A Day In The Life Of My Undiagnosed Autistic Child

Today started with no breakfast, should have guessed it would be one of those days. Toast is a hit and miss, and sometimes you will have to leave it there for a while and let him take it in his own time. He has been unwell and only yesterday saw him being sick, but thankfully he happily had some milk this morning and kept that down.

Getting dressed became some kind of mission. He wanted socks on but didn’t want his socks on, we finally agree on a pair, and then we went to change trousers, but this was upsetting. We agreed to keep our PJ bottoms on for the day.

To distract him from this clothing issue you grab his jigsaw with the number 1-10 and shapes on. Current repetitive behaviour has him doing this one over and over again. The number 8, however, causes issues. You have to run quickly to help him. Otherwise, this could quickly become a big deal. His little sister grabs a piece who wants to join in and play with him as she would her bigger brother, Dylan, however, does not understand this or want this, he snatches it off her which upsets her, but he knows no different.

His big brother makes a loud noise, and this sets Dylan off, it upsets Dylan so much that Oli is rather apologetic and you can see it in his eyes that he feels bad for making that noise but it wasn’t his fault, he was only putting the lid on the toys. You reassure him while seeing to Dylan. He starts chewing the sleeves on his new top, the new top which you got because he has some rather sensitive skin at the moment. The chewing of the sleeves has started to become an issue. Lately, there’s no way to stop him other than rolling them up, but he does not like having his sleeves rolled up. You buy him brand new clothes knowing that you can pass them on to his sister, therefore, justifying the expense, but in theory, he could live off his brothers hand me downs.

Crisp are on the menu for lunch for Dylan. Of course, you offer him everything going and will continue to do even if it means the dog ends up having a tea fit for a king. Some of the crisps go on the floor, and you need to hoover because of the baby, but then you have a meltdown as you turn the hoover on. Hands clasped on the head and hiding by the doors, and you kick yourself for not getting the dustpan and brush out.

20150204_093718Because he is ill along with his siblings, you cancel a play date you were looking forward to. There was the talk of cake, oh how you needed that cake after the week you have had. You swear your body is still trying to tell you are still unwell and need to rest, but you have no chance. You have to put on that brave face and just get on with it.

He cries, and because he does not talk (other than to count) you have to guess what he wants. He is not very well at the moment, and this has caused him so much confusion. You manage to get him to have some banana to eat, but only you know how he prefers to eat this. You have to peel it and let him break him off to eat; you would not dare give it to him in slices as he hates the feel of that.

You try to make yourself some lunch while some kind of peace is restored but he has gone back to the jigsaw, and he needs you to do the number 8. He comes to the gate with it in his hand; you know the next thing will be him chucking it over the gate and having a meltdown. He is not like his big brother who at the same age would have had to learn the art of patience and the ways of the world. Dylan grasps no concept of any of that, the way he will learn will be much different.

The poached eggs you were making are overcooked but it is ok they are still edible, unlike the omelette you made the other day when you had to pause to see to one of the children. One day you will learn that you should make your lunch while the kids are sleeping but then when you finally have all the kids sleeping at the same and grab that time by the seconds, and it is all yours and all you want to do is collapse on the sofa and attempt some ‘you’ time. You want to do your job, the one that pays the bills. You want to catch up on messages from friends throughout the day, you want to sit and watch a film with the husband, you want to have a conversation that does not revolve around what appointments you have or what the next plan of action is, you want to blog because you enjoy blogging.

20150209_140126You go to sit down with your lunch, but you notice his nappy seems full. He drinks so much that nappies are something you regularly go through as well as clothes if you do not change it quick enough. They are expensive, but at least you are saving money by using reusables with the baby, shame these do not always work on Dylan because of how much he wees and how he has such sensitive skin.

Start to think about potty training and how doing that is so far from your mind right now. Around now your brother had started, and I will never compare you to him or any other child but what I find myself doing is using them as a comparison to what kind of things a typical almost 3-year-old might be doing.

We have some laughing, what Dylan is laughing at you do not know. This often happens that he will just randomly start laughing. As a toddler, he can get away with this. You wonder if this will be something to worry about as he gets older.

The mind starts to wonder throughout the day, and you do more thinking. You think about selling one of your favourite prams, the one you could not wait to use with your daughter when Dylan had finally grown out of prams, but this seems so far from happening that you need to weigh up your options. It is ok for people to suggest buggy boards but some autistic kids have no sense of danger, one wrong move and it could see Dylan in the road. It is ok for us to use one when daddy is around because there is always someone to keep an eye on him. The double isn’t a very pleasant one but thought it would be temporary which almost a year later doesn’t feel oh so temporary any more. The kids cannot sit comfortably in it and the temporary option for Dylan was sticking a cushion behind him and you refuse to try and do this with Charlotte where it could potentially be dangerous. So selling the one you really like to fund a decent double is the practical option. It will make you sad but parenting is all about being practical and doing best by the children not by you.

20150206_114624Flicking switches and it seems you have taught your sister this. She find you hilarious and looks up to you even if you do not give her the time of day. He plays with his jigsaw bus, we love playing this together. You use it to try and teach him the animals and try to match the shapes up. The only thing he is interested in is putting them through the top over and over again. He needs us to open the bus for him and when he is finished he wants you to get them out again. We try to teach him how to open it for himself, we really do. Frustration is something every new parent leaves behind, that gets you nowhere. Time and patience is needed and we will show you again tomorrow.

He falls asleep. You feel bad for being ecstatic about this but it is so rare, and it is happening because he is unwell but it means you can do housework, but oh wait the baby wants feeding. She falls asleep, so you make your eldest read you a book, he is under the weather and would rather be slumped on the sofa watching a film, but school apparently do not like him being ill and want him reading every day which he usually does, but we are kind enough to let him rest completely when ill.

You use the rest of this sleeping time to do some work, draft this blog post, you speak to people online, text friends and you cram as much me time in that short space of time as I can. You would think I have the evening for this, but they are unpredictable at the moment between Dylan & Charlotte.

Because the eldest is off school you did not do the school run that morning and did not get round to getting more milk, the one drink Dylan wants, and he does not understand the concept of running out. You look at the drink cup and note how you must pick up another one because this one has seen its final days. You go through so many drink cups, you always thought it was down to teething and would explain this away using that excuse, but it isn’t down to teething any more or never was.

Life is not as simple as what it could be, some times the days are long and difficult. We are leaning to adapt and change as things change and the days throw new situations at us. Time may give us different scenarios, questions and solutions but in the mean time, we do the best we can.


Not What You Cannot Do But What You Can Do | Taking That First Step With the Health Visitor | Waiting | Not Understanding | I Am Not Alone