When our second son, Danny, was born — with Down syndrome and a host of other medical challenges — I created Ocean and Stars blog to share information about his development with family and friends. I also hoped that the blog would have a broader educational effect on issues related to Down syndrome. It was partly due to my enjoyment with Ocean and Stars that I decided to get back directly involved with Papyrus News and move it to a blog format.
Now that Danny is almost six months old, we are increasingly paying attention to issues related to his physical and cognitive development, including the development of communication skills, language development, and (pre-)literacy development. That puts me in a quandry — what do I post on Ocean and Stars and what do I post on Papyrus News?
The quandry is not only because the content issues that I may be addressing on Ocean and Stars with professional issues of interest to Papyrus News readers (such as language development, literacy development, social inclusion, use of media, etc.) But also because, for me, part of the success and joy of Papyrus News over the years has been the way it has allowed my own personal voice to be expressed. I would hate for Papyrus News to become a dry technical outlet for narrowly defined professional issues, with all the things I really care about personally discussed on Ocean and Stars.
A couple of days ago I was at a fascinating presentation on teaching sight reading (reading by recognition of words rather than by sounding out) to babies with Down syndrome (age 0-3). I’m still digesting and thinking about the presentation, and as I do so, I’m not sure where to write about it. This is exactly the type of information I want to have on Ocean and Stars–to be accessible to the community of people that are interested in Down syndrome–but it also overlaps so much with what I would ordinarily want to talk about on Papyrus News, as it makes me think about issues related to early literacy development (and, to a certain extent, even the role of media within it.)
I haven’t yet written about this, but I did write, on Ocean and Stars, about a more general issue of evaluating early intervention services for children with Down syndrome, using an analogy of evaluating the impact of computer use in schools.
This of course is only the beginning. There are so many other issues related to Danny’s development, and the broader development of children with Down syndrome, that intersect with my research issues prior to Danny’s birth. What about bilingualism and multilingualism? What about sign language? What about assistive technology–or broader uses of technology for social inclusion? What about the social context of education and how it mediates diverse people’s access to language and literacy development, or technology access? How will I manage, and distribute, discussion of these issues between Ocean and Stars and Papyrus News? Something for me to think about.
Papyrus News 
You are not alone in this quandry, whilst I don’t publish a newsletter at all, the experience of having a son with special needs and autism also blurs in my professional life.
I am a case manager in the disability sector. I am specialising in positive behaviour support at them moment. While right now I am working with people who are being deinstitutionalised, I can’t not use my own experience when I think and communicate with their families.
In every context of my work I notice it, when a collegue asks a parent who is complaining if they would like ‘respite’….when management talk about how people should do this and that and have no idea of the overwhelming burden (not the right word!)and can’t see that they are only a small percentage of that work.
When I have to refer myself for a service and call 20 times to catch them there! (Never ever do I make my clients do that now! I insist the referral is accepted by me, unless the clients want to do it of course)
It is a line that for me has blurred, is that a positive or negative thing? perhaps positive for my clients, however for me…I see what we are doing not right and how powerless I would be trying to make those changes…or that perhaps I only have the strength to manage what is on my plate now. When I talk to my sons therapist I know what they are thinking, I have heard so much of it before. I am also critical of services and of course want the best…which is not always available. And when I am like that the professionals who I work with forget I am a mum and have feelings around all of this too.
I think I have gone on a bit here, but I guess I just wanted to say that managing the two seperately is impossible. You can’t throw out the literature or knowledge in your head, nor can you leave your family behind and forget about the similar things that link together with your professional experience.
Cheers
Jazzah