Actress and comedian Amy Poehler's uplifting Facebook page Amy Poehler's Smart Girls shared the Super Power Baby Project to her 1 million fans.
The reach and impact of the Super Power Baby Project continues to expand, nearly a year on from publishing the Super Power Baby Project book. Author, photographer and mother Rachel Callander has presented at two medical conferences this month - sharing the images and insights of the project with hundreds of medical professionals and students.
The strong message of the presentations, as in the book, is that all children have much to teach us about themselves and ourselves that is to be celebrated as truly exceptional. Rachel explains in her 25 minute presentation:
"The words we currently use and have been given (perhaps in part because of the medical profession) to describe 'disabilty' are: Retarded - incompatible with life - abnormal - developmentally delayed - dis-abled. In our current culture, sadly our first thoughts that come to mind when we see or meet someone who looks different to us, is ‘what's wrong?’ These words take potential and even ability away. What we associate with the word disability actually shows up the deficits in our culture that does not: accept - encourage – celebrate all humanity, no matter what it looks like. We are quick to place value judgements on a person, often before they are even born, before they have a chance to reveal their unique character, before they can enrich our own experience of life."
"These children are the ones that will push you as professionals to your absolute potential. They are the ones that will inspire cutting edge therapies and technology. These are the children that are capable of incredible transformational change in their families and communities if they are accepted for who they are and their unique abilities.
You are the ones that will travel alongside these families as they embark on a life completely different to the one they had imagined. It is hard. You will be with these families in an incredible capacity. If you can help them to see potential and development, the parents will see these things too and it will help greatly in building a positive relationship with the family. You are being leaned on heavily to provide answers to often times unanswerable questions.
The most important thing you can share with parents, from the beginning is to use strength based language to balance the many aspects of care that are hard. Children, including those with disabilities change and develop. As parents we develop as our children grow and change, as a result we can become more skilled through letting the child lead and by finding and seeing the things they do as abilities. With these children conventional milestones, growth charts and measurements and the “normal” way of doing things just are not applicable. Look at what’s working, what the kids like; and encourage parents to talk about the things that make their child unique. This will give them much needed hope, energy and perspective."
Response to this message has been resoundingly positive. The focus of consultations and assessment forms are already changing towards a more strength based approach. The Super Power Baby Project message is being heard. One of the country’s most senior and well respected neonatologists, for example, said publicly after Rachel's Perinatal Ethics Symposium presentation that her talk should be compulsory for all medical students.
Two weeks following this Rachel gave her second presentation; this time to said medical students. We received a lovely message from one of the 150 students at the Medical Education Conference of Aoteroa: "I find your ideas and approach to these amazing (very photogenic) kids incredibly inspiring and thought provoking. It’s easy to get stuck in old routines, and the Super Power Baby Project reminds us that sometimes the most efficacious approach includes much more than just diagnoses and potentially limiting labels."
A full video of Rachel's 25min presentation will be made available soon as an education tool for medical practitioners all over the world.
Sitting outside on the patio at happy hour at our accommodation in New York, a friendly "hello" from another patron reaches me, this is rare in a busy city of 8 million. 'How are you?" is my typically kiwi reply. "Are you Australian" he says. I laugh and tell him, no, I'm from New Zealand. "So am I," he says, "I'm from Dunedin!," "I come from Timaru" I say laughing!!!
Article originally posted on Little Treasures Magazine.
I’ve seen a table outlining funding for children with disabilities and my overall impression was that we should enjoy all of this wonderful support while Zeke is a preschooler because once he turns five, government assistance will be a lot more difficult to come by.
Those in the know tell me that resources are pretty stretched but we never get that impression from the therapists we see through Child Development Services. Our lovely team always give Zeke their full attention and you would never guess that they still had millions of other kids to see that day.
So I’ve been appreciating all the help we’ve received, feeling like we’re being eased ever so gently into our new role of parents-of-a-child-with-a-disability. We’ve got plenty of time to learn the ropes before having to become Ezekiel’s advocates in a few years, potentially fighting for our son’s right to attend our local school and clamoring for any teacher aide assistance we can get.
At least I was feeling like I didn’t have to be much of an advocate for Zeke just yet but now I’m not so sure. We went for a catch-up visit with Zeke’s paediatrician a few weeks ago and I was pretty disappointed when we received the report in the mail.
The paediatrician’s letter was headed: “Problems: 1. Trisomy 21…” Erm, last time I checked, Down syndrome wasn’t a problem to be fixed. Trisomy 21 is a part of who my son is. He has three copies of the 21st chromosome, just as he has big blue eyes and two dimples on his left cheek.
Perhaps it sounds like I’m being overly sensitive. Surely it’s a matter of semantics; “problems” is just a word and a relatively inoffensive word at that. But I don’t think that’s good enough. Words are powerful and important and I don’t want my son to be limited by such language – particularly not by the health board that has done such a wonderful job of supporting him so far.
I think Zeke’s paediatrician needs to have a look at The Super Power Baby Project. Photographer Rachel Callander and her husband Sam grew tired of the language of deficit that was used to describe their daughter and they began to talk about her in terms of her strengths – her super powers. Rachel has created a beautiful book with photos of dozens of New Zealand children, the accompanying text highlighting the super powers of each child. Truly inspiring.
And so I find myself compelled to advocate for our little guy already. I know that the paediatrician meant no harm; indeed, further down the report, Zeke is described as “progressing well” and the doctor has “no concerns at present”. However, I feel that I need to write and request that a small change be made to the Paediatric Service’s report template.
My child is not a problem.
It's a pretty incredible thought to consider; the Super Power Baby Project is in Libraries all around New Zealand. Who knows how many people have read through the page of the book learning about the families represented and the wonderful their children are teaching them and their community.
We have been told by the library in our home town of Timaru that they have seven copies of the book and they are often fully subscribed! This shot at the Auckland Library by Gareth made us very proud.
We received this moving and inspiring message from a friend:
"Your work with the super power babies project has been amazing and your words have had me thinking about my self and my struggle with Aspergers. I have struggled over the years with different parts of life and trying to do my best to understand social aspects and most of the time I have been doubting myself and bashing myself because of my disability. Now I have been trying to look more on the abilities I have instead rather than feeling helpless and wishing i was something else, to have positive impacts on others through my gifts. I have been following all you videos and posts, and your daughter has had a profound impact for many children and even myself and I am learning to see my self differently, trying to look at my self better. For a while now I have been using my skills with costuming to help others and to give others joy, I have been volunteering my time to charity events such as Special Rigs and Ronald McDonald house events in my costumes."
Genetic counselors do an amazing job, helping families to understand what their child's diagnosis might mean for their lives. This message was sent to the Super Power Baby Project Facebook page:
I just wanted to write and tell you what has just happened at work with your book today. I work at clinical genetics in South Australia. I have been following your story for a while and got my book this morning. I took it to work and we have been reading over lunch. The reaction by one of the clinical geneticists was a little unexpected. I looked up and saw she was crying. She was just amazed and loved the aspect of positivity and was very overwhelmed by it. (in a good way!)
She has asked that we buy a copy for the work place now and the genetic counselors are talking about ways that we can change the way we talk to families to include a time where families can share their child's "super powers" as these things are just as important (to me probably more) as the medical information.
So overall - thank you. For a group who work with children like this everyday, you have showed us another side.
Clinical Genetics team, SA
We see it as really important that the Super Power Baby Project is in as many stores as possible so that people just stumble upon it. If book lovers pick the book up and flick through the images and stories of ever inspiring super power children they will have the same realisation as many other who've seen that "There is an important and profound message captured in this book. Each of these kids seem to have a significant influence on the people around them."
How incredible is that the Super Power Baby Project can find its way into the hands of families throughout the globe thanks to the sharing hearts of supports of the project? Good stuff Fiona and John.
" It is a stunning book - beautifully presented and put together with such grace and sensitivity."
Educators play a critical role in giving children the best chance to fulfill their potential. It's great that the Super Power Baby Project to help to inspire such caring, capable and important people.
You know something awesome has happened when the courier drivers want to have a look at the mysterious packages they are delivering all over town.
A special thank you to Fastway Couriers (Christchurch) who undertook the massive job of delivering books to about 1,000 homes at a discounted rate because they believed in the project. THANKS!!
The Super Power Baby Project was launched yesterday and already it is making an impact in Oamaru in the South Island of New Zealand where it made it to the maternity ward and school and the library. Incredible stuff from all involved, we love the way idea spread.