Worried about autistic ds starting primary school tomorrow

[HoppingKangaroo]

My ds starts mainstream primary school tomorrow. I am really worried about him managing the whole day. He still is not toilet trained (he will use the toilet but he does not communicate when he needs to go). He is a fussy eater and I am worried about him eating the school lunches. He is behind on his fine motor skills and can't use a knife and fork together so will need help at lunch time cutting his food up. He can be fussy about food being mixed together and likes pasta in a seperate bowl to the sauce / bolognese. He struggles with emotional regulation around other children especially when it comes to sharing and is very delayed with social communication. He knows lots of facts about things (could answer what is the closet planet to the sun etc) but could not answer what did you do today at school. He can have meltdowns if things are not done the way he wants etc. He has an EHCP but he does not have a full time 1 on 1 help with it. He is advanced in reading and maths etc i think and can read books already its just all the other stuff with him coping a full day with that i am really worried about.

Anyone have a sen child and you worried about them managing in mainstream school - how did it go?

Aww bless you, I'd be worried too.
My two ASD kids were diagnosed later on, they were already at school, so I can't really offer any advice but just wanted to let you know that I know how you feel & I hope everything goes brilliantly & DS loves school, hugs. xx

Bless him, I think for now, just hope the staff are understanding and good at communicating with you but I wonder if he'd be better off at a special school ?

@HailAdrian My youngest eventually went to a special school, it was SO much easier!

Mine does too, he is on the 'severe' end of the spectrum so mainstream was never an option. So, admittedly, I don't know how easy (or difficult) it is to get a place for a 'high functioning' child.

Hi, have you told the teacher all of this? Do you have a way you can email all this to his school ? The more they know the better.

He won’t be the only child who is fussy about food and needs help cutting up, or is tricky with the toilet, or struggles to regulate emotions. These are all things teachers are used to at this age, ok they are not ideal but can be managed especially if you have forewarned the school.

IME it gets a lot harder if these things are still issues as they get past reception but you never know how he will do.

How do you manage toileting at home? Do you make him go at regular intervals and is he ok with that? Can he go independently if he is reminded to? As this is something school could do. If he needs accompanying that is harder.

Sounds like he is a clever boy! At least he won’t be tired out by the academic stuff as well as the social stuff.

How does he sleep - extra sleep in the first term is really really helpful if possible, as it will be very tiring for him. Also DD used to miss the odd Thurs or Friday afternoon if too tired.

Surprisingly well for all three. Two of them had significant language, social and fine motor delays. They all struggle with emotional regulation but so far contained this at school. The afternoons were bad, all the masking and sensory inputs they had to deal with came out as meltdowns after school. One had his sensory issues get a lot worse and things he could have previously coped with like wearing different clothes went into overdrive, I had to scramble to find clothes he could tolerate, that hasn't changed back 2 and years on. It's really tough, but they all got through it.

Would you be able to give him a packed lunch instead? Mine would be completely unable to eat school lunches, 2 of them eat a reasonable variety of food, but it's all as separate components, not mixed together. The less stressors and sensory things he needs to cope with the more chance he'll get through ok.

Communication is key here. I always ask for a meeting a week or two into the term, earlier if necessary. Ensure those staff working with him are aware of his needs and ask what strategies they can put in place to support him. Don't be surprised if he keeps emotions in check at school and lets it all out when he gets home and you see more meltdowns but do let school know as they may not see this and think he is fine.

I have experience of mainstream/asd unit in mainstream and numerous special schools. You will need to be his voice so do not be afraid to be keep raising any issues. The school should make any reasonable adjustments for him (by law) so don't be afraid to ask.

I hope all goes well.

Take it one day at a time and deal with any issues as they come up. Try not to worry, keep busy but have your phone on you for peace of mind - they’ll call if there’s anything to worry you about 💐

You might be best off sending in a packed lunch with familiar food. If they don’t end up eating much just make up the calories before or after school.

Make sure there’s plenty of down time after school with no expectations and excitement. My DD used to lay on her bed with her face in a pillow for ages before she could function again after a long day at school and couldn’t tell me anything about the day if asked but random information came out at cuddle time before bed which was nice.

Half-days can be an option if he ends up struggling.

Re: food. Can you send him with a pack up? That is what we did with ds. (Neurotypical but very problematic with food. He starts Year 5 today and - very excitingly and for the first time - we sent him with a ham roll. (Last year we were still sending him with a roll. And some ham. In different tubs. And not touching.)

My DD (currently on the pathway) didn't speak to anyone for the first week of school and then didn't actually do any of the baseline assessments properly so they thought she couldn't read (also reading full books and advanced at maths by the time she started). There were a few emotional outbursts and she's bitten a few times over the last couple of years but the teachers have been excellent and she seems to have stopped now they recognise the signs and can calm her down. School dinner ladies are often very accommodating. She has everything separately on her plate at school dinner so often had plain pasta with sauce and meatballs on the side. They are also in a routine at school so she goes to the toilet at set points rather than when she needs to run because she always leaves it to the very last minute. Also the last teacher let her tell her a new fact every morning which she loved and settled her into the day. Most teachers are really good and in all likelihood he'll be absolutely fine 😊

Have you communicated al this with the school? In Dts school there were a few kids with toileting issues in reception and beyond. If a child soiled themselves the parents were called to go in and clean them up, the teacher couldn't because of safeguarding. If it was a wee accident same as any of them they'd be given a change of clothes and have to change themselves.

I hope it goes well!

My son started reception yesterday and I'm really worried about him. He is 4 and has struggled at nursery (especially with Covid) but had seemed to settle in the last 6-8 months. The nursery raised concerns with me about my son (behaviour, speech etc) and so he was assessed by our helath vistor (x3 times) and then eventually our local children's hospital for autism but they subsequently discharged him and said he wasn't autistic. It was the same with Speech and Language Therapy, no further action was needed. However, he struggles with routine, taking instructions, sitting down, focussing, eating etc and still has huge tantrums daily! Today when I picked him up (half day) he wouldn't come out of the classroom and started to have a huge tantrem, laying on the floor crying and not communicating and acting frustrated. I may be paranoid but I feel like the teachers judge and probably think he has no discipline/routine at home, which just isn't true. I have an older child (7) who is treated exactly the same and we have never had any of the same issues. I can't help but think there is something wrong and he will struggle in that environment and also that the school will struggle to cope with him. I honestly don't know what to do next, i just feel so helpless and anxious and most of all worried for him.

My youngest started P1 a few weeks ago and is on the pathway to a possible diagnosis of autism. He has huge meltdowns after school. It has been very intense

But please do tell his teacher how things are going at home. They like to know how things are and if there's a way to help with the transition to home or vice versa.

I have been in touch with my son's teacher after he was seen by a paediatrician recently and passed on all our difficulties too.

Also my son is not reliably toilet trained with no2s. Staff are aware but so far he has only soiled at home. His safe space where he is comfortable. Same with all the meltdowns.

I’d skip the school lunch and send him with safe food he can eat no assistance. It seems like an extra unnecessary hurdle.

I have nothing to add but solidarity.

Dd is starting reception tomorrow at mainstream and I’m very nervous. She has a ehcp, still in nappies and is mostly non verbal. I know she’s not going to cope but I don’t really have any choice but to send her.

Are the school aware of his particular struggles? They can adapt things accordingly. With dd she can’t cope with the noise of school assemblies or busy lunch halls so they have said that they will take her in for a minute (apparently they need to for inclusivity) but then take her to a empty classroom to eat etc.

I really hope his first day is a success op!

He needs accompanying to go to the toilet, he can undress and take nappy pull up off etc but needs verbal instructions to help him and he struggles to put his pants and shoes on again. Will that be an issue?
I could take a packed lunch but it will have to be things like plain pasta and cheese and cucumber sticks seperated. He mostly eats pizza, pasta with bolognese separate and chicken in breadcrumbs and doesn't like sandwiches unless bread and cheese seperated

The school are aware from what's in his ehcp about his behaviour and the transition meeting between his nursery and the senco at primary school. I will ask to talk to teachers tomorrow outlining everything just incase

Namechangedforthis12456 thanks, hope the first day is a success for your dd too

It depends if they have a TA ft who can look after the class while accompanied to the toilet. They will need a second staff member in the toilet as well. I'm not trying to make things sound difficult, sorry if coming across that way but there was a kid in dds class who really struggled with this.

I'm the same, I fought so hard to get mines into a base but didn't get anywhere. He can read from adult books/words on screen knows all his numbers and can add and take away but again, he can't ask to go to the toilet or tell you how he feels. I'm terrified for him. He has chronic lung disease and asthma too and can't tell if he needs his inhaler so this is a massive fear of mine. He starts on Wednesday and my anxiety is through the roof. I just keep saying, mainstream schools are different now than what they used to be, the teachers are lovely but concerned that in a classroom with 1 teacher and 25 children, they will definitely miss something. It's horrendous feeling like this, all the other parents I know of children starting school are nervous obviously but excited at the same time. My nerves are shattered. Good luck to your wee one xxx

I am sure if you talk privately to his teacher, she/he will be very understanding. Why not have a sort of system set up where either the teacher (privately, not witnessed by the other kids) or you give your son a "reward" for every time he (correctly) asks to go to the toilet. Like one star for each time and a bonus five stars for every time he asks for his inhaler? Then he gets a reward each month based on how many stars, eg. not so many a chocolate ice-cream, a lot - some bike gear or similar?