Saturday, 25 January 2014

Christmas 2013

Christmas day is a day to celebrate the birth of our Lord, Jesus Christ. Weather you believe or not, you are likely to have celebrated, along with most of the world, with a visit from 'santa' and presents under the tree. A day of excitement, joy, drinking, eating and meeting family or friends.
An autism Christmas can be so different. Some autistic children (or teenagers/adults) cant cope with the stress of a huge change of routine. Some can't cope with a houseful of people, or the mass of presents that have been appearing. Whilst a normal family day will incur excited children ripping paper off their presents and happily displaying what's inside, an autistic family day can vary so much from this. I don't think you can really understand unless you have lived it. Autism means the normal understanding isn't there, the reaction to stress is not the same and there is confusion on what's considered an exciting day for others. The children often can't cope with opening presents, or don't understand the point. Some can't cope with what they get and can have huge meltdowns because it was not what they expected inside the wrapping. Its not because they are spoilt, just that they don't understand. They may think the present contains something and when they open it and are wrong, they just cannot adjust themselves to the unexpected situation. Then they react in the only way they can express themselves. It makes family life hard, never knowing what will cause the next meltdown and if they will appreciate the gift, or will it cause a upset. The way each child copes will vary, hugely. Our daughter is generally really good with presents, she produced a long list of useless items, but she is generally happy to get one or two from her list. We have never given her 'everything' she asks for. She understands finances mean she cant have it all. And she copes well. This year, she seemed a little quiet after opening everything.  We knew we had missed something that was important to her but when she goes quiet, its best left alone. A few hours later, she told me she hadn't received any dolls. (she wanted a few, well, a lot really). She had received lots of other stuff she was happy with but obviously she really wanted one or two of these dolls. She was calm. She just told me she really wanted them for her birthday. I agreed I would buy them for her then. All was calm. With some autistic children, they cant rationalise like that. They are not always able to communicate their feelings, so parents are left guessing what they have done wrong.

We had a peaceful day. Christmas lunch was eaten by all. Daughter took hers off to her room to eat, she doesn't like eating in front of people at the minute, we had a guest for dinner, so agreed in advance she didn't have to stay if she didn't want to. Maybe it seems like giving in. But if you appreciate that she is not 'normal', you have to make allowances. Letting her go was agreed in advance to ensure there were no anxieties around lunch at all, this meant no meltdowns over eating, and even more importantly, she ate a fair bit. PDA is a type of autism which either causes or is caused by very high anxiety levels. In order to maintain peace, we aim to lower daughters stress levels, then the calmer she is. We try as much as we can to minimise anxiety for her. It may seem like molly-coddling but when you see a disabled child who is different in physical appearance, you adjust life to help them. Its no different with a mental health condition. Although its harder because the general public cant see the child is different. All they see is a child, who should have grown out of tantrums, throwing a huge wobbly where ever they are. Autism cant be disciplined out of a child, nor can a meltdown be stopped with a simple request. If an autistic child isn't coping with something, then they will meltdown. And they don't care who sees it.
For anyone who has not read my previous posts, I am blogging about our 9 year old daughter. We have struggled for years, she has been assessed 3 times but is yet to get an official diagnosis. I am fighting for her and have been for a long time. I believe she has PDA autism. The NHS don't recognise it despite it being recognised for over 30 years by specialists, and almost 10 years by the National Autistic Society. I believe this needs changing and I am trying to change this. If you have not done so already, please sign and share the petition. There are hundreds of families out there who are fighting for their kids. If you would like any more information on PDA, see my other blogs where you will find some more detail and some links to follow. For any of you who have not yet done so, please sign the petition to get PDA recognised, just follow the link below, it only takes a minute.

Its the end of Christmas day 2013. A day to be thankful. Thankful for our Saviour who we have all celebrated today and a day to be thankful for the good times with our children, thankful for the food, drink, house and clothing we have. I missed church today, but I enjoyed time with my children and I am thankful for that. Our church always finished with the blessing. As its Christmas day, I will take the liberty of finishing with it too.
May the Peace of the Lord be always with you. Amen.

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