Jay and Sensory Processing difficulties

 

 

Recently, Sensory Processing Difficulty has been rearing it’s head again in our house. When Jay was five and six our whole life was run by Sensory Processing Difficulties. Jay cannot process information like Neurotypical people can. He takes time to truly take in each different form of information.

We all take in Sensory information all day long and in many different forms. We hear it, we see it, we feel it , we move in response to it. All our senses are hard at work breaking down this information bit by bit, in order that our brains may make sense of it and know what to do!

Now imagine that all that information is coming at you like a tidal surge! Swimming around up there in your Brain, yet the neurons in your Brain are not making any sense out of the information. Then imagine that all the information is bounding off the walls of the Brain, but without it making any sense as it is all scrambled and messed up. The information has gone in, but it has not been computed in the correct way. Then, the person cannot make sense of it or know what to do.

This is what happens to my Jay. He spends all day just trying to make sense of what information he is taking in. His Brain does not compute and break down the information he takes in, in all forms including what he has been told. This makes things incredibly challenging for him. Some information he learns at school does go in as he is now able to tell me what he has done at School, in a single word. This is a promising step that Jay’s Brain is changing and developing, as a year ago he could not do this.

However, Jay’s ability to deal with the day is again being compromised by Sensory Processing issues. We know this , because of Meltdowns. At the end of every School day, once Jay is home and settled, he will go in to a Sensory Overload or Meltdown. When this happens he is unable to self regulate for a while. A month or so ago, this began happening again after School! It was always at 4pm each night. It had the same trigger, and was frequently challenging, and we began to recognise that Sensory processing Difficulties had returned, after months of Jay managing better after School.

So, recently we had Jay’s Annual Review for his EHCP or Education and Health care Plan.

When we were asked what concerns we had or if any thing had changed, I brought up the return of the nightly Meltdown or Sensory overload. The lady who was chairing the meeting suggested that Jay’s Teacher, allow Jay some “down time” at the end of each School day. I commented that in Jay’s mainstream School they actually did this with him. He would go with his 1 to 1 in to the Sensory garden or Library, for half an hour or so and it gave him the necessary processing time. He needed time to take in what he had learned and all the sensory information he had taken in, and for a long time this worked and prevented such severe meltdowns from coming on after the school day. So, I said immediately lets start doing this again, with Jay being given time at the end of the School day in peace and quiet in the Sensory room at his Special School or the quiet Library.

The result of this is: it has been nearly two weeks since the meeting and Jay has only had two Meltdowns after School -it has changed to one a week from one each night. His lovely Teacher asked me to keep her posted on if this strategy makes a difference to the Meltdowns, and I am happy to keep reporting that it is doing. Actually, yesterday, Jay went swimming at School in the afternoon and I suspect did not get his down time because he came home very anxious and tense, and went straight in to Meltdown, but I suppose there will still be days when it fails or the Sensory overload is too strong for him to handle. It seems to be a very powerful thing. When Parents start on the Autism road, Meltdowns caused by Sensory Processing Difficulties can be very challenging and scary for both Parents and child. Learning about why they happen is the first defence against them. Only when we understand truly what is happening in these kid’s brains, will we be able to help the child to prevent them. De-sensitising the child is first and foremost. We cannot take them to a busy place with noise and people without using ear defenders or earphones, and we must give them time to process what they see and hear. We have used things like dressing Jay in Lycra clothing to help him to feel more calm, we have used a Squeeze Vest which are very good for regulating the nervous system. Unfortunately, Jay is not so keen on his vest.  He has asked for it a few times, but mostly he asks for his Ear defenders. He wears a cap and sunglasses to help him deal with light from the sun especially in Summer. We also stick to quiet places but if we do have to go somewhere busy, we use the Ear Defenders.

If your child is in Mainstream or Special school right now, and they are having these Sensory overloads and Meltdowns after School, consider asking the School to allow them “down time” before home time. This is a ‘reasonable adaption’ which they would legally be required to consider. Any adaption made for a child with Autism, has to reflect the well being of the child, and just because these children suffer daily with Sensory Processing Difficulties does not mean we just accept it and that nothing can change it. It can! Giving the child time to be quiet and still at the end of the day before going home, allows them to process at least some of the day. This can make a difference in the way they go home. Without this time they can get home and suddenly all the information from the day bombards them until they cannot cope and they will go in to an Overload.

In Jay, I have seen this approach make a difference. It does not take Meltdowns away fully, but it does cut them down.

I have talked about the ‘Delayed effect’ lots before but this is really what we are looking at when we discuss the subject of Sensory Processing. The ‘Delayed Effect’ happens when the information taken in to the brain in the day is not processed until a much later time and this results in all the information coming at once, becoming scrambled, and then mashed up. It then can only be dealt with by a massive explosion of emotion which is the response to the Sensory Overload. This leads to Meltdowns. Jay will often process something like a Storm a few days after. He will have a Meltdown then talk about the Storm and that he was scared. He tells me what is upsetting him, and often it is something that has happened hours, days or even weeks ago. This is ‘delayed processing’ and ‘the delayed effect’ then kicks in.

Since Jay had his Annual review and this strategy was implemented, we have seen an improvement in Jay after School. All you can do it try. All children with Autism are different and what works for one may not necessarily work for others. Yet we can only find strategies to help by trying them out. Finding the one that works for your child takes time. It also changes throughout their childhood. What worked for Jay at Four does not work now at Eight.  Jay used to calm to music, now he uses Technology. Oh yes , and talking about his Chickens!!! I quote: “Chickens can be white like Little Egrets”

 

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Bob the chicken

 

 

 

 

Jay and the Chickens.

 

Above: Visiting Chickens, Jay’s Chicken mug and Jay’s Chicken hat.

I cannot believe I have used the word Chicken in a post title yet it is more than relevant in our life right now!

How do Chickens link to Autism? They do not in the normal sense of the word, but in my house, at the present moment, they are the subject of conversation nearly all the day long!

Chickens are incredibly funny creatures, and, to Jay, they signify an incredibly fun obsession which developed about a couple of months ago. Jay has always loved all animals , some more than others. I have already discussed his obsession with Spiders and how his two special toys Spinney and Crawley live their lives with us even though they are, of course toys! But if we try and look at the world through the eyes of the child with Autism, we will see a little of what they see. To neuro typical people, Chickens are just Chickens. Farmland animals bred for eggs and meat and yes they are super funny animals if you watch them for a while. With Jay, there is a special quality about the way he views animals. Just like a toddler will believe an animal can talk or is magical, he sees in to their souls . I believe he sees the animal itself, and imagines a character and a name, and a certain personality to the animal, be it a real one or a toy.

Because of Jay’s interest and obsession with Chickens, our weekends end up being about the pursuit of them! Luckily we live in a country town and there are many farms and small holdings around here. We go to one near us and Jay will laugh , giggle and talk to the Chickens and chatter in excitement and pure happiness! It is a real pleasure to watch Jay engage with them and he also has become quite efficient at discussing Chickens with us which considering Jay was non verbal 3 years ago, this is a huge achievement. The funny thing is that Jay’s obsession does not end with just visiting these animals. His Dad and I have to BE them! What I am about to tell you, shows again what I have discussed about parenting your child with Autism in a different way. When Jay wakes up on a morning and his Dad is the first person he sees, as he gets up before us, Jay will not say hello or Hi, he will say “Chicken” This is his way of asking Dad to make Chicken noises! Yes, my husband’s first job of the day is to be a Chicken. Technically his Dad needs to get ready for work, so he gets up earlier in order to do these rituals Jay needs and the acting like a chicken makes Jay laugh and smile. I believe Jay’s mind jumps straight to his current obsessions or interests when he wakes. Then, when Jay and I get up, instead of saying hi to me, he also asks me to be a Chicken too. I have my own way of being a Chicken! I even have a phrase I say. It is ” cluck cluck what luck!” I will quite happily say this whenever Jay asks me to, as I know it makes him happy and calm. Most parents would say to their child to get ready or eat their breakfast, or we will play later, but Jay’s Dad and I both realise the real reason Jay requires us to act like a Chicken for him, is more serious. It is because he is dealing with high Anxiety every single day, and this Chicken fun is a diversion for him to get out of that crippling Anxiety!

Everything a child with Autism does is geared to how their physiological selves react to the sensory information around them. They are just trying to function, when their bodies are in a constant fright or fight mode. If , as Parents and Cares we understand this and comprehend why these funny things are expected of us and how the child’s rituals run their days, then we can really provide a helpful way for the child to manage their Anxiety daily. If you refuse to do these ritualistic requests then the child will still have the Anxiety, and would not have the diversion they need to manage it.

We laugh with Jay over the habits of Chickens, of course we do, and we make it fun for him. We probably look like idiots but we do it for him. It even happens in public. We recently went to the shoe shop for shoes for Jay, and he began requesting that his Dad did a Chicken impression right there in the shop, surrounded by total strangers and staff. Jay’s Dad did do the impression albeit quietly and discretely. As I have told my readers before, we are way past the time when we cared what people thought of either Jay or us, and the people’s reactions would not bother us , but there is nothing we wont do for him to keep him calm in public and if, in pretending to be a Chicken, we calm him, then we are going to do it!

Obsessions in Autism can be a really fun way in which to make a connection with your child. To study a subject together through books or online can be so rewarding and can result in the child actually connecting on a deeper level with the Parent or Carer. I know there are many times when I feel a slight disconnect in Jay. He switches off from us from time to time. It has happened for all the years I’ve spent caring for him. Sometimes, he is alert and is present and right there in the moment with us, and other times he completely switches off from us, preferring to absorb himself in his own world. This may not sound hard to Parents who do not have children with Autism, but I assure you it is very hard to feel this disconnect. I have learned to respect it. I have become less emotional over the years, and to deal with things in a calm efficient and non emotional way, as that is the only way I stay on my path as a Carer and support network for my son. When Jay fully connects with me I enjoy having those lovely hugs he gives and the eye contact he gives me as we laugh together about Chickens or other interests, but at those times when he seems distant and does not come to us, and when he pulls away from any human contact, I find just a sensible lets get on with it mental attitude works best. Because, he always comes back! He never stays away mentally for long, and if we give him his space at these times, then he tends to return to us quicker.

So, if in pretending to be a Chicken all day long, and the connection between us is there, then it seems a small thing to do to maintain the closeness we have at these times. I would say that being self conscious does not always go well with Autism, as these children do not try to fit in or succumb to “normal required behaviour or social etiquette” so it is best to do exactly the same thing and not succumb and just focus on the child where ever you are and whatever you are doing. Just keep on ploughing on down the road on your path to discovery about the child you love and care for.  There is no doubt that raising a child with Autism and Global Delay changes you in a way that you could never have imagined you could be changed. It gives you strength. It makes you a force to be reckoned with. It makes you learn how to stay calm, because there is no other way to deal with Autism other than to be calm as every other emotion ,makes it all worse. It makes you resilient. It makes you clever. It makes you more accepting. It makes you work harder. It requires you to break the boundaries of human propriety. It requires a certain wisdom only learned on the job. It requires you to work a little harder to connect. It requires an eloquent approach to obtaining the support your child needs, and lastly it requires more love than you ever thought you possessed! But gosh it is worth it! It truly is!

 

 

 

 

Literal, rigid and Analytical Thinking in Autism

 

“I am so hungry I could eat a horse”

Silly expression really yet a widely used one. However, for a person with Autism, this expression would actually be taken literally. They would think you eat horses!

“Sit still its like you have ants in your pants”  It is so important to throw off these expressions and also sarcasm, as children and young people on the Spectrum simply take them in the literal sense of the words. Another words they would be likely to respond in panic thinking they actually have to eat a horse, or that they truly have ants in their pants. You have to be so careful with this. We were told of a story of a teenager in mainstream, who had Autism, and she was asked when she was going to do her work. The Teacher said to her “I want you to do that work and not go to lunch or think of anything but completing it. Then bring it in to me.” So, the girl took the work home, started working on it , and struggling with it took 24hrs to complete the task. The next day she took the work in to the Teacher who asked how long she had worked on it. The girl replied” all night and day. The girl then said” can I go get something to eat now?” The girl had taken the Teacher literally and had not eaten anything for the whole time she was working on it because the Teacher had told her she couldn’t eat her lunch or think of anything until the work was completed.

This story was told to us to warn us about how literally Children on the Autism Spectrum take what you say to them. Everyday sarcasm gets on my nerves anyway, but after learning about how literal people with Autism are, I really saw to it that we as a family stopped saying things that could be taken too literally by Jay. Sometimes my older two will be deep in to their video games and will say something like “oh you’ve killed me” Little things like this that neurotypicals say could be  misconstrued by the person with Autism.  Anything said in sarcasm will not be understood, neither will turn of phrase or saying metaphors. A Teacher or Parent may say ” what a shining star” This is totally confusing to a person with Autism, as stars are in the sky and how can a person be a star? Or they may say “thankyou so much you are an angel” Again the person would hear that they are an angel, and so they will think they are or will be very confused as to why they are being called one.

Language is already incomprehensible to many people on the Spectrum, but throw in sarcasm, wit, metaphors, jokes and phrases and they are lost. To help our Special children with this, it is always best to just say exactly what you mean, in clear concise wording and without turn of phrase. For example to say, ” go in the kitchen and get your shoes on and put on your coat and I will be there in a minute” is confusing.  Not only is this a massive sentence to process, it also ends in a promise that the Parent will be there in precisely one minute. The child may become distressed because they have no idea what a minute is. It is a turn of phrase. Instead, you could say  “Please put shoes on. When I have put this away I will help you.” Put the item away and then go and help them. Say what you mean with a clear instruction with a time frame they understand. With Jay, I am now able to give a five minute warning whenever it is time to go or to do another thing. Instead of just saying “in five minutes,” I show Jay five fingers to show what I mean. He may not be able to count down five minutes, but the connecting of five visually to the time frame helps him to compute that a change will happen in a time frame.  If I was to suddenly announce to Jay without a warning that it was story time, or it was time to go home from somewhere he is enjoying, he would panic and go in to a Meltdown, and this has happened a lot to us. I always have to give the warning for any transition in his day, no matter where we are. When I give instructions to Jay, I think of what I am about to say in my head first, to make sure it is clear, basic, computable, and processable to Jay.

One day when it was hot, I said ” its so hot I could melt” After saying this Jay was stressed. He then ran inside and shouted “I will melt” He had taken me literally. I asked him if I could pop some sun cream on last Summer. He said that I could and I proceeded to. I said ” we must wear sun cream as we will burn if we don’t”  I thought nothing of it. This was a few Summers back, and later on that Summer I had noticed that Jay did not want to go out at all. I said ” shall we go and play outside?” He shouted back “no” and cried. Then out of the blue he put his hand on his skin and said “its going to burn me”  He had been genuinely afraid that his skin would burn but like when the dinner gets burnt or food I had burnt and he thinks it is dirty. He had again taken what I said in the literal way. He was visibly anxious and scared that the Sun would burn him. So much that he would not go out in it. Of course I then explained in simple terms that it means your skin will go red and sore so we put on cream to help it stay white. This was a clear factual message as to what his skin would do if the sun caught it and a clear message about what the cream would do to help stop it going red. Sticking to absolute , literal facts is best, however we all use phrases and expressions naturally in our daily lives, and so it is a case of really thinking it through first, and changing the way you speak to the child or young person. Humour is also hard to grasp for people with Autism, and this is yet another barrier to social interaction and makes life difficult for them.

Jay lives his life literally, rigidly and analytically. The structure he requires to his day is what makes his world make sense to him. Going to his mainstream School and trying to follow the endless rules and expectations was too hard for him. Even in his Special School, he has to regularly process all the information, conversations and instructions and he normally does this at the end of the day, which regularly produces a Sensory overload which leads to Meltdown. Language is so complex to him, yet it will all be there swimming around his head just waiting to be computed. This tires him greatly and can cause him to withdraw, where he will switch off from us and immerse himself in his own world of play and structure and routine. Even this world is literal and absolute and analytical. His play is very structured and we are not allowed to move anything. I tend to create art activities to do with Jay because they are again clear and concise. To create a story and game with small world toys takes imagination, and because Jay is literal, he tends to copy or mimic stories from what he watches on television or films or reads in books. He will watch a film and follow the story using his teddies and then mimic that story. So, if I was to join in and change the story it would move away from his interpretation of the story, confusing him and stressing him. With children with Jay’s type of Autism, it is best to be close by and to observe them . This way they are in control, but you feel you are involved.

Because Jay’s brain is literally minded, he prefers non-fiction books and lots and lots of facts! He will read stories at bedtime, but prefers factual books in the daytime. He likes to read things that are true and things that are predictable and sequenced. His hobbies and interests reflect this. Space has Planets which are in sequence. Animals and Insects are predictable too. The life cycles of Frogs and Dragonflies, Moths and Butterflies are all predictable natural rhythms in life, and he loves to look at these over and over again, maybe just to make sure they are the same each time. They are unchanging  and stay the same. The Sun will always rise and set. The Moon will rise and set. Winter will change to Spring, Summer to Autumn, all of this has a predictable outcome. Jay gets stressed about the Weather, because it is not absolute. It can change and unpredictably and so he is weary of it. His literal mind feels calm with anything that he can predict or is non-changing. Anything that is changeable is scary to him, and it lies in the fact that his brain is wired differently to accept only that which is easy and predictable. His brain has an analytical and rigid way of processing the world around him and this includes our language, and how we explain things to him.

Jay knows when he needs space from people. He will just say it. He will say ” go away” he will say “shoo.” Learning to not respond to this with the usual reaction Parents give is something that takes experience and understanding. They are not trying to be rude. They are just being Literal. They need space, so they say so. A child with Autism will say it how it is. They have absolutely no idea that they are offending anyone. They do not tap in to your emotion at these moments, only their own. Yes, they are capable of empathy but it is on their terms when they give it. Jay will notice if a character in his programmes has been hurt or upset,  and he will react with sympathy, yet he will not think twice about telling me he requires my absence rather than my presence, in those moments of over load when he knows that he needs peace, quiet and solitude in order to recover and regroup. This is fine by me. Because I understand Jay and his needs. I have learnt to never get emotional about it. There is no point in becoming hurt or emotional because your child with Autism has told you to go and leave them be. They are simply expressing that they cannot compute or process anymore at that moment and that this is all they are capable of in that time. Jay always comes to me when he has had some time and often will hug me or ask me for a drink, and I just respond in a normal voice saying of course you can. Learning to parent the child with Autism in a non-emotional way is the only way to deal with moments when they hit out or shout or say they don’t want you near them. I am not saying show no emotion because that is needed in order for them to understand their own responses, I am simply saying that in the harder moments its best not to react and just say ” okay I am just in the kitchen if you need me. ” It really does work. Even if you do feel hurt, maybe acknowledge that emotion but don’t allow it to take over you. They are being literal. They are simply telling the truth. As I have said before the rules of society rarely matter to children with Autism. They are too busy trying frantically to process what is expected of them and maybe constantly panicking if they are doing it right. They do not need the added pressure of ‘Social Etiquette’ on top of that, because they do not see the sense in it as their brains are rigid and analytical and literal. Jay sees the world through his own agenda and not mine. Constantly fighting against this natural developmentally different brain is completely pointless because we cannot change it. Their brains are wired this way. We have to find ways of working with this not against it!  All they need is our support, understanding and love.

 

Above -Jay with his rigid and sequenced way of playing.

The Changing Attitudes towards Autism over Time.

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Jay at 2 before I knew anything was different about my boy! Different, not less!

Autism has been around for all time, yet it has taken until this last decade for it to be really understood and even accepted by the Professionals.

We hear from many uneducated people saying that it was not around in their day. Yes it was! It was just not understood. I remember children I went to school with, who I thought were just behind and slow, when actually ,they are now, grown up to be 40 year olds who quite obviously have Autism! I can think of at least 4 people who come in to this category.

Many years ago, Autism as we know it, was completely undiscovered.  The research was obviously being done by some, as it was discussed as being “retarded” or being “handicapped”. Both are horrid words, no longer acceptable in our society, yet they were used to describe Autistic individuals in the past. Thinking about it, no word used to describe any one with difficulties is actually nice. If you actually break down the word ‘Disabled’ you get : Dis – abled. This means to disable-which actually renders an object unusable or broken. Another word used to describe people with difficulties is Invalid. Let’s disentangle this word, ‘In-valid’  That is even worse because it means something is not usable or needed! Awful! I think I prefer Disability and learning difficulty and Special Needs.  At least these words cannot be split to create an insult!

In the 50’s and 60’s, the phrase ‘Refrigerator Mums’ was coined as a way of labeling these children and suggesting that Autism was caused by a lack of affection and secure attachment of the Mum to the child! Again, this is incredibly upsetting and perhaps was a phrase created by a man! If all else fails blame the Mum. NOT the Dad, the Mum! This got me thinking about the Duchess of Devonshire, who could not birth a male heir for the Duke of Devonshire. Instead of blaming the Duke, everyone said it was the Duchess’s fault she could not produce an heir. We all of course know now that it is the male who determines the gender of a baby! Why must we women be blamed, and having said that why does anyone need to be blamed? What an attitude and I am so glad I did not live in the 50’s or my Jay born in the 50’s as he would not have got any help and I would have been blamed for his condition!

Then we look further back to 1944 when Hans Asperger, described 4 children in his care of having difficulty in coping socially and with communication, and how this man coined the Diagnosis of Asperger’s Syndrome. At this time it was seen as a condition only, now it is seen by many as a great gift as People with Asperger’s often are very special,gifted and high performing individuals!

However we must be very careful, as in today’s media, we often see only HighFunctioning and Asperger’s being represented, and this can lead to an incorrect assumption that ALL Autistic People can do well and achieve and work etc when those with very severe conditions such as Jay, cannot work or be independent. They can, of course achieve and are gifted in sometimes bizarre and special ways, however it is understood that they will need caring for their whole life. On the other hand, it is important to understand that those of High- Functioning Autism, and Asperger’s can also really struggle in the world and often need just as much support as the Low end. No assumptions should ever be made in relation to the severity of all three of these types of Autism.

In the 80’s the movie Rainman did a lot to aid understanding of Autism.  The extreme cleverness shown by the main character, helped people to see how these people’s brains were so advanced and developed, even though their development was so delayed. My son Jay has shown these traits at times. For example, when the main character with Autism, counts the toothpicks that have been dropped on the floor, knowing immediately how many there were, this is something that we witnessed in Jay one day when we were eating tea in our kitchen. Jay had been sitting near the Now and Next board we use and on it are lots of pictures of every day events and tasks. One of them fell off and Jay looked up, and said “59.” I asked him what he meant, and he said it again. “59” I then looked at the board and I counted the cards. There were 60 on the board, and one had dropped off! I realized that he knew how many were there without counting them out loud! Jay also began to count in 3’s 4’s 5’s and 6’s before he had been taught this at School. The teachers were amazed as they had only began to count to 20, and already, after a week in Reception, Jay could count in all these numbers up to 100 and back down to 0. This is a different level to Rain man but a similar thing, in that these Maths skills in Jay were not in line with is his Global Development Delay. Rain man is often the most obvious connection people tend to have with Autism. I have actually heard people say it. It is not a bad thing, but as I said before, the danger with Autism is because its a spectrum condition, one cannot presume to label all people with it in one way. Not all High-Functioning People have the same skills as Rain man, and not all Globally Delayed Low-Functioning People show no skills or gifts. There is not a one size fits all with Autism, and this we are sure about!

Recently I read a lot about a certain celebrity with Autism, and how she had certain skills and over-came difficulties caused by Autism, to socially integrate in the jungle with others. However, the same attitudes were filtering through the online discussion, and that is if SHE can do it why not others with Autism?Here we have the difficulty and danger once again, that if people see one type of Autism, then they believe to know it all and judge all Autistic people the same way! Surely, if Autism is to be in the media it should be clearly represented from all types?

Pathological Demand Avoidance and Attention deficit Disorder- PDA a sub-type of Autism first discovered in the 80′ s by a Professor, who noticed different traits in certain children, who showed an over-whelming need to avoid and resist demands. PDA is now acknowledged, and some Professionals are aware of it, but many Teachers have never even heard of this form of Autism, and only in special Schools is it understood. I know Parents of children with Attention Deficit Disorder who are constantly dealing with degrading and irresponsible, and at times ,rude comments from the public who generally believe that the children displaying this condition are just plain ‘naughty’ and that its lack of discipline, or bad parenting.  These attitudes are so damaging to both the children and their parents, and can lead to feelings of low self worth, and loneliness and isolation. This is another condition that is not widely understood in Schools too, and along with PDA and all forms of Autism, a long road lies ahead before we have full understanding and acceptance of these complex and varying conditions that all link to the Autistic Spectrum.

Even though we have come a long long way since the days of Refrigerator Mums and Mental Institutions in this country, there is still a lot to be done, before our Special children have full acceptance and understanding and also the support network they need in which to truly flourish and grow. I do believe that, after being warned that Jay may never read ,write or talk, only to find Jay is now reading , writing and attempting language , that it proves that we should never just ‘accept’ our children’s supposed fate, without first showing faith that we have the power to change their fate. We do this by offering the best support we can, fighting for their right to a full proper education, and being their teacher and voice in the world they must move along and achieve in! We have the power to choose! We can sit back and say oh well they cant do it, or we can show them that they absolutely CAN do it with some help and support and a lot of love from their family. Because if we do not believe in them how can we expect them to believe in themselves or see others believe in them?

With all the support we have , I am relieved we live in these times, yet i find myself wondering how things will be in say twenty years time? Let us hope things will have again moved on .That awareness is much greater, and relates to the actual people of this world with Autism in any form, and that those individuals will be honoured, valued and supported to meet their full potential always! Not just left on the shelf, because the way things are at the moment in Education for Special Needs it is abysmal, with no understanding from staff and children left without education because not one staff member knows anything about the condition they have! That has got to change and hopefully in the near future not in twenty years.

Jay continues to be well cared for in his Special School and is fully supported by us and also by our team of Respite Workers, and so Jay is lucky and I realise this. Would it not be the desired outcome of ALL children with Special Needs to have this same network where ever they are?

Yes! We have a long road ahead!

Jay with one of his number charts to add and subtract. Jay in his fun chicken hat

 

Next time:  Literal, rigid and analytical thinking in Autism.

 

 

 

Autism and Phobias.

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As we are all aware, Phobias in children and adults are fairly common.

I have at least four, I wont share them but they impact me a lot.

The Phobias that go with Autism though, are somewhat different. You may ask how?

Jay’s Phobias are forever changing although some remain constant. So, what Phobias does Jay have and how are they different from Neurotypicals?

To begin with, I need to explain that it is widely recognised that children and adults on the Spectrum have phobias that relate to their physiological state and their rituals and routines and lastly their Sensory System! Normal Phobias may start because of an event or  a situation one finds themselves in, and that will cause a Phobia to commence. With Jay, we have seen Phobias that are somewhat bizarre to other people. His first Phobia at five years old was with the sky and the weather. He was terrified of changes in the sky. If clouds moved and blew across the sky, he would go into fiercely distressing Meltdowns that would last for hours. He was scared of the weather and the rain, grey sky and dark clouds, and he would constantly scream and cry whenever the sun went behind a cloud. He would shut himself inside with every door and window shut, because he was afraid of the sky or the clouds. At School, he would watch the weather out of the classroom windows and scream and cry if it began to rain. His teachers would have to reassure him that the rain was good, and that we need the rain for “water to drink” I began to say this each time Jay went into a Meltdown over the weather and I kept the phrase consistent, and to some degree it did calm him. Here is an obvious difference already. I have yet to meet a Neurotypical person who has a Phobia of moving clouds, so severe that it causes them to shutdown and be incapable of regulating.

Weather and the sky, remains one of Jay’s worse triggers for Phobia and reactions to it have run our lives for over three years.

To help Jay, we provided a Weather chart and bought books about the weather, to help him to process what the weather means and why it must rain and why the clouds move. Here is a photo of Jay with his Teddies who calm him, and a book we use, and of Jay using his chart in a moment of Anxiety and in this case he did self-regulate! He also , in the second photo, is using his pictures of the weather which I drew for him, to ease his Anxiety over a day of changeable weather patterns.

oznor  Jay and his teddies.

 

Jay’s calming strategies.

By using these aids, Jay is now able to de-sensitise and calm down about bad weather, and this is something I recommend you buy, if like Jay, your child has Weather Anxieties and Phobias linked to Autism. With Jay, his understanding is around 2-3years and so it has always been a challenge to help him to understand the world around him. We use visible aids, as it reinforces the language we use and aids his understanding on life and his world.

For the last two Summers Jay has had a Phobia of Bees , Wasps and Flies, and again people may say so have a lot of people. This is true. However the challenge with Autistic Phobias, lies in the severe reactions, not the Phobia itself! When Jay sees a flying Insect near him, the sudden noise immediately affects him and he will suddenly make as to run away, whilst screaming and shouting! The Insect has entered his personal space you see! He will then go into a Meltdown, where he cannot see reason, and cannot be calmed, neither can he self calm. The severity of this particular Phobia, means Jay is restricting his life. He will not go outside in our garden, because he knows there are Bees there. He will order every window and door shut, and if we open them he screams and shouts to close it, and the terrified look on his face tells us he very, very scared and he is not able to reason with himself. His reactions are wild and sudden, and if we are not prepared for them, they would catch us off guard. This is why , whenever we leave the house, we fasten a Backpack with a wrist strap attached onto Jay and so we are able to prevent him from running away into a road or other danger, in a moment of panic when the Phobias it him. When he was young and was doing this when the sky changed or the weather patterns were unstable, he would stay in Meltdown for hours and sometimes all day, but now he generally takes less time to calm, but the reactions are still just as severe! There is an important safety factor here and that is why as his Carer I have to be one step ahead always! The Phobia of Bees and Flies, this summer , meant that whenever Jay went out on trips with his Respite Carers, the staff had to keep all windows closed on the bus, as Jay had a particularly severe meltdown on a trip with them, when a Bee had flown near him whilst waiting to board the bus! The Meltdown lasted the whole way home. I have had meetings with Jay’s Care manager more than once to discuss methods of coping with these Phobias and strategies to handle them. I always say, that I would rather a staff member restrain Jay in the appropriate and trained way they do, than he run into the path of a car! It is that serious. I was with jay in a café recently with his Dad, and he saw a Wasp! One moment I was paying for our drinks, the next my son had dropped to the floor screaming and pulling away from me hard and shouting, and all in front of staff and customers. I immediately gave Jay to his Dad, asking him to take him out, and I turned to the staff serving me and said Sorry about that, and they replied not to worry. Jay then went in to the toilets with Dad and proceeded in to another Meltdown over the Hand dryers. Another trigger is noise. Hoovers, hair dryers, hand dryers, and lawn mowers all set jay off into Meltdown! These Phobias and reactions seriously debilitate Jay and also run our life, and every year that goes by, more and more of these Phobias develop.

Recently Jay has begun to use OCD to manage the Anxiety he feels. Rituals also help him to stay calm. The most recent one being to do with a picture I made Jay of frogspawn which I added ‘googly eyes’ to, in order to create a 3D effect. Jay began asking me to touch it. He would bring it to me and say “mummy touch the frogspawn” I would then touch it with my middle finger and say “ooh”  This is what we call in the Autism world, a ritual. Linked to OCD, Jay requires me to do these rituals over and over. He asked me yesterday to touch the frogspawn about 30 times throughout the day.

rpt

It would appear that Jay is asking me to see my reaction, but I do not think it is that. I believe he is using this to help ease his Anxiety about Bees. He askes me to touch this piece of paper, and then he calms down. I have seen this ritualistic behaviour from him many times. He asks me to draw Caterpillars and Butterflies and also weather pictures over and over again, many times, and it always goes alongside obvious Anxiety and Meltdowns. Jay uses these calming techniques to self-regulate, and it is a constant tiring thing to have to repeat yourself over and over again! It takes patience, and a calmness of mind , a strength of mind too, to acquiesce to these repetitive rituals, without losing your own patience. If I did not do these things for Jay, then we would see more Meltdowns and more visible Anxiety, and that would stress him and distress his mind more and I could not do that to him. He cannot help any of this. It is Autism that drives these things and to understand Autism, is to gain the vital knowledge and understanding required to support and also to prevent certain behaviours from forming and to support the child when they do!

It is a very hard thing to see your child so frightened of the world! As many of you know, Jay is a happy, smiling and cheerful child whenever there are no triggers to set off his Phobias. The times I have got beautiful photos of him, are the special calm moments we treasure, but there is a dark side to Autism, and this is it! It links closely to OCD, Sensory processing Disorder, Anxiety and Rituals and a lack of understanding of the world. The challenges these children face, just to be able to turn up to life and live is colossal and completely stressful for the child and the Carer. Quite honestly, I will admit that I find it very hard to handle, yet I never ever show Jay that. It would be no use to him at all, if I reacted in a way that told him clearly that he was stressing me! Again, it takes a strength I never knew I had until I had Jay, to cope with and support a young person with Autism and all its challenges. Let us remember that even though these children often cannot talk or carry a conversation, they are completely quite able to know that you, their Carer and Parent are stressed with them, and that hurts them more than any Phobia! They need to know that you are on their side, that you have their back, and that your love is unconditional, and given freely, and that they do not have to behave a certain way to attain your love and support! To put ourselves in to their shoes is to realise that whilst they have all these challenges, the person they are requires acceptance and understanding as their Autism is a part of their make up ,a and so cannot be suppressed, and why should it be?

I just need to see this happy face to realise that whatever I have to do to attain this look of happiness in Jay, I will do, without complaint, and without showing Jay how tiresome the repeating of everything is!  He needs it to feel calm and happy and so I am going to do it!!!!

 

 

Next time: The Changing Attitudes to Autism over Time!

 

 

Autism and the Natural World.

Our Natural Environment!

When I think of the word natural, I think of Nature and the Countryside. That is because this is our family’s ‘natural environment’, and this is where Jay truly belongs!

We are extremely fortunate to live where we live. Trees and open countryside surround us, and thus, that is the world in which Jay has been raised and therefore it is natural for him to thrive in it. Before I knew Jay was on the Spectrum, and long before I knew of his Global Delay, he had an attachment to all things natural from the very beginning. As a baby, he would sit in his pram looking up at the world around him, smiling and cooing and making the average noise a baby does. Yet, there was a delight and pleasure in his expressions, that I now associate with his Autism, and what I now see each time he is let loose on this environment. I realise that even as a toddler, his fascination and wonder at his world was obvious. He noticed things. Small details other people may well miss! The way a spider’s web looks on a rainy day. Frost engrained on a leaf. Intricate detail on a Butterfly’s wing. Differences in the sky pattern in clouds, and the feel of the dirt on his finger tips! Looking closely at the way a caterpillar moved, and creating that movement himself. Drawing expressions on pictures of Natural things such as the Sun and Clouds. Painting a Desert scene after feeling too hot in summer! All these things told me how closely Jay was learning from, and using his Environment to further his interests and to calm his being and to make sense of the world!

It started with the sun. His pleasure at seeing it went beyond that which is normal, and his obsession with it became more and more obvious as time went on and Jay grew. From year to year, I discovered just how much it means to him. When he began to communicate through feelings and emotions, he linked those to the sun and rain. Yet even though he feels sad when it rains, he also loves to be near by and in water.

The natural elements of our world exist alongside us, and for those fortunate enough to look for them and engulf themselves in the wonder of them,  those people are blessed and that is what I realised Jay was doing! He was immersing himself in his environment, feeling it, exploring it, watching it with all 7 senses, whilst feeling the wonder and joy of the natural world to which he so obviously feels an intense connection to.

Autism comes with many mental health issues! Anxiety, Obsessional Compulsive Disorder, Meltdowns, lack of regulation, Phobias, inability to stay calm or calm oneself and panic on social situations, people, and all the demands that we the neurotypicals take for granted.

Many experts believe that the natural world can aid healing, calm minds and at times, treat all of the above! I personally agree, as I have turned to nature many times when I have felt stressed or anxious, and I always have shared this with all 3 of my children. But with Jay, it is different, as he is not aware of the benefits! He merely feels them! He cannot identify with the healing ability or know that he is out in the countryside for healing. I just have to look at his face when he is out, to know that it is beneficial to his mental health.

This is a photo taken of Jay at three and a half and he was sitting amongst Harebells in the moorland near our home. Before this walk, Jay had been in Meltdown all morning. Just look at his happy face and the calm way he is laughing with pleasure at being in the natural place he loves! The next photo shows Jay calmly watering our plants. Again, I had given this activity to him to calm him down.

 

Many people are aware of this power in nature that we have to calm and heal our minds. Jay is not aware and so it is more meaningful and more than enough proof that we need it , to realise that it is very real and very important! So many children, even neurotypicals are missing out on this side of human nature. We need nature! We need to be one with Mother Earth! We need to feel the sun and the light, and the rain and the earth beneath our feet, to stay sane and comfortable in this world. Simply watching the Stars and the Moon, can alleviate pressure and Anxiety and can quieten our souls and minds. Jay uses his natural environment to self-regulate and to calm, without appearing to do so. He does not realise or understand that this is what he needs, he simply engages with the world around him, in a simple and very beautiful way. This can be learned behaviour in children who do not have Autism. Indeed my own older two loved nature because I do. However Jay has not the ability cognitively to work this out. He acts in a spiritual way and appears to be completely in tune with the easy and predictable rhythm of the Natural world! Jay is aware of the surroundings and the places he goes, without seeking them out or deliberately saying he would like to go there because it makes him feel calm. He has no understanding of that! All he knows, is he is part of the nature around him, and he belongs there because he accepts it’s benefits with ease and without vanity or expectance. The healing that Nature gives to him is free but Jay does not have to ask for it, or does not take from it, he simply lets it fill him up and then, he has achieved the physiological benefit and becomes calm again.

I can derive from this, that Jay needs access to the Natural World, and I can give that to him where we live. Anybody can find a piece of Nature, even if you live in a city. Go to the parks, look at Butterflies on a garden shrub, or look to the sky for Birds. Look at trees in parks and look at what nature is there, and most of all, try and see the Sun and the Moon, and if possible the Stars. The predictability of these things, and the natural rhythm and sequencing of them, all help calm angry, hurt and anxious minds if only the opportunity is there. Just like Jay, these children will not need to be aware of the benefits, they will simply engage in the elements and feel refreshed at least for a while afterwards.

Being with Jay in the outside world can be thwart with difficulty some days. His Phobias are there and things like Bees and Flies and hard Weather can have the opposite effect on him, but this is a different subject because Phobias change the score. This is because, if they happen outdoors, then the benefit the child feels will be temporarily lost. If Jay has a scare whilst out, then we have to go back to the drawing board by going home from where it happened, and begin calming at home. It is just the way it is. If the Anxiety starts at home, then the Natural world will heal Jay, however if any Anxiety leading to Phobia happens out doors then the feelings will engulf. Once calm Jay can then return to a natural place, and the elements will then have the same effect and calm him again. It is a constant round of Meltdown to calm to Meltdown to calm etc until the day is done .

Speaking about Jay’s Phobias and how we help him through them will be the main subject of my next Blog post, and for now I leave you with some more Natural photos of Jay at his very calmest and at one with Mother Nature.

 

 

Next Time : Autism and Phobias

 

 

 

Reacting to Autism.

 

To my family and I, the face in the photo above, is the sweetest, most lovely little face we know!

Question: How can this face provoke so many diverse reactions?

From the very beginning of our Autism journey, we have had to deal with people’s reactions to Jay and his Autism.

I speak of this situation, because it is one of the hardest things to learn to cope with.

When you first hear the words ” your child has autism” you have to process this and it can take months to accept it and to stop reacting to it. The first reaction is shock. Then you feel relief that you were not imagining it. Next comes grief. Yes you heard me right! There is a feeling of grief there. It may not be the same grief as losing a person you love, but it is still grief. The knowledge that your child will never be ‘normal’ and will never grow up is a huge deal. For people like us who receive the Low Functioning Diagnosis it means the child will always need caring for, which means basically your life as you know it has completely changed and will never be the same again!

These reactions are perfectly normal and it is perfectly acceptable for you to grieve the child you thought you would have and to finally gain the last emotion, which is acceptance. The time frame required for this last emotion is subjective in that it is different for everyone and completely depends on personal circumstance. Some, take it in their stride, some go in to a period of low mood whilst they feel cheated of a regular right to bring up a child to adulthood. Others feel sad and many feel anxious! It is a huge under taking and is never without questions! Questions such as, what will happen after I am gone? Where will they go to school? How will I cope with meltdowns? How will I manage my job? The list goes on!

However, at the same time Parents are going through these emotions and adjusting to life with a child with a severe Disability, there is another pressing problem on our hands.  That is, how are we to deal with other people’s reactions to Autism and our child?

When Jay was very young, I already noticed people’s reactions to him. They would stare when he was screaming in his pram at four years old. They would stare because he was still in a pram at four. One lady said, as I passed by her, ” what’s he doing in a pram he is far too old and big” In the early days I had not the strength or the boldness to speak out. I just felt down every time we went out, because I could not defend us but neither could I get the stares and comments from my mind. I was not yet strong enough to cope with other people’s reactions. As Jay turned five and was diagnosed, I began to come to terms with the emotion that is grief. It came from many months of feeling isolated and alone. It came from Jay not progressing in any way and of Jay having no language. Panic set in that he may never speak. I was anxious as I watched closely for any sign of development. I also became much more educated on the subject of Autism and of Global Delay, therefore became more knowledgeable. This gave me more strength to speak out and get Jay’s needs met, both in School, and in our own life.

People’s reactions to my Jay were at times so obvious it bordered on rudeness. One day I had taken Jay to my work and was walking him up to his School on a morning. I had left his Ear Defenders at my work by mistake. As we passed by a shop, Jay began to stim. He was flapping his arms fast, and making noises. He was perfectly happy in his own way. A lady, who was opening her shop, stopped when she heard Jay, turned around to us and looked at him. She then scrunched up her nose in a direct rude way , sneered and stared!!! OOh I can tell you all, this was the turning point for me. I got brave! I had had enough- I was only human after all. I turned and stopped and looked her directly in the eyes, and said ” Would you mind not staring at my son. He has Autism.” I then gave her an icy glare and went on my way. The thing is, I still questioned myself about whether I was rude, but then I realised that I was actually responding to HER rudeness in staring and sneering at Jay. Therefore I was defending his right to walk about his home town without being ridiculed and stared at and judged. From that moment my Husband and I decided that we would always respond if someone stared at Jay or made rude remarks or sneers. We always said the exact same thing. ” please will you not stare at my child.” Simple , straight to the point and also shaming them to realise they are being offensive. It is not about being rude, or having a complex. These stares and comments are real and they hurt! They hurt Jay, who cannot defend himself and they hurt us because we love him. I believe that gives us more than enough reason to respond to these people!

We were in a café with Jay one Saturday, and Jay was making noises and stimming and he also was anxious and was close to a Meltdown. WE responded like we always do to Jay and we were helping him calm , when my Husband said quietly ” we have an audience.” I looked up and saw two people staring at Jay and pulling that same distasteful face. I ignored them and continued to support Jay and he calmed. We then got up to leave and Jay began to Stim and again flap and make noises. Once more the people looked up and stared again!! Why? Why would any one half decent do that to a person with Special needs? I just know that I would not dream of staring at and judging a family struggling with a child or grown up with Autism or any Disability. Maybe I am just a more kind person?

As we left I was so proud of Jay’s Dad who for the first time ever, turned to the couple and said “please stop staring at my son he has Autism” This had become our planned response. We were not doing this for any satisfaction of our own. We do this in order to enable Jay the right to not be stared at and ridiculed. The only way to stop bad reactions and disrespectful people, is to draw them out and pull them up, so that hopefully next time they will remember and not stare and make comments. Of course this is always done in a calm controlled manner. I will not lower myself to react angrily or in a uncontrolled manner. So, I always say it in a quiet calm voice, but the words penetrate the people’s minds and will go in!

Some people who read this , who are not Parents or family to a child with Autism, will tell me to just ignore them. Yes I could do that, but then they will continue to make people feel awful and isolated and this can lead to serious withdrawal  from the world, Depression and Anxiety and loneliness. This then directly affects both parents and child. Why should people get away with making SEND Parents and children feel like that? It needs to be said, however, what I have now learned to do is to completely block them out once it has been said. Another words, I do not dwell on it anymore and question it. I simply say the agreed sentence and forget it. Why do I do that? Because, my peace of mind is worth a thousand times more than those people who are so unkind as to comment on and stare and sneer at children with Special Needs, that is why!! If you do not have a child with SEND and are reading this thinking I am making a big deal of it, I assure you this is a very real and very sad problem, experienced only by those whose child is different. I know that everyone who reads this who has a child with SEND will completely have experienced this prejudiced and probably more than once.

This post is about the way society reacts to Autism, and how we , the Parents react. For that, I have to be honest and truthful and I am being honest when I say that other people’s reactions to our children is one of the hardest crosses to bear and it never goes away! Even when your child needs medical or dental care it is a problem. I have had Doctors who completely disregard what I tell them about Jay, and try to force him to do what they want him to, and I have had Doctors who completely get it and understand. I recently have asked my child’s Paediatrician to make us a referral to a Specialist Dentist, because the fantastic Dentist Jay had, has left the Practice. If you have an emergency, and have to got to A&E, if you do not see a Doctor who understands Autism, it will be a hard stressful situation and you will find yourself having to explain what they can and cannot do and how they talk to them too. Some Professionals just cannot be bothered with Autism and just want to get the job done and they do not care how they do it. The same can be said for Teachers. You get the Teachers who are wonderful and completely make every effort to understand Autism and the child’s needs, and then you get teachers who do not care a jot about it and to them your child is a menace and a trouble maker and they refuse to help. We all have experienced prejudices from the world around us, everywhere we go, and in everything we do.  Prejudice towards Disabled people is a serious problem now, yet training ourselves to not let the feeling in is where we find our strength!

“No one can make you feel inferior without your consent” This is a famous Quotation from a very wise woman and it is so true.

If we allow these people to get to us, they are winning, and in all account this amounts to bullying.  That is something I will not tolerate towards my child so I will defend his right to a peaceful existence where he can be himself and not be ridiculed for this. That is a fight worth fighting!

Reacting to Autism! Let’s all have strength to strive for a world where difference is celebrated and embraced instead of censured and isolated. That is a world to be proud of.

 

Jay and I – I am his voice and his light and he is my strength and my light!

 

Next Time: Autism and the Natural World