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 guess the one thing I’d say is don’t worry, my DS wasn’t fully toilet trained until 7 years old and he wasn’t really ready for it until 6 years old - I had to do it over several months as neither pictures or prompts worked. It’s just something that everyone expects to happen when younger but I think the majority of ‘significantly’ autistic kids are not ready for several years.

@Ahna65 @carriebradshawwithlessshoes I agree, DS had and still has very little motivation for speech. I did have to push/bribe gently speech at times, and then also make sure there were very motivating reasons for speech. He loved numbers for example, and would say ‘red 9… blue 5’ which he liked better than ‘blue dog’ or whatever.

@Ahna65 i didn’t reply re the aac. From my experience and understanding, it’s really just about finding the appropriate content for a tablet. We use ‘Go talk now’ I’m not sure if that can be adapted but you can have a dabble with various pages for free (I’m assuming you are using Dutch? Is that your language used at home?). Our first experience was a programme set up by the SALT which imo took Bill Gates to be able to navigate. So lots of folders, subfolders, subfolders of subfolders etc. I thought there’s not a cat in hells chance of DS using this! We now have reverted to 6 key phrases on one screen and yes/ no on the next which we use for general chat. Obviously though he responds to my closed questions.

What I would say tho is my view on aacs is that their success is based on the following;

1. the DCs cognition, even I was struggling with the first version, DS would not have ‘got’ it. It had a help function if you typed the word but DS couldn’t have done that for the reasons below
2. the DCs fine motor. DS was very late to point and eve now he often just randomly swipes the screen rather than a defined point. The icons certainly on the first screen were tiny, he couldn’t press accurately any one;
3. motivation! Out of about 10,000 bloody icons (or so it seemed!) DS was only really bothered about 2 of them! Which he could get or was given anyway not using the device!

Even now I’m not won over, some of the phrases are quite artificial and as said upthread he can get his needs met another way. The machine doesn’t lend itself to general open chat (or maybe DS just cannot/ does not use it in that way.) I feel and have always felt that I could coax more out of him in terms of communication if he had some language rather than an artificial device but when it comes to that we really are stuck between a rock and a hard place.

Thanks @carriebradshawwithlessshoes super helpful. Going to investigate! Yes, Dutch at home.

Ooo, again I’m impressed. I can’t tell you how many hours I’ve spent with friends with non English spouses (German and Italian) bemoaning ‘I’ve really tried to learn! It just doesn’t go in! I’m too old’ 🤣🤣.

In terms of our update, things are OK. As I’ve said before though DS doesn’t play and is just bored/ irritable in the house after so long, but being out every day all day is exhausting and on the days GP have him because I’m working they are too old to be out rampaging with him which is what he wants to do. We have had some nice days out (coast, walks, theme park) but it’s just imposs to do every day.

The other unwelcome thing that we are dealing with is the return of the vocals. The screaming stopped, thank the Lord, but has now been replaced with a host of noises which if I can use the words of a poster from years ago ‘induces the lemon sucking faces of the general public’ and is absolutely driving me insane at home. In fact he is currently never silent. Some of it is word like but a lot isn’t. The one thing I’ve maintained amidst the awfulness of having a nv child is that at least we can do normal things and live a normal life under the radar of people outside the house but if this continues that will be radically different which would absolutely break me. Surely with all of our kids we are supposed to be going forwards not backwards? That said the only positive is he tends not to do it when taken up with other things..another reason to do the days out/ noisy theme parks etc (but still exhausting.)

I don’t think he’s doing it for any reason other than he’s experimenting and likes the sound/ feel of it but it’s not good. I would love to say it’s a pre requisite to speaking but I feel that would be too optimistic. I can see poor DD looking at him in horror sometimes whilst he looks thoroughly pleased with himself.

We've had a quiet week but popped out today for a potter round town and lunch in our favourite cafe. Had a moment in the library when DS decided to spin and walk to the loo, and a woman said sarcastically to me, oh does he want to be a dancer or something, so I just smiled and said 'no he's just spinning' and walked calmly away. That type of comment used to really bother me but now I just think ignorance is someone else's problem, not ours.

Carrie I guess that it would be beneficial if you could look at it as your DS finding his voice! In terms of no longer going under the radar you will adapt to that too - if he's still enjoying the outings I would just keep them up. Before DS I would say that I tried to blend in and in general would not want to draw attention to myself. Since he came along I have had to accept that we are often likely to be the centre of attention (mostly for the wrong reasons). I have changed and now I don't really care what strangers think/look/say. As ElizabethBennett'sBoots said it is down to their ignorance/prejudice.

DS went to a SEN fun and food event run by a regional learning disabilities charity that I hadn't encountered before. It was 4 adults with 4 children and involved a mini bus outing (to adapted bikes & trikes). He loved it but was wiped out by if - slept for an hour. He is going to another of the sessions at the end of the month.

Jabberwocky any news from case worker? Still chasing DS's to no avail.

But aren’t things supposed to get better Dimples, not worse? If I’d had this from DS being tiny fair enough but to kick off at 8 when I’m desperately hoping for improvement is awful!

carrie the screaming stopped so maybe this will too. I don’t think progress is always linear and sometimes old issues are simply replaced with new ones. Hopefully longer term this will be a step towards speaking.

When are you off on hols?

Elizabeth glad you’re having a nice week.

dimples glad ds is enjoying the event.

We had a play date this week, went to an outdoor event and to the toy shop but I’ve got a cold now so will probably have to stay home for a few days.

Carrie my DS's behaviour has become much more challenging this year. He has become more violent but he is also more in touch with his feelings and better able to talk about them. When he calms down now he is more able to reflect on what happened- we haven't yet been able to use this better understanding to improve behaviour but I think that it should in time ..... So, I agree with Open progress is not always linear.

Open hope that you feel better soon.

@dimples76 i think you’re doing so well with all the activities (I have always, since baby days, found activities and classes etc exhausting) and it sounds like so far really going well!!

@carriebradshawwithlessshoes open makes a good point that the screaming stopped. I am terrible for thinking things are just going downhill and sometimes I need reminding (usually by physical, factual things like an old message or email) that we have made progress in some areas. Not saying you’re the same in your head but do you have anything you can read back to see how you’ve come ?

its 9pm here and DD is asleep - very unusual and
probably not good for the night but for now, big glass of red in hand. Cheers to all of you wonderful mothers x

he is also more in touch with his feelings and better able to talk about them. When he calms down now he is more able to reflect on what happened

Same here dimples.

Ahna wishing you a good night!

Thank you all, I appreciate your support, as always.

White Rioja here but joining you in spirit Ahna. Fingers crossed for a quiet night. Both kids bouncing off the walls currently but I live in hope… x

Palma 2 weeks today

My 2 are asleep and I have a large glass of pinot noir. Off work again til Tuesday.

Ahna I find doing classes/structured things some of the time a form of downtime. Otherwise it's on me 24/7 to direct activities.

@carriebradshawwithlessshoes DS definitely goes up and down depending on various things. We had a few tricky days transitioning from school to holidays mode, for example. Lots of disregulation.
We are chilling out with Mario cart today and maybe garden tennis. It's DS' party tomorrow as we are on holiday for his actual birthday. I've got family coming over early afternoon then a soft play for friends later on...eek!! And dominos as a treat tonight!

Just less than 2 weeks until we go away hopefully!
@danni0509 how's your summer going?

Hello wise fellow Mums! I have been lurking but not posting as summer has been tough so far. My almost 12 year old DD has ASD with PDA and ODD with emotional disregulation and potential ADHD. She is under the care of CAHMS and Is on medication. She starts secondary school in Sept , same school and site just different buildings and the school have been fantastic at supporting. However the angry outbursts seem to be increasing
We are on wait list for counselling.

Now rhe latest, we are due to fly to India in a week, we have gone twice a year all her life and she loves it. All her grandparents, cousins etc are there. But now anxiety has hit and she is flat out refusing to come. We are due to fly next Saturday and am inwardly panicking. We don't have any family support here and I was really looking forward ro a break. Any sage advise on how I can reassure her/convince her/bribe her? Sorry for the long moan/rant, am exhausted

AutumnNymph that sounds very challenging. My sister is really struggling to get DN11 out of the house this Summer so no real answers about strategies there. What do you think she would actually happen on the day? Would she refuse to get in the car/taxi? I tend to make a holiday planner/countdown for DS so he has a visual reminder that the holiday is temporary. He generally gets a lot out of being on hols but is clearly, generally holding a lot of anxiety in as when we return home his behaviour is often v challenging.

@dimples76 yes on the day she would refuse to do anything and get herself into a violent state of meltdown. Most likely hit me, throw things around etc. We have had to call the emergency services a few times to help her as she just spirals out of control. We have a holiday calendar and normally she loves going to India. Infact this trip was her idea as she wanted to spend her birthday there. This refusal is out of the blue.

Just like your son her behaviour is challenging the first few days either side of the trip. However she is very comfortable at my parents house where she has her own room set aside which is her safe space and has a few friends as well.

@AutumnNymph gosh that sounds tough… thinking through, if she has close relationships with your family in India would it help for them to be chatting with her on the run up, would she do some Zooms, lots of family chat about how much they are looking forward to seeing her, perhaps things they have planned/ intend to do that she will like? Lay it on thick?!?! Can they do the pulling rather than you doing the pushing??

AutumnNymph has she said what aspect of the holiday she is struggling with when anticipating it?

We’ve had a quiet few days with me coughing. Plus it has just rained most of the time. It’s looking brighter this morning.

Ds up at 3am today. I’m doing the second shift with dh back in bed. We seem to get at least one of these a week. I need to get him outside today, he doesn’t like going out when it’s wet and I don’t think that helps. That and too much screen time, it’s a vicious circle.

@openupmyeagereyes aah. Solidarity. DD just gone back down after being up since 2. For us I really don’t see a link with outside time tho as much as that sounds perfectly logical. Wishing you a restful day, loads of rain here. MIL has offered to have DDs for a night this week but I’m a bit hesitant if things are still so extreme w sleep and meltdowns, not sure i would relax

Fam wedding in UK coming weekend which I’m really dreading tbh.

Open I’m with you there, DS absolutely needs to get out and the weather has been terrible! Completely stuck indoors. Can you go swimming, that’s usually my fail safe for wet days and tiring out.

good luck Ahna, when is it? Are you in a hotel? Will family be there to help if needs be? At our recent one for eg my cousin said at one point she would go back to her room for a bit (it was all in a hotel and we were staying), she took DS who rampaged on the bed watching tv, they are long days so think my cousin was actually happy to go and make a coffee then come back. Lots of walking around the extensive grounds with people. Tbf they aren’t easy days with any young kids!