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At my wits end with 5YO DS, suspected ASD

28 replies

AnxiousandExcited · 18/02/2021 21:00

My almost 6yo son is currently going through the extremely slow process of NHS assessment. The pediatrician suspects that he is on the autism spectrum, though she did warn me that we will most likely not get an exact 'label'.
He is very clever, but socially very irritating and somewhat 'strange'. He can't read body language and doesn't really get that other people are people, though he does show some empathy in his own way. He is a sensory seeker - constantly moving, chewing, banging, turning on and off lights, blaring music, fiddling, running, etc. He also moves the furniture constantly - so if I leave him in the playroom or bedroom alone, the only time he is 'settled' and doesn't need me is when he is moving the couches/beds/cupboards/tables - and these are items that are heavy for an adult to move, he moves everything almost every day. I am considered by my friends and family to be a firm and strict mother, it's not a discipline issue, more just driving me nutty! He doesn't seem able to control it.
Another issue that I have been firm about with no effect (because he seems to have little control over the impulse) is cutting. Though we have disappeared any scissors, every time he finds a pair, or his teacher gives him a pair in school, he cuts his trouser knees, jumper sleeves, pencil case, water bottle, schoolbag - whatever he has within reach really. Though I work with the school and he doesn't officially get scissors without supervision, he manages to get hold of things.
He loses everything, even stuff that is tied to his clothes! He has trouble with wiping after using the toilet, won't brush his teeth, won't bath without incentives (bath bombs, exciting shampoo, bath toys) and lies about washing his hands (claims he has when I know he hasn't) - and doesn't seem aware that I know he hasn't. He also has hypemobility and low muscle tone, so he can't really effectively join his peers in playground games.
As he gets older, more is expected of him and his issues become bigger. He doesn't get DLA because they said he hadn't been assessed properly yet, but I spent a lot of money on therapy equipment - swings, balls, beanbags, weighted blanket, body sock, sensory items etc. - because without that he will literally destroy my house, using the furniture and walls/doors as his therapy equipment!
Because I am very firm, he basically behaves okay most of the time, especially out the house, and especially because he hasn't been visiting others during the past year, so everyone besides close family, friends and teachers keep telling me that he is 'just a sweet kid'. He is adorable but also impossible!
I have two other boys. Today he took over my younger sons birthday party, unwrapping the gifts, playing with them, handing out the treats. When I stopped him, he went wild, screeching, hitting - not in anger, not a meltdown tantrum, just bored, restless, confused and jealous.
Any support? I don't usually vent like this but I'm at my wits end. Tonight I slapped him just to calm him down and bring him back to earth - give him that sensation!! He's reading in bed now, quite happy but 2 hours after he went to bed. He won't be able to get up tomorrow.

OP posts:
AnxiousandExcited · 08/03/2021 08:16

@nanbread I do have a partner, and a very supportive one at that. However, the majority of the childcare does fall on me because he is out most of the day (7.30am - 7pm, then again 8pm -11pm) for work - he works several jobs and is in the middle of getting his Masters. I work part-time from home whilst the children are at school.
My help used to be from several different people, including a neighbor with additional conditions who is being very careful about the virus. She also has got a different job since she had to stop working by me, so won't be coming back.
I had excellent cleaning help, someone who was too qualified to be cleaning help but wasn't qualified in the UK, who has now gone back to school to complete her UK qualifications. I really don't feel like dealing with the other cleaning help there is around, there is no-one within my budget who will work hard without supervision.
My teenaged niece used to come and help me too but she stopped by the first lockdown and now she has a different schedule and won't come.
I checked for a pump track near me, but they were all closed at the moment. I do need to increase demanding exercise but he is so resistant that it is hard!
He has low muscle tone, but not very severe at the moment due to all his OT therapy as a baby. It does fluctuate depending on his regulation.

OP posts:
nanbread · 08/03/2021 12:15

Wow that's very long hours. I'm guessing you need the money? My DH reduced good hours when we realised our children demanded more than we had to give, we have to live pretty frugally but can make it work, appreciate this isn't the case for everyone but something to consider if you can.

AnxiousandExcited · 08/03/2021 12:56

@nanbread It isn't the money, though that is helpful. He is just a huge extrovert/sensory seeker (guess where the kids get it from?) and gets really down if he is in one place more than a couple of hours, whilst I am an introvert and prefer to be at home. He helps a lot and takes the kids out when he has off, and will take off from some jobs when the kids have school holidays.
It isn't even helpful to ask him to cut down because then he gets a bit down and depressed and can't help as much...

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