Lisa Belkin at the Huffington Post did a wonderful story on me, my family and my Care Map on Friday. So many good things are coming out of it: new friends, new thought partners, new mentors, new opportunities. In some ways, the impact is easiest to capture in the stats: 9,000 visits to the blog, 4,000 Facebook likes, 1500 Facebook shares, 300 email shares. Impressive, unexpected, energizing. These numbers are connections, and it’s in our connection, in our community, that our message for inclusion and celebration of all people grows and thrives.
One unexpected consequence of the article was the public comments it would generate. Most of them were wonderfully supportive. Some were hurtful though, suggesting all sorts of things: that my son should never been born, that our society is harmed for having him among us, that we should stop investing anything in him, that I should stop whining. Even that my daughter’s name is dumb. I know, I know, the internet does strange things to people, making them feel invisible and invincible, free and even obligated to say whatever comes to mind. But ouch. It really hurt.
It hurt so much in fact that my first impulse was to label them as Jerks, to dismiss not just their opinions but their souls. To not only disregard them, but to wish them ill. Then it was to disengage–to stop reading the comments altogether (even the good ones, sadly) because I knew nothing good would come of it for me. Reading and responding would only perpetuate the toxicity of it all.
Author and visionary Oriah Mountain Dreamer once wrote: “Show me how you turn away from making another wrong without abandoning yourself when you are hurt and afraid of being unloved.”
Yes, show me how. How do I not abandon myself in this moment? Some guidance came this morning via illustrator Nathanael Lark‘s inspiring cartoon, How to Change the World.
It’s easy to consider another person a jerk when they hurt you. No one would blame you. And in this wonderful work of parenting a child with special needs, there are lots of opportunities to turn your hurt into hate. The problem is that it doesn’t change them, and it doesn’t change the world. The only way it changes you, if at all, is to make you smaller.
Thank you NLark for reminding me that even when I don’t love the messages, I can still love the messengers.
And in these few paragraphs, everything that is special and hard-fought/hard-won about you is brought to the light, in a way that the lovely article about you and the family simply could not show.
All the worthy lessons come from G. Without him, I’d be the Jerk more often than I care to admit. I took so much for granted, felt that my accomplishments were my own doing, not the result of privelege or gifts. Because of him, I know better. He is a great teacher, isn’t he?
The traffic that the Huffington Post has generated seems to have two main threads.
One is about your story, the other about the tool. I for one, love both.
As a story, I love it partly because I love you and your family, partly because you are such a beautiful writer, and partly because you tell my story too.
As a tool, it is brilliant in a one page glance/visual of what it takes to care for and think about the life needs of our loved ones. It does not matter if it is a disabled veteran, an elderly mother, a child or anybody with special health care needs. The tool rocks!
I took a course years ago and learned a plethora of great life lessons. Among them was:
You so get a say in how your life goes. No one can cast in a movie you don’t want to be in.
There are directors of horror flicks, dramas and comedies. But only you decide if you want a role in someone else’s movie. (some of those comments were a horrow show- No Thanks!)
For sure… I so get to say, I don’t want a role in that moive and you can’t cast me without my permission!
I love you very much and consider myself very lucky to know such a great movie writer and director. And … you can cast me in your movie anytime!
You move, touch and inspire me.
(how lucky am I…)
XOXOX
Lauri (a super fan!)
You are a super fan. You give me such strength. Thank you. I always deeply appreciate your take on these things. So yes, I refuse the role in that movie!
Opening your heart means experiencing everything – infatuation, passion, admiration, anxiety, loss, fear, hate. Our internal fires contain it all. How inconvenient. What all is in the hearts of those motivated to respond with bitterness?
Yes, the heart contains it all. Hope you’re well!
My three children all have special needs… 2 with Asperger’s and 1 with Noonan’s. I go through this cycle, but what staggers me is that 13 years on, I still bounce back to stage 1 fairly regularly, and have to work my way through all over again. I agree that something better than acceptance is at the end, that there is a joy in seeing the world as though freshly washed, bigger, more wonderful. But I do wish that I could stay there a little more.
Hi Benedicte! I think you may have been responding to the post about the post about stages of leadership? I agree, it’s amazing how we return to the beginning again and again. New challenges, new transitions, and we’re right back where we started, though this time we have new skills and friends to help us cycle forward more quickly, if we’re lucky.
I have to find time to explore your blog more!! I was responding to the post of the stages of grief. I try and grab those new skills and friends, but I have to say that to some extent I am worn down by the endless repetition. It catches me by surprise each time 🙂
It’s funny how often we circle back to what to do about “the jerks.” At some level we know that they have been hurt by some force or agent that we can’t see through the opaqueness of a blog post response. In my dream they had an opportunity to love someone who was unlike them and it passed them by – maybe because of what another “jerk” said or did, maybe because tragedy or a capricious event intervened, maybe because of some ordinary and innocent decision (two roads diverged in a yellow wood), maybe because of some misguided religious or political doctrine. It hardly matters here – their hurtful comments will come to rest somewhere in your heart where you will lose track of their specifics and all of our lives will rush on. I wince at their pain that they are hiding from almost as much as the pain they try to inflict as a result.
I don’t want to feel that I am better than them or have some lock on the truth that they aren’t good enough to have access to. Maybe I just hope that at least one jerk will stick around long enough after his or her barb to see that others felt differently: that we celebrate that your child was born, that her unique presence (and yours) are a positive force in our lives, that their few seconds of rage caused some of to reflect and think more about how to savor the positive energy that we thrive on
Thanks for reflecting along with me, Tom. Mostly I realize that there have been plenty of times when I was the Jerk to someone else–when I didn’t know better and said or did something hurtful, probably not meaning to but did even so.
Hi Cristin. I read the Huffington Post article, and I immediately identified with your Care Map diagram. My nephew is a special needs child.
One of the frustrating things about traditional health care is that doctors and therapists will talk to the family, and they will talk to other doctors and therapists (sometimes), but it’s incredibly rare to get everyone talking together and sharing information. We’re trying to change that. I would love your input on what we’re doing, and how we can improve it.
We started CaringShare to help families deal with these complex issues, and bring the entire care team (family, doctors, therapists, home health aides, etc) together to collaborate and improve outcomes for families. If you’re interested, please contact me at (612) 284-6464, or via email.
CaringShare looks cool! I’m definitely doing a lot of work with care coordination now, partnering with clinicians and policy makers to address the huge system change requirements needed to incorporate family-driven care coordination into the medical/healthcare/health system. Thanks for sharing!
As a parent of an adult child with special needs and co-founder of a non-profit supporting those with special needs and their families, your voice is refreshing. We spend a lot of our time advocating not only for our son, but hundreds of others in our area living with special needs. When I can give families the tools to empower themselves to be great advocates themselves, the ripple effect is amazing to watch. Thank you for giving of yourself and your family to make such a wonderful difference in so many lives. Keep up the great work! 🙂
Advocating for systems change is so rewarding. Once you start, it’s hard to stop! The best part is meeting up with other families like you, and knowing that we’re all out there and that we’ve got each others’ back. Thanks so much!
Hi Cristin,
I also found your blog via the Huffington Post article. I am the mother of two children diagnosed with special needs. I also live in Boston and probably visit with many of the same specialists at Children’s Hospital (Neurology, Endocrinology, Cardiology, Orthopedics, Gastroenterology, Genetics etc. etc.)
Your care map, article and blog really resonated with me, having just left our Endo’s office on Friday trying to explain to her how complex our life was and how overwhelmed I felt. Who knew all I needed to do was to draw her a picture! Your care map was an amazing coincidence (although I truly believe it was more than just that!)
I would like to ask your permission to share the huffington article, your care map and your blog address with other parents raising children with special needs? I blog at http://www.onalifelessperfect.blogspot.com and contribute to the website http://www.hopefulparents.org.
I would like to share your words and pictures with parents in these communities if it is OK with you?I will, of course, provide credit and reference to you, and only you, and direct folks to your blog.
I can relate to the consequences of going “global” and the questionable quality of responses that can sometimes follow. I try to remind myself that my message was a “test’ so to speak for others, Some, will choose to use the information to help better their understanding of the world, others will not. We are all at different places in our journey, some are just starting out, others are further along. Having the courage to send the message is what is most important. How others choose to use the information is up to them. Their responses are a reflection of them and where they are at. They are not a reflection of you or your efforts.
Please do not let it discourage you, your story has touched more people than you will ever know, especially the quiet population of parents caring for children diagnosed with special needs,. I, for one, appreciate what you have done! You have helped me to feel less vulnerable and less all alone and I thank you from the bottom of my heart for sharing your beautiful story.
It’s amazing how an article, a care map brings out the parents of special needs children/adults. We all recognize it and compare it to our own situations. My daughter is 19 with Duplicate Chromosome Syndrome. It seems even after 19 years (& 16 yrs. of which were trying to get a diagnosis) there’s always something new to learn or figure out. More hurdles to jump, more red tape to slice through- Not like we don’t have enough to deal with already. It’s never ending. It’s good to know there are many others like us sharing the same situations. You’re right, it is a full time job! Love your care map & your courage.
Thanks for saying so! It has been great to connect. Let me know if you ever do one for your family!
Add me to the list of parents of special needs children who found your blog through the Huff Post article. I’ve read a few of your posts and really like them. I plan to be a regular reader.
My daughter is 39 years old. She has had her disabilities since birth, so I’ve spent many years, in fact, virtually all of my adult life, advocating for her and for others with disabilities. In the last few years I’ve stepped away from advocating for others and focused on my daughter. Truthfully, I’ve felt a little guilty about stepping away from advocating for others. So my first reaction to finding your blog is this: I am really happy to see that the next generation of parents of children with special needs has advocates and leaders like you.
Re the Huff Post comments: I think that you have to consider the source. A fairly large number of the people who comment on the Huff Post appear to enjoy being oppositional, regardless of the topic. Consequently, it really isn’t about you, even though some of the comments were outrageously personal; it’s about them. You’ve already given their comments more of your energy than they deserve.
I have often wished that the disabled community had a single, pithy, unforgettable word to use to describe actions, comments, beliefs, attitudes, etc., that clearly come from place of ignorance about or bias against people with disabilities. A word with the power of the word “racist,” or the word “sexist,” or the word “homophobe.” If I knew what that word was, I would apply it to many of the comments in the Huff Post.
You have so many good points here that I don’t even know where to start, so I’ll go backwards–“ableist” is a word but not a lot of people know it. We need a better word. And thanks for feeling good about the baton being raised–I’ll look forward to passing it along some day too. Thanks for all that you did. Because you were there, I am here!
Thank you. I do feel like I’ve passed the advocacy-for-all baton to you and others, including some of the younger families that I see at my daughter’s day program. I have to say that I learned much of what I know about advocacy and parenting a child with special needs from other, often older and more experienced, parents who became my friends and mentored me.
We definitely need a better word that “ableist.” You’d have to explain it every time you used it, which pretty much voids the “short, pithy” criteria. I’ve watched with horror as the word “retard” and its variations have reapppeared as an insult in our culture. I thought that we won that battle a long time ago, yet here I am waging the same battle again. I keep thinking that there must be a way to use that word in a way that puts the shame and stigma back on the person who uses it as an insult…. But, again, I just haven’t been able to find or create the word that I want. As a former lawyer, the best that I’ve been able to do is not short or pithy; it is simply to say, ” Your words/actions/attidude/beliefs constitute discrimination against people with disabilities.” Very effective legally, but not as short, pithy, or unforgettable as telling someone that their words/actions/attitude/beliefs are “racist.”
Take care and be well.
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Thank you so much for taking the time to share such nice thoughts. You’re inspiring me to get writing again–I’ve had quite a year and it’s fallen to the side. But thank you!