errantdreaming-blog

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Its been a good couple of days! Started putting into place a few new organisation and identifying ideas around the house. Starting with labels to get everyone used to putting things away in set spots. I don't expect the kids or the husband to remember where everything belongs so this is mostly for them. i will work on memorizing it all and adding tactile labels to anything that needs it.  Post it notes for now, something more permanent once we've figured out all the wee kinks. 

Next up is organizing and labeling the pantry and baking cupboard. I really want to be able to keep baking. Its an important skill set for me. Baking is one of those things that can show you care about some one. Everyone loves food and who doesn't love it when some one makes something delicious for them? It makes people happy and I like happy people! so being able to bake is important.  Also got new measuring cups and spoons today that have the numbers raised up  so i can feel the size. There pretty cute too! 

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Not feeling the best today. Kinda feeling weighed down by all the changes happening and changes that will happen. 

I’d really like a holiday. actually, I’d like two. One family holiday and one with just me and the husband. I know he could do with some time away and there's been a lot of tension between us recently. He has his own issues going on with depression and anxiety, I’m so proud of him for getting help and of the changes hes making to be healthy again. I’m doing my best to be supportive, I know first hand how hard it is to be in his position and I know that this new time frame with losing my sight is really affecting him.  For me I know that if I want any success and happiness in my  life, then I have to accept losing my sight and the rest of my life as a blind women. I've had a 26 year head start on my husband with coming to terms with it, I've always known this would happen and lived with low vision. Husband is angry this is happening, hes stuck on the this isn't fair and the why is this happening, which is all part of the process of coping and completely understandable. Its just taking a toll on us as a couple. Hes snapping at me, short tempered with himself and the kids, saying things like whats the point and who cares. I feel like I need to be strong and support him through this, lead by example, it will all be okay because I’m okay right? but at the same time I really want to be able to lean on him.  Hard to talk to him with out feeling as though its bringing him down.  After I lost the sight in my left eye and it became more real to me that I would go completely blind one day, I got stuck on the why and this isn't fair and being angry and hurt and defeated by it - I was self destructive in all areas of my life, friends, health, study, work, the only thing I did well at was raising my son - which i owe to being so adamant that I will do nothing to ever harm my children. The last three years have been a massive step in healing and coming to terms with this as part of my identity and shaping how I will live. I've done anger and currently overall, I’d say I’m sad and determined. I've accepted that this is happening, I’m sad about it but what can I do to make this work. What can I do for myself, for my husband, for my kids and for my family and friends to have the life I want and the happiness that I deserve.  Currently its a hot chocolate with eskimo lollies and finishing a report for uni followed by cuddling up with husband for the night. 

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Mediocrity is not an option. If I want to be valued and taken seriously, by myself and peers then I need to strive for excellence. I cant just fluff my way through things any more and hope that no one notices how much harder things are. Pretending my low vision doesn't have such a huge impact on my life is no longer an option. Its going to be obvious and kinda hard to miss with a cane and a guide dog. 

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In some ways, being told that the time frame we thought I had for losing my sight is a hell of alot shorter has been a good thing.  1. I know exactly what i want to study, how to do it, if I can do it, if I can work in my chosen field without sight  and I know that I’m not wasting time and money on this. 2. Really sets out the important things in life. So much has been re prioritized or dismissed. Long term and short term goals have been changed.  3. Upskilling, Learn as much as possible now. Prepare myself, my kids and Josh. Get systems in place around the house, get assistive technology, learn how to get about on my own.  4. Josh is finally motivated to get his licence.  5. I can literally feel the love from my friends and family at the moment. Its wonderful.

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Noahs excited for #bikkieday we are making 200 biscuits to rause money for guide dog appeal. This little twerp has organized this all by himself. Im so proud of him.

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When I lose my sight completely, who’s gonna take photos of my kids? 

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Company Designs Dolls With Hearing Aids, Birthmarks So All Kids Can Have A #ToyLikeMe

A toy company is taking a step in the right direction.

After parents of children with disabilities called for more diversity in kids’ toys through social media campaign, Toy Like Me, MakieLab, a 3-D-printing toy company based in London, announced last week that it will help make that a reality.

To see more of these gorgeous dolls go here. 

[errantdreaming-blog]

six - counselling

Had a chat with a counselor from the Blind Foundation today, went really well and I’ll be seeing her again in a few weeks.  I think the biggest thing for me, having had several instances of severe depression and knowing how easy it can be to get back into that head space is sort of preemptively taking precautions so that I don't. I know that currently things are okay, but the more vision I lose the harder it will be for me to cope. There’s a lot to wrap my head around and ts good to be reminded that we can do this as slow or fast as I need and that how i’m feeling and what i’m worried about are valid, regardless of how important they may be to other people. 

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Adjusting to using a cane. Its weird to see myself using  one and know that this is part of what other people will see when looking at me. I've always had low vision, but its never really been that obvious to people who didn't know unless I mentioned it. Using aids and assistive technology is something I held off on for as long as I could. I know that the way I’m viewed by people would be influenced by it and didn't want to deal with the negative stereotypes and ideas surrounding disability.  Now I really don't give a fuck what people think. 

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Last week was full on, had several appointments with the blind foundation and sorting out study options.  Had an appointment on weds where I got to try out some adaptive technology. Getting a desk top electric magnifier, a hand held video electronic magnifier, a lamp for at my desk, a new monocular and a magnifying lens with light for in my bag. Luckily for  me I can get work-bridge funding to help cover the costs. 

Its really helping me feel confident about Uni, feel like I have a shot at doing the workload now. The course I’m doing currently is all online via distance so I haven't had any problems with accessing it, just zoom and enlarge as I need it. Getting good marks on assignments too - an A, A- and a B+ so far. Keep getting marked down for spelling and incorrect APA referencing. Think I got it nailed on my latest essay though. 

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Its all go at the moment. So far this week I have had appointments with  a needs assessor, a mobility instructor from the RNZBF and talked to a councilor. I am waiting to hear back from their Rec and employment/study people. It feels good to be making these improvements finally and to get assistance with the all the things I've been struggling with for such a long frigging time. 

[errantdreaming-blog]

Five - Isolation

Today I was told that disability is isolating, that how disconnected I feel from people and the anxiety I have about travel and socializing outside of familiar spaces is normal. and common. and importantly, understandable. 

When I lost the sight in my left eye when I was 20, I lost any depth perception I had. I would walk into things, trip over anything low on my left side, struggled to walk in a straight line, crossing the road became stressful and going anywhere with people was a tiring and headache inducing experience. Going out at night was like being blindfolded and going out on sunny days used to leave me with headaches and squinting from glare. Low light or completely new places are overwhelming. I often don’t trust myself to get anywhere safety on my own, add my kids  in the mix and its not happening. I’ll stay home where its familiar and safe thanks.  So I stopped. Wouldn't go to the supermarket with out someone with me, too many people and I constantly feel like I’m in some ones way. Shopping online is easier then going into a mall. If I couldn't get a ride with a friend or get someone to walk with me I didn't go anywhere.  Socializing with friends got difficult, if it isn't on a direct bus route I’d rather not go. I hate being told just to bus somewhere. Busing sucks. It does. Being told to just catch a bus by someone who never uses the bus pisses me off so much. Try it with a child, a baby, no sight in one eye and extremely limited sight in the other. 

I cant see the numbers on the bus to flag it down. 

If its dark, then I cant actually see where I’m walking to and from the bus stop.  I don't trust myself to cross roads depending on how busy they are, there has been some very lucky moments. 

It can take ages. Its a 25 minute bus trip and a ten minute walk to drop my son at school. Would take ten minutes tops, door to door in a car.  Cant even read the little machine that tells you how much credit is remaining on my buscard. The other aspect of this is, I've never felt comfortable saying to people why I cant come some where or asking to go to a cafe that's more accessible to me. It feels selfish to ask that of people, who well, often never seemed in any way inclined to make any accommodation or acknowledgment that certain things, places or situations might be difficult for me. I’m not going to suggest we go somewhere not on a bus route because then I have to ask some one for  a lift and gosh, that's hard. It s hard to ask for something like that and not feel like a complete burden or like I’m taking advantage. But on the other hand, I want friends. I want to go out. I want to go to the beach (over an hour long bus trip away) I want to go explore the port hills and bottle lake forest and go hang out at a friends place. 

How am I meant to explain to someone that going to the mall can be so panic inducing that I feel physically sick? That going anywhere takes alot of planning and worrying if I've never been there before? Especially to people who don't and have never talked to me about what happened to my left eye or any of the problems in my right and the affects on every aspect of my life.  I am so lucky to have the friends and family I do now, there are some truly amazing people in my life. 

[errantdreaming-blog]

Four - something to remember

me "i feel like im letting him down and saxton" G "You aren't If there was anything I could say to convince you of that, well then your parental instincts probably wouldn't be functioning properly Feeling like that shows how much you care for them More than is reasonable, if you where reasonable about this you would know that none of this is your fault And it's exactly that kind of care that tells me that you won't let them down." Things I needed to hear today.

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My wonderful sister linked me an article today on a young women who is completely blind and applies makeup and films youtube videos. Was really awesoem to see and something I am so interested in. I studied makeup application and design from the D&A about three years ago. I did a bit of free lance work but stopped about a yeat after finishing when my vision started to deterioate. I have a few tricks and skills I'v picked up so that I can keep applying my own makeup and have greatly adjusted myroutine as it takes awhile longer to apply. Its awesome to know that with practise and trying out a few different ways, i'll still be able to apply it. Magnification mirrors and cameras are my best friends. I use a mag mirror to apply, then take a photo and zoom in to check I havent made any wee mistakes that I cant see in the mirror. Its worked well. Understanding my face shape and correctly being able to identify and feel different areas of my fac ehelsp too, it let sme know where to place product and how. Focus more on skin care now, then wearing medium-heavy foundations. I leave them for events/nights out etc and use MAC BB creme majority of the time. Pen eye liner is amazing, gel makes a mess and liqued can be to fiddly. MAC penultimate is my favourite, so easy to use and doesnt dry too quickly If I do make a mistake. Theres alot I'll need to practise, so I am able to do it without a mirror and without being able to see. I get my eyebrows threaded and plan to continue with that. Not looking forward to having to go to a hairdresser, I've always done my hair myself so that will be another thing to get used to.

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First lesson with a cane today! Mixed feelings about it. I'm excited about gaining confidence to go out on my own and feel more comfterble but still sad my sights deterioated to this point. Will be interesting using it with a front pack with my daughter strapped in, my 6 year old son on one hand and my bag for uni on my back.

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For anybody who’s curious about some of the adaptive tech you see on Daredevil, this is a real life (more complicated) version of the refreshable Braille device that Matt Murdock uses on the show. This one is called a BrailleNote, and can act as a computer in and of itself, so not exactly like the Braille display Matt uses. 

The finger-shaped buttons are where you type, and the Braille comes up below with tiny pegs that rise and fall to create the letters and words. The sound it made in the show was exaggerated - these are really pretty quiet to use; they make click-clacking noises similar to a regular keyboard. 

People who are visually impaired might use something like this as a screen reader to display text from the computer in a Braille format. However, unless the user needs it for work or school, or prefers a Braille display, most visually impaired people will use an audio screen reader instead. Typically, these are JAWS or NVDA if using Windows, and VoiceOver if using an Apple device. Audio screen readers are more popular because a visually impaired person doesn’t need special equipment to navigate the computer besides a set of headphones or earbuds, and it’s more cost effective. Also, even when using a Braille display, the user still needs a screen reader like JAWS installed on the computer anyway, since that is how the information from the computer gets translated, either to an audio or Braille format.

There’s also the fact that these devices are expensive if you try to get it on your own. Even just a refreshable Braille display - like in the show - without the computer-like aspect can cost around $2000 on the lower end and as much as $8000 for an 80 cell display that professionals might use. However, Rehabilitation Services agencies will often allow students and working professionals to apply to receive Braille devices for free if it’s determined that it would help them succeed at school or work. However, Braille education is on the decline, especially now with so many other adaptive technology for reading and writing that are available nowadays.