So this is what is going on in my life right now.
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Hello everyone, things in my life are kind of crazy at the moment. And by crazy I guess I mean insane.
To start with I have some care worker issues with the agency that provides my care. There are issues with cover and I have no idea who is suppose to be organizing it.
Second, I am struggling to pay for dance. Yesterday we set up a fundraiser with Give a little, here is the link.
https://givealittle.co.nz/cause/help-me-continue-going-to-dance-and-live-a-better
I am a bit anxious because this next coming term is the big show, a show that only happens every 2 years. Any extra money raised till go towards future dance. I have been paying it myself, but its just becoming to hard.
And thirdly, I am having issues with my support to attend medical appointments. Its complicated, its a mess… but every service is describing themselves as a “short term service” and they keep saying people should be working towards independence. Its kind of silly to me because the help I receive allows me to be independent. There is no balance I think? I have no idea what my future is going to be like. But without that help I cannot be in the community like I like to be and live in my own residence.
And fourth. I have written something that has me debating a lot with myself. I wrote a story about the incident of my mother nearly killing me. Its just a small snippet of my confusing and complicated life. But now I have a question to myself of if I should share it or not. And that debate has meant I have not been up to posting anything else lately.
Thank you all for reading and I love you all a lot. Please enjoy this picture of me as a Princess Unicorn!
About The Author
Matty is a 36 year old girl who is an Autistic Poet, Writer and Artist and lives alone in Christchurch New Zealand with a kitty! Matty has given many talks on autism and about being unique in a world that's often not accepting, Matty has also engaged with artist and worked on Art projects Matty usually works on an Art project at the same time as a writing one! This means posts can be a bit delayed!
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4 Responses and Counting...
I’m sorry things have been stressful lately. It’s frustrating when services are so short-term and they magically expect people to remain independent. That doesn’t fit everyone. Hopefully they will make an exception or you find a longer-term service. Keep dancing, Princess Unicorn!
Matty,
All of us who receive caregiver services periodically experience the craziness of scheduling and not being sure who is coming or when or for how long, but know this not a permanent state and things will improve again.
Sadly, service providers everywhere are attempting to reduce services (apparently not just where you live). This just means we need to organize and advocate more to keep what we have now or maybe change the laws to expand services, not reduce them.
We need to explain to the legislatures and/or department heads who create and fund the services and programs that help people like you and I live independently at far less cost by providing the services we need to remain in the community where we want to be.
I can say with all certainty that if you lived in Pennsylvania, you would receive more hours of care per day and at least some paid transportation to activities.
With regard to your story about what you went through with your Mom, the mere fact that you were able to write about it is an amazing step forward toward your personal healing. You need not share it with anyone if you don’t want to do so. Just know that we all love you and support you in your efforts to live a happier and healthier life.
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Kathy
Things will get better Matty. I’m struggling myself at the moment, but as my Mum said to me recently, “this too shall pass”. I hope you have had that lovely photo of you printed and framed!
Hi Matty
I’m sorry I’ve not been in contact as often as I would like, but have had my own issues struggling with pain and my health.
I’m so saddened to hear about your struggles with your care worker and the related agency, I hope this gets sorted soon.
I know you love to dance and I hope that by setting up the support page that people will give to it, even a little bit counts. I don’t have much money but I will check it out and donate what I can.
If you aren’t comfortable posting your story regarding your mother then please don’t – you don’t need to be dealing with any negative repercussions. Just hold onto it for the time being, when it feels right for you to share it, you will.
I miss our chats on Skype and one day I hope we can get back to them – but at present I don’t have Skype on my computer nor headphones.
Love you heaps young lady, hang in there and be strong xxx