Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

I don’t think it would because intellectually he knows that he needs the sleep and should be in bed, it’s just in the moment his desire to just watch YouTube trumps everything.

@openupmyeagereyes yep, sounds familiar. And tough. Hope it goes more smoothly tonight. I'm very much looking horward yo the cooler weather!

Yes, I see it’s already been pushed forwards a day

I know you have explained Open before about not having access to a paed to prescribe sleep meds, is that the only reason you don’t explore this more? I don’t mean melatonin especially although you could easily double DS dose (is he still only on 2ml?) but there are lots of other things that would keep DS asleep (as I’ve said to death alimemazine has been a game changer for us.)

That would be my advice, always, because it’s the one thing you can control which makes it an easy win.

party stopped thankfully not long after we chatted!

carrie GP can’t prescribe and we are on CAMHS waiting list. Ds will not take a liquid so anything he has would have to be a tablet.

If you were very desperate could you just pay for a private paediatrician appointment? You may not be tho if things are generally ok. Alimemazine is a liquid but I’m sure other stuff isn’t and it may come in a tablet form I’m not sure.

CAHMS is a joke. I think DS has been on the list for 2 years. I don’t want anything urgent from them but if I did and could afford to pay someone privately I wouldn’t be going down this route.

I’m not very desperate because when he sleeps until 5 it’s tolerable, he’s have to be up at 6 on a school day anyway to have some tv & play time before leaving. I don’t see the point of trialing medication for the sake of 1 extra hour. Waking at 12:15 is not the norm, atm anyway.

Yes, I thought that. Heat supposed to break today so fingers crossed! Yesterday was unbearable!

Sorry that work is rubbish ElizabethBennett'sBoots and sleep probs with others.

I am looking after my DN (4 and 5, 5yr old has SEN) today whilst my sister and BIL do the Great North Run. It's a bit like Squash and a Squeeze story here - I feel like when they go everything will seem calmer and less chaotic. Not long to go now!

Also sorry about work @ElizabethBennetsBoots . Hope something comes of the new opportunity you identified.

Ahna, how long is DM with you? Were you close when you lived in the Uk? Re friends in the NL, are there any mums groups with DDs schools? How about your work colleagues, are they nice? As I’ve got older snd look at my ‘group’ I’ve sort of developed contacts at different levels. So I have I suppose more superficial relationships with say mums of the kids or work friends that don’t match my ‘I’d trust with my life’ old school friends but those people are on tap more readily for coffees, lunches, drinks after work etc and so fill that gap. It must be hard not having fam and friends there, but are those opportunities that could plug a social gap?

I think you have to really put yourself out of your comfort zone to make new parent friends when your child is ND. And be prepared for it to not work out. I wouldn’t ordinarily give someone my phone number and ask if they want to do something but I’ve done it a few times over the years and some have become good friends.

Yes. I do enjoy though the superficial (poor word choice!) friends acquired usually from work who are unconnected to the DC and to whom I don’t really talk to about the DC. Perhaps there’s the odd ‘how’s the kids Carrie’ and ‘yeah fine’ response but that’s it. I do like having those contacts where DS can not be the forefront of my mind as he is most of the time.

Yes. Also important to have SEN mum friends IRL though. You see so many people on these boards who have nobody to talk to about the difficulties, as well as the triumphs.

Yes. I only have one and that’s inadvertent (school mum who happens to have an autistic child.) Beyond that, no one IRL (and her child is very different to DS.) So when it comes to many things with him I don’t have anyone!

Yeah my work colleagues are ok but they are colleagues not friends - ticks a bit of a social interaction box on the days I’m in the office but we wouldn’t communicate out of work (and nobody lives super near me either). DD2 is starting dance classes every weekend so maybe through that. I’ve tried parkrun / running events but people are quite cliquey. but will keep trying !

@bryceQ did you have a better night? DD was up from 230. Grim, although she did ok over the weekend so I can’t complain too much.

@Ahna65

He was awake till 5am then slept till 9.

My grandma just passed away suddenly I'm in a bit of shock, don't know what to do with myself.

Argh, the wake windows sound so familiar. So rough.

aw I’m sorry to hear about your grandma , hope you have support around you to be able to take it easy while you process

I live in London and my family are in the north. I'm waiting to hear what they need. Just the most awful limbo.

My son doesn't have a clue... Just his normal self

I have not made many friends in recent years. 2 'proper' ones - I met a couple on the adoption training I did for DS they ended up adopting a boy with SN same age and the other through a FB group.meet up for single adopters where only she and I (and our boys) turned up. Yesterday was my 16th anniversary of starting my job! So some of my work friends have seen me through lots of up and downs. None of my close/long term friends (from growing up/uni/graduate job) live close to me which is a shame. I have found with school Mums I have become less sociable/chatty over time - their children's experiences of school, their gripes about school and family life seem v different to mine.

By the way I had a telephone appointment with IPSEA re DS's EHCP. In the past I have found it difficult to book appointments but it seems much easier now and the advisor was v helpful. I had used the National Autism Society Education Rights helpline in the past but that seems to have closed.

Bryce I’m so sorry for your loss

bryceQ so sorry to read of your loss. When my Gran died about 18 months ago DS kept asking if she was now a zombie. It actually has clicked with him a bit now although he keeps observing that our NDN is v old and muses on how long she has left to live.

I’m really sorry to hear that @bryceQ

Ps you have all jinxed me! Last night DS asleep 9.30, then up 11.30! Got in bed with me and tossed and turned for an hour or so. Went back off about 1 (ffs….. 😡). I find the problem then is I’m wide awake!

carrie Ds slept until just after 5 today. I was awake at 3:30