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.