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Thursday, 7 January 2016

Operation Independence Update

"Independence is happiness."
Susan B. Anthony

It's been quite a while since I've talked about my quest to live independently from my parents and I finally have an update! I didn't want to post about this before anything was confirmed as I didn't want to put the scud on it. (Do you guys know that saying?) I'm one of those people who doesn't really believe something is going to happen or get excited about it until I'm living it. It can be frustrating for others but I guess it's a defence mechanism. I hate disappointment. And while living independently is still quite a while off yet and by no means plain sailing from here on out I feel like I can share this little development.

I'll give a little bit of a background to this whole journey for those of you that may not know about it. Back in 2014 I met a girl on Instagram, called Amber, who also has Muscular Dystrophy. I was surprised to find out Amber lived in her own place and had carers come in at times during the day to take care of her. She was the first person I knew with Muscular Dystrophy like my own that didn't still live with her parents. At the time we were waiting to get work done to our house that would make my bedroom bigger and put a counter top in the kitchen that I could reach to give me a little more independence. It was a compromise for what we actually asked for which was my own extension out the back, like a granny flat. At 24 I felt like living with my parents was impacting on my social life, as well as my love life. As a teenager it wasn't a big deal. Everyone had to deal with bringing their friends or boyfriends to their parent's house. And while my folks have always been great and understanding, there's a point where you need a place with your own rules and your own space. Your own privacy. Aside from the usual reasons people want to move out I also had another layer to it. The fact my parents had looked after me for the last 24 years and would continue to until they couldn't anymore. Feeling guilty and like a burden is something a lot of people with disabilities feel throughout their lifetime. There was also the reality that my parents wouldn't be capable or around forever and some day I would possibly be forced into an alien situation out of my control. Something that could happen sooner if my parents carried on looking after me until it was a struggle and probably even after if I let them. I wanted to take the bull by the horns. Sort it out while I still had them as a support network. And suddenly, after meeting Amber, I realised that maybe I had more options than I had realised.

It was scary telling my parents that I wanted to explore my options and look into living independently. Especially as we were so close to getting work done to our house so we had to have that called off. Time and effort had gone into plans for that but the closer it came to fruition the more anxious that I got because I felt like I was committing to living with my parents. If I decided after that that I wanted to move, the housing people would be less inclined to help because for all intense and purposes where I was living was suitable for me. Even if I was living with my parents. I wrote more about all this at the time and my parents reactions to it all in he posts Guilt Of Independence and Family Matters. I go into a little more detail about how it all came about.

For a long time everything kind of came to a stand still. I applied for a care package but it was basically impossible to get funding because I was still living with my parents. So I ended up agreeing to put that on hold until things with my house were more settled. That was also to keep the peace as my parents weren't thrilled at the idea of having strangers in their home.

At the time I applied for rehousing my mum had mentioned to the housing officer that if it would help me find a place suitable sooner that my parents would be willing to move out of the bungalow we live in now and get another place and let me stay as they would be easier to rehouse. The woman scoffed and told us that wasn't how it worked and that I'd have to go on a waiting list like everyone else. My parents were also told it was likely that they would be moved as well as they wouldn't need a wheelchair accessible bungalow anymore. So we dropped that idea. For a while...

I can't remember exactly when but after everything had been at a stand still for quite a while my mum thought about that idea again. I reminded her of what Sheila had said but my mum isn't one to let one person stop her if it's something she's passionate about. My mum figured just because it hadn't been done before didn't men it couldn't be done. It was killing her that this place we'd called home for almost 10 years would just be taken from us. Even if it isn't really ours it's still home. So my mum hatched a plan and called the housing people that own the bungalow and ran the idea by them. She got on to a woman at Choice Housing (the house used to belong to Ulidia but it merged with others into Choice) called Catriona and she was more than supportive of the idea. To her it made perfect sense, even if it hadn't been done before. She wrote up about the idea and went to other colleagues and asked what they thought, if it made sense and if they thought it was something that was possible to pursue. They all said it made complete sense.

So the ball was rolling. The only real hurdle we've had has been my dad, again. Understandably he didn't like the idea of me essentially chucking him out of what he considered his house. But the reality is, like my mum said, it was never their house. They would have been rehomed anyway. But my dad seemed and continues to be in denial of that. He stopped talking to us for a couple of days again.

A lot of emails were sent back and forth and reports were written up. My mum took the reigns because the bungalow isn't mine. I wrote an email with her about all the reasons why it would benefit me to stay in the bungalow I currently live in. Things like people in the area being familiar with me, having two wheelchair accessible shops within walking distance, my GP and dentist within walking distance. A train stop within walking distance for Hospital appointments. All the practical reasons. At the end of the day every person signed off on it and thought it made complete sense. Catriona had to really do her work when writing the case up because as I've said, it hadn't been done before and there were some legal things that had to be taken care of. Other people also had to write letters for my case.

Things stopped again a couple of months before Christmas as I think they were waiting on the last person signing off but on Monday we got a call from Catriona to say everyone had signed off, it was going ahead and she would be out on Wednesday for my parents to sign the tenancy over to me. I couldn't believe it. I still can't believe it. Yesterday she came out and we signed the tenancy over to me. As of Monday our bungalow will be in my name. I have my place. 

This is such a huge development on the road to independence. One I thought would never happen but I really should have had more faith in my mum. I'm also so grateful to Catriona who was prepared to fight for my case too. I still have a long way to go. We are still getting some work done to the house, the kitchen will have a lower level shelf and my bathroom will be make accessible too. My parents also have to put in for a house and wait to be rehoused. We've been told because of the special circumstances they should hopefully be a priority. Because while they live here I can't move into my room and have the work done to the bathroom off that room that will be mine. I also can't get housing benefit or my care package in place. So hopefully it won't be long until I have another update.

It's all pretty daunting but also incredibly exciting. There has been times throughout this journey I've wanted to stop. Felt guilty about putting my family through it, got scared that I won't be able to handle the changes. Take the easy way out. However, change is inevitable. I need to remember that. I'm just making sure I have a say in how and when it happens rather than let my hand be forced.


  1. Ahhh how exciting?! :) I'm so pleased for you hunni! xx

    1. I know. Scary but exciting! Haha. Thank you. xo

    2. Haha once it's all sorted the excitement will outweigh the scariness i'm sure! :) xx

  2. That sounds so exciting! I'm so happy for you, especially after all that complicated processes you had to go through!
    And I'm completely the same, I also don't believe something is going to happen until it actually is. This way I'm less disappointed if it doesn't happen and if it does, I'm even happier! :)
    Shifting Tales

    1. Thank you! I'm sure there are more complications to go but I'm so happy that that's one part done!

      Yeah, I don't consider myself pessimistic. It's not like I think everything will always go wrong. I just always remember there's a chance it will and I feel like I'm a lot happier this way. I always feel super bad for people when they're really excited and then they're let down. :( xo


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