Showing posts with label adjustments. Show all posts
Showing posts with label adjustments. Show all posts

Friday, 23 December 2022

Hatty Christmas!

🎵With your hats and my hats and my hats and your hats the more we get together the hattier we'll be🎵

Attention, all neurotypes: This is your friendly neighbourhood reminder that it's OK and a good idea to do Christmas however it works best for you. Introvert, extrovert, lonely, content, anxious, peaceful, grieving, joyful, scared, however you're feeling.

This song has been going round and round and round and round in my head since it invented itself when Lil' Peggy brought me our hats for a walk yesterday. In case you didn't sing it in your head or don't know the original song, it is a truer and more inclusive version of the song "For my friends are your friends and your friends are my friends. The more we get together the happier we'll be"

Of course the original song is a lovely sentiment and probably designed to promote inclusion. And it's a pleasing rolling tune that's easy to pick up, fun to sing and sticks on your head. I like it. But it's always irked me that it's just not true! For me at least!

Other people's friends aren't always my friends. Although we may share friends or their friends may become my friends, occasionally we really don't get on. Certainly I may not have met them yet, in which case they absolutely aren't my friends even if they may be one day.

And I have a definite social battery, so "the more we get together the happier we'll be" just ain't it! I do actually like people and need to enjoy spending time with them, a discovery I was pleased to make a few years ago, but the quantity and frequency of my socialising needs to be a lot less than for many others. I need down time to recharge alone and space for regulating activities. More does not infinitely equal happier!

But with my hats and your hats, we will definitely be more hatty the more we're together (if hattiness = nHATS x tHATS, where n=number and t=time in presence of).

Some great adaptations I've made to Christmas the past couple of years have been to allow myself time out where needed (this builds itself in naturally with a small breastfed child, but I had planned for it before the child came along too, although I didn't get a chance to implement because of covid), and to only spend a few days at a time with people if going away. We do go and stay with people a few times a year either as a family or me and the smol, but I now know my limits and tend to keep it to about three days at a time because I know that this is about my capacity before the balance between benefit and difficulty starts to tip.

Knowing what is going to happen and what to expect helps me a lot and my Peggies-in-law are amazing at this - before we go to stay with them they send a suggested itinerary and meal plan. This is fantastic because it means we can make any necessary changes or flag up things they need to be aware of (Little Peggy can't have cow's milk so when buying things like pies from farm shops they need checking) and I know what is happening and what is available. I can also look at menus in advance so I'm not under decision pressure at the time, and I can decide how I spend my time depending on what will be happening (eg. if I know we'll be out all afternoon and evening I might spend more time in the morning away from the family to minimise overload). Even little things like deciding what to wear (inside/outside/formality of occasion) are helped by understanding what will happen when. It just helps my brain relax because I am often thinking about what is coming up in my day or week so I can be prepared for it, and if I don't know then that thought keeps buzzing round taking up brainspace because it's unresolved.

So. If you know something that will help you at Christmas (or any other time!), to quote (slightly out of context) a very wise Peggy who has helped me a lot "it's OK to say it."

Note: saying it explicitly may be more uncomfortable but may in the long run be more helpful because then others are aware and can help to make sure the adjustments that help you cope are kept to, or can show more understanding of any struggles or make different accommodations if they are not kept to.

And last but definitely not least, if you have been brave enough to say it and others have disregarded or forgotten about what you have said, that DOES NOT automatically mean you were wrong for saying it. It does not mean you shouldn't have said it, or that you are a bad person or that you don't deserve whatever adjustment you were hoping to make (or are still going to make, but are now probably feeling guilty about making). 

Sometimes things need saying a few times. Sometimes they need explaining a different way. Sometimes there's a compromise that will still meet your needs. Sometimes people will not understand. Sometimes understanding grows over time.

Stating that doing something differently would help you is not a character flaw or a crime! It might even help others too - inclusivity often benefits everyone not just the person it's "designed for." Or it might make others glad that they know they are maximising your enjoyment and wellbeing by accommodating your needs or preferences.

I hope you have whatever kind of Christmas time you need this year.

Tuesday, 9 March 2021

Inclusion Makes ALL Lives Better.

Inclusion and accessibility are variably seen as either unnecessary expenditure, feel-good or philanthropic add-ons or important ways of levelling the playing field so that everybody can have meaningful participation in the things they want to do and the places they want to go. Depending on how much value you place on a life that is different from yours...

What is sadly overlooked in all of these views is the benefit that these adjustments also bring to the lives of people who don't have barriers in the way of accessing the opportunities they enjoy and/or need. I have seen occasional articles pointing this out: for a starting point you could try Joanna Grace's TEDx talk here (less than 15 minutes) or follow her on social media as she frequently explains much better than I can the myriad reasons why and how inclusion benefits everyone and not just those it is "aimed at." Or have a chat with me and I'll ramble at you about it!

I just felt like highlighting this again today after a soul-warming conversation I had earlier. I consider myself incredibly fortunate to have both a mental health team and midwife who are thoughtful and responsive and keen to work in an inclusive way, making adjustments to support me so that I receive care that is as beneficial to me as possible. I truly believe that this makes a daily difference to my wellbeing and ability to cope with and enjoy life. A current part of this work is creating a plan to reduce my anxiety and distress around accessing the hospital where I will likely be giving birth and may need to visit for antenatal care. I was discussing with a member of my mental health team some proposed steps in this antenatal plan including pre-recorded and live videos as preparation for brief non-appointment visits. 

And then came the conversation: "Well, wouldn't that [pre-recorded tour] be useful to a lot of other people as well?" "Couldn't they make it available to everybody?" and even better, "Is that something that would be useful for our service to do as well?" 

Yes, yes, and yes! Especially during these restricted times where visiting places is not routinely allowed and people are encouraged to stay at home unless there is very good reason not to, I can't think of many people who wouldn't find the availability of a photos or a video tour or street-view style navigation useful and anxiety-reducing. Birth can be a stressful and anxious time for many people with or without additional difficulties. And likewise pretty much everybody attending an unfamiliar mental health service is going to experience high levels of anxiety which may be slightly reduced by knowing what to expect visually when they arrive. Many venues began to create videos when they reopened after the first lockdown, to explain their covid-secure measures, and I have heard countless reports from friends who have found this really helpful. How fantastic to have professionals around who think one step beyond what you have said and constantly reflect on potential wider implications - the people who truly listen and seek proper understanding are the ones who make strides in care not just and not least for specific patients but also for wider best practice.

Adjustments and accommodations made to make care and environments more accessible and inclusive to me as an autistic person don't just benefit me. Because my needs are perhaps more overt in some areas than other people's and I am fairly aware of them, I can actually help make things better for the general population. With the help of the people around me who have great ideas and are willing to put in the extra work to support me, we can speed up improvements of systems that will help everyone and might otherwise have taken much longer to come to light.