Friday nights

Friday nights is my favourite time of the week. I think everyone who works M-F loves Friday night. I’m no longer working M-F anymore due to the extended leave I have taken form my job that has been required to care for my son and my baby, so I am home most days in between the constant ping pong of therapy and school appts, so the Monday to Friday routine… that’s not my reason anymore why I ache for Friday night.

I love Friday nights because its the moment when the absolute peak, the most amount of time I will have with my Husband and him being home for the weekend is measured at the most full capacity together. It is the peak volume of time potential that we can spend time together as a family, support each other in every stressful moment and still hold some hope that this weekend, might, might find a tiny opportunity for quiet, calm or rest. Its hard to explain without too much detail, but our son never stops being excessively busy or active or upset/agitated/happy/angry/excited. He may have ADHD or another attention based diagnosis, but that hasn’t decided yet.

There is not many identifiable times in a single day when he is ever “still” or content just doing one single thing alone or with us in calm manner. This is constant, this has been this way for a long time, but has gradually worsened since he was 3 years old. He kicked constantly from the moment he was 3 months old and has never been a lazy, sleepy or chilled baby/toddler/boy. I know a lot of children aren’t, but things such as never sitting on the lounge and watching a whole 15 min of anything on the television, never ever a full movie, never fell asleep on a lounge, floor, chair, anything. He will fight sleep physically to the point of vomiting before he will allow himself to lay down and doze off. At close to 5 years old, this has never happened.

Friday nights as a personal relief or mental switch off, only really begin for us once our son goes to bed, I guess most parents are the same, but the bedtime routine for us consists of a long list of detailed complicated dual parent steps to get this to happen. The same routine applies every single night but Fridays are the most anticipated and provide the most amount of “exhale”. When I say “exhale” I simply mean, I feel like once he’s safer in bed, sleeping and not likely to hurt himself, escape the house, break something, want something etc, I can take a breath and breathe. Even then I have to have the baby monitor in his room nearby so I can hear his breathing for sleep apnea, coughing, choking or crying out. So my ears are always switched on, even when he is in bed.

Most days I feel like the moment he is awake from 7am onwards, I am holding my breath or I am treading water. My anxiety levels ordinarily sit at about 7-8 out of 10. Every day.

I wasn’t always this anxious, I wasn’t always this shaky and full of nervous fear, anger and convinced that something terrible will happen if I stop worrying for more than a moment. Hence why bedtime is such an important part of my day too as one of his parents, my husbands experiences some of this anxiety too, but as I spend more daily time with him, I am more susceptible to being highly stressed and anxious by the end of the day. The constant frustration of the day and the big huge meltdowns, self harm, the feeding, the bottles all day, the nappies, the constant demanding for things with limited sounds or language and the breakdown in our mutual communication is so hard. It is so hard. I cry somedays or most days, just because I feel like a failure of a mother who cant understand his every request or demand based on his sound that he attempts to make, or a gesture. I try so hard to figure it out, like I’m always putting the jigsaw pieces together. He made a noise that sounded a bit “T” ish, then he went to his shoes, ummm he’s banging on the glass door to the backyard…hmm is it “trampoline?” then I try that? And sometimes you get it right, most times, it’s wrong and he gets angry, he throws something, he hits himself on the face or head or slams his hand on a wall. We do all the calm down techniques and he follow all the therapy guidance and coaching, but it is relentless some days, it’s exhausting for him and for me. We are trying. I feel like I make no progress, but I guess we do. But it is so slow. I ache for a day when he doesn’t get upset, let alone a day when he doesn’t try to hurt himself anymore.

Dinner time is a careful process of negotiating with our son (without setting off a meltdown/huge tantrum with self harm hitting/slapping/own hair pulling/door banging etc) to come sit in his high chair he prefers at the dinner table. We have to make his food safe for his eating, which currently is 100% spoon fed by us or a carer. So every meal has been and is currently puree to a soft consistent lumpy food texture (we use a hand stick blender for each meal to make it safe for his swallow) and have it ready at right temp (tempering it with cold milk or cream to smooth and cool it), before we can serve it and the overall the preparation process cant take too long or he then gets upset and throws things near by (his bottle, books, mobile phone, tablet, toys) and gets angry demanding to get out of the chair again.

This is not a calm process, as hard as we try to be prepared and follow the routine which the therapists coach us on. There is so much at play every meal. There is the visual sight based sensory aversions which are so extreme that when he sees a texture he can gag and choke just by looking at it silently and turns away from it, we sometimes don’t even see or hear him gagging. I usually notice the physical posture or the eyes watering running down his face before I realise he is gagging from a sensory issue. I might have to show him I am taking the texture away to calm him down or he has to leave the room to stop gagging, recently he left the room and vomited all over the lounge. We had no idea until 2 min later we went to look for his bottle in the room and found it. He doesn’t tell us, he cant tell us.

Then there is the environment, he avoids looking at the food when he eats, so we sometimes have to bring the food to him in his preferred or chosen bowl. The preferred spoon. We don’t show him the food until he tries the first mouthful as he often screams and refuses to eat if he sees it first and it doesn’t look safe to him. You have to get him to “try” it first then he says “good” and stamps his foot and we know it’s a green light to begin the feeding. Sometimes there is no way to know whats upset him, but if we follow routines and steps that appear to work most of the time, then usually we are ok. This isn’t always the case and sometimes things make him angry, upset, scream, gag, moan before we can even sit down with him to start the feeding. This can be particularly draining if you’ve made him a special meal and its rejected for no known reason but usually we can get it right if we follow the steps we know he feels are safe.

We have to have a bottle for dinner to help him digest his food. It’s a specific bottle with a 12 – 18 month old teat fast flow on the top. This bottle has to be the same every time he drinks whilst awake . It can only have clear water in it. Nothing else, no juice or cordial or bubbles or anything. If it doesn’t, then he will gag, usually throw it across the room and refuse to drink again until he feels safe that the new bottle you give or prepare him at the filter tap, which he watches you do at the sink, is safe again. We have about 4 of those bottles on rotation for preschool, home, etc. I am a bit obsessive with knowing where the bottles are, as he often hides them or loses them under furniture. They are all the same colour, teat etc. Nighttime bottles for when he is asleep in bed and wakes for a bottle are a different colour, they are used for formula which I make up to 3 times a night, sometimes more, sometimes less, but never less than one wake up night. Every single night.

Throughout his meal, he will choke and cough, as he has a special medical condition called EOE (Eosinophilic Oesophagitis) which was described to me by the paedeatric gastroenterologist as similar to eczema inside your throat, causing an ordanarily smooth soft wet foodpipe, to become hard, inflamed, red, and hard ring ridges to form like a pool hose, stopping food from sliding down comfortably, instead described by adults with this condition like a feeling of choking and food being stuck down your throat for hours after your first swallow. When they did the scope/camera of his little oesophagus at 3.5 years old and told me it was severe, I was devastated. Once I processed that, I added that to the list of mental jobs I had to manage and we started more oral steroids to manage and treat it. Thankfully a year later the camera showed it had dramatically improved but he needed to keep taking daily oral steroids forever to manage it. My heart broke.

Every night we are supposed to give him the oral steroid before bed, which is made by me, mixing a liquid ampoule of steroid into a paste with a sweet texture, we use milo and he has that to eat and it is supposed to run down his throat treating it topically, like you would rub a cream into his skin. Instead we do it by eating it and he cannot have anything more to eat or drink after that is taken. So we have to give him all his other medicines, puffers, sprays etc first and then physically hide all the bottles before this is done and take him straight to bed. Remember he is non verbal, so we cant explain anything in too much detail to him. We say “time for medicine” and “its bedtime now” and kiss goodnight, books, bed etc etc, which thankfully he is more compliant with currently as he enjoys the bedtime routine. Which is another set routine in itself, another blog entry on its own.

So when Friday bedtime comes around, I really need it. We really need it. We never ever get a sleep in, as our son never sleeps in, unless he is really ill and usually I am wide awake monitoring his airways and breathing and temperature anyway so there is no sleep in. There hasn’t been a sleep in on any day, Saturday, Sunday or any day for nearly 5 years. We’ve only had about 10 nights completely away from him since he was born and we both couldn’t sleep in anyway, strangely enough, you need it so badly but your body clock just wont let you. Sleep in itself is a whole other post. It’s breaking me physically and mentally but I am trying to work more closely with the medical specialists this year to force a change in sleep, because I cant do another year like this. I genuinely think I wont survive any more 24 hour broken sleep care patterns for much longer. My GP agrees its already unsustainable and I wont list to you the effects of long term broken, shortened sleep on the body and the brain. My husband helps with bottles when I am feeding the baby in the night and on the weekends but he has to work with cutting tools, drive all day long commuting and run a business, so I don’t mind doing the wake ups during the week because we need him to be safe and come home to us every night. A car accident or workplace accident would be a literal disaster for our little world, thats why I am off work so that I can carry those mid week tasks and we swap on the weekends. I appreciate all that he does, I speak to so many other mothers who live with fathers that don’t do any of the cooking, cleaning, care, education, respite etc and the mother still does it ALL. I am so lucky as we share the cooking, cleaning etc and my husband does everything he can such as showers, feeding etc at night to help me get a break and spend time with/focusing on the baby.

When we finally get our son to sleep, we still have the baby to look after but currently its still a lot less stressful to manage her than to have our boy up overtired and highly emotional needing constant supervision. He needs the shut down, he needs the rest, he will not let his little mind or body rest until we put him to bed. So he almost embraces it once we do it. But it will be a short period before he wakes for the first bottle, but thats ok. We can at least all take a breath.

Then he’s in bed, we all exhale and then the strangest thing happens, we start to talk about him, we miss him and we watch videos of him, we share moments of his day, the last few days, stories from his school or the carer have told us. We talk about his medicine, we talk about his development, his nappies, his shower, his trampoline, his feet and anything else related to him. We cant help it. We instantly miss him and all we ever want, is to find ways to make his life better. When he is happy, we are happy. This is a snippet of our night. Every night. Some nights worse, much worse and some nights better, sometimes things are so much better and we cheer and we applaud wins and we dance and we laugh and we get him to bed and its a beautiful night. But this is the rare occasion, I’d be lying and whats the point of that if I said most nights were like that. Most nights are hard, most nights we are watching the clock, wanting to figure out, is it bedtime yet?

Friday nights are my favourite night. At least the anticipation of a weekend spent together, instead of a daily routine at home with the highs and lows of a normal therapy or school or appointment day done often on my own or with the support of my mum (his maternal grandmother or nana we call her) is a nice reward. Even if we don’t get sleep ins or brunches at cafes or social events or calm normal “ish” trips to anywhere really, never the shops or restaurants or activities, then at least we are together and I don’t ride this rollercoaster alone for two days. I don’t know how single parents, let alone single special needs parents cope.

I guess we all just “cope” whether it be single parenting, medical hospital parents, ill unwell parents, the people want to be parents (but struggle), whatever it is that genuinely makes our day a daily exhausting struggle just doing our special kind of life, we just keep doing the hard shit even when we are OVER it, we don’t want to do it anymore, we cant face it, we hate it, we feel sick about it, we want to lay in bed and hide and want to call in sick for life that day/week/month/year….but we don’t. We just do it, because we have to, we have to pay the bills, we have to try to make things better and we love our family. We don’t do this stuff for fun, it’s just what we have to do. Some days I wonder how I slept in until 9am once upon a time so so so so long ago? Why didn’t I go to the gym more when I had the chance? Why didn’t I have more time working in the garden? I guess I’ll work it out later on when this all makes sense to me. Until then, I look forward to the next Friday night.