Tuesday, July 26, 2011


I was reading tonight about ipads. A number of kids with special needs have been getting funding for ipads. They are an amazing asset to the life of people with disabilities - especially when used constructively to enhance living and learning for the individual.

It made me think of this:

Our family thought the TTY or telephone typewriter was fantastic. Suddenly my sister who is profoundly deaf could phone a friend - so long as they too had a tty. The technology must have had teething issues cos I recall her tantrums and banging it on the bench when it didn't work. Still it turned out to be just the edge of it all.

If I go back even further of course there was her hearing aids. First int he 1960s the ones with a sound box that you slung around your neck, then later on the ones where the battery nestled behind the ear - and whistled driving us and its wearer crazy. I remember my sister's annoyance and embarassment about it. Still she looked pretty young and cute if I look back at our childhood photos.

Then in her mid 20s she got married. The house she and her husband (who is also hearing impaired) bought had a doorbell that was rigged up to a light - so it flashed when someone rang the bell. Ingenious we all thought. Not long after my sister had her first child - and a battery that vibrated and resembled a plastic tampon was set up - again attached to a lamp. You popped the tampon like piece under your pillow and voila - if the infant woke up crying - it started to vibrate so that you woke up too. Ingenius really but still not a patch on what was to come.

The first mobile phones were clunky and large. My sister was living her life with her husband and kids in QLD by this time so I can't recall when she got her first mobile phone - but the vibrating and texting opened up a whole new world for her - it made social engagements so much easier. We didn't have to rely on the National Relay Service all the time but could text freely - anything from important news if someone was ill to celebratory messages such as birthdays and so on.

Then the 90s came and with them the internet and email. Wonderful stuff. My sister would email Mum every day at least once often more. My sister loved ICQ (?) an early online chat site. And then less than 10 years ago comes facebook. Now my sister is very much part of the deaf community. Her culture is a deaf one. In many ways she grew up an alien in the hearing world. It wasn't easy but as I have said before she is a strong and capable and wonderful person and she managed. The impact of some of these things were though that her literacy and ability to read social cues (tones etc) was not as strong. As an adult if she had an important letter or email to send she'd get Mum or one of us to proofread and edit it for her. Computer technology has had a significant impact upon this.

My sister becomes a Granny!

My sister has never really been that involved with current affairs for example - she has felt excluded from it - even though our family loves a good political debate - she was excluded by language - she isn't comfortable reading a lot including newspapers and closed caption news is relatively new. She found out about events through the word of sign in the community and from her family. So more material was 'filtered' for her, ie she was exposed to less variety than many hearing people might be.

I noticed this more specifically just this week on facebook. My sister has a slapstick ribald sense of humour and posts things on fb that amuse her and her family. She also posts material about the deaf community such as the current campaign to nominate Auslan as primary language when the governemnt census takes place next week. She has shared a couple of my links related to disability and down syndrome. She is able to participate in social nuances in a way that I think she has been excluded from in the past. So this week she posted a link which I did not get to see. She must have taken it down but my husband told me as soon as I got home from work that he had commented on her link because he thought that it was racist. He told me straight away because I guess he was worried he'd offended her but at the same time had felt he needed to express his viewpoint. He said that a couple of her friends had already picked her up on it. And so the post was gone when I went to see what the fuss was about. And it made me think about some of the benefits of technology in helping improve our cultural literacy. Understanding the social mores and nuances is important to our sense of belonging - of not being alien. My sister at nearly 50 is learning some of these subtle things hopefully in an inclusive and positive way via the technology. She is adjusting her boundaries and expanding her world view -as we all are but in her cae I feel that it is actually a totally new experience whereas for many of us it is simply an extension of precomputer/fb communications. Amazing huh?

Before the twins were born in 2004 we had a bulky pc upstairs in our attic and dial up internet. It meant that outside of work I rarely checked the internet or emailed anyone. It must have driven my Mum crazy cos she and my sisters all communicated regularly using email but I was more recalcitrant. For Mum it was a way to keep in touch with us all - with her daughter who lived nearby but because of her deafness couldn't just ring up daily like hearing kids could and to keep in touch with me - her 'baby' who lived 1000 kms away. She used to love talking about megabytes and jpegs and even did a course at Gympie TAFE. I used to put her on to Phil for that sort of talk - it was beyond my understanding. Phil got his first mobile phone that year too -(I got mine a bit before i fell pregnant). We also bought our first digital camera when I was pregnant - and you can see from this blog how much I LOVE that piece of technology. That year we bought a laptop with wireless connection.

With my thousands of photos of the twins on screensaver slideshow there was a time at our old house when those brats would be meant to be eating their meal but instead their eyes would be drawn to the laptop on the kitchen table - and the passing images of themselves! It got tot he point where i thought I might be creating two painfully vain beauty pageant kids so I used to make sure it was turned off at mealtimes!!

I can't recall exactly when it happened but it was totally by chance that one day I decided to google DS. From there I found a wonderful and amazing group of moms (literally - they were all US) who blogged about their experiences. Many of these are the women who also so generously shared their parenting experiences in the wonderful Gifts 1 book. Bits of Betsy was one of my favourites - that woman can write! One of the first of her posts that I fell in love with and still adore was a short 'medical' hitlist definition of what it means to have DS followed by her own personal description based on her daughter - the beauty of brushfield spots etc. Michelle at Blueberry Eyes featured largely then too - I had no concept of life for a military wife let alone a military brat - and her daughter truly did have the most amazing blueberry eyes - they were stunning. Then there was the 'hub' Always Chaos around here. Rebecca was a stalwart - an example of an organic hub for lots of blogs and many news items relevant to DS. I still miss reading what she and her beautiful Miss E are up to. Occassionally I stumble upon them in this virtual town and it always makes me glad to see how well they are looking. There are others as the list grew such as Jan with the so sweet Nate, the delightful Bradys Bunch and how could anyone not return to read how Emma Sage and her Mom were going? So for me I found connections and learned about other perspectives through this format. My cultural and social literacy was enriched. These days the always uptodate and user friendly NSW DSA blog is the one I check almost daily.

On April 6 2006 I began Shamptons. My online private/public life. It is my online journal. My pass to participate in blogland. And I love it. It is a place to sort out my feelings, to share our fun. One day I hope the twins will read it - it has become my gift to them. A chronicle of their childhood. So many events are recorded here. I look back on my post about Hannah's OHS and Kit getting meningitis and I can still feel some of that raw emotion. I sometimes think of editing that post now - of updating it with the gift of my current position and perspective but then I hesitate - those emotions were valid at the time and shaped the future and so I let them be. Like other posts too that I look back on... what is here reflects only that moment and not necessarily future moments at all. This little piece of the cyberworld helps keep me sane. It helps me to 'breathe'.

I joined a forum too - a US one - it is a big pond but I found it useful to go and browse through the posts. to learn the lay of the land there. Then one day I got a pm from an Aussie Mum - she was starting up a forum for us down under. I am so glad that Cas made that effort. DSDU has been like a family lounge room for me. It was where I could go to seek understanding and advice. Of course there have been some fights too - hopefully this forum will continue and go from strength to strength in bringing families together - for that way we are better able to lobby for our children and as these kids reach adulthood I am hopeful that such forums (or whatever the technology of the time will be) can be used by them to advocate for their own interests - supported by us and others.

Facebook has challenged the forum world though - DSDU is going through a bit of a lull - and fb is booming. I love the immediacy of fb. Unlike the forums it integrates elements of our worlds - so rather than discussing DS life as a separate thing when I am on fb I can include it for my relos and my friends as well as those who are part of the disability community. It is a more diverse medium. I can't be as personal on it necessarily - especially as some of my ex students are my friends on it!! For example one of my students from Kuwait volunteered at the Buddy Walk last year. She has a sister back home with DS. I thought that that was such a beautiful thing - I wished I had made it to see her but heavy rain had put us off so we didn't go in the end...still from fb I got to see her smiling and relaxed photographed with a child who has DS that I have met a couple of times through the DSAssociation - and that was a treat.

And here we are almost up to date. For his birthday last year Kit really wanted a DS. We knew Hannah would not necessarily be able to use a DS as well due to her language/reading level - so she got an ipod touch. Both brats were very happy. This year Hannah wants a DS and Kit an ipod touch - maybe we'll just get them to swap devices for 12 months!!

Then the ipad came out. Our SAS case manager helped us to write an application for funding to get one to assist Hannah. Her kindy teachers supported our application. They had been fantastic with Hannah and had seen how useful the smart board in the classroom was in enabling them to more accurately assess just what Hannah knew and they saw that she was very adept at using it on her own as well. So this year she started year 1 with an ipad. It has been a trial and error path. Some of that is due to her teacher - she is no doubt still getting her head around what the smart board can do let alone the ipad for Hannah. However slowly with encouragement from myself and the ST Hannah's aids are using it a little with her and the spec ed teacher too. It opens up so many opportunities for Hannah and I am certain that as we get more familiar with it, and the staff can access more professional development on its use and even more great apps become available...well it truly is a brave new world isn't it?
One of the 'creations' Hannah has made with her ST on the ipad

My dream of modern classrooms - revolutionary places where the focus is on the child and not the teacher - where the learning environment is better able to meet the individual needs of kids like Hannah as well as the very brightest of kids is perhaps not so very far away. Of course there is always the human factor but the ability to differentiate work and to work collaboratively would be wonderful things for teachers to be able to do. In my own classroom I am very aware of how hard this can be but I am also aware of how rewarding it is when it happens. It isn't that the fundamental purpose of education is necessarily changing - it is simply that we can and should be always looking to make it better.

No comments: