As we all know, I started this blog some years back as a means for other women, and men, with spina bifida to find at least some information on what it meant to be a parent with the disability going through a pregnancy and raising a child. As we also know, there was precious little to no information like this at all available for myself and my husband to find when we were setting out on our journey through pregnancy and parenthood. No one, nothing out there to answer any of our key questions. Questions like:
• Would I be able to walk throughout my entire pregnancy, or would I require a wheelchair by my third trimester - or before?
• Would my already weakened legs and overly curved spine even allow me to carry a baby to term?
• Given my decreased sensation, would I be able to detect when I went into labor?
• Assuming that I could handle a pregnancy, would I be able to have a natural birth, or would I have to have a C-section?
• What were the chances that our baby would also have spina bifida - or any other birth defect, for that matter, given that I have spina bifida myself?
Then, beyond the actual pregnancy and birth - then what? Where could we find some information - maybe some first hand accounts? - of families with one parent having spina bifida and successfully getting through the day to day joys and challenges of raising a child? How to handle such things as mobility issues, for example? Wasn't there anyone out there who we could learn from?
No. There wasn't. And now, through the many people I've heard from through my blog, I'm saddened to know that there still is a gaping lack of knowledge available for the disabled adult wishing to start a family.
DPPi, the UK based information charity on disability and pregnancy, is spearheading a 3 part project entitled the Empowering Parents Initiative. The first part of the project has already been realized - a full report published in June 2009 entitled The Maternity Information Gap for Physically Disabled People.
What? Really? You mean an organization actually took the time to find out why there's such a lack of information for adults with disabilities (both physical and mental) wanting to start a family? And what sort of information and resources these adults would have liked to have been available to them? With an aim towards having said resources available for others in the future? I am speechless... utterly speechless and very impressed.
You can read the full report here.
The second and third parts of this project's aim is to produce two guides for physically disabled parents to be published later this fall. I am thrilled to be part of the Steering Group for these upcoming guidebooks, getting a chance to contribute my own ideas on what is necessary and not so necessary to include in its pages and simply to make sure what's produced is the best information out there for expecting (and expecting to expect) parents to absorb.
Finally! A wonderful organization has made it a priority to help adults with disabilities in this most fundamental way. Bravo, DPPi! You are truly amazing, courageous and - as Sweetie would say - GREAT! I am proud to be associated with you in even the most broadest of terms. Can't wait to see what you come up with next!