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it has been a while since i wrote a blog. As I live within the autism world for me it has huge waves of up's and downs and then a sort of surfing flowing. It isn't always about autism that i am unable to write or share, it is being busy in life and allowing myself time to just be.
Since having Jeorge in my life I have become aware, more than ever the importance of looking after myself.
This comes in the obvious way of eating good, healthy, fresh food and exercise and as much sleep as we can get. It is a lot more than that.
Research shows parents and carers of autistic people live within a constant state of heightened stress likened to a solider in combat.
when i first read this i was shocked and automatically dismissed it as a truth for me. I have no idea what a soldier goes through on an emotional level, Of course I can guess but to say I am experiencing the same levels seemed a tad over the top.
Over time and experience with autism I have learnt about my own body and emotional well being. I have become a lot more tuned into my moods, resilience and my weakness points.
Our summer holidays have just begun which I always look forward to. I plan ahead for any new places we could visit. This involves me visiting alone first and checking the place out. I take photos to print off for Jeorge to put on his board. Thankfully Jeorge loves being outside especially near water. As we live in rural Wales we are blessed with plenty of rivers and waterfalls. Lakes and the sea... So the two of us travel around Powys and Ceredigion . We have regular places we visit on a weekly and sometimes fortnightly basis.
However this is also a time for me where I feel slightly isolated from other adults. Getting together with friends for visits is an option. This takes a lot of planning and a lot of patience and flexibility from friends.
Jeorge has his boundaries and what he can feel safe within. This can change without warning and sometimes it cannot be negotiated which has in the past meant we have either had to leave within half an hour of arriving or our group has to split. It would mean expecting the other children to follow us around doing and going where Jeorge needs to go. This is a lot to ask of anyone especially children! It would be great to get together with School friends except this is a very hard concept for Jeorge and his class mates to grasp... Seeing class mates not in a school setting confuses him and causes a great deal of anxiety. I have no problem going on adventures with Jeorge I adore the natural world. Yet honestly sometimes I yearn for adult company and the support and joy that comes from a group of friends and kids going out and sharing a day. As I write this I feel uncomfortable because we always have such a lovely time together, I get to see some beautiful countryside.
I am not Moaning about our lives or am I asking for pity but I am voicing an inner feeling I get from time to time. I am a Mum who does her best and most of the time it is pretty good! So I try not to beat myself up for having moments like this where I needs adult company and support on a day out .. Autism is a unique and fascinating thing to share with Jeorge, mostly it is a joy.. Yet, It can also have times of isolation from the rest of the world. I wonder how many other parents find themselves travelling around with their autistic child alone purely because of their child's needs.
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.
I read an article recently about parents who discuss their child's progress on social media. In particular the progress of a child with a difference, such as autism and Aspergers. As I read down the comments I saw many from those who firmly believe that it is against the child's rights to do so. Disrespectful was a word used quite a lot, selfish and bad parenting! feeding the needs purely of the parent and not of the child. As I myself, do write blogs and articles based on my own experiences with autism and my son I found this a bit of a slap in the face. Support groups are offered and have been all across towns and communities. This is something that can be offered out as a healthy and helpful solution to feelings of isolation and fears regarding a new life situation such as an autism diagnosis. is this deemed as bad parenting too? Parents have a role to play that is constantly juggling the moral codes of boundaries to protect their child first but to also receive support and a shoulder and ear to lean on. When setting up this website and blog I too had these thoughts whizzing around my mind and heart. Am I dishonouring my son by setting all this up? Talking about his autism however positively I do, am I still disrespecting him? asking his permission is a difficulty due to his autism and lack of speech and awareness of what it is I am offering others. Even though I have spoken to him about my website, showing him it on the lap top, he doesn't show much interest in an obvious way. Yet, he does acknowledge what I am doing with dazlious and the workshops I offer. I know it, I feel it intuitively. This is one of the ways in which we communicate.
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 title of this blog is alarming to me. I wrote it, yes in response to many posts I have read with differing views on autism and the effects it has on a family.
It is true autism is so far across a spectrum that it would be almost impossible to see all aspects of it. Although maybe this would be a great idea, a whole bunch of families coming together somehow and showing the diversity within autism. This alone would be a great education for those who do not know and for those who wish to.
My personal view on this subject is to keep autism. My reasons for this are: I feel this is an opportunity for humans to evolve in a way we have perhaps not had the opportunity to do before. reawakening our senses, all of them in full. We generally use a tiny percent of our brains, wouldn't it be wonderful to use all of our brains?
For me this is about so many things. Eradicating something on humanity seems like a mistake, as we live as humans we learn and grow each of individually. Across history there have been and still are so many lives living with pain and anguish. War, poverty, suppression, racism, disabilities the list is long. over history to be different has always caused problems and great fear. The knee jerk reaction is to get rid of it. Then we can all feel better.
But it seemed we never did feel better as something else would come along for us to 'deal with' life gives us opportunities to change, move forward, evolve. Being stuck in the same belief system forever isn't healthy for anyone and actually impossible as change happens, it cannot be controlled. The more we resist change the harder lives can be.
This blog has been inspired by a young man who has a brother Milt (his nick name) who is severely autistic. He posted onto his facebook page a written piece from his heart, please see below this blog post:
This post moved me to tears for a multitude of reasons. Firstly for his courage to write his truth. He adores his brother and has as he says vowed to help make his life as positive as possible. It also moved me that he feels so helpless and cannot see a way out for himself and his brother.
Yes there are many forms of autism and it manifests in a multitude of ways, for Milt it is severe. I feel his pain and fristration as I too have felt it and sometimes still do. To move myself out of the way, meaning my usual thinking and instead replace it with something different can be, at times almost impossible. Bt I am learning more each day to embrace this way of thinking. I do this by exploring my own restrictions and barriers. I do this by listening to others with non verbal autism, with severe difficulties as Milt has, who have chosen to use a communication vice aid. (Jeorge is still yet to engage with this)
Although their lives are still very challenging and outsiders or strangers can cause so much distress by their lack of knowledge or mindset to be compassionate. Now, they have a voice to share why they express themselves the way they do, why they need to stim, what they feel , there is such wisdom within them. I mean real wisdom that all of humanity can benefit from on so many levels.
The world at the moment is mostly geared up for those humans who are all seeing, hearing and fully able, in the 'traditional way' (my words and analogy) But we can change this by listening then learning how to change ourselves, see with a different viewpoint.
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.
I have been watching the A word, which is currently on BBC 1 on a Tuesday evening. For those of you who have not seen it, it is a drama series about a family living in Lancashire. The little boy aged 5 happens to be autistic.
I get when a programme about autism comes on tv, mainly because of my protective nature, seeing the same old stereotypes over and over is incredibly frustrating.
I am 2 episodes in and I am very pleased with what I am seeing. Of course due to the closeness of the subject and the reality of living with autism I have felt emotional watching it. The writer has I think, really gone into the smallest details of family life and how it ripples through to each member. The actors are brilliant, especially the young lad who plays Joe.
There is humour in it, joy and tension. The parents trying to make sense of the diagnosis and to cope with this is the early stages really resonated with me. To put this across on screen as authenticly as they did, I think is brilliant and just.
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.
The lady Ellen Van Gelder who write the book I am not strange I have autism, calles obsessions Zests! I really like that, Zest feels like a happy word a positive word, where obsession is often viewed with a negativity that suggests it isn't of any good or harmful even. Zests, to me means sparkly, full of life, meaningful and useful, happy and certainly nothing to be afraid of.
I have read the book and have decided to share a few quotes and explanations from those featured in the book. Like a taster to share:
Roz Blackburn is an autistic woman who I had the pleasure of listening to a good few years ago. She features in the book, she says that she watched achild's stage play, she noticed the feather falling to the ground and the way the lights shimmered across the stage, she noticed the outfits and the fabric that was worn. She thoroughly enjoyed the whole thing, but didn't have a clue what the play was about. She saw every detail in it's beauty but couldn't put all the bits together to create the whole.
I came across this quote from Laura on Alex Lowery's website. Simple yet completely right in my opinion. Years ago, when all of this was new to me I came to think that high functioning and low functioning diagnosis was down to whether a person is verbal or non-verbal. This was my experience of seeing such diagnosis, it didnt feel right then and it doesnt now. so this quote really rang true with me.
As we currently live in a society governed by tests and results with assesments for 'disabilities as well as abilities in all genres of existence, from school to work to hobbies.. The need for such labels such as high functioning (HFA) and low functioning (LFA) are still present.
As a parent I have been asked this many times, when I say Jeorge has autism, many have automatically asked, 'Is he high or low functioning?' to my amazement. It seemed so rude, imagine if I was introduced to a non-autistic person and asked if they were low or high functioning! It doesn't actually mean anything at all. Well it means someone has assessed a person within a certain criteria of which is set into a number of questions. Scores are added up and bingo, easy, you are HFA or LFA bla, bla. Imagine being told this as a parent or even more so the autistic person?
Ha! what is the 'right thing' exactly? We all have our own ideas about this, on top of that there is the outside/social view of 'the right thing'. The unspoken rules of how we should behave in all areas of our lives. When, Who with, how long for? bla bla.
It seems a crazy way to live as we are all so individual and unique. Yet most of us at some points in our daily lives conform to these unspoken rules. Where do we get them from? I think, for me it was from birth. Rules are created for almost everything. What to eat, and when, breakfast, you can't eat sheperds pie for breakfast! and dont get me started on cereal for dinner! Dancing in a supermarket, to music! are you mad? you dance in a club at a concert, not in a supermarket surely?
I think all of us who have children are temporarily pulled out of such rigid thinking, as children go into the moment without a care or knowledge of such restricting rules. I think most of us really enjoy the freedom and innocence of child's play.
Since Jeorge and autism came into our lives, rules of the so called norm have been challenged and tested on a daily basis. At first I struggled with this as I didnt want us to be centre of anyone's attention. Being pointed at and judged for wrong and inappropriate parenting and behaviour!
As time went by and our days out together became stressful beyond words, I realised the biggest reason for that was I was worrying about what others might think of me and Jeorge. I was expecting Jeorge to conform to the unspoken beliefs and rules of society. Most of which to be honest I thought were ridiculous anyway!
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.
This blog is going to be full of out of the ordinary information, for some of you reading this anyway. Maybe for others who live with autism or live with someone who has autism this read will be like an old friend. My blogs are always from the heart, truthful and real, from my persepctive anyway.
Jeorge has regular connections with a lady named Carol Cumber. ( I will be sharing many stories of such conversations between Jeorge, me and Carol in other posts) Yesterday I listened to their latest 'chat'
I had prior to their chat sent in a list of questions I wanted answered from my 'mum' perspective. Carol usually goes straight to Jeorge, once they agree on a 'time slot' to chat. What Jeorge has to say is prority, then my questions are answered.
My main questions were around food, as his eating habits are far from desirable and I often worry about this. I am sharing this information on food as it could help other parents and teachers understand the hurdles sometimes in the way of our kids eating.
At school, Jeorge says he will not eat in class as there is too much else going on. End of! He loves the cooking they do but cannot eat the food in the class. He went on to describe a 'canteen hall' He said there are double doors leading into this hall, the door on the left has an energy under it that causes huge intense nausea for Jeorge, he gets incredibly giddy and feels very ill. So as he cannot get past that feeling or the door, it seems he doesnt want to go in the canteen. Yet he says he does want to go in, just find him a different way in. He showed Carol a side door, with knives and forks etc, he wants new experiences and will go in via that side door. Now this is yet to be tried out but this information is gold! Non autistics would easily assume it must be the hall, how would we possibly know it is an energy under a door that can cause someone to not be able to pass it. This is another beautiful reminder to me that although 'we' may not be able to 'see' it, does not mean it is not there. Sensitivity is a broad scale from a little to having the ability and skill to see the unseen and feel energies and 'vibes' others cannot see.
This is the part of autism I call the magical side. when it isn't known or understood behaviours and can seem far less than magical! There is always a reason for a behaviour, how ever many times a person repeats a behaviour, the reasons are real. Some we can figure out easily others (like this reason) are almost impossible to fathom..The unexplainable for non-autistic and autistic people, how do the two worlds come to communicate such things?
The complexity of humans, the desire to interact and voice our opinions is as ever strong. Since having Dazlious and finding myself advertising and promoting ourselves on social media I have engaged in many blogs and others Facebook pages and such like.
With this I have seen the many benefits of using this media for the above reasons. I do feel that the positives outweigh the negatives, Personally I have seen people on the autistic spectrum voicing and sharing their vulnerbilities and challenges. As a mum to an autistic child, I find this not only incredible helpful to me personally but also very brave. To show your vulnerabilities is pretty scary, most of us spend a life time hiding or denying them to others for fear of rejection or even ridicule.
Recently I have witnessed someone I know who is on the spectrum sharing their anxieites on their facebook page. He is an adult with autism, lives alone with his beloved dog and has support workers assist him a few hours a week. He used to have almost 3 times the amount of hours of support a week until his hours were reduced in the latest government cuts. This caused great stress for him, not only for the feeling of injustice but also the practical support he now lacked.
A marathon of events have led to more anxiety and stresses for him. He has been kind enough to voice these, I am sure to help himself but to also educate others in the reality of what it can be like for someone with autism.
He has mentioned many times on facebook that he has felt he was bullied by some people,comments were not just disagreeing but abusive and often cruel. This does show a lack of understanding on others but if the bullying comments are constant they can become damaging. I am grateful that he shares his experiences for 2 reasons. As a mum to an autistic child, He inspires me as well as educates me. Also for his human spirit, his detemination and want to help others by allowing his vulnerabiliy to show though his sharing his life challenge and joys.
This blog is all about me learning to ask for help, something I would very rarely do. Funny as in the past it didnt even occur to me to ask for help when it came to parenting. I would chat to people about some difficulties we were having, sharing the joys too, asking for actual help, never.
You see, back then, I felt it was a given that as his mum and professional nursery nurse I should know what to do in every situation! This seems so unreasonable of me to put such pressure on myself, I can see that now.
I have learnt that asking for help gives others an opportunity to learn about autism as well as me getting the help I need.
Communities were how we all lived years gone by. Some of these communities were socially classed based, some on what languages we spoke and religions we practised. Others if we were really lucky (my opinion) would be a mixture of all of the above. A mish mash of languages and skills, expereinces and differences, cor imagine a comminity where everyone was completely different, unique and shone brightly and proudly so all could see? What an amazing commmunity it would be, we could probably find solutions to problems and create amazing things together. The more the merrier!
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?'