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What do you wish you had known or done when your ASD child was 8?

(18 Posts)
Shellywelly1973 Mon 13-May-13 11:07:39

Ds is 8. He has a dx of ASD & ADHD. He struggles with severe anxiety which manifests as extreme physical & verbal aggression. He also suffers with OCD. Which at the moment is really affecting Ds.

He's in a AS specific special school. Has been since he was 7. He attends Camhs. Hes on Equasym XL.30 mg & 4mg of melatonin.

He's terribly lonely. Has no friends. Has never been able to attend a club or any child typical activity even the ones connected to school. His behaviour since Easter has deteriorated. Hes very physically aggressive at school on a daily basis. I met with them last week. He's been assigned a 1-1. His OT has been increased to two 1-1 sessions per week. His counselling has also been increased to two sessions per week. School wise, i feel they are doing all they can. They recognise Ds needs & hes very complex as well as very very unpredictable!

My question is what else can i do? I worry about his mental health. Hes a highly intelligent child & in some ways that makes him harder, though I've always hoped, in the long run it would be a blessing.

My question is really to parents of older children / teenagers. What else can i do to help him cope? What do you wish you had done or tried? Any advice or information anyone could give me would be greatly appreciated.

HotheadPaisan Mon 13-May-13 11:55:41

Worth trying a change of medication?

CalicoRose Mon 13-May-13 13:02:37

Would you consider any alternative therapies? Or supplements?

DisAstrophe Mon 13-May-13 13:10:03

Do you think the school is right for him? Even if it is a good school for others it might not be the right place for him. Is he happier and easier in the school holidays?

Some local authorities run a social skills group for kids with hfa - could be someone to make some new friends.

Or perhaps he would like a pen friend - with your support to compose letters.

ouryve Mon 13-May-13 13:11:14

DS1 is only a year older, so no earth shattering wisdom to offer you, but he has a very similar profile to your DS. He's still in mainstream, which he has completely outgrown. Up until now, there's been no other option which caters for him appropriately, academically, but we're pushing to move him now he's grown into a nearby AS/ADHD/SEBD school. Unlike your boy, he's not lonely. He favours the company of adults and has his best conversations with himself!

Two things I have noticed. One is that most kids of this age become a lot bolshier. They're well and truly moving out of infancy, becoming more self aware (though that's pretty distorted in DS1's case) and autonomous. So there may be some simple growing up coming into play.

The other is that DS1's behaviour is far more difficult when he's unwell, particularlt if he's bothered by allergies or tummy upsets - both of which he's rather prone to. I've finally bitten the bullet and got a referral to a paediatrician to see if we can sort out if there's any connection between this and diet.

DS1 likes to feel in control. For example, there was a huge cloud over yesterday because he had homework and didn't want to do it (he finds the literacy difficult and the maths beneath him, so he says). He'll quite happily picks up an off the shelf work book and spend hours working on the exercises, though!

It might be worth looking up PDA ad seeing if any of that rings true. We'd already worked out the strategies for myself before I'd ever heard of it, but they really do help to temper the explosiveness.

PolterGoose Mon 13-May-13 14:41:41

Like ouryve I'm only a little bit ahead of you, ds is nearly 10 and in MS. When you say he is lonely, is that your observation or his? Maybe controversial but could he be having too much intervention at school which is raising his anxiety? If he's talking about what's going wrong all the time then it is going to be hard to feel good about himself confused

When my ds is at his worst we almost need to go right back to basics, timetables, routines, planning, lots of food and indulging special interests, lots of sensory activities, walks in wild countryside, no demands or pressure.

The illness thing is odd here, ds is at his best temperamentally when he has a fever, all his sensory and ASDisms go.

zzzzz Mon 13-May-13 15:11:38

I think the temperature thing is a known phenomena I think,

http://ajpregu.physiology.org/content/283/6/R1370.full

http://scienceblogs.com/neurophilosophy/2009/09/19/the-social-thermometer-temperature-affects-how-we-perceive-relationships/

< mini polt spends rest of childhood par-baked!>

infamouspoo Mon 13-May-13 15:24:09

that he wasnt his diagnosis. And that he would change a huge amount and he went from a child who wouldnt leave the house and screamed and flapped and refused everything except pasta and couldnt go to school to a lovely young man who is now at university, comes home a lot as he thinks students are annoying but is doing phenomenly well considering no-one thought he'd ever be independant.

PolterGoose Mon 13-May-13 15:41:36

Ahhh, that's lovely infamous grin

zzzzz thanks, I've come across the research into fever thing before, it is quite remarkable in real life, un fortunately ds is rarely ill.

PolterGoose Mon 13-May-13 15:43:07

(as an aside, zzzzz was it today you were having your boulder zapped? or have I got that wrong?)

ouryve Mon 13-May-13 15:49:13

We can almost tell DS1's temperature by his behaviour. We know it's 39 because he's incredibly quiet. When it's 38, hide!

salondon Mon 13-May-13 16:02:55

infamouspoo - If I can write 1/2 of that for my daughter in 15 years time, I will consider myself very blessed. She is only 3 by the waysmile

infamouspoo Mon 13-May-13 16:38:50

if you'd have met ds between 2 and 11 you'd have never believed it possible. He has HFA, sensory integration disorder and probably a whole bunch of other stuff After he had to leave school at 6 we never saw another 'expert' and the internet didnt exist back then so we had to figure stuff out alone.
He can describe some of what it was like now - he says that all vision and sound was like it was right up against his face and pushing. Same with smells and textures.
There's still issues of course. When he is here he tells me all about the essays he is writing. In detail. Great detail. If he finds a youtube video it has to be watched RIGHT NOW and he's a big Hitchens and Dawkins fan and will spend ages telling me why religious people are just plain wrong in the way only a person with aspergers can. He has to have a fan at uni to block out noise and unlike other teens I get daily texts and fb contact. Plus if I go out he texts me to make sure I'm ok and know what time the buses are grin and he's the one who takes care of drunk housemates and makes sure they are safe.

zzzzz Mon 13-May-13 18:24:07

infamous that sounds dreamy! Mine has been out of school for a year and we are truly going it alone but I think independent living might be a stretch for my little muddle.

polt the machine is broken sad so all postponed till next week. I am trying to remain calm about it all, but it is rather exhausting.

infamouspoo Mon 13-May-13 18:53:09

wasnt dreamy at the time. It was hard and lonely and tough on the other kids. But there wasnt any support back then.

zzzzz Mon 13-May-13 18:56:40

I think you'd be surprised how little has changed, I am not overwhelmed with offers of support. That said most of the time I am so enormously happy in comparison to when he was melting at school that it's not time for violins. grin

Shellywelly1973 Mon 13-May-13 22:52:15

Infamouspoo- you've described what i envisage for Ds. I really hope so.

Ds is exactly same concerning running a fever. He hardly ever gets ill but i know its awful, i realised life is much quieter if he's ill.

I appreciate the comments about the school possibly not being the right school. I do have concerns but the alternative is home schooling & i know i can't cope being with Ds 24 hours aday, 7 days aweek.

We use an alternative therapist, she's been working with both of us for about 4 months now.

Ds says he wants someone to play minecraft with...he's not totally aware of why he finds certain things so difficult.

Thanks for your replies...

Pixiedust1973 Tue 14-May-13 15:28:37

The no 1 thing I wish id done for my daughter is change her school rather than wait until mid year 6. She only got supported & helped in school just over a year ago when we moved area. She is now 12 & was dx after one term at secondary school in year 7 despite being under CAMHS in our old area for over 5 years & completely failed. If I could do it all again id of got her the help she needed sooner. I didn't realise how different things could be until I moved here though. Sounds to me like your sons school are making the effort but perhaps they & or you need to start looking into ways to improve his social skills so he can get along better with his peers. Maybe clubs outside of school could be a starting point rather than ones attached to the school. Good luck. smile

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