Contemplating a new schedule of activities is a slow process. No change can be too sudden, nor too extreme, or we will not implement the changes successfully. Having had the success of withdrawing certain medication, our hope is that a greater acceptance and increased desire to get out and about will become natural once again for Marc.
Taking inspiration from our cats – in particular Mr Lockwood – we spend time talking it through, recalling the fun times we once had and try to set a healthy anticipation ahead of stepping out.
Yesterday was not so good. A level of anxiety built up through the day, worrying about crowds, noise, cars. We addressed each one. Talked it through, and explained what we would do to enjoy the outing. We checked our grab-bag, made sure the headphones and iPod were packed (a new technique we have introduced in case of noise) and calm returned towards the end of the day.
This morning, with the exception of repeatedly asking me if I was “definitely coming too” (to which I repeatedly replied that I was. This is still a reaction from family bereavement over three years ago, where Marc still struggles to understand and accept death, and fears we may not ‘come back’ if we are not actually with him) we were still pleased to set off. First stop was an early cup of coffee at the social lounge for special needs patrons and their carers. The lady who runs it, was good enough to understand Marc’s particular sensitivities and turned the piped music down. There was only half a dozen people there as we were so early, but ideal to encourage him to go back to this once loved place. After an hour, others started arriving and it was very noticeable that Marc’s mood was changing and his body language suggested anxiousness creeping in.
A service provider asked Marc ‘what would you like to do Marc’ …… nothing! Understanding what I now do, this had posed a question that just raised confusion totally. You can’t ask someone (at least some) with Autism an open question like this as it can not be processed and the ‘fight or flight’ response sets in, and a meltdown could follow out of fear of not knowing, or understanding what had been asked and how to reply.
Delighted by what I have learned, – copious amount of reading and talking with professionals in this area – and back up plans Marc and I had discussed previously (though likely forgotten now by Marc) I was able to take charge and told Marc, “we are now going to the Park and sit on the bench to watch the fountain” getting up as I was talking, Marc followed my example and although we left the social lounge without him saying goodbye to those he knew, we left, went to the park and sat in the sun watching the world go by.
The open space, the quietness of the largely quiet park – and a cup of tea from the cafe – all helped calm his fears and he began chatting happily again.
It was great to get out again, it is totally confining to care for someone with Autism without proper and professional support. I have started ‘a parents journal‘ that captures some of the feelings we as Marc’s Mum and Dad go through, and our approach to his care and support as we walk this path less traveled. It may be darker in parts, as I share our ups and downs as parents, but I hope it will provide those in a similar situation, something they can relate to and hopefully take strength from, realising they are not alone
We have engaged with ‘Mind’ a charity that supports those with Mental Health issues and in particular because they organise ‘mindfulness’ walks. They have been very good to organise wheelchair friendly routes when Marc and I turn up. To this end, we have a new Wheelchair being delivered tomorrow – with added drive wheel and motor to help me push up hills (there are places that the power chair is inappropriate as Marc could steer off the path if he has a seizure, so we save that for wide open spaces) – The park where we sat today is where one of these walks takes place, the familiarisation will make the walk so much easier when we join them, rather than it being completely new.
Our new schedule is slowly taking shape and the door is opening 🙂