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For the last 2 years Jeorge has only eaten chips and dry sesame buns from McDonalds. It started as an innocent trip. Jeorge had only been eating sesame buns at home from supermarket along with some custard creams, a chocolate bar and a packet of cheese and onion crisps. Yeah, I know! what a diet!
As a baby, he ate all home cooked food, vegetables, pasta, rice, fruit, cheese & yogurt. It was bliss watching him enjoy all the foods we offered him. As the autism became more predominant within him, his eating habits changed dramatically. He could no longer bear many foods in his mouth. He would gag at watching us eat or cook food and even gag if he saw a human or animal eating on the tv.
We could see this was a struggle for him and very distressing. We spent a long time offering different foods to him until he settled on a small choice of foods. All of which were not my first choice! But he could eat without struggle and to be honest that was what was most important. I didn't want Jeorge to feel punished or stressed around food at all and as we didn't fully understand ourselves why food had become such a difficulty for him, we felt we couldn't pressure him to eat. It wouldn't have been fair or just in our opinions to do so.
I was happy as he was eating some fruit and yogurt amongst the rest of the limited diet. Sadly back to current day we are finding Jeorge has become 'stuck' on the diet of fries and sesame buns. To the point where he will no longer eat them at home with me. The routine of taking him to Mcdonalds to get them has become a part of him eating them. I feel like I have created this dilemma and now am afraid to change it.
The common theme of all the autism families I have either met or read about in my various research avenues is that we are all searching for therapies. Endless searches, phone calls and emails. This is with links we find along the way either recommended or we find by accident. Some are from books we read and recommendations from friends and professionals who may be working with our child at the time.
For me it is a combination of all above. I have over the last few years increased my research, not only for ourselves but for Dazlious and other parents and carers. This is also adding to my knowledge of autism in all its beautiful guises.
What does amaze me is even though I am searching online daily, I do still find incredible new items. Books, or stories of a family or a person with autism, a video made by an autistic person or a sibling. all beautiful inspiring stories of those touched by autism.
Although there can be a lot of stigma attached to autism, along with bullying and suppression of those who are on the spectrum. I see so much love and support for autism too. The passion in and amongst siblings of autistic people is so strong. Watching such videos and reading blogs is an uplifting and empowering feeling as well as an emotional one.
This blog in particular is about not giving up the search for the therapy or concept/approach that will fit right in your own hearts, for your own family and person with autism. There sure is not a one size fits all. Thank goodness we have such a vast variety of blogs and support groups to join and communicate with.
The A word has created quite a buzz all over the country. There are critiques of course, as there are those who are cheering it on. I am the latter, here are my thoughts.
Throughout the show I have experienced many differing views on each scene, finding myself to be super alert and attentive to any mistakes, in my opinion...I became so fixed on looking at it with a critical eye that I was not seeing the whole programme.
Once I realised this, I watched with an open mind. I laughed out loud at some bits, especially the Grandfather, who to me is hilarious. Amidst the laughter is of course in each character, some sadness, a struggle of their own. I feel the show highlights this beautifully. Yes the programme is called the A word and is built around Joe, the lad who has been diagnosed with autism.
Although Joe has challenges in school, or to us it seems he does. Standing against the wall at play time, not joining in with the other children. Not engaging with reading etc. I think the programme highlights that actually for the most part, Joe is completely fine. Of course this is showing one single scenario of someone with autism. The thousands of others who are autistic have their own stories to tell.
For Jeorge, school holidays used to be quite stressful. Mainly, he loves school, the routine of it and the activities they do. We are very blessed that his school, particularly the teachers he has had for the past 2 years are amazing. They are a combination of very experienced, very heart led people, strong, safe and fun. I call them the dream team. 5 students and 4 staff members , 5 when they go on an outing, which is every week at least once.
As time has gone on Jeorge has become used to the pattern of holidays, the flow is now recognised and accepted. We use a picture board for the week which helps Jeorge see what is coming. We also keep his school uniform out by the picture board as another visual for him. When it is the holidays the uniform is replaced with civvie clothes. Each evening I put out photos of what we are doing the next day so he has plenty of time to adjust to the idea. Plus he can judge his morning activities before he feels he can leave for an adventure.
Jeorge was 4 years old when he was diagnosed, we already knew he was autistic, as I had been an early years professional for 15 years. To begin with, even with some knowledge I was terrified. What would this mean for Jeorge? would he ever speak? would he ever stop head banging and crying, screaming and be afraid to go outside? We were drowning and out of our depth. I read so many books and researched so much until I almost drove myself crazy. I worried about dying, something I never worried about previously. Who would look after my darling, precious son, who would understand his needs and who would honour him like we tried our best to do?
Eventually I took advice and stopped reading books and started to listen and feel what we needed as a family, this was our autism. Through the years we have met many families and people on the autistic spectrum, I learnt each of us has our own unique autism. There is no right or wrong way to live or to support. No right or wrong therapy or strategy to try.
Once I stopped trying to please outsiders and other opinions of what we should be doing with Jeorge, as many opinions came to us from all angles, Some of which was shocking which was because of a lack of knowledge and true understanding of Jeorges needs and reasons for such extreme behaviours. Some was perfect for us and helped.
A common theme within the world of autism can be routine, patterns and repetitive behaviours. I have watched Jeorge find comfort in such routines and patterns and also seen him scramble to find one. If he cannot he will create one. The latter happened a lot more when he was younger. Now it seems the coin has been flipped. As his parent I have realised I too have become reliant on such routines and familiarities. Some of those reasons are thinking I am doing the right thing for Jeorge. Sometimes it is fear of upsetting Jeorge so avoiding stress for him. Others it is asking myself the question, 'am I feeling strong enough to cope with trying something new with Jeorge on my own, what if he gets upset or scared, what if people stare and moan? what if I am not able to help him calm? what if he kicks me or headbutts me?'
Fresh off of the press in our lives this morning. Jeorge became confused when Dad came to pick him up to take him to school. Unusual for the upset as this is what happens every Thursday. Except this Thursday was different because Jeorge believed it was Friday. Why?
Due to my changing timetable I asked Jeorge's dad if he could collect Jeorge from school Thursday and keep him overnight, making it an nights sleep over with him. He would then take him to school Friday. This was confusing as I usually collect from school everyday except Friday, when dad does that. Dad doesnt take Jeorge to school on a Friday I do instead. I thought I had done everything I could to help avoid Jeorge being confused.