Communicating, comedy, sensory reactions and laughter.

We’ve had a bit of an unprecedented week, it was filled with accidental events, which in Autism can cause double the stress they usually cause.

The main two were firstly, the car not starting, resulting in a two week loss of car, and a loaner car, which threw Jay way off, as he couldn’t understand where his black car was. The second was a power cut to only our home, which lasted 4 hours in the evening and so it was dark, and was caused by our black box. The fault took 4 hours to find by the responder, and the thing is, is, that for regular children this is quite challenging, but for children with Autism and delays like Jay, it causes long lasting anxiety and distress. Imagine you found yourself in the dark but unable to compute and process what has happened to the light? Imagine then, that as a result you now think that the light will go at any given moment because you cannot compute or process what had happened? How scary would that be? That’s what literally is happening now after the accidental event occurred, and now we have Jay with high anxiety and fear that his house will go dark at any time. Yet here’s the thing. I cannot promise Jay that this will never happen again because it might! Bad weather, storms and unplanned power outages can happen anywhere and any given time and so all I can tell Jay is that the electricity workers will fix it and have fixed it. As I explained this to Jay, I actually have no idea whether he understands or not. Today he said in distress”oh no the dark is coming back. ” This shows me that he isn’t processing what caused it and so doesn’t understand that it’s now fixed and won’t break again. I’m seeing a new phobia develop here. It’s got potential to escalate and that is what sets these delicate children aside. They suffer high abnormal levels of anxiety fear and phobias, due to their brains not being able to process all information properly. It’s what makes it a disability. I hear people saying Autism isn’t a disability it’s a different ability, and whilst I agree with the ability side I most certainly do not agree that it is not a disability. Yes it Is a disability and in Jay’s case it’s a severe one. Yes he has gifts, unique to him, but his condition means he cannot care for himself ever, so yes thats a severe disability. It just is.

The flip side is comedy. Pure laughter, as Jay makes us giggle and laugh so often. It’s so endearing to live with this little comedian. The funny things he says, and the delivery of the lines is so wonderfully comical, it lifts one’s spirits raises your vibration, mood and happiness and is what I treasure above all things in Jay’s wonderful character.

Because Jay has adverse sensory reactions to the world caused by his condition, we are able to access certain grants for his support. Recently Jay’s anxiety over floods has triggered more phobias, with him asking why there is water everywhere because he knows full well that the river water should stay in the river, not on the roads or fields etc. He couldn’t get to his favourite walk with rabbit Warren’s in due to floods and its preying on his mind and causing high levels of anxiety, agsin because he cannot process or understand why. So to support Jay we received a grant from the family fund agsin for sensory equipment. We chose items that support his sensory system and ease anxiety. We secured funds for weighted vests and zip up hoodie, which have weighted compartments which help to soothe and calm and regulate the nervous system which is much enhanced in children with Autism. We bought a weighted blanket which does the same, and I’ve tried it and it even helps with managing my chronic body pain I have with my health condition. Sitting under the blanket soothes Jay’s anxiety and can prevent a meltdown forming. This is useful because once an Autistic meltdown or sensory shutdown happens its harder to help them out of it. To prevent it from happening in the first place is much better and so these therapy items recommended by OTs are fantastic for supporting the child. Caution must be taken in regards to sleep. I don’t recomebd or endorse children sleeping in these vests or under the weighted blanket and neither does our specialist OT. They are only for using when the child is awake for safety reasons. The items always have relevant safety instructions with them anyway but I wanted to be clear on this. We also bought other sensory soothing toys and equipment, the grant was £400 and so we were able to get alot of things. I’m grateful to the family fund we have had a grant each year for 6 years. If you qualify on applying for the yearly grant I recommend them.

I’m also delighted that for the first time in his life, Jay is now wishing me good morning on awaking, and is saying “thanks mum and please mum” for the first time too. Its lovely to hear, although not necessary to me, as I understand Jay’s limits in communication, but I do secretly smile to myself when I take Jay’s snack plate away to the kitchen after school and he says “thanks mum!”

The small insignificant things are the biggest things in Autism! The wonderful daily leaps he takes fill my soul with a happiness and contentment I could never take for granted. Its a busy interesting and intriguing life, one I live to the full.

A year of exploring, creating and asking why!

As we see this year drawing to a close, I look back and reflect upon a year of happiness amongst drama, where my special boy has continued to shine his light, extinguishing the darkness and keeping our little world in the light! What has been obvious to us, is that our Jay had no idea of the drama taking place in the outside world. He remained completely at ease, calm and happy and thus we felt a calmness in his company in moments away from the world, and in the sameness of our days. A comfort in the normality that we insisted was kept in our home. When I look back in reflection on 2020, I see only a happy year. What went on beyond the walls of our home stayed there, and we found a happiness within our own life that was ours alone, and in that happiness was a freedom. A freedom that noone could take from us. I’m proud I managed to shield Jay from the worst of it and that to this day he has absolutely no idea. There is a freedom in that!

We quite literally spent this year having adventures together. We are fortunate to live near the North York Moors and forests and so many of our adventures took place in beautiful quiet places where we could escape and just be us. Forests provided Jay with an excitement as he searched for his favourite animals. Peter Rabbit and Friends stirred an interest in forest animals such as Badgers, Rats, Rabbits,and especially Foxes. From this, Jay would search endlessly on walks, for animal homes. He would stick his head in to the entrance to a hole, and would talk to the animals in there asking them to come out and see him. Sundays have been spent in creating beautiful images with paint of animals which have delighted Jay’s friends in his school class, as he shares pictures of his art each Monday. They encouraged Jay to talk to his class about his art, thus helping Jay’s communication skills and confidence levels. His teacher has said its the highlight of their day on Mondays and each child responds to Jay’s art with happiness. To know that our followers online also look forward to seeing Jay’s art also is much appreciated. Jay’s art is displayed in our hallway at home and is a much valued part of our home. His art projects are his own ideas. They are child initiated and reflect both his interests and his developmental age. In line with his developmental age being 3, it has been the year of questions. Why? This is the word I’ve heard more than any other this year. Why this and why that! I’ve had to have my thinking cap on constantly as he fires this question at me unexpectantly at times and man does he expect an answer and quick! Exploring our local area this year has resulted in us having a much nicer year, as usually in the summer we attempt various trips which quite frankly often end up more stress than they’re worth. Spending time together in simplicity suited us better and so summer this year was a success. Yes we had meltdowns but nothing like the meltdowns of 2019, and a lot of this had to do with the peace as there were no busy crowds to deal with just beautiful countryside. I had to deal with all sorts of issues this year due to rules I did not, and, still do not agree with as they threatened our human rights to freedom, but at least I was able to spend summer in a quieter place and that also made things calmer for Jay to fully explore. We paddled in upland streams, we made dams, we found Butterflies moths and Orchids and foxes, deer, rabbits and Barn owls.

My own personal interest in healing crystals provided Jay with a sensory experience as he explored the shapes and properties of the crystals which helped his mathematical ability to recognise and name shapes. We charged the crystals under the special Halloween moon and Jay had the excitement of laying each crystal on the tray and making a grid with them. His favourite thing is to hold them and watch the light through them, again this provides a lovely sensory visual experience which he also told his class about. Jay made a best friend this year at school. His best friend is spoken of each day in our home, he has never had a best friend before. Now he names all 5 of his class and talks about them and his teachers, a thing he has never done before. His confidence in school has gone up ten fold and his increasing abilities to converse with his friends and respite staff has also developed really well this year. Jay only had a month off during the first shutdown as he needed to go back after 4 weeks for quite a few reasons, and whilst here we homeschooled him. I am an early years practitioner with over 20 years experience so I was able to teach Jay easily as his development age is 3. We turned our garden in to an outdoor classroom. Because of this Jay learned to trust his safety in his own garden again after a 2 year phobia prevented him from going in his own garden. It started with his extreme phobia of bees and wasps and of weather. It was completely the highlight of this year to see Jay chilling in his hammock in July relaxed and happy. What a blessing he was off school because it totally cured him. There was also the question asked of whether every person character or animal was a boy or girl! At least twenty times a day Jay asks me if someone is a boy or a girl. He says that his Thomas the Tank engine train is a girl. I have to say “no he is a boy!” Jay will then reply with yet another character who is a girl. He will then say “Emily is a boy” I have to reply that Emily is a girl. So with the question why plus discussing the gender of everything on the planet I am kept very busy answering questions and kept on my toes with this little boys active brain which quite clearly is developing at a super fast rate now. It’s as if a switch has clicked on and he has begun to think like an active 3 year old who wishes to know everything about their exciting world and I love it! All this from a non verbal child up until age 7. Autism is so exciting as well as challenging and we never take anything for granted. Each and every year brings new skills that may be 7 years behind their contemporaries, but they mean so much because we, as parents have waited so long for them!

We have had challenges this year with Jay yet I honestly cannot remember what they were! Because the good of this year far out ways any challenge because all we see are the skills Jay learned and the beautiful memories we made!

Problems with Transitions and finding solutions.

Jay has always struggled with daily transitions as well as more major ones. This is why we have a personal daily planner, and faithfully use it each day.

But what happens when despite doing all the right things and having all the right resources in place, your child still cannot cope with any demand or transition in their daily life? Well, firstly you panic a little, and think how in the world you are going to put this right for the child. Then, as is what happened to me lately, I searched my old blogs to find what I used to do to support Jay through issues with transition and demand. We know that within the Autism Spectrum there is something named PDA. Pathological Demand Avoidance. Jay does not have this listed in his many conditions, however after the last few months, I am seriously thinking he may have this element within his low functioning Autism. This is because Jay began to react to each and every demand or transition made throughout his day. At first it was subtle then it became absolutely devestating. To see Jay go to pieces when asked to clean his teeth, or take a shower, or drink his juice or even use the toliet, was so distressing. It made our days long and difficult and it was obvious that it was way worse for poor Jay. I am sharing this because it is a part of Autism which is truly scary. It’s not easy to see a young child through it. But we do it. Of course we do because we love him! You see, to Jay, these easy everyday tasks were for some reason becoming so difficult and scary, that he would shutdown and meltdown rather than aquiese to what was required of him. This meltdown consisted of screams. Out of control screams, full of fear and indeed Jay did express fear in words, telling us he was scared of juice, or tea or teeth cleaning. These were things he is used to doing, so I knew something was really off and very wrong! I was aware of PDA as I had covered it in my Parent training course way back when Jay was 5. I never saw signs of it in Jay until he turned 6. It showed again at 7 when a transition to Special School brought a similar situation. This was due to Jay reacting to a massive change, a new school and new people. So, thinking back to then, I tried to find a reason when this started again two months ago. But I couldn’t. Try as I might I could not link this new behaviour to any event. Last year after really distressing weeks in the summer with gasworks outside our home, digging holes in our garden and constant loud noise, caused a massive reaction in Jay which lasted months. I was speaking to Jay’s, specialist nurse this, week about it and she said maybe the reason I could not find a trigger this time, may mean a delay in Jay’s ability to process events might mean that the trigger was months ago. This was wise, because it had not occurred to me that the trigger may have already happened weeks or even months ago. This is where we must look at delayed processing and truly understand it. A trigger which may be an event or a situation of high stress and demand, can sometimes not be truly processed by the child until much later on. I’ve seen this many times in Jay’s life. I knew that Jay’s nurse was possibly right. What had happened in the last 6 months which may have triggered this extreme PDA linked reaction, resulting in Jay crying hysterically and screaming at everything we asked him to do? Then the answer came to me suddenly. Change had happened. The current situation had happened. Massive change in that for 6 weeks he was home schooled. Then to return to school with only 30percent of pupils there and weird set ups to his school environment designed to minimise contact. Then the summer holidays came, and even though Jay had his usual Respite carers they cared for him at home, no trips and no therapy. There was another trigger. No therapy. Only people who understand how we live with Autism, know how important therapy is. Jay usually has access to Hydrotherapy, sensory rooms and music therapy and every single part of therapy had been shut down. I’d got there at last. I’d found the triggers. For an Autistic child like Jay, all these differences and changes to his life, were all affecting him yet they had not affected him at the time. I told all his people how unbelievably well he was doing during this time, but the whole time Jay’s brain was desperately trying to process it all and finally by September his brain had caught up and he was processing events from back in March onwards! This is important when attempting to discover a trigger for a particular type of behaviour or reaction in a child with Autism. There are many problems as the child will most likely have delayed processing as part of their Autism, and here we saw PDA come out in Jay. No matter how we delivered the task he reacted in the same way. I used viable aids to help him, he still reacted the same. All my usual ways were failing! What could I do? What was left to try? Well, the solution presented itself in an unexpected way, from an unexpected source, as these things often do. One of my care workers was with me one Saturday supporting Jay, and I happened to mention the development of PDA in Jay, and my respite Carer made a suggestion. She said that during her experience with PDA, it had taken her 3 years to work out that if you simply mention the demand or task the child needs to do or go to, in advance in a simply put way, speaking in an eluf chilled way, and not directly , then by the time the task is here, it will have processed in their brain and will not be as scary or too demanding to do! I took that in, and thought it through, then applied it that very night. One of the things Jay was struggling with was getting on to his school bus. Going from our house, to the path and getting on the bus with his passenger assistant. It had nothing to do with his assistant whom he really loves, or his friends waiting on the bus. It was the transition itself that he couldn’t cope with. He wished to avoid the demand, hence pathological demand avoidance. so, on that Sunday, I chatted to Jay whilst he settled in bed that night, and I casually mentioned that the next day his passenger assistant would hold his hand and take him down the path to see his friends on the bus. It was non direct. It was casual and non scary because it wasn’t a direct demand. The next day I mentioned again at 730 that soon Sue would arrive and he would see his friend B on the bus and again he didn’t react at all. When the bus arrived I was amazed to see Jay walk freely to Sue and take her hand and go to the bus. This, after more than one time of resisting physically and strongly down the path and believe me Jay is tall and strong for 10 so that was no mean feat. I shut the door that day and reflected over a morning coffee, could it be this simple? Surely not? But you know what? It was! I began to use my carers concept in all tasks and demands and transitions in Jay’s day and it worked. Yes we had the bad days still but in general, as long as I casually dropped the hint to him before something was to happen, Jay accepted it . Sometimes people make such a difference to your lufe and Jay’s carer who I count as our friend, by giving one simple piece of advice, changed our and Jay’s life for the better! Things have settled this last week. Jay, I believe has finally processed this last year and even though he still doesn’t understand a thing about why this happened, he did notice the changes made in response to it. So, we carry on using simple but effective ways to support Jay and to continue to show understanding and acceptance of all his ways issues and fears. No matter what Jay does to react to the world, scary or good, he has us, his family to support him, love him and fully accept every single side of his amazing personality and his Autism, delays and learning difficulties. We always will!

Standing out from the crowd-Autism and individuality.

Throughout my life, I have always known I am different. It was not until I had my third child Jay, that I truly found out who I am. It was Jay’s Autism and his unique individuality that first alerted me to the possibility that it’s absolutely fine to be different and embrace that uniqueness.

Then I got to thinking about how many children and adults I have met along Jay’s and my journey, and how they all had that one thing in common. Each and every one of them has their own free spirit and uniqueness that like Jay and I, stands out if the right people are able to see beyond the norm and in to the mind and soul of that person or child.

Being different can be a lonely road, until you awaken and realise that you do not have to follow the crowd. You can stand aside from them and dance to the rhythm of your own drum. Autistic individuals often display what people call quirky characteristics that are more noticeable to those people who still follow a social set of rules and etiquette, which without their knowledge actually enslaves them not frees them. Those Autistics who like Jay do not know any other way of being, except for being themselves, will always appear strange, odd and weird to those who do not have a mind that is open enough to accept their differences and see their true shining souls. Jay has an aura about him. He has a light that shines from within his very being. People comment all the time about his expressionate eyes, and his beautiful smile, which lights up their souls and makes them feel happy. I am so delighted that my boy can ignite a light in others like this ,that light is the very thing that makes Jay stand out.

Many people, when their children are diagnosed Autistic, are uncomfortable with the traits that go with Autism. I have had conversations with mums who say it. Especially people who are incredibly social. The lack of social skills and abilities make those parents try to enforce a social life on the child or young person. The person actually does not always want this. Many Autistics prefer to be alone, just like introverts do. On the flip side many Autistics want to have friends and socialise, but they just do not have the skills to do so. This makes them feel unworthy or sad that they cannot seem to fit in, inside a world that insists you stick to their social rules. This world is a black hole for many people who have Autism, or are introverts or unique and quirky. The same can be said for any individual who seems different or does not ‘fit’ in to the social ideals and expectations that rule the social kingdom. We should always challenge any rule that excludes groups of people. Absolutely and completely challenge any form of non acceptance of a person’s right to freedom. Freedom to express who they truly are. Freedom to stand up and be different. Freedom to show the world their special uniqueness and to be given the chance to show what they are made of, regardless of whether they fit into the social bounds of supposed normality.

Lately I have had to stand out from the crowd. I have expressed my right to freedom many times over the last 6 months, my right to choose, my right to think differently from 95 percent of the population. Sitting listening to people around me saying what they believe but not able to say what I actually believe, as my beliefs are more radical and not what the majority think or wish to hear because it takes from them their preconceived comfort in closing off their thoughts to possibilities they don’t want to believe could happen. It happens all the time. I wish to have the right to not become a sheep. A Lemming, jumping off the cliff following each one as they jump. Breaking free from the bonds of strict society rules which I had nothing to do with setting up. I was learning more and more about myself. About the power I had, to speak truth, even if people were not ready to hear it. I was awakening. Awakening to the true strength and power I had realised I possessed by just standing up for what I believe, instead of keeping silent and having an easy life. To think differently is a powerful thing. It is also exhausting. To effect change and challenge a pre conceived idea takes absolute courage and integrity. It takes a bravery that few people seem to have. If noone ever stood up for a new way of thinking, then we would still have climbing boys and slavery. It takes exceptionally gifted people to change the world for the better and I am willing to bet that most of the freedom fighters in history were in fact on the Autistic Sprectrum. Autism seems to give the person extraordinary gifts. These gifts if applied can make truly powerful individuals who quite literally can make change happen. Either they invent amazing things, or they challenge the system when it is wrong to make a better world. These people exist in history. Einstein, William Wilburforce, and Sir Issac Newton were all game changers, exceptional people and with many of these examples it is thought they were actually Autistic. Autism, especially high functioning, creates super clever talented people who excel in their particular field. Artists, technology experts, writers, scientists, philosophy and Doctors, and actors, often its Autistic people who enter these professions and excel in them.

This observation goes some length in showing how Autism truly is a gift. It’s challenging, it is hard and in Jay’s case, with development delay and a severe learning disability, its a difficult thing to live with, but the purity of these children’s souls, the light that shines from them, makes them a shining example of all that’s good and right in this complicated world. I am proud to be different. Proud to stand up for those who struggle to stand up for themselves. I am proud to be a voice for those who cannot speak, and I will always encourage my Autistic child to express his light in any way he wishes to. I naturally gravitate now to people like me. Those who are unique personalities, those who seem odd to others who to me just seem like my soul mates. My crowd, my people. I will always accept the people who are seen as weird, I think they are the cool ones, the interesting ones. I want to know them and they are the only people I can actually connect with. They are my twin souls. The people who, like us, shine their light, and are not afraid to think outside the box. I do not follow mainstream anything. I will always look further in to a situation, and question things, I never accept something purely because it’s easier to. The challenge here is to be different without causing yourself stress. That is where my true challenge is. I get very passionate standing up to the crowd and I need to learn to say it then be free of it..

Being on the spectrum is at times hard, but seeing the many great gifts Jay has, and knowing that the same light is inside me, makes me so proud to be Jay’s mum and Carer. It means that I truly understand him because our souls are made up of the same stuff. I see his mind, and I understand how important it is for Jay’s uniqueness to be accepted in the wider community. It’s the reason I write my blog and page, it’s the reason I share who we are and what we stand for.

We stand for a group of people who are strong and not afraid to show their true colours. We are not afraid to be different and we do not fear being alone. We love it. It’s where we find ourselves. Whatever and whomever you are, find out who you really are and don’t be afraid to shine your light. Don’t ever dim your shine to make other people more comfortable. Be you, your authentic self. No one likes fake. Fake is weak. Being yourself is strong and powerful!

Dealing with Pica in the child with Autism.

Dealing with ‘Pica’ in a child with Autism.
Today I’d like to draw attention to and create awareness of a little known Autism trait called Pica. Pica is described as an overwhelming craving for anything that is deemed un-eatable. It can be dirt, or soap or ice or grass any item that you would not ordinarily eat. It is very common in children with Autism, especially classic Autism like Jay has and is made harder to deal with by the fact that the child often has no understanding of the danger and risk in eating such items. They also have overwhelming sensory urges to smell touch and taste anything that has scent, a specific colour or a texture they need to explore both a tactile and sensory way. We saw Pica in Jay when he was three, and we are seeing it again now. We have caught him eating grass, attempting to eat plants which so far careful supervision has prevented, soap and hand gel. Soil and leaves have been attempted too. It may seem really messed up to people who do not understand Autism, but when you truly understand it from the child’s point of view it becomes quite clear why they do it. Firstly, they are incredibly sensory. The need to explore things in a sensory way is overwhelming. Secondly the child who has classic Autism and delays and a significant learning difficulty such as Jay will not have the cognitive ability to reason out why it is not okay. They are driven by their sensory system which is scrambled and the way it receives messages is different to neuorotypical persons. PICA can be an Anxiety thing, a way for the child to calm their nervous system. It can be linked to OCD behaviours and certainly is jn Jay. Over this long period of unsettled and immense change, Jay has held it together, only for it now to have become processed in his brain. In response to the ongoing stress and anxiety caused by this 3 months, Jay has developed ways of coping mentally with the changes he sees. Pica is one of the ways he is trying to cope with and process this. Anxiety over the changes he has seen especially in school, has led to Obsessional Compulsive Disorder returning to Jay and in particular a need to say the same phase over and over all day long. The phrase is repeated in school and at home and in his local environment and is used in conjuction with stimming, in Jay’s case flapping his hands whilst making noises. Jay is using a form of speech called Echolalia where the Autistic will repeat parrot fashion phrases all day as a means of regulating their over active nervous system. We have also discovered that Jay has been writing in to his search engine phrases such as words which reflect how he is feeling. I found in his history he had written the words “sad Saturday” This is because he starts each Saturday with an anxious meltdown and has done since September last year. He also wrote ” I feel sad” and put the words screaming child into the search. This shows me clearly that he needs help with understanding his feelings emotions and his meltdowns. Jay is a happy boy but he must be seeking answers for himself as to why sometimes he has screaming meltdowns and feels sad or angry. I have decided to go back to a feelings board to help support this and I intend to watch him like a Hawk whenever he is around any item he can eat which is inappropriate or harmful to ingest. This has been a hard time for us all but yo Autistic children and adults it’s doubly bad as they actually do not understand d anything about it and that is way worse than knowing as we all know why, but they do not. This leads to high levels of anxiety and behaviours such as pica and ocd getting worse in response to their enhanced emotional state. They need to be protected and supported through this difficult time.

To Fight the Good Fight-becoming a Warrior Parent.

Nobody informs us, that when we become Parents to a child with any Special need, we will embark upon a journey of self discovery, self-improvement, and gain an ability to speak up for and determine the course of another person’s life.

The ability to be your child’s Warrior, does not come easily or quickly. It is a crescendo of feelings,emotions and circumstances, which when blended together,create a new force and ability within the Parent’s very being, which will stand you throughout the test of time. It will teach you to gain skills you never ever thought you could have, and with a depth of feeling you never felt to experience in your life. Such is this strength to fight for it, that it almost becomes a dual preservation of both you , the Carer and Parent, and the young person with SEND whom you battle for and fight on behalf of!

It matters not, whereabouts on your enlightenment journey you are at, or which path you choose to take throughout, there always will be the element of personal growth, because without this child, you would not have to become, half of the person you are adapting to be. Special Needs, makes good people, who become exceptional, because if you do it with as much love and passion as many of us do, you cannot fail to achieve the attainment level and understanding of situations and also people, that you can, if you allow yourself to be taken on the journey, and accept that it is your fate to do so.

The journey which we are travelling on, is not undertaken by choice. None of us choose to be in this situation and so the only actual control we have, is in the decision to be brave and follow our destiny with strength and courage. Or not! The choice is up to you. Acceptance that you have to do this, immediately frees you and gives you the first victory in battle! The next battle you undertake lasts indefinitely, and this is the one which takes the most courage to face. For, you will never again be free of making decisions and fighting battles for your child. That war continues throughout their life.

However do not fear this, as life with your child will equip you efficiently if you let it, to fight your battles and be the most important voice and Warrior for your child! Learning skills along the way, is essential and necessary, as you will be called to battle many many times in your child’s life, throughout all the transitions they go through.

For our journey, I did have a head start, in that I am an early years Professional, so some of the skills vital to being a good warrior for Jay, were already in place. But let me tell you, that gosh have I learned many along the way, that I never had. Unfortunately I was not prepared for how many times I would be called to the front line, and this is why I feel happy that I can pass this wisdom on.

The isolation we feel, when we begin our journey is overwhelming. At this point, we are all in no man’s land, unable to maneuver the path. Obstructions prevent us from seeing clearly, and the fog we stretch out our arms to break free from, continues to rage inside us. We do not understand. We do not know what to do. We cannot see our way ahead to victory, neither can we process the very real prospects we face. Time is and always will be a great healer. Along the path to discovery, we slowly and at times, insignificantly, piece together the puzzle and by use of strategy and perseverance, we find our way through. Until, finally we reach the point of clarity, at which stage we may leave the battlefield’s isolated and lonely place of no man’s land to begin the next phase in the battle, which is to actually gain victory.

“There is a peace only to be found at the other side of war. If this battle should appear I will fight it”  MMm this quotation is not to taken in the literal sense. It popped in to my head just now from a movie I once watched and was spoken in the story by King Arthur’s character. It is true. No person if sane wants to go to war or battle if it can be avoided. WE do not desire this fight, or the battles we face. We would prefer to live in peace. But the thing is-in the case of SEND Parents, it is the fight that develops our characters, and makes us become strong Warriors. We have no choice but to fight it, else we fail our children. That is way worse. We cannot fail them. We have to go on and battle for their rights. It should not be this way. It is not how it should be. Yet would we be strong enough to face the everyday stresses, had we not been trained in battle? Would we find the mental and physical strength to go on, had we not found it in the combat we have faced and endured and come out of with skills we did not have before?

I believe that what we go through, fashions our characters for the better. Just as the bravest of soldiers gain their honour through fighting for good and peace. Again, lets not take this in the literal sense. We do not need to, because these soldiers who fight for real are amazing and I salute them, but in metaphoric terms the ability to see it through these ideas ,reminds us daily of how strong we are. To put yourself on the enemy line for another is the most honourable thing a person can do, so let’s remember that, before we embark on yet another battle for our children shall we? Let us give ourselves the merit we deserve and realize that what we do, and millions of Carers in this world do, is an honourable healthy and strong thing that commands respect too. I have been told by people that they do not know how I do it, and that they could not put another’s life first above their own to the capacity we do, and that it would drive them crazy.

Well, my answer to that is, you never know what you are capable of doing until the situation arises and you are faced with it.We choose to stay and fight, or run away. Simple as and many people have run, and that is very sad, thank goodness most of us make the right choice, whether we are strong or not, we try.

Lately I have had to go to battle a lot for Jay.  I feel like I have always found my way and achieved for Jay whatever we have requested. Lately, this has changed. Ever since the Summer, Jay has found things so much more difficult. His issues have spilled over in to his School life, and in to his Respite life too, and for months I have been trying to get him 2 to 1 for outdoor activities and swimming. Those who read us a lot, know that Jay has Extreme phobias ,high anxiety, and sudden Sensory reactions to things, which affect his daily life especially in Summer. Recently his Sensory overloads have become worse and I attempted to add support so that he can access outdoor trips more and swimming. For Swimming it was granted. Jay’s hours with Respite are vital to his mental well-being, as so many times, the activities he does including sensory activities have saved him from bad days, and enabled him to have his mind diverted from the Sensory overloads. It also helps him learn to communicate and socialize and gain confidence in being in the outside world, something which he struggles with and without his Respite team cannot do. So, the question of taking this support away or reducing it to pay for a 2 to 1 ratio was not going to happen. Jay is safe with his respite team, I must stress this, I just felt his reactions were so extreme now, that extra support seemed the right way to go.

The above information is not up for debate. I merely shared it with my readers to give a clear example of fighting battles for your child.  When we claim support for them, we fight. When we try to get them in to the right School , we have to fight. When we try to secure funding, we have to  fight. When we have to keep them safe, we have to fight. When we need to educate the public we must fight or Professionals who may not know how to help them, we fight to make our voices heard. We always have a battle, and trust me, with two non-Autistic Children I have known a normal life without battle, and life was so much more simple then.   I have Jay’s Education and Health care plan annual review coming up soon. In 2016 I fought to get Jay that plan, and in 2017 I fought again to get him in to a Special School, we all of us with children with SEND fight, all the time and it is incredibly draining emotionally and physically. Yet like I said earlier, along with this fight, comes skills we gain, which give us the tools and strength we need to go through life being the voice of another who cannot speak for themselves. The ability to go through life being a strong Warrrior, a protector of another, whom we would fight any enemy for and lay down our life for, as they are the sole reason we embark upon the journey no matter what it throws in our path-we will prevail!

Autism and the Indigo and Crystal Children.

Science has tried to piece together the puzzle that is Spectrum conditions for years. They give us explanations and most people believe them.

I am a free spirit. I do not necessarily  believe what human beings tell me just because they are in a position to do so. Therefore, I think for myself.  Though Science says Autism is a neurological disorder, and whilst they may back that up with Science, it does not follow that I have to accept that there is no other reason for us Autistics to be here.

All parents believe their children to be special and indeed all children are, to anyone who appreciates them. When I say my Jay is special, I mean it in a uniquely different and more spiritual and, deep sense. Evolution can explain why there are millions of Autistics in the world, in every race and culture, but the belief that there is a more profound spiritual reason for their presence on Earth, is a concept that only the most free minded, free spirited and individual persons will consider and only the most free will believe.

I am one of those people.

From the moment my son was born I knew he was different. Not just developmentally. I saw in to his very soul and spirit, and I saw a light inside him, but I did not acknowledge it for a lot of years until he showed signs of his Autism. I remember him at 4 months old, sitting in his pram, waiting for his sister April to come out of School, and I looked in to his eyes. They were focused intently on something beyond what I was able to see with my eyes. I remember seeing his light then, in that moment. I am able to share this because its only now that I realize that it was telling me something. Jay came from a place that chose me to be his mum. He was created by us, yes, but his purpose was a different one. I have only just realized it in this last few years, that Jay has been slowly teaching me about myself as well as himself, and I have listened and learned and become.

I believe Jay is a Crystal child and I am an Indigo parent.

I am perfectly okay with the reaction I might get for saying this, and to be honest with you all, it matters not to me what people think because I am not on Earth to meet with other People’s approval. I am part of  the natural world and the natural forces and elements, so I do not worry about peoples opinions, however I do of course respect everyone’s own beliefs -I am merely sharing mine. I will never ask for approval.

What is an Indigo and crystal child or person?

Indigo children have a light inside them, a non-responsiveness to the norm, and a spiritual maturity that appears to belong to old souls who have been or come from somewhere more spiritual and divine. They are completely aware of who they are and where they belong. They are creative, empathic, curious and considered to be strange. They are highly intellectual , and have a consciousness of a higher place and way of living. They do not respond to the norms of society or social hierarchy, they simply do not have the concept within them.  The Crystal children are believed to be the offspring of the Indigo children and they are both idealists who are not interested in material things or money, only in the more calm, light and spiritual side of their own mind and life , and such things as success and power mean nothing to them. They do not need these things to be happy. Their happiness comes from a more divine place. They often possess gifts which are not the usual. They are usually gifts linked to the arts and the spiritual world, and the areas of the human brain, not used by the majority of people.

That side of the brain, is the spiritual side and is where true gifts are present. There is no reason to believe that Indigo children always have to be Autistic, but they all represent a new wave of consciousness and way of being, that society as it is today plays absolutely no part in. I know I am an Indigo because I have all the above traits and am not manipulated by those Authority figures who secretly mould us in to what they want us to be, and openly and blatantly lie to us on issues in the world and who seek to control us all using fear and corruption to rule us.  It sounds a bit sinister doesn’t it?  However I am not here to discuss that, I just know that I am a free thinker and I do not believe a word of whats out there just because another human being says it. I go by my heart and soul and am guided by my own heartbeat. I know what is right and wrong and I live simply and contentedly because I do not go after every little distraction designed to keep me from my free thinking mind.

I have always been different. I have thought differently to others. I have gone through life up until now wondering why the hell I couldn’t be like everyone else and fit in. The truth is I did not fit in because I was different. The moment I learned who I really was, I was able to fit in to my world. When was the moment I realized who I was?

The years after Jay was diagnosed with Severe Autism .

Jay is the reason I found myself. All of his Autism traits were fully visible by 6. I slowly began to realize that his traits were my own. I was clearly showing the traits of the Autistic Spectrum. I tried to tell a few people but they did not know me well enough as they dismissed it as I was far too eloquent and socially fine. But I wasn’t. I would go to a social event and seem fine. The truth was , I was masking and was very good at it. I masked at work too. It was how I got through. No-one ever knew and even I did not know. Jay taught me who I was. After 4 years with him from 5 to 9yrs old I slowly pieced together the puzzles of my life, and the struggles I had inwardly had. I asked myself how could I not have known, when I preferred to go and watch the sunset or stars or birds rather than go out on a people night out? I was not comfortable in that role. It was never me. I never wanted it. All I ever want is the natural world around me. To be a part of nature on a daily basis and I have always written about feeling at one with nature too. I was never at one with people. Except my own people. They were the only people I could relate to and truly love. However , like my Jay I do have empathy , too much , and so I had to switch off from that to survive as I took on too much of peoples problems. I now know how to listen and be a friend but to also protect my own energy from their negative problem, and continue to help them, without losing my inner peace and calm. It has taken me years to learn that.

Jay has a light around him. Only someone like him, could see it. I saw it from his birth. I felt energy from him that had light in it, that had a strength in it that transmitted towards my soul and this is the reason I can help Jay, and why I understand him and know how to lessen the burdens he carries. His ultra sensitivities that make this world intolerable for him are also in me, but at a lesser level as I have learned to mask them and switch them off. The sensory side of Jay’s mind is so advanced and switched to a frequency way higher than regular people, that I am not surprised he has the ability to give off an energy which is felt by people like me with the ability to see and feel it. Regular people may not be able to.  They may not understand that all around us is energy. Our bodies are made up of the same elements that made the Universe, so why is so hard a concept for people to grasp, that we ourselves have those elements in us, and they are not just scientific, they are spiritual too. This kind of light can guide our paths and enable us to live a more alternative life, that is driven by our own minds not what other people are telling us, but our own thoughts, feelings and beliefs. If you can be one of those people who can dance to the beat of their own drum, instead of following the crowd and worrying about what other people think of you, then the freedom that comes with that, can carry us through life on our own terms.

That is how Jay lives. He sees the world in a different way. He has nothing normal about him. Neither have I.  Just like myself , Jay looks at the Sun and the sky with a pure and spiritual, happy face that glows with a light in his eyes that shines through him and if I am standing next to him I can feel it. It goes in me. It can work in reverse too. If Jay has overload and is in a sensory shutdown , the negative force in him also is felt by me and it brings my spirit down temporarily, but his true spirit soon returns and lights up again. These children have an aura around them. I have seen it when I visit Jay’s School. There is a happy and delighted spiritual energy around them and each one shines. The struggles these children and adults face in life, has everything to do with the fact this world does not suit their souls. They are so emphatic, creative, and knowledgeable and in touch with the natural world, that when they are deprived of that in noisy busy places and they cannot get access to wild places , their system shuts down and causes Meltdown. They prefer to be in a peaceful and tranquil environment to feel who they really are, but in today’s fast paced, must have, must get, must buy ,must succeed , must make noise ,environment ,its impossible for these children to truly excel or settle, which therefore leads to distress and unregulated behaviours coming out.

Allowing Children like these to access environments more suited to their delicate and light centred souls,is the only way to help them.  Whilst we force them to conform and be like everybody else , which is School’s way too, they will never settle or feel truly alive and able to fully express themselves and be who they are meant to be. I have shared before that I believe the way these children are we could learn a lot from. They will never be mean, or bully or be pick on someone because their hair looks wrong, or lie . They do not lie, in fact their ability to see things in black and white and in a literal sense means sometimes they can tell the truth too much and border on hurtful, but the intent to harm someones feelings is not their agenda. They are just being natural and truthful. Jay does not know how to want. He is content and happy and likes things the same. He is never going to be low or down because he isn’t where he wants to be. He is just in the present moment and finds happiness there. I am also the same. I rarely think about the next great thing. I live for the here and now and am content with the way my life is and I never wish to be anyone other than me, or even want what someone else has. It just does not even enter my head. I am settled in the here and now, rarely think now about the future as it hasn’t happened yet, and rarely visit my past as there’s nothing to aid me there.

With Autism no two days are the same. Yet there is a sameness to each day.

Whether you believe in Indigo and Crystal children being the Autistics or not, the truth is never based on fact. A truth is only what is being proven so far. Truth can change and is often subjective. We can choose to believe  what we feel in our hearts to be truth and right, not from what some one else pushes on us as their beliefs or their agendas. I have learned from Jay and he has taught me about who I really am, and because of that, I now know who and what Jay is too. This helps me to better meet his needs as understanding Autism is the first and most important factor we have in helping and making their world better for them. The colossal amount of humans with Autism on this planet in every country in the world means something has happened, and something has changed, because even though Autism has always been here on Earth, it has never been to the scale it is now and so I am willing to believe that a force bigger than us has something to do with it.  I do believe that humans with Autism have light inside them, but also have dark and so the balance is perfect, as we all have light and dark in us. I have never met a child with Autism whose light did not shine brighter than his dark and I do not think I ever will! Although I believe in the Indigo children being Autistics, I would never take the more extreme view that no medical intervention should be sought. Children with Autism need that diagnosis, they need a Doctor involved in their care, especially those like Jay who have Global development delay as well as those with Epilepsy, and the diagnosis is essential to make sure they get the complex support they need. Right now Jay is with a team in the NHS and they are offering support as his needs are very complex. Jay meets their criteria and the service is so far really helping us with the challenges Jay now faces in every day life, so I would like to say to all with children like Jay, I hope you may open your minds to the fact they may well be here for a reason more spiritual but it should never replace professional support or Diagnosis. That is Paramount in getting the support they need in life.  For now, I am content to just trust in the Universe and do the very best I can to support my little Crystal being. Becoming his Mum has been one of the most honoured and privileged times in my life! Life is rich when you know how to be content with where you are and carry your wishes and dreams in your heart, ready for the next chapter whatever that may be!

The Best version of yourself

It seems so long ago since I wrote a post! This half term has gone super fast! I guess I just needed some time and space to re-group and to get Jay through his first weeks back in a new class with new staff.

It is my belief, based on experience, that the strongest factor in the School life of a child with SEND, is a good Teacher who knows their stuff! It is not a given, that your child will get any such Teacher. It is the luck of the draw. Even in a SEND School, there are Teachers who understand better than others.  Luckily for Jay, he has had some amazing Teachers over the last five years, thank heaven for it, as School would’ve been so different if not. Starting Reception in 2015, Jay had a lady who was so kind and understanding. She went out of her way to help us and to support Jay.  But it was really Jay’s first TA ,who really got and understood Autism and Global delay. Moving on to Year 1, and all went wrong. However this was not due to the Teacher, it was due to Jay beginning to suffer with OCD and Phobias.  It just was not working for him. A clinical learning environment, which only suited the needs of neurotypical children, and not a child with severe delays and Autism, was too much for Jay.  Changing the classroom on advice from our child Psychologist, was done by the class Teacher, without complaint and with an understanding that put her high up there in our estimation. It even resulted in happier children in her class , as they got to experience the new, more play, and sensory based learning spaces, so all was well.

Moving on to Year three, and Jay had , of course moved on to his Special School. Again, we got lucky with a really great Teacher. But never ever assume that even Teachers in SEND School all understand Autism, as that year all the Teachers in Jay’s School  were training in supporting children with it, which was fab to hear!  There are many conditions covered in a Special school, and so the Teachers would have to be experts in many which obviously they could not be. The way they teach is different, and the bespoke Curriculum, tailored carefully to each child’s needs, are what makes Special Schools stand out and so different. Each child, in mainstream, is expected to meet set targets laid out by Government, not Teachers.  If a child gets behind, the Teachers are expected to change that. In Special schools, it is the same, in that Teachers work to help the child reach his or her full potential, but, they teach the way the child learns! The child works at his or her own pace within their own level of understanding, and there are no tick lists and SATS to worry about.

It is fortunate, that in this new term and academic year, Jay yet again has an exceptional Teacher and TA.  Jay went back with all of the baggage of the Summer holiday noise and upheaval of major gasworks outside his home, and so I am grateful that he is in a class with a team of really understanding and knowledgeable staff.  For all of this term Jay has been processing his Summer of noise and anxiety and his phobias and OCD are back full tilt, but whilst he has such understanding staff to support him, I am confident he will get through.

I keep reading in the media which represents all things SEND related, about the issues in mainstream Schools about supporting those pupils with SEND ( special educational needs and disabilities), and how the situation is dire and those children are being failed.

Yes, the Government must answer for this situation, and it is their cuts that have made it so near dam impossible for Schools to get the money they need to fully support these children.  However, I feel quite strongly, that on the front line of the battlefield, must first be Teachers, who are fully trained, in the most common Disabilities such as Autism, ADHD and Dyslexia. It is no use at all, ploughing money in to Schools for SEND, if the people at the front line of the service are not fully equipped with knowledge on how to help and support the children with these conditions. I must also say here, that I am sad to learn that many Teachers do not seem to want to get it or understand. There will always be what we might call ‘old school’ staff who ,only see disruption and are not willing to open up their mind to look at the reason why the child is disruptive, or  in Sensory Overload. I know someone training right now to be a Teacher, and they have not learned much at all about SEND, but I am not quoting them, I am saying that whilst Teachers are not properly trained, we will not see a squat of difference! TA support is essential too, so the more TA’s who have the knowledge to support the children with SEND, the better the situation in class will be.

Speaking as an ex-SENCO in a setting in early years, I always believed in Inclusion, but after having Jay, I am not so sure that integration is best for these children. There is a major gap between children without SEND, children who are milder, and, those with severe SEND like Jay. The children in the middle,  who may not meet criteria ,are the children we refer to who are stuck without proper support, and these are the group who seem most likely to be excluded or left without a School. Children in SEND Schools having their EHCP documents, mean their needs are often met and more understood, due to the experience and knowledge of the staff, and the right placement. Yet ,the children in this middle group, too mild to access Special schools, but severe enough not to cope in mainstream ,are really left out. I like the idea of the Schools who have Autism units built on to mainstream, and I wonder if  it would be better to fund special units within mainstream, and staff them with SEND staff who teach the same way as they do in Special schools, rather than keeping these children in mainstream, where many staff do not have the professional training how to help and support them to meet their full potential. The me of 2014 would never have said this. I believed 100% in inclusion but it does not seem to be working! If it was ,there would not be the crisis there is.  I am only thinking this, because of what my experiences have taught me and how much my beliefs have changed since having Jay. There will be people whose children have done great staying in mainstream, but I have heard too many friends and acquaintances, saying how unhappy their child is and how the mainstream School they are in are not meeting need.  I know Schools need more money, and this must come from being properly funded, but if we get to that stage, we need to properly teach the staff how to find a way to teach these special children, and it will not ever be the same way that they teach children without SEND. It cannot ever be the same, because children with Autism especially, require completely different ways of teaching.  My advice to anyone who has a child with the type of Autism and delays Jay has,  is to not linger too long in mainstream, because eventually it will show up. The child will not be able to keep up. My Jay left mainstream at 6 and could not read or write. By the end of the first full term in his new SEND school, he was fluent in reading and writing full sentences. They teach the way the children learn, and the way they are able to teach the children according to each child’s level of understanding ,is the sole reason the children flourish and grow and are happy. A child at my son’s School, told us when we visited ,that  she felt the School was like one big happy family. That is a quotation -a 13 year old girl said that to us! That cannot be faked and was from her heart and many others said similar things. Jay’s School is like a family and he is very happy there.

I have added a few more visual supports for Jay to his visual area.  We now have a seven day weekly planner, which has enabled Jay to know what day it is and what he will be doing. Also, a new feelings board which he uses every day to show us how he feels and lastly a time of year board, as Jay does not understand time or when something is going to happen. So, he now knows which season we are in and which time of year . I am about to change the seasons board to Halloween, and this is a time of year Jay loves as we have a family party each Halloween. We all dress up, and usually Jay does not want to, but this year he told me he wants to be a cat and so I bought him some cat ears on a headband and a black outfit and I will post a photo of him in his outfit on here after Halloween. The party itself has often proved too loud for Jay, but he also has a strong sense of family and where he belongs and speaks of his cousins every day and his extended family, as well as the five of us in his own home. It is lovely to see such strong personal development in his sense of self and his self awareness is so much greater than before. He used to refer to himself as Jay -he would say”Jay is scared or Jay is hungry. Now he says “I am hungry I am scared” This is so significant! So amazing and exciting and again I can assure everyone, that Autism and even Global delay, does not mean the child cannot develop. With the right guidance, love and support they can and will fly, and even though they will always need caring for, they can be the best version of themselves, and that, is the most important thing to be in life-the best version of yourself!!

Jay with his friend Snakey, his ‘feelings ‘board and his new Seasons board.

Jay’s Lullaby


This morning I was washing the dishes when in to my mind came the words of a song.

It is not just any song. I wrote it.  I have written a few songs in my time mainly with Guitar, but this one was different, as it was about Jay, and his struggle these Summer hols.  I have spent weeks, supporting Jay through the constant noise of the Summer. It began with the Gas works outside and 7 weeks later they are still here, and now Jay has been affected so badly that any noise is inducing sensory overload leading to full blown Meltdown every single day and real distress for poor Jay.

I know in my heart I am doing the best I can do for Jay, and looking back on the holidays, I would not change any way that I handled the difficult times.  Yes, I have daily help from my brilliant Respite team, and they have saved Jay time over by removing him from the stress and taking him to places such as Hydrotherapy and Sensory rooms, god they have been a god send , and I have never regretted going to children and young peoples services to make this happen.  To explain this, if your child meets your county hall’s criteria for respite, and your family circumstances do too then you receive a budget from them, to pay for Respite, and in our case Jay has low functioning Autism with Global development delay  and needs intervention outside his own people. I also have a chronic pain condition which is why we get the daily help. Without this service I cannot imagine where we would be! It is a vital service for special families and it is designed to help the child and prevent Carer Fatigue.

This morning when the noise started again, plus a somebody in the next street, who has decided to use a stone cutter every single day for 2 weeks grrr ,I decided to bring in our Guinea pigs for Jay to cuddle. It did help to settle him, and took his mind off the noise. Yet, he can still hear it even through his ear defenders and I cannot take him out because every where I take him has noise and wasps and people and dogs, and so we just feel trapped at home. This is when Carer isolation kicks in.   It is very lonely. If you have a friend or family member in this situation I beg you to consider whether they are okay.  They could feel down and depressed, or have anxiety because things are getting worse or too stressful, and the biggest threat to their health is constant stress.  They may just appreciate you taking the child for an hour or so to give them a rest. Or you could come and see them and have a drink with them-just having a chat over coffee can lighten the load they bear. Just knowing someone cares, and is thinking of real ways they can help is enough to eliminate the chronic loneliness a Carer feels.  With children who have severe disability like Jay, it can literally be a life saver to have respite, but please don’t take for granted that that is all the child and Carer needs. They need their family and friends too. Too often others are out and about having trips with their children, going to wonderful exciting places, whilst the Carer is literally trapped because if they go to these places it becomes an absolute nightmare as the child breaks down in to meltdown and everyone stares and judges the child and them. Dealing with Meltdown is a very emotional physically demanding thing. The child is incapable of regulating. This is because of the disability they have NOT behaviour based! It is physically and emotionally exhausting for the child and parent, and so, whilst you’re having your holiday fun, remember to remember your friend or family member who is Caring for the Disabled child and find a way to include them. Even if this means sacrificing a trip or two to be with them instead, it makes all the difference to them and is a good deed for you.  In my personal circumstances, it is worse as I cannot go out alone with Jay due to mobility problems linked to pain fatigue and stiffness and so I am really trapped. I am naturally a sunny person who gets excited about Stars in the night sky, nature and the Sun and Moon, so I make mine and Jay’s lives at home as lovely as I can. However, if you wish to find out the truth, I get anxious and constantly worried because I cannot take part or go out with Jay, but that does not mean I don’t wish to I just cant.. No! It is hard being alone all Holidays except for my workers, and this hols every day has been hard because of the noise. I have tried to explain to friends that I cannot do play dates due to the extremity of Jay’s sensory reactions, which makes it impossible to go to outdoor places or indoor for that matter, but that does not mean I do not want to see people at home. I would love to. Being a Carer , of anybody, be it a child or adult is incredibly draining. I am not going sit here and lie to you. It is really hard! I consider myself a strong woman who can handle this but even I have reached a limit these Holidays mentally. I never ever take this out on Jay. He is my light and my joy-it is not Jay I am distressed at, it is the condition. My boy exists outside of his condition and his good soul shines through the Autism and comes out and keeps me going.  He remains the light of our lives and a beacon of all that is innocent and sweet and young, and the condition may rule the roost, but Jay is the centre of all we do and I will always love being his Mum.  Being Jay’s Carer is separate to being his Mum. Being his Mum is reading stories and preparing his meals etc , but being his Carer is guiding a child who is 2 years old developmentally in a 9 year old body, and I do not know if he will ever develop more. Being a Carer is protecting him on reins at 9 years old and pushing him in a SEN buggy because he cannot walk in the noisy busy loud world he cannot handle being out in. It is getting his needs met in School and attending Care plan reviews and OT appointments and clinical Physiologists, and it is caring for his toliet needs since he has no idea how to self care. That will probably always be the case. This is a very different role than being a Mum.

So, back to this morning, and the song. I wrote this song in 15 minutes in my head. In 30 minutes I had added chords to it and a key. By 40 minutes I sat Jay down and asked him to listen to my song. A song that will help him to feel more safe and secure in this world and hopefully the melody will stay in his head. The other day, Jay sang a song to me and I realized he could sing. He has never sung for us, or at School plays, in fact he usually cries saying he doesn’t like the noise, but for my song he sat quietly listening to my voice as I sang the words of the song quietly to him.

I hope you all like it.

  Jay’s Lullaby

I know life gets you down.

and I see you cant get around,

to a place where you can fly,

in peace and joy to find your lullaby!


So, I’ll form a bridge, to the other side,

of fear and doubt, to your lullaby

will calm your soul ’til you find release

stay by your side,’till you feel free!


We’re together now, riding out the storm.

All that noise, I will drown out for you,

take your mind, to a calmer place.

Where you can go,with that smile upon your face!


So, I’ll form a bridge, to another side,

of fear and doubt, to your lullaby.

Will calm your soul ’til you find release,

stay by your side ’til you feel free

by your side ’til you are free!

Copyright L Wardell 30th August 2019



The very bad day at the office-For Autism Carers pushing through stressful days -coping in the Summer holidays!

When events which bring stress, come one after the other, we can become very overwhelmed very quickly. For Autism Parents we are the Carers devoted to keeping our Special children calm during the long Summer holidays. We are often forgotten, and left alone and isolated whilst everyone else goes on trips and holidays and days out. I know what it is like to have holidays with neuro-typical kids as I have two myself who are now grown up so I know my life with Jay is not normal.  Jay has so many challenges which I guess he does overcome each day, but most of the time it is I the Carer who spends each day just trying to keep up.

Then, you get those days! Those days when you just cannot take anymore and today was one of these days for me! It began yesterday when at 3pm our electricity went out. Now to regular people this is inconvenient and hard to deal with, but to a child like Jay, the fact that his television and computer had gone off results in full blown meltdown because , you see, his brain development has not gone beyond a toddler’s, therefore he does not know why it has happened. His computer is his comfort safe place where he can be free of the world and constant Anxiety, and on the tv, Cbeebies gives him structure and routine. My other two were out bike riding in the holidays and nature walking with me, but for Jay those things mean being in the outside world which is fraught with the sensory noises and sights he cannot handle and so he prefers his safe place which is home. So, when the power goes off unexpected, he has to deal with the sudden change and the fact his trusted technology has failed him and is no longer there to soothe him.  He is quite frankly, devastated, and so follows the meltdown as he cannot regulate like we can!

Today, 26th of July, Jay and I had set off to town to go to the bakery and to the railway station. We went to the shop fine, and Jay even passed two dogs okay, but as we were near the road, a wasp flew near Jay. One minute he was fine, the next he was in total panic, screaming and shouting and trying to run away but the road was right there. I struggled to hold him! Of course I did hold him, but in those scary minutes with a strong meltdown happening before my eyes, I managed to get back control of Jay and I had to be very firm. I never get cross. It never helps to shout or get angry. It simply devastates them as they know they are angry and upset but they cannot self regulate so trying to make them, by force will never work. I spoke firmly and clearly, ignoring the stares and looks and crowd. They are all invisible to me in every day life, I have learned to switch off from all people, it is the only way to keep sanity trust me!  Luckily I had Jay’s blue badge in the car and this just proves why we have been allowed to apply for our Autistic children, as they need the car nearby in case of a full blown shut down such as the one Jay had today!

As I took Jay to see the train at the crossing nearby in the car, I thought about what had happened and if there was a way I could’ve handled it better but my common sense told me I did the best I could do in a very difficult situation.  My agenda could not have been clearer-keep him safe! I did that-I saved him just like I have saved him time and time again! That is my job!

At 1230pm we returned home, and after a chat with Jay’s Care manager on the phone, I came back to Jay to find him in another Meltdown and my Daughter, who was with him tells me the Electricity had gone off again. Oh my days, I could not believe this day. It was getting slowly worse driving along at a high speed, just out to make life as difficult for Jay and I as possible. It then came back on then went off again. Jay was inconsolable and no matter how much I tried to explain what was happening he just was incapable of comprehending it. We found out, a massive power cut had happened 17 miles away with 80000 homes without power and we were being affected by it. So basically we do not know when or whether it will happen again. Jay calmed down and we went to get him a SEN buggy we were able to borrow.  We got home from collecting it and the heavens opened and yes it began to Thunder! Another Meltdown trigger! It was literally like one trigger after another for Jay today.  I can just imagine what some Neuro-typical people who do not understand Autism, are saying at this point! Whats the big deal this is so over the top! No, it is not to Jay. These things are very scary to him. He fears them like a person who fears spiders. His Phobias control his life and our life and every single trigger is normal to other people! To us ,these events mean we see a terrified child who hears and feels pressure from Thunder, has loads of triggers to his Meltdowns, and shuts down in an Autistic Meltdown that can literally last hours and can put his very life in danger! There is absolutely nothing normal about that! It is terrifying. It is overwhelming! If you do not have control of the young person ,you will lose them and they can get hurt or worse! Do any normal Parents even understand this? All they do is stare and judge and criticize. They have absolutely no idea. I would not mind that, if they left us alone but they do not, and for this reason they mean less than nothing to me. I do not care about normal Parents that judge us SEN Parents and neither should anyone of us Carers because WE KNOW! We know what it is like to not know what the day will bring. To not know when out and about, whether the child will completely breakdown . Or worse, run away or get hurt. This is life to us. We live it every single day! The Summer holidays are so very hard for us, and lately I have been managing to take Jay out for only 1 hour a day! 1 hour! in 12. He cannot cope any longer than this. He will cope for 5 hours when he goes out with his Carers from a local kids charity who provide our Respite care, but with his ” safe people” ie ,us, he cannot because he shows the real feelings to us. He trusts us the most! He can truly be himself with us and that includes all his issues.  Not everyone can get full year round support like we do,  and because of that, I give a shout out right now to all the Parents out there whose children have SEN and say you are bloody WARRIORS!! We all are!  We need to pat ourselves on the back when we have a good day, and breathe and reboot when we have a bad one.

Today was a bad day! It was caused by elements beyond our control.  We can’t have control and that is the hardest thing because in Jay’s Autism Universe, the normal things , the mundane things and the regular elements to life that we all take for granted and don’t worry about, are the very things that challenge and bring down a young boy of nine who sees the world so very differently!  At least for now, calm resolves in our home as Jay plays his favourite game ‘naughty chick Percy’  (his creation title and all) Me? I am going to go to bed early and re charge my inner battery in readiness for another day with our gorgeous boy. I really hope it is a good one! And for everyone else in the same situation as us i wish you well xx

In his safe SEN Buggy with safety harness and at home happy and calm with a great sense of fun!