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My son is struggling :-(
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SpideyMom · 08/05/2020 13:21

It's breaking my heart.

He is 5 with suspected autism. He is becoming very emotional and anxious at things touching him. As fine as he appears he is obsessively washing his hands. Every few minutes! though I am trying my hardest to stop this but its causing him alot of upset. Anything he touches he then goes to wash his hands. Anything that touches him he goes into a meltdown saying he hates it. He has also started over tightening the taps to the point in need to get them replaced.

I'm not long out the shower and my foot touched him slightly. This sparked a massive crying fit how he doesnt like me for making him dirty. The other night his foot touched a cushion and he touched it. He was fast to go to wash his hands and I asked him to not. He was so upset that he had to as his foot has touched the cushion.

I am trying my best to reassure him but nothing is working. I want to blame myself but at no point have I told him to wash his hands like this. Ive never had to tell him really. He just knows when to but this is extreme.

He has also started to blink repeatedly for alot of the day and is communicating to people by hissing and when I correct him he says he is a cat. He is not a rude boy but the hissing when spoken to comes across rude and he has never done this in response to people before.

He seems to be struggling more by the day.

Sad

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JiltedJohnsJulie · 08/05/2020 13:49

I'm so sorry he's struggling. When you say he had suspected ASD, has he been assessed yet?

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SpideyMom · 08/05/2020 14:57

He has been for his initial assessment where his paediatric psychologist said he would benefit from multi agency assessments. But that's where we are. It's taken ages to get any further but with lockdown nothing can be done.

But in lockdown he is struggling more by the day. On a whole he is happy but now I keep addressing his hand washing etc he is breaking down.

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JiltedJohnsJulie · 08/05/2020 15:07

Glad you've managed the initial assessment but sorry, I can't help with the hand washing.

Perhaps if you ask @MNHQ to move this over to the SN section you might get a few replies from MNers with experience Thanks

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SpideyMom · 08/05/2020 15:07

Thank you

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JiltedJohnsJulie · 08/05/2020 15:10

Oh and it might be worth seeing if there is a local ASD support group. My DF has a son with ASD I think she has received some useful information and support from hers over the years Smile

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Iwishicouldhelp · 08/05/2020 15:17

Bless him that does sound like a lot to deal with.
I am by no means an expert so just speaking from what I've researched it sounds like the handwashing could be OCD related and the blinking could be a tic.
My son had a similar tic in childhood and I have an aunt who suffers OCD in the form of handwashing and things touching her leading to the need to wash her hands etc. When it's at its worst her hands are red raw from the constant washing.
OCD and tics often go hand in hand.
I'm afraid I don't have any helpful advice obviously like you said with lockdown in place it is impossible to get any further with referrals etc, I hope someone can give you some better advice.
And please don't blame yourself, these conditions (if that is what he has) are not down to anything you have done.

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Poppinjay · 08/05/2020 21:08

Is he open to CAMHS at the moment? If so, you need to call them and ask for him to be seen for this. If he isn't, you need to see your GP and ask for a referral to CAMHS.

In the meantime, your instincts to resist the handwashing are probably good. I have a DD with ASD some similar traits. We've been advised to resist the compulsive behaviour, otherwise it will just escalate. It seems that you can never wash your hands enough to feel OK and it's better to build evidence that nothing bad happens if you don't do it.

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SpideyMom · 08/05/2020 21:45

He isnt open to them yet no. Which is why I feel so lost as I dont feel I can call our GP when we are only just starting this journey.

I feel an awful Mom. He was first referred when he was 2. Over the next 18 months nothing happened. He had appointments sent but then get cancelled I eventually snapped and said enough is enough this isnt helping my child. I will support him myself. That was at a time I felt like I'd worked out how to handle his little ways.

That was my biggest regret as when he started school shortly after he turned 4, Everything surfaced again and much more. In reception school just kept fobbing me off despite his paediatric psychologist having contacted them. It has been since year 1 started where bigger struggles have arisen and I felt it was best to get him back on the route. He was due his appointment the following Friday after the schools were closed so when I received his letter to say it had been cancelled I was upset.

But this is just awful. It's only his hands though. I have a battle to get him bathed. Half an hour of distressed screaming yet he needs to constantly have clean hands. He has even started lying to me about it when I ask him to not do it. And the raise my voice because I am not happy about him lying to me, he protests his case that he cant have dirty hands.

I'm finding things so hard

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KatyB222 · 09/05/2020 10:58

How long has he reacted to being dirty? Is it worse since covid? I wonder if he's misunderstood when he needs to wash his hands? Children with asc tend to react well to visual rather than verbal info. If it's got worse since covid, I'd try explaining it again first and see if it makes a difference.

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SpideyMom · 09/05/2020 12:00

To be honest he has never been a child who likes to get stuck in and get dirty. He hates grass, mud, snow. The one year when he was much younger it snowed really bad. He asked to go out, he touched it with his finger and said 'no more, go in'. He will not walk over grass or any part of the ground that looks like mud. Even when its dried and unlikely to transfer onto his shoes he panics. So we always have to walk around these bits.

I noticed his hand washing increased when he started nursery. Didn't think too much of it as I thought its what they do, encourage hand hygiene. But it has never been this bad. His washed his hands 20 times this morning already and all he has done is sat and watched the telly.

I've decided to stay calm when trying to stop him and I ask him why is he doing it and he will just say he doesnt know.
Last night we read some stories in bed. I then asked him if his worried about anything and he said dirt and germs. We then discussed scenarios where he should be definitely washing his hands. He then started saying and when I pick up my toys, play the computer, get dressed. I calmly said our house is clean and you see that Mommy keeps it clean dont you. You really do not need to he washing your hand for these reasons. He then said so they have good germs? I said doing these things will not be harmful to your hands or you. But today his woken up hand washing like mad.

It's most definitely become worse since lockdown. Before I was aware he was anti getting dirty but it was never constantly in my face. This is bad and I just worry about his hands becoming sore as he will not use any sort of cream on them

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Poppinjay · 09/05/2020 14:15

I just worry about his hands becoming sore as he will not use any sort of cream on them

You can buy emollients that are designed to be used as soap. This is a link to one we used for years for DD1 who had eczema on her hands.

www.expresschemist.co.uk/product_8200_dermol-500-lotion-500ml.html#.Xrasa6hKg2w

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SpideyMom · 09/05/2020 14:40

Oh brilliant thank you. Ever since he has been born he wont ever allow me to put cream on him without a battle. Getting suncream on him is awful and always quite an embarrassing upsetting experience. He must appear so naughty but there is no way his reaction is out of naughtiness.

I will have a look at this, thank you

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Poppinjay · 09/05/2020 15:47

He must appear so naughty but there is no way his reaction is out of naughtiness.

I've had to get over being bothered that people will think my DDs were naughty or that I was a pushover parent. People will judge you because they can't see the subtleties that differentiate distress from tantrums. Venting to other parents in a similar position helps.

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SpideyMom · 09/05/2020 16:35

It just frustrates me. My parents will agree he is struggling on one hand but then on the other my mom will turn around and say you're going to have so much trouble when his older with how stubborn he is and not doing as his told. To a degree I couldn't care less what other people think, but it's hard when I dont really have the support of my parents. They push everything aside as he doesnt look like he has these struggles so to them 'his just playing up for me'. I know that must sound awful so I hope it's taken how it was meant

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ZooKeeper19 · 10/05/2020 14:18

I have no experience with ASD children or similar, but a few things come to my mind.

Could you maybe buy a book/find something online (age appropriate) about germs, safety, cleaning, and most importantly about immunity? Let him know, that germs can be good and that they help us to stay healthy. Best to show him with pictures, maybe videos. and I would do a lot of this.

As for the hand washing, maybe I would consider if he'd be willing to wear gloves, simple white cotton gloves. He can then see if they become dirty and can go and exchange them or wash his hands.

Sorry, nothing more comes to my mind. Hope he feels better soon, and you!

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SpideyMom · 10/05/2020 15:28

Thank you for your advice.

I've never been able to get gloves on him. Even when its snowing and freezing out.

We have discussed about some germs being good and will not hard him. We have alot of conversations about it to be honest and it feels like I'm getting through and his is getting and then the next day it all repeats. So I feel visual will probably be the better solution. Thank you

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KatyB222 · 10/05/2020 22:54

Sounds really tricky and you're doing a great job keeping calm for him.

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SpideyMom · 11/05/2020 09:47

Thank you. I dont know how it's going to work when he has to return to school. His running to the bathroom every few minutes. I've told him I will put a bottle of hand gel in his bag and asked if that will make him feel better and his face lit up. Not the thought of a toy, or sweets, but a bloody bottle of hand sanitizer made him feel happy. It made me really sad.

He is in the yr group that are potentially first to go back and its knocked me sick. To see how he has been affected so far is breaking my heart. He has convinced himself it's not safe to be outside the house. Putting him back in an environment that is so different from what he has known I feel will make him worse

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Poppinjay · 11/05/2020 22:12

Putting him back in an environment that is so different from what he has known I feel will make him worse

It might not.

At home he has the space and flexibility to constantly indulge his need to wash. He could find it impossible to maintain the handwashing at school and find out that nothing bad happens if he doesn't do it. He might compartmentalise and take a break at school, resuming when he gets home.

I'm not saying it will get better but I'm not sure it's a given that it will get worse.

Take it one step at a time and follow your instincts when responding to each development. You're doing well so far and you will probably make the right judgements.

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LizzieAnt · 14/05/2020 10:21

Hi OP, I don't know if I have much useful advice, but just wanted you to know you're not alone. My son has had similar issues, starting at about age 6. He was diagnosed with an ASD aged 8. However, the times that are most difficult for him are when his OCD-like behaviours flare up. We do find that they ebb and flow - stress doesn't help, but there seem to be other internal drivers too. Our difficulties have been: firstly, even getting a diagnosis of OCD when he already has ASD....as people with ASD can have lots of repetitive behaviours it can be difficult for an outsider to tell them apart, I think. However, I personally am convinced it's OCD in my DS's case due to the motivations behind his behaviours ( he's compelled to go through with a ritual because he's terrified that something bad will happen if he doesn't. He has other, more comforting, ASD type repetitive behaviours too though.) He gets support from ASD services here, but when the OCD flares they disappear and he's referred to CAMHS. So not an ideal situation, but hopefully there will he more support where you are.
If you can, I'd try to address it early on as, in my experience, it doesn't go away on its own. CBT is recommended as treatment, though would have to be modified for a child so young. My son didn't want to engage with CBT so that was difficult. SSRIs are also used to treat OCD...my DC was prescribed them aged 10 following a very bad flare-up and they have helped. I was very reluctant to put him on medication so young, but it did take the edge off. Just being there for him, understanding him, trying to have as much fun and relaxation as possible have all helped. Distraction helps, as long as he's not actively engaged in a ritual.
I'm sorry OP, this post doesn't seem very helpful, but just wanted you to know there are others who know what your DS and you are going through. Also, I want to encourage you to trust your instincts, push for a diagnosis, fight for his OCD to be recognised and treated. There are books available too on the subject, some aimed at young children. Good luck OP to you and your DS Flowers

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LizzieAnt · 14/05/2020 10:27

Try the books by Dawn Huebner...
'What to do when I worry too much' and 'What to do when my brain gets stuck' for children with anxiety and OCD respectively.

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SpideyMom · 14/05/2020 12:29

Thank you.

He really upset me yesterday. He broke down and I couldn't get words out of him and he wouldn't come near me. I eventually held him and he gave in and was sobbing. I asked him to talk to me and he cried that he is struggling. I asked how and he said with everything. He couldn't see me but I did cry as I felt so helpless.

The original doctor who referred him is calling me an Monday. I cant bare him feeling like this

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LizzieAnt · 14/05/2020 15:28

Oh SpideyMom, I'm so sorry you're both going through this. It can get better so believe that. It's good that he's opening up to you and letting you know how he feels even if it's upsetting. Glad the doctor is calling you soon. Let them know exactly what's happening and how much he's struggling. Thinking of you both.

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SpideyMom · 14/05/2020 18:01

@LizzieAnt may I ask if your son struggles with his learning? I am quite shocked at how bad it is. I'm massively worried to be totally honest. Since Reception I have always felt something isnt right. His reaction to homework has always told me he isnt getting it like he should. Various conversations with his teacher I felt like I was being fobbed off that his one of the youngest he will get there.
Year 1 has been worse, and his teacher hasnt been the most supportive. Again various conversations with his teacher and all I get is he cant listen and he cant sit still. Which bloody annoys me really after all the conversations I've had about him. He has lashed out at his peers when they are making fun of him not being able to do something.
Anyway lockdown learning has been horrendous in all honesty. I've hated it! We are repeating the same work and after 7/8 weeks he isnt getting it. Still getting his numbers and letters backwards, handwriting is awful. I am showing him the answers and he is saying something totally different. He then will growl and get angry that his brain isnt working and then tell me his useless. I actually feel ill and desperately need to get some sort of help in place. He is not getting anything we are learning. We can a few hours on something and I feel his nailed it, but the next day it's back to square one. But ask him to talk about the human body of the solar system he doesnt shut up. But anything related to the curriculum is not making any sense to him

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LizzieAnt · 15/05/2020 00:02

Hi again, yes, we've had similar struggles at school too. My DS struggled from day one really. In preschool he was 'non-compliant' and it was suggested that he was spoilt at home. He started school aged 5 and initially I thought he was doing okay. He was quiet and didn't cause trouble. I later found out that the teacher considered him sweet, but academically weak. He had huge trouble with homework. An educational psychologist's assessment aged 7 showed he had a very spiky profile of abilities, with percentile scores ranging from 4 -90%. This is common in some children with asd, adhd, dyslexia etc. Unfortunately he soon realised he was having problems himself - he is actually very bright - and his self esteem plummeted. Aged 8 he got an asd diagnosis, and moved to a unit within mainstream, as the supports he needed weren't available at his original school. It didnt work out - in part owing to a flare up of OCD behaviours - and he's been at home since then.
I'm sure this doesn't sound very encouraging OP, but the schools available to us just didn't work. We live in a rural location and you may be much luckier in the schools close to you. Secondly, my DS exhibts very avoidant behaviours so even getting a proper assessment for dyslexia, engaging in CBT etc have proven problematic so far. Hopefully your DS may fare better here too. The learning issues won't go away on their own though ,and I'd push for him to be assessed by an educational psychologist asap so his individual strengths and weaknesses are made clear. He may well need a differentiated program, and this has nothing to do with how bright he is. Some children just learn differently. Phonics isn't the best approach for every child, for example. Make sure he knows this if you can, and do everything to build his self esteem.
Just an additional note, I mentioned dyslexia above but dyspraxia can cause problems with motor skills and handwriting etc. My DS hated writing too, he found it really difficult.
However my DS's a fabulous boy, and he has imagination and insight and understanding borne of his difficulties. I would have wished for an easier path for him though, not one filled with rocks and monsters. I know you understand me. We'll make it though, and so will you and your beautiful DS, SpideyMom. You're showing so much love and concern for him, he's lucky he has you at his back. Just keep going.

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