Saturday, January 17, 2015
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 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!
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.
Sunday, January 4, 2015
People said Kreed would never write, communicate, type, learn academics or really do anything he is currently doing. When Kreed was younger he was lost in chaos and destruction because everyone just saw a child that was the master of destruction. They saw a child hit, spit, kick, drop to the ground, bolt in a split second, clear entire counter tops, find secret food to eat, find secret nail polish to spread everywhere, refuse to sit in a child seat in the car and throw all his shoes or anything he could find at your head while driving, step in and smear poop, and basically reduce a room to shreds in five seconds flat. In all is those actions, no one was seeing what was possible. Or why he acted that way.
It took at least five people to hold him down to do a simple x ray or any other medical procedure. He would bolt out of the room and pull everything out in a split second. Yet, seizure studies were done, blood drawn and IVIG began. None of it was easy. But all of it was worth it.
Which brings me to now when I think of all Kreed has accomplished and what is now possible. Because we never gave up. We refused to see just a chaotic "non compliant" child. He was a child without a voice and those around him refused to believe he could. We felt differently.
Three years later Kreed has a voice and he uses it loud and proud. And it has made everything possible. He now understands why we do things like x rays, MRI's or why we go to the doctor. He doesn't try to bolt or leave and for the most part can be talked through everything. (Except a blood draw- that still takes three of us ha, but we still hope!). He has done more seizure studies and even sleep studies! Check out the wires he not only let them put on, but he SLEPT like that.
Then they said he has to wear a bipap machine at night. Something even adults struggle with. Not only that, but an incredibly high pressure. And look at him now! He wears it at least six hours a night! It's possible! This child who won't even let you wipe his face with a napkin, wears a bipap mask. Because he has a voice and was allowed an opinion on which mask, followed social stories and practice rounds. None of it is easy. Every night I wake up at 2am to put his bipap machine on and again at 5am to make sure he kept it on. I run on very little sleep some nights! But it's worth it! He wears it and it helps him. This is what is possible. Even when people said it was impossible.
An MRI goes like a dream, he doesn't fight the mask they put over him and everything goes smooth!
Kreed was also a kid that bolted non stop- from the house, in the store, in the parking lot. Through a combination of his service dog and his device, he is my favorite person to shop with. He's engaged and he will go anywhere! While he still gets super hoppy haha, I'm happy that's the least of my worries. If he wants to hop through a store, so be it. But now he communicates when we are out- so instead of running to get what's in his head- he TELLS me and we have a conversation about it!
He even sits patiently while we wait for food, and will even go and get the food himself. He is also learning to pay and order himself! No one thought this was possible.
We document so much of Kreed because unfortunately autism families are often told what their child can't do, won't do or will never do. Or that their child is "non-compliant" when really they just haven't figured out how to get your child to cooperate. Kreed just wanted a voice. Now he LOVES "working", shopping, driving- you name it- all of the destruction from the past is exactly there- in the past
Because we dared to defy expectations and instead give him none, just wings to fly. While our life revolves around Kreed, I don't regret it for one second. He's made me a far better person than I would have ever been. He didn't ask to be brought into this world and to be faced with such difficulties. So the least I can do is make it easier. And happier. Happiness must come first. Kreed will forever live a life I will never experience- he lived most his life without ever having a choice and even though he has a voice now, it's still hard for him to effectively communicate. He needs help to talk, dress, shower, go to the bathroom, get food or go anywhere. He is reliant on us. I can't imagine the helplessness he just sometimes feel to be trapped in a body racked with pain and sensations he can't describe to me or have a remedy for. He can only show us with his behavior or now some words on his device. But through it all, Kreed continues to amaze us and show us what's possible and how the human spirit can endure and overcome.
Kreed will be 18 in this coming year and while that signifies independence for most of the population, I see it as an opportunity for Kreed to show the world what is possible past early intervention and that learning never ends. He will learn to write, type and communicate far beyond what anyone ever thought.
From chaos and destruction to love, happiness and learning. Kreed continues to show me every day what is possible. We will never stop believing in him. We strive for progress not perfection and we have our whole life to teach and to learn.
Kreed is my forever wingman and my right hand man. His unconditional love is incredible and his power to forgive when things are tough. My job is to make his life happy and that includes teaching him skills that will give him more independence. Kreed is so happy and proud when he can do things himself. We have our whole life to get there and I think he's done an amazing job so far. Most of all, Kreed has taught me and the world to think beyond what's possible and truly have no limits.