Reception auties 2018/19 - thread 2

[openupmyeagereyes]

Thanks to LightTripper for the thread title. This is the continuation of the thread for parents and carers of dc with autism in their reception year at school. Please join us if you can or, if you have dc due to start reception in 2019, feel free to drop by and ask us questions.

Thread 1

Ds’s fave TA is off sick today. I am a bit apprehensive about how this morning will go...

I took DS for his 27 month check today. He is still pretty speech delayed but the HV seemed to think (and I agree really) that he is using the language he has very well, so she recommended waiting a couple of months before seeing the SLT. He seems to be developing, just slowly (so he's got quite a lot of words now, but has still never used 2 words together). We're really lucky in our area that we have SLT drop-ins you can just turn up to most days of the week somewhere in the Borough, so it's easy to just pitch up and get a bit of advice or reassurance (or if needed, get fed into the system for more intensive help).

Because I was taking DS to his health check he came with me to DD's drop-off today, and she was having a lovely time showing him off (slightly funny really as he is at pick-up every day - but doesn't often come to drop off as I do that on the way to work) - but I guess there is more time at drop-off whereas pick up is a bit frenetic. Made me go a bit gooey... I couldn't have imagined a year ago she'd be doing that.

Light that’s so lovely 😍

At least you know what to look for with your ds. It’s great that he’s using his language well and that you have the SLT drop-ins. We have regular ones too at different health centres in nearby areas or villages. It was what kicked off our path to diagnosis.

I’m quite anxious about pick up today. Our SLT is coming later but I won’t see her as I’m helping out at school with an event. I’m interested to see what dh makes of it.

Is it a new SLT open?

I hope DS copes well without his usual TA. DD is always a bit unpredictable with this stuff - I think there are so many factors that go into whether they cope OK with change or not.

P.S. I finally sent you the Beam stuff open - sorry it took so long!

Light I have read through some of them. Thank you so much for the information, it’s very generous of you to share it. One randomly ended up in my junk folder so I haven’t looked at that one yet. I really think I’d like to give it a go but I need to persuade dh and I’m not sure how easy that will be!

Ds apparently managed brilliantly, though I think he spent a lot of the morning with his teacher which I’m not sure was the plan. He had a bit of an episode in the last half an hour because he didn’t want to come in from the garden. By that point in the day I think he’s just really tired, especially because his sleeping has been bad.

SLT is not new, we’ve been seeing her since around October. I’m just not sure if it’s helping anything. Dh has only seen her a couple of times when he’s been working from home on the day she’s here. I’m interested to see what he thinks.

We went to another birthday party today. Ds lasted nearly an hour and then wanted to leave. He has a very unique style of dancing, lots of flinging his arms around

He’s so different to the other kids when they’re together in a big group like that. I feel like his autism is more obvious than it used to be.

Open we have been to a birthday party today too. He doesn't get invited really but he's had 2 invites in the past 6 weeks.

Ds is exactly the same, sticks out like a sore thumb, it's clearly obvious he is a SN child & the older he gets the more he stands out bless him.

I don't see him with his class bcos he starts later and finishes earlier at school so I don't see the other children or parents, but I've seen today and at the last party a lot of the children look terrified of him. They either freeze or flinch when he goes near them. He sat on the floor beside a little group of girls to eat his food and they shuffled forwards away from him. (Which I thought was really nasty!) Children don't talk to him either and I noticed that at the last party too he doesn't notice though so never mind.

When they lit the birthday cake at the end ds barged in and tried to grab the lit candles he got told off by the dj for going behind the dj area a few times and touching what he wasn't supposed too and he kept making a beeline for the party food 10 mins into the party lol, & he didn't understand the party games, but he had loads of fun for 2 hrs running wild.

I was having to walk around and supervise his every move which makes him stand out more obviously.

He joined in though, dancing away and breakdancing and god knows what ever else it was he was doing on that dance floor

I'm pleased I took him though. X

I think the dj realised he had SN quite quickly when he wasn't listening and didn't understand the instructions he was giving him, he gave ds a medal and a prize at the end which I thought was really nice of him.

We’ve not entered into the world of class parties yet, not that he’s not been invited to them as I just don’t think the nursery are having all inclusive parties yet. Hopefully next year in reception it will start. My ds is pro social, loves everyone and is very kind hearted but when I watch his interactions he can be a little in their face. And then he doesn’t know how to carry the conversation on bless him. We were in the park the other day and met a lovely older boy, about 8, who really looked after ds. He did later ask me why he kept saying “yes of course” to him all the time...hard to explain echolalia to an 8 year old!

So we are now fully signed up to “the club” - ds had his final assessment on Thursday and they gave us the result straight away as they explained it was an “easy” decision for them. Basically because he ticks so many of the boxes, although none of them are really severe (tell that to me on w day he’s having a tantrum because I’ve used the wrong word...)

Glad it’s done though, glad we don’t have to fight for it , glad I wasn’t seen or treated as an over reactive professional mum and glad that they recognised his difficulties despite being a lovely little boy.

Jeb how are you feeling about it? I’m sure you’ve read all the threads. It’s completely normal to feel a whole range of emotions post diagnosis, it’s a personal process that everyone has to go through.

I read that children with social difficulties gravitate more easily to younger or older children. Younger children are less threatening than their peers and older children bridge their deficits. It makes sense.

There are already some shifting dynamics in ds’s class. One little girl who was best friends since the first day with one girl is now best friends with someone else. It’s tough being a girl at that age.

danni that was sweet of the dj. It sounds quite an exhausting party for you too. I’m glad that he was invited and that you got a chance to see the other children and parents but I’m sorry that some of them weren’t kind to him. It’s hard to see. Hopefully all the dancing has tired him out a bit.

Ds will talk a bit to other children at these things but not a lot. I think he finds it strange seeing them out of school. There were a few others that didn’t mingle much and a couple of the girls sat with their parent a fair amount. It was the same at the one we went to a couple of weeks ago.

Ds still waking early most days. 4:30 today but my turn for a lie in tomorrow.

We haven’t done any phonics or writing the last couple of days. Today he blended a couple of words and wrote his name in the birthday card. I let him write it with the pencil in a fist grip, it’s neater that way!

@open I think I’m doing okay with it...I would say that I came to the conclusion that he had Autism for sure quite a few months ago and I probably found that time harder than the official diagnosis. I think back then, when he was around 3/3.5 I was probably trying to explain away what we were seeing and trying to stop/change some of his behaviours - it sounds awful now I say it! But over the last year I think I’ve seen it more and more and come to terms with it. Of course every step of the way there was some part of me that wanted to hear that all this was unnecessary, that he’s just a bit delayed, that he’ll catch up and I should just stop worrying all the time. No one ever did say that though, people just agreed with us which could be heartbreaking at times. They asked us if we had any questions, and of course I have so many...but I didn’t ask any of them because I know they don’t know the answers. Will he be okay? Will he be happy? Will he have friends? Will he understand who he is? Will he be okay with who he is? Will he be able to love and be loved by others? Will he be able to do what he wants and be who he wants to be? Will we ever get a break from him being hard to manage? So many questions, and I’m sure many of us have the same questions for our own dc (and not just those with asd) that if we think or dwell on them too much can lead to heavy hearts and high levels of anxiety. BUT, I chose to trust in some wise words - today has enough troubles of its own to worry about tomorrow’s today. Today was a good day, both dc’s we’re happy, we rode trains all day long, talked on every pay phone we came across and were treated to an ice cream by a stranger. Happy days.

We finally had a paediatrician appointment yesterday (it had been postponed 4 times). DS has been seeing the same consultant since he was 9 months. Last appointment I asked if he could be assessed for ASD - she was v resistant to the idea. Said she had never considered it (he has had global developmental delay label since 9 months). I reminded her of his social difficulties with peers, sensory issues, unusual obsessive interests and rigid thinking. She acknowledged that they were all autistic traits but still did not want to refer him - she advised to wait and see. So I thought yesterday might be the day - oh no, consultant was on maternity leave so we saw a different consultant who would not even countenance the idea. She was all 'look how sociable he is'. 0h well never mind we have an EHCP and DLA so I'm not sure what difference a diagnosis would make.

Glad that you had a good day today Jeb.

Good that the DJ recognised your boy's achievements Danni

Open it sounds like DS is doing really well.

I'm going away with work Monday-Friday - I have never been away from DS for more than a night before. I'm freaking out but when I tried to explain to DS about my trip he just walked away! I want to fast forward to next weekend.

Jeb not all behaviours are desirable, autism or not, so don’t feel too bad. Everyone has to learn, even autistic children. I think the key thing is probably to try and understand what’s changeable and what’s just an inherent part of who they are. That will probably be our life’s work as parents of autistic children.

I’m glad you had a good day yesterday.

dimples that is frustrating but, as you say, they key things are already in place so that’s the most important thing for now.

I would be freaking out about the work trip too so you have my sympathies. Hopefully it passes quickly and you can have a lovely weekend together afterwards.

Ds had a tricky day yesterday but better today thankfully.

Next week will be a bit different. Sports day and then the school summer fayre. They’re also planning a class trip for three weeks time.

I’m panicking a bit about the trip. I’ll be going but it has the potential for difficult behaviour. I’m also a bit worried about sports day, mostly because I don’t want people laughing at him. All of these things could also be fine too of course.

Is your sports day with parents etc. watching too open?

DD was supposed to have hers today and was worried about it (she hates being on the spot or being centre of attention). I talked to the school and they said they weren't highlighting winners or anything like that - it was all just about participation so there shouldn't be any marking out of anybody (though I think DD was more worried about the risk of winning than I was, given our lack of family sporting prowess )! Anyway, I asked them to talk to her about what would happen which they did and she seemed happier (but now it's been postponed because the ground is so muddy/soggy anyway).

Trips are hard but hopefully having you there will help him through it. Presumably it's somewhere he hasn't been before - can you show him pictures and stuff? Can you talk to the school about what will happen if he starts to struggle? I can imagine with DD she might be more likely to express her unhappiness if I was there IYSWIM (rather than bottling it up for home time if I wasn't...)

At sports day at DS's school they have all sorts of activities going on at the same time and v little individual focus. When I went last year to watch my niece and nephew I was v impressed how inclusive and unpressured it was. Hope that yours is the same.

I'm on my work trip and missing DS terribly. Apparently he is doing well but he looks pretty anxious - meanwhile I am coping badly. As soon as I got back to my room this evening I had a cry. Roll on Friday!

Yes, parents will be there. The children will be split into house groups and there are stations that they rotate around. Possibly one of those situations where he will either just decide he wants to go back to his classroom or he’ll have a lovely time. Hopefully the latter! 🤞

The class trip is somewhere he hasn’t been which is better as he has routine things he likes to do at places he has been to so that probably would have been more problematic. My concerns are more that he’ll want to stay in one particular place for ages, won’t want to eat with the class, may want to leave early or not at all. That sort of thing. It’s about 19 miles away so around half an hour on the bus.

Bless you dimples. Have you FaceTimed or Skyped or will that make things worse?

Light hopefully your dd will enjoy hers once it’s been rescheduled.

Yeah, Open we are Facetiming every morning and evening. Every time he asks me if I'm on my way home.

Feeling a bit calmer this evening after a nice tapas meal and some wine

Open ds sports day was a fortnight ago. I never know what to expect with him since his mood / behaviour is so unpredictable. He got well and truly stuck in, not always at the same time as the other children ie ds didn't go when the whistle blew, it was either before or 5 minutes after

They had practised the races for weeks during PE so he knew what to do. I was so proud watching him because he was taking part and that was the main thing. Some of the parents get so aggro shouting at their kids so they win ds came last in almost everything, who cares!

He did a 3 legged race and he held the boys hand he was running with, I got it on video and it was ds who initiated the hand hold when I watched it back

He had his 1-1 beside him on the field and he did a couple of races with his teacher too. He did v well overall & his 1-1 bought him a big bag of sweets, she was super pleased with him!

Bless you dimples not long until the weekend! X

Open what do you think to the write from the start book? It's currently in my amazon basket..... I've noticed the reviews repeatedly mention autism so it's sold it really but it's quite pricey so wondered what you thought?

danni sports day sounds amazing, you must have been so proud of him. I will be super happy if ds's goes so well. Dh says I can’t wrap him up in cotton wool and I know that I can’t. I just hope he enjoys it.

I can’t give much of a review of write from the start yet as we’ve only done a few pages so far (we haven’t done any for several days) but you do get 2 largeish exercise books and a teacher guide. So a decent amount for the money I think.