[blindkid] Preserving memories

Tue Jan 3 04:41:08 UTC 2012

I suggest you explore all options-- as counter-intuiitive as it may sound, I have found photos and videos to be EXTREMELY useful for our daughter with no light perception. 

First let me say that Kendra, age nine, loves to record things herself.  She has recorded literally hundreds of introductions, most on her braillenote. They are of people introducing themselves and telling what they look like, what they're wearing, and just saying a few other words-- maybe where they are recording or what they like, etc. Kendra then saves each under the person's name and reviews them often. These are like her own personal photos of her friends. Frequently she knows her friends hair and eye color better than anyone else, all from the descriptions, and she'l point out which friends sound alike...

Kendra also has numerous other recorders, mostly small digital ones and she records all sorts of things with them, including stores she makes up, which she also likes to write for herself on her braillenote.

Now back to the photos and videos. Kendra likes to be in photos and she has learned to respond very well to cues to face the camera so she blends in well. Chin up, slight right, eyes a little wider, a little less smile, etc. She likes being in photos and knowing she fits into them well. Beyond that tough, she likes to hear about the photos and what is in them. She likes to "look" at photos in person no matter if they are prints as such or on a computer, and she likes to have her finger put in places on the photos to hear what is where in the photo, right down to "here us your head, and here are your shoes (etc.), these are the red ones your grandmother gave you for your birthday. If I look at her face when I tell her about these things, she reacts a lot like her brother and sister do when they see such things for themselves... 

Any photos of any event may also offer her additional information about what happened and when, no matter if I can remember it for myself or not. I just break out the pictures. High res pics are great because I can often zoom in and answer more questions. The one place where we get jammed up is when we don't know all the kids in a picture, say as a school event. That is where it can be handy to get a teacher or friend to help record the information somewhere. School yearbooks have been a problem, for example, because so far the Elementary School books often have various candids without names listed...

Videos offer less picture detail but they show the movement obviously, and something else, the audio can sometimes be the same thing she heard when she was at the event. Often, I'll roll tape for an hour or more at an event and not stop it at all. This may sound like the makings of some painfully dull home videos, and I expect that is true, but I can edit them down later and this gives a continuous soundtrack for Kendra to listen to.

Sometimes instead (or as well) I'll make a high quality audio recording with a digital recorder. They range on cost from probably $30 or $40 for a decent one to $200 for a really nice one and the files produced cost pennies to save on a hard drive and to achieve on disk. I have actually done this with all my kids, but more so with Kendra. If they are important, keep multiple copies. Same thing with all files-- photos, videos, audio... One drive crash, or a fire can loose every single file. Leave a copy at work or your mom's house or in a safe deposit box.

One of Kendra's favorite gifts this Christmas was her very own video camera. It is tiny and inexpensive ($30-something) and yet records standard or high def video that plays easily on her computer. She likes to have the videos she shoots herself described as they play back, and is anxious for pointers as to how to get the right thing in the frame. I actually find it surprising how much she gets in the frame, though I think she actually likes the audio more. Still, she loves to ask what is in the pictures. She wants to know what was happening with plain audio recordings too and gets frustrated when I cannot always remember what was happening without visual cues. This was actually not her first video camera-- one from before gave up, and she missed it. These things really are important to her.

Apart from recordings, Kendra is the worst about wanting to have toys and other objects from her past produced on demand. Well, again, photos take minimal space and at least they can help us describe things, but nothing beats the actual object, so as much as we're able, especially with smaller items, we try and box up much of what might otherwise be thrown out. I still have the (rather large, but flat) sign from when she was born that we put in the front yard announcing he birth. For various birthdays, I have kept deflated mylar balloons, especially ones that have a special shape, and folded them up to bring out later. We simply keep a lot of stuff for her and deal with the clutter.

Just today, I was up in the attic digging out some special memories-- a couple of toys from when she was probably three or four. She'll play with them for a while and then I'll store them away again. If you're super-organized, sure you can make tactile scrap books and scrap-boxes too, but as long as you have good photo & video records kept, you can also have a decent chance of figuring out where the saved items were used and when. It may sound over the top, but I plan to keep her crib stored somewhere from now on, as well as several other key pieces of baby furniture. Some pieces are disassembles and flat in the attic, but yes, I do want her to have access to more than a description of those.

As to "mommy guilt"-- well, maybe I'll rename that one "parent guilt", if I may-- I have three kids from 5 to nearly 18 (later this month), two of whom have typical vision, and I must say that there is parent guilt for things I got rid of which the sighted kids want back too. There is always going to be some of that unless you can warehouse and archive every memory from every moment of every day, so don't figure that is possible to manage for any kid, no matter what sort of vision they have. With that said, I can fit an awful lot of storage bins full of memories in the attic for many years to come. The stuff can always be thrown out later, but once it is gone, it is gone...

Hope that helps a little,

Richard

On Dec 26, 2011, at 4:20 PM, Jennifer Weisner wrote:

> Hi everyone, this is my first time posting to this listserv, but I have been reading it since our son Hudson was born in July of this year. Hudson's eyes did not develop correctly in utero which caused his blindness. It has definitely been a roller coaster of emotions since his birth, but we have found acceptance and are enjoying our sweet funny boy. We have services in place for him, and he seems to be thriving. 
> In looking back over our pictures from Christmas today, it struck me that Hudson won't be able to see them (I'm still getting used to how things like that just catch me by surprise). We did record a few videos, but I didn't think about doing something specifically for him so he can listen to it later. I have always made photo albums for our older daughter, and she loves to look back at them and talk about past events. I would love to hear your ideas about how I can preserve memories for Hudson. Maybe videos where we talk about the events of the day? Or some sort of box with tactile items related to the special occasion? I'm sure you all are a wealth of knowledge, so please share it with me and help ease my "mommy guilt"! Thanks so much!
> 
> Jennifer Weisner
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