I used the f word at a teacher!

It’s not like me. I am quite laid back, take things in my stride, try to stay positive and if something doesn’t work- well a shrug of the shoulders and a new approach thought of. I can fight when I need to for my kids but it’s never at individuals, I’m talking bodies like the DWP or LEA.

After the EHC meeting and realising Oliver didn’t fit the school or the dual school placement we did a lot of talking. The LEA are avoiding me, I realised how big the gap is growing between him and his peers, how isolated he’s becoming and I can’t fix it immediately. Added in lack of sleep, end of year disruption at school, assemblies to attend, paperwork to go through as well as everything else I was feeling really frazzled. Olivers class were putting on a performance and one morning the teacher approached me to discuss his role in the play. “He might not sit through it all so he will be near the door in case he has to leave. We don’t want him running around when bored and not letting the kids shine. They’ve worked so hard”.

I snapped. I’m not proud of it but I snapped. “When does my sons get a chance to shine? Every day is normal day why can’t he have 10 minutes to shine? You’ll all breathe a sigh of relief when he’s gone. You’ll be saying thank god that fecking child is gone” said in a very ranty voice and then I cried. I walked off and I don’t know what he did then. Usually I’d have said “can we discuss this in private please so we can find a solution to keep everyone happy” but I snapped. You see he never got to the carol concert at church, or the Easter service or the Mother’s Day assembly, or the music concert. This felt like another exclusion.

A week later and school sends out a text about the disco. What disco? We didn’t get a letter. I went into school and asked to speak to someone about discrimination. I think I’m making enemies everywhere 🙁. It’s up to him if he wants to go to the disco. If he goes and stays 1 minute then that’s his choice. He can decide some things for himself. I got him a ticket and said I’d stay to support him. He loved it. Stayed til the end and wouldn’t leave til others had started going home- he didn’t want to miss a second. He span round, bought glow sticks, lay on the floor, jumped around and chased the lights. He was so happy.

I’ve spoken to the senco and his teacher about how Oliver is a person with likes and dislikes and can express them in his way. I’ve explained that although his progress might not be giant strides but tiny steps, to him and us they are just as valid and praiseworthy. Don’t make choices for him based on his behaviour from before. He is growing and changing every day, like any other kid. Try him out with things before discounting them. He is autistic, he’s a little boy. He is both at the same time. Don’t put him in a box. Don’t assume he can’t! He might not want to, which is a different story, but if he doesn’t try things then how do we know what he can do. How can he learn what he likes and doesn’t. All he needs is equal opportunity.

They did a dress rehearsal for the rest of the school. Popples said he was amazing, he danced and sang. At the parent performance he played with blu tac and slid off the bench. He sat through it all both times though. He was with his class and he didn’t spoil it, he just did his thing and joined in when he felt he could. Of course I wouldn’t want him to ruin it for the other kids, I made sure I sat somewhere where I could intervene if necessary without causing much intrusion. I’m under no illusion it can be difficult for him in that situation. I think things just built up. It felt like he was being marginalised. If I am expected to think of 30 other kids then why is no one expected to think about the feelings of 1?

I have apologised to the teacher. I shouldn’t have lost it. I shouldn’t have swore (we weren’t in the classroom). Being honest his teacher this year has put so much effort in with Olly. Finding ways he can access the curriculum on his level, doing extra work on the resources he needs, actually spending time teaching him. I think he was clumsy the way he spoke to me but I think I was wrong to rant at him. It’s not like me at all. We have a week left at school and I suspect he will now avoid me. I’ve apologised, I’ve acknowledged the work he puts in, I’ve thanked him for his honesty at the ehc meeting but I suspect I’ve broken our working relationship. Popples has a year til she’s in that class, so he has a year before he has to deal with me again.

At the end of the day I’m only human. And I’m the only one who will fight so hard for my kids- all of my kids. They’re all special to me.

Xx

EHC review and honesty

Oliver has been struggling at school. Really struggling. I have been called in on numerous occasions, the inclusion officer and behaviour team have been in and I’ve been in countless meetings to try to resolve some problems. I got so concerned, especially as he’s moving to year 3 in September where it’s a lot of sitting and learning, which he can’t do, I called for an early EHC review.

It turns out he is spending 85% of his time in a 1 to 1 situation or 1 to 2 depending on his mood as it’s too difficult for one member of staff to be with him. He is spending little time with his peers, his recent behaviour has accounted for 90% whereas education has taken the back seat at 10%. He is not doing well in school. There was recently a sports day and he got ready in his kit but stepped outside the door and was overloaded with noise and the sheer volume of people he went into crisis. I tried to find him on the field and was told he was inside. I got to the office and they immediately buzzed me through without signing in. Once I got through the door I could hear him screaming in the hall (down a corridor and fire proof doors) I ran down and was met with two staff who looked helpless and him screaming and bashing things. There was destruction everywhere. Benches overturned, making boxes emptied but I went straight to him and held him tight. He calmed down in minutes and helped tidy up. Took him back to class and lay with him on his bean bag for an hour until he indicated I could go.

In the meeting I was told he was teacher assessed for his Sats (no surprise) and disapplied from phonics test – he doesn’t read phonetically he learns words. I was told that a classroom environment is not suited to his style of learning. The stress of the classroom contributes to his sensory overload. The gap between him and his peers is widening and he knows it. He won’t attempt things he sees others do easily because he doesn’t want to show he can’t do it. He knows he’s not the same. His sense of worth is diminishing at school. He can’t be like them, he tries but he can’t fit in. It’s too much. Trying to filter the sounds and the crowds and learn is just too much.

I’ve talked about dual placement but I phoned the school that offers it and it’s unsuitable for him. Also keeping him in mainstream even part time is going to be of no benefit to him. He’s not going to get anything more from them.

After the meeting we did a lot of talking at home, gathered more information from his teaching staff and requested a further meeting with the Senco. I told her we have decided that he needs a specialist placement. He needs a special school where they sign, use Pecs, have the facilities to let him learn through play and where his peers are like him. There were a lot of tears at the thought of him leaving, they have supported us so much and he leaves a mark on people, in a positive way but they understand that he needs more than they can offer.

Now the LEA are saying there’s no places for him at special school so we have another fight on our hands but we are ready to do whatever necessary to get him the education he deserves. We don’t expect exams and university, we just want him to feel like he belongs somewhere and his achievements whether big or small are celebrated. He has come so far with his language and understanding and his maths skills are phenomenal. I don’t want him to lose what he has and if he goes no further then that’s fine. He doesn’t fit in mainstream school and it’s not fair to expect him to. The pressure he is under must feel immense to him. We have requested a sensory assessment too and this could be easily implemented in a specialist school setting. I hope we are making the right decision, there isn’t another option except this route. I know at home he had calmed a lot but here he is accepted, loved, accommodated and it’s give and take. He does work for me and I play his games and follow his lead so he feels valued and that his ideas are just as important as mine.

It’s been a long and hard month or so and it’s not going to get easier until we get him in an appropriate school. It’s not the autism that’s the problem, it’s the red tape and budget cuts and trying to get someone to actually speak to me. He deserves as much as any other kid, and I will not let him fall through the cracks.

I’m glad his teacher was honest with us. I’m glad school are supporting us. We have plans in place in the interim to reduce the pressure on him in school. We tried mainstream, and it was ok until the focus changed from learning through play to more formal learning. He learns through play and that’s just his style. It’s not a bad thing it’s just different to the norm- but hey it’s our family – we don’t do normal.

Just have to wait for the draft EHC plan to turn up then reject it. It’s no longer appropriate. He deserves the best not make do or putting sticking plasters on it. Change his environment and his behaviour will change. If he’s happy he won’t need to squeeze a tube of paint all over the classroom, or maybe he will cos that sounds like really good fun! 😂

Xx

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