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

carrie I normally would but can’t when I have a cough. People are naturally more worried post covid.

Ahna we haven’t been to a wedding with ds for years but the last one we went to dh just took ds outside for walks regularly (it was my family). Best to have a plan with dh for what you can do when she needs a break.

Oh sorry Open yes I forgot that bit! At least it’s brighter today (here anyway.) hope your cold is on the way out.

Hard to introduce myself properly with DD shouting at me for chocolate for the third hour running, but place marking for when I have time to come in.

@carriebradshawwithlessshoes @openupmyeagereyes family probably limited help - the one helpful ones are very core to the wedding party. It’s a very long day too but luckily we have accommodation on site. DH isn’t huge on big events so indeed he will be happy enough to dip in and out. I just think the whole weekend will be very intense but that’s weddings isn’t it!

Good luck with the wedding Ahna. Good that you are staying at the venue. Last time I took DS to a wedding he was 2.5. It was my sister's and there were a few tricky moments but I was glad of an excuse to duck out of some of the speeches (the best man's was 40 mins long!)

It was dry here today for the first day in ages so we walked up a big hill - DS definitely needed this. We're all pretty tired now

@carriebradshawwithlessshoes I understand about hoping to be ‘under the radar’ in public without loads of looks and stares but it not turning out that way. I don’t know if it helps but I’ve had similar, DS used to scream a fair amount but that abated. He’s also now got language so no longer nv, but he doesn’t like talking and hates other people talking, and now has developed really loud throaty/cough type tourettes and jerky body movements also.

So poor guy he now gets more negative attention than when he was younger. At the moment he is oblivious to it, but one day he will realise. To be fair most people are pretty respectful, the sounds DS makes are unusual and dont’ sound like normal coughs, but a very loud unusual sound and he gets bouts where he does it frequently and I just feel sad for him. It’s like a very obvious sign that he has struggles that others don’t. And of course because it’s tics I don’t bring attention to it, and he cant’ help it. But they make it really hard for him to even focus on anything, and they are very uncomfortable for him. Sometimes people make fun or have even had adults make horrible comments. We take a lot of public transport which is very hard.

@Ahna65 oh yes a wedding! Honestly I’ve tried to leave DS at home and go alone, I don’t think I’ve done anything with DP for a long time. But at a funeral last year me and DP just tag teamed and DS nearly ended up in the hole… bit of a story!

@AutumnNymph recently DS has just refused a trip and I think I’ve just had to use every trick in the book, and been very ‘careful’ around DS - definately not a head on thing, using my instincts I guess and just being sensitive to him, trying to detective wise work out what the problem is, and if I can’t just gently being insistent that it is happening but not being in DSs face about it. I tried to work out the first dates and leave the times of flights/where we are going to say casually around on paper so DS coudl see what exactly was happening when. Good luck!

How is everyone doing?

We’ve had a more quiet week, swimming, woods, garden centre. Ds is still waking early and he’s now gone off McD’s chicken nuggets because they ‘taste funny’ which I’m very disappointed about. Tomorrow we’re meeting up with friends and IL’s are visiting on Sunday.

I’m enjoying the better weather 😎

yes @openupmyeagereyes with you on the sun!! Finally…

We had an ok flight experience today. Queues at airport were bad with DD, she had quite a few short meltdowns but was ok with a screen for the (short) flight. Wedding tmro but some pretty hectic group family stuff today and she’s done really well. Lots of running around and repetitive running but enough people on hand to keep an eye. I’m hoping it is a bit of an ease in to wedding day tomorrow but let’s see. I’m also expecting plenty of breaks for screen time.

wishing everyone a restful and sunny weekend :-)

We're off on our hols to Scotland tomorrow. Not looking forward tonthe drive 4-4.5 hours and thunderstorms are forecast. I am exhausted- worrying about the children has been giving me sleepless nights.

On Wednesday at the park DS fell from about 8 feet. He had just asked me to help him climb down and I was walking towards him when he fell. Watching him fall but not being able to save him was just dreadful. Amazingly, he only has one small bruise but obviously I was keeping a v close eye on him afterwards. Then yesterday we had sunshine and so I got the paddling pool out. DS kept shoving DD. I gave him a final warning and he then shoved her head under water holding her head down with both hands. I was sitting a few metres away. DS ignored my shouts and I had to drag him off her. A moment before I was thinking of going into the garage (which is also within a few metres of the pool) to get some tools out. I am so relieved that I didn't go into the garage, I dread to think what would have happened. Although when I told my Mum what had happened she thought DS would not have done it had I not been there. Although I will not put that to the test. Sometimes I think that I really bring out the worst in him. Today was also pretty tricky but less dramatic.

Oh @dimples76 no wonder you’re exhausted from the worrying. What a stress for you. I know the adoption therapist went awol - would be so great if you could find an equivalent to really get to know his mind. I know you’ve tried.

I hope a change is as good as a rest for you. Are you going on your own or with your mum? Also near the border and it seems the forecast is improving slightly.

I’m so sorry dimples, that must have been so scary. It’s very stressful having to be so vigilant. I hope you have a good holiday.

Ahna the trip sounds good so far, I hope you enjoy the rest of the weekend.

In news here, ds slept until nearly 6:30 today! This is a very rare occurrence. Dh and I both awake before him of course, me wondering if he’s ok

Thanks Open and Ahna. Hope that you're enjoying your hols Ahna. It rained all the drive here but we arrived in glorious sunshine and the holiday cottage is great. My Mum is here and determined to give me a rest.

Ahna unfortunately the Adoption Support Fund people asked for further information from the therapists which apparently restarts the clock on the application - this means that funding probably won't be in place until the New Year.

Although since I typed the last message DS has repeatedly threatened to push Granny and me in sea and pushed DD over. So I don't think that Granny is feeling so enthusiastic

I hope he settles down dimples.

Ahna how did the wedding go?

@openupmyeagereyes overall went ok. DD up since 0230 today tho w huge meltdowns but prob not a surprise. She finally slept at 10 in the car. Was an intense day and I hope the last wedding we have to do w small children!!

Well done Ahna '- you must be relieved that the wedding is over. DS is much happier today- played on the seashore for ages, the sound of the waves, scooping sand and pouring water = sensory heaven for DS. When we got back in about an hour ago he said he was tired and after a shower and change of clothes he is in bed with his ipad. So my Mum, DD and I are all chilling out watching Bluey (well Mum is asleep) and everyone is in a great mood. Fingers crossed ....

We made it to India! The PP who suggested we try a pull method, thank you!.it worked, my brilliant bro in law (also fav uncle) arranged for her to attend a talk in an area of her special interest at the uni he teaches at, the flight was a bit difficult for her but she.coped brilliantly.and was very happy to have come once we landed. She is tired and a.right grump today but thats expected and am.just glad we made it. We have plans.with her tomorrow to go out to places she likes.

AutumnNymph that’s great! I hope you have a fab trip. Well
done to your dd

dimples I hope ds is more chilled out now.

We had plans to go to a NT place today but ds refused so we went to some local woods instead. We’ve had a play date that went well this week and a meeting at a local paddling pool with a friend that ds didn’t speak to much

Sleep has been better the last few days (after 5 at least!) so hoping that continues.

AutumnNymph that's great news. Have a wonderful time with your family.

Open hope that the sleeping continues to go well. DS had a good day - the weather has been kind to us so we were mostly at the beach.

I am getting fed up with some dog owners though who just let their dogs wander off. DS does not follow any instructions re dogs and runs up to dogs he doesn't know with me in hot pursuit telling him to come back - so many of the owners just say 'they're fine' (in a calm down you over protective mama manner). I tend to say I am trying to teach him to ask permission before he touches someone else's dog. I am inclined to go with - 'they might be fine but DS is not. Would you like him to kick your dog?' DS has never been aggressive towards a stranger's dog but he has to family dogs. He is currently banned from touching them and my stepmother won't look after DS after he tried to push her dog down the stairs.

Back home from our hols today and feeling blue and tired after a long drive with DS attacking DD.

Overall, we had a great holiday. Yes, there were challenges for DS but everything was fairly low demand for him. We were lucky with the weather and spent most of our time at 2 beaches (5 and 10 mins walk from the house). DS even tried all sorts of seafood. I wish I hadn't as I was up half the night vomiting. I was sharing a room with both kids and woke them up running to the bathroom. DS stroked my back whilst I was vomiting which is v unusual for him. Nice to see a caring side coming out.

@dimples76 glad your hols went well. Its so lovely when the caring side shows up. Well done to your DS.

Our hols are going well too..I can see DD is overwhelmed.with people and noise but is getting so much better at walking away to her room.when.she needs a.break. She is quieter.than she normally is.and has confessed to being very stressed at the idea of starting senior school in Sep. We have kept everything low demand.fot her, she spends a lot of time gaming but as it helps her cope, we are leaving her to it..

Well done @dimples76 sounds like a success, sorry some of it was spent sick for you. Food poisoning / allergy? So lovely re caring DS.

Try not to let the bad journey leave you too blue. you’ve done great!

Thanks

That's great news AutumnNymph.

Ahna how are things with you?

DS is on an rollercoasters today - lost count of the mood swings. Always had adjusting after a holiday.

Currently laying on an inflatable on the balcony in palma hotel, DS shattered and having a nap!

so far so good after a shocking few days before. Noticed DS was doing this weird jerking and started panicking he was having fits. Spent 2 days in and out of hospital, the drs saw my recordings and said he wasn’t. Said it was benign mycloenic jerks? (Sp). But honest to god I thought we weren’t going to be here. I also am seriously thinking I need to get some professional help for me re his epilepsy I’m a nervous wreck.

weather scorching, kids spending all time on the beach or in pool. Not sure if it’s that or the food but dS seems to have a constant runny tummy which I could do without tbh. He’s drinking sea water by the gallon though. Aside from all that it’s lovely and nice to be away, tho I do find I’m constantly on edge with DS. He tried to climb on/ push a woman on an inflatable in the sea yesterday, nightmare. DD is such a young lady now it makes me think how easy it would be with just her (not said in a nasty way to DS hopefully you know what I mean.) DS still needs watching like a hawk.