today was supposed to be a good day

Today was going to be a really good day, or at least a good day. I have hope every morning that today will be a bit brighter or less challenging, that there will be more moments of smiles than anxiety or hurt. I was waiting for this day for a while as it had been a milestone day in my mind. First day at a new special preschool.

Im too upset tonight to go into why it was such a bad day, but the usual course of events with everything going wrong from waking up banging and hitting the walls to screaming for “bre bre bre bre” which is breakfast. I am so glad he tries so hard to say breakfast over and over, its just a starting sound of BRE but its something. Sadly if you dont react quickly enough it becomes a screaming meltdown, so I have to quickly use the bathroom and hurry downstairs and start the breakfast routine. Similar to dinner, its a walking on egg shells with pace and accuracy kind of situation. The consistency of the wheatbix with the flavour and the ingredients all have to be there and done in the way which works for him. Then the feeding is tough, all done in pyjamas and a new nappy because the two nappies you put on him at nighttime have filled and overflowed. Then during breakfast or straight after there is usually the first poo of the day. Its a disaster. A puree diet and a big eater and lots of water mean that the soiled nappies are the worst. I love my son more than anything in the world but the poo nappies at nearly 5 years of age are back breaking.

Thats a whole other post on how difficult it is to manage the nappies and how often I deal with leaks of every kind, pretty much every day. Its no exaggeration to go through 5 pairs of shorts or pants in a day. My washing is a nightmare. I cant even explain the constant sheet and mattress drying process. I cant.

So today was supposed to a hopeful day. It started with a major thing being forgotten about, related to medication and it made me feel like the biggest failure. I cant remember everything all the time, but this issue made us an hour late. I was embarrassed to be late.
I was embarrassed at the chemist when the women who work there look at me blankly with special needs related requests. As if I ask for special things for fun. I feel like an idiot. I am running late. I am upset I have anxiety. I am hungry I have had no breakfast or shower. I dont get to have a shower unless I wake up before the kids, but this rarely happens as I am up all night every night, up to 3/4/5 times a night breastfeeding, resettling, making bottles, multiple times. I am so tired. I need 10 min sleep more than the shower in the morning, and I have to settle for a shower at night when I can get someone to watch the kids.

I am late to preschool and I forgot to spray his nose with prescribed anti inflammatory antihistamine spray. So immediately his nose is runny and he is sniffly. He isnt sick its allergies. They are so bad he has prescribed spray. I forgot it. They say if the children have a runny nose, they get sent home.

I forgot his lunch box but remembered his lunch bag luckily. But the lunchbox is important to go in fridge but anyway, I carry on. They must think I am hopeless, I am late, I forget the lunchbox, I forgot his HAT, the key thing they want him to have for play. I cant believe I forgot his hat.

Then they talk about nappies and i offer to show them how i change his nappy. great, I can coach them how he likes it. Instead he refuses to go near the change table, he has a complete meltdown screaming and trying to lay on the toddler toilet floor, three teachers and educators watch on, mouth open, they dont mean to look this way. But I know they are shocked and trying to process what they are seeing, the first ten mins of the new ASD Level 3 delayed child is refusing to let his mother change his nappy. This isnt good. Its not. I am heartbroken and embarrassed and defeated within 10 mins. I am a failure. My son is upset and I am upset. I want to disappear and run away and take him with me. But I have to be keep going and ignore the faces and sound upbeat and positive and offer solutions or ideas. I am too tired. I cant do this anymore. Today was supposed to be a good day.

I have to drive there three times in one day to help with his first lunchtime feed. It went badly, he ran away, he gagged so hard in front of the teachers and the kids that they ran for a bucket, I caught his vomit in my hand and held him close while he gags and recovers. He runs away, he doesnt want the lunch I made him. It is the SAME lunch, same container, same consistency puree meal I make every time , but today he is violently sensory overload gagging. I look like an idiot. Everyone is questioning the food, the container, the high chair, but its just him. It is unpredictable and who knows what set it off. Maybe its the kids sitting nearby , surrounding me in a circle, all neurotypical, all eating sandwiches with their hands, all eating fruit or muesli bars, all self feeding, all swallowing normally. My heart is broken. I watch my poor son gag and his eyes water as he looks at me frightened saying “fin fin fin” hand singing the sign for finish. Maybe its his EOE flaring up. I had missed a few nights of the daily steroid. Its my fault.

I want to finish, but I cant. This is my day, its only just half way through. Today was supposed to be a good day, I had longed for today. I am gutted. I want to scream and cry and I cant take much more. But I keep going. I stay for another 30 min trying unsuccessfully, my baby is now crying, they all look at me like I’m a sinking ship and I can see they want me to give up. So I do. I only have 1 hour now until school is over, so I might as well go have a coffee as its to far to drive home and back. Who am I kidding I wont get a coffee? I have so much to do.

Things dont go well at the shops. Baby is overtired. Baby cries all through the shops. I stop to feed her, there is no where to privately feed her, so I go back to car. I Cry. I have level 9 anxiety and feel like I cant breathe and cant go back in the shops, but I need dinner and food for the kids and things I need for tomorrow school. So I go back, I am sick with nausea and anxiety but I get it done, I dont know how. The baby is recovering from being sick and I dont notice her nose is running down her face. Then i see it. I am embarassed at how many people would have seen her nose. I am so bad at this. I go pick up my son, he is waiting at the fence, he is looking for me, his silent muffled hard to understand voice, I know he needs me. I feel guilty, I feel sad, I feel hopeful that he lasted a few hours but I know he refused to be changed and gagged at lunch time. He is hungry. The poor kid has not had lunch at all. He has only had a snack size yoghurt. They recommend only sending him with yoghurt and small size snacks instead of a normal lunch. Every other day, he eats a huge lunch no issue. I explain this to them, but I can see they think its a bad idea. So I agree. I am defeated and I just hope he will eat better next week.

I am lining up outside the door for pick up. There is a child who is younger than my own son, drinking on a drink bottle with a straw (my son cant do this) lining up next to me waiting to collect their sibling I presume, he is there with his calm and chatty mother (shes chatting to another mum about sport and dancing classes) they are in line, she doesnt even watch the son. She isnt worried he’ll run into a car, or run on the road or run into the paddocks. She is just a normal mum who wont worry about those things happening because my guess is that her son is about 3 and he is asking her “if the engine is off”? I cant believe he can even say engine let alone know what is is. But I have a son who cant say breakfast or water or dinner. So this breaks my heart. Him not running away from her, her ease of lining up and chatting and not being petrified of accidents, I wish I could have this one day, maybe I will. I hope I can one day.

Every day every single time I am around what appear from the outside to be “normal” kids I am reminded how delayed my son is. How disabled he is. How different he is. Some days dont hurt as much as others. Some days its literally like I am shattered from my collarbone to my toes with broken feelings, pain and sorrow. The child says “engine” and he was accurately referring to the car engine. The grief of the loss of normal development and side by side developmental gaps is so engulfing, I feel like am drowning in delays. When will my baby talk to me. Will he ever talk to me? I am trying so hard to help him. I want to hear him tell me his nightmare when he wakes up sweating screaming and scared. I know its bad dream, but he’s shaking and we cant work it out, I cant explain it to him. What is his nightmare?? I have no idea. I Want to know. I’m his mummy and I want to soothe him. Its not fair. I want to scream some nights its so unfair.

My son has a dried bit of mucous on his nose, he is smiling at me, I want to cry and scream out. Why didnt someone wipe his nose? Cant they help him? I feel sorry for him, just because hes delayed doesnt mean he cant have a clean nose? As if settling in with other new kids and friends when you are severely autistic isnt hard enough. Wont someone help him when I am not there. He is happy to see me, he brings his bag. This is is positive. He forgets the lunch bag, I dont know until we get home. My fault, I should’ve checked but I was so anxious I had to leave asap.

He gets in the car seat with my help, he is looking and moaning for my phone, I give it to him because if I dont he will have a kicking the car seat and head slapping meltdown and I Cant take it right now. My baby is watching him, I dont want her to see him upset constantly so he has my phone. I leave. I try to breathe.

I get home I walk him in first, then the groceries, then the baby last. His nappy has leaked, its wee poo and its all down his legs. I sigh. I have to fight him to go get a nappy change. His nappy is on backwards. Today was supposed to be a good day.

My husband holds me as I sob crying later in the night, I keep it all in until then. I cry and cry and I wonder why is every day so hard? Why cant we catch a break? Why cant something be simple or less difficult for once? Why do I have to be humiliated at my own failings and feel so lost and be faced with such hard days every day?

My son comes over and imitates me crying, he makes a sob sound and he says noooo noooo. He laughs, he doesnt understand but he knows I am upset but thinks I am pretending or something. My baby is climbing all over me for a breastfeed. I am so tired. We havent even started showers, dinner and bedtime medication yet.

Today was supposed to be better, a good day. I ache in my heart, I HOPE tomorrow can be less painful. The truth is, its always crappy lately and the better days are far between the hard days. I miss feeling like we had more happy then hard. I miss the days when everyone said “dont worry he’ll catch up” its over, they dont say it anymore. I write this as I am trying so hard to feel better. I am always trying. No one knows how bad things are behind the scenes, I havent even really included 50% of the issues of the day. But its non stop. There is no point listing every time he throws the phone, or screams, or bangs his head or hits his sister on head. OR the dog. This is a new thing, hitting the dog for no reason.

I hope tomorrow is less painful and more happy than today. I love him with my every fibre, I want him to be able to communicate how he feels to me , I want him to not be so upset. I hurt inside for his daily anger and pain.