OCD Traits in Autism-Jay and Obsessional Compulsive Disorder.

 

 

Having a child who has Autism is very fascinating!

Jay is constantly changing, and no two years with him are ever the same.

Autism- this condition has been present in Jay since birth, yet looking back, so many traits have developed over time, some that were always there, such as Stimming, and some new ones that rear their dark heads from time to time, becoming quite difficult to manage and live with!

Last post, I promised to talk about OCD. Obsessional Compulsive Disorder! According to Jay’s Psychologist, the OCD that exists with Autism comes in the nature of ‘Traits’ rather than full blown OCD, which can also exist outside of Autism. I accept that, however, Jay’s OCD controls his life and ours , so it is very significant whether it is just ‘Traits’ or not!

Those of us who live with or understand Autism, know that many people with the condition require sameness and control in their lives. This is a Paradox. It is simply proven to be true by many people with experience in Autism, and in those who have it.

We never saw OCD in Jay until he transitioned to Year one two years ago in his mainstream School. Things began to change very fast.  Being in Reception and in play based learning, meant that Jay had control of his day at School and the way they were taught was well in line with his Delayed Development. However, change was to come within a few weeks of starting in his Year one classroom, where more structure and less free play was expected of the near six year olds. This did not bode well for little Jay, who had been able to manage Reception play based learning quite well. The way a Year one classroom is presented, is different from a Reception or Nursery class. The whole environment is more clinical and more conducive to study and to the main elements of Maths and English. There are less picture based posters and less play and sensory based learning areas.

Very soon in to the year, Jay began to seek control in other ways, as he felt out of control with this new classroom less suited to his needs. He began to switch the lights off, close and open doors,  drawers and cupboards, turn objects and books upside down, and switch off computers. He cried whenever his Teacher opened the cupboard, or opened the door and would run screaming over to them to close them again! He would knock down displays as he wanted the objects to look a certain way, and would barricade the door so people could not open it! The staff could see he was showing genuine emotional responses to the opening of doors and turning on switches he had turned off. The Staff were keen to help us to get to the bottom of it all. Luckily they remained calm about it, helping Jay to manage his feelings by allowing him to have quiet time with his TA.

However, no one seemed to realise there must have been a reason for this behaviour. Children, SEND or not, rarely display behaviours for no reason. Ironically, it was not a School Staff member who hit on the reason, or even me! It was , yet again, his Psychologist. I went to see him with Jay and told him everything, and within ten minutes he had enlightened me to the real reason behind Jay’s strange behaviour and the disruption it had begun to create. The Doctor said that because of Jay’s Development Delay, coupled with his Autism, he obviously was not coping in the more rigid Year one environment because it was not conducive to meet any of his needs. Plus it had started with Year one. There were no play based learning, or Sensory play areas. There were no areas to hide away in ‘enveloping’ dens or hides and no pictures to support Jay’s learning.  Jay, had, at that time, the brain of a toddler, who could not read or write and the room made as much sense to him as it would’ve to a baby. Once again, this man had understood my child better than me! He said that, because of these things, Jay had felt out of control of his world and unsafe in this new room, not equipped for his developmental or sensory needs. He was really trying to gain back control by going around the classroom changing things and  this made him feel safer, calmer and more in control. He suggested the School make many changes to the room to meet Jay’s need so I headed in to School to share the ideas with them via the Senco.

The Senco’s first comment was did the Doctor want Jay to go back to Reception because that was not possible? I said that he had said that Jay could learn in the Year One room if adaptions were made. The Classroom was adapted to provide areas of Sensory based play such as sand and water and shaving foam. It had tents added for dens and an area especially for Jay with his sensory toys there at all times. In fact, the room looked so fab by the time they had finished, that I was told the other children preferred Jay’s areas to their own! The changes made, helped Jay to settle better and I am lucky the School acquiesced and were willing to make the changes.

At home, Jay was doing the same. He was shutting doors, switching on lights, closing cupboards and drawers and when his two siblings entered a room he began to force them out in case they changed something. It was very hard and stressful, yet they bore it so well bless them. A solution presented itself like it  often does at breaking point, when a friend suggested I make Jay a fidget box full of benign light switches, loose bolts, bicycle bells and old phones, in which to fiddle with and open and shut etc, thus creating opportunity for Jay to go to his box whenever he felt need of it, instead of using the household instead. Did this work?

Well, it worked in the beginning. The OCD behaviour went on and on and began to change and present in other ways. He would turn all my ornaments around, and turn books to their back cover. He began to request that I cut out paper pictures for him of his favourite characters from books or from interests. I made planets and insects and animals for him, and once drawn they had to be cut out. But not in the normal way. I had to cut around the shape but not right up to the shape. If there was a cut in the outline of the drawing Jay went into Meltdown. If the paper bent in shape, Jay went into Meltdown. If the drawings were not done a specific way Jay would go in to Meltdown. He wanted control of everything! Our Care Manager witnessed this first hand one day when she came to see us.  You may say, why not just say no? I have learned never to say the word ‘no.’ It hurts them! Hurts their feelings as it is so definite and so final. To a child with ASD ‘no’ is too final a comment and leads them to despair. I would say instead, ‘Not now or we do it later.’  So I made the items whenever he asked me to as a way of helping him remain calm and focused, because if it all went well, the activity calmed Jay’s OCD. It WAS the OCD driving him to want the drawings made and the repetition of making them in order, and over and over again also helped calm him. How many mums would make the same characters on paper every single day for a period of time without going crazy and saying ‘no we are making something else?’ But you see, if I say I wont make them, Jay’s face crumbles and he bursts in to heart felt sobs and will be so sad and then develop awful Anxiety. It goes back to my earlier post on parenting them in a different way. A neurotypical child would not ask for drawings of the same thing again and again and would also understand when it is time to stop. Jay does not understand. It is that simple. So, I do it, I do it to keep my son calm and happy and I need the patience of a saint to do this every weekend and holidays.

Below are Jay’s cut out drawings of a well known Caterpillar story, and he places them this way in their order every single morning before he does anything else.

 

The drawings are placed  in the same sequence daily and cannot be moved without a Meltdown happening. Jay is seeking control yet again as a way of calming his anxiety.

Over the years the cut out paper drawings change depending on his interests. We have had planets, minibeasts animals, pets and weather pictures, all are sequenced and carefully set up each day. It makes it hard to clean and to sit down!!! Jay will also cover up  holes and gaps in his house and at the side of his bed-he fills it with soft teddies. Holes and gaps drive him nuts and bring on bad anxiety. He had holes in his ceiling once, and every night he would stare at them and say ‘ don’t like holes ‘ He would ask to be picked up so he could see them closely and would not sleep until his Dad had covered them. I allow Jay to have this control , because it does not hurt us or affect us, other than helping him, and because it helps him to self regulate! This is OCD and Jay feels he has to do these things to stay calm. His Autism is driving these OCD traits NOT the actual  condition of OCD.

Jay has to have the same food every day. Any deviating will result in Meltdown. Jay eats a very healthy diet, yet each food has to be served the same way and away from other food and separated in bowls so it does not touch. His packed lunch is the same each day, and again, must be presented in the same format each day. He is restricted to only four main meal options as he has food sensory issues and phobias, therefore all his food is always the same for each meal. Luckily he will eat a good mix and so he remains healthy. It is his OCD that means certain foods cannot touch or be changed and again he needs this to feel safe and in control. Because he has enough of a balanced diet still, I do not worry and I give him the same each day. Some would not. That is up to them, but as you all know by now, I will support my child and help him feel safe no matter what, and without judging him.

Jay will wake up on a morning and when I go to him, he has never ever said hello or good morning. I say it to him of course, but he brushes me to one side to begin his rituals and OCD habits. He will get his Spider and soft toys and take them downstairs, then he will arrange his pictures on the sofa, move the cushions, put on his favourite children’s channel that all toddlers love, then rewind four programmes using our remote, which he believes is his, and then expects his breakfast on the table ten minutes later. God help us if the TV is off or he misses a show or cannot rewind it, if it goes wrong he will go in to Meltdown.  All these things are, to him, much more important than saying hello to his mum! I totally get this. Other mums would say things like oh how rude or make him say hello! It is the difference between the Autism mum and the regular child’s mum I’m afraid, and believe me when I say that my older two DID say hello and were expected to speak to me. It is all about understanding!  If you continue to expect a child with ASD to be the same and act the same as neurotypical ones you will not get anywhere. I say that nicely. It is the Autism that makes Jay forget to greet me as he does not see the point in it. I am there-that is enough for him and that tells him he is safe. All of the etiquette of the world means absolutely nothing to him, no matter how much I try and teach it, he will only say what is necessary, not what society says we should say! Jay lives in a completely different world to others and his world must be within his control for him to be happy. It is what you CHOOSE to act upon that defines the bringing up of an Autism child. I choose to ask Jay to say goodbye to family when they leave, and I choose to ask him to say goodbye to me when I go anywhere and leave him with a Carer, but I do NOT choose to interfere with his morning rituals which are necessary for his happiness and his ability to face the day!! It really does not hurt me or should I say I do not let those sorts of feelings in. This is because you have to learn not to take this stuff personally. It has little to do with you or their feelings for you. It is actually Literal thinking. They only do what is necessary and the way their mind works falls more to Literal thinking and so saying hello, when all they their mind tells them to do, is to do their rituals or OCD activities,  is exactly what they will do, with little thought for you. We cannot ask more of any person, than what they are able to truly give, and the key to accepting these traits is in understanding that it is not in our control, no matter how much we like to think it is!  The Child’s Autism will rule them not you the Parent in situations like these. They need us to understand them and react only when it is absolutely necessary to their safety or that of others.

Choose your battles!

 

 

Posts to come:

Autism and the Natural World.

 Rigid, Literal and Analytical Thinking in the Autism Mind.

Autism and Phobias- helping to over come fear and phobia associated with Autism.

The Calming Effect of Technology on the Autism mind-How Jay uses Technology as a Calming Mechanism.

 

In the Autism world, Anxiety goes hand in hand with the condition and Jay is no different here!

The Anxiety, that goes with Autism, is debilitating and over-whelming and I have seen it first hand. I cannot begin to tell you how hard it is to see Anxiety engulf your child, and prevent them from having a normal life.

From a very young age, long before diagnosis, Jay created his own way of dealing with the all day Anxiety he always had, and still has now! Many triggers would set it off, and finding the triggers got harder and harder, as they amalgamated and became hard to predict.

Technology. It exists for so many functions. One function it has, is to be of use to the child with Autism, who requires a diversion and relief from the ever lasting tidal surge of Anxiety on the mind. Jay was visibly anxious throughout the day, be it a home day, or School day, it did not matter, he was still anxious. Eventually we began to twig, that when Jay was engulfed in any activity that included the use of technology, he became visibly much calmer, and to our delight, the use of technology, stalled, and at times prevented or stopped a Meltdown, caused by the build up of high levels of Anxiety.

So, we began to buy equipment for Jay. We bought a Tablet, a Computer, and a music CD player.  Whenever Jay showed signs of high Anxiety levels , we would direct him to one of these to help calm him. In the beginning, it was music and his CD player that calmed the Meltdowns and Anxiety. He would put headphones on and would calm down. Sometimes it failed and the Meltdown would follow, the result of high levels of anxiety that could not be calmed. However, the number of these Meltdowns lowered, with use of the CD player and the calming effect it had. I believe it zoned him out. He had a distraction, and I think distraction is a very efficient coping tool for the children who have Autism and certainly for Jay!

Jay soon required more to help calm his Anxiety, so we got him a Tablet. For a long time and into Year 1, he used this Tablet, again as a diversion and a coping mechanism. Then, suddenly it was not enough again. He began to throw it and scream at it, and what was once a calming piece of equipment, became an actual trigger for Meltdown. It was then, that we applied to a charity for a grant to get a Computer especially for Jay. We received a Computer, that was fantastic, as it had a touch screen too so Jay was able to control everything about it. It calmed him and gave him a happy place to go to take his mind off his feelings and his debilitating  OCD and Anxiety. The funny thing was, he was jolly good at controlling the Computer! He got so good, that at School one day, he actually managed to turn the screen and it’s programme, completely upside down! The actual programme I mean, not the P.C! Nobody had ever done that before and the School had to bring a Technician in to fix it!! I offered to pay but the School wouldn’t hear of it! How Jay did it we do not know-we only know that he understands technology at a far higher rate than his developmental age.

 

Using forms of Technology to cope with high levels of Anxiety.

 

The biggest problem with using technology as a calming mechanism? Yeah-it can break!

Not good! When your child relies on that calming influence, and then that influence is suddenly not there, that is so scary for the child and Carer. Because we know that one of the biggest Meltdown triggers is things breaking and going wrong! It is unpredictable, unplanned, uncontrollable, and quite frankly, to my son Jay, it is the end of the world as we know it! I absolutely dread anything going wrong with our Computers, or Tablets or music CD players. We have one in the car and if it breaks Jay will go right there and then into a full blown Meltdown! Again, this is not bad behaviour, or spoilt behaviour. It is Autism behaviour. When that form of technology fails the child, they no longer have control over it and the calming effect is now gone and they are left with high Anxiety and all those feelings collide with the fact that the thing that they relied upon has now gone wrong and they feel powerless to fix it. Jay will shout at this point, asking me to fix it over and over until it is fixed! If it wont fix he will Meltdown. Once, our T.V went off and Jay could not watch his favourite shows after School. Those shows are always there for him after School, and help him stay calm, when he is trying to process the day, and  they mean everything to him. He has connections with the characters, he relates to them more than people, and he feels happy around them! Maybe it is because he can be himself around them, they are not threatening in any way, he does not have to put a brave face on for them, they are just there for him. So, when the programmes would not work this particular day, it was a massive trigger and Meltdown descended on to him in it’s all consuming fire! There is no reasoning with Jay when he gets in to this state. Simply saying stop will not make a scrap of difference, because the reason is not behavioural, although it may look it, it is physiological.

This is because, when a child with Autism, has constantly high levels of Anxiety, their body stays in a fight or flight mode all the time! That is exhausting for the child. Jay has these levels all the time, and the only things that calms him in our home are his toys and technology items. They are SO important to his well being! He needs the security of knowing his favourite T.V characters will be there for him after School, and that he can go to his Computer whenever he needs to, to help himself to self-regulate. If your child has these Anxiety levels, then it is absolutely imperative that they acquire self-regulating skills, because it is unlikely that the Carer will be able to calm them. It is a hard thing to accept , that your adored child requires other means than you to calm down, and attain calmness again. So I would suggest to Parents wondering whether to give in to the lull of technology, to go for it and get you child some form of it, to help then learn to self-regulate. I worried and worried that Jay would be addicted to forms of technology, but honestly, he has not, and when you are faced with a Meltdown that is so heart wrenching to endure, and even worse to over come, you may feel that the slight risk of addiction is nothing compared with the calmness attained by using these machines for times when they need to zone out. Jay has always done other things as well as his Computer, and because we have Now and Next cards for schedule, we are able to minimise over usage anyway. So maybe invest in  PECS cards and use them to ensure the child using the machine also has time for other activities-it works for us.

Today, I observed Jay using T.V to self-regulate.  I came in to the room, and he was jumping. His face was red and showing signs of a sensory overload coming on. I went to sit down next to him, and observed his breathing. It was fast and laboured. He was becoming anxious. I know these signs and they always lead to a Meltdown, so I continued to monitor his Anxiety levels , and suddenly he jumped much faster , and began to ‘stim’ He flapped his arms, and jumped fast, whilst making stimming noises and he continued to do this for a whole 5 minutes.  He then became visibly calmer, his breathing slowed and his colour returned to normal-he was calm! He had done it himself for the first time ever!! He had self-regulated!

I was so proud!

 

Jumping to self-regulate, using Technology to do so.

On a recent trip to a Walled garden, Jay managed to stay calm the entire time, but today we went for a walk using his SEN Buggy, and Jay was crying the whole time saying he wanted to go home. Jay has an attachment to home at the moment and we are very much struggling to get him out anywhere. He cries out and shouts ‘no’ every time we say we are going out, so now we are saying to him simple consistent phrases to help him to stay calm on any transition or change to the day. We now say “ first trip, then home” This is using the First and Then strategy and it is working to a degree and we will continue to use this way of communicating a change to him. However I am concerned about the big change coming with School beginning again. Last year when Jay started his SEN school he developed a severe phobia of bathrooms and it got so bad he was with- holding and would not enter that room- it was a scary time for us as it was escalating as many of Jay’s phobias do.

So next time I write, I will tell you all about one of the most challenging traits Jay’s Autism brings-OCD- Obsessional Compulsive Disorder

 

At the Walled garden -a successful trip out!

 

 

Low End to High End -a Two Year Old Mind in an Eight year Old Body

 

Once upon a time , there was a very clear picture on the way Autism is diagnosed, and in some areas of the UK there still is.

There even appears to be an existing comparison between the High and Low end of the Autism Spectrum, that exists both in the Professional world and the Parenting world!

 

In our area, they have changed this, by making it simple. On Diagnosis, children are not marked as Low or High Functioning Autism anymore. They are diagnosed with simply Autism Spectrum Disorder or ASD.  The one and only reason I know where my son is on the Spectrum, is because I researched it after Diagnosis, and because he has an added Diagnosis of Global Development Delay which, is only ever seen in the Low Functioning type!  So, what was the reason for my Health Authority changing the way they diagnose Autism? I actually asked on the day Jay was diagnosed, and I was told it is because of the general assumption, that a child with Low end requires more care and is worse than a child at the High end. This leads to those with High- functioning or Asperger’s, potentially being left out and missing out on the vital help they require. This is because it is considered a milder form of Autism than the type my son has. Those who have the high end types and their Parents were left to fend for themselves, and to be honest with you all, I believe from the people I speak to, that this is still the case, even with the one type of Diagnosis being given to ALL children in our area.

I speak a lot to Parents in my area, as I am quite well known in my local town and people know I have been through the process.  Every one of the Parents I know have children on the High end or Asperger’s Traits. This means I get to see the way they are treated at their Schools or by the Health Professionals, and how support in Education, for these high end children is thin and not constant. These children struggle at School, because their needs are not met. The Schools cannot get Funding for these children because they are not deemed ‘bad enough or severe enough’ to receive support and funding for extra TA’s or Educational and Health care Plans. This is happening everywhere and is causing a crisis, as I am sure many of my readers will be aware of.  Obviously, the way we get diagnosed could be responsible for this, along with lack of Education and Training in Teachers.

For us, our path to support ran smoothly from the very start, as Jay is on the low end of the Spectrum and has Global Delay, therefore, help was always granted to us.

In some way, the type of Autism Jay has, can be worse than a child with High-Functioning in terms of the fact they are like two year olds and have little or no language. High end, typically are not delayed and generally do not fall behind in School and can take some of their care on themselves, however, this does not mean they can cope in the world! Often the children and young Adults on the High end are stuck in Mainstream School, with staff who do not understand their Special needs and who cannot support them all the day due to lack of funding and training, therefore these children are at a disadvantage already without the required help they so desperately need. They also have many of the Sensory issues and mental health issues that come with the Low end, yet they have probably a third of the support that severe children get. I know it may be a matter of money, but I do not accept this as a excuse, as there are too many children right now, who have supposed more milder forms, who do not even have a School place, or have help, yet children spend six hours a day in school, so to not put in the correct level of care and support in place for them is a disgrace to our nation and is letting down children and Families big time!

On the flip side to this, was our Parent Training course, offered after Jay’s Diagnosis, which we felt , covered Autism mainly linked to High-functioning.  We attended six sessions and were the only parents present whose child was Low-functioning. By the time we got to the third class, we began to realise the course covered no references to globally delayed Low-functioning children and we felt left out and forgotten about. All the information we got came from books and the Health Professionals we worked with after this. I left honest feedback to the course tutors and told the truth. I said you have to cover more severe end children, as the whole course content dealt with many of the high-end traits like being exceptionally bright, and support in Mainstream school etc. The best thing we took away from the course, was an introduction to the Parent Liaison from Jay’s now attended SEND School and an early visit to this School arranged by this lady. So I am grateful for that. Generally speaking though, there is no need for the comparisons between the Spectrum ends because all of the types of Autism including rarer forms such as PDA ( Pathological Demand Avoidance) and also ADHD, require the child to receive good all year support so that they can reach their full potential, and that after all, is what the legal SEND requirement is for all children, although we all know it isn’t happening!

Jay’s Low-functioning Autism causes him many of the same challenges as upper end children. It is his Global Delay that challenges him the most. With lack of understanding of language and his surroundings, Jay is incredibly vulnerable and as I have told you all before , has no understanding of danger or his whereabouts or even who he really is.

Jay requires access to Sensory activities daily. Jay sees his teddies as real personalities, he chats to them in his own language, and includes them in his every day life. He even makes me ‘talk’ as them, asking ” Spinney and Crawly want to talk”  I then have to put on a high pitched voice and speak as the Spider teddies he loves.  I use them to teach him about the world. When we go out with Jay, we see Jay being spoken to as an Eight year old as he is very tall for his age and they probably imagine him to be ten! I was buying him an ice cream last week at the Railway café near our home, and the lady serving asked what flavour he would like. She addressed this question to him, and he of course did not answer. The lady waited and I spoke saying that Jay would like Strawberry please. I knew his favourite flavour and had to speak for him, as Jay will not look at, or speak to people, even his own family at times. He will give eye contact at times if its on his terms.  The lady then said to me ” does he want a flake?” I think she had cottoned on at that point. I encouraged Jay to say thank you by saying ” say thank you Jay”  Jay’s response was to say ” say thankyou Jay” Can you hear in that what he was doing? He was using  ‘Echolalia’ -the repetitive use of random phrases heard in his life but not understood. Another trip out, we took Jay to a toy shop and once again the shop assistant asked him a question that was perfectly in line with what she thought his age to be by his height. This time I said to the lady in question, that Jay would not answer as he has Autism. I just had to say it. I do not go around telling just anyone trust me, but sometimes it is necessary as people just look so offended that the child has ignored them and I also feel the general public should know so as to be more educated about Autism.  If Jay has his Ear defenders on, people tend to know something is going on, yet if he does not it is an invisible Disability and they then react in a quite different way, than if the Ear Defenders are on him thus announcing that there is Special need there. On the other hand it is nice when people speak to Jay and I certainly would not want him to be ignored. I just wish Autism and Global delay were more understood, in all forms and in every way.

One of the things I love the most about Jay, is his ability to see the world in complete black and white. An ‘absolute’ place, where the rules control the fun, and where he can look in detail at the beauty around him. Jay is probably the most challenged young person in my big family, yet his life is simple, consistent, and straightforward – it is the neurotypical people of the world who complicate life and make what should be a happy place, at times unhappy. I love, that to Jay, the whole world around him is his playground, and a wonderous, amazing, and  beautiful place in which to live. I sure wish I could see the world through his eyes and that the world was truly like that. Yet we can all learn something from the people of the world who have Autism! That is, to appreciate what a stunning world we live in, to look for the beauty it offers, and to keep alive a warm and happy spirit and a loving heart -appreciating all that we have and all that we know to be good and right in this muddled world of ours!

 

 

Next Time: The Calming effect of Technology on the Autism Mind!- How Jay uses technology as a calming mechanism.

 

 

Life before and after Diagnosis-Support and how to acquire it!

 

Jay is generally a happy child! If all is right in his world he remains calm and contented in his home and the surrounding areas! However , this has only been achieved by the many ways in which we and others support him, and that takes us back to way before he was diagnosed and the chaos our life was with the onset of Jay’s Autism.

 

Trust me, we cannot achieve a relatively calm life with Autism if we do not receive help in some form. Even if it is just surfing the web or reading a book, we are still being supported and educated. The level of support we can receive for the child and the family depends on many factors. Where you live, your Local Authority’s generosity, charity support availability and outside family support, plus the severity of the child’s condition, all contribute to the help a family may get.

Before Jay was fully diagnosed in 2015 at five, we had a few hours one to one in Jay’s reception class. This stayed the same after diagnosis to begin with, until the school requested an Education and Healthcare plan or EHCP from the Local Authority. It was not until Year one , that this was granted and suddenly it was totally different! The School now had the money to provide a full time one to one, although I was amused when the County Hall lady sneakily suggested we did not have to spend our allocated budget on a one to one! I was not to be tricked-I was going for the one to one.

We also received an invitation to attend Parent training for Autism-our County council called it Cygnet Training.

Outside of school life I had already been given the contact of a local Charity, who provide Respite, support and help to the families of my area. It was this person to whom I first admitted that things were getting difficult with Jay’s condition. The Care manager informed me that for Respite care I would need to self-refer to the County Council’s Social Services Disabled section for an assessment of need which would be completely personal to our situation. It was with slight trepidation, that I picked up the phone one day after several meltdowns from Jay, and made the call that would change everything!

We met with a lovely lady who was a Social worker for the Disabled Services Department from the council and from the start she made me feel comfortable with the process of assessment. The assessment not only  took into account Jay’s needs, but also the needs of my two older teenagers, myself and my husband! She said that the whole family matter when it comes to accessing support . She explained that a Parent who has time away to breathe and to rest comes back doubly strong to handle whatever  Autism throws our way, therefore the child is cared for better. It acknowledges, that what we do is different from normal parenting! We are not just Mums and Dads, we are Carers! And Carers work 24 hours a day! So to keep children and families safe from over load and too much stress, which can really affect your health and the child’s, they provide budgets for families to either use to have time away which is called’ Short breaks’ or to refer on to the Disabled Children’s Team who provide long term year round support. This is mainly for severe cases and we qualified. Jay’s condition had become more complex when he turned six, with full blown severe OCD (Obsessive Compulsive Disorder traits) kicking in, high end constant Anxiety and severe life debilitating Phobias that completely ran our lives and his. So, we received a budget from the County Council, to use for Respite provided by the Charity group  I mentioned earlier, to look after Jay at times, either in the home or out on trips organised by the group. This was all funded by my awarded Budget. This is the way it is- these budgets can be life savers, and the biggest event not long after we received this, was a development in my own health which left me with a debilitating health condition which affected my mobility, and caused constant chronic pain and fatigue. I only mention this because I now required help for more reasons than before as I was so ill – and required rest every day to prevent awful flare ups happening that meant I could hardly look after me let alone Jay. So, that phone call I made that day to self -refer was obviously meant to be. The support we have received helps me, but most importantly , it enables Jay to safely explore the world around him with other people as well as us. You see, before this, Jay would meltdown in every single place we took him to, due to his Phobias, OCD and Anxiety, meaning distress for him and my other children too, and it became impossible for us to go out without extreme reactions from Jay. The reason the respite supports Jay is because when he goes out with the charity he does not react in the same way! Just like in School, he ‘holds it together’ for them, only to meltdown on his return to us. Therefore, Jay is able to see the world calmly and without reactions. We are his ‘safe people’ and for us, he would go in to a Meltdown, yet for them he would not. Therefore he was getting experiences he would not have got with us. We have to understand here the effect of Delayed Processing.  Jay would go out with us and react immediately or later, yet for the Respite workers, he forgets that and processes things in the day later on. These children, are often in distress in the outside world, and trips with Parents are often full of Anxiety and Meltdown. These children require someone other than their Parents to show them the world.

Let me tell you something here!

To actually allow your precious child to leave you to go on a trip with someone else is very hard-and for those of us like me, that adore their children and prefer to care for them ourselves, there is a certain amount of bravery and selflessness that enables us to put that child’s needs before our own. For reasons that are hard to swallow, my son needs to be without me at times in order to function outdoors. With me, he would always meltdown- I was the ‘safe person’ and therefore I have had to let go of the feelings that come with the fact, that my boy can not cope or stop going into meltdown when he is with me, but does stay calm for others who he has to care for him through Respite care. It is similar with School. The Delayed Effect is actually being studied now and certain Professionals are being made aware of it. It is what makes our Special Children hold it together in School or with Respite workers and then eventually let it all out to us the ‘safe people’

If you decide to progress on to more formal means of support such as County Council SEN budgets, know that you are doing it for more than just a break! Of course it is a break and that is nice, however the real reasons go far beyond that. The service is called Prevention because looking after a child with severe Special Needs is stressful and  tiring! Sometimes people are going without sleep due to their children not sleeping which is common in Autism especially and are exhausted. An exhausted Parent is not much use to any child and these children need help, and sometimes that help I am afraid needs to come from Professionals, and letting them in to your home and life is hard at first, but just like everything else you soon adapt and one day you may say “what did we do without this amazing support?” I can honestly say Jay is so much happier when he has been to a Sensory room or a hydro pool with his charity than if he was home all day consumed in the Anxiety, OCD, and Phobias that go with his condition which is : Low-functioning Autism and Global Development Delay.

Please, never , ever allow any other Parent to shame you for accepting help. If they do not want it that is fine, but many parents of kids with SEN admit to having high stress levels, lack of sleep, tiredness which can be sometimes debilitating, and they need a break!! Don’t ever feel bad for being human! We are only human and its blooming hard to care 24 hours a day every day for a child with severe conditions and a break is good for both you and them!

We love our beautiful Special Children! I love my Jay-he is wonderful, special , unique, and fills our life with happiness-we just need some help sometimes!

 

 

Next Time: Low end to High end – Differences and Similarities -Jay’s Two Year Old mind in his Eight year Old Body!

Meltdowns! All about the Autism Meltdown!

 

 

Looking back over Jay’s life so far, I can honestly admit, that the most frightening part of the  Autism in Jay, has to be the Meltdowns!

Before I knew what was causing these meltdowns way back when Jay was three, I was so afraid of the reason why my adorable son would change in a split second , to an angry shouting screaming mess! This blog is never going to skate over the real deal that Autism is! They do not call it a disability for nothing!

So many of my friends would say comments like ” my child has meltdowns when they can’t get their way” and I would sigh quietly , becoming frustrated that they just do not understand. An Autistic meltdown is NOT a tantrum. Neurotypical children have Tantrums not meltdowns.  So, what is the difference?

A meltdown is a sensory and emotional response to a particular stimulus, that leads to a total shutdown, and inability to self regulate oneself without support.  It is completely all-consuming, it cannot be stopped or controlled in a child with Autism, and the child will continue the response, regardless if any one is watching or not. It is often violent, and is fed by extreme anxiety and an inability to calm oneself without intervention and help.

A tantrum exists only to get one’s way and is a normal part of all children’s development and usually stops by the time the child is able to self-regulate their behaviour and emotions and sensory reactions! This is around five years old.  A child having a normal tantrum, will stop as soon as the adult attention is gone. It is as simple as that!

Jay’s meltdowns when he was very young, and before diagnosis, were all consuming and so frightening for him. He had no language and no way of telling us what was wrong. He had many triggers at this young age which included busy crowded places, Weather changes, Thunder, noise, Television shows, especially Cbeebies’s  shows and visiting places he was not familiar with!

These early meltdowns would start with Jay becoming more and more visibly anxious and would crescendo into massive screaming fits where Jay would hit out at us and run away and hide whilst screaming loudly!

As he grew older and acquired more language, he began to be more verbal. His meltdowns changed too. They became sudden angry bursts of panic where he would say phrases over and over again such as ” I’m scared” He would shout at us to “help him” and he would shout “I have to hide” as he ran around the house screaming trying to find a place to get away from the all-consuming fire he was feeling.

At this stage of a meltdown a child needs help fast! They cannot self-regulate! Let us always remember , as Autism Carers, that the child is completely unable to come back and gain back self control. What actually is happening , is a physiological response in their bodies which they cannot stop or control. The length of the meltdown varies, yet it always results in complete exhaustion. A child who has had a meltdown due to Autism, will require a ‘safe space; to go in which to calm down and rest after it has happened. We began to provide dark dens at this stage and tents and covers, where Jay could go and recover. He would ‘envelop’ himself in darkness to find his way back to normal calmness and this would take hours at times!

These meltdowns are so hard to witness and even harder to combat. We can help though! I mentioned last time how I keep my own emotions in check. Well, this is so very important during a meltdown. We must be the ‘ calm’ for the child. If we get upset or shout , then that child has not only their own meltdown to deal with, but also our emotions too, and that is just asking far too much of them! They simply cannot be asked to process our emotions too, in a time when they cannot even regulate their own. A child in a meltdown, requires a calm, in control, quiet adult to lead them back to a regulated state in which they can recover. They need time to do this and should be given space . However they must also be kept safe. Some meltdowns can include self-harm! This is so very hard to admit for parents of children with ASD, but we must admit it if we are to gain more understanding from others. Jay went through a stage of hitting his own head against the wall, and as you can imagine this was really hard, as I had to keep him safe from himself. I began to hold a cushion between the wall and Jay. You see, Jay was ‘sensory seeking’ during his meltdown. The banging his head provided a feeling other than the meltdown to register in his mind, and so by doing this he was trying to defer from the meltdown intensity. Many would say just stop him. Well yes of course that would be the first point of action, to try and say no- however, trying to stop the child from sensory seeking during the meltdown can be detrimental as they can then turn to you, the carer and use the physical action on you. The best thing to do, I believe is to find a ‘ safe way’ for the child to seek sensory stimulation in meltdown, in this case the cushion made the physical action safer. If a child is biting during meltdowns, you can buy chew toys and sensory sticks to defer the child from biting themselves or others. This way, you allow the child to do what he needs to self calm, yet, at the same time you keep the child and others safe!

Providing ways to prevent sudden violent meltdowns is also a cause of action. Many meltdowns are triggered by sensory reactions and so providing ways to de-sensitise them is really important in preventing meltdowns in the first place. If the child is reacting in busy public places, then provide them with Ear defenders to zone the noise out and regulate their sensory systems.  If the child shuts down in public and you cannot move them, then provide a SEN pushchair. Go forward with your child, safe, and feeling calm in their buggy and try to ignore people who stare because your child is too big for the pram! I advise complete and utter ‘focus’ being on the child. We are their Carers, not just their parents. WE have a job to do! We must try to keep them calm in this busy world, any way we can, and the judgements of others need not affect us because we are amazing, and the job that we do is precious and means something huge, so the judgers can go take their comments and stares back with them! Learning to only focus on your child in public, during meltdown is one of the hardest things we have to do and if we can rise to that challenge and be as strong as we can be, then we are a force to be reckoned with! Just believe that if you can master this you are a warrior for your child!

I remember at one stage Jay had to hold a cover over his face whilst in his SEN buggy. It really worked. We also applied to the Family Fund, and received an award to purchase a ‘Squeeze vest.’ This provides gentle pressure whilst inflated which is proven to help sensory regulation, hence preventing meltdowns. Here are a few pictures of Jay with his vest and tents and dark dens -all ways in which we have helped him stay calm

 

Wearing his ‘Squeeze vest’, Ear defenders, and Sensory Dark den and lights.

Now I would like to ask one thing! I wonder whether people, after reading this STILL believe a meltdown is the same as a Tantrum? Or that Autism is not a disability? It blooming is a Disability, but it is also special too!

Mmmm hopefully I have put paid to THAT myth!

All these ideas I have learned along the way and I sincerely hope I will help somebody starting out, as I had no one except one friend who REALLY knew what I was going through! So, I give these blog posts to all the carers out there who need a helping hand on their Autism journey!

 

Next time; Life before and after Diagnosis- Support and how to acquire it! 

Jay’s Term Time versus Holidays- Coping with Transitions!

 

So, here we are at the ‘ Summer Holidays!’

It is a time of fun and happiness and trips out and playing with friends and enjoying the Summer sun!

Yet whilst everyone is enjoying their Summer, there are group of Parents who are struggling and going through a very hard time with their children at this time. These children have one thing in common-they are children on the Autism Spectrum

Ever since I can remember, Jay has had problems with life’s transitions. The most profound of these has to be the transitions year round of Term time to Holiday time! He simply cannot compute it or process it in time to handle each change. So, when he has to go back to School, he will take a fortnight to settle back in and stop having Meltdowns each day because he has to go back to school. Likewise, when the holidays begin, Jay will spend the entire first week having Meltdowns, Anxiety and crying a lot, and its because of the Transitions! Once he has come through the first few weeks of the Summer Holidays, he will calm down into a new routine, although the Anxiety does continue throughout the Holidays because of lack of routine. School life brings a solid clear sameness of routine, which a child with Autism clearly responds to. However, the holidays are different. No matter how many routines I try to add, he will still meltdown and have Anxiety-I try to do my best to create routine and help Jay!!

In my last Blog post I talked about ‘low demand’ and this is also the way we deal with this onset of Meltdown and Anxiety, which happens in the first few weeks as we see Jay attempting to process the change. We keep demand low and this is following the advice of a Professional.  It really does help because as Parents we are tempted to get going with the Holiday fun at the very start of the Holiday! Sometimes, just allowing the child a peaceful, quiet start to their Holiday can reduce the level of intensity to the responses the child has. We have tried and tested this method these Holidays by actually making the mistake of a trip on the first day, which we very much learned the hard way that it was too much too soon and we retreated back home fast!

The last few Summer Holidays have been a mixture for us. Some good days happen and some bad days. However much we try to make it as wonderful as possible, we still see many hard days with Anxiety levels being high and Meltdowns frequent.

We use our Now and Next board to ensure Jay knows what is coming next each day, and I use this every single day and I cannot recommend them enough. Part of the issue with Transitions, comes from not knowing what is going to happen. This makes children with Autism anxious and unsure and if no support is given in the form of visual aids , it is going to be doubly hard for the child to stay calm. The Now and Next board is negotiable and can be changed with the child at the centre of the decision making and with the adult clearly showing to the child any change of  plan, in good time to allow the child to process the change. When people think of Transitions, they think of the big ones, such as changing class or School. The transitions I refer to, are the daily elements we all do each day, and the changes to parts of our life that happen to us all. Any of these Transitions can set off Anxiety and Meltdown in Jay and many others. I am afraid that no matter how brilliant we try to be and the devotion we show as Carers, we cannot take this away and the full impact of these daily Transitions, are going to affect the child. All we can do is put in place certain ideas, that help the child to cope better with it.

We are at the end of the first week of this Holiday, and Jay has had four Meltdowns, and has been anxious about the Thunder Storms we have had this week and also the hot weather. Today, I decided to allow Jay a quiet day at home and we have done lots of activities to keep his  mind occupied.

 

Above-Dot to Dot drawing, Computing, and helping Mum dust!

I have a large family , and they all speak of the Holidays as the best time, and they wander around on trips every day and are able to go where ever they like! This is what my life was like when my older two were young. With Jay, we just cannot go to busy family days out in places families go in Summer.  I am going to admit it to my readers , – I find the summer holidays long and hard work and quite often lonely, as I cannot meet friends to do the things they do with their neurotypical children. Jay and I make our own happiness by enjoying each other’s company, doing simple days and simple every day tasks together, and walking around in Natural places that are quiet and calm. I love these times with my adorable boy, but I am not ashamed to admit that the constant crying, Anxiety and Meltdowns, which come with Autism, get me down and I have to fight all the time to keep it together and not cry myself, when I see him break down. I would not be much use to him if I did cry too! I keep the emotions for night time when Jay is sound asleep and dreaming of his beautiful world. I just do not think that anyone with regular children have any idea what is it like to have children with Autism in the long summer break! If only more Mums were more understanding and less judgemental of behaviours and Meltdowns, we, the SEN mums, would perhaps venture out more to places others go, yet we do not live in that world yet! I would love to see a world where Autism was accepted and valued and NOT judged by mums who quite frankly have no idea what it is like. I do not resent them for that as they cannot help that, however they could be more understanding and less judgemental-yes that would be good! For the moment, I have a very routine based day with Jay, in which each transition is clearly visualised and warnings of any change are given to him, in a way he understands. I also qualify for a lot of Respite care where I deliberately choose trips for Jay that are Sensory based, such as Sensory Rooms and Hydrotherapy.   I do not choose trips that are in busy places anymore, because Jay cant handle them. The Sensory trips are to emulate Jay’s SEN school environment as I can clearly see that one of the triggers for Meltdown in the Holidays, is Jay’s lack of access to Sensory provision. He has access daily to this at School and clearly misses it in the Holidays so his Respite carers provide this for him. Jay is so much calmer on the days he returns from swimming in a Hydrotherapy pool or time spent in a Sensory Room so it is obvious to me that is what he needs!

Later in the summer, when Jay is becoming used to his new routine, the time will come for yet another Transition! The return to School life in September! Then, the endless rounds of Anxiety and Meltdown will begin again, as Jay desperately attempts to process the newest change -the adaption to the School day after six weeks of no School.

Life is full of Transitions! I know this! When the time comes for us to leave a place we are in, we say ” Five minutes Jay , then we will go”  When it is time to go we will say the same simple phrase ” Time to go Jay” So, we give a time related warning or a countdown, then an ‘absolute command.’ The phrase, ‘ Time to go’  is absolute because it is not debatable it means ‘now’ We have found that if we say “lets go” or something like ” we are going,” they just do not work. Only a clear, concise, absolute message will process in Jay’s mind and he then responds to that and comes away calmly too. We started this three years ago, because every time we told Jay we had to leave somewhere, he would go in to a meltdown. In the presence of many onlookers! Counting down the time, or giving a number that is time-related, helps the child get ready for the transition or change, and giving the command will help them connect it with the time scale they had. We find it works and we have used it constantly for transitions for three years successfully.

Five more weeks to go for this summer Holiday and by using all the strategies we have in place for Jay,we will hopefully help him and support him, throughout the Holidays and the through the Transition of School beginning again! I go forward with a positive attitude, and a warm caring heart for my little solider,who quite honestly in my mind, is a brave soul who shows bravery and strength every day as he moves through his life of Transitions in his Autism Universe! Love him so much!

 

 

Next time:   Meltdowns– What is a meltdown? How is it different from a Tantrum? Why do they happen and how can we help? -Finding the triggers behind the Autism Meltdown!

 

Dispelling Autism Myths-Finding out the truth about Autism

 

 

But they don’t give eye contact do they?

They don’t show empathy do they?

They don’t like being with people do they?

 

I could go on! The above list is an example of some Autism myths I have heard over the years from all walks of life including Professionals!

I was always told that to believe everything one hears is to be a slave to another person’s agenda!

In life, we often hear something and because we do not know any different, we instantly believe it!

In regards to Autism, it is especially true because you will probably find that,wherever you go, people think they know all about it! Often, what they do know or think they know is completely false. It is best , in cases like these, to find things out for oneself by speaking to people who KNOW! Who knows then? The best experts on Autism are the people who spend every day living with it. Either the person themselves or the parent or carer-these are the people who really know what Autism is and how to live with it, in a world which constantly tells us what to feel, how to think, and what to know!

The truth is, that there are no rules when it comes to Autism. If you have met one person with Autism, then you have met one person with Autism! That is what they say, because every person with Autism is unique!

Whilst writing today’s post , I am reflecting on the journey that has brought me to this point, where I can write about Autism from a personal point of view. However, the Autism myths out there desperately require addressing and the acknowledgment that they are actually just guidelines, NOT fact!

For example- the myth that most people readily are told and believe, is about eye contact. I hear so many people say to me things like ” he cant be Autistic because he gives eye contact to us”  Okay, so maybe the child does look at their parent, but just check how they act around people they do not know, or people who will make demands on them, ie Teachers.  Do they give them eye contact? Let us flip the coin- does a child like my Jay, always refuse to give eye contact? He is Classic Autism ( low-functioning) so he must NEVER give eye contact right?  No, actually Jay will give his close family eye contact, he gives the camera eye contact, and also if someone has said something or shown him something that particularly interests him, he will give that person full eye contact. Whether or not a person gives eye contact will depend on factors, such as , where they are, who they are with, or what the person is doing. FACT– many children and adults with Autism feel uncomfortable when sustaining eye contact and some say it hurts them to give pro-longed eye contact.   However, it is not a fact , that ALL people with Autism cannot give eye contact-they can, in certain circumstances, but, it can be that they find it a hell to do so!

    Giving beautiful full eye contact to the camera comes natural to Jay.

 

Showing Empathy to others- another Autism myth! So many people believe that people with Autism do not show or have empathy. It is just SO not true! My sweet boy is not able to tell me he is feeling empathy or show me, as he has severe communication difficulties due to language delay and Autism. However, ever since Jay was a child of three, he would, when reading stories or watching sad parts in films, express concern by saying “aww he sad aww!!”

When ever I would say the word No to Jay, he would stroke my face and make a sympathetic noise and focus his eyes on mine, to let me know he knew I was upset. I now do not say the word no, and have not for five years as it upsets him -not because he is in trouble, but because he thinks I am hurt in some way. I now say to him ” lets not do that” or “we must not do that.  I believe Jay reacts to No because it is a negative word, and never has a positive vibe. Using the other phrases instead, helps Jay to understand that something is wrong, yet I do not want Jay to become anxious because I have said No. Ever since he was very young, hearing No,  he has cried hysterically and stroked my face making sounds of pity and saying ” its okay” over and over to reassure himself and I, even though I was fine. I can conclude that something about the word No distresses him in an unusual way. Maybe he has TOO much empathy because he seems to think that there is something wrong with me-that I am distressed.

FACT– people with Autism can feel empathy, they just do not know how to express it as they have communication difficulties. FACT– they do struggle to understand things from another person’s point of view-this can seem like they are not showing empathy. Jay has low functioning Autism so his developmental age is two so we really would not expect a two year old to show empathy, so a lot of it is to do with the child’s development. If , like Jay they have severe delays, then empathy may well have not been developed yet in their brain, however, to categorize every child or adult with Autism and say they don’t feel empathy is really unjust and unfair, because they all have strengths and weaknesses just like everyone else does!!

They don’t like being with other people?  This again is only partly true! It is a very real struggle for people with Autism to “fit in” and “conform” to Social norms, and to make relationships. However this does not mean they cannot or do not want to. I know from experience, that Jay makes every effort to play with and join in games of children who do not have Autism and he will try his best to make it work! Yet it is true he prefers his home environment where he feels safe and no demands are made. He prefers the many soft toys he owns and he makes friends with them and talks to them and enjoys their company! In the case of children and adults with Autism, they want very much to make relationships and be part of other people’s lives, and to feel a part of things and included.  FACT– having Autism does not necessarily mean a child or person wants to be alone. It just means that it is so much harder for them to make it work with someone and to be accepted!

The Media, and even some Professionals, tell you these so called facts about this complex condition, and most people believe them, until they get to know someone with Autism. This, potentially will throw out of the water, all the things you ever thought you knew about the condition. Instead of assuming and pre-judging people with Autism, I say, let us get to know the real person underneath and give them the chance to show they CAN do these things with some support, and are capable of learning skills just like everyone is! I say, let’s find things out for ourselves from the experts, which are not, in my humble opinion, the Professionals or the Media. No, the true knowledge of Autism and how it effects the person, lies in the minds of the Carers, Parents, Family and of course in the person who has the condition. Let’s listen to them because THEY really know!!

 

 

Jay’s Term Time versus Jay’s Holidays- Coping with Transitions. 

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