How i use support at home. (why a babysitter)

Babysitters are Awesome.

Added on Saturday 21 November 15

I have changed my definition of independent. I use to think independence meant i had to do all of the daily living tasks no matter how difficult i found them. I use to think independence meant if i was anxious, i had to just push through. If i was tired, i had to push myself harder.

My old view of independence led to a massive failure including rolling panic attacks and burnout. Not nice.

My new definition of independence is:

  1. Financially independent. I pay my way.
  2. None of my friends need to provide any of my day to day support needs
  3. It is sustainable long term

In a nutshell, i use the money i earn from my job, to pay for the support i need in order to live in my own home, so that i don’t need to rely on my friends to an unsustainable level.

Why a babysitter?

We ended up with a babysitter because its the closest equivalent to what my friends do. They “look after me” more than anything. They say they rather enjoy it!

I don’t mind. Being “looked after” is the most efficient way for me to conserve energy. I am calmer happier and all around much more bounce when i feel safe and “looked after.”.

I do give up some control, but i gain autonomy. At a high level, i set the goals and targets the babysitter works towards. The babysitter works out strategies and plans her visits to reach the goals.

For example, an evening meal is something we do every night, but i might also discuss a bath. Other times the babysitter may ask how i have been during the day, and form there suggest ideas.

The first thing she does each visit is to write a schedule on a whiteboard, take a photo and send me the photo. The schedule is not her telling me what to do. I can say no to anything. I generally don’t. I follow her lead. I find it comforting to be told a plan. It makes me feel safe and massively reduces my anxiety. Generally soon after i have been given a schedule the exam life pressure i feel at home will have stopped.

I struggle when home alone because of the pressure to remain safe. My body wants to get spaced out and i have to very strongly keep it on track. That requires focus and endless energy. Being able to let my mind wonder and be more myself for a short while is extremely relaxing. Which means better sleep, and more spoons!

The babysitter who visits is an expert in autism. We use techniques she uses in the school (like the schedule) and they are very effective. We try lots and things till something works then add it to the toolkit.

Why not use a different word.

I use the term babysitter and i know it makes some people uncomfortable. They quite rightly point out i am not a baby.

I use the term for two reasons. First is that it’s the term the babysitter herself uses to describe herself. Secondly i can’t find another term which is as well understood to mean what we need it to mean.

“Floating Support”, “PA” etc just don’t work. “Carer” is to vague and while she cares for me, “carer” feels very institutional.

She is a babysitter, hired via a babysitting website and paid by the hour to “babysit”. She’s using the same techniques and tools. She has said with autism the age of the person is just a number and not important.

Final Thoughts.

There has been 10 version of this post. Its part of me accepting myself and its hard work. Autism acceptance it not about banners or ribbons for me. Its about being less harsh on myself.

If i accept i need help, then i also get to arrange it and use it on my terms to meet my goals. So partly this post is for me, its my “line in the sand”.

Accepting i need support (and accepting that a babysitter!) is really key to my future. I need to do lots of work before i get my speech and skills back. I am extremely happy that i have a good person helping me and i don’t think preconceptions about the job title should change anything.

Im jamie, I’m 26 and i have a babysitter. It really works and i am proud of it because it enabled me to achieve my goals!

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Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
Lion: @Lickr