funny story behind this picture. It’s been a slow week–as to be expected–we’ve got family coming into town and Thanksgiving preparations are well under way. I love the preparation and anticipation of holidays almost as much as the holidays thesemselves. But one thing I realize I haven’t been doing much of lately, is taking time...
Thank you for having us on the #specialneedspotlight. Hi, my name is Liz and I would like to introduce myself and our family. My husband, Jamie and I have three beautiful, loving and super goofy children. Hayden (10), Sabine (8) and Wyatt (6). We live in Severna Park, Maryland. Our house is always loud and...
Liz, thanks for this spotlight. My 2 sons have severe life threatening allergies to many things. I feel your pain and your constant worry. Peoples insensitive comments make me so angry and even more worried. My oldest son recently went through an OIT program here in Utah for milk. He was anaphylactically allegic to milk and it was super scary for years. It took 5 months to complete milk OIT and now he eats and drinks milk like anyone else. He is currently doing OIT for his last allergy, tree nuts. We will be done in a couple months. I cannot wait for that day when I can worry a little less:). Hugs to you and your family. ReplyCancel
Wow. There is so much is happening in the world and in the media right now that is making my head spin. Election season is upon us, add to that recent world events including the new issues such as do we let Syrian refugees in our boarders? (to be fair, another viewpoint) and if you haven’t heard...
Hi Miggy, long time reader.
I grew up debating politics and religion at dinner every night, encouraged by my faithful Mormon mom and atheist former Mormon dad. Nothing was off limits, everything was on the table. It took a long time to learn to practice discretion (and one brother never really did) and be more selective. Interestingly, in my 40s I've found myself working my way back towards openness and owning my true self regardless of the audience but with less emotion and anger than I used to have. I am a progressive Mormon and a feminist, but sharing my perceptions without the chip on my shoulder (using my discretion to judge when not to share) has let me to believe that I am less alone and less different than I spent my 20s and 30s thinking I was. ReplyCancel
So late on the replies here!
Yes I STILL have problems with discretion…I never say things in a way that suggests that I assume everyone is on the same page with me (one of my pet peeves! I have some family members who will do this a log–start complaining about the President, certain hot topic issues in front of people with the assumption that everyone feels the same way they do. Grrr…) but sometimes I ask questions I probably shouldn't ask and say things that should be left unsaid. I'm working on it. And YES to sharing your perceptions without a chip on your shoulder…it really does make a difference does't it? ReplyCancel
My husband decided to leave the church 10+ years ago when our family was very young. I have wrestled all of these years trying to figure out how to comfortably live in a home that is not unified. I use to live in fear of honest conversations with our children because I didn't want them to be "tainted" with his view points, because that is what we are taught at church. I hate that I feel like there is no where to talk openly and honestly about concerns or questions. When church members discover that he is a non-believer we sort of become blacklisted (strong word, but not sure how to articulate my feelings). No one is openly unkind, but there is always a level of discomfort when spending time with members. We are "those" people..you know the ones that the devil has infiltrated. I have so much frustration over how if a family doesn't fall into the "check off the list of milestones" in the church you become like second class citizens. For example, girls won't date/marry your sons because they choose not to serve a mission. I guess my point in commenting is I so so wish there was a willingness to allow people with different opinions a place to have honest discussions.I wish I had had a support group, that was unbiased, to help me navigate the new world I found myself in. I wouldn't say I am 100% ok with how things have turned out, but I dearly love my husband and am unwilling to allow the difference of opinion tear us apart. ReplyCancel
I'm so sorry you are blacklisted by members in your ward. I feel like this was commonly done decades ago and is slowly starting to wear away…probably depends on where you live honestly. I actually try to have very open conversations with my kids about what I see as the contradictions in our church. I feel like this is one of the biggest problems we have in the church–selling our kids on life/church being a certain way and when it inevitable doesn't shake out that way people start thinking, well what the hell was I doing all that for? I really think it's important that my kids can look at issues and analyze them individually, rather than painting everything in broad brush strokes. And yes, open, honest discussion is so very important. I feel lucky that I have friends and family I can talk candidly about these things with. My husband and I sometimes differ in our views, but we still share them all and I'm grateful for that.ReplyCancel
I've steered clear of Facebook since the new Church policies were leaked and the subsequent pr that followed. It's important for me to personally come to an honest personal view of the policies without reading the opinions, pro or con, of the Facebookers. It's going to take me a while to come to that view I'm afraid. Much pondering and prayer on my part and the policy is still "quacking like a duck" for me. The frustration for me comes with wanting to have an open discussion with other Church members but I sense I will be judged for even bringing it up. As a convert I'm often frustrated by the lack of depth in discussing politics or controversial/potentially polarizing Church policies with other Church members. I yearn for simplicity – love God, love others and be good.ReplyCancel
What a great idea. In this sense FB can be terrible–very extreme on both sides. I will say I've felt lucky to have a few friends who take a very balanced, thoughtful approach to these issues and share them on FB… I have found that to be very helpful. But yes, figuring out for yourself first is a brilliant way to go. ReplyCancel
I liked what you had to say about this – I often want to talk about things to help myself figure them out. I think it is part of that process. I do think with access to so many opinions now days you do have to use discretion as you think and examine your beliefs. I feel like my best thinking "sessions" involve face to face conversations with individuals (not usually groups), personal reflection and writing. It makes me sad to hear when people are afraid to share their questions, thoughts, etc with their friends because they worry about how they will be viewed, just as the previous comments stated…but I know many people feel this way. I always feel that the Prophet Joseph Smith would be so sad to see that in the church today. He was the one asking questions – looking for truth and desperately wanting to know that truth in his soul. I think there is always room for positive (meaning – no name calling or being mean/or unwilling to see another's viewpoint) conversations between people who call themselves Christians or human beings for that matter. Aren't we all here to help each other try to figure out our faith and our paths and to share our experiences with each other? I know there are a lot of things I don't have figured out completely in my mind, but as I do work on them, I appreciate people who let me talk to them freely. I try to do the same for others – even when we have VERY different opinions. I think we all can be part of the solution by not fearing judgment from others as we share our genuine thoughts in respectful ways. I think as we all do this – more beautiful conversations will happen and feelings will be shared and polarizing issues will become less so – as we see each other as people – not stereotypes. I personally feel like often times – the best place for these kinds of sensitive conversations are in small groups or between you an an other person. It just seems like it works best that way (and just another reason FB is maybe the worst place to look to have a convo like that 🙂
I love what Anon said about yearning for simplicity…and I believe it is still there. Even through the loud voices shouting from all directions… It's shining bright. "Love God, love others and be good." That's what life is about. And we are all here to help each other along. And if you ever want to talk, I'd love to 🙂ReplyCancel
"I think we all can be part of the solution by not fearing judgment from others as we share our genuine thoughts in respectful ways. I think as we all do this – more beautiful conversations will happen and feelings will be shared and polarizing issues will become less so – as we see each other as people – not stereotypes." YES to that. And I agree, I think small groups or one on one conversations do tend to fare better in both understanding and mutual respect. ReplyCancel
love this! While I often want to talk about religion (not as much politics) I refrain for the same reasons. I do talk to my closest friends and my boyfriend about religion/politics. We really know each other so if the wrong thing is said, we know where the other person's heart is coming from and we're not easily offended. I wish their was more open-mindedness and discussion about these topics because we all have a lot we could learn from each other.ReplyCancel
I shared this photo and the caption below on instagram over the weekend and thought I would reshare it here in light of the terrible events in Paris and Beirut over the weekend. Everytime I pass under this bridge I’m captivated by this caption… the whole before and after aspect, the who, what, and why...
It's on the Norwood Lateral just as you're about to get onto I75. The individual words, "Reign," "Rapid," and "Misery" can be found tagged in a lot of places over the city (as can quite a few "Reign/Rapid" combos), but as far as I know this is the only spot where all three appear in this specific lineup.ReplyCancel
i am a graduating xavier student and i remember the day i was driving on the lateral when i looked up and noticed the change. when reading the words reign rapid glory, i immediately felt a weight lift off of my shoulders. i was so used to reading "reign rapid misery" and thinking to myself, "yep that's how i feel with the amount of homework, studying, and tests that i have to worry about right now." when i read "reign rapid glory" for the first time, i teared up, and everytime i have driven under the words since then, i have consistently thought to myself that i need a picture of the words. so, thank you for posting this picture. its so fitting that i found your post as im studying for my last finals ever! i was wondering, how did you take this picture? did you take it from your car or did you pull over and take it? id really like this picture! ReplyCancel
i am a graduating xavier student and i remember the day i was driving on the lateral when i looked up and noticed the change. when reading the words reign rapid glory, i immediately felt a weight lift off of my shoulders. i was so used to reading "reign rapid misery" and thinking to myself, "yep that's how i feel with the amount of homework, studying, and tests that i have to worry about right now." when i read "reign rapid glory" for the first time, i teared up, and everytime i have driven under the words since then, i have consistently thought to myself that i need a picture of the words. so, thank you for posting this picture. its so fitting that i found your post as im studying for my last finals ever! i was wondering, how did you take this picture? did you take it from your car or did you pull over and take it? id really like this picture! ReplyCancel
My friend is the one who changed it, Reign Rapid Misery is someone's song on youtube if I remember right, local artists. It sat there during the whole financial crisis of 2009 forward and my friend is the one that changed it last year. I asked him why and he said that he needed to feel better about reading it. I asked him why he used pink and he said that was the only color of spraypaint that he had on hand.ReplyCancel
Well hello Glory Spreader. I never anticipated actually finding out who painted over misery with glory and it's really cool to have that little connection.
In answer to your question, I try to be a glory spreader on this here very blog. As as special needs family I spread awareness of the broader disabled community by featuring a person with disabilities on my blog each week. I interview them (usually the parents) and ask about their special needs journey, what they've learned and what they'd like other people to know about their loved ones or themselves. It's a small thing, but I've been doing it for several years now and have had some wonderful things come of it–mostly people's hearts and minds being challenged and changed (myself included) about what we think it means to be disabled.
Thanks for the inspiration and hopefully you're still on a mission to spread glory–literally or figuratively–wherever you go. XOReplyCancel
ARGH! The second time I’m doing this post today as I just discovered my not-yet-2 year old somehow got into my account and deleted this post! What? She also managed to turn on a youtube Micky Mouse video once unassisted. I’m scared. I hope you’re weekend is off to a good start. Mine (sorta) is....
Hi Heather–not at all. It's from Ikea and it's actually a planter (as opposed to a basket I just turned into a planter.) It has a plastic lining and everything. However, I haven't seen it since one like it since the first time I got it…I was looking for another one like it myself. Good luck!ReplyCancel
It’s been such a long time since I’ve shown any photos of my studio! I’ve been meaning to do this for a while actually. Some of you may remember when I got a crazy hair one day and ripped out the carpet in this room on an impulse. Fortunately B was willing to help me...
Great space, I really like the floors 🙂 Perhaps you could build some sort of wooden "stand" that could support the larger paintings just a bit away from the wall, to make the barn door idea less impractical for you? Love your blog 🙂 perfect mix of special needs, normal everyday family life and a bit of design!ReplyCancel
Hi there! I've been following your blog for a few years now! Definitely one of my favs 🙂 I saw this pillow today on the Oh Joy blog and it immediately made me think of you! I had to re-read this post to double check that your middle name was indeed Mignon… but seriously… how cute is this pillow with your middle name on it?!
http://www.atelieratsuyoetakiko.com/collections/decor/products/double-cushion-tres-mignon-on-milkey-whiteReplyCancel
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The term disability is defined as 'limiting'. You are years into learning and experiencing this disability. Think of how you felt when you first found out; your fears, your concerns, etc. To others, this may be their first experience or knowledge of this specific disability. They might be right where you were when you first learned. I don't think pity is offensive or wrong; it shows a caring heart for others. A child would think not having something they have would be sad. I'm sure most people wouldn't wish for a disability. Isn't that human nature? ReplyCancel
Hi Anon–
I have no problem with the word disability–sometimes it sucks as a label, but it's true. Lamp is disabled. Also, sometimes it's great as a label because this is how we get services, adaption equipment we need, etc. And while most people wouldn't wish for a disability, there are a lot of things most people wouldn't wish for–divorce, sickness, disease, financial ruin, abuse, etc…and if we were to take that ONE part of a person's life and make it the whole of who they were and say we felt sorry for them and how awful…well most people wouldn't like that. I'm not so naive to think that there aren't any disabled children who suffer–some do. Horribly. Some kids experience a large amount of pain and trauma on a daily basis. But that does not typify the disabled experience.
I was starting a longer response, but I found that I was just repeating what I was saying above… I wasn't angry at that woman for her comment, I was trying to educate her. She didn't know better, so I told her. I don't think that's wrong. As I said I don't think she meant to be mean….but Lamp has been on the receiving end of those comments and they are hurtful. In real life. Also, I just don't think compassion and pity are the same thing…especially not as I described above. In fact when I was still pregnant with Lamp and we didn't know how everything would shake it is when I remember someone saying "poor thing" in reference to her…even then it rubbed me the wrong way and I did not appreciate someone already dismissing my unborn child as a 'poor thing.'
And yes we were devastated when we first found out (in large part because we didn't know what was wrong and we didn't know even if she would live) and I'm well aware that many people this is their first experience with disability which is exactly why I do what I do. I want to spread awareness and educate. Which is also why I do the special needs spotlight–I realize MY experience can't speak for every special needs family…but I have learned enough to know there are certain things–like, pity–that are widely not wanted by the special needs world.
Oh boy, this keeps getting longer and longer…I think I've said enough. 🙂 Thanks for your comment. ReplyCancel
Thank you for sharing this. I can now see how I'm accidentally teaching this pity to my kids. We emphasize how thankful we are for healthy bodies and our strong legs and arms, etc… While I think it's okay to do this, it's also important to acknowledge that all people are different and that's okay, no person is better than another.ReplyCancel
Sarah–Totally agree! It IS OK to be grateful for health bodies, strong legs and arms…I sure am. We can't teach about every possible scenario other people might face in life, but when they come up naturally I try to discuss them with my kids. And emphasizing that in general being different is OK is a great way to start. ReplyCancel
Thanks to you Miggy I was able to guide my child through a very special, special needs encounter. A girl I grew up with was visiting with her parents. She has Down syndrome, pretty severe, and something else that growing up would make her unpredictable–like either give you a hug or a punch in the stomach. My boys, 6 years and younger, wanted to know why she talked and walked differently. I was so relieved that I had been reading your blog! We had a brief "that is the way she was born" talk and then looked for similarities–exploring the house, movies ect…They liked going through our DVDs with her and sharing favorites, they opened up and their shyness melted. AND spending that concentrated time with her, well she started pointing out words and reading them to me! Her sister didn't even know that she knew how to. I was always a little shy around her when I was younger (like I said, never knew if a hug or punch was coming) and so I am so grateful that I had this incredible experience with her now. Thank you for all the awareness you spread.
And as far as pity….I teach 4-7 year olds in church and noticed that the coloring pages for supplementing lessons usually have the child in a wheel chair as the recipient of service. I don't think I would have thought twice about it, but a little girl in my class is in a wheel chair. She doesn't need pity. Not that service is pity, but I just want more showing children in wheel chairs giving service and not just getting it.
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Yes, excessive pity is harmful. But feeling/saying sorry that you have to deal with (Insert disability) is saying just that. I do not want this to sound wrong. But somebody saying "i am sorry" doesn't always have to mean pity. Would you choose disability for your child, this or any other? I would not. We deal the best with what we are given. Not dwelling upon it is a choice, good choice. But I think we all can agree that disabilities make life harder. Doesn't mean less valuable or less beautiful, just harder. And having one, of any nature, limits as in some way, like it or not. It can open new opportunities also. Somebody saying "I am sorry you have this" means just that.
I do not know how to put it in words. Maybe when I sleep on it, I will be able add something more reasonable 🙂
Alexandra ReplyCancel
Here's the thing Alexandra… as much as no one, myself included, wouldn't initially choose this for your kid, I also would never choose a disability-free world. And this is where I go back to the fact that EVERYONE has a disability and life is hard for all of us in some or many capacities. I've seen many an able-bodied person I would consider to be much more 'handicapped' than Lamp. We all know people like that.
As far as actually saying you feel bad for someone, I would say timeliness makes a difference…when I was pregnant with Lamp and we were coming to terms with life changing news, it was definitely appropriate to say, "I'm so sorry, I feel bad for this situation, etc." But if someone looked at Lamp and walked up and said that to me know, that would be so inappropriate/offensive. Lastly, I think there is a world of difference between feeling bad about a situation and feeling bad about the person themselves. I have definitely said that I'm sorry a person is dealing with X, Y, and Z even in terms of a disability, but never when it is so directly tied to the person themselves. Like you, I don't know how to explain it but there is a huge difference. Which is why I also think its VERY important for all of us to extend grace and kindness to others. You have no idea how much I have to practice this day in and day out to other people who may or may not know better…I believe in giving people the benefit of the doubt and I do. Often. But when I have the chance to write something here for others consideration, I'll do that too.
Honestly, while I wouldn't have initially chosen this for Lamp, I would never take it away from her either. None of us escape life without major hardship. None of us. From my perspective, this 'hardship' ain't so bad. I'll take it. Yes there are limits, but show me a person without limitations and I'll show you a flying unicorn with leprechaun riding on it's back. ReplyCancel
LOVE THIS! You've hit the nail right on the head, and I think unless you are a parent of a child with special needs, it's hard to understand how it feels when someone says "I'm so sorry" or "Bless her heart" when it come to your child and their special need. While I'm sure it's not meant to be, it very much comes off as being a "pity" comment. Thank you for sharing Miggy! 🙂ReplyCancel
Miggy, sometimes it’s the opposite. People think everything is fine with a kid and it isn’t.
In the blog winklett.com, the kid who looks fine physically is so violent that he can’t live at home.
In the blog specialmommyx2.com, one of the special needs kids has Rett syndrome. The symptoms torture the children day and night so the parents think the only way for their kid to not be in pain is to leave this earth.
My parents wonder why I can’t put my daughter with autism on a plane and go visit them just because they see calm videos of her playing on her ipad. I tell them it’s problematic enough taking her to a playground or McDonalds. Any plane we get on would make an unscheduled landing just to kick us out.
People don’t know. They react on what they initially see. You’ll probably need to keep patiently educating people that Lamp is perfect and happy just the way she is.
This is Mel in Fort Collins. I don’t know how to post this in any way other than anonymous.
Take care, Miggy.
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it's a lot about exposure and education–13 years ago I started raising puppies for the "poor blind people". Um yea… never met one of those! By getting to know those in the disability community and learning more about disabilities my viewpoints did a 180! Oh I still raise guide dogs but I raise them for Jessie, Mike, Becky, Jordan, Maggie…..ReplyCancel
"And even though few adults would ever say that they feel bad for Lamp, many, many people have expressed a sort of equal but opposite point of view, "Oh wow! She's really happy isn't she?" or "Look how happy she is!" Again, I know people mean well but I've heard this enough to know that some people are genuinely surprised that a girl like Lamp should be so happy. "
This made me feel shameful because a few months ago, this happened:
To make a long story short, my mom's pregnant coworker came back to the office devastated after having an ultrasound. The doctor was saying that the baby's legs were too short and that follow-up tests were needed. Follow-up tests that would not be available for THREE WEEKS!!! Needless to say, my mom's coworker was going through an extremely hard time during those three cruel weeks, and when my mom relayed what was going on, I immediately thought of Lamp. I actually sent my mom a link to all of my favorite Lamp posts (to forward to her coworker). My thinking was for the expectant mom to know that even if her baby was born with a limb difference, it would not be the end of the world. She could still have a just-as-beautiful, just-as-precious, and yes—just-as-happy—child that she had envisioned.
Do you interpret this as pity? Because pity does not enter my mind when thinking about your daughter, but "happy" does! (Just as I would associate "happy" with Lamp if she did NOT have a limb difference). ReplyCancel
Christina–
No, not at all. As I said in a comment above: "As far as actually saying you feel bad for someone, I would say timeliness makes a difference…when I was pregnant with Lamp and we were coming to terms with life changing news, it was definitely appropriate to say, "I'm so sorry, I feel bad for this situation, etc." But if someone looked at Lamp and walked up and said that to me know, that would be so inappropriate/offensive."
Pity, empathy, sympathy are sometimes tricky to fetter out and distinguish. The last thing I want from this post–or any post–is to make people feel stressed or to feel really bad about how they may react, behave or even treat someone with disabilities. It was and continues to be a learning process for us. And I certainly don't have all the answers. I try to share these things to help people see things from a new perspective. I think what you did was wonderful and kind. Truthfully this family may not be ready to 'celebrate' their child's differences just yet. They may look at my blog and think, "Good for her, I STILL don't want this for our baby." Such a normal feeling for them and so nice and kind of you to reach out. So even if they don't seem happy or grateful to see my blog and Lamp,you did a kind thing and your heart was in the right place.
And yes I would associate happy with Lamp with or without limb differences as well! 🙂
Hey, I'm Amy!
I'm an author, artist, and disability advocate. I live with my handsome husband and three beautiful daughters in Cincinnati, Ohio.
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Great reminder, thank you! I've been a reader of your blog for around two years now, and I love and appreciate what you do here. Anyhow – I thought you'd enjoy this, if you haven't seen it already.
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"Gratitude is like glasses for my heart". I'm keeping that. Maybe even on a t-shirt. Thank you.