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!