Well we've had a nice half term break and got out a few times this week. I love going to the cinema with my boys, we have to divide cinema visits up now as my kids like different movies as they have got older but I take this opportunity to have some well needed 'one on one' time with each of them.
My son doesn't have a problem with the cinema too much only that he needs to cram in the latest animated offering from Disney Pixar, a Star Wars movie now and again and keep up to date with any Thomas and Friends movies but that's his limit. There is now a way to visit the cinema though if your child or young person does have problems with the loud sound and the theatre being too dark. This can effect someone with massive sensory issues and in the past it's just been virtually impossible to go. Dimensions are a charity who support people with Autism, learning difficulties and complex needs, they have organised Autism Friendly Cinema Screenings with all the major cinema chains now. Across the UK you can see various films every month with the sound turned down lower, the lights up slightly so it's not so dark. We have been to support these sessions and I can honestly say they are a joy to go to. It's a very relaxed atmosphere where parents can relax and not worry what anyone else thinks as everyone is in the same boat. Children can wonder around and in one particular film we joined in with the audience cheering out loud at the good bits. So if you haven't tried these session and you find regular sessions a bit tricky do try them as it can help. There are even sessions now for young adults with Autism too in some selected cinemas which I think is a great progression as it's not always the children's films where people need assistance. For more information about Dimensions and what sessions are available you can go to their website here at www.dimensions-uk.org/get-involved/campaigns/autism-friendly-cinema-screenings/ Don't forget as well that you may qualify for a CEA card to use at the cinema, this means that when visiting the cinema and you buy your young person a ticket, you as a carer go free so it's well worth applying for. All the information about the CEA Card and whether you are eligible for one go to: www.ceacard.co.uk/index.php I do hope the school holidays were ok for all of you out there too, let me know what you got up to. Thank you for reading today, join me again tomorrow for Pass the Remote but for now take care.
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Its been a good week of support groups this week and one theme to seemed to grab me about some discussions was how we as parents always have to find a balance between what our kids are capable of and what they struggle with.
If you've filled in any form about your child with Autism you'll know it becomes a time to reflect on the worse case scenarios and a lot of the time thinking of the negatives. I attended an annual review the other week for my sons EHCP (Education Health Care Plan) at his college. My son also attended and was only able to give limited input but I do love the fact that he is included in these discussions whether he can answer questions or not, after all it is his life. I came away with mixed feelings really knowing that his progress is really good but then I feel for him on the topics he has to work to improve, as it's always in the back of mind as to whether he'll ever achieve them. That's just negative thinking though isn't it? It does get you down though sometimes. I had another discussion this week about adulthood and Autism. My son turns eighteen this year so for me this made me think about everything to come. Will he ever be independent? Will I be caring for him the rest of my life? What happens at eighteen? Do I still control his decisions as a parent or do I need to consider a power of attorney? These are all things I will consider in the coming months. I can tell you though I will continue to try and help him to be as independent as possible after all who will look after him after I'm gone? I'm so used to making a lot of decisions in his childhood and it is sometimes hard to shake that responsibility off. If you have other children who are not on the spectrum then they progress into independence gradually and us as parents learn to let go gradually too but with our kids with Autism I personally feel I'll never let go. For now I know I'm the best person to care for my son and I've decided that I will just cross every bridge as it appears, I'll take advice and listen to others who have been through this stage already as that's the best thing I can do and hopefully things will work out. I think I'm going to find out how different the adult services are compared with children's services and I feel if it needs shaking up maybe I'm in a situation where I can along with my fellow parents. Can we conqueror this? YES WE CAN!!! Whenever I feel a bit down or beaten by Autism I start to think about what can be done and bring it around to the positive. I have to as being positive is the only way I can go forward, if the provision isn't there and available for our kids then lets make it happen. Let me know if you're fighting for services at the moment, feel free to share your stories. For now though take care and please feel free to join me tomorrow for Pass the Remote Sunday. That's what we should do if we don't understand isn't it? Hold your hand up and say " I don't understand could you explain'. Unfortunately a lot of us don't and make instant judgements on people which a lot of the time are not true.
It's a minefield in the world of autism and sometimes when it comes to making decisions your'e dammed if you do, dammed if you don't. In some instances there will always be someone ready to criticise. We've all done it at some point. Yes I have, I made a quick judgment on someones facebook status and didn't think how much my comments would have an impact on that person and I didn't spend anytime to understand their situation. Since that moment I have completely re thought about how I can deal with a situation and try and understand it more. It was a turning point and I wanted to change. I recently read about the new changes to the blue badge application process, giving people with autism and mental health problems a right to be able to apply for one. Now I'll be honest and I'll probably me lynched for this but I struggled to think why? I had concerns that increasing the amount of people who could claim a badge would lead to people with more physical disabilities unable to park due to there being no spaces available. THEN when I visited my support groups I spoke to some people who have had use of the blue badges already and it opened my eyes really. For what would probably not be appropriate for us as a family doesn't mean it wouldn't have a massive impact for someone else. So I've changed my views on so many things because I've stopped and listened first. I blame Facebook for a lot of misguided opinions as people put things out there and we instantly have an opinion, depending on our mood it may not always be the right one. I don't mean to use corny phrases but life with autism is a rollercoaster full of ups and downs, twists and turns and it's a different ride every time as there are different people included. Some may be sick, some may be excited, some may just remain silent but vow never to do it again and that is life. I've had my moments where I've worried whether I've made the right decisions for my son, I've worked all of my life until taking a break for which I'm sure I''m judged heavily but looking back I don't regret a thing, I did what was right to help support my son as a single parent and we got through. I'm now looking forward to getting myself back to where I was and possibly taking a plunge to something even more exciting but no one should criticise anyone for the choices they make. I meet so many people within my voluntary work who feel guilty for claiming benefits, for stopping work, for making the break from a relationship. I would say to these people, do what you feel inside is right and the rest will either understand, if they don't then they are not the people you need around you. Let's join together and try and understand not fight against each other. The National Autistic Society have a motto that says 'until everyone understands' and I like that. I will carry supporting people until then, think we have a long way to go but hey things don't get done without a bit of a campaign and sheer determination. There is a saying by Wayne Dyer which says: When you judge another, you do not define them, you define yourself Something to consider......... Thank you for reading today......join me tomorrow for Pass the Remote but for now take care....... and be nice to each other xx I had a great experience with my son this week whilst shopping in town. I'm working on a few life skills with him so we are learning to use a bank card and he's trying to get his head around using PIN numbers and when to just use contactless. All confusing stuff when in fact the important thing for him is just to get home as soon as possible and un box his new train or rip the cellophane off a new dvd.
So his purchase went over the £30 and we had to result to the PIN number option, I showed him how to pop the number in and got the last two digits wrong. He then shouted at me that in fact his last two digits were....... and then referred to two engines from Thomas and Friends. Well I was bowled over, fancy that! Putting the numbers he wants to remember and matching them to his engines. Genius! one of those Autism moments that makes you think 'I wish I'd thought of that'. I've always been so useless with numbers and remembering phone number, passwords, PIN numbers etc and doing simple arithmetic so this is just a revelation. I suppose it helps if you are a big Thomas and Friends fan and know your engines but for him to link his special interest and make it pro active to functional stuff in life, blooming brilliant I say. I now know my pin by the engines and I can remember my new car registration number thanks to this method. So although I'm doing my best a a parent to guide my son in the right direction, life with autism just goes and kicks you up the arse and makes you feel a bit daft. Love it, all I could do on the way home is tell him how amazing he is......I always will, because what ever his limits and through all his struggles I will be there and do my best by him. I feel though things might reverse the other way around some of the time and he will just continue to give me the bright ideas. So there ya go, I thought I would share that special moment with you. A funny, amazing and proud moment. Good aren't they when they happen? Simple to the rest but are a huge deal to us Autism families. Thanks for reading today.........join me again tomorrow for Pass the Remote, for now though....... Take care. |
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