Today is Friday, and Friday's are usually spent at nana's. We went as usual this morning, but I planned to take Stanley out for lunch, we were going to see his auntie. I prepared him for this last night, and I prepared him for this throughout the morning. When it was time to go, we got out of the door with few problems, but then it began… he didn't want to go. He was delaying it, and you could see the apprehension. We spent a good amount of time outside chatting about what we was going to do, and just as I was about to give up, and stay at nana's, he climbed into his car seat. When we were out, he was a little nervous and shy to begin with, but soon settled. Then, it was time for lunch. First drama? There was no blackcurrant. Second? The pizza. All he wanted was pepperoni, and there was no pepperoni. But, he was happy to go with cheese… that was until he saw it. As soon as he saw it, he cowered into the corner… he didn't want "that funny pizza"… it didn't look like the ones we make at home. That was it – he didn't touch a thing. People say "if they're hungry, they'll eat", but that really isn't the case. He was hungry, and he didn't eat a single thing. He even had peas – his absolute favourite – but no. The look of the pizza totally threw him. When he's having a tough time, it's things like this that become more prominent – he needs his routine, he needs comfort, and things have to be "just so". The little things become big things. We then managed to have some fun in the park, before heading black to nana's. He got in the car no problem at all, said goodbye to Auntie Tasha, and then the minute we drive off he lost it. He was crying, shouting, screaming… "go away mummy, go away… I just want nana". Eventually he fell asleep, but he had a tough time. There was nothing I could do to help him. He woke up in much the same mood, but eventually calmed down spending some time gardening with Grandad. I can't help but wonder – was it the fact that I took him out when he usually spends the day with nana? It was all new to him today. Why did I put him through this? Could I have stopped it all, and helped, by simply staying at nana's? Hello massive mummy guilt.
My little man heading off to Granny's this morning 💛 Over the last few weeks, it's gradually becoming more difficult to leave him. This morning, he was delaying leaving the house, you could see he was apprehensive… always one more thing he needed to do before he left. When they arrived at Granny's he didn't want to get out of the car, and then when they eventually got out of the car, he didn't want to leave Daddy's arms. He was crying, screaming, and hitting out… and it's heartbreaking. I hate the thought of him being there upset, and I can only hope that when his friends arrive that they have some fun playing together. I find times like this really hard – things seem to be getting tougher for him as time goes on. I hope that in the long run, by getting the PhD done, that it will help us provide better for him. But, it's times like this that I really feel like giving up. I wish I could be there for him all of the time. I wish I could make things easier. I wish I had nothing else to worry about, and that I could put my all into doing the best for him now – when he needs me. Perhaps I would be less stressed without the added pressure of the PhD right now, and perhaps I could do more for Stanley if I could be there for him more. Is it all worth it? But, I've come this far, and I know I'd be stupid to give it up, I just hope that it helps us out in the long run. It's just hard to see the end sometimes, and right now, giving up feels like it would be the easiest option. And, just as I finish up this post – I hear from Granny that Stanley is doing absolutely fine now, and this highlights one of the other problems. People don't see the bigger picture. They see Stanley wanting to get his own way, maybe he's "going through a phase". They see that he is "fine when he's with them" – they don't see the struggles we have to get him there, or the struggles we have at the end of the day… when he gets home and everything that has built up during the day comes out. But for now, I can take a little comfort in knowing that he is ok at Granny's, and knowing that I'll be here, waiting, at the end of the day – for that big squeeze, or the chance to offload, whatever he needs.
Tonight, in the quietest, sweetest little voice, Stanley repeatedly said "stop talking, stop talking, stop talking". This is fine when it's just us, but when there are other people around, who aren't listening to Stanley, who aren't even aware of what he is saying, it's difficult. It's difficult when people don't want to acknowledge what the real issues are – when people see his request for others to "stop talking" as him just being cheeky, or wanting attention, or being demanding. I can see he's struggling. But when others are oblivious to his struggles, it's frustrating. As soon as Stanley came home tonight, I could see in his face how he was feeling, he was tired, he had clearly had enough, and he needed some chill time. He clung on to me, and we went into another room for a bit of quiet. He's started to be much more clingy recently too, and not wanting Daddy to leave when he's dropped at Granny's 💛
Next month, Stanley will turn 3. By the end of this year, we will (somehow!) have made a decision on what school we would like him to go to.
Stanley doesn’t have an “official” diagnosis, we have so far only seen a private psychologist. We are aware of the struggles of getting a diagnosis, the time it takes, and the likelihood that they won’t see Stanley – due to his age, and how well we generally cope (most of the time, of course!). As a family, we do all we can to work around Stanley’s routines and needs, and so there has been no need for us to seek an official diagnosis. I think we are reluctant to seek it due to a fear of him receiving a label, becoming the label, and no longer being Stanley. I’m scared that people won’t see beyond it, and that they’ll make assumptions based on it. Society often needs a label in order to understand, but for us this is irrelevant – we simply want to help Stanley as best we can. If this means getting a label, we will fight for as long, and as hard, as we need.
As we start to think about schools, I start to panic. What if he needs extra support? Do we need a label for him to get better support and understanding at school? I know of battles that people have been through, and I’m scared that we’ll have to face this fight. I don’t want him to have to struggle at school before we can get help – for us to then have to battle to get it – when help could be sorted in advance to prevent this. But, I don’t think this is possible. From what I am told, they are unlikely to touch Stanley – one of the reasons being that two reports are needed – one from school – before anyone will see him. It is my fears of how Stanley will cope with school that leads me to wonder about seeking an official diagnosis. I’m scared that he won’t cope, and that he’ll either be labelled naughty, or that he’ll get missed. So I’m left wondering, do I try and start the battle now, a battle that I am unlikely to win, before school… or do I wait and see how he copes? Because there is of course a chance that he could be more than ok at school without the need for extra support, but we really don’t know… and won’t know until he makes the transition.
This of course also leads me to wonder what type of school will be best for Stanley. How are we supposed to know what’s best? What do we look for? What questions do we ask? Do we mention Autism despite no official diagnosis? Would he thrive more in a small school (<50 in whole school)? Or, would the jump to secondary then be too big to cope with (when this is already going to be a big enough jump)? Would he be better in a large school, with a wider range of children with differing needs and abilities… would this help him socially, or would this be too overwhelming? Do we ask about discipline? Homework? Do we ask how flexible they are to children’s individual needs? There are so many questions to ask. Plus, I have no idea how much to tell them. What do I prioritise? What do I look for in a good school? How will I know which one is best for Stanley? What if we pick the wrong one? What if we choose a school and he doesn’t get in? I want a school that will embrace individuality. A school that is flexible. A school that will work with Stanley, and not try to change him in any way. It’s hard when I don’t know exactly how he’s going to cope and what support he’s likely to need. There is so much to think about, and I wonder at times if I am even overthinking this all too much!
Stanley. By the look on his face here, you would never guess what sort of a day he’s had. It has been so tough, and I am sure that we are both more than ready for it to be over. We had a wonderful morning with friends, but it soon went downhill after a couple of hours. Stanley had a meltdown, and he has since been on edge all afternoon. I must say, we couldn’t have been in any nicer, more understanding, company this morning. It is so refreshing to speak to someone who not only listens, but understands Stanley. Someone who believes us. Someone who can see that Stanley is struggling to cope in certain situations, and someone that goes out of their way to help. No judgement. Someone that is not only aware of Autism, but is accepting, and understanding. Speaking to people like this make me realise that I am not imagining these things with Stanley (because other people really make me feel like I am at times). Other people judge, and it’s often because they have known a child with Autism, and Stanley isn’t like that one child they have met. What most people don’t realise is that one child with Autism is simply that… one child with Autism. The spectrum is so wide, and so varied, that no two children with Autism are the same… and because you have met one, you haven’t met them all. Meeting one child, and understanding one child, does not mean that you therefore understand what all children are like. It is the same with Autism. People won’t accept, and understand, unless they really take the time to be open, to listen, and to do all they can to at least try and understand. Whilst most people are probably aware of Autism these days, I am not so sure that they are understanding, or accepting… and especially when meeting someone who doesn’t fit the stereotypical, media representation, of what Autism “is”.
I think I need some time tonight to reflect on today, and to reassess what we are doing, and what more we can do to try and help this little man cope.