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Kids with Autism

Rhubarb

Rhubarb

Midfield
Hey folks. Hope everyone is alright.

Son got diagnosed with autism two year ago. He can’t manage school and has nudge worker every day.

He’s doing really well at minute and this might sound like nothing but I’m 40 year old I do four 12 hour shifts off the belt. He doesn’t want or need anything.

At the minute though if I have a can he calls me smackhead or pisshead. Was trying to buy tickets for boro match and he said no even though he wanted to go earlier on.

I said I would go with me mates and he said I’m not allowed. I won’t go cos I know he will kick off with the wife if I leave.

Bloody hard work. Sorry for the moan.
 

Rhubarb said:
Hey folks. Hope everyone is alright.

Son got diagnosed with autism two year ago. He can’t manage school and has nudge worker every day.

He’s doing really well at minute and this might sound like nothing but I’m 40 year old I do four 12 hour shifts off the belt. He doesn’t want or need anything.

At the minute though if I have a can he calls me smackhead or pisshead. Was trying to buy tickets for boro match and he said no even though he wanted to go earlier on.

I said I would go with me mates and he said I’m not allowed. I won’t go cos I know he will kick off with the wife if I leave.

Bloody hard work. Sorry for the moan.
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Moan away.

I am afraid I know very little about Autism so can offer no help.

Sounds like hard work tho. You seem to be managing fine but a secret moan always helps.

Good luck.
 
Rhubarb said:
Hey folks. Hope everyone is alright.

Son got diagnosed with autism two year ago. He can’t manage school and has nudge worker every day.

He’s doing really well at minute and this might sound like nothing but I’m 40 year old I do four 12 hour shifts off the belt. He doesn’t want or need anything.

At the minute though if I have a can he calls me smackhead or pisshead. Was trying to buy tickets for boro match and he said no even though he wanted to go earlier on.

I said I would go with me mates and he said I’m not allowed. I won’t go cos I know he will kick off with the wife if I leave.

Bloody hard work. Sorry for the moan.
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Moan away. It sounds really hard to manage - how old is he?
 
Thanks for the response people. Been good this week. Just finished my last block of shifts so off for four days now. He had his rugby union training at North Shields Sunday and that’s his happy place.

Like a new kid compared to when I came on here for a moan and that’s usual. I just wanted to vent the other day.

And I hope it didn’t come across as if I was looking for sympathy as there’s much much people worse off than us. Even though we have learnt how to react and deal with the bairn it still gets me down when he has a bad time.

I mean the other week he cried for a week nearly non stop cos he was scared to die.
Sitting in my arms crying until he fell asleep saying daddy don’t let me die.

Then two days later he’s doing the same but saying daddy let me die cos my head hurts.

I mean what the fuck. I started this thread and thanks for reply’s it does mean a lot. If anyone is going through anything similar or needs to talk about anything I’m free for. Pm. Take care people. Love Rhubarb. X
 
Rhubarb said:
Thanks for the response people. Been good this week. Just finished my last block of shifts so off for four days now. He had his rugby union training at North Shields Sunday and that’s his happy place.

Like a new kid compared to when I came on here for a moan and that’s usual. I just wanted to vent the other day.

And I hope it didn’t come across as if I was looking for sympathy as there’s much much people worse off than us. Even though we have learnt how to react and deal with the bairn it still gets me down when he has a bad time.

I mean the other week he cried for a week nearly non stop cos he was scared to die.
Sitting in my arms crying until he fell asleep saying daddy don’t let me die.

Then two days later he’s doing the same but saying daddy let me die cos my head hurts.

I mean what the fuck. I started this thread and thanks for reply’s it does mean a lot. If anyone is going through anything similar or needs to talk about anything I’m free for. Pm. Take care people. Love Rhubarb. X
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Sounds awful mate.

Give yourself a break
 
Rhubarb said:
Thanks for the response people. Been good this week. Just finished my last block of shifts so off for four days now. He had his rugby union training at North Shields Sunday and that’s his happy place.

Like a new kid compared to when I came on here for a moan and that’s usual. I just wanted to vent the other day.

And I hope it didn’t come across as if I was looking for sympathy as there’s much much people worse off than us. Even though we have learnt how to react and deal with the bairn it still gets me down when he has a bad time.

I mean the other week he cried for a week nearly non stop cos he was scared to die.
Sitting in my arms crying until he fell asleep saying daddy don’t let me die.

Then two days later he’s doing the same but saying daddy let me die cos my head hurts.

I mean what the fuck. I started this thread and thanks for reply’s it does mean a lot. If anyone is going through anything similar or needs to talk about anything I’m free for. Pm. Take care people. Love Rhubarb. X
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I think that is quite funny and happens all the time. You come on here for a moan then the wee bugger is perfect for a while like grr making a liar out of you (all said in the most lighthearted way) 😁

The slings and arrows of bringing up your son are always going to present themselves but it is obvious from your post the rewards will always be worth it.

And when he is a big Rugby union star, you will be able to get us all Free tickets for his games.
 
It depends where he is on the spectrum but try not to make his autism an excuse and give him the boundaries where possible. They take a lot of explaining and frequently a push when you know it’s something they can achieve. It’s a though world for them to be adults in so anything you can do now will help.

I say this with a “highly functioning” (not a fan of that term) autistic daughter whose about to turn 18 and the hormonal years have been a nightmare but she is doing great.

P.s. educational health care plans etc. are a nightmare to get but appeal everything. Social care in Sunderland seems to be in a shocking state and they will allow things to drift out of existence if your not on top of them.
 
nessen said:
It depends where he is on the spectrum but try not to make his autism an excuse and give him the boundaries where possible. They take a lot of explaining and frequently a push when you know it’s something they can achieve. It’s a though world for them to be adults in so anything you can do now will help.

I say this with a “highly functioning” (not a fan of that term) autistic daughter whose about to turn 18 and the hormonal years have been a nightmare but she is doing great.

P.s. educational health care plans etc. are a nightmare to get but appeal everything. Social care in Sunderland seems to be in a shocking state and they will allow things to drift out of existence if your not on top of them.
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My son is 15 and in year 10, we have just put the referral in to try to get him an EHCP. I have been trying to get his school to apply for one since he started but it's only now they have realised he really will need support when he leaves school. I fully expect him to be turned down and will need to appeal and will probably end up at a tribunal. If he doesn't get one then he can't go to college as he has never ever left the house without me (apart from to go to school which is a 5 minute walk away). He can't use public transport, follow journey plans, cross roads, judge traffic speeds or cross roads. He is also high functioning so very clever but just can't cope with life outside of home. He has really bad problems with social and emotional skills so couldn't ask people for help. I am praying he gets it but expecting a very difficult process ahead.
Good to hear your daughter is doing well xx
 
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ATS said:
My son is 15 and in year 10, we have just put the referral in to try to get him an EHCP. I have been trying to get his school to apply for one since he started but it's only now they have realised he really will need support when he leaves school. I fully expect him to be turned down and will need to appeal and will probably end up at a tribunal. If he doesn't get one then he can't go to college as he has never ever left the house without me (apart from to go to school which is a 5 minute walk away). He can't use public transport, follow journey plans, cross roads, judge traffic speeds or cross roads. He is also high functioning so very clever but just can't cope with life outside of home. He has really bad problems with social and emotional skills so couldn't ask people for help. I am praying he gets it but expecting a very difficult process ahead.
Good to hear your daughter is doing well xx
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Who needs to support the EHCP mate? As in who’s the person appointed by the school to make the final decision?

Sounds like you’re going through a shite time and wish you and your son the best.

Are there any colleges or sixth forms that are in the region that can cater for the needs of your son? It seems like such a missed opportunity for people such as your son who are intelligent (as with many people diagnosed with autism) who would thrive in specific careers if given the right guidance.

I used to work closely with a charity based in the US and one of the young lads who I got to know really well (who was highly functioning) got a job working for BAE systems a few year back. Works from home (lives with his parents and is also wheel chair bound) but is an absolute diamond of an employee - has quickly moved up the ladder. He was able to get a lot of support from charities in the US that helped assist his education, which is something we seem to lack here in the U.K. which really pisses me off.
 
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Seems your doing your best mate and it's pretty tough. Unlike a lot of things there's no real right way to work with autism because everyone's different and can be to massive degrees so it's all about finding what works best for you.

My son's has autism but it doesn't really affect him loads. Main issue I have is taking him places, especially if they get crowded and he either goes into a shell or has a panic attack.

When kids and teenage years is tough as well because you do t know what is just habits, phases, hormones or autism so it can be tough trying tongo about things to try and make a positive impact without thinking am I just creating strife for them with no real progress to be made.

Like I say for the above issue I've been trying to take him places so he gets more used to crowded conditions as hes gonna have to navigate them at somepoint in the future. Just like once a fortnight head to a shopping mall or event or something and just see if he gradually gets used to it. I think it is working but slow progress.

Other thing is COVID and not sure if it's related to large lockdowns at the wrong age cause he was never bothered before that. Bit of a minefield tbh but I've got it much easier than lots of parents with kids who have autism and have much harder needs. Main thing is your doing your best and seem happy to make sacrifices to get the best for him so I'm sure you'll get there and give him the best advice and guidance you can.
 
ATS said:
My son is 15 and in year 10, we have just put the referral in to try to get him an EHCP. I have been trying to get his school to apply for one since he started but it's only now they have realised he really will need support when he leaves school. I fully expect him to be turned down and will need to appeal and will probably end up at a tribunal. If he doesn't get one then he can't go to college as he has never ever left the house without me (apart from to go to school which is a 5 minute walk away). He can't use public transport, follow journey plans, cross roads, judge traffic speeds or cross roads. He is also high functioning so very clever but just can't cope with life outside of home. He has really bad problems with social and emotional skills so couldn't ask people for help. I am praying he gets it but expecting a very difficult process ahead.
Good to hear your daughter is doing well xx
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It sounds a familiar story! All you can do is keep pushing for the EHCP. Suggest you research “everyone’s entitled to an eduction” - article 28 of the UNCRC. If still Sunderland go online and use the together for children SEND ranges. Use these to build your evidence and you need to get to level 4 in the range.

Good luck!
 
nessen said:
It sounds a familiar story! All you can do is keep pushing for the EHCP. Suggest you research “everyone’s entitled to an eduction” - article 28 of the UNCRC. If still Sunderland go online and use the together for children SEND ranges. Use these to build your evidence and you need to get to level 4 in the range.

Good luck!
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Who is it mate that once you push for an EHCP that makes the final decision? What sort of post do they hold?
 
When you appeal they’ll get a mediator involved. It’s at this point that you must not react to them just throw facts and evidence at them.

We had issues with getting appointments arranged and being constantly cancelled. Then ask for managers but that’s about as far as you can get I’m afraid.
 
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