Saturday, January 17, 2015

Snapshots into Sophie's World

Last year I met a young woman through Facebook named Sophie. She lives in the UK and we live in the US. Although we are thousands of miles apart, Sophie has taught me far more than any therapist ever has about Kreed. Sophie uses a communication device as well and can type out her thoughts. She has given me insights into Kreed that has allowed me to teach him so much better and understand him so much better. Sophie's words can change the thinking of everyone who thinks that those who don't use their natural voice don't have something to say. She spent years unable to speak or be heard and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. It's people like Sophie, and hopefully one day Kreed, that will finally make people realize that nonverbal doesn't mean anything other than they have a different way to communicate. 
I asked Sophie if she would write a bit about her experiences. So without further adieu, here are a few Snapshots into Sophie's World. 
Sensory overload 
Sensory overload is the worst feeling in the world!!! I get it when I see too many people walking past me or if I hear too many noises at one time. For example in a room of people talking my brain tunes into everyone else’s conversation and I struggle to filter the voices out and listen to the carer I am with it is so frustrating and I have to be re directed to listening to my carer by them saying my name or tapping me. When I get sensory overload it is like I have 100 buzzy bees in my head and my head hurts a lot and feels like it will go bang like a balloon it is the most uncomfortable thing ever!!! I have to try and bang my head on things to try and relieve the pressure in my head to try and stop the feeling. While I am experiencing sensory overload I find it very hard to talk or make any sentences as my speech just won’t come out as I want it too and I can’t make the words make sense. It really makes me feel frustrated and so upset and I get very cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it but if you imagine you have 50 people trying to talk to you at one time and you need to answer every single one of them then maybe just maybe that is a little insight into what it feels like. 
I have a lot of obsessions one of them being time and numbers!! I like the numbers 0, 5 and 8 so when I used to wear a digital watch I wouldn't do anything unless it was on one of those numbers which caused many problems as u can imagine! So I now wear a watch which I can’t tell the time on which solves my need for wearing one on my wrist but also allows me not to be stuck for getting out of bed and having a drink all at certain times etc….There are many ongoing battles of obsessions which come into life daily such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes’, standing in the same place at the gym the list is endless!! But my carer is really really good at working with me and we are overcoming a lot of hurdles to make not everyone’s life easier but most importantly mine! It’s a daily struggle and cracking a new obsession I find so so hard it makes me so twisted and frustrated inside and I throw my head back and close my eyes and usually self injure. I can imagine it’s frustrating for my carers and people to witness but it’s just the way I have to work the frustration out of my body before I then try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated I bet but believe me over all it is so much easier than just giving into all my obsessions some people learn the hard way! 
Communication app 
I first got a communication app in 2011 for my 21st birthday (Best present ever!!) The frustration was so high and daily meltdowns because I couldn't verbally tell my carers what was wrong or even join in a morning circle and say hello to my friends at my day service the list was endless! I could sign but not everyone could so my list was limited to who I could talk to…. I tried editing it as much as I could and tried using it but my current carer didn't share the enthusiasm then instead she thought it was a cool gadget and played around…. Not helpful when it was my token into being able to access this wild and wacky world! I on and off used it for the next 2 years until Christmas 2013 when I had enough of people guessing what I wanted and getting it wrong and I decided to throw myself into using my app cause I really wanted to be heard and it felt good to have a voice (I had waited long enough!) Since then I’ve never looked back my new carers threw themselves into the communication device as much as me if not more! My current carer always insists I use it and it does help so much I’m still learning to use it and try and not self injure its hard but I’m really trying! I have now just bought the Dynavox Compass app and I think that will be life changing for me because of the amount I will be able to say on it I have loved the free trial and have gained so much conversation on it and feel like I can have a real conversation using it and boy does that feel good! Don’t think I’ll ever go back to the days of no device now it’s too quiet and my carer always laughs when I say I’m quiet! 
I hope you have enjoyed hearing Sophie's thoughts and will really think about what it's like for your kiddos and what we can do to better support them! It's voices like Sophie's that will ultimately raise awareness and give others understanding.