A Day In My Life (University With Autism Spectrum Disorder)

As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.


THE NIGHT BEFORE

Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me –  so that I can get as much out of that session as possible.

So it was one of those days where I barely had time to think.

On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.

I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.

So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.

I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.


THE DAY ITSELF

I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).

My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.

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I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.

My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).

I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.

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That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.

I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.

I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.

During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.

I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.

It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we  were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.


THE NEXT MORNING

I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.

Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.


So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.

Mourning A Public Figure

Last week was the two year anniversary of Claire Wineland’s death. She was a twenty one year old activist, raising awareness around Cystic Fibrosis and founding Claire’s Place Foundation to support children with Cystic Fibrosis and their families. She spoke at many conferences (including TEDx and the International Respiratory Convention and Exhibition) and posted multiple videos on YouTube, talking about her illness but also her life and her thoughts on various subjects.

In 2018, she went into hospital for a double lung transplant. I remember watching the Instagram Live where she announced that she’d received the call as she dashed around her home, gathering everything she needed. It was so exciting and I was so happy for her. She had the surgery and everything seemed to be going well. But then she had a stroke and a week later, according to her advanced directive, was taken off life support. She died on the 2nd September 2018 at the age of twenty one. I wrote several posts about her, including one in remembrance.

I was deeply upset at the news of Claire’s death. When I discovered her YouTube videos in mid-2017, I instantly fell in love with her personality, her eloquence, her thoughtfulness. I really felt a lot of the ideas she expressed and despite the fact that we’d had very different life experiences, it felt like we had something in common, something in the way we thought and felt. And despite only having a few interactions on Twitter, I felt a connection to her – obviously not the same connection as the ones I have with my friends, for example, but a connection nonetheless. She had a big impact on my life and when she died, I felt like I could feel the edges of the space in which she’d previously existed, like there was a hole where she’d been. It was a very distressing feeling.

Two years later and I still feel her loss. She was so full of life. You know how some people just seem bigger than others, have minds somehow more infinite, have something extra special about them? That was always the way Claire felt to me. I’d felt so sure that I’d watch her go on to do even more great things. Her death felt so unfair and it still does. It still hurts. The documentary about her, CLAIRE, came out on the first anniversary of her death and as much as I want to watch it, I haven’t been able to. It’s just felt too hard. One day, I will but I just haven’t felt ready.

Over the last few years, I’ve had several similar experiences. The first, I believe, was Cory Monteith in 2013. I was still watching Glee at the time and he was so young; his death was so sudden. Then there was David Bowie, who has always been incredibly important to my brother, and Alan Rickman, who had been a consistent presence in my life through his role in the Harry Potter films. If you’ve read previous posts of mine, you’ll know how important Harry Potter has been throughout my life. And more recently, there have been the deaths of Cady Groves, a singer I’ve been a fan of for a decade, and Naya Rivera, another Glee alumni.

I struggled with each of these deaths, all of these people having had an impact on my life. But I think the only death that has had as dramatic an effect on me as Claire Wineland’s was that of Christina Grimmie. I’d been following Christina on YouTube for years; I just fell in love with her voice and her piano playing, how unapologetically herself she was. She was about my age and pursuing music so it’s not surprising that I related to her. But with managing both my mental health and university, I’d fallen behind on a lot of people in my social media bubble, Christina included. Then I woke up one day and she was gone; I still remember the moment I found out. I was stuck in a state of paralysed shock for days and I had nightmares that went on for months. Much like with Claire, I felt like there was a hole in the fabric of the universe where Christina had been, should still be. Even now, I still think of her often.

Grieving for a celebrity or public figure can feel like a bit of a minefield, I think. There’s the internal conflict: you didn’t know them personally but the feelings are still very powerful. Plus there are always people ready to tell you that you don’t have the right to mourn someone you never actually knew and because you didn’t know them, whatever you’re feeling can’t be grief. But personally, I don’t agree.

Grief is an incredibly complex emotion. I don’t think anyone truly understands it. Personally, I wouldn’t classify it as a single emotion; I see it more as an umbrella term, a checklist of things you may experience although you won’t necessarily experience all of them. I don’t think there’s a big enough word to describe what we go through when we’re grieving. It’s a natural disaster, an emotional natural disaster. It’s so complicated and having lived through both the losses of people in my life and public figures I cared (and still care) about, it’s my experience that the two are definitely different (having said that, we could have a whole other conversation about how the grief for each person is completely different) but that they’re both real and they’re both profound.

I definitely want to write more posts about grief but I want to keep this one to the grieving of a public figure. As I said, it is, of course, different to losing a person who is physically in your life but if you feel a connection to someone, it is inevitable that their death will be painful. As far as I’m concerned, that connection is the key. Whether they’re an actor, singer, writer, activist… they’re all reaching out, with their stories, their songs, their words. They’re reaching out with the intention of creating a connection with another person, a person who finds meaning in what they have to say. And I think it’s fair to say that – often – the deepest connections are the ones that are built from the most personal places (for example, their presence or their work has gotten you through a difficult time, you relate strongly to something they’ve said or created, etc). So of course we would feel the loss that connection. Of course it would be painful and distressing and maybe even traumatic.

And then there’s the moving forward to consider. There will always be things that remind you of them, such as events they would go to or public appearances they’d make. And in the case of creatives, yes, we will always have their past work but that may be difficult to consume again: the emotions and memories associated with them may be overwhelming; it may be painful because it reminds you that they’re no longer here; if they helped you through difficult times, it may be difficult knowing that they won’t be there to help you through any future hard times; knowing that they’ll never create or release anything new may be distressing, especially when the release of new work was a big occasion in your life.

I think that the only way to truly move through an event like this is to talk about it or, at the very least, express your emotions:

  • Hopefully your loved ones will understand what you’re going through, especially if you’ve mentioned this person before or they’ve seen or heard you consuming their content, whether that’s listening to their music, watching their videos, or reading their works. If you can talk to someone close to you and at least get your emotions out of your body; sometimes I think that keeping the emotions stored inside your body only makes them harder to shift further down the road. (If someone you don’t feel comfortable telling the whole truth asks you why you’re upset, you can always tell them that a friend or someone you know has died – that will explain your mood and they’re unlikely to ask too many questions.)
  • You can express your feelings on social media, if you feel comfortable sharing with an unknown audience. Sometimes that can be too scary but sometimes it can be cathartic to put your thoughts out into the world, not knowing where they’ll go or who they’ll reach.
  • You can write a letter to the person who has died. I’ve always found writing to be a good way of getting my emotions out. If you want to, you could post it online if you keep a blog or something similar, or you could simply keep it for yourself as a reminder of what they meant to you and everything you felt at that particular moment in time. When it comes to such an emotionally charged moment, in the future you may want to remember everything about the experience. You may not, of course, but you can’t know that in the present moment.
  • I’ve always found journaling to be very helpful in coping with and managing the ebb and flow of my emotions. Since it’s just for me, I can feel and say whatever I like without fear of judgement, which I think allows me to move through each emotion with less friction. Putting words to what I’m feeling somehow makes it all easier to process and work through. It doesn’t necessarily mean those feelings go away, but the strength of them does become easier to cope with. And then at some point, they simply become a part of you, a piece in your mosaic.

I’m sure there’s more to say. When it comes to grief, there always is. But I think I’ll leave it there. I hope you leave this post knowing that whoever or whatever you grieve for, your grief is valid and I hope that, if you’re going through any kind of grief, that you’ve found some way to manage it and/or that you have people to support you. I’m not sure if it ever goes away but it does change. Life goes on, even if it feels unbearably unfair. So carry with you the gifts they gave you and try to do some of the good that they would be doing were they still here.

Two Years In

As of today, we have been living in the ‘new house’ for two years. So it’s not exactly new. But after living somewhere for fifteen years, two years feels like nothing. In fifteen years, I became a person, my own person. Then I blinked and two years went by. It’s not even comparable.

There were so, so many good memories in the ‘old’ house: the late night games me and my brother would play where we made nests out of our bedding, bringing Lucky home at eight weeks old, listening to the same Annie Lennox CD every year as we decorated the Christmas tree, evenings watching TV as a family, my Dad telling us made up Harry Potter stories until we fell asleep, waking up to Snubby curled up on the pillow next to me even if it meant a mouthful of fur, big dinners with family and friends, bringing Lucy home, things as simple as coming home to the living room windows open and Wimbledon on the television. There are more good memories than I can count.

There were also bad memories, like my Mum crying after her Dad died, coming home after being bullied at school, watching my brother come home after being bullied at school, the early meltdowns, Lucky getting sick, having my heart broken for the first time, being told my cat was terminally ill, taking her to the vet that last time and coming home without her… finding out that my Dad had died. They aren’t memories I want to spend time with but they are moments that made me who I am and so I need them safe. And those walls kept them safe for years. But memories aren’t like possessions. You can’t pack them into a box when you leave a place. So what if you reach your new house and they haven’t travelled with you? At least not with the same clarity, in the same condition, that they were in where you previously lived? What if small details have been left behind?

“So what is it that makes us mourn the loss of a structure? It’s not the great architecture, or the way the light pours in through the windows in the morning. It’s the loss of the vessel that held our memories. It’s almost as if leaving a home rich in such a lived-in history causes our memories to spill out everywhere, and we feel like we’ve spun out of orbit, scrambling to collect them… But we have to remember that we have lost the vessel, not the memories. We just have to build a new place to hold them.” – Kelli Kehler on Design Sponge (x)

Over the last few weeks, I’ve been walking around, looking at the house and trying to figure out how I feel about it, how I feel about the fact that it’s been two years since we left the place that I’d always considered home. I’d never thought far enough ahead to consider anywhere else home. This is where I live now – I know that – but when I think of home, it’s the old house. But that’s not home anymore either because it’s got other people in it who will have changed things – who will be filling it with their own memories – so I’m not sure where ‘home’ is. In a way, I feel kind of homeless. It doesn’t help that even though we’ve been here two years, we haven’t had much time to do anything to make it ours. Not really.

It’s a grieving process. And it’s one that hasn’t been properly dealt with because there’s been so much going on: medication changes, going back to university, challenges with my mental health. To say it’s been hard is a pretty huge understatement. It’s been one of the hardest things to happen in my life.

But I guess there’s a reason we call it a grieving process. Because it is a process. Our feelings change day to day. We move forward, we move back. Our emotions heighten, they settle, and then they heighten again. It’s ever changing. So rather than sum up the last two years, I’m trying just to think about now and when I think about now, this is what comes to mind: most days, it’s okay or it’s at least not something I think about. But there are still days where I hate it, where it feels like I’m walking around wearing someone else’s skin.

I’ve read various articles about moving out of your childhood home and adjusting to a new house and something that came up a lot was finding things you like about your new surroundings and where you find things you don’t like, try to figure out why and what you can do about it.

So here are some examples…

What do I love about it?

  • The living room feels like a safe bubble, where I can shut out the world when I need to. I especially like it since we hung fairy lights around the room. Plus it’s where the cats spend most of their time.
  • I like the white curtains in my room and the living room. I’d only ever had dark coloured curtains so I thought I’d hate them when we moved in but I actually really like them. As a person who’s sensitive to light, it’s really nice to be able to block out the bright light but still have natural light in the room.
  • I love the fireplace. It’s beautiful and fires in the winter is something that me and my Mum look forward to all year.
  • I love the big, glass double doors that lead out into the garden, which has a deck, a eucalyptus tree, and yellow roses. It’s the perfect garden.

What don’t I love and how can I change those things?

  • I don’t love my room. It’s not MY room; it’s just a room I sleep in. I don’t hate it – I like the colour and the curtains and the bed – but I don’t love it. I want to go through my clothes and get rid of things that don’t feel like me, put some pictures up, and generally just make the space ‘feel’ right. But, to a degree, I think that’s something I’ll only know when I feel it.
  • I want a space to make music – even if it’s tiny – where I can put my laptop, microphone, MIDI keyboard, and so on. I just want my own little space, not something I have to reassemble every time I want to record something.
  • Both me and Mum really dislike the bathroom. We don’t dwell on it but not a week goes by that one of us doesn’t curse one element of it or another. The floorboards are super squeaky, the flooring is ugly, it’s cramped, and it’s just impractically planned out. It’s the only room we’ve always wanted to completely re-do. We’d started the planning process but obviously that’s on hold while we’re in lockdown.
  • The house is still a bit bare, a bit impersonal. It still doesn’t quite feel like ours. I couldn’t figure out why until recently, when I looked around and realised that we still haven’t put up more than a couple of pictures. So me and Mum have pledged to put more personal touches around the house, as well as put up more pictures and photos. Given the lockdown, this is one of the few ‘decorating’ things we can do without leaving the house.

Me and Mum have been talking about this, about this feeling, for quite a while. But with my Masters, I haven’t had the time or the energy to do much about it. And Mum’s been working and helping me manage everything. But my second semester is ending and we’re stuck in lockdown so we’re planning to carve out some time to get more comfortable here – or get me more comfortable, at least, as the one more sensitive to this issue. We won’t be going out to get paint or new tiles or anything like that given the current situation but since we’re both stuck in the house with some extra free time, we thought we’d start with the things we can do while in lockdown, like putting up pictures. We also have a scale drawing of my room and cut outs of my furniture and have been moving them around to try and create a set up that is both practical and feels right to me, enough at least to try out.

So we’ll see how it goes. Nothing’s going to change overnight, but then what does? One step at a time, hopefully this house will feel more like home.

Tips for moving out of your childhood home. (x)