Just about the worst day of my life

[Silver993tt]

Hammer67 said:

Silver993tt said:

What's his diet like? He should be avoiding all wheat based and dairy products and be on a 100% gluten free diet. If not this should be tried for a period of at least 3 months.

Been there, was a few years ago now but had no effect whatsoever. J eats anything and everything that is put in front of him. By his own choice he drinks water, he loves coke but only gets it as an occasional treat. Never drinks tea or coffee or any alcohol.
As a baby/toddler his diet was very limited, marmite on toast mainly but now he eats very well, and much more healthily than your average 19yo.
He's never suffered from any sort of digestion or bowel problems, his weight is fine if slightly under what it might be and apart from some eczma type dry skin issues he is very healthy.

Refresh my memory, what makes you say "this should be tried"? What would you expect to change? As I say it's been a while and can't quite recall the reasons for going gluten and dairy free.

The issues with gluten in this respect is porous bwel syndrome. The gluten goes straignt into the blood stream bypassing much of the digestive process leading to the sudden change in behaviour/mood. As I said, this needs to be cut out completely for a good length of time like 3 months. My best friend has an autistic son who is now 21. She changed his diet soon after diagnosed at the age of 5. Zero wheat/glute/dairy for 6 months. His tantrums/mood swings were virtully eliminated. She did a lot of research on the subject and swtched her career (by lots of study) to become a qualified nutitionist around 12 years ago.

[SimonTheSailor]

Think my cousin may have gone to that school, it helped him massively come out of himself, communicate and deal with things in a better way.

Must have been a very traumatic time but you made the right decision for everybody especially your son.

My cousin went to college too and passed his exams, don't know if it was at Lingfield or not but might have been.

Great he is seeing results and gaining from the care you have sought for him.

[Hammer67]

Update time again.

J's first term at St Piers has just finished and, thankfully, been just fine. His placement is weekly so we've been back and forth with him every weekend. A 140 mile round trip to collect him on Friday and the same again to take him back on Sunday.
We've organised our business so that Friday is a day for me and Mrs H67 to unwind and just be a couple en route to collecting J from Lingfield. We've joined the National Trust and have visited a few places near to the college ~ Hever Castle, Bewl Water and Chartwell so far. Sometimes we take the dogs, sometimes we don't. Wonderful, lazy days just wandering around doing nowt, a coffee in a cafe, a beer in a pub, fish and chips, sitting on a bench by a lake. Simple stuff that we should have made time for all through our journey with J but just never managed it somehow.

Mrs H67 was dreading these trips but now it's the highlight of our week. Strange how things turn out.

H67.

[ali_kat]

[so called]

Great to read such experiences.
I don't mean the hard parts but the by way things have developed positively with the right help.
Hopefully someone will read this thread and see that things can work out and the pain and and emotional turmoil can be eased.
I dont know of anything more painful than to see your children going through difficulties.

Congrats and my best wishes for J's and your families futures.

[Z4monster]

Great to hear that things are working out for you all. Thanks for the updates.

[duffy78]

glad this worked out the way it did. Really good news.


We've just recently received a diagnosis for my youngest son after 20months wrangling with camhs. 7 years old with ASD ADHD and SPD, albeit high functioning.

Meltdowns getting rarer as he gets older but more violent. My wife is dreading the day that he is too big to restrain (sounds worse than it is, he responds really well to being cuddled firmly)

As it is getting punched in the face from him is painful!!

[Hammer67]

duffy78 said:

glad this worked out the way it did. Really good news.


We've just recently received a diagnosis for my youngest son after 20months wrangling with camhs. 7 years old with ASD ADHD and SPD, albeit high functioning.

Meltdowns getting rarer as he gets older but more violent. My wife is dreading the day that he is too big to restrain (sounds worse than it is, he responds really well to being cuddled firmly)

As it is getting punched in the face from him is painful!!

Sorry to hear that my friend. I can offer nothing that will be much help. Every case is different, you will feel that you are the first family who ever had this happen. We certainly did. I desperately hope your journey is as smooth and stress free as it possibly can be.

One big mistake we made was focussing too much on J and his autism. Too many other parts of our life, our marriage, our daughter, our social life, my sporting career, to name but a few, got forgotten. J's autism will always be there and we spent too many, irreplaceable years trying to pull up trees in our efforts for him. Getting the balance right is a tough gig, we didn't manage it and my advice to you would be, be a little bit selfish, watch your wife very carefully for distress signals and act if you see any. I look back now and can pinpoint a couple of times when I'm pretty sure Mrs H was on the brink. Good luck.

[bazza white]

Great knees he's doing well. Hows the daughter getting along, how is the brother sister relationship.



The decision to home a child is a hard one, we have a family friend who has a mentally handicapped daughter (think 5ft9 18st toddler) my mum spent a few years persuading them to look at care options and they eventually gave in when she was 23. Best thing they ever did. Now at 30ish Victoria is coming on leaps with hand signals and other new things and the dad has chilled right back and enjoying life, the mum is still 500mph but less stressed plus they now enjoy their relationship with them daughter taking her for days out.

[duffy78]

Hammer67 said:

Sorry to hear that my friend. I can offer nothing that will be much help. Every case is different, you will feel that you are the first family who ever had this happen. We certainly did. I desperately hope your journey is as smooth and stress free as it possibly can be.

One big mistake we made was focussing too much on J and his autism. Too many other parts of our life, our marriage, our daughter, our social life, my sporting career, to name but a few, got forgotten. J's autism will always be there and we spent too many, irreplaceable years trying to pull up trees in our efforts for him. Getting the balance right is a tough gig, we didn't manage it and my advice to you would be, be a little bit selfish, watch your wife very carefully for distress signals and act if you see any. I look back now and can pinpoint a couple of times when I'm pretty sure Mrs H was on the brink. Good luck.

Thanks for your thoughts. siblings suffering, they are 10 and 6, boy and girl. Marriage suffering, crisis mode at the minute but we are muddling through

[Hammer67]

duffy78 said:

Thanks for your thoughts. siblings suffering, they are 10 and 6, boy and girl. Marriage suffering, crisis mode at the minute but we are muddling through

I can well imagine what you're all going through. Get help my friend, wherever you can find it. Try and get respite. That helps immensely even if its only for a day a week or even a few hours. Don't let it take over your family like we did. Make the tough decisions to give your other children and your wife priority. Christ that sounds heartless, but I wish I'd had the courage/leadership/guts to have done it. You're not alone bud, pm me if you want, I'll help if I can.

[Hammer67]

bazza white said:

Great knees he's doing well. Hows the daughter getting along, how is the brother sister relationship.

Thanks. My daughter has just moved into a flat with her boyfriend in Folkestone. She's just turned 22 and is fiercely protective of her brother. Scarily so in fact. I'm hugely proud of her and how she hung in there during the tough times we went through.

[sjc]

Bloody Hell... A happy hammer who's a member of the National Trust ??
Whatever bloody next ?? !!!

[Hammer67]

sjc said:

Bloody Hell... A happy hammer who's a member of the National Trust ??
Whatever bloody next ?? !!!

Tell me about it. Whoda thunk it?

[oldbanger]

duffy78 said:

glad this worked out the way it did. Really good news.


We've just recently received a diagnosis for my youngest son after 20months wrangling with camhs. 7 years old with ASD ADHD and SPD, albeit high functioning.

Meltdowns getting rarer as he gets older but more violent. My wife is dreading the day that he is too big to restrain (sounds worse than it is, he responds really well to being cuddled firmly)

As it is getting punched in the face from him is painful!!

As our girls are adopted/kinship fostered I have wound up getting support from the la adoption support team. This has mainly been in the form of therapeutic parenting training. The techniques work for high functioning autism as well as for attachment disorders.

A couple of helpful books are
the explosive child and therapeutic parenting in a nutshell if you are interested in exploring further. The latter is free on kindle unlimited.

[duffy78]

Hammer67 said:

I can well imagine what you're all going through. Get help my friend, wherever you can find it. Try and get respite. That helps immensely even if its only for a day a week or even a few hours. Don't let it take over your family like we did. Make the tough decisions to give your other children and your wife priority. Christ that sounds heartless, but I wish I'd had the courage/leadership/guts to have done it. You're not alone bud, pm me if you want, I'll help if I can.

oldbanger said:

As our girls are adopted/kinship fostered I have wound up getting support from the la adoption support team. This has mainly been in the form of therapeutic parenting training. The techniques work for high functioning autism as well as for attachment disorders.

A couple of helpful books are
the explosive child and therapeutic parenting in a nutshell if you are interested in exploring further. The latter is free on kindle unlimited.

thanks

[twoblacklines]

I have autism. I have done what your son in the OP has done. I once broke my toe by putting my foot through a stained glass window, fk that hurt, but you don't even realise at the time.

The only tips I have for you are...

1. Diet. Super important. I do keto when I am not eating junk food. Viscious circle for me that, the social problems the anxiety causes cause me to feel bad for myself then I binge. If I can get in the right mindset though, I would say 90% of my autism related problems go away by being on a ketogenic diet. This cuts out most of the problem foods in itself. I feel a lot calmer.

2. Mindfulness meditation. Takes a while to learn, has helped me TREMENDOUSLY. Now when I fly into a rage I can see and understand what I am doing slightly before I do it. Have managed to talk myself out of many of these. Do 20 mins a day twice a day, lie down on back for now.

3. Make sure he never becomes a recluse. 4 years ago I binned ALL my friends, having been sick of not fitting in or people not understanding me. This causes social anxiety, now I can't make friends because I am scared of everyone. I can't go to the cinema, sometimes I can only shop at Asda at 3am when no one else is there, I can't do a world of things because it triggers a rage, which I avoid.

4. Keep him off online dating sites, pof, tinder etc. This causes depression, the people on there almost sense you are different and I get a lot of abuse, people take out their stress on you. I don't know how they sense it but they do. I have also been banned from SO MANY forums because I rub people up the wrong way by just being "normal" atleast normal to me. Either picked on and banned for retaliation or just not being understood properly.

The good news is there are some advantages. If we want to do something we do it. There is a reason Einstein and similar were autists. Also, if we are in the right mindset, we can turn off our feelings. Meditation will help then. An example, I don't go to funerals because I can turn off my empathy to help me cope.

Just read some of the last page. My parents thought the best thing to do was to ship me off to boarding school for 5 years. Unsure if this was out of love or they just cba with me anymore. Either way it fkED ME UP for life really... I was isolated, bullied to the point of suicide, amazed I lasted that long. It was like prison movies, best way to describe it. Including the rape scenes but we won't go there....
Wrist hurting from typing now, might add more, good luck.

Edited by twoblacklines on Wednesday 2nd November 00:27

Edited by twoblacklines on Wednesday 2nd November 00:30

[King Herald]

Hammer67 said:

.......Try and get respite. That helps immensely even if its only for a day a week or even a few hours. Don't let it take over your family like we did. Make the tough decisions to give your other children and your wife priority. Christ that sounds heartless, but I wish I'd had the courage/leadership/guts to have done it. You're not alone bud, pm me if you want, I'll help if I can.

I have nothing to offer, but I can feel your pain a little. A nephew of mine here in the Philippines has an very autistic daughter, about 10 years old now. There is no welfare to speak of here, no NHS type system, no real help or knowledge pool available, so he has to deal with it as best he can.

When I first met him 15 years ago he was a happy go lucky lad, very smart, computer technician, always laughing, joking, but now he is gutted, ten years of looking after the girl, fighting the good fight, doing his best on the help available.

Against lots of advice he and his wife (who is a useless sack of shyte) had a second child, who turned out perfectly normal. She is probably his saviour, carries him through whatever the other daughter throws at him each day.

They come to our house occasionally, and the autistic daughter loves to get in our small swimming pool, it seems to calm her down incredibly well, and gives him chance to unwind and have a chat.

But there is no getting her out of the pool until she is good and ready. No way, tantrums, screaming, all the stuff you know so well. So he just waits until she is done, has a couple of beers, chats with the wife for hours.

I wish you all the best with your lad.

[Hammer67]

twoblacklines said:

I have autism. I have done what your son in the OP has done. I once broke my toe by putting my foot through a stained glass window, fk that hurt, but you don't even realise at the time.

The only tips I have for you are...

1. Diet. Super important. I do keto when I am not eating junk food. Viscious circle for me that, the social problems the anxiety causes cause me to feel bad for myself then I binge. If I can get in the right mindset though, I would say 90% of my autism related problems go away by being on a ketogenic diet. This cuts out most of the problem foods in itself. I feel a lot calmer.

2. Mindfulness meditation. Takes a while to learn, has helped me TREMENDOUSLY. Now when I fly into a rage I can see and understand what I am doing slightly before I do it. Have managed to talk myself out of many of these. Do 20 mins a day twice a day, lie down on back for now.

3. Make sure he never becomes a recluse. 4 years ago I binned ALL my friends, having been sick of not fitting in or people not understanding me. This causes social anxiety, now I can't make friends because I am scared of everyone. I can't go to the cinema, sometimes I can only shop at Asda at 3am when no one else is there, I can't do a world of things because it triggers a rage, which I avoid.

4. Keep him off online dating sites, pof, tinder etc. This causes depression, the people on there almost sense you are different and I get a lot of abuse, people take out their stress on you. I don't know how they sense it but they do. I have also been banned from SO MANY forums because I rub people up the wrong way by just being "normal" atleast normal to me. Either picked on and banned for retaliation or just not being understood properly.

The good news is there are some advantages. If we want to do something we do it. There is a reason Einstein and similar were autists. Also, if we are in the right mindset, we can turn off our feelings. Meditation will help then. An example, I don't go to funerals because I can turn off my empathy to help me cope.

Just read some of the last page. My parents thought the best thing to do was to ship me off to boarding school for 5 years. Unsure if this was out of love or they just cba with me anymore. Either way it fkED ME UP for life really... I was isolated, bullied to the point of suicide, amazed I lasted that long. It was like prison movies, best way to describe it. Including the rape scenes but we won't go there....
Wrist hurting from typing now, might add more, good luck.

Edited by twoblacklines on Wednesday 2nd November 00:27

Edited by twoblacklines on Wednesday 2nd November 00:30

Very interesting post, thanks for taking the time. The fact that you are able to express your feelings and write this sets you apart from my lad who, sadly, is not. I strongly suspect much of what you say would resonate with my son if he had the capacity to tell us.

All the best my friend, what you've been through sounds horrific.

[twoblacklines]

Hammer67 said:

Very interesting post, thanks for taking the time. The fact that you are able to express your feelings and write this sets you apart from my lad who, sadly, is not. I strongly suspect much of what you say would resonate with my son if he had the capacity to tell us.

All the best my friend, what you've been through sounds horrific.

I was like your son when I was 19. Hell, I broke my toe kicking through a stained glass door when I was 27 in a rage. I am 30 now. What did it for me was spirituality. When you realise you are connected to everyone through the quantum field you realise you are never truly alone. Being autistic, the world sometimes feels very lonely. You vs everyone. In your depression, you don't see the fact there are others with the same problems. You don't see others at all. It's not a cure but it really helps. And exercise and the right diet is really important. You just gotta realise you are different and don't try to be normal, because you will suck at it and so it gets worse. And you gotta find people who understand and care. That is probably the hardest part.