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
Yes, absolutely, he needs support not training. I’m just starting to learn the basic skills we need that underpin what we do on a daily basis, because I was never supported, just expected to learn what everybody else was doing without any explanation. I did learn it only to find that none of it was any real use to me. I think the most important thing is to remember that you’re not in a fight with the school, you’re fighting for your sons right to a supported education. I see so many parents get caught up in the fight with the school and I’m not blaming them or judging them but I see it clouding the real subject of getting the right support. This is why good clear information etc is crucial so the school don’t try to run rings round you. It’s not easy to get the school to stand by their responsibilities. It will be good for you and your husband to learn as much as you can about autism, that way you can back up what you’re saying. For example, it is commonly known amongst experts that children struggle with transitions in school and they have to be approached in a way the child understands. That could mean using picture cards or social stories. There are several methods that can support children. They’re not ways to ‘train’ kids but help them grow at a pace they can cope with so they are not set up to fail and they aren’t being disadvantaged. You want the school to focus on your child’s positive attributes, as you would hope they do with all children. It might also be of help to join a local support group and meet with other parents, because this can get tough, and you will need some support. You could speak to NAS or contact a local disability rights group, so you’re clear about the schools obligations. Getting as much support as you can will be helpful and don’t forget each other. You and your husband have needs as well and this is not going to be a short experience. Make sure you look out for each other and also to not let all this sway you all too far from what matters most, your son and your family. It’s easy to be thrown off balance when our emotions are also heavily invested in it. It’s important to remain positive. Remember our children learn by what they see and I see too many parents getting caught up in the negativity of it all, which is not a criticism, just an observation and getting caught up in the negativity of it doesn’t help anybody. Schools are adapting to a great number of changes, they are also under immense pressure, you don’t want to add to it but accepting inadequate care and support is not an option.
Your observations are spot on and crystal clear, you’ll get the support your son needs. That in itself will be a series of trial and error, because as your little boy grows and expectations change, the support he needs will also change. And that’s ok. If you develop a good relationship with his support workers etc, then everybody benefits.
You said ‘I need them to understand’ ~ this might seem like a small thing but the truth is, you don’t need them to understand anything (that’s not something that’s even in your power or control) but what you do want to discuss, is what support they are going to offer your child. As you said, it can appear complicated, but if you write down your points and what you want to achieve from the meeting, it will help you keep on track. By the way, you haven’t failed at anything. Sometimes we can talk until we’re blue in the face and yet still, we can’t get some people to understand us. They have to be willing to be open to what we are saying. I would simply make some notes, for example, what do you want to say, what do you want to achieve from the meeting. Try to keep it simple and find out what their willingness to cooperate is like. And use tact as much as you can. Try to keep them on your side. Good luck. It is a serious matter but if you have the clear intention to ensure your son gets the support he needs, and you don’t sway from that by getting caught up in obstacles etc, you’ll get the help, and easier than you think. The very most important thing is to keep on doing what you’re doing. You’re doing a fabulous job of loving, appreciating and caring for your little boy and there’s nothing to say you won’t keep on doing that. Keep on enjoying your family and these precious years of your little boys life and know that it is all going to work out perfectly, it has so far and it will continue to do so, even if we hit some bumps along the way. This is why it’s a good idea to get support, get family on board etc and remember to have lots of fun and family loving time along the way. X
Your advice is truly amazing. Thank you so much. The community paediatricians did recommend a local support group, which is only for parents, which admittedly I haven’t looked into. But I think I’m now starting to comprehend the fact that I am slightly clueless. I know my boy, I don’t know autism and the two need to be linked in my understanding. So, thank you so much! I will take all your advice on With full intentions. :)
The support group for parents is invaluable, especially for those moments when you feel all alone and you don’t know what to do. The emotional support and understanding goes a long way in those situations and you support each other in many other ways as well. Knowing your boy is the most important thing but understanding autism helps us help them to live their path, their way, and you’ll get far more helpful support/information etc from the other parents. But more ‘formal’ education of autism is also helpful. The knowledge can be helpful in so many ways and when used for the good of making the world a better place, it is very powerful. But always know that no matter what the behaviour or whatever suggests, you do know your boy and combined with more understanding of autism, you’re all going to work this out. We need everyone on board with this, we’re all learning and we all make mistakes, but what does make us stronger is by leaving the ones who are not willing to listen, and gathering up our own support, together, where we can.