Is dual placement the way forward?

I didn’t even know it was an option until after last weeks meeting.

The meeting went as expected. I raised my concerns about the plans not being followed and then asked bluntly what they actually thought he was achieving and would he be able to achieve more in a more specialised environment. There was then the silence and mumbling until I asked “Do you see his future at mainstream”. Then the babble started “our job is to make sure….” blah blah blah. “I’m not interested in your goals. I’m interested if my son is getting the education he deserves”. Now I know I sound a bit of a pompous arse but I’m so tired of their goals, their boxes that need ticking and not my sons education and socialisation. He needs help to be whatever he wants to be. He can’t do rote learning in a classroom. He’s not being difficult. He can’t do it.

After the officials left I spoke to our senco. She said she’d check up on the plans in place, find a sign course and then mentioned dual placement. She is great. She ‘gets’ Sen kids but seems to have to drag the older teachers along with her. She wants the best for him too and is trying hard to provide it. She wondered if we’d considered dual placement and when we looked blankly at her decided we hadn’t. It would mean him going part time to school with his friends and teachers he knows and part time somewhere else, in a specialist school or unit. The benefit being we don’t take him away from all he knows in one go and also we can see which provision is going to suit him better. We don’t put all our eggs in one basket. This will be difficult to achieve with council cutbacks but I also know that if you cause enough fuss, and start annoying your councillors and mp regularly, you can get things done.

We have another meeting in a few weeks but I think this will be brought up by us and see how the land lies. If he does need to leave mainstream then at least he will have had time to make new relationships, it won’t be throwing him in at the deep end. We shall see what happens next.

Xx

Fighting the same fight:-it’s like Groundhog Day

I’ve not written anything in an age because I have been exhausted from having to explain again that just because my son is in mainstream school he is not mainstream.

I have had many meetings with school, I have offered to help with basic makaton, I have demonstrated to the teachers how I deal with Olly’s distress before he reaches crisis and I still get phone calls telling me what he’s done now. I see the caller id and my heart sinks.

3 weeks ago I got a call to say he’d had a meltdown and members of staff had been struck. I went into school and arranged four afternoons to come in and show how I work. We put a de-escalation plan in place for all staff members to follow and we’d follow it at home. Three afternoons went ok, I made notes on where it’s falling down and the fourth afternoon he started cycling up. I tried to follow the plan but his play doh and sand were not available and neither was his emotion fan. He uses the play doh and kinetic sand to squeeze and the emotions fan to pinpoint how he’s feeling so we can understand and act accordingly. If he’s angry, move him to somewhere quiet and dark away from his peers, if sad a cuddle and reassurance. You get the picture. So I’m doing this at home, with good results, more speech, more trust, I think he feels more understood. At school we spent an hour putting this in place and when I come to use it it’s not there. Banging head against a bloody brick wall.

So we have a meeting Wednesday where they are going to try to claim that nothing’s working and maybe he’d be better somewhere else. I will counter with it’s not been tried sufficiently or to standard. But I wonder if it’s worth looking elsewhere if they can not follow a five point plan. He has an EHC and an IEP and it’s not being implemented.

We don’t know what to do for the best. They’re happy to take his extra funding money but not do the work. He will be moving into year 3 in September and he won’t cope with the current set up. He’s autistic. Expecting him to just stop being autistic because he’s in mainstream is ridiculous. A few tweaks and he can stay with his friends. I worry that kids like Olly are being failed because mainstream are stuck in mainstream ways and special school places are very limited due to funding cuts. He doesn’t fit the criteria for special school, he isn’t “normal” enough for mainstream. He’s in limbo. Homeschooling him would be more isolating for him.

We will see what happens this week but I don’t see an easy solution to this 🙁

Xx

He’s not naughty! by Deborah Brownson

hes not naughty

I’ve been trying to find some help on how to explain to a 3 year old the complex world of autism.  She has 2 brothers on the spectrum and asks questions which I do try to deal with “why does Max wear ear things?” because noises hurt his ears so this makes them softer so he can listen without it hurting.  The questions keep coming and the word Autistic has been mentioned which resulted in the conversation taking a weird turn “stick? like stick man?  Is he going to get stolen by a dog and get lost?  I don’t want my brother to go”.

Anyway I came across this book “He’s not naughty” when I was doing some research.  A lot of the books I came across had scathing reviews and many of them were about aspergers where my boys are further up (or down?) the spectrum.  This book also mentions aspergers but is not focussed on it exclusively.  It’s about the issues that people on the spectrum face, the senses are broken down, strangers, behaviour, bullying, feelings etc.  and the trauma it causes them.  It is also beautifully illustrated so although the text may be a bit too much for my 3 year old, the pictures are good for starting discussion.  It’s easy reading and explains things simply, so is useful for anyone starting out on an autism journey, be that a family member, friends or teachers.

It’s written by a mum who lives with autism daily, not by a clinician and it’s very matter of fact.  It doesn’t gloss over anything, it just explains things from Jake’s point of view as told by his friend.  I don’t think my review has done it justice, it’s a beautiful book and I see my sons in the illustrations.  It takes a complex disorder and turns it into manageable chunks.  It’s listed as a children’s guide to autism, but I think it’s an all age guide to autism.  It’s overwhelming, and you get used to speaking in jargon and doctor-ese, this book has put me back on the track to explaining to all ages that He’s not naughty!

 

xx

Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx