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How To Crowdsource For Special Needs Children

Posted Oct 11 2010 6:50am
The buzz word in social media is " crowdsourcing ". A company has an issue or a question, wants to make a change or fill a job or position ...they crowdsource it.

It means they go to the people. They don't call in the high paid "experts", they turn to the average Joe (Or Jane) for a solution.

I have been doing that for years. I dare say, we (as caregivers of children with special medical needs) all have.

Going to the crowd is nothing new to those of use dealing with children with complex medical issues. We call them message boards, list serv, yahoo groups and forums and I am gonna say it, in my opinion we are experts, at least on our own children.

Now I am a fairly educated person and I can recognize the difference between medical advice from a professional (Doctor, Nurse, Specialist) and real-life practical advice from another parent in a similar situation. But trust me, if I need to know how-to work or troubleshoot a particular special needs medical equipment who am I going to call? a Pediatrician? a Physical Therapist? or my friend on Facebook?

how to crowdsource for special needs

Granted, I may put in a call to the person who sold or rented that particular piece of equipment, but on a Saturday at 8PM I am not likely to get a response. My friend in Maine however may be awake and have a couple of suggestions that will help me get through the weekend. I just crowdsourced.

Some of the most useful advice I have ever gotten regarding feeding tubes have come from other moms, not from the doctors or nurses whose job it is to "teach" me. As a matter of fact, on more than one occasion I have taught them a tip or trick I learned -- online.

We, the parents, have known for years that crowdsourcing a medical issue is likely to bring us a solution and more often than not differing opinions on how to deal with a problem. In which case, I can then take all of these possibilities and run them by my son's doctor. It's called  participatory medicine . We can discuss it openly and come up with a solution that works for both of us.

By now my son's doctors are used to me having suggestions. They often comment on how involved I am in his care, as it should be. Some are surprised, but most are glad that I am interested enough to research an issue and seek a possible solution on my own time. Let's face it we can never have enough time to pick their brains during a 15 minute clinic appointment.

I say if it is good enough for The Gap or World Renowned The Mayo Clinic , it's good enough for me. Because frankly, sometimes it does take a village .

I love my crowd. If you are new to world of complex medical needs I highly suggest finding a group of caregivers you trust to bounce ideas and solutions off of. Facebook or Yahoo groups are a good place to start, even Twitter but most health issues, disabilities, conditions or syndromes have their own websites with a forum built in for just such discussions.

Note: Any suggestions or advice found here or on a message board should not replace your own doctor's medical advice. The idea is not to ignore your child's doctor, but rather to open a dialog about their care. {Personally, any medical professional who is not willing to listen to my concerns is probably not going to stick around long. That is what second opinions are for and a discussion for another day.}

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