A few years ago I worked with The Land of Nod to create a beautiful and accessible bedroom for our two oldest girls, PSP and Lamp. The Land of Nod was so amazing to work with and the room has been one of my favorite spaces in our home ever since. Additionally, The Land of...
I put out a call for spotlights on Instagram this past week and have already had a great response! I’m excited to get some new spotlights out to you ASAP. It’s always a lot of work, but really the best work I do here on the blog. I can’t wait. I’ve had a super lazy...
Thank you Miggy, read many of your posts for last couple of days- amazing and very educational. You are an extraordinary writer, and I thank you so much for your perspective!
The funny thing is that I clicked on your blog by pure chance from Pinterest picture of one of your craft projects (feather stamped throw). While I think it's very stylish throw, I didn't have intention to go to your webpage as I typically don't do this kind of DIY. But somehow I clicked the wrong button…
I love your suggestions how to try to avoid simple pity and try to focus on the things the special needs and other children have IN COMMON.
I would like to let you know (apologise if someone else have brought this topic already to your attention) that here in UK we have quite a few excellent shows BBC- CBBIES (public TV) featuring special needs children alongside their able bodied friends or/and siblings doing “normal” stuff.
My favourite show is “Our Family” which follows the lives of 8 sets of young children and their families. Typically the program doesn’t explain what is the child’s illness (“whats wrong with them”) but focuses on the things they do in everyday life (e.g. baking cake with granny).
There is also hugely popular Mr Tumble featuring children with various disabilities in each show (I must admit I don’t know well tbis one, but my son was watching this at the childminders), and “Melody” has a little girl with a visual impairment as the main character. And a few more.
I don’t watch live TV much- we use Iplayer only, so my knowledge may be quite fragmented, but I understand that there are at least two CBBIES presenters with visible limb differences. In my opinion this is just amazing because next time my (no special needs) 4 years old child see someone like this in real life he will know that they just look like that cool person in TV…
This past January I attended Alt Summit (a blogging + design conference) in Palm Springs, California. Shortly before the conference a photographer named Lindsay of Wild Wonder Photography asked people in the Facebook group if they’d like to do a photoshoot with some vintage style frocks she was bringing. I said YES. The Saguaro Hotel...
I know this doesn't directly answer the question (although I don't think it's vain to have pictures of yourself taken or even hang them in your home), but I do think that it's important for women to take pictures with themselves in them. I love to look back at pictures of my mom throughout her life, and not just pictures with me in them. And I love having pictures of my spouse. I'd like to assume that he feels the same way and that someday my kids would like to have pictures of me, too. So if nothing else, do it for your kids and your spouse. Wasn't there some thing on instagram a little while ago that was #getinthepicture? So important. ReplyCancel
Agreed! It is definitely important for women, and I would say specifically moms, to get in the picture. And it's a struggle. Maybe because as the house photographer I'm always taking them and not IN them. But I'm getting better at asking my husband to take some of me with the kids and he's getting better at remembering without me asking. ReplyCancel
1. These photos are fabulous and you are stunning. 2. Your girls are going to LOVE these in the future even more than they might already now. 3. Like you, I'm pretty sure I'd never set up a solo photo shoot but do at least make sure to get a solo head shot when taking family photos. 4. I'm pretty shy about even displaying family photos in the public areas of our home (I hang them in the hallway where our bedrooms are – I think this "fear" comes from having house-sat for a month for a couple who had photos of themselves EVERYWHERE…and from like only 2 photo shoots – not a collection of photos over many years). But if you want to hang one, I say go for it! Like I said, they're fabulous and also sure to be a conversation starter 🙂 5. I don't know if I've ever said out loud to someone that I really love a photo of myself. Hm I need to work on that!ReplyCancel
I love these! I'm not sure if I would ever do pictures of me by myself (i've also never even thought of it before), but I love the idea of this being blown up and displayed at your house… especially that first photo. I love the whole vibe of it and it doesn't feel like it's only focused on you (ie. a giant blown up picture of a headshot). I especially think your children will love this as you get older.ReplyCancel
I love to see pictures of my friends – it is so rare though since as moms we are the ones taking them. My mom had a picture of herself as a young bride on the wall at our home growing up and I just loved looking at it. I think your girls would feel the same about those. They are gorgeous.ReplyCancel
I originally featured this spotlight on Celia a little over 4 years ago and have never forgotten her story. Probably because Celia was the first spotlight I did for a child who had already passed and I always consider these interviews to be a sacred and holy responsibility. If you have a few minutes I...
Thanks so much for reposting this! I was alerted by one of Celia's great aunts (we moved just recently, and I have fallen so far behind on favorite blogs…), and found that re-reading early this morning was a good and gentle way to begin Mother's Day. Parenting her memory is one of the only ways left for me to feel like I'm doing my job as her mom. I appreciate your help with this week 😉
Two (significant) things have changed over four years since this was first published. Celia's youngest (healthy!) brother arrived last year. Baby Hank adds so much joy to our family. (Also, Columbus is not far from Cincy: we've got three kind, handsome boys if any of your little ladies ever need a prom date!) And secondly, what began as the first clinical trial for Batten proved to be an effective treatment (slowing the progression of the disease) and has since been rushed through FDA approval and offered across the country. Progress is being made, and hope for a cure is on the horizon. Thanks again for pulling our little girl out of the archives 🙂 ReplyCancel
Well this might have just made my Mother's day as well. So glad it was helpful to you. "Parenting her memory is one of the only ways left for me to feel like I'm doing my job as her mom." I never thought of it like that, but of course. And so beautifully said. SO HAPPY to hear you have another sweet and healthy boy added to your brood. And SO GLAD to hear about the progress with Batten. How wonderful! So happy to read your comment today and Happy Mother's Day to you. XO (And yes, we may need to get our lads and lasses together sometime!) ReplyCancel
Jenni, I hope Mother's Day was as easy on you as possible and that your 3 boys surrounded you in snuggles. Celia was obviously an amazing daughter and that you can use such a terrible loss as a lesson to look at others with compassion speaks to what a strong and kind person you are. Sending you a virtual hug. And Miggy, thank you for sharing Celia's story and for everything else you do through this blog. I've been reading since before Lamp was born and so enjoy your perspective. ReplyCancel
Hi! I thought it would be fun to start a new series where I share some of my favorite things I’ve been enjoying lately. Something to wear, something to read, something to watch, something to eat. Feel free to leave any of your favorites below and I’ll check them out! wear: I’ve been on the...
Hi Miggy, I really love your blog and admire you for so many things you do. One thing you wrote today struck me as odd (although I can certainly see what you mean): reading fiction as frivolous. I have never thought of it like that, as I see literature as an art form – that might of course make you a better person, but it does not have to. It's just there. (But maybe I only don't think of reading fiction of frivolous because it's part of my job …)ReplyCancel
Yeah, I should probably clarify that as I completely agree that writing is art and completely valid and wonderful and beautiful on its own. I was reflecting on a book I read lately that I felt was just a fun, escapism type of book that a) I didn't love that much to begin with and b) I could have skipped altogether and never felt like I was missing out. I guess that's why I said I want to feel like a better person for having taken the time to read fiction. Which of course is completely subjective as what one person wants out of their fiction (an escape, a mental break) is completely different than what someone else may want from theirs (a moral lesson, a broadened world view). In my defense I did say "fiction can SOMETIMES feel frivolous unless very well done." I certainly didn't mean to imply that on the whole fiction is frivolous, because I certainly don't feel that way! And of course what one person wants from their art (be it reading, music, visual art) will differ greatly from what another person wants. ReplyCancel
A local store very close by and the stockist of the best ever caramel slice, chocolate milkshakes and smoked brinza cheese has recently gone crazy busy because it's chocolate cake got a shout out, from some lady who said it was the best she had ever tried. Crazy. I go there a little too often but had to drive past as the line was out the door. All because of a review by an actress who was living here for a while filming. Her name just so happens to be Scarlett Johansson 🙂 ReplyCancel
What’s wrong with you? What’s wrong with you? What’s wrong with you? Staring. Staring. Pointing. Whispering. What’s wrong with you? Imagine being asked that question on a semi-regular basis. Now, imagine being asked that question on a semi-regular basis, by complete strangers. Finally, imagine being asked that question on a semi-regular basis, by complete strangers,...
I invite you to visit http://www.ellieextraordinaire.blogspot.com to see the book I put together before Ellie started kindergarten this year.ReplyCancel
I loved your book! We did something similar for Lamp when she started school–not a book but we had an educator from a local children's hospital come and do a presentation to each and every class introducing them to Lamp and talking about the same things your book talked about. I just looked up Camp No Limits and we'll have to look into going sometime. There was another camp we were going to take her to, but they moved the age limit back. Anyway, thanks for saying hi!ReplyCancel
Maybe you could try crowd funding the book, I certainly want a few copies to put in our local library and primary schools, i'd contribute if I could get a copy as a reward, that's how I have seen some funding work. Once again a well thought out piece of writing that makes me think. Congratulations and all the best. ReplyCancel
The subject of inclusion has been on my mind lately as I drop my 3yr old grandson off at preschool three days a week. Although ethnically diverse there is virtually no diversity in physical or intellectual abilities. I was talking with the director about this and it has been weighing heavily on her mind as well. The biggest hurdle they face is monetary–they must pay separate staff to help assist any students with disabilities. I've heard this many times before in the public school system as well as watched that play out. There has to be a way of addressing this. Kids are SO accepting if something is just a normal part of their lives. There has to be ways of getting kids together so they can learn about one another and embrace the wide variety of the human condition. ReplyCancel
Thank you, thank you, thank you for this! As an adult with cerebral palsy, This post really hits home. I have a bank of memories from my life. Similar situations. The stares, the whispers, the teasing, the pity. Hearing about your beautiful daughter going through similar situations all these years later, it confounds me. I wish it was different. I wish The experiences I (and others before me) had served as payment toward your daughter (and other children) living without these moments. Alas, all I can say is that I understand. Kudos to you both for being vehicles for change. All the best. -K ReplyCancel
I am a tennis coach and my athletes just happen to use a wheelchair on the court. Most of my players are adults but wherever we go, the questions and stares still amaze me. My daughter grew up around my team and is currently a graduate PT student. Last week her assignment was to go to a public place with her "therapist" in a wheelchair. While at the coffee shop her first text to me was "how do your players deal with the constant stares"? I have no answers but I love your blog and your attempt to educate, educate and educate some more!ReplyCancel
Lamp is exquisite in her peach frock, blowing dandelion fairies to the wind! And I would have to agree with that indeed, she looks like Belle, especially in the photo with her lovely sisters.
I love this post. I've thought how difficult it must be to be thrust into the public square each and every time you step out of your community, I have no personal experience, and can only learn from others, and as you continue to educate, I can try to share and to be better. And I have to add that right from the beginning, Lamp was born with that extra awesome beautiful face, truly! Just like her sisters. 🙂 <3
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Hi Miggy, yes so many instances of people staring and saying rude things. ALL THE TIME. Just yesterday, a Mom told all the kids that she came with to leave to go elsewhere as soon as she saw my daughter approaching. And my daughter loves being around other children is why she was going towards them. Not that she would know how to play with them. She just wanted to be in their general area.
God forbid I take my daughter out anywhere. Why are people so horrible? Did nobody teach them anything about manners and kindness?
Maybe we need a campaign with a catchy slogan, like the one about not using the R word, or the one that says “Nothing about us without us” about people who want a say in their treatment. I'm sure there are more. Slogans are easy to remember.
Mel in Fort CollinsReplyCancel
Love this one. Feel the exact same way. Preparing for next months IEP and Izzy's teachers trying to pull her out of an inclusive classroom more and that fight. This year I've been working on legislative advcocacy as Oregon prepares their 2017-19 budget and looking at the programs they are cutting, meeting with senators, house reps, aides and sharing our stories how this cuts would affect our kids IRL. What amazes me is the ignorance of so many adults in positions of political power that we meet with – how truly unaware and ignorant of what disability is, how varying it is, how state programs help so many children and families and how cutting these programs can break up families, force parents to have to put their children in state run homes because they can no longer physically or financially meet their needs. There are so many obsticles and barriers that no one understands unless they seek to learn more, to understand more, to see differently. I dream of seeing more disabled bodies in positions of legislative and community power. Just as were seeing more women running for positions since this election, I hope to see more disabled faces on our school board, running for local and state elections. I hope, I hope, I hope.ReplyCancel
What? I'm am SO SORRY to hear that. I didn't know they could just pull her out like that and frankly, I'm not surprised by the ignorance of the adults in positions of political power. That's why we need moms like you who KNOW! Yes we do need more disabled bodies in positison of legislative and community power…and maybe even special needs moms. Go get 'em I say. ReplyCancel
One thing I would love to see (this post made me think of it), is follow-ups in SNS. I know you wrote recently how you would read about people with limb differences when Lamp was young and there was a writer with actual limb differences who seemed really extreme in all he said, but now, 7 years later, you get it. For me, in the 7 years I've had Izzy, so much has changed, but mostly I see the change less in terms of Izzy and more in terms of myself and our family. As she's gotten older, understanding ableism, fighting for inclusion in the school and community, after this last election I felt the need to be more proactive and have gotten very involved at the state level with legislative advocacy for programs and laws concerning people experiencing disability. I think it would be really interesting to hear people come back 3-4 years after doing the spotlight and finding out what has changed with them, with their perspective, things that have worked, etc. I'd love to hear how other parents who had young kids are dealing with the transition to school, inclusion within their school and community, things like that. We've changed so much on this journey and continue growing – it would be neat to hear the growing experience of other families who've we've followed in SNS.
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I am also the mother of a child with a limb difference, and I relate to every one of those memories! And it hurts a bit that my parent friends just don't get it, because they don't notice the stares or hear the whispers that aren't targeting their won child. The thing I really don't get about the exclusion and otherness of the disability community is that it is the one minority into which a person can enter at any point in their lives! I mean, you won't grow up as a white person and suddenly become a person of color. You won't grow up as a straight person and suddenly find yourself gay at age 40, but ANYONE can become disabled at ANY point in their life! You may be diagnosed with MS, you may lose a limb in a car accident or do to cancer, you may become disfigured in a fire. This is the one marginalized group that those are aren't part of it actually CAN become part of it! Actually…maybe that is why it is kept so much on the outside. The knowledge that it could be us at any point is so frightening and uncomfortable that it is easier to treat disabled people as entirely "other" than acknowledge that we aren't so different after all.ReplyCancel
We just brought home our adopted son in December. I've been thrust into the world of being a special needs mom. This past week has been brutal. "What's wrong with him?","what happened?", "oh, that's so sad", "can he walk?", "poor thing" after two days at Disney more awkward stares than can count. We were forgotten and stuck on an Amtrak train at the end of the line because no one remembered to come let down the wheelchair lift and the doors closed. When asking on the same train earlier about getting food we were abruptly told, "the dining car is the next car upstairs!" and the conductor walked away.
I'm trying not to mama bear all over everyone….. But geez…. why can't people choose kind? I wish they could see past the wheelchair, scoliosis brace, and full leg serial casting and SEE my son. He's amazing. He's funny. He's smart. HE'S A KID, just like any other.
FYI, There's NOTHING wrong with him. NOTHING "happened", not really so sad because he's pretty great, he's not a "poor thing", nope…. He can't walk, but I'd like to see you try and walk with both legs in full leg 90° Bent at the knee casts and see if that's even a reasonable question. How about, will your child be transferring or remaining in his chair? (And don't get me started on the medical office assistant that told me to have him stand up to measure his height).
I appreciate people wanting to help when it might be truly needed, but don't steal an opportunity from my son to accomplish something. Ryker's starting to want to be a little independent. "Let ME do it.". One of the first times that happened after coming home he was reaching for a fork in a grocery store eating area. He had his hand on the fork. A woman reaches and grabs it from him to hand it to him. I spoke up and said, "thank you, but he's got it and wants to do it himself." She walked to her table and then as she was leaving her grown daughter scolded me, "she was just trying to help, geez….." I choose not to teach my son that he can't do things and has to rely on help. Everyday when he faces a challenge before I offer help he's encouraged to try another way. There's almost always another way. (It's sticking! Just two days ago when something was hard for me he piped up, "try another way!"). My son will learn so much more by allowing him to figure things out. My son does not need "rescuing" because something looks hard for him.
Please don't ask me in front of my child what his treatment plan is. This is especially true if I don't really know you. You as the dollar store clerk that has seen my son two times is not entitled to that information. Worse yet, please don't ask how they're going to " FIX" anything about my Sweet Boy. He doesn't need "fixing."
Wow, I guess that was a bit bottled up….LOL
I was thankful for one sweet mama today. Her daughter was staring….. I'm trying to teach Ryker to introduce himself to kids that are staring. I'm hoping that by breaking the ice in more situations than not it will remind people that he's a kid just like them. I spoke up and rubbed Ryker's head and said, "remember, Buddy, when kids keep looking it's great to introduce yourself.". The mom thanked me. And as we were walking away I could hear her having a great heart to heart with her young daughter. This one…… I'm clinging to this one to remember.
Thanks for this post. I needed to not feel so alone this evening.
Coming down off of an art-making high from this weekend and feeling so good. Creating is life. It makes me feel alive. I really think most people are built with an innate desire to create regardless of whether you typically consider yourself to be a creative person or not. And this past weekend I created....
I love this idea! I don't get a lot of time to create by myself uninterrupted, but I usually try and wake up early on the weekend mornings to get some things done before my kids wake up (luckily they sleep in until 9 or 10). My parents try to have a sleepover once a week with my daughter and I try to turn those into project nights. I also think it's really fun for my daughter to create alongside me, so I try to set her up with something near me so she can watch me working, but do her own thing. Sometimes it's just play-doh, but lots of times its painting on her own canvas while I do some painting.
I definitely want to plan out a create-a-thon of my own… not sure if I'll do quilting or painting yet.ReplyCancel
In the writing world we call them "word sprints" and "editing hell" where you take two weeks and do nothing but work on your novel, either writing or editing. It's a legit thing, especially when you have a deadline, real or self-imposed! My group also does writing retreats for the weekend twice a year, but because of babies I haven't been able to go yet. And there's nanowrimo–in November thousands of people commit to write 50k words in 30 days. I've done that several times.
Personally, I have a huge need to create and to make things. My husband is nice enough to make sure I have enough "alone time" or "work time" each week to sit in my office upstairs and write, or sew, or draw, or scrapbook. Whatever I need to do. I'm currently trying to get in as much as I can before my new baby comes–two more weeks! Actually, in a fit of nesting, I pieced and quilted four baby quilts in the past four months. Kind of insane! ReplyCancel
wow this art work is amazing really.
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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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