Reflection of Successes of 2013

As it approaches midnight and the dawn of a new year, it is time for reflection and although there have been lots of meltdowns and daily sessions of stress and anxiety this year, there have been a lot of positive things achieved as well. 

The biggest thing to help the development of our youngest son has been the Statement of Education that he was awarded this summer after a 6 month process involving lots of reports written by various professionals as well as a lengthy one by myself.  He now has the 1:1 support at school that he needs to function on a daily basis so that he has the chance to reach his full potential. Without this he would not be able to access his sensory diet of high impact activities every 15 minutes and without that his world would fall apart.  

Our daughter has shone in her drama group that she attends outside of school and has performed on the West End stage for the second time as well as at a local show and the school panto. Being someone else gives her a new lease of life as she can hide behind the character. Her confidence has doubled and she's found an interest she enjoys. 

The biggest breakthrough for her has been realising that it is ok to ask for help and learning to discuss her emotions. It's still early days but we are making progress which can only help with her development for independence as she grows up. 

Our youngest son has begun to thrive with the help of regular dietician appointments.  As well as his daily protein milkshake to boost his vitamin intake, he has now tried 2 new foods this year - apricots and fruit winders.  This may seem a small accomplishment and something most parents take for granted, but as a parent of ASD children it is a small miracle to add colour to their diet as it is generally very bland in its choice and brown in colour. If our youngest son had his way he would live on yorkshire puddings!

We have finished the year on a good note with all 3 kids having a playdate with friends and for two hours they played nicely with no arguments. Three of the five kids have ASD but the shared understanding between them seems to aid better play and it helps the siblings to realise there are others that live in their shoes and understand what it is like to have a sibling with ASD and the challenges it can bring to daily life.

My goal for 2014 is to find some more 'me time', so that I can enjoy my craft activities, read the mountain of books that are building up around me and continue to walk/jog my way to good health.  I will continue with my volunteer work and increase my knowledge of ASD so that I can ensure that all our kids get the best start in life that they deserve.

Happy New Year to you all.

Christmas Experience

The anticipation of Father Christmas arriving made bedtime on Christmas Eve more stressful then normal. Our two oldest children were keen to go to bed early so that their presents would be delivered but our youngest son had other ideas. His stocking was put under the Christmas tree as he didn't want Father Christmas entering his bedroom. Then he decided he couldn't sleep in his bedroom and wanted to stay downstairs. This was not helping with my plan of laying the presents under the tree without little eyes watching. We let him watch a film in the hope that he would fall asleep but instead he woke up more!! By 9.30pm he asked if he should go to sleep to which we both answered yes!! It was 11pm before he gave in and Father Christmas could deliver his presents. 

At 12.45am our eldest son came bouncing into our bedroom to say that Father Christmas had filled the stocking at the end of his bed. I quickly told him to go back to bed for a bit longer and then was woken up again at 1am by my mobile phone beeping. It was our daughter texting me to wish me a Merry Christmas. I discovered the next day that she had texted everyone on her contact list at 1am!! As she was awake she thought everyone else should be. 

By 6am our three children were all awake and desperate to go downstairs and see what Father Christmas had left for them. As soon as our youngest son walked downstairs he saw his stunt scooter so he was happy to ride around the house whilst his siblings enjoyed unwrapping their presents. 

Our living room is normally filled with sensory toys and we have now gained a few more in the shape of moon shoes, wobble deck, fidget toys and a keyboard. 

By lunchtime the anxiety levels were rising again and our youngest son was not going to join us for Christmas dinner. Some battles are not worth having so we let him choose what he wanted to eat - mini eggs and sausage roll. Not your typical Christmas dinner but he was happy. Then the rest of the day was spent in meltdown with shouting, screeching, sobbing and hiding under things so that he felt secure. By early evening our youngest son was calm again sitting on a rocking chair chewing a chewy stixx and squeezing a light up ball.  He was happy and that is all that matters.  

Christmas Anxiety is starting to show

The stress of Christmas is showing in our house and our youngest son has spent most of the time since he packed up school on Friday making dens under our dining table and chairs with quilts and cushions, so that he can shut himself off from the world.  It is keeping him calm and gives him a place to retreat when everything becomes too much for him.

 

Christmas for our children is spread over a week.  They will be getting a present from one set of grandparents tomorrow, have another family present on Christmas Eve, then on Christmas Day they will have their presents from Father Christmas and us.  Next weekend they will receive their presents from my mum.  As well as making the magic of Christmas last that much longer, it also stops it becoming an overwhelming event and seems easier for the kids to manage this way.  If we put all their presents out on Christmas Day, our ASD children would not know where to start and Christmas Day would quickly disintegrate into a huge meltdown.  It is likely there will be mini meltdowns this week and we expect them to happen, but they will be easier to manage.

We have double checked with family that none of our youngest son’s presents have been wrapped up, as he came home from school with a present on Friday that was wrapped and it caused him to scream and shout for an hour and in his words 'my brain is angry'.  When he sees one present like this he panics that Father Christmas will forget to keep his presents unwrapped.  It seems such a small thing, but the unknown element of a wrapped present can be a frightening concept to someone with ASD.

 

Christmas Tree

School packed up yesterday, which means it is now time to start getting ready for Christmas at home.  As our youngest son suffers a lot of anxiety around the idea of Christmas, we find it easier for him if we start getting in the Christmas mood once the school holidays have begun.  

I put the Christmas tree up whilst the kids were at school and hung the lights on it, then asked them to decorate it together when they got home from school.  This caused so many arguments, as our youngest son wanted to hang every pair of pants/boxer shorts on it that he owns and our other son was horrified at the idea.  I made the mistake of getting a book from the library called 'Aliens love Panta Claus' and read it to our youngest son.  Aliens in the book are Santa's helpers and they decorate trees with underpants and so our youngest son decided that when our Christmas tree came out of the loft, we would decorate it with pants.  I had hoped that 3 weeks later, he would have forgotten about the idea.  Whilst our two sons were arguing over what decorations were going to be put on the tree, our daughter decided she would go ahead and decorate it.  This caused a flood of tears, as everyone wanted to decorate the tree in their own way and no one agreed on anything that the other one wanted.  

In the end, I gave our eldest son the job of putting the tinsel on the tree, our daughter put the baubles and star on the top and our youngest son was allowed to put his personal touch to the tree.  He added his toy Disney planes, soft toys and one pair of clean Spiderman boxer shorts.  It may not be a conventional looking Christmas tree, but it is still standing and in previous years our youngest son has knocked it to the ground.  It will probably be back down again in less than a week, as that will be as long as our youngest son can tolerate the change to the room, but we are hoping that as he gets older, the tree can come our earlier each year.

We need to look after ourselves

I am a great one for giving advice to friends to look after themselves but rarely follow it myself!! Last week saw me struck down with the flu and resulted in me being in bed for nearly 3 days which is unheard of for me. By now I should have learnt, as every year near Christmas I get run down due to the extra anxiety Christmas puts on our youngest son, which results in him sleeping less than normal and being wound up like a 'Duracell bunny'. This in turn means I sleep less and my immune system plummets and I seem to pick up any germ that is going!   

Losing 3lbs over the past week may help kick start my annual get fit/weight loss campaign for the new year. However, I'm also going to use it as a wake up call to remind myself that I need to take time out to relax, eat regular, healthy meals, exercise and have fun so that I can stay fit and healthy.  

Strategies to cope with Christmas

With December here tomorrow, Christmas is just around the corner and at the moment if I am honest, I am thinking ‘roll on January’, as the heightened levels of anxiety in our household are soaring through the roof.  It’s such a shame as I have always found Christmas to be a magical time of year, but unfortunately for children on the spectrum, it can be a stressful time as normal routines are thrown out the window and they are confronted with sensory overload.  To try and make things run smoother for our ASD children we have adopted the following strategies:

• Countdown chart to show how many days until it is Christmas Day.

• Put our Christmas tree up once the children have packed up from school.  This seems to help with them understanding that now school has finished, it is time to celebrate Christmas at home.  If we put up our tree this weekend, it would be very hard for our youngest son to understand that it is not Christmas for another 24 days, as he has very little awareness of the concept of time.  He expects things to happen in the here and now.  It also reduces the stress of having to move furniture around in our living room for too long to accommodate the Christmas tree.  Our youngest son has been known to knock over our 6ft Christmas tree when he has gone into a meltdown.

• Last year we let our youngest son decorate the Christmas tree, as we thought he would be more accepting of it and he chose to put his soft toys on it.  Although it is not what we would have chosen, it did mean that the tree stayed up for a week without being toppled over.  This week we have read a book called ‘Aliens Love Panta Claus’ about aliens that help Father Christmas deliver his presents and they decorate Christmas trees with underpants.  I’m hoping this idea does not stick in our youngest son’s mind for too long, as otherwise we could have a very unusual tree this year!!

• We keep Christmas Day and Boxing Day just for us at home and then see family before and after Christmas, so that presents and guests are not all received at the same time.  If we visit family or they come to us, we have a quiet area, so that our ASD children can spend some time away from everything if it becomes too much for them.

• As mentioned in an earlier blog, our youngest son does not like his presents wrapped up, so his are left unwrapped under the tree and in his stocking.  He also requests that his stocking is kept downstairs and not in his room, as he doesn’t want Father Christmas to go into his bedroom.

We don’t expect to have a tantrum free Christmas, but fingers crossed each year it will get easier and maybe one year we will have a tree decorated with tinsel, baubles and decorations, rather than Mickey Mouse and the Gruffalo!

Advent Tree

Preparation is going to be the key to helping our 2 ASD children cope with all the changes to normal routine next month in the run up to Christmas.  I have come across an idea which I'm going to use this year to see if it helps them both. 

Our daughter has sat down with me and come up with 24 different activities that we can do with a Christmas theme from 1 - 24 December.  They are simple ideas that range from decorating our Christmas tree, choosing the tv programmes we want to watch as a family over Christmas, hand delivering Christmas cards to watching our daughter perform in her school panto.  I have written them all onto pieces of card which I've laminated and hung on a driftwood shape tree we have at home. 

Everyday in December we will choose one activity to do and I have purposefully made some of them easy to do after a day at school like having hot chocolate and marshmallows or reading a Christmas story.

 

Fingers crossed it will get all three children into the festive spirit, but it will also help our daughter and youngest son to prepare for what can be the biggest sensory overload they will experience all year long.