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.

Open that sounds miserable, I hope you are ok and you've managed to at least have a nap 

Dimples I think we all have to be 'that parent' it's unbelievably annoying when people don't read the things you give them!

Lovely to have you back seeking! Sorry it has been such a difficult time for you.

Light it's so great your dd is doing so well. I find in our house I don't push ds enough but my husband does and it always surprises me what he can achieve. You and your nanny know her better than the school so you know her limits better.

I took the first couple of hours and then dh got up and I went back to sleep for a while. Ds did not go back to sleep but has now fallen asleep on the drive to school (it’s a 4 min drive to the next village). So I think I’m going to have to let him sleep for a while and then try and take him in. I’ve already called the school. It’s not the best morning for a car nap, it’s bloody chilly!

Welcome back seeking, you have a lot going on

Hi liv, ahh thank you lovely! It’s really nice to be back . I totally agree that we all know best how and when to push our kids.

open thanks for you lovely message. I’m so sorry about your night

We had a period last year where DS did the same and was wide awake for the day and full of beans at 3am (and we’re in a flat so definitely couldn’t push it without waking the whole house). I know how miserable it can be. After a couple of months (I know, I know, I’m sorry) it did stop as quickly as it started, but we were broken during it with tiredness. I was filled with dread and thought the same (this is it, he’s always going to do this) but it did change so hopefully it will for your DS too.

I hope you get the melatonin soon and that DS gets some rest this morning before school (and you do after that ).

Oops

Open I have my fingers and toes crossed that the melatonin works

He slept for 50 mins, woke up for a few minutes but could barely keep his eyes open and now asleep again. I’m parked outside the school. It’s really quite ridiculous

Thanks for the good wishes all. seeking we had the same Dec to March, then it settled down for a few months before things started to get worse again around July, though not as consistently at first. This week has been the worst we’ve ever had. Possibly tied in to end of this half term, he needs a break etc. but who knows, he can’t tell us and he’s got years of school ahead of him. Otherwise his behaviour is not out of the ordinary.

Light It’s fantastic that your dd is doing so well, what a relief. I’m sure the other things will come as she becomes more familiar with them and her confidence improves.

We really enjoyed looking through ds’s learning journey book at parents evening last night. They said he’s doing really well; making progress all the time and joining in more and more of the structured classroom activities. He’s asking questions and is friendly with two children in the class (as well as the year 6 boys who he adores and who seem to be really good with him).

It's lovely to hear of your daughter's successes Light and everyone else's too.

Seeking my son is the class clown too. Can't get over how popular he is - it was nothing like this at nursery. His behaviour has taken a nose dive recently. He ran away from me at pick up yesterday and we gathered quite an audience when I chased him around the playing field.

I think all our children seem to have surpassed our expectations - perhaps because our expectations were so low and I for one was terrified!

SENCO called me today - she is new to the role and apologised for OT issues but hopefully we can move forward positively.

On my way home from work and praying that my boy did not run away from Granny at pick up!

Can't believe we made it to half term!

dimples I think we all deserve a pat on the back (and a stiff drink) as well as our dc for getting to half term.

Despite our rubbish night our day ended brilliantly. Ds sat through the whole family assembly, his first assembly ever, and even got up with the class when they sang their song, though he didn’t join in the actions or sing. This is massive progress and even the TA had a tear in her eye. Otherwise he didn’t have a great day as he was so tired.

We will be trying the melatonin tonight. I am scared and excited in equal measure.

I think we definitely deserve a pat on the back.

Hope the pickup went ok for your ds today dimples.

I've been rather bravely foolishly picking up my ds without a pram and with my dd. It's actually been going ok until my dd encouraged ds to run off and be 'chased' right near the main road! Had to have a stern word with them both this afternoon

Glad today went ok despite the lack of sleep Open.

How are the school holidays going for you all? I hope dc are enjoying their time off rather than stressed about the change in routine.

Going well here. Ds has had a few play dates (not children in his class) and he has been interacting with them well, verbally initiating play etc. so he’s come on again which is great. A girl, slightly older than him, started playing with him in the park and he responded and they had a lovely 15 mins or so before she had to leave. I did have to prompt him to ask her name rather than call her ‘this girl’ but he’ll get there.

We had a new SLT come to the house Tuesday morning. Ds was very negative when I told him that she was coming but when she arrived he was intrigued by what she had in her bag and played for the whole hour she was here. He never did that with the one we were using before. I’m still waiting for her written feedback and to see what availability she has.

With regards to the melatonin. I gave it to him that first night. He chewed it and was not impressed! He slept until 4:18 which was not great but better than he’d managed so far that week. The next evening he complained of ear ache and I gave him ibuprofen, I didn’t want to give him the melatonin too so left it and he slept until 4:30. Since then he’s woken at 4:20/4:30 and then 5:20 today. I’m hoping he’s just naturally coming out of this last phase. He’s definitely got new skills, talking better, and the other morning he undid all the buttons on his pj top and did them up again for the first time ever which was brilliant.

I’m looking forward to the lead up to Christmas via school this year. Hopefully it will not be too much for ds.

Great that things are going well open. 5.20 must feel like a lie in! Hope the sleep continues.

Half term has been pretty hellish so far. Ds has been on some kind of sensory seeking bender. He did calm down a little bit yesterday after spending most of the day in the bath! We have OT today so hopefully that will sort him out a bit.

That sounds tiring liv, hopefully she has a lot of ideas for you. I watched the second episode of There she goes last night so I’m imagining lots of bubbles. Ds has refused a bath for the last few months and has a shower now. It certainly makes the bedtime routine quicker though I miss his baths a bit.

Yes, 5:30 is a lie in these days, everything’s relative isn’t it! We used to moan about them, they are now an aspiration

Yes we went from one bath a month for the last 6 months to wanting two everyday for the past week. We have run out of bubbles 

That was supposed to have a smiley face at the end but it's disappeared! 😃

We've mostly had a good week but he has got upset the last two nights. I am at work tomorrow and he was crying about going to my Mum's. Feeling guilty but can't get out of work tomorrow so we need to make it work. He is currently sleeping diagonally across my bed - not sure where I'm meant to fit.

Hope that sleep continues to improve Open.

We are on two baths a day here Liv

Oh God Liv, hope it calms down soon! We're just back from a break abroad. Had a really good time. Was so amazing to have a break without any poo holding issues... Our first one I think, woo!!! DD is being really lovely with DS at the moment too. I think because he's a bit older now so she can really act as a big sister and show him stuff (how to be cheeky....) now. It's cute!

Only downside was meltdowns through airport security in both directions. On the way there it was triggered by having to put her bag through the scanner. On the way back that was fine (we'd talked about it and watched some YouTube about how the scanners work so she knew what was happening) but then they were really prescriptive about how we had to go through the security arch with DS and DD ended up on the far side on her own and understandably lost it. It's so hard to help them prepare when it's different every time and so many of the staff are really prescriptive and just bark orders at you. I mean, I get that it's an important job but sheesh...

Need to do some research on how to make this better. There was a girl behind us on the plane out with an autism lanyard on and I wondered about looking into something like that just in case it gets a bit more understanding and flexibility from security staff.

Anyway, we are home now and full of cold, but has been lovely to have a few days in the sun and now we have three more days of fun (TBD!) at home before back to school and the new term.

P. S. open good news about the (slightly) more reasonable starts. Everything crossed he's got another hour or two in him in due course!

Light you should definitely go for the lanyard next time. It allows you to skip queuing at security, priority boarding etc. You can arrange it in advance though I think you need proof - diagnosis or gp letter. We have yet to take ds abroad, we are such chickens. I have visions of him insisting on going in the cockpit or refusing to stay seated...

dimples hopefully this is one of those situations where he’s fine with your mum once he’s there. It must be awful knowing there’s nothing you can do. I hope you found some room in bed in the end.

Thanks for the good wishes re. sleep. 5:18 again today (he’s so precise). It’s come at a good time with the clocks going back. It’ll probably take him a week to adjust though. I do worry that once he’s back at school it may resume if there’s an anxiety element to it. Guess we’ll have to wait and see.

Dh has today off so we’re off to the zoo. It always means at least 90 mins in their soft play barn

Glad it's not just us dimples. Hope your day at work is going well.

The holiday sounds brilliant light and amazing that your dd coped so well. Like you say it is so hard to prepare them for all eventualities. I do think we are very lucky to be living in a time where it is so easy to access information quickly. The number of times I've had to quickly google an image!

Hope you're having a nice day at the zoo open.

It was a bit calmer yesterday and this morning until ds found a can of shaving foam and redecorated downstairs 🤦‍♀️. Now in the middle of a bath (currently running at 40mins). Then probably back to back viewings of Tangled this afternoon!

I am looking forward to Monday!

Of course my boy was fine for my Mum but I feel exhausted having spent the night hanging off the edge of the bed and the day feeling tense about how he was doing.

Light my sister and Mum flew to Oz in the Summer with her 3 kids. Her 6 year old twins are on waiting list for ASD assessment and she got lanyards - they said they were treated liked VIPs! I have also flown to Oz with my boy (my brother and family live there) and I'd definitely get one next time.

I'm glad he was fine in the end, but it is thinking through all the possibilities that is so exhausting isn't it? I often catch myself warning DD about things coming up without even thinking consciously about it, but then other times manage to miss something massive/obvious...

You're right Light It's the thinking about it that's the worry.

Was having quite a nice walk to school when my son started to walk on the edge of the pavement (on a quiet resi street) I asked him to walk on the other side of me but he refused. He then walked into a car wing mirror. Strangely no tears, he came around to the other side of me and said 'you were right, Mummy'. A definite first!!

That's amazing dimples!!

OMG - frame that moment!!!

dimples that’s brilliant. What a moment!

How have you all found the transition back to school? Ds has an inset day off today so goes back tomorrow. I don’t think he’ll be keen. His improved sleeping continues. After a blip yesterday he slept until 5:45 this morning despite the clock change.

He’s been really good this half term. The same time last year was a nightmare, a couple of really awful days where I probably felt lowest as a parent so I’m glad that wasn’t repeated.

We are now more than 10 months post diagnosis, I can’t believe how quickly the time has gone and how much he’s come on since then.