Possible Aspergers - school refusal advice needed

[Ampersand44]

This is my first post - not sure how to write this without producing too long an essay, but basically we are parents of an 8 year old boy who has sensory processing difficulties and possible Aspergers (Community Pediatrician in process of organising diagnosis).
After two years of struggling we have come to the end of our ability to get him to school on time, and regularly do not get him there at all. He is extremely anxious and just curls up in a blanket and refuses to move - often followed by major meltdown.
Have had various assessments and interventions but nothing coordinated and nothing to help tackle this. Have run out of ideas (and patience and sanity ...)... has anyone else been through this, and where can we access information? Please do not say star charts/rewards, he just doesn't function like that!

Well we have a simular problem with DD1, but do manage to get her there (shes 7). The SALT did a social stories with her about how she feels when going to school, things like butterflys in tummy and loads of words in her head, and included that. We discovered it was a number of worries that made her not want to go, like not knowing teacher for the day (she has 2 teachers), not knowing about what songs they would sing in school and what to do if she lost her pilmsoles. Took a while but was worth it. DD1 finds it easier to type out rather than use words though, maybe try that

My son can be very similar and we are frequently late. What has really helped is identifying one person at school (the class TA) and buiding a relationship with them.

He started off just with ten minutes a day with her, bringing in a toy or book of his choice and just talking to her boring her to bits about it. He loves his Star Wars and will talk to anyone about that at length. This has led on just to talking about other things. About worries. About what he's done at the weekend etc etc.

He has seemed much happier knowing that this one person will always answer his questions and never judge or tell him off for wasting time and will always help.

Have you done the Early Bird Plus course (run by the NAS with the LA)? That can help as you and school get to go on it together.

Thanks. Similar worries here, week teacher was away big problem even though he was prepared for it. Will persevere with Social Stories. SALT assessed in January but cannot come in to school until next term because of work load, pragmatics the main problem for him. Writing also a big issue - processing difficulties don't help. OT suggested computer. School very supportive emotionally which is great but do not have resources for extra time/support needed. Think refusal is his way of saying it is all too much and it is heartbreaking to try and force him into the same situation day after day.

My son is 8 as well and recently diagnosed with AS. We are just getting our heads around the diagnosis. A friend recommended a couple of books which have really helped. My son has just read 'Asperger Syndrome the Universe & Everything' - written by a 10 year old boy with AS called Kenneth Hall. Meanwhile I am reading his Mum, Brenda Boyd's book called Parenting a Child with Asperger Syndrome. Havent finished it yet but it seems to be very useful - full of tips & advice

He became very attached to SENCO and sometimes it works if I phone and she speaks to him, but as she is the head as well (small school!) is really too busy for that to be practical. Have started trying to make same link with class TA and he is able to start the day quietly with her (if he gets there)and spend some time with her at various points through the day, but as she is used for lots of other things too it is never consistent.
Will find out about Early Bird Plus - but think we need diagnosis first??
Everything seems to take ages - we have had concerns since he was 3½ ... but that appears to be a familiar story!

Ampers.... we are without dx (still on waiting list) and have been able to access the course. It's worth a try.

Debs, i phoned about Early Birds today, they dont have a scheme in my area They have emailed me info and i now have to try and get the service in my area.

Sounds really good, such a shame.

Thanks all. Will phone NAS today. Hiding in the 'office' (I work from home - when I can!), screaming meltdown again this morning 'I am ILL, you don't care...' etc. Feel like just phoning everyone and saying I am not doing it any more (but I know I will keep going really - Cornsilk, like you said appearing to cope does not get us far, have already learnt to dread 'You are a great mother you seem to have a real understanding of what is going on' - the euphemism for 'Phew, we don't have to do much about that then'). Oh I am being too negative, I know there are lots of good helpful people out there, just need to find them

Ampers ABSOLUTELY right! I ws just thinking the same as I was putting 'worries' (i.e. post-it notes with written worries on) in a little bag with DS this morning. It's like he gets 'stage fright' as he's about to go out of the door. We're nearly always late as I sort him out and calm him down.

Then school say 'we only see the best of DS'.....er, yes, I wonder why? The amount of times I've left school sobbing down the road home with my toddler in tow having soaked up all the stress so everyone can have the 'best of DS' .

I haven't found the course has taught me much about ASD (I've had to teach it to myself already after a year on the dx waiting list) but it has been a really good way of establishing better communication with school with some useful strategies. In fact, we have a meeting with EBP and SENCO this morning to discuss how strategies are working. This would never have happened without the course.

Your GP/HV or community paed should know how to access the course. Or the LA SEN team as they run it.

Good luck!

Amphers, my ds is extremely anxious and has lots of phobias too. He refuses to get dressed, hides under a blanket, i feel sick etc, etc on school mornings.

School and the world in general must be a scary place, when you dont experience the world in the same way as others.

Ds hates getting dressed because a) it means going to school b) its something he finds painful/uncomfortable at the best of times.

Ds is orally defensive, so teeth brushing is painful, he has a limited diet and a food phobia, so breakfast is stressful.

You cant relieve all the anxieties and stress, but a few things i have done to help to relieve some of it.

Visual timetable ie get dressed, eat breakfast, drink, brush teeth, go to school.

Getting dressed sequence chart ie take off pj top, then bottoms, then put on trousers etc, etc. I have to dress him, but at least he knows what is coming.

I roll ds up in quilt and pressure before dressing him and brush him as i dress him.

Timer is set 10 minutes before we need to walk out of the door and ds spends this time drawing.

Blanket is taken to car and ds places it over his head for the drive to school.

What kinds of things does your ds do to try and relax?

For example ds hides under his blanket when he feels overwhelmed/streesed and draws (not at the same time!)

Ds is also having weekly visit to CAMHS to express the 'worries in his head', i wont have any feed back about this for another 2 weeks, so not sure how this is going yet.

They have given me some relaxation techs to try, but i havent tried them yet and im still managing to get ds out of the door to go to school, so im not going to fix what isnt broken and rock the boat.

I could let you have the relaxation techs if any use to you, its pretty text book stuff?

Oh and another thing we do is ds has a calender on the wall and we count down any many school days left and cross them out before the weekend and not having to go to school.

When i get 'i dont want to go to school', i can say only 2 more days or whatever and then you dont have to. He finds this reassuring.

I also put on the calender the nice things he likes to do ie take the dog for a walk, visit nan etc, etc so his week doesnt feel like total doom and gloom.

Some really helpful suggestions, I feel renewed strength, so glad I posted on here. DS did not get to school all day, I relented from trying to make things boring this afternoon and we went to the allotment and planted onions! (Riven, I can really see how home ed becomes a viable option)
Debs, I hope your meeting went well?
Claw3, we seem to have cracked getting dressed if things are laid out in order for him, but I have set up a calendar and he ticked off Thursday. Am going to add some pics we can stick on as visual prompts really help. Meltdown tonight so I rolled him up in the quilt and used the balance ball for pressure like the OT does - it worked a treat. Even broached the subject of going to school under/with blanket in car.
We will see what tomorrow brings

Brilliant that you have found something that helps to calm him down. Good luck for tomorrow.

Thanks Ampers ......meeting went really well. We might have stormed the barricades at last (with the help of the Early Bird Plus team)

Well, none of it worked! School rang and we went in just for an hour - they have set up various things to help next week, special jobs to do first thing, he loves that. We are going to start with a half day and build up to whole day by end of week. They are also looking into some sensory activities for during the day too.
And we are putting in our parental request for Statutory Assessment next week - time I stopped pretending we don't need to!
Found a lovely quote from Anne Bronte's Agnes Grey: 'Patience, Firmness and Perseverance were my only weapons; and these I resolved to use to the utmost' - something to aim for anyway Glad meeting went well Debs.

Hello, yes I have been through this my Son who developed school refusal due to him not getting a diagnosis by CAMS had to pay privately for Neuro developmental consultant, OT and Speech and Language and educational psychologist assessments to get diagnosis and barrister to get help with SEN . The NHS, CAMHS, LEA don't want to give diagnosis's which will lead to parents asking for the help they would get if they have a diagnosis and SEN. Years of distress could have been avoided and my Son wouldn't have developed, anxiety, school refusal or chronic fatigue. The best kindest thing you can do is to fight for a place at a specialist ASD school. I visited many SPLD/dyslexia schools and none are suitable for ASD. You need a specialist ASD schools in South of England. In my personal experience and I visited around 10 special schools none were of a good standard except the Cambian Schools which are truly outstanding. My child currently attends one near Andover and I can honestly say the standard of education, care and social emotional development has been astounding. My child is extremely happy, loves going to school and is doing extremely well academically as are their peers. The standard of behaviour,tuition, care and achievement is far, far better than that in local mainstreams rated good and outstanding that their siblings attend.

Contact SOSSEN they provide excellent support to help you through process of getting a specialist school place. I used them and can highly recommend them.