There are a few reasons why I started writing about Autism, and those reasons have changed over time. At first I just wanted to share my story. I couldn’t find much online when I looked, so wanted to share what the diagnosis journey was really like. I quickly found that I had been so wrong. The autism community online is huge, but I just didn’t really want to read things that upset me. And a year ago, everything about autism upset me. I really hadn’t accepted it so reading things just got me in a state. I carried on writing about our little journey regardless. I hoped I could help at least one other parent that was on a similar journey to myself. Soon after, I wanted to write more about raising understanding. Awareness is increasing but understanding is somewhat lacking in many areas. Somebody reading and relating to my blog posts was what was important and educating those that knew no better was my main mission.
I then started really struggling to write about it for some reason. The appointments had dried up, the hard days were more manageable as I had learnt to deal with them, I had nothing to say anymore. It was then I realised I hadn’t been writing any of my autism posts for anybody else. The real harsh truth was writing about it had helped me. It had made me accept we are with this for life and it didn’t mean our world was over. It was only just beginning. We just had a little bit more of a scenic route to take. I then stopped putting pressure on myself to write about it. I wrote when I felt the need. A difficult day, a new experience, a moment of judgement, a diagnosis, and a close relationship with a 1:1. Whatever felt comfortable, I wrote about. Since, I haven’t struggled for new content. I am writing about my experience, the good, the bad, the ugly and the oh so amazing moments.
I came up with the idea this week of starting to write a post about how Autism affects Hayden in different ways as he grows up. It will be so rewarding looking back over the years to see what challenges he has overcome and which have taken a little more time to work out. So today I am sharing how Autism effects Hayden right now. The things he does/doesn’t or can/cannot do because of his Autism. Some neuro typical children may be going through some of the same things, I’m no expert. Hayden is my oldest child every stage is new to me. But these things I believe are down to being autistic rather than being an average 5 year old.
Hayden, Your Autism at age 5
Currently you are not completely non-verbal. You can say words, make choices and share some emotions with one word answers. You have started to copy sentences we say to you but for anyone that doesn’t know you as well as we do, it is hard to make out what you are saying. Your speech and levels of communication have improved over recent months, and we can only hope at this stage that you are slowly making your way through the general speech development journey, just at your own pace.
Excitement & Frustration:
Sharing your emotions doesn’t come that easily to you. You don’t really know how to process pain, and how you show me you have hurt yourself varies from a full on screaming fit to just running around in a circle, whimpering until the pain has subsided. Two emotions that show themselves quite clearly on a daily basis however are excitement and frustration. When you are excited you have a high pitched squeal, you jump and flap your hands. When you are frustrated you will wail ever so loudly and you can become quite aggressive, grabby and scratch whoever is closest to you. You will only scratch people close to you though, you have never lashed out at another child at school or in a public place.
Relationships and Friendships:
You will only acknowledge people you have accepted into your life, you are completely oblivious to anybody else. It takes you quite a long time to ‘let someone in’ however I am very proud of how you have handled the change in your school 1:1. You must really like Mrs K. You have 2 friends at school, one you don’t see very often as she is in a different class, and your other friend is often a bribery tactic to get you ready for school in the morning. You did try to make a friend in the shoe shop last weekend though, which was very sweet to observe. I do hope making friends comes easier to you as you get older.
I don’t want to jinx it, but at the moment you seem to be sleeping through the night. The time you go to sleep however can vary greatly. But we are averaging around 10pm. You will play, spin, jump, climb and squeal literally until the moment you are ready to fall to sleep. We are still unable to put you to bed until you are asleep, which is becoming a lot more difficult as you grow.
You are now fully potty trained, but we are having quite a few accidents in the evening and through the night at the moment. You are so busy with your spinning and squealing that you don’t realise you need the toilet until it is too late. I have tried to cut your evening drinks down, but it isn’t that easy, I just put less into each glass you request. Hopefully this will just take a natural progression and get easier for you to manage. I also think this is quite common for children of your age. We still try not to give you normal bread where possible as when you eat too much bread you struggle to manage your toilet trips more. We are still on the waiting list to see a dietician to discuss whether cutting gluten out altogether would be a good idea for you.
You have a bit of an obsession with green at the moment. You will only wear green pants, and if we try to dress you in anything else it will cause a complete meltdown. Luckily I wash your uniform every night so you are wearing the exact same clothes on a daily basis. We have found this has really helped keep the morning routine calm and meltdown free, which I really need as you hate it when daddy isn’t here to take you in the car. Leaving the house can be quite difficult on a mummy school run day.
You are very confident in your abilities. You also seem to know your limits. You will not put yourself in danger when you are climbing on something, paddling in the sea or running around the school playground. However outside dangers aren’t as obvious to you. You don’t understand roads are dangerous, and we have to make sure you are holding someone’s hand or holding onto the pushchair when we are near roads. You also don’t seem phased if myself or daddy aren’t in view. You will happily run off, especially at the beach. That seems to be a place you feel completely safe.
At school you will eat almost anything they give you (apart from spaghetti Bolognese). At home you are much more fussy. You will simply walk away from the table if I have dished up something you do not recognise. You now can use a fork and spoon but we have to constantly prompt you to use if for an entire meal. You will eat as much as you feel like eating and then simply leave the table, but you will often go back to finished plates for any leftovers at a later time. You would much rather graze on snacks and fruit all day than eat proper meals, and you have recently started climbing on the tumble drier to reach things in the fridge whenever they take your fancy. You will often try to sneak the box of ice lollies into the playroom without us seeing and you would happily work your way through an entire box every evening if they were there. You still love apples and I often use them as a bribery tool on the way home from school. Just to make the walk a bit more bearable on my ears.
Your favourite things:
The colour green, your box of cars and figures, the iPad, watching the same selection of TV programmes-usually in the exact same order, apples & ice lollies.
Things you do that make me cross:
Pulling out the dog’s fur, climbing on the top of the play kitchen so you can be super close to the TV, climbing on the kitchen sides and tumble drier to help yourself to food, & scratching Ellis’ face
Things you do that make me smile:
You cuddle so hard and you absolutely love cuddles, you are gentle when moving Kinley away from your toys, your growing relationship with both of your brothers-it isn’t your average sibling relationship but it is sweet all the same, how much love you have for your Daddy, how quickly you learnt the alphabet and to write your name-even though you really struggle with holding a pen, & your growing understanding and your ability to now follow simple instructions.