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Crying my eyes out as I just don't know what to do(19 Posts)
Hi all! I used to come here regularly when I still lived in the UK, but haven't for the past few years.
I'm German and we moved back here 6 years ago. Two of our children have ASD, one has a dx of AS, the other of HFA.
I usually use a German forum for questions, as things work so differently here. But this time it's quite a sensitive issue. I also write a quite well read blog about our 'life', which is why I don't want to post this on that forum as I will be identified...
Ds1 with AS (8) has always be very challenging. It's always gone on easier phases and then really hard ones again. He has very extreme and violent meltdowns and has next to none impulse control.
After a few changes recently (moved house, had a baby) he entered an extremely difficult phase again (6 months ago!). It got to the point I had to pull him out of school in April and he's been at home with me since. His 1-2-1 has also been signed off sick since then as she found it all so traumatic (don't blame her!!!).
Our last hope to get him back on track to return to school was to let him stay at a neurological clinic for children, have him assessed and try out new meds on top of the risperidone he is on already. Dh took time if work to stay with him at hospital as due to his severe meltdowns they said he shouldn't /couldn't stay by himself. Week 1 was ok, then it was back to normal - meltdowns in which he kicked, hit, scratched staff, kicked in a window, provoked and insulted other children... And then again being an innocent and sweet 8yo.
Meds did nothing, and dh needed to return to work after three weeks. So they had to come home.
Dr and psych said he wouldn't last in mainstream. I agree. They also said that in their opinion he should go to a residential special school (emphasis on social and emotional devt) as we won't be able to deal with this, plus everyone- especially siblings- suffers. And this is what's tearing me apart. I am so tired. I can't do this anymore. But of course I love ds1. How can I send him away? How can he survive without feeling he is well loved despite his challenging behaviour? I feel so guilty thinking how nice it would be for our family life if he went residential. And I just don't think if I can do it. But what's the alternative? I just don't know.
Btw, the dr noted that they rarely see cases like this where a child desperately wants to change but just can't. It breaks my heart. But his behaviour really does not make him very likeable.
Oh, and I say he has a dx of AS. But I actually believe he has PDA. And that's our next problem as this diagnosis doesn't actually exist in Germany!!
Sorry for this long, long ramble. I've been crying my eyes out all evening as I just don't know how we can send our child, our firstborn away. And I am so scared he will think we don't love him. :-(
PDA barely 'exists' even in the UK- but if your dc's psych is sympathetic, it may be worth talking to him about it. You might (long shot) even be able to get your German insurer to fund assessment via the Elizabeth Newson Centre
It could be argued to fall under the EU mobility of goods and services regulations small print
Thank you poltergoose with the PDA, it only just re-occurred to me that I had doubted his dx 2-3 yrs ago. Back then I even mentioned it to someone working in the field of ASD (they supply 1-2-1s for children Wirk ASD), and seh had never heard of pda and discouraged me from taking it further...
And it only reoccurred to me as the dr at the clinic was talking about how controlling and manipulative his behaviour was, and how he had a violent meltdown as soon as he was faced with demands...
So I have just started reading up on strategies again, but it's hard as I would really need to change my approach. And I don't know how. Especially having three more littles ones who get shouted at, hit and bossed around
mair that's interesting, thank you! Germany is funny like that though. We moved from one state to a different one 4 years ago, and they honestly wanted us to go through the whole dx process again before even talking about therapies, 1-2-1 etc!!
You poor thing. I don't gave ány experience myself but two separate frieñds have sons in different residential schools and in both cases it has worked well. Lots of special time for them when they get home, lots of structure at school. 8 is younger than they were, however. Hugs and good luck.
Two of the Kings College London researchers elizabeth.o�email@example.com firstname.lastname@example.org
were actively seeking contact with parents/schools not too long ago, re participating in PDA research. They are big shots in the wider ASD research world as well, and their institution (Kings/Institute of psychiatry) is even bigger, with massive links to other international centres researching neurodevelopmental disorders.
Their team might know of centres in Germany that may be open to the concept of trying to address specific disabling PDA-like difficulties.
Scandinavia is next behind the UK for PDA recognition, I think
The reason it matters, is because if you do end up looking at residential schooling, you will want (and need) to know that professional knowledge and awareness of the best strategies is at least equal to your own. But it's really good that his doctors are open to trying different approaches, and are able to admit when their first options haven't worked well.
Out of interest, has anyone yet suggested a trial of ADHD meds for the impulsivity, and/or melatonin so you get at least some decent sleep? DS1 officially has 'just' ADHD and ASD with anxiety (plus sensory, motor etc, he's very much like a Swedish DAMP dc ), but the PDA-like behaviours are much reduced when his adhd and sleep are optimally medicated.
And since you were 'here' last, a MN special needs chat board has sprung up which only keeps posts for 90 days, so people are often on that if they're discussing something more personal. There's a virtual pub, the Goose and carrot, with a nice chair by the fire just waiting for you...
There's some research here
Current mainstream thinking is that PDA is still the autism spectrum, just experienced and expressed in a particularly distressing way. So the current diagnosis doesn't necessarily have to go.
If people can recognise there is a 'pathological demand avoidance' problem complicating your ds's AS, and which is a recognised pattern, responding to certain strategies, that would do well enough
I suggest you go and look at some residential schools, which may reassure you. They're much more comfortable and homely than they used to be, and you'll see plenty of perfectly happy children who don't feel they've been abandoned. Have a look also at schools where children can go home say every fortnight - maybe if it's only that sort of interval between visits home you'll feel better about it.
Thank you thank you, I shall definitely try to contact them!!!
He also has a dx of damp btw. And yes, at hospital they tried him on Ritalin and amphetamines. But with amphetamines it made it even worse (which is when he kicked in a glass door), and the Ritalin we are still trying now but don't really notice a change in behaviour at all.
We have an appt on thurs at a different psychiatric ward with one of the psychologists so it will be interesting to see how he reacts when I throw pda into the room.
Will have a look at that new chat room too, thank you :-) am on my phone now as already in bed, but will do tomorrow.
Thank you so much for giving me some ideas of places / people to turn to for advice!
Luckily sleep is usually not a problem!!
ici we are looking at one school next week. And I believe he could theoretically come home every weekend. Part of me is aching to leave a normal-ish life. But he is so young, and emotionally he is far younger still. But you are right, maybe by looking at some schools it will make me feel better about it.
Virtual hugs. I belive PDA is not diagnosed by the NHS in the UK yet and a few people in know in RL are having a hard time getting a private dx signed off on the NHS but maybe that's just my county.
I can't imagine how you feel. Some people have mentioned a speech school for my son that would involve him boarding at 7. Personally I can't bear the thought so it's must be crushing you.
Is there any chance of a short trail there? To see if he is happy?
How long has he been on the risperidone? - I only ask because for ds2 it made things worse and not better - unfortunately took us a couple of months to realise it had this effect on him as initially it had a beneficial effect. He had meltdowns and high anxiety before medication but on medication would attack us with no provocation. We too were literally at breaking point but he has improved vastly since taking him off the medication and a change of school setting.
What you can do is send him to the school and if your not happy and hes not happy then he can home,you can just try it for a little while and see how it goes? it would give you a well deserved break and it may teach him something at the same time. xxx
Have you looked at the PDA Society website? They have lots of specific advice, so may well be worth a look.
Don't forget to be kind to yourself as well. Go for a walk, have a nice cup of tea/coffee, sit in the bath with soft lights, whatever makes you happy. Make sure you do 1 thing a day for you.
Good luck with the residential schools. There is some useful guidance on choosing a school for a child with autism in the Parents section of the Autism Education Trust website www.autismeducationtrust.org.uk which you might find helpful.
That sounds so difficult
I agree with just looking at schools. Hope the appointment goes well re mess.
It sounds like you think residential is an answer?
How has he been since he's been home? ie did the drop in demands of not attending school help?
When is it best?
What would really help at home?
How will his siblings cope with him being away?
traditional prep school in the UK starts boarding at 7, so there are many families who choose this model of parenting and pay through he nose for it.
My child with ASD is the middle child of 5, balancing their conflicting needs is challenging. I think sometimes you just have to do your best. Life really isn't black and white and parenting is far more challenging than any of us ever thought.
The right residential school can be fantastic and really work wonders. But not an easy process findin the right one, (they are all so different) and getting them in.
Not enough support is given to the mums and dads who have to make those tough decisions. It's not failure it is just getting your DC the environment they need to grow.
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