A wing and a prayer

Today I ironed the school uniforms, I hung them on hangers, organised and ready. Routines are being practised and are falling into place.
We’ve bought the school shoes, the bags, the stationary (is it just mine that have a case full of pens, pencils, erasers…at the beginning of september, them by october they own just a solitary chewed biro?)
Everything is ready…prepared…and yet I don’t feel we are ready at all.
I try to talk about school every day but when I ask
Ollie how he is feeling about school he only answers with “I feel ok”
I can tell from Ollies bad moods and quick temper this week that his anxiety is creeping up, he’s having more and more “quiet time” as school gets nearer.
There were tears because his new school jumper is “miles too big” it isn’t!
The haircut thats he has been asking for “before school starts” didn’t happen today.
There is a time bomb, and its ticking.
I cant do any more than I have done to prepare us for next week, but I don’t think its enough.
I cant prepare for the moment on wednesday morning when the realisation hits him that he is going to school .
I cant precision plan the bus journey because…well, London buses.
I know that I need to be very calm about the whole thing, but knowing what Ollie went through as his old school and knowing how anxious he must be makes it very difficult to be calm.
There was a time when I was so devastated for him that I wanted to never send him to school again, and now I am 10 months later, and I want my boy to be safe, I’m scared for him.
However much I plan and prepare there are things that hang in the balance, things that can tip the whole thing over the edge.
I know that when Ollie has been in an anxious or stressful situation he often explodes afterwards, I know from experience that it often happens on the way home from places.
Assuming we get to school , I have to bring him home, we have to wait for a bus, near a road, where there will be other people, looking, judging if he explodes, we have to ride on the bus, when he was younger he used to lay on the bus floor screaming and thrashing around before and after school, I have to get him from the bus stop to the house, all the while near roads, people, I have to keep him safe, he’s fast, strong, stubborn…just playing the scenario out in my head is pushing my anxiety through the roof.
Not to mention the worry over his first morning, the first playtime, the first lunchtime, the first time someone annoys him….
I know that this school is right for him, But I also know that the next few weeks ( months??) are going to be rocky, I know that however much I prepare everything will be riding on a wing and a prayer and I’d be lying if I said I wasn’t scared.


The one where CAMHS are useless…AGAIN

Around 6 months ago at our CAMHS appointment Ollies psychiatrist asked if Ollie wanted to try medication, for his anxiety and also to help with his tics, at first I wasn’t keen to medicate him and Ollie told his psychiatrist that he didnt want medication because he doesn’t need fixing.
At our next appointment 3 months ago we discussed medication again and Ollie was more keen to try because he is going to start at his new school, which will obviously be a very anxious time for him. His psychiatrist agreed because school is a major source of anxiety for Ollie.
The psychiatrist told us to take Ollie for an ECG (routine before the meds are prescribed) and then he would prescribe the meds.
We had the ECG done, I took the results to my gp and asked for them to be forwarded to CAMHS.
I then phoned CAMHS and left a message for the psychiatrist saying Ollie had done the ECG as requested and could he write a prescription ( made more urgent by the fact that he is leaving our CAMHS this week)
Today he called me and told me he was very busy handing over his cases …blah blah blah… I asked if he could write the prescription as promised and he said I would have to wait for an appointment with the new psychiatrist which could be in a few months !? (Also that our CAMHS is moving so we have an hour long journey to get there now, which is great with an anxious autistic child who struggles with travelling) I reminded him that he had said he’d write the prescription after the ECG , He replied that he’s busy and did I really think we needed to bother with medication. Well, mr Psychiatrist it was YOU who was keen for Ollie to try them it was YOU who agreed that medication would be a huge help for Ollie when starting school. As anxiety causes most of Ollies meltdowns at school and when travelling to school I think its clear that we need to bother with medication.
He suggested I increase Ollies melatonin dose , which makes no sense, that doesn’t help his anxiety or his tics it just help him to sleep.

He ended the call by saying I would hear from the new psychiatrist in due course and wishing me luck 😡

So despite the fact that Ollies statement says he needs long term ongoing support from CAMHS once again they have left him without the help he needs.
Over ten years now neither of my boys ever recieved any kind of actual help from CAMHS whatsoever, aside from 3 monthly appointments (rarely attended because going out is a huge problem for them both) where they were weighed and measured CAMHS have done nothing.

Now Ollie wont even get help to deal with the anxiety he faces over starting his new school .

There is no service in the children and adolescent mental health services

Its not perfect but its sleep .

Ive blogged before about bedtime with Ollie, its frankly exhausting, Ollie has been going to sleep far too late and by the time he does sleep there has always been tears, tantrums and lots of shouting (all him, i promise) which is a terrible way to end the day.
With school approaching fast I’ve been concentrating on preparing Ollie as much as possible, and establishing a calm bedtime routine (as well as getting him to sleep in his own bed) is a very big part of that.
Getting him into his own bed is proving to be tricky, so for now we’ve struck a deal, two nights in his bed, then one night in mine.
Ollie doesn’t love the nights he has to sleep in his bed, but he knows we have a deal, and it helps eliminate the crying and pleading at bedtime.
Although school hasn’t started yet we are already following the evening schedule from our chart…

Its been 3 nights so far, and all 3 have been a success.
Its been a bit fraught for me, remembering to give Ollie his melatonin at 8:30 on the dot, because its a busy time for me, and being ready to get him up to bed for 9 on the dot is a challenge, but its really important that I stick to the times because it works really well for Ollie when he has a rigid plan, and the dashing about to make things happen on time is totally worth it.
At 9 we have been reading in bed, either Ollie reads or I read his book to him, then we have a quick chat because Ollie wouldn’t be Ollie if he didn’t have a deep and meaningful question or two before bed, then at half past nine we turn the light off.
And Ollie falls asleep, happy peaceful and relaxed.
Tonight he even asked for lights out two minutes early.

So I haven’t got him sleeping in his own bed every night yet but falling asleep at 9:30 is a massive improvement on raging and crying till midnight.
And I’m sure that once the bedtime routine is fully established it will be much easier to deal with sleeping in his bed.

Im going to start practicing the morning routine as well now so Heres hoping it goes as well as the evening one.

The one where we are getting ready for school #autism

The countdown has begun, 9 days until Ollie goes back to school.
In fact he’s starting at a whole new school, in the ASD unit. He has been out of school since november last year, so its a huge change and its actually very scary. Ollie’s experiences at his old school were dreadful so school is a very negative place as far as he is concerned.
Neither the school, nor myself are expecting this to be easy, its expected that I will be staying in the school building for at least the first 4 weeks and that it will probably take a few weeks till Ollie is doing full days so I want Ollie and myself to be as prepared as possible.
Im trying (not entirely successfully so far) to get a good bedtime routine established before school starts, the big stumbling block is the fact that he wants to sleep in my bed. Although tonight he fell asleep in his bed, with no tears by 10:15 pm.
Ive also set my alarm, we are going to start getting up at 7:00 this week, so Its not a big shock to Ollie when he has to get up early for school. (We’ve been waking up at 9 over the holidays)
We have already bought school shoes, and his uniform is ordered, I’ve left the shoes out so he can get used to seeing them around, and I’m hoping his uniform comes asap so I can hang it around the house, little things to help plant the ‘going to school’ seed in his head. Ive also got his lunch bag put where its visible in the kitchen.
I’m mentioning school every day, not enough to overwhelm him, just enough so that its becoming the norm to talk about school.
Ive made some visual charts for Ollie, the morning one is especially important because mornings are very difficult with Ollie. Especially school mornings.



Is there anything else I should be doing that will help prepare us for Going back to school ?
Any suggestions/advice welcome.

The one with all the tantrums. #autism

Its 11:45pm as i start writing this, Ollie and I came up to bed at 9:30 but as usual bedtime was dreadful.
Bedtime with Ollie always goes one of two ways.
He sleeps in my bed, after the usual routine of hundreds of questions before going to sleep, this can take hours. Its usually midnight before he settles (even with his melatonin) its exhausting trying to answer all his questions, I try to explain that its just not the time for all these questions, that he could ask them during the day and we could google the answers together, but still every night, the questions. I love his curiosity, I applaud his hunger for knowledge, just not in bed every single night
Or…I tell him he has to sleep on his bed (which is less than 3ft away from my bed) this is followed by crying, screaming, shouting, full blown rage, begging, more crying and only ends when I let him come in my bed.
Every night Ollie tells me that if I loved him I would let him feel safe in my bed. I do love him, I love that kid completely, totally, and utterly.
But I cant keep doing this.
He needs to start sleeping in his bed, I have a single bed, I also have Arthritis, I have constant chronic pain and I really need to be able to sleep comfortably at night, not holding on to the edge of the bed.
Also he is nine he’s just too big to keep sleeping in my bed. Ollie tells me this is ridiculous because obviously he’s going to stop sleeping in my bed soon.
When is soon? How is he obviously going to stop?
He’s gotten all the way to nine without being able to sleep on his own, that wont change overnight.
Im not abandoning him, I told him I will lay in his bed while he falls asleep until he’s getting used to his own bed but that isn’t enough.
I hate being angry with Ollie and I really don’t get angry with him often. I make allowances because of autism, I understand his meltdowns and moods but I cant help getting cross at bedtime when I haven’t stopped all day and he wont even try to sleep in his own bed.
When I just want to relax and read a little and instead I have to deal with the mother of all meltdowns every night.
I already make allowances, because he wont settle until I go to bed (I gave up trying that when he was 7 after 7 years of screaming rage every night when I tried to go downstairs.
Now Ollie stays up until I go to bed, meaning I have to always be up in bed by ten, and I get absolutely Zero time to relax alone at the end of the day.I also put Ollies bed in my room so he was near me. (i have the smallest bedroom).

I have 11 days to start getting a bedtime routine in place, before Ollie starts his new school. I cant afford to have him tired in the mornings as mornings are very difficult with Ollie on school days. And if he’s tired we will have all the rage every morning.

I have absolutely no idea how to deal with this.

I just want some sleep, in my bed, alone, without 3 hours of tantrums first, its bad enough that the dog sleeps on my pillow

Just a quick question….

I’m trying and failing to get Ollie back into some kind of bedtime routine, one where we actually sleep, in our own beds, without 3 hours of screaming rage.
Ollie is very very curious, he has endless questions and wants to know the answers right now, “I don’t know” or “lets google it in the morning” is never an acceptable answer as far as he is concerned.
I actually love his curiosity, I just wish he wouldn’t save most of his questions until bedtime.
Tonight I told him he could sleep in my bed (I was desperate for a night-of-no-rage) but only if he understood That I wanted him to sleep and not ask me endless questions in bed. He understood, he wasn’t going to ask me questions in bed….

At 9:55 I gave him his five minute warning for bedtime…
“Id like to ask a quick question before bed mum…
How do you think Polio is getting on, have we eradicated it yet?
Also Why did Bill Gates call microsoft…microsoft? And how do you think he came up with idea for microsoft? Also…which capital city would you choose to live in if you could live anywhere…and tell me your reasons why.”

*bangs head on wall*

one of Ollie’s latest tics is

Jeremy Kyle sat on a blimp

We are in bed at 1:30 in the morning, he’s asleep.
He just sung “Jeremy Kyle, sat on a blimp, and he fell off the very next day” to the tune of “the eye of the tiger”

I’d love to peek inside his head.