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.

Dimples sorry about your meeting and your difficult colleague. I've been in that situation in the past and it's awful when people turn out to be untrustworthy.

Seeking sorry to hear about your DS's accident. Must have been a scary time. Glad things seem to be improving. DS isn't too into his scooter but spends lots of time parkouring on any bit of concrete or play equipment so while he has good balance I often have my heart in my mouth.

Light well done on reaching a decision about schools. It's tough isn't it?

We've finally made a decision about schools and have also opted to keep DS where he is. It was v close as the other school has a better rep on paper but we thought he'd benefit from continuity. I'm just so relieved to have made our choice so we can start prepping DS.

The school I went to see was lovely. Small class sizes, really supportive and even had a pool! But I just didn't have that gut feeling about it. So I'm sticking with my decision to send ds to mainstream. I want to keep him local and in the community for as long as he's happy. Definitely agree about there being too many decisions seeking. I'm sure you've made the right choice.
The EHCP caseworker got back to me today with some concessions and some nos. I'm really not sure how much I want to fight them, I'm going to have another look over it tomorrow and pick my battles I think.

Dimples I'm sorry about the meeting your colleague sounds awful! Good luck with the school visit tomorrow.
I've found using makaton has really slowed my speech down and made me think more about the amount of words I'm using. I love 'freeze' think I'm going to try that one out!

Open great about your ds's behaviour. Finger's crossed for you for the EHCP.
Have you read the explosive child book? I thought it was really good for thinking of ways to give your child choice so that they don't have so many triggers.

Glad you've made your school choice too Sue.

Sue I’m glad you’ve also decided on a school. Is your ds excited about it? Ds is, he’s been wanting to go to ‘big school’ since last year, but I don’t think he has any real idea what he’s in for. We are going to the school Feast Friday evening, that will be the first time he’s been through the gates.

liv I think you have to go with your gut, that’s what we’ve done. I did the same with nursery and it was the right decision. School is a completely different kettle of fish though. I was reading Faithmummy’s daughters post about her typical school day and it was so sad. I hope our dc’s experiences are better.

I have read The Explosive Child, perhaps better re-read it though...

I have my last parenting class on Friday, it’s about behaviour so quite timely. I will miss it, it’s been nice to discuss issues and be with people experiencing similar problems. I looked into the EarlyBird programme but our county doesn’t run them and I’d have to drive for about 80 mins to go to one out of county. Given we don’t know how ds will settle at school it seems too much of a stretch. I’m already doing our county’s version and there’s a 7+ version to do later. I need to take the time to consolidate and use the information I’ve got already rather than looking for the magic wand (that’s what it feels like I’m subconsciously doing). I’ve still got lots of books to read too and I’ll be able to get back to the monthly support group I was attending once Ds’s Monday playgroup has finished.

With regards to the very structured playgroup, we had the third one yesterday. A few days ago he started saying he didn’t want to go and this week he was quite anxious at first and vocal about wanting to go home. However after that he did join in more activities than the previous week so I’m classing it as an overall improvement.

Well we had a letter today from the registrar who saw ds in December. They were asked to provide an update for the EHCP. Well they haven’t seen him since so the update is just highlights from the original report . However it does say in it that he ‘received a diagnosis of ASD following a multidisciplinary assessment’ compared to the ‘likely to qualify for a diagnosis of ASD’ in the original report. I guess this means we do have a formal diagnosis.

Open - I had the same experience of professionals being asked for updates just sending previous reports. I am glad that you have more clarity re diagnosis.

Yesterday we met a new OT at the school. Bit of an odd meeting as she asked what my concerns were and everything I said (e.g. accessing toilet, need for sensory breaks, height of desk/chair). She said we'll come back and review in September. Then as I was leaving I asked the head of EYFS what the plans were for supporting my boy today (school visit with rest of cohort without me) and it was clear that this had not been thought of (EHCP states FT 1:1). She said not to worry...

Couldn't sleep last night for worrying. Any way thankfully today went really well (he had support), left me happily and came home cheerfully. So relieved!

That’s brilliant dimples, not the worry obviously, but great he enjoyed it. Do you know who the support was? Is it likely to be his 1:1 in September? Is the OT a private or LA one?

We had excellent news today, an email asking about dates for a planning meeting to provide input into the EHCP. I am so happy. Obviously there’s no guarantee that it will include ft 1:1 support but fingers crossed

The TA who has been earmarked to be his main 1:1 is currently recuperating from an operation so unfortunately he has not had an opportunity to meet her. I'm hoping that we have an extra visit in July to meet her.
The support he had today was from one of the Reception teachers who is lovely but just about to go on maternity leave - my son's teacher is currently on maternity leave but has come in for transitional visits.

Great to hear of your EHCP progress Open

Great about the EHCP open and that you have some clarification on the diagnosis. I hope the meeting goes well.

I'm glad the school visit went well dimples.

Weird way to get some clarity open but I guess it's good anyway - should mean nobody can get out of providing support by claiming it's not a diagnosis?! Glad everybody's school decisions seem to be coming together. It's really nice to be able to start to talk to DD properly about big school now we've got a firm plan. Phew!

We had DD's school fete on Saturday. Honestly I found it all a bit overwhelming and intense (so many people and noise and different stuff going on!! Luckily mostly short people so that helps... not so for our littlies!) So unsurprisingly DD struggled a bit and didn't want to do any of the activities, but she did seem to enjoy sitting down for tea and a cake, and had a little play with a couple of the girls from her school on the slide after that, so all in all I think she did pretty well. I think OH was a bit disappointed she wouldn't do all the stuff like hook the duck and those kinds of games - but I said to him I really think this stuff is "A-level" with all the sensory stuff going on around, and we should just focus on the more manageable (and important stuff) like whether she can interact one-on-one with peers in a quiet place and whether she does OK in school in lessons before we worry too much about the really difficult stuff. I mean, a school fete is like playtime on steroids really isn't it, hardly surprising they find it hard?!!

The only funny thing is, although she finds it hard when we do "You Choose" and you have to choose what place you would go to in the imaginary city, DD quite often chooses the fairground. There is something that draws her to those really noisy/overwhelming environments even though when she's actually there she isn't able to do much more than just "be". Maybe she finds the stimulation enjoyable in some way, even though it stops her taking part!

Hope you all had good weekends too. Apparently it's going to be a hot week!

I love phrasing it as like 'a-levels'! It's brilliant that she coped so well with it light.

We are going to ds's school on Friday as they do a teddy bear's picnic for all the children going into reception next year. Hopefully it won't be too manic!

Well done Light's DD. We have school fete on Sat and sports day this week. He finds both things stressful but enjoyable so hopefully he'll have a go at some games and it won't be a nightmare getting him off the bouncy castle.

DS still has no interest in playing or interacting with other children which is tough and starting to be awkward with other parents.

I do feel sad when I look at the gaggles of his nursery friends chatting about going up to primary together. He's happy enough though so we have to encourage him and wait until he's ready.

Light I’m glad that your dd enjoyed the fete and was able to play with some friends happily. Has she been to it before or was it the first time?

liv I hope you all enjoy the teddy bears picnic. It sounds fun.

Sue I hope the fete and sports day go well. My ds loves a bouncy castle too, it’s hard to get him off sometimes so we need to make sure he has a good long time first.
It must be hard to see him not interacting with other kids, does he play ok with you and other adults?

We had our follow up at the CDC this morning. He remembered the building and was able to play in the garden there before we went in. He actually came into the consulting room for a while and was weighed & measured though he didn’t say much. I asked the paed about the ambiguity in her report and she said that sometimes she uses softer language due to some parents not wanting a diagnosis/label. She actually had a version of the same report in front of her which said that he’d been diagnosed rather than the ‘likely to qualify’ line 🙄

Whilst I was talking to the paed dh took ds back out to the garden and apparently he was running around with another boy who was non verbal (but using sign language). He spoke to the boy and told him his name which I don’t think he’s ever done before unprompted. I think that’s real progress for him

He did ok at our village feast on Sunday, he’s been three times now so hopefully getting more used to it. When dh brought him to the Christmas Fayre we ran at his nursery he wanted to leave straight away. I think he finds it hard when a familiar place looks completely different.

Yesterday afternoon I took him to the paddling pool at a local park. I found the whole thing quite stressful as I wasn’t able to take my eyes off him. There were multiple exits and he would keep randomly running to a different part. He wasn’t listening much and would periodically go up to another child and either push their hat off or try and take something they were playing with. Swings and roundabouts...

I also spoke to the paed about the hideous period of bad sleeping we had after our previous appointment and she has put in a note to the gp that they can prescribe melatonin if it reoccurs and we want to try it. I’m hoping we won’t need to but it’s good to know the option is there if we get desperate.

She went last year and managed to take part in a few more things open. I think it's a mix of factors: I think we went earlier last year and it was quieter (good lesson for next year) - but also she was less aware/worried about what other people think last year. Now she talks about what other people think a lot (e.g. at school they are practising for the end of year concert and last night she told me she didn't want to sing because a Lady called Ruth was coming in to play the piano and she didn't know her: her teacher confirmed that she was happily joining in when it was just her classmates and teacher, but got very anxious when Ruth came in... I'm hoping as they have more rehearsals she might get more comfortable, but we'll see).

But I also put end of term concert in the "A-level" category (or at least GCSE) and try not to worry about it too much!

Good that you have the Melatonin letter - I've found in similar situations that sometimes knowing you have the option there if you need it sometimes makes it bearable enough that you don't actually need it...

Light definitely time/busyness will have an impact as well as how they’re feeling on any particular day. We all have events planned that should be fun but we end up dreading or wishing we didn’t have to go to. Our children will be no different.

Hopefully your dd will get used to the piano player and enjoy the rehearsals again. I hope the performance goes well for her.

I suppose we’ve got the worrying about what people think to come. It’s possible ds is starting to consider that but he’s not yet articulating it. I talked with the paed about when he starts becoming aware of his differences. She said that it’s really important to find what they are good at and use that to build their confidence.

Well, my excitement over the EHCP has been dampened somewhat. We had a letter confirming the planning meeting which states that the meeting is to decide whether an EHCP will be issued. In the email to arrange the meeting it said it was to input into the EHCP. An email from the salt this morning said it was good news as it meant it was ‘almost certain to be agreed’. So I really don’t know now. As DH said, how will a meeting with us, after all the information that’s been sent and gathered since March, provide additional evidence for them to be able to make a decision? It’s madness.

Oh God open that would stress me out but hopefully it's just sloppy language. I know discussing DD's diagnosis report with BIL (who is a child psychologist) and how important it was to us that it listed all her strong points too, he said that he thinks its easy to forget as a professional that parents (and eventually the child) will be reading these things, and just to draft it in a "professional to professional" way just focusing on the "problems". It's human nature not to be careful I guess, but how frustrating. When is the meeting?

It’s not until the 10th. They offered the 2nd but it clashed with his first school visit (can’t believe it’s on Monday!!!). Hopefully it’s just a standard (crappily worded) letter. Why would you need a planning meeting if there was no EHCP? Grrr.

Yes, reading reports is tough. We had the EP report recently and I’d hoped it might contain some positive information because ds’s 1:1 told me that the EP had said he was bright and could do well in ms. None of that was in his report and it made me question whether I’d either misheard her or she had misheard him or was just trying to make me feel better. I know that they’re trying to get you the EHCP but it’s not like they issue you, the parent, something more balanced outside of that.

Exactly! It's so obvious that its not "for" us (or our kids) - it's just what's required to make "the system" work. Fair enough I suppose but not very a very human or helpful guide for parents who, realistically, are going to do the lion's share of helping our kids develop and learn to function in the world!

Lovely what the EP said though, and I'm sure you didn't mishear. But it's a shame they don't realise that parents need to hear this stuff too (and so will our kids in due course). It can't all be "deficit" this and "deficit" that.

I emailed our NHS SALT and she said it’s not yet guaranteed but that they would not be likely to arrange a planning meeting if there was going to be no EHCP and she believes it’s to agree the level of support he has. She said to emphasise how well he’s doing with 1:1 support at nursery.

Open at my planning meeting the case worker handed around the draft EHCP at the start but said that the purpose of the meeting was to agree what needs were and what support was required to determine if an EHCP was needed.

After about an hour of running through draft EHCP she said, ‘Just to address the elephant in the room I think xxxx needs an EHCP, does anyone disagree?’ Fortunately no one did and I started breathing again! I found it a rather weird way to do it - during the 2nd hour I think I gave a more balanced account of my boy. In the first half I was in ‘fight mode’ for the plan!

My boy had his 2nd school visit today and it went really well. A Mum whose daughter goes to the same nursery messaged me to say that her daughter told her that when she got upset at school my son looked after her. I can’t believe this - I am so proud of my boy! His social skills are really coming along.

dimples how wonderful, what a lovely boy.

Thanks for your EHCP experience, hopefully this will be the case for us too. I just can’t wait for it to be agreed.

That's so lovely of your ds dimples.

Good luck with the meeting open. My caseworker told me that it is very rare for councils to go through the assessment process then not give an EHCP as they have already invested quite a lot of time and money in it.

Ds did pretty well at the teddy bear's picnic today. A little girl from his nursery was there and tried to talk to him but I think he was too overwhelmed to engage. It was lovely to meet his new teacher and to talk to some of the other parents (when I was allowed by ds).

We have our final EHCP, got it in the post today! I kind of can't believe it. So much stress to get to this point to all of a sudden have it!

Thanks for the reassurance liv.

So glad the teddy bear’s picnic went well. Amazing that you have your final EHCP. You must be so pleased. Well done for getting there, I hope you celebrated

Thanks Open!