Primary school auties : spring 2021 and beyond - thread 6

[danni0509]

Hi. New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

Thread 1 - www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2 - www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3 - www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Everyone welcome x

Well he’s been discharged.

She said there is nothing more salt can do for ds at this moment in time.

She said his speech is at a year 1 level (2 years behind) and his deficits in his language / understanding are related to his asd / development delay & not helped by his attention.

She said in 1-2 years it would be an idea for his school to refer him back to that boroughs speech service for an up to date assessment (he can’t access salt from our borough if he’s in another borough for his school so it would need to come from there) she recommended 1-2 years to see what impact specialist teaching will have.

She said anything she would be recommending therapy wise he will be accessing at his special school as standard.

I didn’t realise this but she is from the town Ds school is in and she said x school is really good she was the visiting salt for 2 years.

Well what a surprise danni! Did they say anything about him not wearing a mask?

At least he will get support in his school, it will be more regular too so much more beneficial. I would keep a log of any changes that you notice.

Ds got how and why last, I'm sure it will come to your ds too when he's ready for it.

Another hideous early morning here, 2:45 am. I took him to a local country park this morning and he insisted on going through a section that was shut due to ash dieback. When he gets something in his head he just will not listen. It's incredibly frustrating and our walk ended on a negative note which is a shame. I'm feeling like a right miserable cow today, I need to change my attitude asap.

No one mentioned a word to me about him not wearing a mask open.

Sorry about the early morning. Ds had me up at 3am yesterday morning, his usual is about 5am now a days which is bad enough but at least once a week he’s waking up 3am sometimes 1am then doesn’t go back to sleep. 😴

That's really good @danni0509 that his new school will hopefully have that level of integrated support. Oof on the early wake up!
@openupmyeagereyes that is early. I know what you mean about getting an idea stick and then being determined, we have that too, can be so hard.
So DS at bedtime tonight decided to reenact his pillow in the bath routine and was so hyper then angry when I stopped him. Then he said so 8ll hit you then, so I pretend to do hig 5s...grimly got him into the bath but he was hyper trying to throw water out over me...realised he'd had three cakes v
Before bed. Do ant other DC react so strongly to sugar?? He finally fell asleep at 9.45...

@MagratGarlikInDisguise that’s how ds is normally.

Like he’s had the E numbers from a tube of smarties injected into his veins every hour on the hour. The kid drives me mental! 😂

Yep DS is usually driven by a motor etc but lately the sugar has really been making him such more hyper and he gets into these hyper moods which then become learned routines...need to think of something to break the cycle!

Magrat the obvious thing would be to reduce refined sugar, especially from the afternoon and evening. Not always easy though.

Ds doesn’t seem any worse with sugar but then he eats only a handful of foods so we couldn’t cut anything out anyway.

We met ds old 1-1 this morning, we went to the park for an hour, she text me twice and I’ve been unsure whether it was right to meet as didn’t want to unsettle him but then I felt bad as she said she’s missing him so thought I can only try and see how he goes.

I had to meet her at 8.30am as I can’t take ds on a park when other children are on because he hits (especially the toddler age kids) so we have to go first thing.

Ds was fine about seeing her and hasn’t mentioned anything since. She bought him some sweets and walked us back to our door which he insisted upon. She’s going to text again nearer the summer holidays and meet again.

It’s ever so weird, I was at the park still calling her miss xxxx 😂

A family came on about 9.30 and they had a baby in a pushchair so ds ran so quick to the pram got the babies dummy and ran off but he grabbed the babies face as he was getting the dummy! Anyway old 1-1 grabbed one arm I got the other and we just got him off the park ASAP.

Sounds like you had a good catch up @danni0509 but also a bit odd seeing the old 121 again.
Your DS' hyper moods sound so much like my DS. We've cut back on sugar which has helped a bit but still there are hyper moods. Today we went to see my parents and ge was having such fun but I think we stayed too long and he got into one of his moods, grabbed raspberries from the fridge and running through their house with cream coloured carpets, when my dad tried to stop him DS hit him. Managed to bundle DS into his shoes and say a quick goodbye then he was fine once he was put of that situation. They also kept saying 'good boy' every time I managed to calm him down, which just started him off again! Argh. Really thinking about a private adhd assessment as I just want to help him manage these impulses, he really doesn't seem to understand what's happening, he said he thought my dad was racing him like in a board game.

Magrat if he’s like that and anything like my ds, every professional has said ds has severe adhd even his special school after his first morning etc so definitely look into it. We are going to trial ds on medication (don’t really want to in all honesty) but if we don’t try we will never know if it will help him x

Ds autism causes us all sorts of problems (sad, but true) but his adhd part causes us the more. He’s honestly wild! If I could get that bit under control I think life would be a breeze (well compared to now)

Thanks @danni0509 that's really interesting. I would definitely try the medication, I've heard from others that it's life changing and doesn't have to be forever. What's interesting with my DS is that he can be very intelligent in how he comes across, but when he's in one of these impulsive moods it's like a meltdown and you can't get him out if it easily, although he is never really still ever and struggles with motor skills and social skills etc.
Anyway, I'm getting my eyebrows waxed today, so that's something to look forward to!

Ds taxi starts tomorrow.

I’ve heard nothing from anyone on collection times / what the driver & 1-1 officer are called / what colour car it is / did they manage to fit the harness etc. Things I specifically requested to know and no one has got back to me.

These things are IMPORTANT.

I wanted to talk to ds about who was taking him, what colour car he was going in. Prep him in advance.

As it stands, I don’t even know what time he’s being collected. I’ve just got to hand ds over to two strangers in the morning and I don’t even know what they are called.

What a laugh.

I asked the local authority transport manager via email Wednesday morning (those questions above) and she replied to say she will contact transport provider and update me ASAP. Then I never heard back from her.

If he doesn’t have his harness fitted in that taxi when they come in the morning they can drive off as he won’t go in a car with out one he’ll cause a pile up on the motorway!

I just needed reassurance it’s not much to ask!

danni it's not too much to ask. I hope they get in touch today. I hope you enjoy your first longer day with ds at school and that you can do something nice for yourself.

Magrat sounds like a tricky situation at your parents.

We have had three 5am starts! It probably sounds hideous to most of you but I can't remember the last time he slept until 5am. It's so lovely but it most likely won't last, especially with back to school tomorrow.

This week has gone pretty well. We had a lovely day out yesterday and have had a playdate and seen my parents as well as downtime at home.

I hope back to school goes ok for everyone.

Honestly sick of ds doing all nighters now. Nothing makes him go back to sleep. Getting more and more regular.

He’s been awake since 10 past midnight.

danni ds was up 11:30-2:00 last night but did finally go back to sleep thankfully. I hope you got some more sleep too. He came in at 5 proud that he’d slept until 5 again!

Pretty sure the issue was back-to-school here.

Did you hear re. transport?

Ds went back to sleep at 4.20am and woke at 7.15 so least he did go back for another 3 hours but another 4 hour stint in the night drives me mental! Sorry you had the same with ds open.

His taxi came for him at 8.10am (he doesn’t have to be at school until 9.30am it’s about 35 min drive, so I thought his taxi would come at 8.55 ish) id done his pack up, he had had his cereal bar and drink and I had got him washed / dressed but not brushed his hair or teeth or anything and he had just gone on his iPad for 20 mins whilst I got dressed so I started frantically flapping. Thank god we live down a dead end street and don’t have a front garden so the taxi just parked on my front.

I went out and they got out and I was like sorry why are you here an hour early? They looked really confused so I explained that I had let transport manager know the new times and she was going to let the transport know and he was like I’m the transport contract manager and no definitely not she told us to get ds for 8.15 and he was to be picked up from school at 3.10pm (wtf)

Anyway he was lovely! He went away and came back at 8.50am and said he will get ds at 8.50am every morning and drop him back off to me for 2.30pm it wasn’t a problem and whenever his times change again let him know direct in future.

Ds got in the car told me to go away and was so excited sat in the back with his 1-1.

He had his harness installed and they asked me to show them how to use it as they haven’t had a crelling before.

He asked the driver what he was called and he said Stuart and ds said I love you Stuart! Haha.

So he was ok going, phew! Just hope it’s the same coming home x

I’m just in McDonald’s having a breakfast meal and going to get my eyebrows waxed and need to get ds some new undies.

Freeeeedom!!!!! 😂

Glad you’re having some you-time danni. I saw this today and thought it was appropriate!

Gah, it didn’t post.

Ds went into school, I’m praying he has a positive day because he’s ruminating on the difficult afternoons he had at the end of last term.

He’s tried to climb out the harness all the way home from school 😔 so they have got something called an angel clip (I’m assuming it’s what I know as a Houdini clip) for tomorrow morning.

Ds wouldn’t let the driver anywhere near him to get him out and I had to get him out the back, he wouldn’t keep his normal belt on either so when I got him out the car his head was stuck through half the harness straps and he was half in / half out not properly belted in ffs.

Not blaming transport, more ds! His aid was trying to keep him sat but he was giving them hell.

He’s mega stressed / anxious keeps telling me to leave him alone etc.

Poor little thing.

Hope ds had an ok day open x