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.