Autism

[ClaphamFox]

21 hours ago, tw511 said:

Our son had his autism assessment this week. He got a dual diagnosis on the day of ASD and learning difficulties. Even though this is no surprise to us I'm still taking time to digest and process this. Maybe I wasn't quite expecting the dual diagnosis but it does make sense. 

My experience of this so far has been that there are frequent occasions when I need time to process what's going on. Our son can present very differently at different times, and it's easy to get sucked into a pattern of becoming too euphoric when things seem to be going really well, and becoming overly despondent when things are more difficult. The result is an emotional rollercoaster, which is an exhausting way to live. I'm trying to become a bit more balanced (treating triumph and disaster the same and all that), but my other half is very emotional and reactive, and sometimes it's hard to remain composed when my son AND his mother are both emotionally disregulated! 

 

We're part-way through the diagnosis process and are still not sure whether we want to go ahead or not. Now that the worry over schools has abated, we're just moving onto the next thing to worry about. That's just the way it seems to be 

Edited 11 February 2022 by ClaphamFox

[Tommy G]

Anyone found activities locally, or even in the midlands that are good for SEN children? My son isn't diagnosed yet, and is gradually improving, but sometimes its easier to do things at weekends in an environment where other parents understand, alongside the kids! Cheers  

[Basildon Fox]

2 hours ago, Tommy G said:

Anyone found activities locally, or even in the midlands that are good for SEN children? My son isn't diagnosed yet, and is gradually improving, but sometimes its easier to do things at weekends in an environment where other parents understand, alongside the kids! Cheers  

Good luck mate.  My son has been under SEN for over 4 years.  His behaviour has got better in the last year but still has problems with teachers at school, especially communication with the head teacher.  He is almost 16 and is only being assessed on Monday.  I doubt there will be anything untoward but would explain the outbursts he has had in his life.  The school have been abysmal in handling his care plan etc. although he admittedly has not helped either with attitude and behaviour.

[jonthefox]

6 hours ago, Tommy G said:

Anyone found activities locally, or even in the midlands that are good for SEN children? My son isn't diagnosed yet, and is gradually improving, but sometimes its easier to do things at weekends in an environment where other parents understand, alongside the kids! Cheers  

Out of interest, how old is he?. My son is 17 now and attends various youth clubs etc with similar kids. The county council is a good place to find suitable clubs and activities. You can even apply for funding.  

[Tommy G]

1 hour ago, jonthefox said:

Out of interest, how old is he?. My son is 17 now and attends various youth clubs etc with similar kids. The county council is a good place to find suitable clubs and activities. You can even apply for funding.  

He’s 3, he’s just got his EHCP which has been a battle - I’ve had to have 1-2-1 with Tom Common and also got Luke Evans involved, he’s ended up with 32.5 hours week which is a result. Wanted to get that secured ASAP. 
 

I’ll have a look - thanks for the tip. My main problem, more so for my wife, is trying to find other people in the same situation to talk to or meet up with. If the kids are going mental (I think I’m still allowed to use that term) at least they are doing it together 😂

[Tommy G]

5 hours ago, Zaphod Beeblebrox said:

Good luck mate.  My son has been under SEN for over 4 years.  His behaviour has got better in the last year but still has problems with teachers at school, especially communication with the head teacher.  He is almost 16 and is only being assessed on Monday.  I doubt there will be anything untoward but would explain the outbursts he has had in his life.  The school have been abysmal in handling his care plan etc. although he admittedly has not helped either with attitude and behaviour.

Our schooling is sorted as he has an EHCP….I think I wasn’t clear with my post, I meant any activities such as football, swimming, horse riding etc. getting him into stuff is a battle, even a playground…

[tw511]

13 hours ago, Tommy G said:

Our schooling is sorted as he has an EHCP….I think I wasn’t clear with my post, I meant any activities such as football, swimming, horse riding etc. getting him into stuff is a battle, even a playground…

Good luck, can't offer any recommendations 1) because we're not in Midlands 2) we've not had much luck ourselves with this sort of thing. To be fair we don't really push ourselves though, both me and my wife are quite introverted and anxious about social situations (I do think we may be on the spectrum too).

 

We tried the playground the other week with our kids and it was a nightmare...meltdowns (from autistic son) every 5 seconds and judgemental stares from parents sitting around the sides (which for me is the worst bit, it stresses me out). It's not always that bad, sometimes he has a blast and is fine. It's just good days and bad days. Most of the time we let him just dictate what he wants to do (within reason) even if that's just rolling a sellotape around the house for hours. 

[ClaphamFox]

1 hour ago, tw511 said:

Good luck, can't offer any recommendations 1) because we're not in Midlands 2) we've not had much luck ourselves with this sort of thing. To be fair we don't really push ourselves though, both me and my wife are quite introverted and anxious about social situations (I do think we may be on the spectrum too).

 

We tried the playground the other week with our kids and it was a nightmare...meltdowns (from autistic son) every 5 seconds and judgemental stares from parents sitting around the sides (which for me is the worst bit, it stresses me out). It's not always that bad, sometimes he has a blast and is fine. It's just good days and bad days. Most of the time we let him just dictate what he wants to do (within reason) even if that's just rolling a sellotape around the house for hours. 

This is hard. I find myself secretly wishing my son will present his 'best' self in front of other people, then I feel guilty for not accepting him for who he is. A few weeks ago we were at a playground and he was running around in a circle making high-pitched squealing noises. He was attracting stares and I I felt uncomfortable, then I felt ashamed for feeling uncomfortable. A while later, he came up to me and said, "Daddy, on the way home can we buy some mango from the supermarket?" - and some of the staring parents were then gawping in astonishment because they'd assumed he couldn't talk. I felt a bit smug and relieved, then I felt annoyed with myself for feeling that way. 
 

I still haven't found a way of dealing with the unpredictability of parenting an autistic child. I hope one day I will.

[tw511]

54 minutes ago, ClaphamFox said:

This is hard. I find myself secretly wishing my son will present his 'best' self in front of other people, then I feel guilty for not accepting him for who he is. A few weeks ago we were at a playground and he was running around in a circle making high-pitched squealing noises. He was attracting stares and I I felt uncomfortable, then I felt ashamed for feeling uncomfortable. A while later, he came up to me and said, "Daddy, on the way home can we buy some mango from the supermarket?" - and some of the staring parents were then gawping in astonishment because they'd assumed he couldn't talk. I felt a bit smug and relieved, then I felt annoyed with myself for feeling that way. 
 

I still haven't found a way of dealing with the unpredictability of parenting an autistic child. I hope one day I will.

Exactly this. Plus me getting flustered and stressed out then makes the situation worse as my son picks up on it. Sometimes I feel like I spend a lot of time feeling guilty and inadequate as a parent (that goes for both kids) but not all the time thankfully. We can only try our best. 

 

I do really wish I could just not give a fig what other people think but in reality it doesn't go that way for me...

[Foxdiamond]

43 minutes ago, tw511 said:

Exactly this. Plus me getting flustered and stressed out then makes the situation worse as my son picks up on it. Sometimes I feel like I spend a lot of time feeling guilty and inadequate as a parent (that goes for both kids) but not all the time thankfully. We can only try our best. 

 

I do really wish I could just not give a fig what other people think but in reality it doesn't go that way for me...

I wish you all the best. Parenthood is tough under most circumstances. My grandson is on the spectrum. Very bright but struggles sometimes at school if the situation does not suit him. I suppose you can feel isolated when trying to cope. You are right. You can only do your best and give love and care. Take each day as it comes and try not to worry too far in advance 

[tw511]

2 hours ago, Foxdiamond said:

I wish you all the best. Parenthood is tough under most circumstances. My grandson is on the spectrum. Very bright but struggles sometimes at school if the situation does not suit him. I suppose you can feel isolated when trying to cope. You are right. You can only do your best and give love and care. Take each day as it comes and try not to worry too far in advance 

Thank you, kind words. 

[Tommy G]

https://www.santasinclusivegrotto.co.uk/

 

This is supposed to be very good

[dsr-burnley]

On 17/06/2022 at 11:07, tw511 said:

(I do think we may be on the spectrum too).

Surely everybody is on the autism spectrum?  We all have our behaviours, and it's a matter of professional judgement whether a child who sometimes misbehaves is just a "normal" child being naughty or whether it's a child who isn't "normal".

 

Sorry about the use of "normal" for a child that isn't autistic, but what I mean is that "normal" in health matters means someone not in need of treatment and "not-normal" means someone who is in need of treatment, based on the default healthy position of not needing treatment.  I can't think of a better way to put it. 

[Tommy G]

1 hour ago, dsr-burnley said:

Surely everybody is on the autism spectrum?  We all have our behaviours, and it's a matter of professional judgement whether a child who sometimes misbehaves is just a "normal" child being naughty or whether it's a child who isn't "normal".

 

Sorry about the use of "normal" for a child that isn't autistic, but what I mean is that "normal" in health matters means someone not in need of treatment and "not-normal" means someone who is in need of treatment, based on the default healthy position of not needing treatment.  I can't think of a better way to put it. 

I think until you have any kind of dealing or experience with a child on ''the spectrum'' you will realise everyone isn't on the spectrum. I don't think anyone will be offended by your normal definition  

[ClaphamFox]

1 hour ago, dsr-burnley said:

Surely everybody is on the autism spectrum?  We all have our behaviours, and it's a matter of professional judgement whether a child who sometimes misbehaves is just a "normal" child being naughty or whether it's a child who isn't "normal".

 

Sorry about the use of "normal" for a child that isn't autistic, but what I mean is that "normal" in health matters means someone not in need of treatment and "not-normal" means someone who is in need of treatment, based on the default healthy position of not needing treatment.  I can't think of a better way to put it. 

If everybody were on the spectrum, the word autism would be meaningless and there would be no way to describe the experience of autistic people in a clear way. It is true that autism is different from some other developmental disorders in that there is no simple diagnostic test for it - ie, diagnosis is based on the judgment of a range of professionals. But that does not mean that everybody is on the spectrum. Lots of people may have some autistic traits, but that won't necessarily mean they're autistic. I find it slightly irritating when I tell people my son is autistic and they respond by saying, "I think I'm on the spectrum too" when what they really mean is that they have a few routines they obsessively follow or feel a bit awkward in certain social situations. 

 

Your use of the word 'normal' is not offensive. It's just another way of saying 'neurotypical'. And yes, the dividing line between those on and off the spectrum ultimately comes down to whether they need support or not.

[Tommy G]

41 minutes ago, ClaphamFox said:

If everybody were on the spectrum, the word autism would be meaningless and there would be no way to describe the experience of autistic people in a clear way. It is true that autism is different from some other developmental disorders in that there is no simple diagnostic test for it - ie, diagnosis is based on the judgment of a range of professionals. But that does not mean that everybody is on the spectrum. Lots of people may have some autistic traits, but that won't necessarily mean they're autistic. I find it slightly irritating when I tell people my son is autistic and they respond by saying, "I think I'm on the spectrum too" when what they really mean is that they have a few routines they obsessively follow or feel a bit awkward in certain social situations. 

 

Your use of the word 'normal' is not offensive. It's just another way of saying 'neurotypical'. And yes, the dividing line between those on and off the spectrum ultimately comes down to whether they need support or not.

Exactly - same here. Do they have problems verbalising, or going to bed at a normal time and sleeping ''normally'', eating - foods with different textures and a balanced diet, keeping themselves out of danger, sensory issues, wearing nappies beyond 3 years of age, eye contact, lack of interaction and play - I could list a million other difficult and frustrating daily experiences.

[tw511]

I've heard 'everyone is on the spectrum' thrown about a bit (including by my parents) but it's completely false (as stated above). I do sometimes get a bit irritated when I hear this, but then I remember I used to say the same thing myself prior to becoming more clued up, so I try not to be. Sometimes said with good intentions by way of reassurance. 

[tw511]

How is everyone getting on?

 

After a long journey we managed to get out boy in a specialised school (mixed disabilities but most in his class have ASD in some form). He started in September and is doing so well, really happy there. 

[The whole world smiles]

On 16/06/2022 at 13:46, Tommy G said:

Anyone found activities locally, or even in the midlands that are good for SEN children? My son isn't diagnosed yet, and is gradually improving, but sometimes its easier to do things at weekends in an environment where other parents understand, alongside the kids! Cheers  

https://bamboozletheatre.co.uk/bamboozles-backyard-a-re-wilding-experience/ this sounds interesting for those with younger kids with autism.