I hope that my friends 'get it'. That they understand that when I invite them round to our place for coffee, or lunch or a BBQ, it's not because I have an innate desire to always be the host, and it's not because I don't want to visit their beautiful houses which are all less messy than ours for sure. It's not because I don't want to go out, and it's not because I don't want to make the effort.
It is simply because it is easier for me to feel relaxed and enjoy the company of others when I know I don't have to be on high alert. Sasha is comfortable in this house and can escape to her own space. Here, I don't have to field her getting upset/overwhelmed and demanding to go home every few minutes, and I don't have to worry that she is going to pick the paint off someone else's wall (ahem. Sorry holiday home).
So does this mean we can never go out, or that we never try to do different things?
Back in the toddler days, I had to gradually admit defeat and stop attending Dinky Dancers or the music sessions that I took Tamsin along to because of the interference from Sasha. I began to feel like a prisoner in my own home. Isolated. Like an outcast, unable to socialise. Boy, I wanted to socialise. Still do, always. That's a part of me, as much as the autism is a part of Sasha. I could never be described as the life and soul of the party, but I love people - watching them, being around them, interacting with them. All of those activities are generally very difficult for people with autism as many of them have not learnt the same 'social rules' which typically developing children seem to learn by osmosis.
Any simple trip out of our house involves forward thinking and planning. Getting Sasha 'in the right mood' is not a simple task. The planning generally starts in advance, talking her through it, providing options, always having a plan B. Occasionally though, telling her at the last minute proves to be a better strategy so she doesn't have time to worry or get too confused about the week's activities. It's a guessing game as to which of those strategies (advance warning or last minute) is best.
Using the right language and never being rushed (ha! every morning before school) - more specifically, never giving the impression of rushing, is key. Even when you are late, there needs to be a smile on the face and an 'oh well, it doesn't matter' tone to your voice, or else you are going nowhere. Children with PDA (Pathological Demand Avoidance) cannot be 'made' to do things you want at the instant you want them to; they can dig their heels in harder than the 'average' child. Leaving the house in the first place is just one example of a difficult time.
It is still difficult for us to arrange a meeting with other people outside of our own home. Sasha loves swimming and would probably agree to go to any new swimming pool (in her own time of course), but other activities can be limited. She loves crazy golf - but not the one with the big dinosaurs which make a noise, or the one where the queues are too long. Quiet, indoor places are generally worth a try if there is some activity that holds her attention (looking at exhibits or reading information boards doesn't fall under that category funnily enough) but we're never likely able to stay for long.
As much as Sasha loves being outdoors, she hates rain with a passion (even little drops, as she told me yesterday). So we have to be sure it's dry before we go, or that it will be fine, or that we have raincoats, umbrellas and an escape plan. Walking up a hill to see the view, having a pub lunch, or ambling round a pretty village looking at craft shops or enjoying an afternoon tea are activities I would do myself quite happily, but which just don't work with Sasha. She is now seven, not a toddler; I'm pretty sure though that she won't be agreeing to do that type of relaxed activity any time soon, if ever. Our eldest, Tamsin, may also not naturally choose to do those activities, but could easily be persuaded to without much trouble and would do it happily to join in and just be with friends.
Summer holidays tend to reinforce these feelings of not being able to live the life I wish I could. I guess when I post pictures of us in different places, or on holiday, others see us having fun, and think 'how hard can it be?'. We do go out of course, and we do try different places and new activities, but we try and judge when the time is right and when it might work best. We have to use strategies for Sasha which I never would for Tamsin; an ipad or a visit to that famous chip shop before going for tea have been used and appreciated more than once.
I hope that our friends understand that I would love to be joining in with group picnics, and meetups in the park, attending festivals and going to the zoo or any other such group activities. I sometimes say no to suggestions because I don't like the idea of being flaky; of turning up somewhere but possibly having to leave 10 minutes later due to mass meltdown. I hope I'm not judged as being lazy or not trying hard enough. Sometimes I'll say yes because I'm desperate for me and Tamsin to try and enjoy a day out just like other families would be doing. Other times I have to be non-committal and last minute - very difficult for someone like me who yearns to be organised and plan ahead. The 'other' me would always offer to car share, would always be planning days out with friends to somewhere new and exciting, would rather be free and easy.
As a family we've all learnt how to manage Sasha better. We know what her stress factors are, we know what she likes to do and how she can be persuaded - some of the time. The best skill we've learned is how to 'run with it' and be flexible. Getting out of the house has become easier with Sasha but it's still not as easy as it would be with just Tamsin. I just hope that friends can understand that.
