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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Changing the Way we Parent a child with Autism- Improving quality of life and behaviour.

 

Placing a child with Autism in to a high demand situation, will almost always result in the child reacting in a negative way!

 

The reason for this can always be found in the response. The child will respond to high demand, by producing a sensory and emotional reaction, coupled with a behavioural response, that clearly shows they are feeling un- safe or scared or over-whelmed at whatever situation the particular adult or child has placed the child in! Too much pressure placed upon these uniquely formed minds, is a sure fire way to walk down the ‘ meltdown’ path!

Of course, when Jay was younger when we had just discovered his Autism, I knew nothing of all this! The paragraph above is the direct result of years of experience!

In the beginning I was not going to change my life! I was going to carry on and expect Jay to fit in and nothing was going to stop me going to the places I wanted to go and events I wanted to attend! I soon learned the hard way! Trips and visits to over crowded places always resulted in full blown meltdown in Jay, tears and physical shut downs happened before our eyes, as our child turned from an adorable child , in to a crying , shouting physical mess! I do not recall the exact moment the elusive concept of ‘change’ began to creep upon me and I certainly did not listen to begin with, however after many times these meltdowns began to get so bad we sought help from an OT! This was the summer of 2015.

Jay’s OT became my first teacher. She really made me understand how Jay was actually seeing the world. The most helpful advise she ever gave me, was to change the way I do things with Jay. The OT gave me ideas to de-sensitise Jay. I have spoken before of his Ear defenders and SEN buggy and caps and dark glasses-all these things helped to calm him whilst outside. Even wearing a Lycra top helped Jay feel more calm-we took it all on board and were very pro-active -we really wanted to help Jay so much. So we did everything we were told!

Then, in 2016 we began seeing the  Child Psychologist who diagnosed Jay, who was a specialist in Autism. He began to change my whole way of looking at things! We, his family, were trying to find ways to help Jay be able to cope in public and busy places and to help him stay calm, yet the one thing we were missing was the solution to truly free Jay from his sensory prison! It was something we had never even considered or realised!

The Psychologist said to me one sentence. ” Just do not place the demand on him in the first place!”

Many places around the world have different attitudes to Autism and many of these countries have awful treatments designed to “train” the child to not be Autistic. The only reason this is done is so the child ‘conforms.’ It is not for the child’s benefit because the child is just doing what is natural to them! It is purely so the adult does not have to change their life in any way to accommodate the child and their disability! Maybe that’s harsh or some may disagree and that is fine, but to me the words of this Psychologist rang out in my mind and I realised that to de-sensitise was honourable and did have an effect on Jay in a positive way, however just doing this was not going to stop the meltdowns, because it was clear that we were expecting too much of our boy!

So, I made a decision! I was going to assess each activity we did both on weekends and in holidays, and if it included ‘high demand’ situations I would cross it off the list! Instead, we began to take Jay only to natural places with no people or noise for leisure time as a family! We went on quiet picnics, played in streams, walked through quiet woods and on quiet beaches and we only saw one person at a time when meeting up with people. We did not go to children’s parties unless they were family or very small ones, and we also gave Jay the choice in what he wanted to do or better still, what he felt comfortable doing! This strategy began to pay off very soon! No more busy shopping centres, no more busy playparks, no more children’s farms covered with visitors and definitely no more mixing with large numbers of friends! Perhaps some of you are reading this saying to yourself “yes but then you are giving in” -that is fine to think, yet if we are to help these children to feel accepted and valued as they are, NOT, as we would make them, then we must accept their inability to participate in what we neurotypicals think of as normal and the desired way of life then, and only then, will we have achieved true “Inclusion”

Inclusion is not the way we place children with Autism in the same situation as neurotypical beings, it is the Acceptance of difference and of valuing that not everyone is the same! By not taking Jay to these situations, I am not spoiling him! Instead I am honouring what he CAN do, giving him respect to decide for himself if a situation is too much for him to handle, therefore I am truly listening to my child’s emotions and feelings, which is a very difficult thing for some adults to do!.They feel they need to have full control over their lives and their child’s. I no longer feel that way! I see clearly now, that the reason Jay was having very bad meltdowns and crying and saying he was scared, was because, he was scared!  His disability means he cannot cope in the same way Neurotypicals can. Why should I force him to? Shall I change him by force? Is that right? I don’t think so! I believe in freedom so I will give my child the freedom to choose his life and I will adapt mine accordingly in order to help my son stay calm in this loud world, where everyone has an opinion about what we all should do to conform! I say, let’s break free from chains and what is ” normal” and celebrate difference and respect these children and adults for who they are, and not what society tells us they should be!

 

 

Next Time  – Dispelling Autism Myths- But they don’t give eye contact do they? Or show Empathy? Finding out the truth about Autism!

How to help children with Autism Learn through Play- Social Stories, Sharing Strategies, Identifying their Schemas and learning through Repetitive play

 

Changing the way in which we play and interact with children with Autism is essential for their development. If we were to play with them in the same way we play with children who are Neurotypical, we would soon realise that they cannot learn that way!

 

When Jay got to two years old, I tried playing and interacting with him, in the same way I had with my older two children. Back then I only knew he had delays. I did not know he had Autism, so I just assumed he would enjoy similar games such as Thomas the Tank Engine and Peppa pig. Every time I tried to initiate play he would completely ignore me! It was literally like I was not there! For a while, I put it down to his delay and I continued to blame this, right until I realised he was Autistic!

Jay enjoys many games and still plays at Eight years old, in the exact same way as he played at Two. This is because of his Development Delay. However over the years I have seen a clear pattern in these play times, and the most obvious and continuous pattern, is his inability to allow others to enter his play, and control his play.

Jay started playing at Two, with games that involved the characters he loved from books and Television, such as Thomas and Peppa Pig. Yet he did not play in the “normal ” way expected of a child this age. Instead, he would place the toys in certain places, and move them around in a repetitive manner and I noticed he would do this the same way and in the same order each time. Then, one evening, I was sitting with Jay’s Dad chatting, when we realised Jay was moving around the living room in a strange manner. He was actually tapping each of his toys in turn across the whole room! He then continued to do this round and round about fifteen times in total. The next evening he repeated this and so on, until one day he just stopped doing it. So here in this little story is the first element with play in children with Autism- Repetitive play!!

To truly interact with the child we must first and foremost accept the way they play as the new “norm” Because to them it IS normal. I had to also accept this before I could truly enjoy playing games with Jay. Once I did I began to adapt the manner in which I joined his play. Instead of speaking and talking through it, I began to “shut up!” I allowed Jay to totally lead the play. As adults we are tempted to enter the child’s world by “talking” through the play! Yet if we just stopped chatting for a moment the child themselves may venture a comment or two! Why is it, we adults just have to be in control? Is there a deep down need in us to have complete and utter control over our children and their imaginations? I learned that the easiest way to be there for Jay during his play times , was to simply sit by him. Wait for him to ask, or to speak, or to simply place my hand upon the toy he wanted me to move.

What Jay was actually doing, was learning through his repetitive play! Without the repetition he simply could not learn. He could not process. He needed the pattern and the continuous stories to take in what he could from the play.

There was always a lack of Imagination in Jay’s play, and this will be seen in other children too with Classic Autism. Jay would speak whilst engaging in a game of small world play, however the story would be a story he had seen or read with me. I have never seen him conjure up a story of his own. This is because he does not have a developed Imagination. So, what does he do? Instead, he memorises stories in his mind and then recreates them with his toys. In some ways this is very clever, as it takes a perfect memory to do this which Jay has, and he uses it well! It is his memory that saves Jay as without it his delays are so significant I doubt his play would be much if not for his super advanced memory skills! So, there we have the second element with play in children with Autism- Memory.

Many children with Autism have early childhood “Schemas” The definition being ” a pattern of thought or behaviour, that organises categories of information and the relationships among them”  Jay would use the Schema as a way of organising his world. He demonstrated many forms of Schema in his play at Three years old, and these Schemas were repeated over and over during his time in pre-school and at home. It has a lot to do with organising and following a pattern and Jay’s most common one was, “Trajectory” Schema. He would line up objects for hours, and crawl through crates which he had lined up. He would move along lines he had drawn and constantly drew lines on paper and on ICT monitors. Another kind of Schema he demonstrated was ” Enveloping ” Schema. He would seek out material to crawl under, hide under and cover himself with. He would climb fully in to boxes and would stay for ages just hidden. It was funny at the time, yet when I realised it was a pattern of behaviour I researched it and realised it was not only playing using Schema, he was repeating the Schema again and again. Not all children who play using Schemas go on to develop Autism but it is very common in children who do get a diagnosis, especially Classic Autism.

Jay using Schemas during his Early years play

 

So the Third element of learning through play in Classic Autism is Schema.

I soon learned many other ways to help Jay learn through HIS way of playing. Many children including Jay find it hard to share, and for children with delays and Autism, it can be so hard for them to get the concept of sharing! I decided to use a strategy I used at my work in Early Years, called the “First and Then ” Strategy!  It worked for my two year olds at work so I began to use it for Jay and so far so good. When I say to Jay ” First this boy will play with the toy ‘ Then’ Jay can” he completely responds and will then wait for his turn. I use it every time we go in to public play areas or public places where sharing is required.

Lastly, I will share one more strategy. In order for Jay to make sense of the things that happen to him both at school and home and out and about, I use “Social Stories” and these are suggested by many Professionals we have seen. They really work! The fun part is coming up with the stories in the first place, and then incorporating the situation you are trying to help the child understand in to the story. I use Jay’s favourite teddies the two Spiders- Crawly and Spinney who are Jay’s best mates and mean the world to him! Spinney and Crawly usually get up to some mischief in the story which immediately will engage Jay and from then, I include the worry he has or the situation he has been in. It is fun, and it is a wonderful way to really connect with your child’s inner emotions and I love using them! Try it! They work with all children and if more parents used them children would understand the world better and how to relate to one another and plus they would have a good laugh and some fun and that is what should always be at the centre of every child’s world!!!

 

 

Next Time: Changing the way we Parent a child with Autism- improving quality of life and Behaviour

 

 

 

Living with Classic Autism and Global Development Delay.

 

Somebody once told me to take this Autism life one day at a time!

That was good advice! The minute I begin to analyse, worry and fret, I lose control of my thoughts and I panic which is no use to anyone! The only way I can deal with the huge commitment of caring for someone their whole life, is to face it bravely one day and one step at a time!

Until a person is thrown the curve ball that is Autism and a severe Disability, they cannot understand how huge it is. The very fact that your child will never be independent and will always need caring for takes a lot of getting used to and acceptance! The very best of people would react, because when you have a child, you expect they will eventually grow up and live their own life, and that is what they should do.

Of course, my lovely boy whom I could not love more than I do, is my greatest achievement along with my two older children, and there is absolutely nothing I will not do for them. So,  after a period of adjustment and acceptance, I finally got down to the task in hand, which was to be the main Carer of this delightful little boy called Jay! I never realised how exciting it would be because every time Jay achieves something it is so very wonderful as I have waited so long to see him get there.

Most mums will hear the word “Mummy” at around 18 months, and this is a watershed moment in any mother’s life. Yet imagine if you had to wait until your child was six, before you heard the word that no one ever forgets, for the first time! Jay was six before he actually turned to me and said this word and it meant everything! Up until this point, I never knew whether I would ever hear it! My feelings were indescribable! Pure happiness radiated through me and I at last felt hope that Jay may talk to us.

Alongside Classic Autism, comes Global Delay in many cases. Ours was one of these. So really we never had any guarantees that Jay would accomplish any of the skills other parents may take for granted their children will learn.

Jay left his mainstream school in 2017 not able to read or answer or have a conversation. I was told by his Doctor he may never read. He now is beginning to read! He was also honest and said Jay would always need caring for. Many people have said to me things like “oh maybe he will be okay”  No! It is not me being negative, it is me accepting that it is what it is!  The doctor said children with classic or low Functioning Autism and Global delay do not catch up and will always need a carer, yet this will never mean we give up! I will always work hard to ensure Jay meets his full potential, but I also have to be practical and realise that he will need me as an adult to care for him too!

 

One thing all the above pictures have in common is the smile! For every photo I take of Jay, he will always have a smile on his face! This only changes when he is facing the challenges and anxieties of every day life.

Our days are often the same pattern and follow rigid routines. We have to do this in order for Jay to feel calm and safe. If we move these routines for any reason we must give Jay a warning. We must prepare him for the change and in good time. When a change to routine happens unplanned or unexpected Jay will react and go in to a meltdown. He does this because the only way he can cope with this world , is to have complete control of his environment and his life. When that control is taken away because of  unexpected events, he can no longer cope and does not feel safe and so he will become very anxious and this anxiety leads to a meltdown. We all know that complete control in life is absolutely unobtainable! It can happen at times however things will always happen unexpectedly and without warning. All we can do for Jay is provide as much stability as possible. We plan ahead, we prepare him by using pictures and now words. We explain simply to him , what will happen and why and sometimes this is enough to prevent a meltdown, sometimes it is not, and he will still shut down and react.  One example I can give, is when he was five and he would want the same song on in our car, over and over as a way of managing his school run anxiety. The repeating of the song calmed him. This is because children with Autism love repetitive things and predictability. It gives them the element of control. One day, on the end of our school run, his song was playing and the stereo broke and would not play. I was driving and so I could not sort it and in the back of the car Jay began to get anxious! He then began to cry out, ” play it , play it. ” I explained in simple sentences to help him understand but he continued to scream out. By the time we got home Jay was in a meltdown. I quickly walked him in to the house and sat him down, and he continued to scream out the same words, ” fix it fix it ” Because of his delays he could not understand my explanations and because of his Autism, he no longer could regulate his emotions, because the one thing he relied upon, on the school run, was this music and it had failed him. The feeling of no longer being in control, and the anxiety that his Autism gives him in these unexpected moments, had caused a severe shutdown where he could no longer see anything other than the fact that his song was gone!

These extreme reactions may be seen by anyone in public places anytime. Please can I ask that if you , my reader, ever see an Autistic person of ANY age reacting like this , please do not stare and please do not judge, as it is very real and is completely beyond the person’s control. They are not being disruptive or badly behaved. They are not having a tantrum-they are instead incredibly distressed, unhappy and scared-that is the biggest reaction! They are scared!  Please be kind!!

When life is calm , the days are lovely with Jay and I fully enjoy them. When life goes wrong, and in Jay’s world this can mean merely weather changes or too much noise, days are challenging and sometimes, I will admit, unhappy! We never know which it will be and this why we take it a day at a time. Sometimes after a bad day, Jay will calm down and be okay , sometimes he will carry on being anxious the next day and beyond.

Briefly I will talk about other elements of the delay Jay has. I have to prompt Jay to do everything. Washing hands , getting dressed, cleaning teeth, eating, drinking, all these everyday self-care things we do automatically and we teach our children to do, do not come naturally to children on the Spectrum at any place on it. Even high functioning children need these prompts. For Jay, these are the elements he will need help with going in to the future. He also can not ask for help. He does not know what to do if he gets lost ( which I wouldn’t allow) or how to stay safe. In fact, he has no safety awareness at all! I tell him every time we cross a road about cars. The next time we cross he will have forgotten as his brain cannot process it and retain information when needed. That is what keeps us safe! The ability to retain important information whenever it is required is how we learn, and how we survive. Jay is Eight years old and does not know how to stay safe! He requires me to keep him safe! I do not know whether in the future Jay will develop this brain retention of information that would enable him to remember important safety awareness or whether I will always have to keep him with me, holding him, but this is why I cannot think beyond the next day! The thoughts of the future bring me down, take essential energy from me, which is vital to what I need to just get through the present day! You could say no one knows the future yet. However, with neurotypical children, if nothing happens to them, you generally know that they will become competent adults and will have the life skills required to survive in our world. I cannot say that! I know that my son cannot survive without a carer ie Me!

Jay is so precious and loved and has parents and family who understand his needs so at least I have the peace of mind that he will be happy, even thrive, with the right support and love and with the special education he is receiving, maybe he will meet his full potential whatever level that may be. We will do our upmost to help him get there on our Autism journey together!

 

 

Next time: How to help children with Autism Learn through Play- Social Stories, Sharing Strategies, Identifying their Schemas and learning through Repetitive play.