About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram which I shared with them:
© Cristin Lind, 2014. For permission to use, please click here
The crazy diagram is pretty self-explanatory, but just in case, here’s a little more info. In the center, the “G” is our son. It’s the first initial of his name. Around him, “our family” represents me, my husband and my daughter. Naturally, he’s not always the center of the universe, but for the purpose of the talk I was giving, he was.
Around all four of us radiate areas of need. From each of those areas radiate pieces of support (in the “bubbles”) and barriers (in the badly drawn doors).
- Health: Any medical provider or service typically grouped in the medical silo; anything paid for by our primary or secondary insurance; medical equipment; pharmacies and medication–it’s all grouped here.
- School: This is any service that impacts learning or is provided by our school. Physical therapy, speech therapy, and occupational therapy could be considered health supports, but since they’re provided at school, they’re included here. The bus driver? Believe me, when I’m a half-hour late for work because the bus is late, the bus driver is at that moment as important as a surgeon.
- Developmental/assessments: These are the services, paid for by insurance, that support our request for adequate educational intervention. Besides there, these silos don’t talk much to each other.
- Info/advocacy & leadership: These are the folks who tell me what I don’t know, teach me what I need to learn, raise my consciousness, help me lobby for system change, or who lobby with me.
- Recreation & community: When it comes to free time, my son needs help making and creating friendships, finding activities, and having fun.
- Legal & financial: This is kind of funny section. It might give you the impression that I have actual assets. Not quite. But the day I do, I know who to call.
- Support: These are the resources that directly support me, my husband and my daughter when it comes to supporting my son.
The night I sketched out our complex web for the first time, I felt accomplished. I could see all the connections that I was managing. No wonder we had so many piles of unfolded laundry! I also felt called to action by how segmented and complicated the system was. It strengthened my commitment to be an agent for change–and that very night I blogged about it, a blog piece that I believe led to a job offer shortly thereafter.
And I was saddened by how small the area representing recreation was compared to health and school. I vowed to I’d devote some time to fixing that. (It was the reason I pursued the inclusive sports and after-school programs I wrote about this spring.) Every time I showed it to another family, they immediately got it, too, and often decided to make their own.
When I presented this to the group of doctors, they got it. Within a day I heard from two of them who asked if they could share it with colleagues. Something about this spider web of resources communicated a complexity that they were unable to express.
Next I shared it with our own doctors: our pediatrician, some specialists, even a medical student who started following our son’s case. I can’t say for sure, but it felt as if they treated me with a bit more respect when they could see how many balls I was juggling. One doctor helped me prioritize upcoming appointments once she saw what we were dealing with. In one case, one said that they felt humbled to realize that all this time they considered themselves so central to my son’s care, yet there were so many other people in his life who were doing just as much.
After that, the care map took on a life of its own, creating ripples that were unplanned but very welcome. It’s become an effective tool to share with other doctors, providers, policy makers, advocates and quality improvement specialists.
But mostly I want to put it out into the blogosphere in the hopes of hearing from families:
- Have you seen anything like this?
- Do you think you’d ever consider making one?
- Assuming that you would tailor it to suit you, would it be hard or easy?
- Do you think it would help? How?
- If you’re a provider, family member or friend of someone with special needs, what might their Care Map teach you?
Please let me know. How do you tell your story when you don’t have 1000 words?
We have an eight year old special needs daughter and I can relate to the web completely.I think I will try and make one for our family.It will help us ,the school,therapists and potential support systems realize the complexity of the web.It will also hopefully encourage respect and improved collaboration among the different loops.Thanks. Marisa
I hope it works well for you! There are so many unexpected ways it has helped me. Thanks for commenting.
Wow.
You need to teach this to a lot of people.
I might bring it to my first meeting tomorrow as a new board member of our local “Community Living” organization for people with intellectual disabilities. When I get the courage, I’ll try to make my own Care Map. Thanks for sharing your tools, Cristin. -Diane
I do hope to share it with more folks. When you say “get the courage”–what do you think you’ll need courage for? How might it be hard? Let me know if you ever shared it with your group and how it went.
Always love reading your blog.
You’re so nice. It must be what it feels like to have fans. Hope you’re well!
Since you shared an earlier version of the Care Map idea I was captivated. I began to sketch out my own care map for my daughter Ashley. I found (rather quickly) I couldn’t do it on one page… no matter how small I drew the circles. So I decided to do it on a power point. The first page with Ashley in the center has its major category circles on it then slide after slide it now is growing in its explanation in details of each category.
I have been playing with sounds-as the slide pages change, and words flipping as you click on each line. It is becoming quite a project! Part fun and a part overwhelming.
But most of all it is becoming larger than life in a visual of what it takes to care for Ashley, to manage all it’s moving parts, to be Ashley. There are slides that need more than is currently in place, so we have to get moving on that. There are also slides that have solid things in place albeit multiple strands of care-connections.
Most of all it has been a revelation of what we (and many parents) have to think about, arrange, plan, seek, gather, investigate, and connect with/to on behalf of our loved ones.
Planning and managing a meaningful and full life is a lot of circles, a lot of pages on a slide show. But for us, it has become a necessary tool to lay it all out, to draw folks in, plan and have the enormous impact of a visual on her behalf.
While the medical, educational, legal, advocacy and leaderships parts have good connections I am realizing that our own extended families are not really “in-it”.
We have been doing such good job we have neglected to draw in those natural supports that love us, love Ashley. I am already planning a big family gathering (in my head) to present this to my family and begin to ask them— to commit to be an active care connection on one of the slides.
It has been pretty transformational in creating a care-map for Ashley. Can’t wait until it’s done, and to bring closer those who can be more intimately active/connected to Ashley and understand we need them-she needs them.
Thank you Cristin for creating a tool, not only to lay it all out, but to also create the possibilities to draw more in.
To think that I could offer anything to someone so experience and thoughtful is really humbling. But mostly it confirms my belief in the power of the family-to-family connection. We teach each other things, share, build, swipe and improve. I’m excited that you are finding it fun. We all need more energy around this every once in a while. I’m also so excited to hear that you’re thinking about bringing your extended family in. How huge. How amazing that this tool has the potential to lay things out in such a way that we can see things with fresh eyes and share it with people in a way that makes sense to them–I’m really moved.
I have a special needs son who is 17 and seeing the care map truly brings everything into perspective!! I can’t wait to make my own chart, not only to help me prioritize (sometimes feel like I am spinning with everything that has to be done) but to be able to present it to others who don’t seem to ” get it”! Thanks!
Please feel free to share when you’re done! I’d love to see it.
I train people to be foster parents in my area and I would love to use your care map in my training. While not quite the same as your situation, many children in foster care require a great deal of managed care by foster parents. I think it’s important for them to have a tool which can help them map out the needs and resources for the child. I also think it would be useful to share with social works so they can see just how complex a job it is to be a foster parent and manage the care and needs of foster children.
Yes, please do feel free to share! It’s a very empowering process (although it can feel overwhelming too, I’ll admit) and keeps things kid- and family-focused.
Thank you for sharing! I have a 7yr old special needs child. People are clueless as to the complexities and time involved. Family is clueless. My son is willingly the center of my universe and our other son has been amazingly patient despite the impact this has had on what his expectations and normalcy are at present. After doing this full throttle for so long it is not for the faint of heart. My son is a sweatheart, compassionate, loving and smart. Unfortunately, the parenting process is a solitary act given the lack of compassion and understanding of others.
I know the solitary feeling you write about first hand. Have you had any luck connecting with other people in your situation? Once I got connected with other families, things felt so different. I still treasure all my friendships, but the ones with other special needs parents see me through some intense times–good and bad–in a way that no other relationship can. Here was a post I wrote about an interesting study that researched the impact of different relationships on parents of young children with disabilities: http://durgastoolbox.com/2012/09/14/relationships/
May I post this on facebook.com/bipolaradvantage with a link to your’s? It is a very important message for bipolar people and those who love and support them.
Absolutely! Please do. Thanks for sharing it.
This map is such a good visual representation of what it’s like living in a family with a special needs member.
I grew up in the 80’s and 90’s with a disabled younger brother. Surgeries every other year, long stretches of intense life threatening illnesses and hospitalization, and around the clock home care were our family’s routine. Back then sib-shops and other sibling resources were very uncommon. As a teenager I befriended the PCAs at home as they were usually caring and sympathetic.
What I’m wondering is: wouldn’t it be neat if siblings made their own care maps? A big part of their psyche is devoted to care for their sibling. It would be good for them to see their own needs too, just as important, on their map. The map could show how the sibling sees their own world, hopefully not dominated by their sibling, but including some of their sibling’s huge presence.
Maybe sib shops are already doing this, and if they are, that’s great!
Thanks for sharing your map. (I love that care providers realize the bigger picture! 😉 )
(I could swear I replied earlier today, but let’s just say that things on the blog are a little busier than usual!) I really appreciate your idea–I think I will do it for my daughter! I also am so grateful to have siblings like you share your experience so that I can be a better mom to my daughter. It really really helps me see her perspective and reminds me to carve out time for her. Thank you so much.
Love to use your care map in my classes. I teach in a school of education and students preparing to be teachers really need to see what parents must juggle. Is there a way I might get a clean copy?
I sent one to you directly. Let me know if it doesn’t arrive. Enjoy!
Hi Cristin-
I am writing from The Daily Mail’s office in New York.
We are interested in doing a piece on your child care map and we would love to include your graphic. Are we able to do so? We would be more than happy to credit and link to your website.
Please let me know if you have any questions.
Thank you-
Kaitlinn Van Ert
Assistant Photo Editor
Sure! Just curious, would this be in the print edition or online?
Hi Cristin-
The photo request is for online use. Should we just credit Courtesy of and then your name?
Also- our reporter is curious to see if we might be able to include your photo.
Please email me if there are any issues with this,
Thanks!
Very cool. I’d totally make one of those.
And I’d totally read it. Good luck!
This is amazing! I teach at Marshall University, and in many classes we deal with the information literacy process (finding relevant, reliable information and using it in an ethical manner). In information literacy as well as in the writing process, one of the most important first steps is to get a handle on your subject. Brainstorming in various forms is an important tool. Your map is an excellent example of that, especially for those of us who are visual learners. With your permission, I would like to link to this with the following description:
“One of the first steps in information literacy is to get a handle on the subject you intend to research. If it is an assignment from a professor, do you understand the scope of the assignment and the information you need? If it’s a subject you plan to cover in a news story, do you have focus? Brainstorming allows you to expand and/or narrow your topic, and there are lots of approaches to brainstorming, from simply writing ideas in list-form, like a grocery shopping list, to a more visual approach, like mapping, mind mapping, webbing or clustering.
Personally, mapping/clustering is my brainstorming-aproach-of-choice. To some degree, I’m a visual learner, so perhaps that’s why this approach just works for me. Below you will find a link to an excellent example of mapping to get a handle on the full scope of a subject, in this case a parent’s experience of what is involved in raising a special needs child.
Gabe’s Care Map: Cristin Lind, Mom, Illustrates What It Takes To Raise One Boy With Special Needs
http://www.huffingtonpost.com/2013/01/18/gabes-care-map-special-needs-children-caregivers_n_2469564.html
Original source: (Cristin Lind’s page)
Durga Tool #9: My Care Map, or the picture that tells a thousand words
September 19, 2012
http://durgastoolbox.com/2012/09/19/durga-tool-9-my-care-map-or-the-picture-that-tells-a-thousand-words/“
By all means, share and respond. Thanks for all of your thoughtful comments. I wish I kept the mind map I did last month to plan for Christmas. It was funny!
Hi Cristin
Creating a wonderful mind map has taken the understanding behind dealing with this difficult issue to a new level. I am an orthopaedic surgeon working in this area and with your permission would like to introduce it to my colleagues. As the message gets out, people will be able to use it to in their own way to help them and us become better at what we do. Best Wishes.
Abhay
Please feel free to share it! I’m happy to answer further questions too if they come up. Thanks for being willing to share a patient and family-centered perspective.
I was wondering last night, thinking about the varied interest that this blog has sparked, as to the best way to get your excellent idea as a resource to all the people who could benefit from it. I have been to the AACPDM -a large meeting run annually, there were delegates there from different fields and degrees of involvement in this area. Do you think it would be a good forum to tell people about your work? Just a thought. Cheers
Abhay
Sorry for the delay–there’s been an avalanche of activity on the blog and I’m having a hard time keeping up with it (and the laundry!). AACPDM looks great. I’m working on a strategy to roll this out with a pediatrician I’m partnering with this on. We did present it as a poster presentation last fall at Harvard Med School’s Primary Care Innovation Center’s annual conference: https://primarycare.hms.harvard.edu/events/2nd-annual-innovations-conference. More publishing to follow, focusing on how to use the tool to support authentic family-professional partnership.
Hello Cristin. I was really moved by your care map. I work for a family resource center that provides support, advocacy and resources to families of children with diverse abilities and believe this would be a great teaching tool for parents who have just learned their child has a special need. I was wondering if we could use it for our IEP/IFSP trainings. We especially focus on parent-to-parent support and your wonderful map can help other parents understand that they are not alone.
Best wishes to you and your beautiful family!
Please do share it. I’m happy to do a webinar or answer questions if that’s useful. Though it’s pretty self-explanatory!
I am new to your blog but can completely relate. My husband and I feel like ‘project managers’ – all coordination for our son’s care MUST come through us. I love your pictorial – and how it highlighted areas that need more focus. It is so true that a picture is worth a thousand words – and I think you spoke several thousand in your pictorial!! Thanks for sharing.
I used to think that I wanted someone else to do the care coordination for me. Now I realize that I SHOULD be the one doing. Of course, I want it to be more efficient (less time wasted on silly things) and more effective (connecting people who need to be connected). I think this care map has helped me to do that. Let me know if you do one of your own!
I work with many who would benefit from better understanding the true complexity and breadth of Gabe’s support network. I’d love to share the map to help them see beyond their silos.
Please do feel free to share it! I’m happy to answer questions too if any come up. (Will you be at IHI in Scottsdale in Apr? Feel like we could have a lot to talk about.)
I haven’t gone in several years but meeting you gives me cause to reconsider. Discuss via email?
Yes, let’s talk off-line. I’ll email you.
Thank you for putting together this caretaker chart in such an organized, color-coded way. I’m sure all parents who walk in these shoes appreciate the visual aspect showing the entire circle of connections that help our kids. Bravo!
Thank you Peggy!
I would love to connect via email, as a mom who would probably well served to design her own care map for my daughter. May I have your email?
Just sent you a message.
wonderful…. found this via Huffpost. Special needs kids grow up and parents age. My intellectually disabled 54 year old younger brother has moved 250 miles across the state to be near me this past year. I now manage 2 households, oversee and supplement his support services. We are still in transistion but no longer in a crisis situation. You’ve presented a useful map and technique for us visual types. Namaste
Thanks Connie. Do you know about the Sibling Support Project? It sounds like you’ve got everything under control, but they can be a great resource for people in exactly your situation (as well as siblings of all ages of people with special needs). http://www.siblingsupport.org/
no I didn’t know, thanks for the resource link!
I am a Systems Engineer and am very much impressed by your Mind Map of the issues that need to be addressed to take care of a child with special health care needs. You may want to expand this Mind Map using the free software tools into a Concept Map and follow it with a System Dynamics Model to handle the dynamics of the changing world of a growing child.
Believe me, we’re talking about it! Thanks for supporting the idea. At the same time, there’s something easy and real about the hand-written tool. It’s nice to have choices.
A handwritten sketch or doodle should be the first tool to capture once initial thoughts. However, the handwritten tool becomes very limiting if one wants to develop and refine these thoughts further. This is where the software tools come into their own. The Concept Mapping Tools can be obtained at (www.cmap.ihmc.us) and a free Systems Dynamics Tool – Vensim PLE for educational purposes can be obtained at (vensim.com).
Stealing your idea for a presentation for my autism class. I want other students to see just how much goes into raising a child with special needs, and how many people impact his life. I will make one for my son, though, not steal yours. Just borrowing the idea.
I call it “creatively acquire.” Seriously though, I’m putting this and myself out there so that the idea can spread. Please feel free to share, steal, borrow or swipe. Thanks so much for doing it!
Hello…. this “map” is astonishing… instantly one “gets it” . I have a friend who for the past 1.5 years was primary care giver for her husband who recently passed away ( right before the holidays) … in speaking with her it seems as if her life is now deflated and she somehow feels that she did not do enough … nothing is further from the truth. I am going to be seeing her again soon and I think a huge piece of paper tacked to her wall and a few colored markers will help her heal when she “sees” all she went through…. Might I please share your map with her? If she agrees, I will be happy to send you a follow up picture. Thank you for sharing and for never giving up.
Thanks Elizabeth for sharing and for thinking of your friend. One thing the story wasn’t able to share is that for several years, I also cared for my dad who eventually passed away two years ago. I still feel like I could have done more for my dad, although that feeling passes with time. Chances are no matter how much “documentation” your friend gets, she will still feel like it wasn’t enough, at least for now. Ultimately, we must realize that doing what we did do was exactly the right amount. It can also be helpful to begin to help others in their memory, if it feels like that would help.
I facilitate all kinds of workshops on visual communication and I’m so excited to learn how well it has worked for you in the real world! I also have an interest in complexity theory and this illuminates some thoughts on the practical level. Huge thanks for putting this out there. I’d love to blog about it as well. Rock on C!
May visuals be with you,
Amanda
Yes, Edward Tufte would be proud! I am a really visual person. Feel free to use this if it’s ever helpful. There are other dimensions that could tell an even deeper story–watching it change over time, etc. Next up is a way to show unmet needs.
Hi Cristin – Thanks very much for your posts. Very inspiring. May I share your diagram with a couple friends at Seattle Children’s Hospital? They may find it very useful. If you wouldn’t mind sending me your copy, you could email it to craig@xtensiondesk.com Good luck to you and your wonderful family.
It’s on its way! Please do feel free to share and spread.
Cristin (& all other parents of “Angels on Earth”),
I am a Pediatric Physical Therapist & am honored to be invited into your families. A mother shared this with me many years ago. I thought you may appreciate it:
You know you have a child with special needs when……….
You compare ER’s instead of grocery stores.
You compare your child’s oxygen saturations.
You view toys as “therapy.’
You don’t take a new day for granted.
You teach your child HOW to pull things out of the
cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that’s speech therapy), smear ketchup all over their high
chair (that’s OT), or throw their toys (that’s PT).
You also don’t mind if your child goes thru the house tooting a tinwhistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two. You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are “in denial” by at least 3 medical or therapy professionals This makes you laugh!
You have that incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when they’re child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP,etc.
You keep your appointment at the specialist even though a tropical storm is raging because you just want to get this one over with…..you waited 8 months to get
it…..and besides, no one else will be there!
Fighting and wrestling with siblings is PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full-page public notice in the Washington Post.
When theDoctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started
walking last week.
Her medical file is two inches and growing.
You have a new belief…..that angels live with us on earth.
Liesa
I don’t know if our kids are angels, so much as kids! Your list is one I’m sure lots of people could relate to. Thanks so much for sharing it.
Your chart is my life 🙂 I have two kids with special needs (although neither with autism) . . . and two with needs. I too am in Seattle. Love too that I see Sibshops on there. The more I look the more I love both your post and your mind map. I need to follow your link to the other blog about it, so not sure if it is mentioned but the people that now “get it” hopefully also see that every bubble has paperwork with it. My DH (darling husband) sometimes doesn’t understnad why there is always a huge pile of papers in the kitchen. Our plates really are full, as we try to keep all the bubble afloat. Looking forward to following your blog 🙂 (PS, your post came Via a friend in London)
Wow, thanks for commenting. Love hearing how our paths circle the globe. And your comment–“Every circle has paperwork in it”–that’s absolutely true. And there are probably twice as many circles that don’t show up here (also with paperwork) that went nowhere!
we’re getting ready to take our motley crew to hike for a few thousand miles, as part of an effort to demonstrate how capable our kids are, despite their differences. We are pulling off our mind map for a bit 🙂 looking forward to reading more, and love your goddess.
That sounds wonderful! I always dreamed of doing that. Let us know if you hike through Massachusetts. Have fun!
We should be in Mass mid July. Am coordinating meet UPS with families with kids with special needs along our hike. I’ll try to let you know if something pops up in western MA. You must be getting tons of hits here today after the huffington post piece (just came across it :). The more I read of your blog the more I identify with you and your family. I dropped out of my PhD program when the twins developed life threatening complications, and We already had a daughter with a genetic disorder. I was studying early childhood special ed, focus on parent education and advocacy :). Keep up the great work. Nothing but respect for you and your family. <3
Hello,
I am a(n) (older) nursing student and would like to share your care map with my fellow students. Thanks in advance.
Martine
Absolutely! Please share.
Hello Cristin,
I am usually invited to speak to a teacher education class for future special ed teachers. I would also like to share your map and your article with them. As a parent of a special needs person (now adult) as well, I can tell them what it is like, but I think if they see your map and read your article, they will have a clearer understanding what just what it takes to raise a special needs child. Thank you for your time.
Barbara
Absolutely–please feel free to share!
My son has special needs and has a single plan of care meeting in a few weeks at school. I would love to show all 15 of them how they fit into the bigger picture. Also we just got a new bus driver who is causing the entire family much grief… Basically she is not a safe driver and her attitude is bad… School principal thinks I am over reacting…I like that this map not only shows the incredible number of people we juggle, but also how each and every one of them must be managed, responsible and functional. Would be cool to have a living map with red, yellow and green blinking lights :))
Sharon, the Care Map can be helpful in establishing your credibility with others; I have found that professionals accept my assessment of the situation if I’m organized and clear. There are a lot of other factors that contribute to a good partnership but definitely try this out if you think it could be helpful. Good luck! (And I agree, a bus driver that you don’t feel good about is really stressful!)
I am a parent of a special needs adult child. I also teach pre-service teachers (general and special education) about an overview of special education. We talk about many types of disabilities and all of the services that they need. I do my best to make certain future teachers are aware of what parents deal with – I would like your permission to share your story and show Gabe’s Care Map to my classes.
In appreciation,
Anita
Yes, Anita, please do share. Thank so much.
This. This I like.
After my son’s diagnosis, I started keeping a binder with all of the information I needed inside of it. This soon grew to two binders, then five. I have one packed binder just for various assessments done by doctors, schools, specialists, etc. Another is dedicated to dietary needs and medication. I have a binder in which I chart the words and phrases he uses throughout the day (he is pretty non-verbal for the most part, and I want to track his progress). One is for physical development and info on physical therapy equipment, and one is a photo album. 🙂
I hear what you’re saying about recreation. I had him enrolled in gymnastics for a few years, and was told that once he turned five he could no longer join the class. They didn’t want to deal with a PCA helping him. My son was inspired when he watched the gymnastics competition during the summer Olympics, and I feel like he is missing out on something he could learn to do and enjoy, with patient teaching and lots of practice.
Keep up the good work!
I can totally relate to the binders. We have many. Their contents get moved out to make space for new stuff and put in a filing cabinet in the basement. It’s growing! Keep at it with the rec stuff. My new attitude is that most things have to be invented by us. It’s work, but also fun. With time, we find allies and supporters, and in the process our kids get what they need. And you too–keep it up. Thanks for reaching out.
our binders have become bins . . . and an entire file cabinet. I’ve started photographing certain pieces and accessing the photos from my phone (instead of moving things around or taking things out of the binders – then I misplace them ugh) , or carrying the whole big binder with me. I have ben know to show to Dr apts and IEP meetings with multiple bins I wish I had an app for my windows phone that would organize at minimum our school/evals/IEP communication and documents 🙂 (sorry to keep interrupting)
(Interrupting? I live for this. It’s so much more fun to be doing this together than alone.) Do you know about Dropbox? It’s an app for your computer/smartphone that would let you access your own files. Kind of like having your own server. Some day maybe the care map will replace the binders altogether and link to the files. We’ll get there!
Messing with dropbox now. . love when someone has some solution to a problem I’ve been mulling over! I wish I had more time to actually be organized, but it has to come in spurts, the map keeps me busy, then there is paperwork and trying to have a family life. Just keep the balls on the air and keep on juggling.
Balls in the air, spinning plates, whack-a-mole, there’s no end to what needs to be done. We do what we have to do. I find picking a focus helps. Or it you have no choice, do it knowing that lots of people out there have got your back. (And while singing Montell Jordan’s “This is how we do it” while doing it.)
Jenny, where are you. Would love to discuss your so and gymnastcs. . . I may have some ideas for you. Amysue@wades.org 🙂 hope we can connect.
Hi Cristin
I’m a paediatric resident in Singapore, and just finished my rotation in the Child Development Unit where I had the privilege of sharing in the care of many children with special needs. Could I share this diagram and a link to this page on my Facebook page ? It is a powerful image, and would help many of us trainees understand (a little) better the challenges that our patients and their families face.
Thanks,
Lydia
Lydia, yes, please share! Thanks for partnering with families and telling their stories. I am lucky enough to work with some amazing trainees and med students here in Cambridge and I can see how new skills and a new perspective is being taught to handle the new challenges of health care. Thanks so much!
A wonderful tool, and not just for those with children of special needs. I immediately thought of the old adage “It takes a village to raise a child” so much more true with children of special needs, but any parent can sit down and being honest draw their own map of how their child interacts in the world around them. I think it would be a real eye opener for many , and would show there is much more influence to their childs developement znd care than home, school, and the circle of friends they know of.
Yes, David, it definitely takes a village for everyone. The gift of my experience is that I get to see that. Sometimes I like to believe that others get to be independent, but no one really does. Here’s a post on that if you’re interested: http://durgastoolbox.com/2011/12/21/oreos-for-my-village/
This is awesome! I have one child myself with (mild) Asperger’s Syndrome, and I do substitute work at the local elementary. I work with the MH kids there quite a bit and ADORE them, but I will say that they make me even more thankful that my child’s AS is mild. I can’t imagine all that those parents go through and love how the teachers and TA2s at our school are so good with the students and supportive of the parents also. I would love to share this with them, and put on my FB page as well, if you don’t mind. Thank you!
I don’t think we can compare our children to each other, though it’s true that certain systems of care make life more challenging than others. I think we adapt to what we have. It is good to appreciate our own kids’ gifts though!
Cristin – I too am a mom of a special needs child. I so understand this map – and mine is even more challenging being a single mom with the child’s father not really wanting to be involved in the ‘special needs’ aspect of our child. I am buried under mounds of unorganizaed paperwork that I am hoping to find a solution for this year. I hope you can send me a copy of this ‘artwork’ so that eventually I can find time to make my own. Maybe, just maybe, others will then see why I am always so scatter-brained! Thanks for such an awesome idea. I can be reached at kelsmail2001@yahoo.com
About the care map: You should be able to right click on it and print it or save it. I will say that there’s no right or wrong way to do it–just start with your child and your family in the center and spread out from there. About single parenting: It must really be extra challenging (special needs or not) when a parent decides that they don’t want to or can’t engage. I definitely acknowledge that I’m really fortunate to have my husband. Keep taking care of yourself and growing your skills, and it will get better. As far as getting organized goes, I can say it’s worth it. I started with a couple of binders, one for health and one for school, and a few dividers, a hole puncher and a stapler. Made me feel totally empowered. Maybe a friend could help keep you company while you do it? Good luck!
I think I’m going to have to put this from a I “should”try this, to I “NEED” to do this.
My 5 yr old has CP, amongst other things, and there are so many doctors and appointments for therapy that I know I’m dropping some of these balls trying to struggle to juggle them all.
(And maybe it would help to show it to his pre-k PPCD teacher, who is giving me grief that his homework (worksheets and stuff they send home) doesn’t always get done)
I saw a letter made out at some point, that the mother asks to take in consideration, we’re teaching our children stuff that comes naturally to others… And that time has to come from somewhere, and most of the time it’s the kids own play free time.
I wonder if there would be a way too add in the rest of the immediate family… Dad works at this time, siblings own attention time ect.
Maybe on a clear paper so they can overlap.
But that could just be me really knowing I need a better visual schedule lol.
Thanks for putting this out there 🙂
Visual schedules, mind maps, whatever works, right? Yes, we do much that comes naturally to others. I see that with my typically developing daughter each day. I realize also that much comes easy for me that doesn’t for others. It’s not a competition, but at the same time it’s important to be self-aware–about what’s challenging and how to address those challenges.
I have made mind maps for my other three kids (one who has special needs too), I use them to make sure they are not left in the dust in the confusion that is our lives. They have a circle on the bigger chart with their name on it, but their circle is their own map. Sibshops is a really important piece for us, if you don’t know about it, and you have other kids, i’d suggest you look itup. Started by Don Meyer in Seattle. The Sibling Support Project is the official name, I think. I also try to make sure that the other kids (and husband) know that they too are an important part of our spinning family. Sometimes when I am juggling appointments, school work, paperwork, I have to make a conscious effort to tell everyone else in the family that their needs are important too. It sounds bad, but sometimes when the world is revolving around my older kiddo with special needs I do actually have to remind myself that my other kids have futures too. I tell the people in my world that it must be hard to be my friend, I walk a fine line between expecting everyone else to have nothing but high expectations and inclusive thoughts about my daughter – but then expect them to cut her (us? me?) extra slack, and be extra understanding when things get a bit messy, awkward, or down right uncomfortable, My map has an extra bubble, my own mental health . . . which often doesn’t not get the attention it deserves 🙂 (said with a smile)
The Sibling Support Project is on our map too! We also have a state chapter that has been somewhat helpful as well.
Hi Cristin! I’d like to reference your insightful map in my daughter’s blog: Joscelyn’s Journey http://www.joscelynsjourney.wordpress.com I’m writing a post on the topic of how it takes a village to raise a special needs child and your map is the perfect addition! Thanks!
Of course! Go right ahead. Put a link up here and I’m happy to direct folks to you too.
Thank you! Still working on the post but I will let you know!
Being an Indian I like the visual link to Goddess Durga! 🙂 A powerful God and toady as I am preparing for an exceptionally difficult IEP meeting I could do with some divine intervention.
But, more importantly, wanted to know if you have looked at person centered tools like PATH and FUTURES Plan for your child?
Isn’t Goddess Durga lovely? She is surely with you today in your IEP meeting, and every day. (I take strength wherever I can get it–I hope I’m not offending anyone with my appreciation of her.) Regarding person-centered planning, doing one for my son was really empowering for me. I haven’t yet made a link between it and the Care Map, other than to mentally compare the activity that the Care Map reveals and what it is that we’re trying to achieve for our son. Do you have a favorite technique?
Brilliant idea. Thank you. What a great way to describe your child’s care. I was wondering, I am a member of a special needs caregiver circle at the company I work for. This our place to advocate on what it means to be a special needs parent, elder caregiver, etc. as well as exchange ideas and strategies. May I share?
Thanks,
Yes, feel free to share!
I’d like to share this in a class I’m taking on Pervasive Developmental Disorders. May I link to your blog? We’re discussing circles of support this week and I think you’ve hit on quite a few that our text leaves out.
Please feel free to share. Thanks!
I would love to share your map with parents, and service providers, of students in my special needs class. Brilliant!
Please feel free to share. We should all have our own!
I keep coming back to this post, it’s really clarified for me just why I often feel like I’m running a multinational company rather than bringing up a child! Thanks again for the inspiration for my illustration.
We certainly get some good management skills–communication skills, management skills, negotiation skills, project management skills, time management skills, the list goes on…
To answer your questions:
Have you seen anything like this?
Do you think you’d ever consider making one?
Assuming that you would tailor it to suit you, would it be hard or easy?
Do you think it would help? How?
If you’re a provider, family member or friend of someone with special needs, what might their Care Map teach you?
I had not seen anything like this until you have shown it.
The minute I saw your map, I knew mine was long overdue.
I initially thought I had so much to say –” this will be easy!” — but after looking at yours closely and following your guidelines I realized how uniquely written each family’s (including mine) would look like. I imagine now it will be harder than I initially thought. It will take some quiet time. It might take some editing… but I can also see how it will reflect “the time” that each family is in in the moment it is made. It doesn’t need to look like “tomorrow”, it just needs to look like “today”.
Do I think it will help? How could it not!!! 🙂 I wish that I had made one oh so long ago. Especially for my now ex-husband who blew off all the focus that I put into our son’s care. All the careful attention to the minute details and appointments and the research and communications with insurance companies, state funded programs and therapists and nurses who regularly came to our door… I don’t believe it would have changed the course of our marriage and family in that regard. But I believe a map like this would have given me the “face” I needed when even I lived in some self-doubt about how “significant” my efforts were.
I think one thing that I have learned is that our circle is much bigger than we grant ourselves in believing at times. Some days are so difficult, so overwhelming you feel like your world is quite small and ineffective. The truth is that those days only need to be “that day” and not “everyday”. Our world’s are bigger and more diverse than we allow ourselves to believe at times.
Your comment deeply touched me. I think I can relate to the feeling of self-doubt about whether I am doing “enough” but to imagine being judged for that by a spouse is really painful. To think that this might be a way to help alleviate that self-doubt is exciting. That the care map might also help us see that our support world is bigger than it seems on a bad day is also making me excited to explore that aspect of it. And as someone who mixes up “that day” with “everyday” (like I just did this morning getting the kids off to school!), it’s a good reminder that our world is bigger than it feels in that moment. Thank you so much. One last thing–yes, the care map as it exists (pen and paper) is just a static snapshot. It will change over time, so don’t stress about getting it complete or for doing it “right.” However you do it, it will be yours and that will be perfect.
This is so simple – it’s pure genius! My daughter was born with hydrocephalus and incurred a devastating brain injury as a result of a shunt malfunction. I had just accepted that no one would get what it’s like to manage a special needs child’s care because as it’s just as you say – you can’t begin to explain the complexity – but you’ve proven you can illustrate it. I have made one of my own and looking at it kind of scares me – but I finally have a way to show people what it’s like. Thank you SO much for such an amazing idea! Best wished to you and Gabe!
Debra, would you be willing to share it? I’d love to see it. A few others have shared it and it’s wonderful to watch how people make them their own. I think it’s helpful for people to see that they’re so different and that there is no “right” way of doing it. Making it your own is all you have to do! Best wishes to you and your family too. Thanks for reaching out.
Cristin,
I may be interested to show your care map / diagram to an audience of parents of children with special needs, as part of a discussion on Medical Home management. Please let me know if I have your permission to do so.
Thank you.
Samuel Zinner, MD
University of Washington, Seattle
Yes, please share! I do a lot of work in medical home practice transformation, particularly supporting families who partner with their practice on QI teams during transformation here in Massachusetts. In about an hour, Dr. Rich Antonelli and I will be talking about how to use the care map as a tool for authentic family-professional partnership on the Huff Post Live: http://live.huffingtonpost.com/r/segment/what-it-takes-to/50f97e3dfe34447bd30002f3. You might be interested!
I work for a government agency that provides and funds services for individuals with developmental disabilities. I would like to use your idea of a care map with a focus group of parents to indentify what their barriers are to find out how we can better assist in overcoming them. Also, looking at areas that are less complete (recreation) we may be able to identify new opportunities for expanded services. Thank you, your map will help make the lives of several thousand people better in my small geographic area of the world.
How wonderful that agencies like yours are look to develop their programs and services by partnering directly with consumers to provide person-centered support. Care mapping can be a useful process and tool in that regard. As my partner, Dr Richard Antonelli of Boston Children’s Hospital, and I gain experience teaching, using and testing this tool, we have become aware of a few issues that we want to make note of to folks who plan to use the tool in the way you’re describing; for instance, there’s really no correlation between the how adequate service offering are and the number of “circles” on the care map. We hope to have an introductory guide available shortly to instruct folks on issues such as the example I gave as well as advice on how to support families and folks in the process of care mapping. If you can stay tuned for that, I think it could add real value to your process.
Reblogged this on Summit DD and commented:
We would love to see your Care Map…
We would love to use the concept of a Care Map with a focus group of parents to help identify barriers to help eliminate them and to find out what areas aren’t as large (recreation) to develop expanded service offerings. This will help thousands of families in our small geographic area, thank you.
Parent of a 17 year special needs girl, my world revolves around her most of the time. With great support from my son, we have knitted a web which may in some way be similar to the one you have weaves there.. The threads of the web have travelled far as much to the other part of the globe. I stay in India and this shared by my friend in USA who has made a great impact on our lives…
The simple illustration speaks a lot.
Farida, this is just another way we are all connected. Thank you for reminding me of that. I would love to hear how things are in India if you would like to share.
Hi Cristin, Here’s the link to my latest blog post featuring your care map: http://joscelynsjourney.wordpress.com/2013/01/26/the-village/ Thank you so much for allowing me to reference it!
Fantastic! And you go, mamma! You are doing an amazing job. Thanks for telling your story.
Thank you, Cristin!
Hi! What a wonderful idea! Kudos to you! I would love to make one of these to try to map out my sons different care providers etc. may I pls use this? I have a 4 year old sweet boy w severe autism and dd. trying to keep Everything straight is tough but trying to explain to others….ahhhgh! Would love you use your tool! Thanks- heather wwwwwwwwho@yahoo.com
Yes, please use it! Let me know how it goes/looks/feels when you’re done if you’d like to share!
Thank you!
May I share on my just-getting-started blog, SeeDyslexia.blogspot.com, and with parent groups? I am a parent to an 11 year old girl with dyslexia and ADHD. Having recently lost both my parents to cancer (twelve days apart), I am looking forward to making our own maps as part of our family’s healing process. Thank you and best wishes to you and your family.
Sue, I’m so sorry about your parents. By all means, please do give care mapping a shot. A “how-to” guide is coming shortly if you need some direction with it. Stay tuned.
Great map! I especially love your use of color. I am a very visual thinker and as such, made a map very similar to this for my son’s care and also decided to make one for me and all my projects! I based it on the ‘eco-maps’ which are used a lot in psychology/counselling. The eco map is slightly different in that it uses concentric circles to show each person’s supports and how/if they overlap or relate. Such great tools for visual thinkers!
I am currently participating in a LEND (leadership and education in neurodevelopmental disorders) graduate program at the University of Arizona as a parent of a child with special needs. My main role is to provide the other participants with insight into the “real” world of living with a child with special needs. My map is not as beautiful as yours…..would it be possible to show yours to our class to help them understand the many balls we juggle everyday?!
Thanks for your time and for sharing your family’s journey!
I was a LEND fellow too! (at Boston Children’s Hospital/Institute for Community Inclusion). Please feel free to share but if you can hang on for just a few more days, there’ll be a “how to” guide (for families and professionals) coming that may add something to the conversation.
Excellent! Isn’t LEND great?! I am loving every minute of it. Looking forward to the “how to” guide.
LEND is the best. Have fun in DC!
Hi my name is Nish Parikh. We have developed a patent pending technology and method to deliver intervention at school and at home in a synchronized and holistic way. We are in process of developing a viceo and would like to take the permission to use your diagram. I can be reached at nish@webteamcorp.com. Also let me know if I can speak to you for a moment about our initiatives in the area of intervention. our LinkedIn account is http://www.linkedin.com/in/shaneshcolors/
Cristin, I love the visual impact of your map! I coordinate the Great MINDS (Medical Homes Include Developmental Screening) grant at the WA Dept. of Health and would very much like to use your map as a tool to illustrate the import of creating policy around care-coordination to our steering committee & stakeholders. Your colorful diagram is truly powerful and accomplishes so much more than talking!!
My best to you and your family
Hi. A picture is worth a thousand words! I love your map and would like to create one to share with the folks that support our son. He is a 13 yr old with autism – many don’t understand the “village” it takes for his success. Also, I manage a Miracle league baseball league (for kids with special needs) and would like to share with the players families. http://www.facebook.com/foxvalleymiracleleague
Great resource! Thank you.
Yes, feel free to give it a shot. A “how-to” guide will be coming shortly if you need some support. Thanks for all you do with the baseball league–my son did a program like that and it meant so much to our family.
Dear Cristin,
I am a PhD student at Carnegie Mellon, developing technology to help with collecting and sharing behavioral/medical data in special education. I’ve been writing research papers trying to convey the complexity of a child’s data and show computer scientists how we can make a big impact in this area. There are a ton of stakeholders who need to stay informed and be able to analyze a child’s data. We really need to move it off of binders! 🙂 Could I reference your care map in my research presentations? I think it would really help me tell that story.
Best,
Gabriela
I’ll reply off line. I’m so interested in what you’re doing.
Awesome 🙂
Hi Christina. Thank you for sharing a very powerful post & map. I am doing some training for Peds nurses to help them communicate better with parents & understand where parents are coming from. I would love to be able to use your post and diagram in the training. I think it would really help them to understand what parents are juggling. Thank you for your consideration.
Heather, you’re welcome to use it. If you can wait a couple of days, I will also have a how-to guide for creating and using mind maps as well. Stay tuned!
I teach pre-service special education teachers, and we talk about making an “eco-map” with families. It’s similar to what you have here, but is focused on support systems available to families. (See, for example, http://www.cahs.colostate.edu/ccp/PDF/AboutEcomaps.pdf) I really like what you have done here, and will share it (and this blog) with the students in my classes. I think it will be very helpful for the families they’ll be working with. Thanks!
Hi Cristin, I’m a Family Support Manager for a disability organisation in Australia. I’d love to use this idea in an upcoming camp for parents of 10-14yr olds. We’re running a session about planning and I think it will really help them to plan if they can visual where they’re already at.
Thanks
SueB
Sue, we will have a how-to guide available in the next few days, with lots of lessons learned about how to support others make their own care map.
Hi Cristin- I am a county coordinator for Sooner SUCCESS in Oklahoma, we provide resources and information to families raising children with special needs. Would it be ok to use your care map sample in a presentation. I know your map (I am a mom to a 10yr old with DS) can relate to your map and how it fits their lives.Thank you so much for sharing this.
Lori Wathen
Yes, feel free. Be on the lookout for a how-to guide for families and professionals very soon!
Cristin,
This is an amazing map. My colleague and I are writing a chapter in a text book for medical students and are highlight the impact of having a child with a chronic condition on families. We were just writing a section on how healthcare providers need to be more aware of the multiple appointments and the high level of coordination it takes to meet the needs of children with chronic conditions. We would love to include Gabe’s map as a figure in our chapter with your permission. Please let us know your thoughts. You can email me at avani.modi@cchmc.org and I can provide more details.
Cristin,
I have meant to write to you sooner and tell you what an amazing map you have created to guide and teach about care giving for a special needs child. Thank you for sharing this with the world. I am doing a webinar with the National Association of Public Hospitals and would like permission to use this in a slide to show the power of a mom in patient and family centered care. I will do a care map for Danny one day and thank you for your inspiration.
Have fun with it! We’ll be launching a how-to guide soon. Glad you like it and hope you’re well.
Hi Cristin, thanks for sharing the care map on your blog (not sure how I stumbled upon it.) In Cincinnati, we use a tool call “who’s in your life?” based on research done here locally in the 1990s to help people and their families take a closer look at who knows a person and their role in their life (family, paid staff, other people with disabilities, citizens, friends. We are particularly interested in working with people with the label of a disability work on filling up the bottom quadrant of citizens and friends. Thank you for sharing the care map, it helps put into perspective who all the “paid staff” might be and the role family members play in navigating the stickiness.
http://cincibility.wordpress.com/2012/06/08/51-people
http://cincibility.wordpress.com/2013/02/15/the-five-valued-experiences/
I have also done some paid versus unpaid people in other contexts but you make a great connection. Care mapping can be used for that too with an extra layer of symbols or dotted lines. But more importantly, the point is that for folks like our family/my son, our natural supports are a little more vulnerable and require extra cultivation. Thanks so much for bringing that dimension into the conversation. I looked at the diagrams you had done and found them very powerful. Thank you so much!
I am a Paediatric Psychologist working in a Children’s Hospital in the UK. I found your Care Map very helpful and would like to be able to use it when working with the families of my transplant
patients to help them prepare for life post transplant.
I know I’ve been writing this for the past two weeks but a “How-To” guide (for patient/families and professionals) is coming very, very soon. Boston Children’s Hospital will be creating a care mapping page on their website. We’ve learned some unexpected lessons on how to use it, so you may want to stay tuned for that.
Looking forward to the ‘how to guide’ 🙂
Hi Durga,
My name is Cheryl & I work at a Public Health Agency. Within Public Health, we have Field Nurse home visitors that help families try to navigate this H U G E system. We also work with California Children’s Services and Medi-Cal in California as well as medical providers and any other resources within our small rural community.
WE GET IT!!! I love your map & would like to share it with my staff if that is okay Thank you & good luck. 🙂 Cheryl
nurscherylz@yahoo.com
Yes, please share away! How to guide coming any day, I promise!
Cristin, we work with first and second year pediatric residents in a community based organization rotation they have with the IU School of Medicine here in Indiana. We would love to share this Care Map with them as we try and paint a broader picture of medical home and what all goes into the life of families raising children with special needs. We would like permission to do this…giving all the credit to you!
Thanks…Jane Scott Director of Family Support, About Special Kids, Inc
Feel free to use it. Also take a look–we now have how-to guides available! http://www.childrenshospital.org/clinicalservices/Site3508/mainpageS3508P0.html
Hello Cristin,
I would love to be able to share this image and link in our company newsletter. I read the article in Huffington Post back in January, and shared it with others at the time. The message from your image is powerful and lends itself well to our discussion of circles of support in transition planning. Please let me know if you are okay with it being shared.
Sincerely, Amy Radochonski, College Living Experience
Absolutely! Please take a look at a more recent blog post on links to “how to” guides for those who are interested in making one themselves.
I would like to share your image with the staff of the Children’s Hospital Association if that is okay with you. This picture reminds me of the work of Uri Bronfenbrenner’s – the ecological theory of development. Good work!
Jacqueline
Please feel free to use the image. In the attribution, you can direct folks both to the blog and to Boston Children’s Hospital website (search: care mapping). I’m doing some interesting research with Dr. Rich Antonelli and it may interest folks to see it there.
Hi Cristin,
Jacueline shared your blog site with me and I was blown away. I helped develop a more practical application of Uri Bronfenbrenner’s work that we call the Child’s Health Ecosystem. It is remarkedly similar to your care map. You can view it and how it is used at http://www.centerforchildrenshealth.org/en-us/Action/Pages/default.aspx.
I would like to use your care map image with our community presentations – with attribution and link to your blog, of course.
Dunga may be your patron saint, but you are doing the work of angels.
Best,
Larry
I look forward to taking a closer look! Please feel free to use the image. In the attribution, you can direct folks both to the blog and to Boston Children’s Hospital website (search: care mapping). I’m doing some interesting research with Dr. Rich Antonelli and it may interest folks to see it there.
Hi Cristin,
By coincidence it seems I am asking a similar request to the one Larry T. asked just above. I too use a version of Bronfenbrenner’s ecosystem, in a course I teach to child life graduate students, and came to ask your permission to show them your stunning care map side by side with it, properly attributed. Thank you for considering. I look forward to reading, discovering, and learning in your blog!
Sincerely,
Jon Luongo
Child Life Specialist, Brooklyn NY
Adjunct Instructor, Bankstreet College of Education
Yes, feel free to use it for that purpose. Best of luck!
Hello Cristin,
I, too, understand the magnitude of caring for a child with complex needs. I often present to groups the need for a medical home to coordinate care in a compassionate, family-centered way. In order to help uninitiated understand, I created and printed out a very long list of the people my son and I interacted with and had to coordinate with on a daily, weekly, or monthly basis. At one point in time I took pictures of many of them and created a map similar to yours with the faces grouped around a photo of my son and arranged in categories distanced from the center based on the frequency and intensity of involvement. I discovered your blog and am thrilled to see the response to your idea. I too would like to let others know of your blog so they can create their own visual especially to help professionals and others understand how important it is to have the child in the center and to never forget to focus his/her care based on the child’s and family’s wishes. I hope you will allow it.
Laura Oppermann
family advocate
Sure, please feel free to share anything you feel is helpful! I like your idea too. There are so many things that need communicating.
Dear Cristin:
I’m a Family Invovlement Coordinator in the State of Oregon and the parent of a child with autism. I’m presenting at a conference next weekend to primary care pediatricians on the topic “Patient Engagement”. They are asking me why parents often fail to follow through with the recommendations physicians have for the care of our children. Gabe’s map is such a clear representation why we cannot possibly follow through without care coordination and shared care planning. Would you mind if I copied it and included this in my presentation…with credits to you of course.?
thanks so much,
Shelley Barnes
Sure! And you may also want to check out the whole shift from compliance/adherence to concordance. The whole “do what I tell you to do” just doesn’t work–it’s about my values, priorities and preferences, not just the doc’s. Partnership is the way.
HI Cristin:
I’m writing one more time to ask permission to use the map at a Parent/Professional partnership webinar I’m doing for physicians! I will of course, credit your work…It is so helpful for physicians to see! Thank you so much!
Shelley, Please feel free to use it. I do my best to keep up with responses but sometimes all those other bubbles on Gabe’s care map take over!
Hi Cristin! I’m working on a guest blog post for a cerebral palsy organization, Reaching for the Stars, and would like with your permission to use — can you guess? — an image of the map. Okay by you?
Yes, share share! And post the link–I’d love to read it.
Will do. Thanks!
Bit of a holdup at the aforementioned RFTS, but here’s a link to my “guest post to be” as it appears on my blog: http://www.kcphysiatry.blogspot.com/2013/05/thanks-for-asking.html. Take care —
Hi Cristin,
I am a former LEND fellow (just this past year) and now work with Stephanie Porter at MASSTART. Could we use an image of your Care Map in a presentation on “Developing Support for Students with Special Health Care Needs in Schools and Community” to Summer LEND fellows? It’s such a great visual tool.
Hi, Cristin. Fantastic blog and what a helpful visualization with Gabe’s care map. I’m the editor of a site called LearnNow (www.learnnow.org) that publishes stories about raising and educating kids. We’re soon launching a series of articles about health and learning — and included in the series are a number of articles that talk about the challenges (and solutions) to raising kids with special needs. One article in particular, “Parents as Unsung Heroes,” written by a pediatric nurse practitioner in Boston, talks about the enormous challenge of caring for kids with special needs — and the need for a much more robust support system for parents, who are often the ones left putting together the pieces of a very complex puzzle. The author mentions your visual, and we’d love to include it in our article. I’m happy to send you the link offline so you could see what it would look like. As you say, the visual speaks more than a thousand words. Many thanks – Emily
I would like to print this out to help me help a mom I am working with. Baby is 6 weeks old, on a feeding pump, many surgeries, specialists, therapists. So hard for mom to keep track of & get organized. She is running on very little sleep & has another child who is 2! Thank you for sharing your experiences & good luck to your family. I can only imagine how hard it is to be in your place, or this mom’s! So just trying to help her in any way I can.
It is wonderful that you are working with her and that she has been connected to your organization. Just a thought–I don’t know if the care map would have been helpful or overwhelming if I had a six-week old. We special needs parents are usually not born with all the skills and capacities we need to be on the top of our game. In those first few weeks, we may just be using all our energy just to make it through the day, and the thought of needing to be Supermom might just make someone feel more overwhelmed. Use your judgement and maybe save it if you think it will overwhelm her. In the mean time, it can be helpful to assist her in getting respite care when possible and sleep as well as healthy food and good health insurance. Most importantly, I would say that getting connected to other families who have been in her shoes is probably the best thing you can do for her. I don’t mean to diminish the importance of the expertise of professionals, but that can often be the catalyzing factor that helps us grow. My most recent post talks a bit more about what she might be going through right now: http://durgastoolbox.com/2013/08/09/mind-the-gap/. Best of luck!
Hi Cristin – Wow, talk about a picture being worth 1000
words!! Sometimes a visual packs a punch like words never can, and
that’s what your care map did for me in conveying the complexity of
family life with a child with complex care needs. I’m hoping you’ll
let me incorporate it in an online webinar that I am hosting next
Tuesday. The project that I work for, the Military Families
Learning Network, is funded by the U.S. Department of Defense and
has as its goal to provide information and resources to various
support professionals who work with military families, including
child care providers (my part of the project). The webinar on
Tuesday will focus on what child care professionals need to know in
order to provide great care to young children with disabilities
from military families. The first half of the presentation will
given by Wendy Kruse, Navy wife and mom of a daughter with complex
special needs. She’s planning to talk about the complexity of her
life (something I think many child care providers are unaware of),
and I think she would very much appreciate your visual
representation as another way of getting the point across!! If you
would like more details about anything before giving permission,
please feel free to email me at kreschke@uga.edu and I’ll be glad
to answer. Thanks so much, Cristin!!
Please feel free to use it with a shout out on the slide. Good luck! Military families with disabilities must have even more complexity than either group alone. I’m sure I could learn a lot from her!
Thank you so much, Cristin! And yes, I’m overwhelmed just listening to Wendy describe her life – deployments, moving something like 11 times in 13 years…. She started an online community specifically for families like hers, the Military Special Needs Network (http://militaryspecialneedsnetwork.com/ ). If you’re interested, I’m sure she’d love to connect with you! She’s an amazing advocate (and she LOVES the graphic!!).
Thanks again, Cristin!
Thanks Cristin, I too am a mother of a child with disability and sometimes I think we ourselves forget the complexity and number of the professionals in our lives. I am running tranisition from school workshop for parents in special development schools in Australia. The aim to get families thinking about what next after school and start planning early to ensure a smoth transition. I was hoping to use your matrix to show families the complexity of the professional relationships with the focus of how to develop respectful relationships with the proffessionals in their lives. Please let me know if I can use the image and let me know if you have any further questions.
Yes, please feel free to use the image and thanks for asking. Transition is such an important issue and it’s never too early!
Hi Cristin, I came across your blog reading the proceeding about Partnering with Patients. It is a great resource and I was particularly interested in your Care Map. It reminds me of the framework of the ICF (International Classification of Functioning, Disability and Health) http://www.who.int/classifications/icf/en/.
We are using this framework to develop an App that could be used to gather the data and complexity of patients and their families as you are describing them in your map. We are still in the project phase and if you are interested to know more about it, check out the project Facebook page https://www.facebook.com/ICanFunction or drop me an email.
Thank you!
Olaf
I’d love to hear more! Feel free to email me directly at caclind (at) gmail (dot) com.
Thank you for this powerful visual reminder of the need for integrated services for children. I help teach a course for 1st year Harvard Medical Students called, “Introduction to Social Medicine and Global Health.” With your permission, I would like to use this image in my presentation for them as I think it is a powerful teaching tool for the social determinants of health.
Thank you for your consideration.
Jennifer, please feel free to use it. And please give my best to your CHIPRA medical home improvement team, who I had the pleasure and honor of working with before moving to Sweden this past spring. If you are interested, I’m happy to present the care map virtually to your students–what integrated care means to me, to other families, and to the professionals I have spoken to in the course of developing the care map together with Dr. Richard Antonelli at Children’s Hospital Boston.
I would really like to connect with you. I am working several grants that help families with children and youth with special health care needs in addition to parenting one amazing daughter with spina bifida. You are really on to something with this drawing, and I would like to share it with others. Can you connect with me?
This is wonderful. May I use it to speak with a group of
states and health care organizations in a discussion of the
challenges of care coordination? I am with IBM. Best. Paul
I know this is an old post and I seem like I’m behind, but I actually saw this a while back. I wanted to make my own map when I first saw yours, but life kinda got in the way 🙂 I just finished making a mind-map for a school assignment tonight and thought…I should make the one I wanted to make last year and never got around to. So, here I am. The problem is, I’m a little stuck. I have two kids, 8 and 12, and they both have special needs…similar, but also very different. I kind of wanted to make one with both of them in there since they have some of the same doctors, therapists, and recreational/community bubbles. On the other hand, my youngest son has a great deal more. I see that you put your whole family in yours, but I just can’t seem to get started on mine. I’m open to suggestions!
I think it depends on how you are going to use them, and you might want to make two version–one for each kid, and one together. I find that if you put too much information on it (like more than one child), it isn’t a very helpful tool to use for communicating with care providers and teachers–they have an easier time focusing on one child. That’s where having one for each kid can be extremely helpful. (My whole family was on ours only to the degree that it included our needs that stemmed from Gabe. So for example, my daughter had some “sibling of a special needs” resources there, but I didn’t include girl scouts, etc. It didn’t include my work, etc. Just the resources I need to be able to parent Gabe.) But if you do eventually want to have one complete one just for your own mental organization, I’d recommend thinking about using different colors or shapes (of the “bubbles”) for each child. Hope that helps.
I’m the dad of an 8-year-old special needs girl (and a typically developing 6-year-old boy). She had open heart, skull, and eye surgery when she was a baby. In fact, tomorrow is Maddie’s 8th “Heart Day,” the 8th anniversary of her open heart surgery. She’s developmentally delayed because of her early struggles, but that doesn’t stop her. In many ways, it empowers her. It led me down a path I never expected the good Lord to call me down. I quit my job, went back to nursing school, and became a pediatric RN. Now I have combined my previous career with nursing and work as a public policy nurse, helping to make a difference for the “Maddies” of the world on a larger scale. When I saw your care map, I teared up. This is my family’s life. This is Maddie’s world.
May I share this with a group of home healthcare providers, so they, too, can understand the big picture of their clients’ lives?
THANK YOU for doing this. (Oh, and my wife will also very much appreciate the reference to laundry!)
Congratulations to Maddie on her Heart Day and congrats to you on opening yourself to hearing a calling from the experience if parenting her. Of course you may share the care map. Even better, take a shot at making one with your wife at some point. Before the laundry, which will always wait. 🙂
Hi Cristin –
Having been on the Mass Family Voices listserv, I was awed by your diagram when I first saw it come out. I work for Family Voices National Center for Family/Professional Partnerships and we would love to include it in a report of the activities and accomplishments of Family-to-Family Health Information Centers. It clearly depicts the challenges a family faces in caring for their child with special health care needs and would make an impact on the report’s readers. Would that be ok?
Peggy
Of course, Peggy. Please add the following caption: “Used with permission of Cristin Lind, http://www.durgastoolbox.com“. Thanks.
Hello Cristin,
I was just forwarded this by a long time family friend and an advocate. I have a brother who is 23 and has Down Syndrome. I have recently joined by Dad’s planning practice helping families plan for their future as well as their childs. We recently created a presentation called ‘A Team to Carry On’ where we talk about all the roles a parent plays and how to create a team to carry on their vision. We discuss the five factors that should be considered when creating a team to carry on, Family and Support, Legal, Financial, Emotional and Government Benefits, these are all included in your map! Also, throughout this presentation we reference many tools including the letter of intent (which is on our website, http://www.specialneedsplanning.com). This map is extremely helpful and what a great visual!! With your permission we would love to mention this in our presentation and add it to our blog. I am also going to use this idea and create one for my brother!
Thank you!
Alex
Of course, please use it but give credit. And say hello to your mom!
Hi Cristin,
I work at the Lucile Packard Foundation for Children’s Health. We run a multi-county care coordination learning collaborative in California focused on improving local systems of care coordination for children with special health care needs. We also fund a project with your colleague, Dr. Antonelli. I would like to ask your permission to use your care map graphic on the page for our care coordination collaborative group. Please let me know if this is possible and the best way to credit you and your work.
Thank you,
Holly Henry
That’s fine Holly. Please give credit and a link to the blog: “Used with permission from Cristin Lind, http://www.durgastoolbox.com.” Thanks! And please post a link when it’s up.
Hello,
My name is Elie Sollins. i’m a clinical social worker at the Center for Autism and Related Disorders at Kennedy Krieger Institute. I’d like your permission to use Gabe’s care map in a presentation I’m doing at the Center for Autism and Related Disorders at Kennedy Krieger Institute? It illustrates perfectly the complexities that families face…I’m hoping the presentation will equip providers and families with basic tools to help families manage their child’s plan of care. Thanks you for all you’re doing. Thoughts….
-Elie Sollins
Ellie, feel free to use it with credit. Thanks.
Hello,
My name is John, I work on behalf of Elsevier and would like to see if we could re-use the picture in an online continuing education course for nurses. Full credit would be given to you if permissions is allowed. Also, if you do allow permissions, was wondering if you have the image in a higher resolution?
I appreciate the time, and look forward to you’re response.
Thanks,
John
Hi John. Please contact me directly at caclind (at) gmail.com. Thanks!
This is a wonderful approach! We are using it with families who have children with epilepsy in PA – there is a book out there that also talks about care maps and circles of support – The Inclusion Papers: Strategies to Make Inclusion Work. by Jack Pearpoint, Marsha Forest and Judith Snow (1992) I still use it to guide and inspire. If it is still available, you can try Inclusion Press, 24 home Cres. Toronto, Ontario, Canada M6H 2S5.
Thanks for that resource, Dianna.