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.

Sounds promising open! Hopefully they'll have experience with ASD and some ideas on the eating and toilet issues. I wonder if they have a disabled loo that he could use so it is at least the same every time? One of the things DD's report noted was that she always uses the same cubicle at pre-school which never struck me as odd because, erm, I always tend to use the same cubicle too (!) but maybe if he could be guaranteed that the same toilet is always free and nice and quiet that might help? Do they have hand dryers? I read somewhere about a school turning them off to accommodate a pupil's sensory needs. The state school we are looking at for DD has hand dryers, but I'm hoping she will be OK with them as she seems to be OK with most except for the really noisy "airblade" ones now.

We are still as unclear as ever on schools. State school has arranged a home visit but not until early July. I'm hoping we can get another meeting and maybe a visit for DD arranged before then. They also want to go and see DD in pre-school which is great in principle, but we haven't told pre-school she might not be staying on yet so it's all awkward. We are probably just going to have to come clean to them - I just hope it doesn't result in an immediate demand to pay next term's fees or vacate the space. Gaarghhh... I can't wait until we've just decided and can start to prepare DD and get excited about big school.

Choice is good, choice is good, choice is good...

We're in the same boat Light. We've accepted a place at the school attached to DS's nursery but are also looking at another local school who seem on paper to have better SEN provision. They visited him at nursery before half term and we're still waiting to hear whether or not they'll take him. We're not 100% sure either. Doesn't help that they're both nice and I'm indecisive.

Glad to hear that school visits are going well dimples and open and waves from another dryer hater!

I’m not sure if they have a separate disabled toilet, I can ask. The toilets are outside the reception classroom and seem to be shared with two other classes as their doors open into the same space. I’m not sure it’s the place per se. He will let me take him to the toilet at nursery and he will go when we are out no problem. Based on that the EP thinks it’s more about having a trusted adult to hand so if he can get 1:1 support at school and build that trusting relationship hopefully that will help. Similarly, once he’s developed a stronger relationship with his 1:1 at nursery maybe it will help. She seems to be doing really well so far. We need to continue to work on his independence alongside that, currently at home one of us goes with him. They had paper towels in the bathroom. He is a bit mixed with hand dryers, sometimes ok, sometimes not.

Light I remember seeing something at work a while back about which toilet cubicle you use and what it says about your personality. I can’t remember what it said but maybe Google it

Tough choices for you both on schools. All you can do is pick the one your gut tells you is the best choice, I think.

My course this morning was all about play, quite interesting. I was talking to one of the specialist teachers there who has worked in a special school and she really recommended TEACCH. I need to investigate this and how it works on a practical, at home, level. I’m getting some information sent about an EarlyBird course starting in September. Unfortunately it looks like the closest one will be a 70 min drive away.

We got this which is useful. Obviously our children are not necessarily going to tick all the boxes yet.

Hmmm, or maybe I don’t. Quote from one website offering TEACCH courses “Special emphasis is placed on helping Autistic people and their families to live together more effectively by reducing or removing Autistic behaviour.”. I thought it was about making the environment more autism friendly? More investigation needed...

I thought I'd heard positive things too open but that doesn't sound good!! But I think any method will have its cranks and misinterpreters and even bad methods can have useful insights you can cherry pick (sometimes!!)

I agree Light no matter which method is used it is heavily reliant on the skills and the understanding of the teacher, how they go about implementing that method with that individual and whether they can tailor a programme and truley understand what motivates that person.

You are both absolutely right, a little knowledge and all that!

Ds awake for the day at 3:15 today. Hoping it’s just a blip...

Oh poor you openup DS also going through a unusual few weeks of waking up in early hours and getting all his toys out then we wake up and have to explain that just because he is awake it's not morning! Sympathies!

Sorry you’re having disturbed nights too Chasing, it sucks. He napped today so won’t be asleep until after 9. Hoping for a better night... 🤞

How was the rest of the weekend for everyone? I had a nice day out for a friend's birthday on Saturday which was great but DD had a really difficult day and nightmare bedtime. I think she was probably also still recovering from being ill earlier in the week, but we had a proper full on melt down at bedtime. It's so horrible when they're so upset and you just don't know how to help/what to do for the best.

Yesterday was much much better. Even had a lunch/playdate with friends whose daughter DD doesn't always play with the best but they actually did some quite nice playing and generally DD had a really good day.

We met with the next bit of her current school this morning about her Dx report and how best to support her next year. Honestly it all sounded really great and it is tempting to go with them. They were reassuring about her being able to get into the next school too, so the biggest worry is just whether the bus journey/being out of the house for so long age 7-11 is going to be a big issue...

I do worry that I just am totally convinced by whoever I spoke to last though. But on the other hand the fact they made the effort to be so reassuring and really discuss with us in detail has to be a good sign I think.

Hi Light glad you had a good weekend and that it ended on a high. Great news that the current school are being supportive and proactive, tough choice for you but it sounds like she’ll be well supported in either school.

We had a good weekend. Ds’s very early wake has not been repeated since, thankfully. We had a friend and her ds visit on Saturday and the boys played beautifully. Ds is really starting to join in more and vocalise what he wants them to do rather than joining in passively or just doing his own thing. He’s also been great at sharing his toys and not making a fuss about what the other child chooses to play with. Definite progress. Yesterday we went for an afternoon walk at a local NT property. It can sometimes be tricky and we often have problems with not listening and running off but with two of us there it’s more easily managed.

He’s continuing to make progress at nursery too and playing with the children there. With six more weeks of term there feels like enough time for consolidation and further improvement, assuming we don’t hit a bad patch. I’m keeping my fingers crossed! Then there’s the 7 week gap to deal with. Hopefully things won’t all go backwards then.

He joined in a few more of the activities at the playgroup this morning. Still lots of wandering around and messing with switches, opening cupboards etc. but it was an improvement on last week. Then he fell asleep on the way home at 11:40

Yes I know what you mean about the long holidays. I've been trying to look into holiday activities so she doesn't have a shock being back in a group of children in September. Must get on with it though as a friend told me lots of stuff is already booked up...

You said your dd does a ballet class, I think? Is she good at following the instructions and joining in?

We are having a little holiday and I'm exhausted! Having a great time too. We went to Drayton Manor today and he loves it there. One off moment for me was when a stranger sitting opposite us on a train ride asked me if he was autistic - she said it was the finger chewing that tipped her off (and said that her son is autistic). I can't even persuade my son's paediatrician who has known him since 9 months that he is! The conversation did rather knock me

dimples I bet, I hope it didn’t ruin your day

I often wonder how obvious it is that ds is autistic to the casual observer. To me it’s often glaringly so but I’ve read a fair amount about it and have thought about it a lot. I guess your average person hasn’t really.

Thanks open it didn't spoil the day but it has left me feeling a bit down - and now I feel annoyed with myself. Mostly other people just think that he is about half his age - we had this, this morning at the hotel when someone asked my boy his age. He answered correctly '4' but this stranger was having none of it - I ended up speaking rather firmly to them.

Need to focus on the positives though - after a horrific 5am start accompanied with screaming when I told him that the rides had yet to open he was v well behaved all day and I haven't heard him giggle so much in ages.

She actually is OK open. She loves the outfit and the music and she really concentrates hard, though she can be a bit behind if they do something new. What she doesn't do is talk to the other children, even the two girls from her class at school who go: she's just focused on the class.

She seems to really like it though and I have to remember not everything is an opportunity to shoehorn in some socialisation. She's allowed to just enjoy stuff by herself!

Are you thinking of dance classes too?

dimples try not to be annoyed with yourself. This is a massive learning curve for us and new things are bound to throw us a bit. It isn’t easy sometimes and you’re allowed to feel down occasionally. I find that I often need a day or two to process things and then I’m fine again.

Light it’s great that she enjoys it and is able to follow along. I asked out of interest really. We’ve tried various things for ds and although he often likes going he tends to mostly do his own thing and not follow instructions without support. I’m sure as he gets older that will change. His nursery does a dance class on Thursday mornings as one of the teachers is also a dance teacher. Sometimes he joins in, sometimes he doesn’t. I think we’ll hold off trying anything formal again until next year. I do feel a pang though when I hear of other people’s children enjoying x, y and z.

Hi everyone, sorry I've been a bit quiet. I had a meeting with our local disabilities charity on Friday to go through my EHCP draft. It was really good and he and I both felt the draft only needed some minor changes. So finger's crossed it will go smoothly!

He threw a bit of a curve ball at me and asked why I wasn't just sending ds to a special school. It something I was thinking we would probably have to do later (maybe after year 1 if he wasn't coping) but really wasn't something I was thinking of right now. He recommended a couple of schools to look at, which I will but the idea of sending him straight there has thrown me a bit. It's funny how you get so set on one thing.

In the meantime our behaviour therapist left the practice they were at, so we're having to wait while they reestablish themselves. I've just booked in a load of freelance work, so have had to change all the nursery bookings and we're now thinking of moving out dd to the school nursery or ds may (or not) be going to in September arghhhh!

Everything always seems to happen all at once, doesn't it! And also cue High Anxiety week for ds!

"Everything always seems to happen all at once,"

A THOUSAND TIMES YES!!!!
Last year we had a new baby with all the loveliness but also relentless laundry and sleepless nights, the first mention of autism, serious depression and then suicide in our close family and all the fall out of that, being told by DD's school that they might not take her on to primary, a cancer scare and couple of minor ops for me, and various (minor in the scheme of things) work and house stresses. It really felt relentless and I felt so sorry for DS that his babyhood was full of all these distractions instead of lots of lovely gazing time that we had when DD was a baby.

This year (touching wood desperately) the only big things have been a new job for OH and choosing a school. Which, although I'm managing to get super-stressed about it, is all good really. I will never know quite how we made it through last year but we did and, for now at least, we're back on an even keel. Sometimes it just feels that the rush of "events" will never end though. Hang on in there, you'll work things out!

I'm sorry about the pangs open. I get those too for different things (usually when I see little girls being all "best friends" and holding hands etc.). I know we have to help them be joyfully their real selves and not try to push them into some NT "cookie cut out" mould but it's hard when it sometimes feels society is shouting the norm at you.

It's weird because I never felt very conventional, so I've been shocked at how much some of those things get me. I would have thought I'd adjust much more easily to the idea of DD doing things differently (particularly given that I did them pretty differently as a child too). In my rational mind I have totally adjusted but in my gut I suppose I just wanted everything to be easy and lovely for her. But that's not real life for anybody really, not just our kids.

Thanks light. Sounds like you've had a hell of a year! It's funny that day to day I manage to convince myself everything's ok and under control but to be honest it doesn't take much to throw everything out of whack. Being an adult is hard work!

That's exactly it Liv. We're doing OK but with about 1pc spare capacity (e.g. we might sit down and watch TV for half an hour in the evening, even though it only takes 20 minutes to eat dinner) so it really doesn't take much to happen to start eating into sleep/sanity. But for the moment we're the right side of the line! Last year ... not so much!!

Liv, glad to hear that the EHCP is looking good. Having special school suggested must have been a bit of a shock - I think my ideal would have been mainstream with unit attached but there is no suitable provision nearby.

Some of the other parents have arranged to take their kids to a local activity farm after their first school visit on Friday. I feel like I am living in a completely different world being a single working parent of a child with SN - there's no way he could cope with it following the visit, money is tight and I'll need to get back to my work. In short I am jealous!