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

Oh no dimples! Can you order 2 so you have a spare and save on postage?

Elizabeth have you read Till we have faces by CS Lewis? Quite Circe-esque.

@openupmyeagereyes ooh no I haven't, will add it to my list! Not read much the last few weeks! I finished Yellowface a few weeks ago, which I mostly enjoyed, and am looking forward to getting stuck into my tbr pile! Currently in an airport waiting for another flight!

Argh, ds has found out about elf on the shelf! (dh’s fault!). My little boy is growing up too fast

I hope everyone is ok. How are the holidays going Elizabeth and carrie?

We’ve had a fairly quiet week. A shopping trip, some woodland walks and meet up with a friend for a walk. Ds has been playing with his Lego a lot in between gaming/YouTube.

Not long until back to school. I can’t say I’m looking forward to it really.

We are back and settling back.into routine. I have holiday blues a bit, didn't want to come back this time! Have booked a mini break for Dec though! One more week until schools are back, I'm in for a training day later next week. So all back to reality, but I can feel autumn on the breeze now, and I'm.looking forward to pumpkin lattes, leaves crunching under my feet, cuddling up as the nights get colder, Halloween 🎃 🙂 Going to an outdoor park farm type place on Monday then I have the dreaded task.of school shoe shopping on Tues!

Hi. Don’t get chance to post much in summer holidays.

11 days until ds goes back, im so pleased I’ve not jumped off a bridge during the past 5 weeks, ive almost made it to the end.

Cannot wait to get back to my usual routine. Back to going to the gym (so good for my mental health) going for walks / McDonald’s coffee, just simple things that make me feel happy. And of course the much needed 7 hours a day respite.

I phoned CAMHS yesterday morning crying, dh had to take ds away from me as he was kicking the shit out of me, I phoned them when they went away, I spoke to the manager, she asked me to write everything in an email and she would pass it over to the dr, got ds home, I calmed down after ds had done attacking me at the beach, then he had calmed down and was fine all afternoon and he’s been fine so far today so I’ve not emailed. Plus it’s the weekend and pretty pointless.

I told her they needed to take him away so I could have a break, told her medication was poisoning him, it’s made him have a personality transplant, all sorts. 😳🤣

I just snapped and phoned them as I’ve had enough of being ds punch bag.

I don’t think it’s entirely (possibly not even) the medication, I don’t look back with rose tinted glasses, ds was quite the same before medication, he’s just older, I’ve been dealing with this years and years now and I’m tired of the same old shit.

Anyway. He’s been ok today.

I’ve had an eventful summer that’s for sure..

Good to hear from you danni but sorry things have been so hard. Have you trialed him off the meds? Does it make any difference? I would get in touch with CAMHS again, don’t wait until you’re in crisis.

Elizabeth I love autumn and usually ready for it after a decent summer which doesn’t seem to have happen this year…

Happened!

No I haven’t trialed him off, atomoxetine is taken every day, no time off. He’s not had any time off medication at all in the past 24 months.

Im not in crisis as such, it’s same old same old iyswim. Just typical ds doing typical ds stuff, just wish he’d take a day off, which he seems to have done today, thank god!

Danni sorry to hear that things are tough - not long to go now. I agree with Open do email CAMHS now (or ask your DH to). It can't hurt.

We had an Endocrinology appointment this week. DS is still tracking his line just below 0.4 centile. The consultant said - good job he's going to be small if he's getting more aggressive.

I need to write another formal complaint to the LA re missing the AR deadlines.

We are back from hols, lovely to go away but nice to be back to routine and my own bed! And help/intervention with the DC beyond just me and DH.

Danni that sounds awful. I’m not sure what else to add but from reading others comments on diff threads can he have a thorough EP assessment via school or if nec privately? This seems to be the bedrock of identifying reasons for behaviours and the right intervention. Right being the key word.

from what you say I wouldn’t say his behaviour is aligned to or solely to depression (the sertraline) or adhd (the atomoxetine). Are they the only two meds cahms offer? Or treat for? If those drugs aren’t working I would get him off them. No point if they are showing no benefits.

carrie speaking of meds, how is ds doing on the trial medication? Have you started to see any benefit yet?

Oh Open it’s been a disaster really. DS has tried various supplements before but just seems to get really over stimulated with them. This has been the same. The licence for it is only refractory epilepsy which he doesn’t have. The dr said though it could have other benefits re speech.

at it’s lower doses it was ok. At its higher doses it just seemed to increase hyperactivity, unsettledness etc. it obviously plays with the brain to succeed in halting epilepsy where meds can’t. It also completely reduced his appetite.

we have a consult in Sep so will discuss with the dr again. I have relatives who think I’m mad for even trying as if it was that simple the entire non verbal population would be on it…I did wonder if all these weird vocals were part of it.

Because DS doesn’t on the face of it appear obviously severely affected by any condition I still feel re speech I’m missing something. That I could be doing something or something more. I don’t know if that’s right. Most nv people I see around have very obvious levels of impairment, DS doesn’t ‘look’ like that. Equally I see lots of people who do have quite obvious issues who are still still talking at a level, iyswim. With DS people still talk to him in the street and so on and look amazed that he doesn’t respond.

At his age I mean. Obviously it’s very common for younger DC not to speak.

Well he’s very hyperactive and impulsive isn’t he? So definitely something going on other than dyspraxia of speech (if that’s the right term).

yes I don’t mean there isn’t, but not enough to render him completely nv iyswim.

Even then when I say he’s hyperactive or impulsive I read about posters on here saying the same and therefore they need a Sen buggy or can’t go out and I think right, ok, maybe he’s not then. For eg we frequently walk into our local town and he will walk next to me not holding hands save for where I insist by the main road.

what he won’t do at home is sit and occupy himself even with something like a screen .

Carrie the adhd medication is working to a degree though, hard for me to explain. But I’m going to try anyway! 🤣

Medication is only a tool, it doesn’t make any child behave, it’s there to support them to learn to behave, and it’s the behaviour I put him on it for primarily. Thought it would solve it all, it hasn’t.

The behaviour is the thing we haven’t yet managed, but it’s helpful with other things, ds has taken medication for 2 years now, in this time he’s made lots of progress in many areas, (just not the behaviour)

If I think of him before medication, yes he made progress in all the areas (again, just not with the behaviour) but the progress he made in the other areas is not as quick as when he’s on the medication, no way near as quick anyway,

so during the past 2 years of being medicated, he’s come out of night time nappies age 9, (in may of this year) hasn’t wet the bed once. (Genuinely not one accident overnight in 4 months) he’s been out of nappies in the day since age 5, but we had years and years of accidents in the day, he’s now independently (for about the last 6-9 months) saying ‘I need a wee’ I only remind him now before the taxi as part of his routine, and before bed, but all day he tells me himself, I don’t need to tell him at all, prior to medicine for instance I had 3 years of trip training him, he would only stay dry if I took him myself every hour, so not independently trained, just knew to hold on for me to take him, if i didn’t take him then he’d wet his pants.

He’s riding his bike with no stabilisers, he’s perfect riding his bike, knows when to break, turn, control it. For years before it was disastrous, we put it away in the shed and didn’t bother for ages as he couldn’t grasp it.

He’s dressing himself, I get the clothes, lay them out, he undresses and dresses himself, he needs lots of prompting and reminders but I don’t dress him anymore, prior to medicine he couldn’t fathom it out.

Loads more…

So I don’t want to take him off medicine as such, as I do think it helps with certain things,

I just need him to learn to behave 🤣🤣

carrie ds doesn’t use a special needs buggy, he’s a fucking nightmare out the house, I wouldn’t get him in one. He’s too tall for one now anyway, I’d have to get a wheelchair, which me and his dad have spoken about.

I’ve never seen a child so badly behaved when we leave the house. To this day, on my life. I’ve never seen another child behaving how ds does, yet it’s every time I leave the house with him, I always say to dh, kids like ds exist, they have too, I’m just certain their parents aren’t stupid enough to take them out and perhaps why we have never seen any child behaving even similarly.

He looks completely normal, So to the passer by they just think he’s a spoilt little bastard. (Sorry saying it as it is) It’s of course much more than that, and anyone who sees ds for more than a glance know that too. We get so much judgment now. I don’t even want to go out my front door, but I can’t live like that. Prisoner in my own home, plus it’s no good for ds, he needs exercise and fresh air too. It’s a basic human right.

Taken him for an iced coffee this morning with my dad, 15 min walk to the cafe, calling everyone mother fuckers, telling anyone who looks over the age of 50 ish they are close to getting an RIP headstone, spitting at dogs, got some ice cubes out his iced latte cup and starting throwing them at a passing pushchair, went to heron for a bottle of milk, got my dad to hold his hand at the door while I dashed for the milk, he’s done a grab and run with 6 bars of galaxy that my dads had to take back in, once I came out to relieve my dad, then we had him kicking and hitting the 15 minutes home as my dad took the galaxy off him. Punching cars, slapping himself in the face, took his trainers off and threw them at my dad, had to get him home in socks as he won’t let us get shoes back on etc etc.

REASON WHY I NEED BOTOX AT 34! 😂😂😂

He’s completely utterly feral. Deffo 2-1 job out the house, I don’t take him out alone now, could never manage, we struggle with 2 adults. Sometimes my dad comes with his partner and my dh comes and the 4 of us are frazzled. 😩🤣 My mum just refuses to go out with him now. She only comes to the house. She says she has PTSD from our outings! 🤣

This is what I mean about his behaviour, it’s SO stressful and SO relentless. Medication does shit for that sort of thing. LOL

My brothers wedding was 2 weeks ago, ds was a page boy. I said at the time they asked, are you sure???? They know how he behaves. I spent the full year leading up to it stressing, and the reason I stressed was for good reason.

They had 130 guests and ds showed me up like never before. My brother asked us to leave. 🤣🤣🤣

During the ceremony the registrar stopped 4 times because of ds, she kept asking my SIL to let her know when to restart, I couldn’t take ds out myself in front of all of those people as world war 3 would of ensued. I wouldn’t have got him from the front, down the aisle, out of the building without the kick off from hell, so I had to ride it out to not bring any more attention than he was already bringing.

My two sisters had an argument with some of my sister in laws side of the family as they caught them stood slagging my ds off outside,

My side of the family where all sound about it, they obviously know ds. I’m now not speaking to my sister in law.

It wasn’t even that ds was anxious, he was really looking forwards to it, he called it the family disco and was talking about it for weeks, he just behaves a certain way and it’s not how society expects a child to behave. This is where all the judgment comes from.

I’ll never go to another wedding as long as I live. I’m glad I got married before ds was born. Lol

danni lots of good progress with the meds then, I can understand why you want to keep him on it.

The behaviour sounds exhausting though! Have you thought more about trying to get some respite hours?

Omg @danni0509 relentless doesn’t even cover it… sounds beyond stressful. And the wedding too, really crap. Hang in there , nearly term time. You sound upbeat but it sounds incredibly hard. We have big challenges too but for now the physical side of things is manageable with DD being younger and fairly small. Glad you’ve seen some improvement with medication though.

Danni are you sure the improvements are linked to meds? I wouldn’t have thought adhd meds would help with things like toileting etc??

i had forgotten about the wedding, I hope you are joking when you said your brother asked you to leave?! They shouldn’t have asked DS to be page boy if they had any issues or at least left it to your discretion as to what you thought best.

Do you feel DS behaviour can be improved and if so how? You know him inside out. Do you think it would come from different meds or different therapies, I do feel as parents we have that hunch. Or maybe both? I would push for the EP via school and push CAHmS too. I understand your reservations about respite that you have voiced before. I’m sorry if this is a daft statement but what do you do in circs like today, so if you are en route for an ice cream and DS is carrying on like this… would you tell him ok, that means no ice cream and return home? I appreciate that would be major kick off but he’s bright, would he link the behaviour and the consequence? Maybe not this time but if it kept happening that he didn’t get what he was wanting? Would that have any effect? I’m not saying it would but if it was DS I’d feel it was worth a try…