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Sunday, 10 December 2017

Changes beyond our control

We all know that change can be a problem for our people with PDA and autism. When anything changes, that they did not know about, plan, and indeed change themselves, it means something happened that they did not have control over and this raises their anxiety. We have found that even when we have involved our children in every step of a planned change, and given them control of it, hey still struggle to cope with their raised anxiety levels once the change has been carried out. Conversely, we have also worried ourselves over making changes, such as moving furniture around or buying a new fridge, taken our time, sussed out their opinions and then, when we have finally made the change, they have barely noticed.

Not only have we had one unwell child here this past week, who has had to become our priority when making decisions around activities and outings, but also we have had a more positive and exciting change here- snow!


We used to live a lot further south than we do now, closer to the sea, so we rarely had snow, and when we did it would be gone as fast as it arrived. I have memories of when my two eldest were younger and it snowed one day. School was closed for the day due to the playground not being 100% safe, so we grabbed our trays and headed for the park. Within half an hour we had one broken tray, one little child in tears wanting to go home - not linked to the broken tray- and one desperate to stay playing in the melting, muddy snow.

In contrast to this, we have had three days of snow here- enough to build a snowman each time- in the past two weeks. Before this, the last snow we had saw our eldest daughter outside, playing in the snow at 4am! Needless to say we had to bring her inside and warm her up again, try to settle her back to sleep, ready to play outside in the later morning. She hasn't done that this time thankfully, but I have woken each morning just in case and have been listening out, just to be sure.

In our freezer right now, we have a plastic container with a piece of snow from yesterday's snowfall safely inside. This may seem like any old piece of snow to the uneducated, but to her- and us- it is her snow dog's ear. We also have a pair of socks and a stick that were his ears and tail (tail yesterday, then re-purposed on today's snow dog as ears). We had similar items in our freezer for months after the last snowfall- she bonds to things very easily, and they become like friends to her, so the process of them leaving her is like losing a friend would be to others. (and no, she does not have attachment disorder, was not neglected as a baby).

We also have two laminated sheets of photos of them all playing in the snow we have had this past two weeks so they can remind themselves of the fun they have had, and see the snowdogs too. I hope it helps her.

Our youngest, who has been unwell this week, is not as keen on snow as her big sister. She doesn't feel the cold as much as the rest of us- often wants ice, slush puppies etc when we are cold and outside, takes her clothes off when we are all wrapped up due to her sensory processing difficulties- but snow seems to be different to her. I have not worked out whether it is the feel of it, the way it makes everything look different, the sound of walking on it, the fact that it doesn't feel as it looks, or just that it is so cold that she doesn't like, but she will come out in the snow for the shortest of time, then return inside to sit by the window and watch the snow fall and us play. I can't help but feel a little sad for her about this, but as a child I dreamed of being snowed in and having to tunnel out (I still do if I am totally honest) so perhaps snow means something different to me than to her.
Our eldest daughter loves snow more than I can express. She gets equally excited about snow as her birthday or Christmas- hence being out in the garden at 4am that morning. As soon as she hears mention of snow she beams with glee. I wish the weather forecasters and media wouldn't forecast or advertise incoming snowfall unless they are 100% sure of it though as she has been disappointed this way many times. We are hopeful that this will ease with age for her, and that she will be able to understand better that snow cannot last forever here, will be fin whilst it lasts and then melt. As it is though, she loves to play in the snow- repeatedly wanting snowball fights and to build a snowman or a snowdog- but struggles hugely with the loss of the snow and her creations with it. She loves the way it makes everything appear, loves the cold feel of the snow in her hands and hair, enjoys wrapping up warm to venture outside, and thoroughly enjoys a gentle and controlled snowball fight with us.
Our eldest is still struggling with his low mood and poor sleep, so the snow hasn't had the same effect this time around that it normally would, but he has still managed to get outside into the garden to play a little. He has always loved the snow- he is very physical and competitive, so the idea of being able to throw snowballs suits him to a tee. Surprisingly though, today he has been too scared to get in the sleigh (I pulled my eldest daughter to the shops in it earlier today with her screaming a mixture of enjoyment and terror all the way there). Despite him detesting the feel of wearing a coat or jumper, he happily dons them, and more, in order to play in the snow- play for him consists of shoveling snow into the wheelbarrow repeatedly, throwing snowballs (redirected to throwing them at the house walls) and trying to entice others into a snowball fight (which usually ends in tears). I was so pleased to see him outside this past couple of days though. It is so difficult to coax him out of the house lately that we have resorted to gradual exposure to leaving the house in order to try and reduce his anxiety over a period of time. Christmas markets/shopping are out of the question for him, but he will still go to a couple of specific things, so we try and cram everything we need to do around those. We have plans to go to a fair in the next few weeks so are building him up to that gradually (bright lights, movement, loud music, lots of people, possibly rain/snow, no car park near by.....but once they are there and fully prepared they all love it).
I was so desperate to get out of the house today that I offered my two eldest children cash to spend in the shop if they came with me- plus a sleigh ride on the way. My eldest daughter would have come with me anyway, regardless of sleigh or money, but I really wanted both of them to come with me, to get some fresh air out of our garden, to see the snow away from our street, and get some exercise. After a lot of bargaining we all went together. It cost me £4.70 and a compacted ice ball thrown at my head, but we got out. The unexpected bonus on the walk home through the park, was that my daughter started playing alongside another girl too (until she slipped on the ice). My son got sent home after throwing the ice ball at me- it hurt, and unfortunately for him he is a good shot, but I knew that from there nothing good was going to happen. Overall I still count it as a good outing though, as far as things go here.

When snow comes, changes everything, causes such excitement and then leaves it can be hard to process, explain and accept. It can cause a barrage of emotions and anxiety in a short space of time. It is extremely good fun and you get to play games that are only appropriate in the snow, you gladly spend time outside with water falling from the sky (in general, for limited time...) and you appreciate your central heating like never before. Similar issues come with birthdays, Christmas, illnesses and more. We cannot control any of these, neither can our children, but we can help them understand that changes like these aren't all negative or permanent, but have positive sides too.

We will not ever stop our children from having to face changes, never shelter them from life, and always encourage them to talk/write/draw/act about their worries and anxieties so we can help them through them, making each time easier for them. I hope this will help them grow into adults who can manage their anxiety and struggles enough to live as independently as possible.



Obviously what works for us might not work for you, and vice versa.

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