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

198 replies

EnglishRose1320 · 07/02/2017 22:41

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.

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FrayedHem · 28/02/2017 19:40

Is there anyone who can come over to help you? Do you need medical attention?

EnglishRose1320 · 28/02/2017 22:45

Sorry for not replying, it's been a long evening that isn't over yet. Oh got home mid meltdown and a friend came over as well. He continued to scream, hit, kick and trash his room for several more hours on and off, mixed with patches of just sobbing. I felt/feel completely useless. He said he hates worrying and if he was dead he wouldn't have to worry anymore. Feel like I have totally failed him. I ache all over and my left thumb is bruised for being bent backwards, I suspect my chest will have a bruise and my shoulder feels like an old injury is playing up but I don't think I need anything more than pain killers and sleep. Which I hope I get soon, he is calmer now but still refusing sleep.

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FrayedHem · 28/02/2017 22:53

No need to apologise, I'm glad you're OH and your friend were there. It's extremely stressful and you must feel completely ragged. You haven't failed him, getting access to the support he needs is proving to be very, very difficult, but you're on it and fighting his corner very hard.

I hope he gets off to sleep soon and you manage some rest.

EnglishRose1320 · 28/02/2017 23:13

We find out secondary school allocation tomorrow, I'm not sure he is going to sleep until he knows where he is going. Hopefully he will fall asleep sooner than that though.

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FrayedHem · 28/02/2017 23:22

Year 6 is just so much pressure and uncertainty. I hope the allocation comes through quickly and it's your preferred choice.

EnglishRose1320 · 28/02/2017 23:37

Thanks. We received another appointment for him in the post, a consultant appointment, it's on the same day as one of his Sats, I am very tempted to not change it and let him miss one of the sats days altogether.

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FrayedHem · 28/02/2017 23:52

I wouldn't change it unless they could offer one very close to the date they've given tbh. I think school have some flexibility for children off sick to do the test when they are back, so they may insist or be difficult but really they have spent your goodwill a few times over!

EnglishRose1320 · 01/03/2017 07:27

That's my feeling, it's meant to be an emergency appointment for self harming and it's not until may as it is. Oh is worried about him missing a sat, I'm not that bothered.

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taratill · 01/03/2017 09:41

Oh no sorry things are still bad. Hope you get your first secondary school choice. We are awaiting ours for our Son. Because our son isn't at school at the moment he is not aware it is going on so he is not anxious about it.

It's so difficult when they are with friends who are going on about all of these uncertainties, SATS, secondary etc.

Has your son had any input from Speech and Language in your local authority? We have an appointment with a SALT specialist on Friday who is a specialist on social stories and transition for ASD kids from primary to secondary. We are in a very similar position to you as we have not yet had a formal assessment (will be in May) but the initial 3DI test came back with a positive indication of Childhood autism/ Aspergers.

Have you read the explosive child? It is useful for dealing with the meltdowns and seeing them from a different point of view.

Flowers
taratill · 01/03/2017 09:42

Oh and SATS are only really important for schools results, high schools worth their salt will soon work out where a child should be and should understand if there are special needs reasons why they are not done.

I used to care about SATS but not anymore.

BiddyPop · 01/03/2017 13:46

DD(11) has Autism (aspergers dx, when it was still called that). A few thoughts that may help. (I am only on page 1 of the thread yet so apologies if you've moved on or someone else has already said these).

Teeth - we make it part of the routine before bed, it is necessary, we constantly ask about having done "wees and teeth". Extending music from toilet to teeth makes sense. Also - does he hate the toothpaste? DD hated mint, really hated it, for a long long time so we were using the bubblegum or strawberry flavoured toothpastes for young children up to about 6 months ago - we've only just moved on to mild mint versions.

I know you can get some toothbrushes that are soft plastic that fits on a fingertip - would that work better than a proper brush?
Would he tolerate a swish of mouthwash to help as well?

Also, do you use timers at all? Would he accept needing to brush for 60 or 90 seconds until the timer goes? (School dentist was very strong on it to DD, about needing to brush for 2 minutes, so she was better after the professional told her - and we use timers a lot anyway for all sorts of things both cooking-wise and DD-wise).
We're lucky as, despite the dodging that we've gone through, DD is reasonably good at brushing teeth. We also have a really good dentist who is great with DCs - DD had to come with me a few times when she was small so saw me getting checked, then another visit lay on top of me with his special sunglasses and saw his light and mirror and he had a quick look, then on top of me he showed her the air puffer and water puffer and had a better look, and eventually she lay on the chair herself with me sitting beside her feet and my hand on her legs that I was still there.....could you get back to first principles to reduce the fear?

Definitely pursue the back pain - we've had times when there was nothing physically apparent but DD was in pain, we've had it all checked out and she has understood that, but sometimes we actually found that when it was being followed up, and she was getting pain relief as needed (on medical advice), other anxiety or stress things were coming out and as we had time to talk about them, her stress levels reduced and her pain would reduce as well - unexplained belly pain seemed to be anxiety related but she also has actual problems with recurrent ear infections showing us she has a very high pain threshold (not saying anything a few times until the eardrum had burst).

When she was having a LOT of meltdowns, particularly in school, one thing that really helped her cope was to reduce her overall stress levels rather than trying to address the specifics of the meltdown. Sounds odd. But it's a bit like, she had a petrol tank of ability to cope - when she was stressed in general, that took a lot of the petrol in the tank so she only had a small bit left over to deal with any new thing happening so meltdowns came very quickly. But when her overall life was calmer and more relaxed, she used less petrol dealing with the everyday stuff so had more petrol when she needed the boost from someone else winning or hearing an extra loud noise that hurt her ears or having to do something difficult in class or a bully getting in her face (yes we've had issues in school with that too!)....

We did things like tried to make sure that when she was having fussy times with food, we didn't focus on that but made sure there was some food she would eat (and she still has a large drink of milk at bedtime - sometimes hot chocolate now, almost always warm, but that's as much about getting calories into her as an aid to get her to sleep). Reduced choices down to just 2, and sometimes even just presenting a fait accompli when making a decision was beyond her (although working on decision making when less stressed). She was allowed to go into a quiet space away from the bustle of home life, cool and dark and calm, either to chill normally or especially when meltdowns were happening. We worked on relaxation techniques with her, and did things like rubbing her back (soothing) or letting her have long baths and playing with her rubber ducks (water soothes a lot - but sometimes showers can feel like needles on her skin so baths tended to be better). We tried to have clothes that were comfortable to her - soft tracksuits, cut out labels, seamfree underwear etc. Fidget toys to get anxious energy out. And reassuring her that we loved her lots - spending time with her, getting her to help with chores working together, reading to her in bed even long after others her age were not getting stories, even now she listens to audio books or talk radio in bed, that sort of thing.

We've also tried to talk to her about building her own coping mechanisms- so knowing to go and tell an adult in yard if there's a problem rather than acting out when provoked, telling us that she is having a problem, learning to walk away, do deep breathing, take some rescue remedy, do a scrawly colouring picture to get anger out, run a length of the pitch to get too much energy out....and sometimes about breaking things down into smaller chunks. So do 1 problem of maths at a time, typing her spellings or poems into her laptop as a way to help her learn them (she seems to be a "rote learner"), having a few minutes to play a game (on a timer) in between some subjects before coming back to do something else in homework, allowing her to do reading curled up in a comfy chair not straight at the table, or sometimes getting the book on audiobooks to read while listening to it (particularly when the reason to read it is more about knowing the story to discuss it as a group in school than actually being able to physically read it) or finding it on my kindle so we can increase the print size (while she's well able to read, she seems to have problems with large amounts of small print text).

I hope that there's something there that's useful.

BiddyPop · 01/03/2017 13:58

Oh dear, I am sorry to hear it has got so bad.

It does sound like your DS is having a very hard time at the moment, and that you are doing your best for him.

When he is calmer (and I hope he is tonight), are there things you can do other than homework to just help him relax? Would OH or you be able to have a game of chess if he does enjoy it? Or have a long walk together with no particular agenda (if he's not looking at you, or rather, not having to do "face to face" discussion, he may start to talk about things that are bothering him - and the exercise will help reduce stress as well)? Even a drive could help him have the "space" to talk. Get him to talk about the latest thing he's doing on his robot, or the story of his current book - something that he's interested in. Get him to have a bath, or shower if he enjoys them. If he can make a decision (as in, not so wound up that he finds the decision itself impossible), get him to choose, and possibly help make, dinner.

And maybe, if he'd tolerate it, do some other "relaxation" stuff at home. Have nice gentle music playing in the background, use some lavender or chamomile aromatherapy oils, have a real fire or some candles lighting (there's something about watching flames dancing), and more gentle than harsh lighting in general, that sort of thing. Without saying that these are for him if that would put him more over the edge.

BiddyPop · 01/03/2017 14:11

Oh, and I've found that often she comes out of school or afterschool club like a raging demon. She's now able to go home herself 2 afternoons a week after afterschool activities, and goes to a DAunt a 3rd afternoon - so they are much better evenings as she's already unwound herself. But I keep food (chocolate, some jellies, dried fruit, cereal bars) and water in the car and often find that if I give her those and ignore the damburst, letting her get some sugar, water and quiet for 2-3 minutes, she may start to actually tell the story more calmly, actually making sense, and also start to come up with solutions as we talk it out. But engaging with it too early, right in the flood of that dam-bursting, means pretty much going into complete meltdown and that continuing with slamming, violence or whatever at home (she may yell and cry but never leaves her seat or tries anything physical in the car - TG she learned that one early on!).

EnglishRose1320 · 04/03/2017 10:33

Has been a manic week since his big meltdown. Up and down week really, he is currently furious because his brother has touched something he shouldn't have touched (an umbrella that belongs to neither of them) he keeps flying off the handle for very little. We got his second choice of school, which I actually think is best, it isn't so strong academically but has a strong Senco team. His consultant appointment has been changed, they have decide he needs to be seen sooner so that is later this month. I'm glad things are speeding up with appointments, feels like I spend hours of my life chasing things. It needs to be done though, he broke down the other day in floods, says he worries about everything and if he was dead he wouldn't worry anymore. Thank you so much for all your support and advice, am currently reading the explosive child- thanks taratill.

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FrayedHem · 04/03/2017 11:02

I'm glad the appointment has been brought forward and people are now listening to you about DS. I think supportive SEN staff is everything in secondary school and I hope they can work with you to put together a good transition plan.

EnglishRose1320 · 04/03/2017 22:24

Currently screaming the place down, has been for nearly an hour because I said half 9 was too late to make biscuit mix

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BiddyPop · 06/03/2017 18:10

Oh dear, I am sorry to hear you've had a bad few days.

Occasionally, if we can see that there is not a lot of energy left for coping, and that DD really needs to actually do something physical, we will allow something like baking late in the evening - rather than end up in the negative spiral. It's so hard to catch and err on the right side - sometimes they are trying it on, others they really need something to distract from other worries and to just recharge their own coping skills.

I am after a few tough days too, so reminding myself that you get over the crisis however you can, and then work on reducing the overall stresses/worries so that DD's ability to cope with "regular life" only takes a small amount of energy, and that if something happens that she needs to deal with - she has a reserve of coping energy to change how the chairs are laid out or to walk away to a quieter space if there is a young child screaming (which hurts her ears) or if there is a lot of messing in class because they are all stuck indoors with wet breaks and not using up some energy outside. Or whatever.

It sounds like your DS is up at the top of the scale on managing to cope - all his energy is going into just about managing. Hopefully you can work with him to get over the crisis and come back down a bit, so there is still a reserve there for when small things go wrong.

And always reassure him that you love him, and that his DB loves him too. Sometimes he may be hard to live with, but so can everyone - but you do love him. ANd point out a few specific things that he does that you love, stuff like that, to get the positive energy going again. And that you are working on trying to help him (like the Cons apt) - but there are lots of people who need help, (people who are just like him - if he'd see a comparison as positive?) so it takes time to see and help everyone. But that you are all doing your best to help him.

EnglishRose1320 · 06/03/2017 19:51

Thanks for the advice Biddybop. Sorry to hear you've had a few rough days as well. Hasn't been a great day today but everything seems calm now. Have been out to but his own tent for after school club and he is just about to test it.

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EnglishRose1320 · 07/03/2017 16:39

DS has just been permanently banned from breakfast and after school club, no other child care option available.

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FrayedHem · 07/03/2017 18:53

oh no. Is the club run by the school or by an outside company?

EnglishRose1320 · 07/03/2017 20:11

It's run by school. So he is now refusing to ever go back to school again. I can understand their concerns but the situation was handled extremely poorly to say the least

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FrayedHem · 07/03/2017 20:20

In that case, I would do a blow-by-blow written complaint of all their failings - there's nothing left to lose now. Have you applied for DLA for him?

EnglishRose1320 · 07/03/2017 20:30

Oh half and i have decided to apply today, need to work out how now

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FrayedHem · 07/03/2017 20:36

Have a look at the Cerebra DLA guide Cerebra Guide
It's also worth googling family support for children with SEN/disabilities type charities in your area as they may have someone who can help you fill it out.

EnglishRose1320 · 07/03/2017 20:44

Thanks, just deciding whether or not to take him to my parents for the rest of the week so he can have a break from school and we can get things in place. Then need to make the big decision about becoming a sahm, today is the first time ever oh has realised that probably needs to happen.

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