Ilia are up to.
Don't hate or hide your child for who they are. Field the questions with in reason... I never knew kids had strokes, till I started reading about Max, and others.
People can be "blind" (legally), and still see, but not drive... :-)
I'm open, as you can tell. But I'm open about pretty much anything. I focus on what she's learning and doing, not what she's yet to do, and I have a positive attitude about being a special needs mom, most of the time. I, too, hate the pity look. And heaven forbid you ask me what's WRONG with her. That just pushes a button.
ReplyDeleteI am very open and tell everyone my blog shows that as well as I want to raise more awareness about PEDIATRIC STROKE too:)
ReplyDeleteI am preaty open about my cp and nld it is a good thing too so people can learn about nld
ReplyDeleteI've been very opening from the minute Tristan came into this world 12 weeks too soon.
ReplyDeleteAt times I don't feel like I need to explain his situation or explain why me or his father do certain things.
I believe other children need to be aware that some children may not be "just like them" but they need to learn to be respectful and know that God put that child here for a reason.
The postive stuff will out weigh the negative.
I am very open about Alex's disabilities. In my mind, if someone has taken the time and thought to formulate thoughtful questions about him, if they are curious, concerned, I share. They and he can only benefit.
ReplyDeleteI am a young adult with Asperger's Syndrome who is also a psychology student. With the general public, I find honest but simple answers work. For instance, I get confused about where to go in big lineups or crowds of people and others will sometimes assume I'm being rude. In these cases, I will often say, "I have a learning disability which affects orientation in space. Could somebody please tell me where I should be standing?" On my blog, or with people who deal with me on a daily basis, I am much more open. I don't see any point in being ashamed or hiding it and it allows me to ask for help as needed. I also want people to let me know nicely when I have said/done something socially inappropriate so I can learn for next time.
ReplyDeletei'm very open about my son's.... probably too open at the beginning because i was so determined to NOT be ashamed and now i've calmed down a little and gotten more discriminating about who i tell what to.
ReplyDeleteI was born with cerebal palsy and mero fibro matosis type 1 and I didmt walk or talk for the first 3 years of life my right leg is consitered paralized but dont give up hope I'm on my middle school track team and run 600 too 700meters a meet and am in vollyball and basketball the only way u know I have cp is my leg gets tiard and spazma af yet I run for awhile
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