Meeting with autism co-ordinator next week to go over reports.

[DishwasherDogs]

Just had a phone call from the asd co-ordinator at the hospital. She wants me to go in next week to go over the reports from ds's assessment last month.

I don't know if there's anything I can do now that would make a difference.

I spoke briefly to ds's HT who was "pleased that I've made the connection that ds behaves differently when he's with me". Which I've translated to meaning she (and others) believe that this is a parenting issue, which dh and I know isn't true.

Is there anything I can do or say next week?

I think lots of people here will be SO familiar with that.

But a diary, maybe video recordings etc help to get across just how stressed the dcs are and that they manage to keep it in at school until it bursts out at home. Actually I don't know for sure that this is what you are seeing, but if it is, it has a nick name 'coca cola bottle syndrome'.

If you don't have a diary, don't worry - just think of examples. Examples can be so telling. Also HT should know from ASD For Dummies or whatever the most basic guide is, that ASD often does this and it has zero to do with parenting.

Polter, she's the new HT in the better school :(

I've found my confidence, but look like a paranoid loon, as no-one sees what we have to deal with every day, and that's fine, we manage, sometimes we even get it right :) But it would be nice if he could lose it in school occasionally so they can see what he can be like!

Sadly this week I've got it wrong and ds has been on fire for 2 days now. He's currently playing with Lego and howling like a dog.

I will be blunt then, and probably cry (and go bright red so they think I'm about to have a heart attack :o).

Trying to persuade dh to let us go private, but it's a lot of money to lose if that comes to nothing.

They have had diaries, a long summary, a DVD which the psychologist admitted she hadn't even seen (which is something I can chase up on) and a report from the OT which shows that he has some sensory processing issues.

It basically came down to 4 people being on the expert panel who have never seen the behaviour we see every single day, because ds masks exceptionally well - too well for it to be asd apparently.

I've already allocated the money, and it is doable, but dh is very cautious and thinks it would be a giant waste of money. I keep trying to tell him that this is what it's there for!

He's also going through a health scare at the moment, so isn't very approachable about anything about finances.

Sadly this week I've got it wrong and ds has been on fire for 2 days now. He's currently playing with Lego and howling like a dog.

You have not got anything wrong. The system has failed you and dc.

You are obviously doing all the things that you can to try to get the system to support you - so I hope everything goes well next week and good luck for the weekend

Thank you :)

You sound in a similar position to us. Dd is 5 and masks well at school just a few anxiety issues there but nothing major. All issues are mostly at home. She is now on an 18month wait for assessment for aspergers. So we have a long wait. What tests did your ds have done?

He was observed at school by a psychologist (she saw a few slips consistent with masking, and said he was constantly watching the other children)

Dh and I had a 3.5 hr interview, it was the autism diagnostic interview - from what I've heard, if your dd masks well, ask for the DISCO interview (no idea what it stands for, but it apparently spots the tricky to diagnose children)

Ds had an ADOS assessment.

We also gave them a summary of behaviours, a DVD showing typical behaviour, a report from the OT we saw privately and a few days of diaries.

Part of the decision was talking to others involved with ds, his HT, teacher, a parent support advisor and someone from enhanced mainstream services.
All had only seen ds in school, where he looks fine.

If your dd is ok at school, try to get someone to observe her somewhere else - supermarket, drs, so they can see what happens, or get someone to tail you and video what happens.

Have got a few things I want to say to the asd coordinator, but I don't know if it's too blunt and will piss them off.
• of the four other people involved in the decision, 2 had already made up their minds that ds is manipulative and we are crap parents, and the other 2 at that point had barely know ds a month, and have made up their minds that he's fine at school so the problem lies at home.
• no-one observed ds outside of school. 1 saw him at home when he was masking. I did feedback that he blew up almost immediately after she left.
• having been through family therapy before (for ds1) this feels like a fob off. What we would like is help for ds to feel more comfortable with who he is (if this is possible), appropriate help for his many threats of suicide and the times he begs us to kill him, I would also like to know that there will be appropriate help when he's older if we're still going through the same cycle of violent behaviour.
• we spend all of our time when ds is at home having to juggle his behaviour, spot triggers and avoid them or help ds through them. Whilst this can be exhausting and disheartening, we are managing, we are doing things that actively help ds and the rest of the family, but it is important that others (school, other family) can understand this and back us up in small ways. Actually, scrap the backing up, we've accepted that this is down to us, but I'm not prepared to continue battling against people who believe that dh and I are the problem, when that is utter steaming horseshit.
• someone promised peer awareness for ds1 and dd. They then refused it. We feel this is important to help ds and dd understand why life is so difficult at times, and help them to understand what they can do to help (themselves mainly, but also ds)

Anyway, long post and will probably think of more to rant about!

I thought I might take a copy of the NICE guidelines with my notes on about the struggles that ds has.

I will write all of this down, because otherwise I'll cry and forget what to say!

I have that and the PDF letter from Dr Luke Beardon, and will also find relevant info in the Tony Attwood book.

Again, I wonder if my version of masking is different to everyone else's.
At school, ds is masking 98%. He has odd slip ups, but these are seen as normal giddiness or naughtiness.

Everyone seems to understand this until they actually see ds, then they backtrack because his masking is too sophisticated. Even though the rest of the time he can't mask as well, or doesn't mask at all. He is so desperate to be the same as everyone else. When he's with us or with strangers, he doesn't care.

Oh and....

• ds not having a diagnosis won't make a jot of difference to our lives! we will still carry on doing the best we possibly can for him! but having a diagnosis could make a world of difference to ds! to have a name for why he feels like this, to be able to understand why he struggles with things that others take in their stride. Eg. He went on a sleepover on Tuesday night, he is still bordering on constant meltdown today. I know that for NT doc it is normal to have a couple of grumpy days following a sleepover, but we are now on day 5, and it is beyond grumpiness, it is an absolute need for control at whatever cost, which is only managed by constant distractions, supervision and gin for the parents

All my , have been replaced with !
I'm not usually that dramatic :o

Dishwasher It is not being believed that slowly kills us.

Yesterday, at the wedding reception DS needed reassurance (noisy, bright flashing lights and loads of people) He touches skin...my back by preference in order to calm down. I don't like it but put up as he needs it. He is sat next to me stroking my arms as I type now...bless him.

Anyway whilst I was dancing at the wedding with DD2, DS walks onto the dance floor pushed his arms up my dress to get to my back....accidentally pulling up my dress at the same time ....such a normal 6yo.

I read your thread Babies, and there are so many similarities.

One of the things that I put on the DVD was of ds shopping. I felt that it didn't show how he usually goes to pieces, but it did show ds (age 9) sitting in the main bit of the trolley biting his fingers.
Ds3 is 4 and refuses to go in the trolley as he's too grown up. Ds2 is 9 and I can't get him into the supermarket at all unless he's sitting in the trolley. I don't know any other 9 year olds who would sit in the trolley, let alone having to be in there to get into the supermarket in the first place.

Just remembered, I have a letter from the paed that he sent me a year ago, saying that ds masked at school, then blew up at home, but was highly likely to get a diagnosis - is this worth taking in?

Looking back, I don't know if he sent the letter because he genuinely thought that or if he was getting me off his back.

Yes he was.

Ds also has asthma, which seems to flare up during stressful times. His first month at the new school he missed loads due to repeat flare ups of asthma. This then calmed down over the Christmas holidays, then flared up again at the end of January and only calmed down just before half term. He's now starting to cough again, just before he goes back to school.

I have peak flow records that show this, would it be too much of a long shot to show them this?