DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Will come back properly, but wanted to wish you luck for your meeting today hurricane, hope it goes well (and I feel your pain chasing and wishing you all better)

Thank you Seeking.

I think the Joint Assessment Meeting with the LA (for an EHCP) went ok yesterday thankfully. They seemed to understand DS and we got all our requests in for the kind of provision we think he needs. So will have to wait and see if it’s agreed. But if it is agreed we could have an EHCP really soon - which means I can get my request in for him to go to a DSP school which is mainstream but has an autism unit. It’s a 25 minute drive away but I think it might be worth it if we can get a place there. God knows how we would cope with two separate school runs (for DS then for DD 1 and 2) but we would find a way!

I'm really glad your meeting went well hurricane! Can you not write transport in to the EHCP so that you don't have to do the school run? I know it exists but I have no idea how it works in reality.

We've just found out that the manager of our nursery is leaving (may be a good thing as she is the one being slow). Going to have a meeting on Friday to discuss this and applying for he EHCP. I have already printed off an application form so that I can apply for it myself if they drag their feet anymore!

For Christmas we are giving our ds puzzles. He can't get enough of them at the moment. Also spongebob related stuff (his other current obsession!).

Hi Liv, I think they would provide transport if they agree it’s the best school for him. Just feel he’s maybe a bit little for going off in a taxi every day to school even with a chaperone .

On your EHCP, we were told it would strengthen our case to put the request for an EHC Assessment in ourselves (rather than preschool) but this may just be our LA. Hope you can get something sorted soon anyway. We had official notification yesterday that DS will get an EHCP. Feeling. Very relieved.

On a completely separate issue, how did you find your private OT? I am really interested in looking into this for DS too.

That's fantastic news! So glad you'll get the EHCP.

I know what you mean about the transport. They are really young still.

We did a multi disciplinary assessment for our ds when he was 2.5 and the OT was part of that assessment. They were very good so we've stuck with them. Do you have any parent support groups in your area? It might be worth asking around for recommendations.

Hi all, glad things are moving on with the EHCP hurricane. You must be so relieved! We're going to an info session this week where I'm hoping to find out more about the needs assessment process and how/what we should contribute. No one's saying whether we're likely to get a plan or if we should be adding in more evidence at this stage.

Hello all,

So sorry for the radio silence! We have had our assessments this week and last for DS's EHCP. We also had to hastily try and find a private Ed Psych as we're fairly sure after meeting with the LA one that she's going to say that DS can do all sorts of wonderful things that he really, really can't. E.g:

Ed: "Can he feed himself with cutlery?"
Us: "No, not even with a sooon. He uses his hands to eat"
Ed: "But can he hold a spoon in his hand?"
Us: "Yes"
Ed: "Wonderful
Cue long conversation where we explain (crossly) what not feeding himself means

Great to hear the EHCP process is going well hurricane. Hope you get everything you want for DS. Also hope the info session was good sue.

Thanks for the present tips liv, puzzles (and Hey Dugee after someone recommendation) are new obsessions here too.

Has anyone made any progress on the not taking all your clothes off when you go to the loo front? No idea how to crack this one!

Hi seeking it great they are doing the assessments. Not so great about the EP! I hope you manage to get it sorted.

Like everyone else we've all been a bit under the weather and trying to deal with a couple of really high anxiety weeks with my ds. I think the run up to Christmas is really stressing him out. The nursery are now on the case with EHCP application and are putting together all the documentation now.

Still haven't worked out the whole getting undressed/loo thing. Our new progression is the instead of standing on the floor to go to the loo he stands on the loo seat!!! Not sure how we're going to train him out of that one.

Hi liv,

Thank you - fingers crossed EP/EHCP wise.

Sorry to hear your poor DS has had a hard few weeks. The run-in to Christmas really can be a horrible time for our kiddies. Hope he has a chilled lead in. On the plus side it's so good that the nursery are getting everything together for the EHCP.

Ha, the loo thing is clearly not going to be easy for us all! Standing on the loo is a stage on from us though in a way, as my DS has always sat down on his little loo seat with handles. Seemed a good idea at the time as he took to it straight away (and it meant we skipped the potty stage which he refused to use). As with most things, I'm now wondering how we get to the next stage, and have him stand up!

HI, sorry but I have been so quiet too. It’s been so crazily busy recently and DS’s behaviour has been quite challenging. He has started climbing on the kitchen worktop a lot, wanting to climb onto the hob even when switched on. Also insisting on turning the kitchen lights off when I am making dinner and becoming inconsolable when I turn them on again! And his diet has taken a major nose dive! And speaking has really slowed . I thought I’d insulated him from most Xmas stuff but maybe he’s still feeling the chaos! Hope you are all fairing better xx

Hi hurricane, challenging behaviour here too, although I'm not sure it's due to Christmas. We seem to have cycles where behaviour is really trying and there's no real rhyme or reason to it. I keep telling myself it will (hopefully) pass soon. I'm sure either way (whether Christmas related or not) it'll be the same for your DS. Horrible while it's happening though! Also, we always seem to have a dip in speech before my DS pushes on, and often a jump in language comes after a period where we're worrying about his talking. Hoping it's the same for you.

We have unbearably loud shouting here. My DS is generally pretty chipper, so it's over-exuberant shouting (and then laughing like a drain) at a level that is so loud we have to shout over him to get him to stop . Very trying! Hoping both of ours come out of this phase soon! and for us both!

Sorry have also been quite here. Illness, birthdays and general chaos! Still struggling on with EHCP saga. It has been issued but we do not feel it is up to scratch atm, I thought getting one agreed would be the hard bit but the fight seems never-ending. Also struggling with talking here. Although we feel DS has come on a bit, the progress seems limited to us as home. Nursery say they haven't noticed change and still just echolalia. He is getting better at taking turns in a very simple game but would never interact on any level with a peer without an adult instruction.
Really hoping Christmas chaos doesn't set him back further as progress just seems soooo slow atm. Hope your DS settle soon Hurricane and Seeking its such a strange time of year with short days and all this crazy Christmas stuff going on for them.

Sounds like everyone's having a challenging time at the moment. Hurricane we're having climbing problems too, also I have no idea when my ds got so tall. I think everything important needs to move up another shelf in our house. Yes seeking the decibel level in our house it way too high. I was considering wearing ear plugs the other day!
We've been having box/cardboard box shredding. Head butting/kicking/hitting and headbanging. Tantrums and refusing to turn the light out/go to sleep. Hoping this phase passes quickly!
Chasing that's so frustrating about the EHCP, I hope the LA see some sense. Do you have someone helping you?

Sorry that should have said book shredding!

Thanks Seeking. That has made me feel better . Think I was just having one of those days which i guess hit us all every now and again. On the assessment side of things, and you’re problems with your EP, I have been told a couple of times recently that they need to be doing things independently and consistently to be judged to be doing them in an assessment, ie not something they can do with adult support/ prompting/ or anything they may have done once or twice even. If there is anything in there you don’t agree he can do then you should have opportunity to challenge it I hope. We’ve had a couple of instances of similar.

Hi all,

Just wanted to mainly say Merry Christmas to all 🎄 hope that kiddies all have a wonderful stress free time. I'll no doubt be awol during the next week so and thought I'd say hi now while wrapping presents. Even though DS only wants decorations for Christmas...

chasing hope you're feeling a little better now. Sorry about the EHCP. I suspect we will shortly be in a very similar position! Agree it's totally exhausting fighting the whole time.

Hope that the challenging times pass quickly for all (or have passed We now have stomping to accompany the unbearably loud shouting. Our neighbours must love us (liv ear plugs sounds like a plan! It's never boring is it? )

hurricane I often have those days where progress just seems too slow and I worry about the billion things I still have to teach my DS. Speech is always a worry isn't it? (chasing, your message resonated as DS is now talking a lot at home but at nursery it seems like mainly echolalia and he otherwise talks very little there).

Thanks for the EP tips hurricane they were really useful as I had to comment on the report so it helped me push back on things DS is not doing

Take care all.

Merry Christmas x

Btw that last message was me! Oops. Sorry for any confusion

Yes merry Christmas. Hope you are all having a good and relaxed break!

Hi my DS doesn’t start school until sept 2019 but thought I’d jump on anyway and hear the tips for how your children are progressing :)

HI everyone, happy new year. Hope you and the little ones are all well. I wanted to ask you guys about sleep problems. I have various problems getting DS to sleep at night and wonder how you guys cope. I have to use a stair gate to keep him in his room, and he will often fall asleep on the floor after grizzling for what feels like forever about being shut in there. I have recently resorted to reading him stories on my knee in a rocking chair and then he falls asleep on my knee and I transfer him to bed. But am worried I am storing up problems for the future. Anyone else struggle at bed time?

Happy New Year everyone.

Hi Hatetheunknown you're already more organised than me!

Hurricane yes my ds can often take 1-3 hours to go to sleep at night depending on how his day has been. He also has a real fixation with turning the light on the whole time which makes him stay awake even longer. He has a babygate on his door too and we've had to start unscrewing the lightbulb after he's had stories. Tbh we kind of just let him do his own thing and check on him now and again. He often takes a toy or his coins with him and he plays with them till he falls asleep. Something that has really calmed him recently is my dd's 'tranquil turtle toy'. It projects lights onto the ceiling so it feels a bit like being underwater. It really seems to chill him out. Having said that it may just be a phase!

Hello all! Happy New Year. We had an exhausting but fun Christmas/New Year. Quite happy to be in January now though. We had so much "stuff" hanging over us in November/December (too much of it bad/hard) - some of that has gone now and life feels a bit more manageable.

Getting very close to school application deadline now and we still have a few to see next week. How is everyone else doing ... have you decided your preference order already, or are other people still working through their options too?

Speaking of light projectors, I got this bath toy for DS (10 months) for Christmas and both he and DD seem to really like it. Quite fun! Not sure how long it will stay water tight for and definitely needs supervision but not super-expensive and so far it's survived dunking/chewing etc. We got ours from Lilbits but they don't seem to sell it any more, but this is the same one: www.amazon.co.uk/Paladone-Bath-Floating-Mood-Light/dp/B01088ICF8?tag=mumsnetforum-21

Hi there, thanks for the tips Lighttripper and LivPotter. Funnily enough we have one of those turtles too! Haven’t used it for a while but will definitely get it out for another try. I also really like the look of the bath gem.

It’s so hard deciding on schools, isn’t it. I think we have finally got there. Have put down as first choice a mainstream school which has an autism unit, even though it’s 25 mins drive away and my two DDs go to a different school over the road from home. Second choice is a completely different mainstream school on the otherwise is town from us (10 mins in car) which has a lot of experience of autism and seem quite up for taking DS on. What about everyone else?

I've put down our closest mainstream school as 1st choice. They seemed really enthusiastic about their SEN support and experienced. The other choices are also mainstreams close by. I haven't put the school with a SEN unit as it's the other side of the borough and it would be massively impractical to get him there and back.

I'm feeling really nervous about it and worried I am making the wrong choice. I know in theory with the right support he should be ok in mainstream but he just seems so far behind.

I think We're going to see how reception goes and if it's really not working we should be able to move him to a really good Autism school up the road. I think in any case the LA would want proof that they need to spend that much money on him before we could send him there (think it's around £50000 a year!!)

I had a call from the Council today to say that they will not be opposing my appeal against their refusal to assess my boy for an ECHP. Phew - one victory for me! I really hope that we can get this sorted before September ...

My sister works as a TA in my first choice school and I feel that I know too much about its issues!