A day in the life – parenting autism while climbing my mountain Pt. 1

Welcome to ‘A day in the life – parenting autism while climbing my mountains.’
This blog might not be what you expect… Good! But different and unique isn’t necessarily bad. I will give you, life as it is for us, the highs the not so highs, the fun and the opposite. My hope is you will get up close to MrsJK and through my eyes gain an understanding of the treasures in my world which will hopefully spread awareness of lots of issues and possibly be an encouragement to some. I’m not here to give you advice just an insight into our world and what we do and why.

I have climbed mountain after mountain in life and struggled with issues around abuse as a child which affected everything else, the way I viewed myself, it caused me to lack self-confidence which then had an impact on choices I made and make and while dealing with all of that I was blessed with two special children who have been diagnosed with Autistic Spectrum Disorder. My past struggles and joys have an impact on parenting Autism too. I have to believe all things are possible in my own life and overcome barriers before I can even start to raise our children to believe that is true. It’s not always easy, never a walk in the park but if you turn left into the woods you might see us there. Life is a journey and everyone crosses different paths. Some of us might walk along the same street for a while but turn in opposite directions and some of us might drive fast along the highway and get to the same place quicker. As we go we all take something with us but also pick up things from others and things around us, along the way that could be useful. So let’s go…!
No two days in our lives are the same. Although there might be lots of routines which are of benefit to my children there is nothing predicable about our days. Actually the complete opposite. I wake up every morning thinking “I wonder what will happen today?”
Today was no different… I woke up as usual at 5am to read and exercise. I’ve noticed since I’ve been exercising I have more energy to cope with whatever my day will bring me. JJ (also known as MasterJK) got up and hovered over me and I continued to battle my way through the plank exercise. When I plank I time myself and I just want to get as many seconds under my belt until I collapse so it’s not the time to have a conversation with anyone. However JJ felt the need to throw several questions at me, asking me what we will be having for dinner this evening as we forgot to put together a menu (I’ll explain that soon) and who will pick him up from school and what are the plans for the evening. Without blowing a gasket I just tried to give him a sign that I couldn’t talk at that precise moment but JJ and gestures and body language don’t mix well. He didn’t see I was in agony trying to breathe through as my legs were about to give way. He didn’t see that I wasn’t able to say a word and the gestures made him even more confused so he just kept on talking. I just gave up on the plank and just collapsed. I could have done more but I had to explain why I couldn’t answer because I knew he couldn’t move passed it and the blood was rushing to my head even faster.
JJ likes to know roughly what the plans are for the day so there’s not too many surprises that he hasn’t mentally prepared himself for. I have to give him a loose plan to allow for any unforeseen circumstances. As he’s grown older he can accept the loose plan but years ago he was so rigid in his approach he needed a step by step guide. This often backfired when unforeseen circumstances arose. Then there would be drama, meltdowns and more confusion. He would cry when it was wet playtime at school. Not because it was raining but he thought he had done something wrong so he was punished by staying indoors. He didn’t quite get that the rain prevented it as playtime outside was on the schedule so why has it changed? It must have something to do with him, he thought.
Nae-Nae (Also known as MissJK) isn’t dissimilar. When I drop her to school I notice that she asks her class teacher what the plan is and the teacher will list all the topics and activities they will be doing in order. This makes me smile but at the same time sometimes it makes my heart jump cos I just pray that nothing changes in that order and if it does will Nae-Nae cope? Sometimes she does sometimes not so well and other times forget it, not at all! But she still needs the list so it’s a win-lose situation.
Anyway JJ sorts himself out for breakfast if it doesn’t involve cooking but ‘Lady Muck’ aka Nae-Nae calls from her room demanding room service. “Mummy can I have grapes and cereal bar and orange juice.” She often forgets the word please so I will ask her to repeat the order over and over again until she figures out that I need her to say the word please. No idea why I torture myself with this and I don’t just remind her to say please cos this way is painful and it takes a good few times before she connects or JJ will intervene and shout “say please” It’s not that she has bad manners it’s just that with the language disorder she focuses so much on getting the instructions out in a coherent sentence that politeness is the second priority.
Nae-Nae is currently obsessed with expiration of food. So when I bring the food items to her in bed – yes in bed (Some days it’s easier not to battle with her wanting breakfast in bed) on cue she will ask what date will the grapes go off? Forgive me but sometimes I have to tell her a date far in the future which isn’t completely accurate oops. This is because she will remember what date I said today and if I gave her tomorrow’s date she will not be touching those grapes tomorrow even though they are still good to eat and if we aren’t observant she will sneak down to the kitchen and throw food in the bin. When things say ‘use by’ tomorrow’s date for example, no matter how many times we explain to her she can still eat that item on that day and possibly a few days after she will not have any of it.
She won’t even let anyone else eat it. I sometimes buy items and leave them in the fridge and they might expire today but I intend to eat in the evening. If I’m not lucky that item will be in the bin before I get home. I have found a way round this. Where possible I will remove the outer packaging with the date on and put the item in a food bag and tell my hubby so we can memorise the date of expiry. That way she won’t throw it away unless it looks mouldy. I know crazy isn’t it? We have to guard the fridge when she is at home and regularly check the items expiry dates and hide things if we want to save them. She floats like a fairy so if we’re upstairs she can get downstairs to the Kitchen without us realising. When we’ve been caught out some days it’s just too funny to cry.

 Take the date label off!!!

Getting ready for school or just going anywhere is fun… JJ has a full blown conversation with himself in the bath as he often prepares for conversations he suspects he will have in the day. I have no idea if these conversations ever actually happen and as he doesn’t always know he is doing it, when we ask him later he has no idea what we’re talking about. It’s a real mystery.
Nae-Nae has a particular bath routine and some days I think to myself why the heck do we entertain it? It makes the process so painfully slow. However it’s seasonal, she does most things for a time and then stops and there’s something else so we have found we sometimes just have to go with it cos if we don’t it’s likely the day for her will not start great and the rest of the day will go downhill. At the moment Nae-Nae has to take her iPad into the bathroom she watches anything random while on the toilet. If she opens her bowels she calls her daddy and me to come and see and celebrate with her. Trust me for her to open her bowels every day is a new and big thing but that’s a story for another day.
Once she’s off the toilet after washing hands in order to continue with the tasks at hand – brushing her teeth and bathing she has to select a different clip to watch. You can’t rush her either. She scrolls through YouTube until she finds the right one for her for the day. It’s usually an episode of Mystery diagnosis (scientific documentary) or Horrid Henry. Yeah two ends of the spectrum, no pun intended. Today the IPad kept freezing so she didn’t move from the basin into the bath until she could get something to work. While this is happening time is ticking and she’s starting to be late. That’s another drama in itself, she has to be early everywhere so what do we do, let her wait for a clip to start working and delay herself, just remove the IPad so she can get on with things or get another device and see if that will work? I know I scream at myself too and say just take the IPad away so she can crack on… But the thing is this will just lead to a meltdown. Some things we can predict and try to avoid. She will be frustrated that she can’t watch a clip but also be frustrated that she’s going to be late but she can’t think forget the clip and get ready, she has to have the clip even for a couple of seconds. So yeah that’s what I did I fetched another device played a clip at her request while she got in the bath to have a quick scrub.
When we say bath we don’t always mean when you fill up the tub. Bathing also means when you fill a bucket of water place it in the bath and you throw water over yourself and scrub with a sponge and shower gel like you would do in a shower. Our parents are from Ghana so this is a traditional bathing approach but we adopted it with the children cos the shower used to make them both scream something chronic. They hated the sound it made, the way it felt on their bodies everything about it. So one day we just thought let’s go back to old skool and we tried it and as if by magic the bathing experiences improved. But funnily enough both kids have now learnt to use a shower when we are on holiday or JJ goes on a trip or sleepover (yes not Nae-Nae cos she has never been apart from us or at least one of us) and for that they get over whatever it was for their sensory mind. Well… Nae-Nae still puts her fingers in her ears to block out the sound when the shower water touches the bath or shower floor directly but is fine when holding it over her skin. It looks like it really hurts her ears and something in her head to hear it. Therefore, it’s definitely not the desired approach so our shower at home just sits on the wall looking pretty.
After considering all of that yeah I’m exhausted too and that’s just the morning routine. According to our work schedules MrJK and I share the school runs for Nae-Nae but I drive JJ to school every day and when it’s my day for Nae-Nae we get up even earlier so she can come with me to drop JJ and his friend who we pick up first.
Today wasn’t my day for her so I let her skip hand in hand with her dad and I went off to work and just listened out for the phone all day cos school can call at any time. If she’s on one, sometimes I’m needed to go in or talk to her via a TA on the phone. It just diffuses the situation. These days are rarer now but in the autumn term when all things are new this is usually the worse term but actually the end of the summer term when all things start to change isn’t great either. We’re nearly there now but so far so good. I breathe a sigh of relief each day I go to work and my phone doesn’t ring. I think I run on the adrenalin of that each day. I’m sure some of you will relate to that whether you have children with additional needs or not. Kids get sick, kids have accidents but some of you might just be better at not worrying about it until it happens. I am learning to relax a bit more and leave things in the hands of the Lord. It’s all part of the learning journey.
So there’s just a segment of our day to start with and I say just cos this isn’t the half of it lol. Please tune in for more wackiness, outrageousness and fun in the JK world. Please subscribe and please share. Sharing is caring as these entries/stories might be of interest to someone else’s journey as they might pick up something useful along the way.
Live happily in all that you have and all that you do. Cry when you have to, but try and remember to laugh and smile in between.
Blessings x