Panicking about possibly having to test autistic twins- any ideas?

[SinkGirl]

DH and I have just ordered home testing kits for us - we are pretty sure what we have is just a cold but yesterday I had awful fever symptoms and couldn’t keep my eyes open I felt so ill, and DH has a slight cough. I think it’s very unlikely to be COVID but want to be responsible.

Our twins (4YO) have no symptoms yet - they have runny noses but that’s par for the course now they’ve been back at nursery. No high temps or anything else suspect.

However, if they do show symptoms I have no idea how we would test them. They panic with me taking their temperature by any means - one had a procedure under GA a while ago to remove things he’d put in his ears as no one could do it while he was awake, and they had to sedate him just to be able to take him blood pressure and temperature.

There is no physical way I or anyone else could swab them. They are non verbal and don’t understand words so I can’t explain it to them, they don’t understand social stories either yet.

If we physically cannot test and they show symptoms can we just isolate them for 14 days from when symptoms start? Has anyone been in this situation? What did you do?

[SinkGirl]

I’m sure their school would totally understand, it’s more the twins I’m worried about - they’ve done really well on their few sessions and it will be so confusing for them to be there for a bit and then off for weeks etc if that happens, so want to minimise it as much as possible. If it can just be a nasal swab I definitely think we could get that done without too much horror as it would be quick.

DT2 has to have his blood sugar tested regularly and has since he was a newborn - doesn’t even flinch. But come near him with a thermometer or a hairbrush and he thinks you’re trying to murder him, it seems. I am so hopeful that they will start to understand more as it would make things like this so much easier on them.

[sunflowershine]

I have tested my daughter who is 4 and has autism twice. It's not particularly pleasant but we've always gone to a test centre (so she's strapped in her car seat, which makes it easier!) and done just the nose swabs. She does object, and we need to gently hold her hands to stop her whacking us but it's over in seconds. Chocolate buttons and a cuddle afterwards and she's fine.

She will however also wear a mask without complaint, so perhaps she's not as sensitive to these things as other children with ASD.

[SinkGirl]

That’s good that she will wear a mask and that you’ve managed to get the testing done without too much upset

My twins won’t wear masks (or hats, gloves, even DT2’s glasses) - it’s not a sensory thing they just don’t understand what they are for and will rip them off immediately.

[sunflowershine]

That's the thing isn't it @SinkGirl, what works for one child with ASD just won't work for others. DD is also extremely logical (even at four!) so we were careful to explain beforehand exactly what would happen, and why (in a child friendly way because I didn't want to frighten her) and once she understood that she needed to have a 'tickle up the nose' to make sure she didn't have any of the germs she was ok with it. Still needed a bit of gentle restraint, I suppose it's natural not to want a swab stuck up your nose, but it wasn't too bad. She definitely wasn't traumatised, as I say a bag of buttons later and she was fine.

I wish you luck it must be damn hard work especially with twins!

Being in the car seat definitely helps, mean as it sounds they can't move as much!

[ForeverRedSkinhead]

I think you've made the right decision op. My son is 3 with speech and language delay , he's beginning to understand language and instructions after therapy but struggles still. I've already decided that I won't test him for covid if he has symptoms , we'll isolate instead. I decided this after seeing my really sensible 13yo struggle with the throat and nose swab , she nearly threw up when she was doing it.

I hope they feel better soon @SinkGirl

[OpheliasCrayon]

@SinkGirl

I’m sure their school would totally understand, it’s more the twins I’m worried about - they’ve done really well on their few sessions and it will be so confusing for them to be there for a bit and then off for weeks etc if that happens, so want to minimise it as much as possible. If it can just be a nasal swab I definitely think we could get that done without too much horror as it would be quick.

DT2 has to have his blood sugar tested regularly and has since he was a newborn - doesn’t even flinch. But come near him with a thermometer or a hairbrush and he thinks you’re trying to murder him, it seems. I am so hopeful that they will start to understand more as it would make things like this so much easier on them.

I understand that you want them to be in school so that they can settle . Obviously it is best that they're there for continuity. They seem like they've done really well settling in so far with their visits - that's great.

It seems like you may be able to try to test them with some tips from others here so I hope you can manage it.

If you think you're going to run into problems and they may have to be off (might not be for as long now if they reduce it to 7 days though!) Have a chat with their teacher. It might be that they can provide you with some resources to have to do with them at home. I understand they can't use social stories yet but you could ask for some pictures of their teachers and support staff, their classroom, toilets, where they play etc, so that you can still talk to them and remind them visually about school even if they're not there. Maybe ask for the usual transition resources that they use to have as a back up at home for if you are needing to stay off. Anything that can remind them of the people and the structure of the school routine would still be useful for you to talk through with them daily, so when they do go back, it's been in the forefront of their minds at home as well.

[FrostedMittens]

I have had to test my autistic 4 year old 3 times now. We cannot afford to isolate for 14 days just in case it might be.

He has to be physically held down while I put the swab up his nose. We don't even bother trying in the mouth.

Its not ideal but its a must for us so we can afford to live. All tests have come back negative too.

[BlackeyedSusan]

for eye drops, ds was wrapped in a towel, and clamped between my knees. you will need someone to keep head still. this was because he needed these to ensure no damage to his eyes. Not sure I would do that for anything that was less serious.

Alternatively, middle of the night, when they are deep asleep. They will wake but less likely to remember in the morning.

[SinkGirl]

That sounds really stressful Frosted. We are definitely lucky that we work from home (although working and our twins don’t really make a good combo to say the least, at least it’s an option). I’m glad they’ve all been negative so far - hope it stays that way and you don’t need to keep going through this

[Forgetmenot157]

It seems pointless.. The throat swab you have to do without touching their tounge, teeth, gums etc.. It will be impossible with children especially autistic ones.. And the nose swab has to go up quite far, again impossible with sen children

[DownWhichOfLate]

No advice, but I recognise your username and wanted to say well done on getting them in to a special school. I hope you are getting more sleep / rest as well!

[SinkGirl]

@DownWhichOfLate Thank you! The LA fought us all the way but finally backed down halfway through day two of the hearings. Most stressful year of my life but the way they’re settling in and having such a good experience shows it was worth it.

We’ve now got specialist safe beds on loan from a charity and our permanent ones from social care due any time now. They’ve made so much difference as we know they are safe even when awake. Still looking for specialist sleepwear that DT2 can’t escape but otherwise things are coming together :)

[DownWhichOfLate]

Ah, fantastic! I didn’t want to ask any further details as it’s none of my business, but very glad to hear about the beds . I’m sure you’ll be even more keen on seeing the end of 2020 than the rest of us!

[SinkGirl]

No, it’s lovely that you remember our ongoing saga! It has definitely been a tough year but much more so for many others than for us, and I feel like we are getting into a much better place - I’m sure we’ll all be glad to say goodbye to 2020 though!