I am mummy to an ASD diagnosed 5 year old beautiful boy. He’s funny, kind, loving and very special. His areas of developmental delay are typical of that of an autistic child, where his behaviour, communication and social skills are behind. He’s currently in Year one of mainstream school. When he was in reception, he absolutely thrived. The reception staff really seemed to get him. They catered so much for his needs, he came on so well. I thought the same had continued into year one, but I’ve been hit with an epiphany this evening and I’m not sure things are going as well as first believed. Since September, he hasn’t been sleeping well at all. He never has been a good sleeper, but where this seemed to improve, he seems to have gone back to old ways. Since around the same time in September, he has been having a lot of issues with going to the toilet. He struggles to go for a number 2, which will then affect his bladder. He has such a fear of passing a stool, he holds onto his bowel movements for days at a time, which then makes him wet himself multiple times a week. When he does go for a number 2, he screams in pain. He did have an issue with this before, but movicol sorted the problem and seemed to ‘train’ him into correct toilet training. But again, since September, this has been a major issue. So has his diet. Being autistic, he has a limited food intake. He only enjoys food of the same colour (beige) and will only eat the same foods every day. He has struggled since around the same time as his sleep and toilet issues to enjoy these foods, not being able to extend his diet to anything else. We thought all these issues were linked. But have never thought for a reason as to why they’re happening.
I now work at the very school my son attends. I only work two days a week. I’m starting to become concerned about the way he’s settling into his class. Where I thought he would struggle with learning without play, like children do in reception, I believe the more structured approach to learning is of benefit to him. However, he doesn’t receive any additional support and there’s areas I can see he’s struggling. In the mornings, the school expects all children to enter school and arrange their coats and bags accordingly, unaided. Where I’m trying to get my son to do this, even putting extra pressure on him, he just cannot get it. He struggles to coordinate himself. Even though he does know where things need to go, getting him to do it is hard. The same is said for the end of the day. In fact, it’s becomung increasingly common for him to be left alone in his class whilst he struggles to coordinate his coat, bag, lunch bag and bottle and come out. I often have to enter the school and find it concerning that he is left unattended. I’m also aware that he is struggling with lunchtime and being in the playground. Three times since September, the school has failed to provide him with his lunch. He’s struggles with being in the playground and is having many issues with other children and the way they treat him.
Im worried that the school are beginning to expect too much of him. Let it be said too, that at home I have to do everything for him. I have to dress him, wash him, feed him his breakfast. I have to aid him constantly when commuting by foot and generally care for him. These things are not provided for him at school. I feel they expect him to direct and compose himself like other children and the simple fact is, he can’t. They are aware, of course, of his diagnosis and are brilliant at realising that he is unable to communicate and follow instructions, but I think there’s a lot they don’t get.
Could it be possible that the transition to year one has had this effect on him? And is continuing to do so?
Any advice would be so grwstfully received.
Certainly, this has had an effect on him, particularly if nothing else out of the ordinary happened around that time. And transitions from one class to another can be particularly challenging for most autistic children. I’m currently experiencing autistic burnout, at 50 years of age, and I’ve recently realised, that in my current state, any change throws me out. For example, my sleeping pattern has suddenly changed completely, from going to bed relatively early, to not going to bed at all during the night. This puzzled me for a while but with more observation and understanding, I can see that the change from day to night is too much for me. I could go into loads more detail about this but basically, yes, the transition into year one has caused this sudden change in him.
My eating has been affected and when I do eat, I have to keep eating the same thing over and again. I’ve reverted to eating food that I liked as a kind, such as chips with tomato sauce. It’s like the world moves too fast for me and now I’ve shut down big time, and so any change, any transition, puts me back and before I’ve had chance to really process it, life is on to the next thing.
You’re boy needs support, not only with the transition, but with the new demands that are being placed on him, that are coming from all angles. He needs support in the classroom to make sure he understands all the changes etc. The school won’t succeed in ‘training’ him to be like the other kids and neither should they even consider that. He needs support, so he is able to take advantage of the school system and to help him make his way through school successfully. They must not set him up for failure. That can have dire consequences. This is a bright and beautiful boy we’re taking about, with a lot to offer the world, he has got rights, and so do you as a parent, and he deserves and needs some support. He may need time out, during the day, he may need therapeutic interventions, he made need his support work to spend time with him individually to make sure he understands what’s happening etc. They will need to work with you, to listen to you and for them to tell you what they are doing, what’s working etc.
Prevention is better than the cure and no child should ever be set up to fail. His education is not about him learning to be like others, it is for him to learn and thrive in his own unique way and he’s going to need some support to do that. It may also be wise to get some advice and support. What you don’t want is a fight between you and the school, as is often the case. So when you do communicate with them, the communication needs to be clear and coming from a place of partnership but also of knowing your rights and your sons rights. You don’t want to fight with them and you don’t want to waste time going around the houses and ending up frustrated. Your internal atmosphere will effect how things go. From what I’ve heard from quite a few parents, this situation can easily turn into a battle and you want to avoid that at all costs but you also need to be strong and clear with them which is where support and advice is invaluable.
God love your little boy, he sounds like my grandson, such a joy. Don’t let the school push you around. You’ve got clear evidence that starting this new class is having a negative effect on him and it needs addressing now. Good luck.
Cant deny, your reply has actually made me emotional.
For his whole 5 years, we’ve been through such a tough time. When we finally got his diagnosis in December, we thought that was the answer to everything. But I’ve come to realise it isn’t. It is only the beginning. We’ve never seeked support in understanding autism. We understand our little man, but I avoided finding out too much prior to his diagnosis as I didn’t want to manipulate myself into thinking that was the issue when I didn’t know for sure.
Your reply is truly amazing and something myself and my husband haven’t yet received. Real truth. Honest truth. Not generalised words and automatic repsonses from a paediatrician or speech therapist (both services have now discharged him after only two so visits to each) but actual relativness to the situation and what’s possibly happening. Thank you so, so much.
Yes, I will be requesting a meeting with the headteacher and the senco tomorrow. It’s slightly complicated as the senco is his teacher, but I need them to understand I’m not making a complaint. I just need to highlight some issues and seek further support for my boy. I maybe have failed to allow them to comprehend how things are for him at home.
But, your point on ‘training’ him.. you’re absolutely right. Social skills may be able to be taught. Communication skills can be developed upon. But how my little mans mind works and the way he comprehends the world around him, that’s why he diagnosed with this disorder. Because he cannot and will not get how things are. That’s why he needs support. Not training.
Thnak you so much for your understanding and advice. It will go a great way into now seeking further support for my darling boy