Sen child who isn't yet sen

[Whoareyoumyfriend]

I feel awful writing this.

I'm so bogged down by parenting one of my children.

The second we wake up it's a battle to keep him on track. Stop him hurting himself and others (mostly accidentally), get him washed and dressed, any homework done, get him fed...usually there is a mountain of food over the floor and him even when he is being calm and sensible.

We have hyperactivity, meltdowns, invasion of personal space, sensory issues. He still isn't dry and will sometimes also have poo accidents.

He's just amazing. Quick witted, kind and has a phenomenal memory. Yet so very intense. We're exhausted. His little brother gets so hacked off with the.constant interference.

He's upstairs with his dad while I write this. I'm making pancakes. All I can hear is huge pitched squawking.

His swim school now provide him with a 1:1 assistant to "make sure he is safe." Yet he hides it all in school. Without school support I feel we are totally stuck with our next steps.

I'm drowning. It's the school work that gets me. We have 3 weeks to make a puppet and draw a map. It'll be a real struggle.to get more than a scribble out of him. Yet school won't get it because he has no issues in school. (Although poor fine motor and struggles with writing)

It’s very difficult. You’re describing what it was like eith my eldest - finally diagnosed at 10 after years of being told it was my shit parenting, I was exaggerating, what I was describing was normal etc etc by school (and they’re all the sand - blame mum, gaslight mum etc etc)

Get used to being in your own, professionals judging you and drowning in paperwork/appointments/battles to get any kind of support

Eventually, after school denied everything as usual, I went to my GP who agreed to a referral (we did it all without any input from school except for some paperwork. They filled that out with basically ‘mums imagining it’ all over it - it was duly ignored) Took two years for a diagnosis. After that - zero support. Had to home educate because of awful bullying and isolation at school. Had to fight the LA for an Ed psych assessment as they were refusing to give us the service because we were ‘home Ed’ (our LA illegally excludes home Ed from services) Ed psych was only partial assessment. It’s all fairly shit. Schools, LAs, even NHS at times would rather blame mum than listen because that may mean spending money. I was even told by LA, after diagnosis, to not bother asking gif a carers assessment because there was no money in the pot so it would be pointless - I never even gif assessed despite asking several times over the years.

Goodness he seems to be ticking a lot of boxes for a possible ASD and dyspraxia diagnosis (same as mine) and perhaps ADHD as well - all three are linked. Does he have his own room? I'd say that's pretty much vital. Does he have accidents at school too? If not it might be because he gets too absorbed in things at home and puts off going till it's too late. It might be worth reminding him to go toilet at certain points through the day. Mine was the same but is much better now.

Have you been to your GP? I went armed with a long list of all my ds's issues. School had had someone brilliant in from SEND to observe him and thought ASD, but his teachers filled out a questionnaire that made him sound completely normal (very bright and well behaved at school) and I filled one out detailing every little issue. We saw an autism specialist (we didn't have to go through CAHMS thankfully) and he was diagnosed in one session, in 30 minutes - he was 10 at the time.

I bet if you saw someone really experienced they'd diagnose him in no time. With the homework I'd say break it down into small chucks and do it with him. Tell him at the beginning of the day that he is going to do X, Y or Z that day 'after lunch' perhaps. Then remind him at lunch time that you're going to do X together after lunch. Then sit him down with no distractions, have dad take his little brother out and do some together. You might find once he starts he actually gets quite absorbed in it, I always found it was the starting that was the issue.

He does have accidents at home and school. Almost daily accidents despite the support they give him with toileting. He hardly self initiates toileting at all. School have asked that we give him a watch. I've set it to buzz every 45m which is great but unfortunately on Saturday we had 4 wet accidents which is impressive even for him.

He has vision issues which doesn't help. Dad is dyslexic but imo DS shows no real.signs of dyslexia I'm a teacher

My friend who is a psychotherapist feels we will get a diagnosis but currently I think we would have to pay. It's super expensive around here. We have a paediatric appointment in the next couple of months so hopefully they will refer again. Last time we did a questionnaire we were told there were zero signs of asd.

My view is that he's too sociable so it hides everything. But they are failing to realise that telling the postman about your bowel habits or the lady in the supermarket that daddy has a car which runs on petrol isn't always appropriate

How old OP?

Five. Year R. His brother is four, preschool

The socially inappropriate things you’ve mentioned in your last post aren’t unusual for a 5 year old IMO! My eldest child is 6 and their fiends often tell me the most inappropriate/random things!

The other issues do suggest something amiss, although how much do the sensory issues etc impact his daily life?

The homework - again my DC’s class WhatsApp group is full of parents describing how they can’t get their DCs to do any of the homework set without meltdowns.

The sensory things are pretty huge. He finds pants difficult, labels tricky. Doesn't like shoes and socks. Bright lights are stressful for him so going into town induces meltdown. Loud noises make him freak

Poor love that sounds stressful, especially with the meltdowns in town.

It’s crazy that he doesn’t have these issues in school. I know children mask but it then makes sense why he has the meltdowns at home, as he is keeping it all in at school.

Poor thing.

Sounds like my situation. My DD has just turned 8 and is masking very well at school. Home is often a nightmare. Her teacher couldn't believe I was talking about the same girl.

Gowithme, can I ask how did you get the assessment without CAHMS? Did you go private? I do intend on making a Dr's appt but I know how much of a battle it is likely going to be.

It sounds hugely stressful. Sometimes the structure and routine of school can really help. Activities are generally predictable, expectations and outcomes are clear. Especially if it’s a smaller class. So he can mask or keep it together enough during the school day but then it all comes out for you after school. I’m sorry that referrals and assessments are so hard to come by for him and I hope things become clearer soon.

If you can afford it find a private OT, get them to do a full assessment including sensory.
School are more likely to get on board when you have a comprehensive independent report. One report can also open doors to getting other reports. Getting a paper trail is essential to getting needs recognised.

I’m also a teacher, an experienced SENCO, and I would say that if your instinct is telling you that something is amiss then you are likely right. You know other children professionally and your own second child and you know your son better than any professional, so stick with it. I have often been really surprised by what parents tell me their child is like at home and it really is quite common, particularly with brighter children who are often able to hold together or mask better in school. That said, regular toilet difficulties and visual impairment sounds like enough for the SENCO to be fairly involved anyway. It might be a good idea to see if there are any local groups of parents or for children you could access locally. As others have said, the whole process of diagnosis or getting support can be frustrating and having others to chat to in a similar boat can be a life saver. Good luck.

Thank you all. He has a paediatrian for his dietary issues. We will speak to him.

He attacked me this morning. My hands and arms are covered in scratches. It's just bloody miserable. I know he can't help it. He loses all self control. I'd never punish him for it as I don't believe it's intentional. But I feel super down about it all today

It may be different in your area, but in ours you can only get a referral for sensory assessment from school, not a paediatrician. It would be worth finding out asap then you can start the ball rolling.

School have refused to refer us for anything as they don't have any evidence with which to refer. It's just so frustrating

If you are under a paediatrician, then they can refer for anything. I was told that a paediatrician was usually involved when the child had needs in more than one area so that they could be the clinical lead for their care, so that’s probably the best route. You can usually request an earlier appointment by getting in touch with their secretaries.
I understand the feeling down. My son recently went through a really awful phase of being incredibly difficult and aggressive and it was a real strain on me and my husband. Our reactions were not always something I’m too proud of either. It’s hard going. You sounds like a very caring and loving mum though, so they’re lucky to have you guiding them through whatever struggles they’re having. I really hope you can get to the bottom of things soon.

I've just had a day alone with me and my younger boy. Its compounded the guilt. Its been so relaxed and lovely.

We've had no screens, done puzzles, been into town, had lunch, been to the park.

Its been so lovely for him and enriching and we've never really been able to do stuff like this

You don’t need to feel guilty about having a nice day with your boy.

Can’t you request via the head that the Ed Psych comes and does an assessment?

He sounds very similar to where my child was in YR. We now have an EHCP. Having been through it myself here's the info I wish I'd had, hope it is useful if not to you then someone else reading.

It sounds like you need support on three fronts: school, home and diagnosis.

Diagnostic
If you have a household income of under £45k exc benefits, you can get a free ASD assessment for him via Caudwell Children: www.caudwellchildren.com/services/autism/

Failing that, try Elaine the founder of Action for Aspergers, who can do a "pre diagnostic" assessment which you could then use to kickstart the EHCP process www.elainenicholsonmbe.co.uk

You don't need a diagnosis to get SEN support at school (although it helps)

School
Depending on how good the SENCO is you might need to nag. They are usually very overworked. If your DS needs 1:1 for swimming lessons then the chances are he is not fine in school at all - having been told for 18 months that our child was fine in school we have been astonished now the EHCP is in place to discover that actually there have been near daily meltdowns, sensory distress, and even missing episodes. And your DS is not independent with toileting / self care, so he does need additional support.

If you have the funds, fund your own OT, SLT and Ed Psych reports. We couldn't afford all three and did OT and SLT which were the main areas of need. OT sounds like the primary one for your DS.

If not but you can do the 'pre diagnostic' report then that should be enough to establish that your DS MAY HAVE SEN and MAY need an EHCP, which is the legal test for applying for an EHCP needs assessment. IPSEA have a model letter. You can do it yourself if the school can't or won't. www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

At the needs assessment the local authority should send an OT, SLT and Ed Psych to observe your child. Ours was really good, the EP picked up some stuff we hadn't noticed. However I know that some LAs are not great, which is why having your own experts is good if you can afford to do it.

It is a battle but if you have to appeal it is manageable.

Home
Can you work out what is manageable and what is not. e.g. messy eating is something we are just accepting for now, although it's frustrating.

Your DS sounds like he is quite dysregulated. Can you try a visual timetable? They are not just for non-verbal children or those with a LD. A now and next board can also be really helpful.

With the homework (a puppet and a map in YR, those are some major expectations!) I would try to take the stress out of it. He's not going to go from zero to independent overnight even with a visual timetable. Put homework in the timetable for 10 minutes. If in that 10 minutes he draws a line and throws the pencils on the floor then no worries, put it all away and do the next thing on the timetable, ideally something fun.

Does he have somewhere safe to go to when he's dysregulated? You can set up a sensory corner reasonably cheaply, just somewhere he can safely crash where it's not too noisy or bright.

You can get label-free school uniform from M&S in their 'easy dressing' range - also good for speeding up dressing in the morning as it's velcro instead of buttons.

And with the toileting problems have a look at interoception and Kelly Mahler's work to help children with poor interoception.

The lack of support is really, really isolating, especially when you're being told there's no problem and everything's fine at school. Sharp elbows, Facebook / MN support groups, and a supportive partner are valuable equipment.

@DogsAndGin

Can’t you request via the head that the Ed Psych comes and does an assessment?

OP would likely be better off looking for hen’s teeth

@RocketAndAFuckingMelon that is all stellar advice - you need to retrain as a SENCo!