Still waiting for autism assessment, still not coping, still looking for answers

[EnglishRose1320]

So I have been hiding away from mumsnet since last summer mainly because currently life is literally just a case of going from one tantrum to the next with the odd crisis in between. Don't get me wrong we do have good times mixed in but they are getting harder to maintain due to heightened aniexty.
So before I waffle on a quick summary, my eldest DS is 11 and waiting for his austism assessment. He is in the final year of primary and started it by getting excluded for the first time ever, has since refused to go outside at school and tries to run away so often that the school have put him on a final warning for breakfast club.
This year we have to manage sats, a new school and I have to have a minor op that has a six week recovery time and all of those things seem completely impossible to me atm.
The biggest day to day issue atm is the evening routine, the screams about homework, eating and teeth brushing. Any tips on making these things easier?
Sorry this is a bit of a vague post just feeling completely drained and hopeless atm, the older he gets the harder it is and the less confidence I have to deal with it all.

That sounds v tough.

My knowledge is only based on my own experience, but inthink stress and anxiety make things FAR worse so pick your battles. Homework? No. Talk to the senco and explain the impact it's having on the family. His education wont be destroyed. Sensory stuff is a massive issue so teethbrushing maybe real agony. There are three sided toothbrushes, or just let him choise his own and do it in his own time. Eating? He wont starve, just serve what he likes and if he doesnt eat, offer cereal and nothing else.
By the sounds of it these arent tantrums, they are meltdowns and when he is having one there is absolutely no point in doing anything except waiting till it passes.

To an outsider, parents of kids with autistic traits can look like indulgent fools, bullied by their iwn children. But it isnt like that. Hang in there. Whatever gets you through! X

By the way, how are school managing him? What has caused him to be nearing exclusion? What is happening at breakfast club that he cant cope with? The poor lad!

Sorry things are so tough.

Totally agree with breathandexhale - tell the SENCo homework just isn't manageable atm. As he is barely coping during school, crossing it over into home-time is counterproductive for them as he can't decompress and it is encouraging a negative cycle. Say you will try but will not apply pressure.

Teeth brushing - does he have a tablet & headphones? DS1 copes better if he can distract himself a bit although it does extend the total time spent. I've been letting DS1 eat dinner in his room - he simply cannot deal with other people's food noises and smells atm. Again, not ideal but he is a similar age to yours and he is bubbling with anxiety and anger. Is that a possible issue for your DS at breakfast club - the sensory side?

The SATs stuff is just bloody hard going. Rightly or wrongly, I told DS1 that the government puts pressure on schools to get good results. We talk about how this is a bit silly, as all children have different strengths and not to worry about his results as it won't affect him.

Have you spoken to Secondary? Maybe try and get his primary to work with them to work out a transition plan.

I hope you op goes ok and you recover well.

Thanks for the replies.

The school are really hit and miss and that's a big part of the problem, they put things in place but only keep them going for a week or so and then drop them with no warning. He had his days exclusion for punching the child that had been bullying him in the face even though they shouldn't have been playing against each other in tag rugby because the school were aware of how DS wouldn't cope with that.
DS eats at home before breakfast club or often just refuses to eat at all, we never make him eat there. The main issue is not the actual breakfast club but the fact that I am leaving him at school, hates it what ever time I drop him off but later on and his teachers can take him rather than the over stretched breakfast staff but due to the fact that I work in a school I can't change my hours.
Teeth brushing wise the tablet is a good idea, he listens to music and audio books when he goes to the loo so extending it to teeth brushing as well is a good idea.
Eating at home, he does eat in his room is we are having something that he can't tolerate the look or smell of, for example a curry. The latest issue is he just doesn't get hunger cues and will not eat much during the day but have a massive meltdown if we don't let him eat a 10 at night. We give him dinner around half 5 and then he is allowed a evening snack of cereal or toast when his younger brother goes to bed but knows he can't eat after 8, this evening having to pick between either cereal or toast was too much, sometimes it's fine, sometimes not.
Sats wise we tell he that is something that happens in yr6 but it's about checking on how the school is doing not on how he is doing, secondary school wise we can't do any transition until we know which school he has got in to.
One other issue we have atm is for the last 3/4 weeks he has been complaining of severe back pain and it seems to making him even more likely to have melt downs and also very tearful, the doctor's can't see anything wrong and just feel he ought to keep taking pain relief for as long as needed, I do feel frustrated because one of his biggest aniexty is going to see any health care professional, waiting in waiting rooms etc and he has literally been begging me daily to take him to a doctor, he wouldn't go to a doctor when he needed surgery on his toe so I feel it is quite genuine pain and that something is up.

Thanks again for replying, he is finally asleep, in the wrong bed with his school uniform still on but asleep!

If you're not happy with the GP response, (and I wouldn't be given your son's distress) maybe ask for a phone consultation or just go by yourself and request a referral on to a paediatrician, and if no joy look at complaining to the practice manager. Is puberty likely? DS1 started puberty about 6 months ago and his appetite (and mood) is huge. He is also very resistant to going to bed and we get all kinds of weird and wonderful reasons why he can't. I'm pretty lax and as long as he hasn't brushed his teeth I will generally allow a sensible snack as he barely eats anything for lunch so over the course of the day it works out about right.

Do you think your DS could break down which parts of school are causing him the greatest distress? Someone on here recommended breaking the day down maths/English/art/lunchtime etc and getting the child to put a happy or sad face next to it. Perhaps if you could identify the bits he's really struggling with and tackle those it may help with the general hating going to school. And hopefully make drop-offs easier.

Food wise I think on the whole we are fairly relaxed but due to the fact he has dental issues (because of the lack of brushing) we have to limit snacking anyway, it feels impossible to keep every element of him healthy, save his teeth and ruin his sleep, avoid aniexty and risk his diet.

Breaking down his school day is a really good idea, I will try that, I know lunch is a trigger but I feel it is more than that so would be good to try and break it down.

Sorry for all the drip feeding of information, I try and avoid writing essays on here but then I feel I have missed lots of information out.

It is very hard, DS1 is very similar and it's a precarious balance that's never quite achieved. He really like having his own personal toothpaste that he keeps in his room which has also helped.

How willing are the breakfast club to work with you? Could they accommodate giving him a specific bit of space to go to when he gets there where he could sit and read/lego/other activity? Or is it the moving on into lessons that is causing the upset?

The time before last when his aniexty was really bad we had a meeting and it was agreed that a tent would be provided for when he needed to be away from everyone else instead of him running off, so far no tent has appeared and i know i need to keep pushing but I am so exhausted, I know they view me as the nagging parent, I also know that shouldn't matter to me but it does.
The last time he had a few days of running out or destroying things they told me they felt it was too distressing to the other children and if it happened again he would not be able to come, they banned him from coming the next day and I said that was fine but he would have to miss school because my only emergency childcare is too far away to do school drop offs, they quickly back tracked and said they could have him but he would have to go to the deputy head but nothing more permanent gets sorted.

Yes he has had cavities, several, treated at the special care dentist with hours of panic attacks and hyperventilating before sitting in the chair. They floride coat his teeth every three months. He doesn't like electric toothbrushes and he didn't cope with the disclosing tablets when a dentist came to school, might be different at home. He likes the toothpaste we have found when he will brush his teeth. He does like gum. I haven't heard of waterpik, what that? Thanks for your suggestions

Ok well I think you are going to have to turn into That Mother and come down like a ton of bricks on the school. Notwithstanding a formal diagnosis, your son has a lufe long, life altering disability, and the school need to treat him as such, instead of a troublesome pain in the arse. Whst they are doing re stopping and starting interventions is exactly the same as putting in a wheelchair ramp and then taking it away again. It is not on. Balls to whether they think you're pestering.

Re SATS, withdraw him. Say it makes him too anxious, and he wont be doing them.

And that attempt at an informal (and highly illegal) exclusion? Put it in writing that you wont be having that, and want a meeting with the SENCO asap to discuss how best to support your child with his needs. Firmally request the LA Ed Psych to come in and see him, and go back to your GP and outline all if your concerns re anxiety and request another paed referral so you can get to the bottom if what is going on. I honestly think you need to do this now. Like, today. My kids are much younger but from everything ive read, if you have issues now, secondary is going to be like the ninth level of hell.

Yes I think your right, I think I am going to have to ignore what they think about me and just go for it. I'm going to request an urgent meeting with the senco today and call the GP to book an appointment (three week wait atm!)
Sats is a tricky one because although he doesn't want to do them he also doesn't want to be different and the three children that aren't doing them get taken out of all the revision sessions to sit in another room and go on I pads.
I did have a phone consultation with his lead teacher the other day saying pretty much that r.e intervention, I said I appreciated that staffing could be an issue, I work in a very similar environment but I would rather they offered slightly less consistently, rather than all or nothing.
Secondary school current feels me with dread, last time I spoke to the autism team they were confident of a diagnosis one way or the other by the end of year six, one of the schools we have applied for will support either way and have a lot in place for children like my DS so hopefully he gets in, it's out of catchment though.

English Rose, I completely sympathise, I am in a very similar position with my year 6 son who is currently being assessed for ASD. He is having such a hard time at school for reasons he isn't able to express that he is now barely attending at all. The mere mention of it is now causing tantrums / meltdowns. He is trying to run away, has also asked for the tent! and has threatened my daughter who is 7 and I with a cricket bat.

I have decided to sign him off sick for the rest of the half term as he is sick (anxiety) and we need to take the heat out of things.

I am struggling with how it is not 'giving in' to his fixation (that he hates school) but safety and my sanity now has to come first.

So I would say just try to take as much pressure out as possible to give your self and him a break as it could get worse if you don't.

I agree with the pp who said remove the homework and the SATS as in the long run they don't mean much.

Really hope things get better for you soon.

I hear you re what the school think of you. What helped me was my friend who gently pointed out that everytime i felt like that, i was prioritising my discomfort over my child.

I think you need to drive the diagnostic process, as fast as possible. In my region it is done by a community child development team. I rang them in desparation and got a paed appointment very quickly, with one of my kids. With the eldest, things were more complicated and i had to fight for him to be assessed but we got there in the end, by my haunting every healthcare professional i knew in order to get things moving.

Have you applied for DLA? If not, do it, it isnt means tested, and maybe it could go towards some private assessments?

Re school interventions, in my experience, unless you drive and monitor them they just drift and that is inexcusable. Staff issues are not an excuse. School are legally required to make adjustments for him.

I really feel for your son. Imagine if you felt that way about your job? Tears, physically reacting, feeling terrible all the time, you'd resign. He can't. That must be terrifying.

I have decided to sign him off sick for the rest of the half term as he is sick (anxiety) and we need to take the heat out of things.

Good for you.

I would definitely withdraw him from sats. Some schools put pupils under enormous pressure in Y5 and 6. It's shocking what has happened to the end of primary school.
Your ds might be picking up on the stress and pressure the teachers are under.
For anxious children, school can be a nightmare. So much is expected but there is only so much some children can take. Anxiety plays out in many ways and is often misinterpreted and labelled incorrectly.
Can you hurry the assessment up?
Do you work full time?
I really understand what you're going through. Just do whatever you need to do to make your ds's life less stressful.

Sorry, just re-read your last post and I think you need to make the decision about sats. If they are doing revision sessions already in early Feb that can't be helping your ds's anxiety.

Thanks so much for all the ideas and encouragement, I have contacted the school and asked for an urgent call with the senco by the end of today, not heard anything yet. I have made a doctor's appointment for his back and I have left a message for the austism assessment team to give me an update.
He was sad going in to school today but he didn't scream. He said lunch would be okay because he would hide inside by the fish tank again, I need to know if anyone knows where he is at lunchtime, there have been lunches before where no one knows where he has been.
Homework wise he loves learning in his own way and in his own time, every evening he reads and most evenings he will write a bit of a story or work on his robot in my mind that's enough so I don't push homework too much. He knows if he doesn't do it he has to do it one lunch time and that means a lunchtime when he is safe somewhere inside where it is quiet.

So the school didn't contact me all day, I popped into the office and they said I would get a call and I didn't. Trying to decide whether to keep him at home tomorrow or not.
The Autism assessment team didn't call back so will have to call them again tomorrow.
The doctor however listened and made some suggestions, referred him to see his paediatric consultant again and really engaged with him which was great.
My son didn't have a good day at school and hid in the cloakroom for all of lunch.

I would absolutely keep him off. Poor love!

I kept him off school for breakfast club and said he wouldn't be coming in until I had a meeting with someone, surprisingly enough I had a meeting at half 8 and he came to school at 9 with a plan in place. Hopefully this plan will actually last. Last night he screamed and tried to hurt himself for nearly two hours, then calmed down only for it to start again, cried himself to sleep and woke up crying repeatedly, I feel completely lost when he is clearly so unhappy.

Your poor DS. Are you happy with the plan?

Yes if they stick to it and if they support him with the elements of it that he will find harder, so for lunchtimes he will be allowed to stay in the classroom to eat his lunch and then twice a week he will be allowed to stay in for the whole break but three times a week he will go out, so on the days he goes out he will need to know which meal time assistant he can get to if he is panicking about something. I made it very clear at the meeting that although I thought the plan was fine it would only be fine of they stuck to it because it's not the first meeting of this sort and they are great at having solutions but they either try it once and stop or never actually do what they suggest.

Do you have a staff member you can contact frequently to see how things are going? Would they fill in a home/school diary so you can find out what's happened and keep them focused on helping him?

One of the points that came up in the meeting was the home school diary and the fact that I can write on it 5-6 times before I ever get a response from the class teacher, hopefully with the new plan that has been addressed.