Jay and the Magnets, Diesels, and living with Pica and Sensory issues.

The best part about having a child with Autism, has got to be the interests and obsessions they have. In the nine years Jay has been in our lives, I have found out so much about so many different things he has been interested in. These interests are unique in a child with Autism, in that they take over every thing and the child becomes fixated and obsessed with that one special interest. Often to the exclusion of everything else. The child focuses and concentrates for often hours at a time, often forgetting to eat, sleep or go to the toliet, as they actively learn all they can about their chosen subject.

For Jay, at the moment, his special interest is Magnetism and Hydraulics. Diesel trains are high on the list of interest, with Jay finding out all he can on them and how they work. Jay was delighted to discover that there are magnetic trains out there called Maglevs and he incorporates all he discovers in his play. The type of Autism Jay has means he has significant delays yet he can learn as much as he can read about things that spark his interests. He reads up on these things, yet in his play he will play like a two year old or three year old would. He recently began to collect toy Diesel trains and would give them names and characters, and would ask me over and over again to tell him stories about each character. Jay watches online videos of Diesels and will talk at length about the parts of the trains. He loves to use the word Hydraulic and Magnetic and discusses it with me all day.

So, as I always do, I began to think of ways I could bring this interest to life for Jay and also teach him the Science behind these words. So, I asked my neighbour and friend, if he had a real magnet, which he did. We brought it to Jay to show him how it worked. We used a wooden board and put the magnet under it. We then asked Jay to put his Die cast metal train on the board and watch what happens. The train moved around the board as if by magic, as the magnet did its job and Jay was fascinated and thrilled. I explained that this was happening because the train is made of metal and the magnet was making it move because the of the metal it was made of. We then let Jay experiment with the Magnet keeping an eye on him for safety as his understanding is at three years old developmentally. I took some photos of Jay experimenting with the Magnet as he made the connection with the metal, and chose to put the Magnet on his crane and pick up a metal tin lid. I really believe in letting children use items that help them make connections and help them to engage in active learning, making discoveries and coming to conclusions themselves and not always guided by the Adult.

Here is Jay using his Magnet to further understand the properties of it and how it can be used.

 

I just love watching my boy make exciting discoveries and learning about his world, and I always have encouraged him to find things out that interest him. Last Winter, his life long interest in Space, was brought to life by making a Solar System for his room. There was not a lot i did not know about Space at that point. And who can forget his interest in all things Chicken?

Jay’s life long interests such as Trains and Spiders and Space never change, but it is always lovely when a new interest arrives. It can be triggered by a trip,or a book or something he sees online yet nether the less it always engulfs and enthralls him, so it is very easy as his Mum to get the same level of enjoyment out of these interests, and I am the type of person who loves to be always learning new things. I have shared my life long passion for Nature with Jay, showing him the natural world and encouraging him to learn the names of all the mini beasts, Birds, Animals and flowers, and so in return it is lovely to share his interests and obsessions too. They are definitely obsessive in Autism. But that’s okay -I understand Jay and I know the interest will always take over him, but as long as he is happy and learning Iam fine with that.

On a different note, something that Jay did a lot when he was in Pre-school, has come back to haunt me.  Jay at three, indulged in a sensory experience called Pica. This is common in some children with Autism, and involves the eating of inappropriate things to fufill a Sensory need or behavioural need.  It can also happen when the child has little or no understanding of what is edible and what is not, which we would expect a young toddler to do, as they do not understand when something they want to put in their mouth is not edible or safe. Because Autism at the low end of the Spectrum is often coupled with Development Delay, this means a child of nine can still not know if something is safe to put in their mouth and Jay certainly still does not. At three years old Jay ‘s favourite inappropriate item was leaves from a Buddleia. He was at Pre-school with a 1 to 1 yet he still managed to get hold of the leaves, and would put them straight to his mouth. Of course his 1 to 1 always intervened, but it was obvious that Jay was Sensory Seeking and would chose many things to put in his mouth, most of which were not food. Now , at Nine, he is beginning to seek sensory input from items that are not food again. Yesterday I came in to our lounge to see him with masking tape in his mouth. I said no lets take it out we don’t eat that Jay, but he did get very upset as if he thinks he has done wrong he gets so distressed he often cries.  When Jay plays I have noticed he has begun to pick up items and put them on his lips and tongue. He has also started to lay on the floor and move back and forth on the soft rug. Our Care Manager believes it is time for Jay to have another Sensory Assessment as the last one he had at 5.  Then, it was found that Jay is both a Sensory seeker and a Sensory Avoider. So, with Auditory and vVsual stimuli he avoids, by putting his hands over his ears and eyes to avoid some sound or sight he cannot cope with, he will scream and shout to make it go away and even with Ear defenders he does this. With touch and smell he avoids sensations too, but with other senses such as taste he is a Sensory Seeker, so he actively seeks these sensations out. It all goes back to people with Autism having a scrambled, messed up Sensory System. Our Care Manager thinks that all these issues we are having with Jay reacting to Weather and to Bees and Flies etc , is due to his Sensory System not being able to process information as a Neurotically developed person would. It has been suggested that a weighted vest worn over his clothes may help Jay regulate his Sensory System better and result in less Meltdowns and Sensory Overloads happening. We also were taught a ‘Brushing ‘technique where you use a surgical brush on the child’s arms and legs for 5 to 10  minutes twice a day, to again regulate their system and calm them. We did this for a year with Jay when he was in Year 1 and i believe it may be time to do it again, as Jay clearly is not coping and is having between 10 and 12 Meltdowns or Sensory Overloads a week at the moment, and so Iagree it is time for another Sensory Assessment with an Occupational therapist.  This is set for the holiday in Half term so I hope we can help Jay cope better with his messed up Sensory System. In the meant time I have to watch Jay all the time and I never leave him unsupervised due to the Pica (inappropriate eating) and the sudden Sensory Meltdowns he has. It is quite basically like having a two year old and is a challenge, but we do it and this is one of the reasons we are not just Parents we are Carers. We must keep the child safe!

For now, I am enjoying learning all about Hydraulics and Magnets and that will do just well for the moment!

 

Autism Holidays- Why I never tell the truth about them!!

 

 

Three quarters of the way through the Easter break and to say the least my emotions have had to be kept in check this week!

Have any of my readers ever had the experience of smiling sweetly at a family member or friend or even the staff that work with your child, as they ask you the ultimate holiday question:  Have you had a nice holiday?

Only Parents of children with Autism will understand that for our Special children, the holidays are like sugar and spice! They are either filled with days of sweetness, happiness and wonder, or, they are filled with spicy hard to digest days for both Parent and Child. Children with Autism struggle with the Holidays. It is not that they do not want to be at home, actually their home is often where they are most comfortable, it is that their day changes from routine, to care free days with no pattern or design and this can throw them for a loop.

In Jay’s case, all his issues are made worse by this constant transitioning from term to holiday. Lately his Phobias have got worse again with the appearance of winged beasts in his space and the presence of a huge amount of tourists in our town with their many dogs. Lots of people with dogs are very kind to us, picking up their dogs or popping them on leads as they can clearly see Jay is scared. They see his behaviour and the Ear defenders and they put two and two together and most people are lovely. Some, are not. One woman, when we asked her nicely to move her dog away from Jay told us where to go. Moving on , yes we are having a hard time out and about with Jay at the moment. He is also stressed in the home too. He will go in to Meltdown from something on his favourite channel or on his computer, however these cannot be switched off, oh no, they have to stay on. I think it is because he believes they are broken when they are switched off. It devastates him and so they stay on.  All Jay’s reactions to things are driven by Sensory Overload and for Jay there are triggers everywhere!

Laughing out loud as I write this I refer back to the smiling sweetly at people. Everyone says to me ” are you enjoying the hols? Did you enjoy the hols or Christmas or Easter or Jay’s Birthday etc etc?  Well, quite honestly if I were to tell the truth they would probably judge me and call me a bad mum. The truth is, what these people cannot seem to understand and just do not get, is that for us the Holidays and special occasions are really hard. When we say this we are not being negative. It is the truth. On Jay’s birthday we took him to a Sealife Centre, and to the public who follow us I said yes he had a lovely birthday he loved it. That is actually a lie. He did not love it because half way through a Bee flew at him and ruined it and he was Anxious and in Meltdown after that so we had to leave! On Christmas day he was overwhelmed and suffered Sensory Overload. At Easter, he had a great first week then the four day weekend he was in Meltdown and Anxiety and OCD and Phobias crept in again, causing our little man real distress and us because seeing him like this is the hardest thing.

Laughing out loud again- because when my family and friends and staff ask me if we had a nice holiday I will again smile sweetly and say yes we had a lovely time! It feels false. It feels like I am not saying the truth because I don’t want to upset people or that they will judge me. The lies we tell just are to please people and to tell them exactly what they wish to here. Life is simply not like this. It is not always happy children on holiday , celebrating their birthday or a special occasion. For us, these events often mean the hardest days we ever have in our roles as Carers. Believe me I want it to be different, in that I wish I could be honest with everyone, but at the end of the day, some of the time off is good and happy so one must not be too negative. Laughing aloud again, as I sit here writing this , having calmed my son three times in an hour before he went off with his Respite worker. I even find myself lying to my Husband when he gets home because I do not want to bring him down. I say all is well and I am fine, when really I have been shouted at and told to go away and have had to see Jay through a Meltdown and I am completely shattered through that, but  I force a smile and say all ok how was your day?

True I am using a daily schedule to support Jay so that he knows exactly what he is doing each day, and this gives a sense of routine but it is not the same as the School routine. With Autism the child will always feel unsafe without those routines and that’s why they have high levels of Anxiety and other problems. Recently I was honest enough to admit to my Respite care coordinator that I was feeling a little stressed over Jay not being able to step foot in my garden or that he cannot be out at all with out the Phobia and Anxiety draining him and me, and he said it sounded like I was Anxious too. Dam right I am! It is very hard and I am an outdoor lass who loves Nature so it is doubly hard for me to stay in for Jay, although I do it for him whenever he has shown the need to zone out and come back to his safe spot. Constantly having to calm a child whose Anxiety levels are always high in the Holidays and always at the Fright or Flight level takes its toll on the Parent. For the child it is ten times worse. It makes me so sad that Jay has to live this way, and no matter how I feel, his feelings will always come first. I always return home if he is in Sensory Overload, I always come home if his Phobia hits and I give Jay space when he needs it to re set and re group. I listen to my own advice and switch off from the turbulent emotions running through my very soul, and get on with it, but it just makes me laugh because I will still lie to whomever asks me if we had a good holiday! I know many people lie about their true state of mind when asked if they are okay, but for us its all the time every time. I honestly feel like even with family and closest friends, that I cant tell the truth. They would listen, and then probably make their own judgement as that is what people out there do, although my family do support us. People can say they understand but they really don’t. You have to live with Autism to understand just how consuming it is for the child and the entire family. This is why using Respite is a good idea , as I said last post looking after yourself too is vital as you are no use to the child in a state yourself.

I will go on record on here as saying I am a true believer in Respite, both for the child and the Parents and Siblings. Always accept any help you are offered because there are days when the Respite can save you all, believe me! When everything calms down again I shall reflect on yet another holiday with Autism, and perhaps even smile at how we got through it and came out the other side reasonably well. Once more I need to stress how the child is never to blame. It is the Autism and in Jay’s case, the delays that lead to the issues and the reason we carry on is through pure love for that child. Love carries us forwards, and enables us to move ahead to the next day and face it head on. So the next time you ask a Mum with a child with Autism whether they had a good holiday perhaps be understanding that they probably are under huge stress but don’t want to say so. It is always worth digging a little deeper as they open up to you and tell the actual truth.

Never judge a person until you have walked a mile in their shoes!!

 

The Autism Parent: the vital importance of a calm mind.

 

Looking after our Special Child’s emotional well being is our responsibility, and many of us rise to this challenge every single day!

Yet, as Carers and Parents of Special children, how many of us can honestly say that we take the time to look after our own emotional health? This blog post today is about us the Carers and Parents , and how we can learn to cope mentally, with the everyday stress and challenges of Autism.  All my readers know how amazing we know Jay to be, and how much we love and respect him, but if Autism was easy then it would not be a special Need, and so to talk openly of the various challenges we face is to be real here, because I never promised just to discuss the brilliant side of Autism. We know Jay to be clever and intellectual, and incredibly special in his gifts. We acknowledge this every day and his loving nature makes him a joy to be around. Putting all this aside, the other side of Autism is where the stress can come. Early on in our journey, before we received the diagnosis and then the support, we were completely stressed all the time. Constant Meltdowns and Anxiety and Sensory Processing issues and Phobias were all present in Jay in our everyday life and to add to that, no sleep for us all before Melatonin appeared.  Alongside this we were working Parents too. My point is, is that four years of constant stress and pressure started to show in us, and in me particularly, as the main Carer, and eventually the scars began to show. I stopped sleeping, and had constant dreams about being chased by a T rex and at the time, I assumed the T rex was the Autism. I had always been fit and well, and suddenly I was feeling drained all the time, and because I did not have the support network I now have, I was left alone to deal with my issues of all I had to worry about, on top of a stressful job. Sometimes I felt so isolated and I could not even go in to my town, as Jay was constantly in a Sensory Overload Meltdown there.

I am sharing this early memory, simply because it has a lot of relevance to this post. Because, you see, after four years of what I now know was chronic stress, I began to feel ill. I did not know what was wrong, or why I was always in pain and utterly exhausted, and why I kept forgetting the Children’s names at work, or why I suddenly could not walk up a hill. All the while I was caring for Jay who was 6 at this time, and at this point we had some support in place in terms of Occupational Therapy and Psychologist  support, but I just knew that something was not right in me. I knew I had suffered a lot of years of worry and stress and also lack of sleep, yet I could not put my finger on what was wrong. Then the truth came out. In August of 2016 I was diagnosed with Fibromyalgia -another Autoimmune condition that causes chronic fatigue chronic pain and stiffness and it took some of my mobility. I could not walk far and was in chronic pain, and had chronic fatigue. I became aware that what I thought was the aftermath of Jay’s diagnosis years and his younger years when he could not speak and would just scream all the time, was actually a real health condition and a debilitating one at that! I did my homework and it is well known now that Fibro can develop after an episode of extreme mental or physical stress on the body, and the immune system can respond to long term stress and also lack of sleep and cause this condition.

Now of course I am not blaming Jay at all. I could never blame him, it is not his fault he has Autism. I am simply saying , that the effect on me could have triggered the condition to come on, and as I have had Autoimmune conditions before I am prone to them. The stress certainly would not have helped and I realised that I had to make changes. I left my job and took a part time admin job. I referred us as a family to Special Needs Social Care team for some extra support, and the referral was the best thing I ever did. We went through the process and were referred on the Disabled Children’s team and were granted money for Respite care year round. We now get respite support every two Saturdays, every Thursday, and all through the holidays. I need help to care for Jay, as my condition is seriously debilitating and the mobility side means I do need crutches at my worse flare ups and so I cannot hold Jay, so a worker will help me to take him out at my worst Flare times. I have lovely workers who support our family and it also is so important for Jay as he needs to be away from his constant Anxiety and OCD rituals he has within the home. Going out with the charity we pay to help us, means Jay is able to have experiences away from us with other children with SEN whom he often knows from his SEN School, and that I can rest up and be ready to go again in to my caring role when Jay returns.

So, we now have support in place and a constant steady routine that Jay loves and is happy with. He loves being with Mummy and he also has close bonds with his three workers too. I do believe that my Fibro was caused by that period of stress in my life plus my own immune system responding badly to stress, and so a period of reflection was needed. I had learned Tai Chi a few years earlier to having Jay and so I went back to the principles of this ancient art. Our bodies require breath to survive. We need to breathe. But many of us do not take the time to stop, stay still and be present in the feeling of breathing. Tai Chi teaches us to be grounded like a tree. Our breath is the life force running through us and keeping us well and healthy. When this balance is upset by events and emotions and of course, stress, the rhythm is broken, and we forget to stop and just breathe. I went back to taking time each day to sit in meditation, and to just simply breathe in and out steadily. Proper Meditation creates an amazing feeling of calm, where the whole body relaxes and the moment you stir from this you feel obviously calmer. I have shared before that I love all things natural, and Jay responds to this too. I only have to watch a beautiful sunset or a starry night to feel calm and relaxed and happy. I go Bird watching and Nature watching and this is a lovely calm thing to do. Like Jay I see beauty in the natural world and I do feel blessed to be able to pass that on to my children, so that they may also use it when times gets hard. I believe that to be close to nature, heals us and I needed to be healed. Even if it never heals my condition, it gives me the tools in which to cope with it and to help me care for Jay.

Staying calm is the single most important thing a Parent Carer can do for their child with Autism! The way in which we react is everything. I have never been anything but calm with Jay, as I learned very early on that any other reactions makes him so devastated. This is because children with Autism do not even know how to cope with their own emotions, so to ask them to try and work yours out is like asking them to fail! It can be very scary for a child with Autism to hear someone lose control and it is best avoided. Over the years I have gained a strong sense of self control. My husband and I do not ever raise our voices or show we are displeased if Jay is in meltdown or upset. We simply say to him “you are safe and you are okay. Everything is going to be alright. This is just a feeling, it will soon pass”   This is what we say no matter what is happening. There is a saying that goes ‘ if you cannot change the situation then change the way you respond to it, this is where your true power is’ Learning to respond to difficult and stressful situations that constantly come at you as a Parent Carer of a child with Autism, in a calm efficient manner and in a non-emotional way, takes lots of practice. But if we truly put our minds to it, we can achieve this. It is a skill to learn and you have to want to learn it to achieve it.

Worrying is very hard to control for us, as there are so many worrying elements with Autism and in Jay’s case the Global delay, which means he will always need caring for. The future!  Oh my, I do not even go there now in my mind. I pop the thought in a box in my mind as its far too overwhelming. I am an older mum you see in my 40’s. The other day we went to the Dentist with Jay, with the sole purpose of getting him a referral to a Specialist Dentist as he would never cope with a drill in his mouth and would need to be sleeping for them to do it. Jay did so well and let the Dentist look at his teeth. I told the Dentist our dilemma and she was understanding and said she would make a referral. But she said sometimes they have to need actual treatment for them to accept them, but that Jay’s condition may be enough. She then asked me to write the condition down on his health form, but afterwards because Jay wanted to go, I only wrote down briefly-low-functioning Autism and Global development delay. There is so much more to Jay’s condition that this and when I got home I began second guessing and thinking I had not said enough. Oh and what if he needed a filling and was in pain and I did not say enough? All these questions!  I suddenly stopped and thought ‘no I said enough it will be fine’ But I constantly think with his Health, have I said enough or spoken out enough?

Going back to reacting to stressful times with Autism, let us return again to the most primitive of systems we have- our breath. It is life. Children with Autism have strong fright or fight reactions to many things and so they are constantly in high alert which is utterly exhausting for them If we can learn to train our minds to reset and re group and to still our turbulent emotional responses to stress, then in time so will the child learn these coping strategies. All along I have taught Jay to take deep calming breaths each time he is anxious or stressed or going in to Meltdown. I tell him to pretend my finger is a dandelion and he can take a deep breath to help the seeds to fly. This has worked for years for Jay and now I can say take a breath in Jay and out and he will respond and understand. It really does help to calm him down. This most basic and vitally important system we have is useful in also controlling not only our emotional responses, but also our reactions. If we react always in stress, and with highly emotional responses, then our immune systems will, for that moment, become repressed and that allows illness to get it. Be that a cough, cold or flu, or in my case and many others, a more profound condition like my Fibromyalgia.  I really wish that I had known all this in the beginning of our Autism journey when we had no help understanding or support, and that I had not allowed myself to let stress in. But I guess when we go through hard times we are not really mindful of just how much it is affecting our over all wellbeing until we come through the other end and reflect and realise just how stressed we were.

It is so important not to blame the child or even feel resentful. Even negative emotions like these can bring down your immune system and cause ‘fright or fight responses. I believe the best thing we all can do, is to disconnect from that side of Autism and adopt a ‘can do’ positive attitude that we in Yorkshire call the ‘crack on’ attitude. Again, remember this- if you cannot control what is happening to you then control your response to it- that is where your true power lies. When times get hard with your Special child, no matter how you feel, stop and think, take a deep breath, and breathe it out, before you respond. The long term goal here is to re-train your mind to respond calmly. To master the art of remaining calm is an example of a truly strong mind. It gives you a coping tool to find real solutions to whatever Autism throws your way. It helps your child also learn to remain calm or to re set and calm down, and also means your mind and body will stay more healthy. This leads to a clarity of mind and re trains your thinking and results in a calmness of spirit that can get you through the bad times and give you hope. Then, when the good times happen you are able to truly appreciate them for what they are!

A healthy body starts with a healthy mind. Looking after our minds is just as important if not more important as physical health as the body will follow wherever the mind leads!

 

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”

 

dav
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.