@ IEP Review, SENCO suggests Methadol.

[Oblomov]

Ds1(9) , diagnosed AS in Year2, now Year 4, has apparently been fab at school.

Has been horrendous for the last 6 mths/9 mths/year, at home.

So, I go to IEP Review. Why I bother I don't know. He has no IEP because they offer him no support. He currently gets nothing. He was only ever going to social skills group once a week, and then he said he didn't want to go because it was stigmatising him, so that was dropped. He gets NOTHING else. Never has done. So basically there is no IEP. At the end she suggests closing the IEP, (bet she wants to!!!!!!!) but I refuse. So she says we will review it gain, in July.

They tell me that he is fine. Everything is fab. Same old, same old.

So I tell them that after wanting to die, camhs dismissed us with nothing. No support. Camhs said they offered no services, had no social skils groups (even thought he last lady I saw there before said she would sign him up to a 3 course session), they have no funding or facilities. Suggesting I contact NAS to get the list of the local social skills group. I already know the woman form NAS so ring her. Nearest is miles away, or an inconvenient night, costs a bomb and he doesn't want to go. Remind me, what did that Camhs saga achieve, then?

SENCO says I should ask for Family therapy from GP. I have already considerd this. My GP says the nearest is at the bottom of the county, miles away, dh wouldn't be able to get the time off work, I have no childare for the 2 ds's and it would get worse before it gets better, so it was agreed it was pointless for me.

I tell them that he is aggressive, mouthy (mind you so are all his classmates, or so the mums tell me) and has a attitude.
He got banned from binweevils for wrting : fuck, cunt, bitch, fucker, etc. He denied writing anything.
He writes in his diary that he is teased relentlessly and is a freak.
He eats non stop and is skinny, GP says he doesn't have worms. He used to sleep 7pm to 6am, but now is awake at 10.30pm and wakes up at 4am, 5am. He is not tired.
I say that it has been suggetsed to me that he has prozac. But I am not sure.
I tell SENCO ( who came with me, in the end (after much fighting) to the Early Bird + sessions) that 2 of the other boys ( we went out for a meal last week(just the mums from EB) are already on prozac, and the mums think it is great.
Senco seeems shocked.

Senco says that he could take natuaral remedy of methadol. She says it has bene banned, but many of her parents get it from the US.
When I look up methadol, it is not clear what it is. But i can see it has been banned. And nothing about it is naturalistic, or homeopathic. It not a weaker version of calms or Bachs rescue remedy, is it?

I leave feeling totally confused and not sure where to go now. Or just to drop it all, go back to where were were. Being grateful that he is fab at school and a nightmare at home.
As per usual I am getting nowhere with the school, so shall I just give up? I have fought and fought them, pointlessley, and got nowhere, but when I contacted another recommended school, they told me I would never get in there. It's horrible when you feel stuck. And powerless.

Jeez, why is a SEnco recommending medication?? Do you think she might have got name wrong and meant melatonin?

The sleep does sound like a big issue, better sleep might help moods. I am a big fan of melatonin

zzz, when I looked it up that was where the link took me, but lacking medical knowledge , it was not clear to me, what it actually WAS.

Yes, maybe she meant Melatonin.
She seemed very shocked when I mentioned prozac. But then went on to recommend a banned substance, only available in the US? wierd.

hi oblomov
melatonin can be bought in the shops in the US
It has to be prescribed by a specialist here - so a psychiatrist can prescribe for example. I don't think a GP can
CAMHS can prescribe though - my ds has his prescribed by CAMHS
do not buy it online for him
SENCO is crazy to suggest that

Agree Leonie - it is v silly we can't get melatonin over here, when in the US it has been sold for deccades alongside the vitamins in their equivalent of Boots! Do we really think that, if there were any problem with it, someone wouldn't have sued from the US, the world's most litigious nation? I have been using it with my boy for 7 years - no side effects at all, has saved my sanity/marriage, has made him a much happier boy due to 10 hours sleep a night.

what is the reason for it being so controlled over here - does anyone know?
I agree it's life changing stuff - we were also at the brink when CAMHS finally prescribed it for ds.

Still wouldn't buy it online though.

I don't know why Corny - maybe just sheer indolence and inefficiency in the UK medical world. I think that yes someone was being stalked on here by the social and got into trouble for giving her kid unlicensed "drugs" - totally stupid! Mind you, they were probably looking for any old thing to trip her up, hence the stalking.

I'm gonna share what my neuropead/sleep clinic said on the understanding that you'll take into account I have no medical training whatsoever.

Melatonin works for kids who have trouble getting off to sleep in the first place at night, but NOT for those who have sleep maintenaince issues. My own lad wasn't suitable as he goes to bed fine at 7.30, asleep for 8, but then wakes continously from around midnight. He can't STAY asleep. For children like these a different medication type like chlopradrin is more appropriate and melatonin may actually make things worse (eeek!).

I can't tell you how relieved I am now not to have slipped DS some melatonin of relatives who visit the states regularly off record as I would have felt so darn guilty if I'd unknowingly made him worse, based on all the urban myths that melatonin is 100% safe in all circumstances. Desperation meant I did consider going down this route at low points.

For us after much discussion and a formal sleep trial involving a monitor worn at night for a couple of months it was eventually decided that meds aren't the right route. Instead OT balance excercises and a weighted blanket are the best option for us at this time. Meds may be more appropriate & lower risk when he hits his teens. (I'm now in the midst of a battle with SS to get the blummin' blanket.)

I suppose I'm trying to say that there isn't magic bullet for sleep related issues and that it really needs a proper expert assessment to get sorted (if it can be, not every individual can be sorted even with expert help). The appropriate help may be something you haven't even considered.

Frankly I think the SENCO is out of line & that if she feels meds may help the solution then the appropriate thing to do is support a referral to a specialist sleep clinic, not to suggest any individual medication. She's not a doctor, and even for medics it's a very specialist area. Sleep deprivation does have a massive impact so I do rec trying to get a referral to somewhere like the sleep clinic at St Thomas's, part of Evalina children's department.

I take the point bochead. Would slow-release melatonin help those kids who wake in the night?

It's horses for courses, as the weighted blankets etc just annoyed my boy a too heavy and hot.

Oblomov, I would also not rule out Prozac or drugs such as Ritalin (though tried Ritalin and it didn't work for us, but that is irrelevant to anyone elses's experience).

Oblomov - he may be struggling to get through the day in terms of the effort and then unloading when he comes home.

Where are you in the country? Do you think he's feeling isolated and good do with linking up with other kids with AS. There is a social club in our area but you may be nowhere near me.

Do you think reading some books about AS could help? Can he do power points or type on the computer and do a story about what his day is like. He may need some breaks in the day or to do things a little differently to take the pressure off.

Very odd and inappropriate for the SENCO to suggest something that has been banned.

Is the Ed Psych involved?

Ds2 has Asperger's and is now 10. He behaves quite well at home and at school most of the time. However he does have loads of AS related issues which we are working through. Friendship, schoolwork, inappropriate screaming, tyrannical controlling of family time, refusing to switch off telly, no interests except computers and football that sort of stuff Actually he is lovely! And very good companion...Great to take on a long walk or discuss something interesting with. Great enthusiast, adventurer etc.

1. It helped to go to an AS parenting course. It reminded me about what are the triggers for bad behaviour, and how it feels when you don't have a theory of mind. It gave a few strategies for dealing with outbursts. Looking back, I could have read these in a book, so you could too, but you have to take your time to absorb it it you are just reading a book. For example Tony Attwood book to me was impossible to absorb. Even now, I'm now quite sure what his point is, except that there are loads of problem!!!

1. Read How To Talk So Kids Willl Listen. It really helps with AS children, in particular, because sometimes we get so fed up with them we have to rebuild the empathy side of relationship.

1. FT is important because the other kids are important and your AS child will affect your whole family dynamic. How is your Dh coping with your son? Again very important that he knows best way to deal with him, strategies. We went to FT (husband thought it was rubbish admittedly but came to a few) and although she told me very little, I learnt a lot just by being there. I worked things out for myself in course of family therapy.

1. Is there anything at school which is aggravating at home problems? Friendship for example; school should encourage buddying. Social skills groups are not so useful as you might think in comparison to RL learning of social skills, which school should help with. Partnership in projects. Who does he sit next to? Is there any lunchtime clubs they could set up which would benefit him. Ds2 had a Lego Club which lots of kids enjoyed.

1. An AS child needs to feel very safe, so the more you work on beneficial routines and respectful responses, the less "random" stuff he has to deal with the better, even if you think he is being thoroughly irrational and random himself! It helps their sleep too. Bedtime routine is so important. Screens anywhere near bedtime is a disaster for my son. Exercise is very important, green things, outdoors...all that helps sleep. Cutting down sugary drinks.

1. Don't waste your energy getting angry with school, but if they are doing anything which flies in face of your efforts to make him feel calm and happy, go in there guns blazing. I am talking about homework, classroom politics, anything really which he will not be able to cope with to the same degree as an NT child. That is what they have to do to support him, and you are not being precious or pushy to ask for it.

Don't underestimate your own strength, ability and informed love to help him. I think realising that I was on his side, worked wonders in dealing with a lot of problems, also accepting that he did have problems in some areas and I had work with them or round them rather than keep bashing my head against brickwall of his incomprehension.

Sorry I haven't been back to my 'own' thread for a while. I only just noticed there had been lots of new replies.
Thanks for that.

Thanks Cornsilk.

Thanks, I have read the Grandin article. I feel that way, that I don't think he's severe enough to warant medication. And that I may need it later, in teenage years? Oh, I'm just not sure what to think.

Bochead, I think we all agree that the senco was well out of order.

Inappropriate, we have no Ed pysch now. she said that he required no extra support. This was post diagnosis. Senco said "I did TELL you so".

Wilderness, thanks for your long post. I went on the EB+ course and learnt little I didn't already know. I have read some of Attwood, and HTT (a long time before I even knew he was ASD), but I seem incapable of absorbing what the books tell me, because it doesn't seem to help me with my parenting on a day to day basis.
But alot of your posts points are very sensible and I am going to think about each pooint individually.