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.

Thanks open sounds like a plan. Been to tesco bought banner, balloons etc. Ive picked up a couple little bits for breakfast and some weird yogurt drink in a spiderman carton which I'm sure will be popular.

On the potty training front did everybody start minus trousers and underpants? And does it matter if say I did some training at home then send him to school in nappies or should I just go for it?!

Thanks for your earlier messageopen I managed to miss it earlier on

Hi Mama sounds like a nice birthday surprise!
Yes minus trouser and underwear. We tried to send ds into nursery without nappies as he was going so well at home but he found it massively stressful and had loads of accidents.
We had a meeting with the nursery staff and we put how we were going to potty train into his IEP. I think he wore nappies at nursery for about a month before he didn't need them anymore. In that time they encouraged him to use the toilet frequently and used the same images and reward system as we did at home. Like open says, everything takes longer that it would with a NT child.

I should've said, I wish I'd discussed it more with the nursery first. I potty trained ds on a whim so it was all a bit of a shock to everyone! I should've been more organised about it!

Poos took us a while to sort out. It took about six weeks before he first told us he needed to do a poo on the potty (during his SALT assessment ). Before that we had lots of poos in pants (vom not envy) even though he was doing really well for wees. We did it over the last couple of weeks of the summer holidays so didn’t have to worry about nursery initially. Not remotely helpful I know.

Hard to know when best time to go for it is. DS1 will be home all day through summer so harder just to hang out at home but days are bitty during term time. Had two hours nappy free yesterday but no wee or poo during the two hours.
Term time involves DS out of house for 3.5 hrs for school, home for 2.5 hrs, in car for DS1 pick up (about half an hour) and then home again. I just can't imagine jumping to full time nappy free. Don't want any poos in car seat!

That does sound quite difficult. We started it when we had 3 full days at home and didn't have to go anywhere. If it helps you can buy disposable changing mats and we used those for car journeys initially so that the car seat didn't get wet.

There’s a bank holiday coming up and another in a few weeks. I’d pick one and prioritise it if you can. Can you get someone else to take DS1 out?
If he can hold it for two hours it’s a good sign that he has some control.

It looks like we’ve got an agreement to assess. Nursery got their letter, ours must be in the post.

First hurdle crossed, which is excellent news. Of course the want more (the same...) information. Obviously the copious amounts we’be already sent isn’t enough

That's great news Open. Another hurdle out of the way!

Mama, I agree a long weekend might be best to kick things off. As others have said have a good chat with nursery beforehand so that you can use a consistent approach. I didn't do that properly! The other option people use is 'toilet timing' rather than toilet training. So when he is at home with no pants keep a diary so that you get a feel for his natural timings and then take him to the toilet at those times (rather than only relying on him to let you know). My boy mostly tells me when he needs to go but I also tell him to try if he hasn't been at one of his regular times (e.g. straight after breakfast). At his nursery they have set times of going which works quite well for him.

Glad to hear they've agreed to assess open.

dimples hope your EHCP draft is better than ours and do take as much advice from IPSEA and others as you can.

We had our ADOS yesterday. The formal diagnosis was tough to hear but DS did really well. I was worried that he would run away or try to escape like he did at the initial paed assessment but I'm pleased that he showed his strengths as well as his challenges. We left with a clutch of leaflets and an appointment for a DLA application with a welfare advisor. Has anyone done the application? I started awhile back and found it emotionally tough to complete. We already pay for private SALT and are hoping to start 1:1 swimming lessons so the money would make a real difference.

Good luck to all the potty trainers. We may use the long weekend to try and crack pooing in the toilet but DS is so stubborn that I'm not sure we'll crack it...

Hi Sue glad the assessment was ok.

We got DLA recently and it is really helpful. Use the cerebra guide to fill it out www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/ it's really good and makes filling the form out a lot easier!

Thanks Liv that guide looks really helpful. I thought I'd be more emotional after diagnosis but I just feel relieved that it's over. Maybe it'll all kick in soon.

Sue I’m glad he did well. Big relief to get it over with

The paed wanted to see DS again in June. I imagine he’ll be exactly the same but you never know. I have a letter to, finally, call about OT (we have started private OT). Of course they want to do an assessment at the clinic so that won’t go well at all! It can’t be only my child that refuses/is too anxious in these clinical environments, surely?

He’s made a lot of progress since Easter, similar to other posters whose DC turned 4. DS is nearly 4.4. Still behind his peers but doing well for him

Hi all. Glad your assessment went well Sue. We have ADOS on Thursday but they aren't doing Nursery visit until the week after, and seeing us to give us results the week after that, so we'll be in limbo for a little while. Still feeling very anxious about Thursday. Hope we don't pass that on to DD! Will be glad to get it done with.

How did you find your OT open? It's the one thing I have been thinking we should maybe be pursuing with DD before she starts school in September, though she is doing much better with physical stuff these days, but I still feel there are probably skills she could usefully build on before school, and at least an assessment to see how far behind she is and in what areas would be useful. Don't think we have any chance of getting NHS OT though (we didn't even earlier when she was much more obviously behind), so we will probably have to go private. I have had enough of cranks I really want to find somebody good and helpful.

"Doing well for him" is brilliant isn't it? It's a mindset though and I know OH is struggling with it. There have been a few birthday parties recently and he finds it hard to watch DD not joining in (whereas I am much more "glass half full" and tend to feel happy about the half of the time that she does join in, rather than worried about the half of the time that she doesn't). He has been thinking of getting some counselling to talk through how he feels about all that stuff to try not to pass on too much pressure/too many issues to DD... has anybody done that and found it useful?

My feeling is that having 2 parents with slightly different approaches is probably not a bad thing - I am probably too laid back and don't push her enough to try things outside her comfort zone, and his tendency is to push a bit too much, so hopefully between us we come out about right. But maybe that is me being glass half full again!

LightTripper it was very unscientific. I posted on here asking about SALT & OT and got one reply. I emailed NAS and they don’t recommend therapists so I just Googled and emailed the first ones that looked decent. I booked initial appointments with them and they both seemed nice, competent and to know what they were talking about. DS has seen SALT four times, I think, and OT only twice. Tomorrow he starts fortnightly SALT at home and next week, fortnightly OT at nursery.

We didn’t book an assessment as I knew there was no way he’d comply. I was very upfront with them that over the first several sessions he would need to get used to them before they would probably be able to do much with him. The first sessions with both he refused to go in the same room with them and repeatedly said he wanted them to leave. Luckily they didn’t take it personally! They will get to see what he needs as they get to know him better. SALT gives us things to work on at home and nursery each time.

The NHS OT, if it’s offered, won’t be much. They don’t offer anything for sensory related issues which he needs. Private OT will work on everything, tailored to him, which is what we need.

Glad your assessment went well Sue. I’ve been exchanging emails with SEND caseworker today and I’m awaiting the revised draft via snail mail but don’t have high hopes....

My son was discharged from SALT last year but we got re-referred today as part of the EHC process (albeit too late to go into the plan). The appointment was a nightmare with my boy throwing any toy in sight.

dimples76 that sounds really tough. Will subsequent sessions be there or at home/nursery? Hopefully he’ll settle and get used to it with time.

Our SALT is coming this afternoon and DS has already said he doesn’t want her to... he usually ends up being interested in what games she’s got in her bag though and interacts a bit over that. Luckily she’s not fussed over his politeness if he’s using language. I’m hoping it will just become part of his routine with time and he’ll look forward to it.

DD has said she doesn't want to go and play with the lady at the children's centre tomorrow (which is the ADOS), she wants to play with me instead (!) Although then she was telling her teacher this morning that tomorrow OH and I were going to pick her up and take her there to play, so hopefully the "prize" of being picked up by us instead of her nanny is a big enough plus to make up for having to do silly/boring exercises for yet another stranger... I have also promised her a Babyccino and cake after, which is usually a pretty good incentive!

I am a bit worried as she just went to full days at pre-school and is KNACKERED by the end of the week, so I'm just hoping she can hold it together enough that we think she's given them a good representation of how she plays/what she can do.

I definitely think these things get much easier if they become routine and they get comfortable with the individual people, rather than having to deal with new faces and places all the time.

Now I'm going to sneakily spend an hour of work time trying to get all my papers together for tomorrow (which I'm justifying on the basis I've had to spend every evening this week working instead of getting my papers together!!)

Diana

LightTripper I hope it goes well and is not stressful for any of you. At least DD is prepared and partly understands what’s going to happen.

Wrt your DP, I would think that therapy can’t hurt. Hopefully it would help him process his feelings in a constructive way. I downloaded a book (one of many!) called something like Why kids push your buttons. I’ve not yet read it but it’s about how your own childhood can affect the way you react to your children. There may be an aspect of this there? We usually hope that our children will have a better, more fulfilled and enriched life than we had and I think when you have a child that’s a bit (or a lot) different to the norm and that seems, or feels, like it might not be the case there’s a bit of sadness or disappointment there. Not necessarily for you, but for them. There are so many things that I’d love DS to experience but he’s just not ready for them yet. Maybe he will be in the future. In the meantime, he’s happy and healthy and that will do.

Anyway, I’m just musing and am probably completely off base. I hope I haven’t offended anyone, it’s certainly not my intention.

I was very nervous that DS wouldn't cooperate as he often doesn't engage with structured activities and be very difficult with our SALT who like open's therapist has developed a thick skin! DS has no filter and regularly tells the school principal how much he doesn't like him which makes for an awkward start to the day.

I know other people whose children couldn't complete the ADOS tasks. Our assessors said that they were very aware of how artificial the test is and how much depends on the child's responses on that day in that context.

Best of luck light. We used cafe bribery with DS so I hope the babyccino works it's magic for your DD.

Open - the worst of it was after 90 mins of hell SALT said that he wouldn't be getting and therapy as his functional language is v good. The SALT is however, going to visit him at nursery where is speech can sometimes almost vanish (especially with other children). I think when he sees the difference that could change but he said normally for social communication problems it's just advice for nursery/school/home.

Good luck tomorrow Lighttripper

Hope it all goes well tomorrow Lighttripper.

Our behaviour therapist usually recommends three counselling sessions when parents first come to her. I haven't taken it up yet because I feel that actually my ds is one of the less stressful things going on atm (high anxiety weeks not included!). She seems to think it was very beneficial for most of her parents.

dimples76 what a pita. it was similar for us. Our lovely NHS SALT has seen DS three times officially, once in clinic and twice at nursery, she’s also seen him a couple of other times when attending TAF meetings at the nursery. Because his language is considered pretty good (comparatively I suppose) he doesn’t get any speech therapy. She has provided strategies for home and nursery and written a very comprehensive report for the EHC application.

Do they offer any communication groups or parental courses in your area? DS is currently attending a playgroup for children with social communication difficulties run by the SEND team and will, hopefully, be starting a more structured one for eight weeks across June & July. I also start a parenting course on Friday morning for seven weeks which covers a variety of stuff - sensory issues, communication, behavioural etc. I’m in Cambridgeshire.

DS is refusing to come and eat dinner again. It’s a real issue at the moment. I’ll end up having to give him toast and breakfast cereal later