Many people do not realise what it is like to live with a child who is autistic, the simplest of tasks can be a challenge for someone on the autistic spectrum, however there are ways we can make them easier; helping them cope with things we find so simple. I thought the easiest way to describe this was giving people a run down of 24 hours with an autistic child. Now this is just my child and my experience, I realise that children even though they have the same diagnosis as my child, react to different circumstances in different ways, and I’m not saying my way is the right way of dealing with things either. I just want to give everyone, even people without autistic children an insight into what we go through daily. Here is a run down of my day with my son, now of course no two days are the same but there are things that have to be done similarly to intercept the dreaded meltdown before it happens.
Waking up
When I wake, and when I say wake I mean I’m woken up to the sound of him screaming “HEY DUGGEE” and then reciting every episode in order, I know it’s time to get up before he wakes every single neighbour with the sounds of his favourite programme.
Meal Times
We then have to get breakfast, this consists of either brioche or toast… nothing else will do, however sometimes he may forget he’s meant to be eating his breakfast so will leave it on the floor or the chair to either be stepped on or sat on, or just saved for later when he remembers “oh yeah I had a brioche for breakfast this morning.”
Lunch time comes, either jam or cream cheese sandwiches… he flits between the two depending of which one he’s had a lot recently. He has to finish all of these before anything else is consumed and they must be cut in squares and instead of eating them like a sandwich he peels them apart and has one part of each square at a time. He will then go onto his crisps, usually Pom bears and he knows if they aren’t the real thing, believe me, me and my boyfriend have tried to get him to eat the own brand ones, we even put the own brand ones in a Pom bear packet once but there was no fooling him. Once Pom bears are over he might have some cucumber but don’t give him them in sticks, thats wrong, he has to have circles and an even amount of circles lined up not stacked, they must be lined. He may also ask for biscuits which will also be lined up and eaten one by one.
When finally dinner time comes he will usually have one of his favourites including spaghettI bolognese, lasagne or cottage pie, basically anything that includes mince and tomato sauce; he is a fan of anything that’s quite saucy in general and drowned in gravy is usually a hit. Other things I would have to try and try with him but he really struggles with certain foods as a particular smell texture or taste can turn him, obviously we try him with other things but sometimes its not worth the distress and upset this can cause. He still gets the nutrients he needs as I can put vegetables in these meals and he will eat most of them and fruit is one of his favourite things to have as snacks, but if I were to walk in with scrambles eggs he would smell it before he could even see it and heave at the sight of it.
Trips Out
Going out requires an extra 15-20 minutes buffer time for unexpected interruptions that may occur before actually leaving the house. Socks go on first, then shoes, then coat and hat and sun glasses if he thinks it’s sunny enough that day. As soon as the coat goes on though, he is aware we are leaving the house and everyone else must be ready! as soon as that zip goes up he’s off down those stairs, and he will wait at the bottom of the stairs, because “why aren’t you guys ready?!” Now we live on a busy street with cars parked outside most houses and of course my son LOVES cars. He loves to look at the wheels, at his reflection in the doors and tell me every single colour, which yes is very cute, but he has no idea about how close he gets and with this distraction it can take him an extra 5 minutes just to get up our street. Sometimes he would even touch them which obviously isn’t great, so I find walking down our back lane a lot easier.. we walk this route every time we leave the house so he knows this route and he feel comfortable with it. If we went any other way he gets confused and upset and it isn’t worth him feeling that way.
We normally go to similar places and i’ll tell him we’re going to nursery or grandmas house or even the park. From memory he remembers the routes and when we cross certain roads, if we turn into a place he isn’t used to, I pay the price of having to carry him.. all I can say is your arms definitely feel it when this happens.
Trying to go shopping with my boy can be a difficult experience due to the sensory overloads of the shops being too loud, too bright and too busy. I have to make sure I get absolutely everything I need first time round, going in and out of the shops in a way he is used to and if I do forget something there is no way I’m going back into the same shop as this confuses him, because why would we need to go back into the noisy loud bright shop that we have just come out of?
Taking him to the park is an enjoyable experience however he struggles to understand turn taking and social expectations such as queueing. This can be seen when he sits at the top of the slide, completely oblivious to the fact there could be a queue of children waiting behind him and he will still take his time. He is also unaware of danger so you are constantly watching him, wondering where he will run next. At one point roundabouts where his favourite thing and if there were other children spinning it fast he would be fascinated by it, but imagine your child not understand what could happen if contact were made with a roundabout that is being spun faster and faster. The amount of near misses we have had is unbelievable as he would get over excited and edge closer to watch the metal bar coming towards him, and stop is not a word he listens to.
Trying to leave places can be particularly stressful for him as he gets used to a setting and his surroundings. He finds it confusing when we have to do something else or move on from where we are, sometimes this can end in a meltdown and having to carry him far enough away that he cannot get back there, distraction is a strategy I use in hope he will forget what he was upset about in the first place.
At home play
When we are playing at home it is usually very methodical but in his own setting he is very settled and you can tell he just allows himself to be himself.
We will play his favourite game, every day which is writing the metros. This consists of him bringing me his magnetic drawing board and writing “the next station is…” and then a metro station which he has learned in order, even to the point of knowing when it will say please be careful when alighting at this station, or change here for local bus services, and will wait until this is written before we can move on.
He likes to learn through play too. He will recite letters numbers and colours and if he gets one wrong he usually goes back to the start and starts again. Reading is his new thing, he will sit with his favourite book that day and I will read it over and over again until he knows it off by heart and can sit and read it but it must be read the same every single time otherwise he cannot move on to the next stage, to the extent of having to read who it is written by and the copyright pages because no word is to be left unread.
At night
Getting him to go to bed never used to be a problem, once the door was closed he would usually have a little talk to himself and then be off to sleep but recently he has become obsessed with doors and has realised that he can open his bedroom door, I don’t think the lighter nights have helped, so black out curtains are definitely the way forward for my son who has sensitivity to light.
From reading all this you may be inclined to think I’m painting my son in a negative light however that was not my intention. I merely wanted to get across that with patience and anticipating actions, these situations can become less stressful… it comes naturally to me now. I have learnt all his little ways and quirks and established what he needs from me. We tend to have calm, safe and stress free days most of the time, and watching him come along the way he has, I honestly couldn’t be prouder. Doing all these helpful things for him makes him give so much back, the little looks, the laughter and the funny little sentences. An unbreakable bond can still be made and the little things really do matter. You learn to appreciate a smile or a little look so much more. They just needs to feel secure and safe with you and tuning into them helps every day. So if you were to ask me, “wouldn’t your life be so much easier if you didn’t have to do all these little things each day?” I would say, my life may be easier, but it’s about making a world that can seem so scary and full of anxiety to my son, that little bit easier. I embrace spending time doing the things I have to do to make him feel safe rather than him feeling insecure and quite honestly scared of things that we don’t even think as being difficult. Any day of the week, his happiness and knowing that he is content is so worth it. It makes both our lives so much easier and happier.
If you would be interested in attending one of the group sessions or simply have any questions or concerns you would like to raise, please contact Verity on goodtoshare@ymcanorthtyneside.org
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