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End of January Update

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I am writing an end of January update as I find when I complete a blog, I define myself as a person. An idea of me as a person emerges from the fog of who I am. I was awake until 1 a.m. this morning thinking about why I am here. That might sound philosophical, but I was trying to fathom it out – has anyone else had that? It’s baffling to think about life. I said this to grandma today and her attitude is, ‘what’s the point of thinking about it, life is for living’. I am tending to think that too these days. Grandma also said that she learnt about herself as a person, found her way through taking opportunities in life and from that came further opportunities. That’s a very pragmatic approach to life and I think I like it. She admits a few of the opportunities took her in the wrong direction and she had to get back on track. I asked her what was her track; how did she know it? She said ‘ it was whatever felt right for me as long as I carried on learning and growing as a person’. I want to be like that too, and my instincts are that I’m on the right track; communications, speaking and academic work are my opportunities. It feels the right path inside to define who I am. Maybe this is a compass that we all have, but some of us are yet to have found it. So I’m trying to find my path for this year. My instincts tell me it’s communications, using and developing my speech and improving my academic skills.

Finally, the talking Power Point is working. No thanks to my local education authority. I am making my first one tomorrow and I’m  hoping it’s the first of many. I need to get my voice out there and I want to set up my YouTube channel. This is my direction and to be happy and count my blessings. I’ve had the best week ever for a very long time; it has been quiet, calm and fruitful. Grandma is working with me and the programme is dynamic; we are getting through a lot of work. My speech is coming on and the peace is wonderful. I am enjoying life and counting my blessings. Thank you to those who shared the things they are grateful for as I like to know what others think. At the moment, I am very grateful for grandma’s cooking; her gluten and dairy free sticky toffee pudding with caramel sauce is both a revelation and quite the best thing I’ve ever tasted; as is her creamy chicken with coconut and cider apple vinegar sauce. They are good and I’ve developed a taste for vegan and paleo food. I am thinking, I might put links on here to recipes. I need to broaden my blog content and maybe get sponsorship. Blogging can be a good career. I’m being told it’s dinner and I need to go. Take care and find your inner compass.

January Update

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Christmas was great! I got loads of presents that I wanted, including lots of bottles of wine and cider. I’ve discovered that red wine gives me a headache so I’ve given that up. I enjoyed seeing my extended family on Christmas Day and Boxing Day and then sleeping a lot for the rest of that week and walking. New Year’s Eve was the best ever with a walk out and food in my favourite pub, then music and a drink with TV. I enjoyed Jools Holland, the fireworks at midnight and Robbie Williams live after midnight. The general opinion is that he was drugged up the eyeballs and singing flat. Thanks team I thought the atmosphere was quite good!

Into a New Year and resolutions. I am hoping to be less anxious and panicky and I guess I am slightly. Rome wasn’t built in a day and panic doesn’t disappear over night; it is a work in progress and I think too much. However, let me go back to my friend Joanna who also has apraxic speech. She blows me away with her brave attitude on her YouTube channel. She has used her talker so far as she was embarrassed that people wouldn’t understand her. Wow that’s me to a tee. However, I have just finished watching her blog (vlog) and in one she is using her talker and recounts a story about leaving it at home and her coach telling her to use her voice. That is what people tell me. her advice is use your voice first and if people don’t understand use your talker. Then her Christmas video blog she just talks and she sounds great and we all understood her. That was a lesson to me and I need to be more brave this year. I need to not give a **** what others think. I want to follow her example and be more brave. She stands up to be counted and so will I.

Today we did a Zoom meeting and recorded it so that I can practice social scenarios. We are doing more and I am going to get used to seeing and hearing myself. That is the first step before my YouTube channel. We are still having problems with setting up the talking PowerPoint so grandma has engaged someone to do it for us. Thanks Sefton for not answering emails and providing advice. Plus the ‘new’ computer is ****.  Grandma is sorting out more memory for it.

I am making good progress overall but need more time to get my foundation in place; I guess to catch up on missed years that damaged me emotionally. I can see that now I have contact with others with apraxic speech like Joanna. They had the right speech therapy from early on and I am a few years behind and emotionally scarred too. I am getting there but it’s harder but I can see my direction now, my trajectory.  Happy New Year! I am working on counting my blessings and gratitude. My team are great and take no hostages so I am hoping I end up a glass half full person. Instead of just liking my blog I want to know what you are each grateful for. Next time I will talk about karaoke. Have a good January.

December update

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I have been busy this half term. My speech is coming on and that makes me happy. I find my programme very dynamic in a good way. Things are adapted and updated as needed so nothing is ever boring. It’s all very flexible and pared down. I am doing a lot more actual speech and tongue exercises. I can’t express my joy enough that my grandmother is here more to keep it dynamic. There is a downside to that though as she is direct and cuts through crap and has delivered some cutting home truths to me recently. Much as I don’t want to admit it she is true when she bollocks me about my lazy communications. Here’s the thing, I really resent that I have to use a communication aid and others don’t. She is right though as I need a structure in place that supports my developing speech. Initially we had a bit of a stand off. I didn’t get anything unless I asked for it or made it myself. There was one fun Saturday when I refused to ask for or make any food. At dinner time, I was told it would be made but I could eat what I was given and if I didn’t like it then tough. Believe me I would have eaten anything but it was lovely and plentiful. Since then, it’s been less stressful and I am beginning to see the light. Although I know the ‘ins and outs’ of the Mental Capacity Act 2006. However as grandma says, with her weird humour, it will apply to her in a few years. What brave person would try that on!

I was surprised recently and it was because I made assumptions about someone Ive been emailing and messaging in America. I knew she had apraxia of speech but hadn’t realised we were alike. I’m a member of a Facebook group for young adults with dyspraxia/ apraxia. This young female sent me links to her YouTube channel as I want to set one up. When I watched one of her series of videos I was blown away by her braveness. The video topic was instructing people in putting her makeup on. It was a mixture of that and telling people about the impact of her disability. I related most to the fact that she couldn’t demonstrate live as her arms/hands shake too much and that relates to me too (nothing to do with makeup in my case though). Also she was signing and using a communication device. What blew me away was that to me when I chat to her on Facebook she is totally ‘normal’. I had such a smile on my face. I sent her a message to say how inspirational I found her. I’ve spoken to the chair of the group, who is my age and a college student, she is apraxic. She said she had never actually met another person face to face with apraxia of speech; that’s amazing.  We are obviously an elite group and should not be ignored, Next year my plan is to have a YouTube channel and mine is going to cover music, my life and struggles emotionally. We need to stand up and make people take notice.

I am enjoying all of my academic work too. The psychology is good and the English. The whole programme is great. Thanks to the team – you know who you are! There is lots of fun and laughter too, although too much of it is around bodily functions for my liking. Still it makes me laugh and otherwise it would be too intense, We also have chat and cake breaks sometimes which are motivating. I think I must try coffee. I am enjoying being a backing singer for Abba as their backing has a lot of ‘a-ha’ in it. I’m getting the rhythm and beat. There is much talk of getting a karaoke machine and I love the idea. It’s a very serious and professional team so we need lighter moments.

Christmas is coming or Hanukkah or whatever festival of light you celebrate, It’s been a busy and interesting year. The EU referendum and President Trump (how does anyone talk about him without laughing – not in our team anyway!) I think there is a worldwide revolution going on and I love the political debate. No matter what you voted, I feel this political shakeup will eventually settle into a better awareness of balance and power to the people.

I wish you a very merry Christmas or Festival and a happy and healthy 2017. May we all prosper in our endeavours.

My October Update

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I feel that a lot of things are changing and I am happy with that. My month was great and I feel I am gaining in confidence. My speech is improving slowly but steadily; I think you would call it an upward trajectory. Halfterm break was good as we aimed for 12 thousand steps a day and I like a walk with a purpose which means usually towards a pub and a snack. We also went to Blackpool Lights and what a misnomer that is; it should be called Blackpool traffic jam! twenty minutes next to Sooty, Sweep and Soo is more than anyone can take. We turned away from the prom after 20 minutes of Hickory Dickory Dock and headed for pizza and a drink. Martha has been told she can go on her own when she is 21. I hope she has more style.

I have lots of plans that include singing. More accurately as a backing singer. Listening to Abba singing and I make no apologies for that I realised that I could sing the ‘aha’ backing to ‘Voulez vous’. Then as my speech therapist has suggested singing, we decided to add it to my programme. You can get all sorts of backing tracks for karaoke on YouTube. so that’s the plan and my aim is karaoke at Christmas so be warned.

I have been more actively involved with YADA, Young Adults with Dyspraxia/Apraxia. Wow am I beginning to understand about it and how few people there are with it. Most people I am in contact with are in America and we’ve discussed lately how apraxia is added to other diagnoses and not supported to improve. There is something wrong with an assessment system that thinks it is ok to overlook someone’s basic need to talk. How many people are diagnosed with autism at the toddler stage when they have severe dyspraxia. No wonder I hate my local authority. It seems as bad in America.  The people I link with are very strong, very outspoken and do their best to raise awareness. I intend to join them and I am looking into setting up a YouTube channel here, I need to look at some of theirs to see what they’ve done. A suggestion is that I mix my own music as backing as an additional skill. I have been offered support by the husband of one of the team; I’m happy to accept when you are ready.

I feel happy with how things are going with lots of additional activities being added that are helping my speech, my confidence, my autonomy and my social life. I have a great team that are pushing the boundaries. Technology is starting to work better too although it still needs work to be fully effective. I have to say the local authority help has been useless. We have a detailed project plan for social communication and interaction. That includes a framework of Socratic questioning which sounds pompous but it’s just a structure of questions. we used it today in our debate ‘Ghosts – true or false?’ Sorry Alex, I know I freaked you out with details of our resident ghost. Socratic questioning calls for evidence which I gave in plenty. It made me laugh when the computer flashed into life on the interactive board; proof of life on the other side. Alex your face was a picture and I know you believe it. As I told you he is the guardian of the house!!

I am addicted to the series of Sleepy Hollow on Fire TV. The first time I watched it I felt so inadequate. This man rises from the dead after 250 years in limbo and is so cool. He marches around kicking butt. he is tall, exotic looking with his hair tied back and I so want to be him. He is fighting the four horsemen of the apocalypse and there is much cutting off of heads. We have had a native American shaman putting him and his sidekick into a dream state to fight the Sandman who looks like he is a nasty reject from In the Night Garden. Sleep well children!

Anyway I must go as it’s Friday night and we have 13K steps to walk and two pubs to visit before dinner. It’s not my turn to pay so I shall enjoy it more. Take care I will talk to you soon.

Recent Activities

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Summer is over and I so enjoyed it. We had a staycation as we went to America in June. So we walked, sorted the house out and ate out a lot. We also sorted the garden out with lots of plants and nice furniture. I helped with that too and it involved a lot of trips to the local tip. It may sound boring but a glass of chilled wine in the garden was nice after a day of doing little or listening to music. It was great!

It’s September and my sister and her cousin have started school, so life feels flat and boring. It was nice hearing them playing in the garden and now apparently they are so tired they’re going to bed early which is very unlike them. That to me epitomises September.

I am back in my education programme and having to work hard. The team has changed and of course Grandma is here all the time at the moment while she builds up her consultancy. The programme has settled down quicker this year. I have made good progress in my speech and the phrase I’m working on at the moment is ‘I want more wine’. That’s what I call a functional phrase and I’m very motivated; I’m sure none of you are surprised. I dare not tell you some of my planned future phrases but I’m currently working on /sh/ and /f/.

Finally the technology in the classroom is getting sorted and the Smart Board is working. Sefton didn’t sort it so grandma got a man in and he sorted it. So now I have consonants on the Interactive Board with embedded motor plan videos and then practice words which shows me then I try and it records me. I love that approach and it’s great to hear myself. That’s a big change as a few years ago I hated hearing myself – progress. Grandma has set up a talking PowerPoint that we tried today and I enjoyed that too. I will be starting speed typing next week which I’m looking forward to.

Grandma and I sat down and have developed a themed project for social communication that I’m looking forward to as there will be autumn events as well as class-based activities. This will cover all strands of social interaction and communication including speech, iPad, written and technology. I will be project manager for family autumn events. I have to plan, invite, budget, shop and help prepare. Online shopping here I come. I think my aunt and two cousins are coming next weekend and staying over. I need to sort that out this weekend and it has to be autumn themed but be good for adults and little girls too. I’m thinking a treasure hunt, blackberry picking and lots of wine after they’ve gone to bed. Would it be cheating to have huge pizzas (my current favourite food)  or autumnal Chinese takeout? I will let you know more about the themed project next time.

How am I?  I’m learning to understand myself a bit more and working on understanding the basis of my emotional problems. Grandma now has a super organised and decorated office and we use it for lots of activities. I did psychology in here this morning and loved it. It’s peaceful and easy to concentrate – just so good an environment. I’m doing the psychology of memory storage and retrieval and I’m going to use it for honing my study skills. Life is just so good.

Anyway Happy Friday as Americans say and I hope you all have an ‘awesome’ weekend. I’m off for American pizza and Austrian wine. I can’t claim to be sophisticated but I enjoy my food. Until next time take care!!