Here some suggested organisations that offer expert advice on SN.
CAHMS said DS prob has asperges(34 Posts)
Now waiting to be referred to Harper House.
Does anyone else have experience of either this situation or this possible diagnosis? He is 6.
I wonder whether Robin Pauc's method would be helpful,too.
Mixed feelings but mostly hopeful and relieved. Worried about possible 'lifelong diagnosis'. Is it wiser to get a private diagnosis. I've heard some friends saying so as then don't need to be labelled or disclose. Also, less likely to be discriminated against. Thoughts welcome
Harper House is a good move. I'd stick with it depending on waiting list.
Discrimination or otherwise of your ds will be more to do with the setting he attends than the 'signposting' he might be given.
Thank you RaRa. Did you have a DC who was referred there, too?
You don't have to disclose even with an NHS diagnosis. We do but only so that the ds's can get support & they get a lot more appropriate help with the 'AS Label" than the "Disruptive label" they had previously.
I agree with what one said.
It is a difficult time be kind to yourself and eat .
Oh, one - I thought this lifetime label that CAMHS is going on about means I have to go around to every school and holiday camp virtually sticking it on his forehead.
However, since I've been telling camp and school that CAHMS were even assessing him, I've had far kinder and more thoughtful, appropriate 'handling' of him. I'm not adverse to telling people as I don't want the naughty label (he's really well-meaning)
but I'm scared to bits of comments being made behind our backs about bit wanting a child with SN at beavers, in 'their child's class', school, holiday club, etc.
I'm also a bit sad but more than that kind of relieved. I've had years (4) of berating and questioning myself - my parenting style. Now, I feel more sad but more compassion vs anger towards him and myself.
And has anyone been through this emotional transition of feeling angry with their child (thinking he/ she was belligerent and just haaaaaaard work, with nothing lasting for more than a few days in terms of motivation) - only to be given a REASON / probably diagnosis and suddenly feel no anger at all, just sorrow and love. Every time I look at him and that we chat, it's as if I can't stop imagining a literal label across him: asperges. I just want to cuddle him and make it all better. I hope they help me to help him.
Any charities or support groups/ telephone lines that could advise me would be v much appreciated.
This has been a long time viking - despite him only being 6. It may be that Harper House will do the full assessment and find that he only has 'traits of' it but from what CAHMS said, "he scored quite highly" on their questionnaire and "He was quite striking" ?!?! was how the CAMHS assessor described him.
Totally normal goodness. My ds was five when we started the referral process, and my relationship with m really changed. Telling people about his dx has definitely helped with out of school activities, leaders/teachers have been very gentle with him. My ds was labelled naughty from about two on, so it is much much better that people see him as a little boy trying to do his best. Better for him too, and when you and he are ready I would recommend telling him about his dx.
There is a fab parents support group in my area which as been a real life line. Try NAtional autistic society, they might have lists of local groups? Or a bit of googling might turn one up, that's how I found mine
Goodness knows - your very open and honest post re change of the way we view our children is exactly how I was when DS was referred by CAMHs. He is also referred for AS assessment. I found when I told some clubs and settings they weren't the least bit surprised he's likely to have a dx of AS!
Thank you Levantine and Yourewinning.
Can I ask how and when you told your son about his asperges?
Goodness... That was a spot on description of the transition from anger/ frustration/ impatience to post realisation sorrow / love/ patience.
I had questions in my mind about ds from about 2 and I knew for sure by 5 when his little sister came along.
Ds was 9 when he was assessed ( it took a verrrry lonnnng while before everyone else could see it).
We were open with him about where we were going and what he was being assessed for - it made sense for US to do it that way because that is how we are generally anyway -Any attempt at a ' covert mission' or vagueness would have put him on high alert and raised anxiety.
He is now nearly 17... And very lovely :-)
Weirdly enough , I met the 2 people who dx'd him recently . (I've been doing parent rep stuff ) They remembered us (ahem... Yep people usually do remember ds!) and they asked me how useful the dx had been. We have had no other dealings with that team. When I enthused and spoke about the positive difference it made to how ds felt about himself, the Dr and SALT did a little air punch. :-)
maybe cos I'm crying about everything emotional at the moment, post my own major surgery your air punching assessors made me ... teary.
I wish I could know how things will be and how to begs help my DS.
I'm worried about how his school will cope with / keep him. They're fantastic!!!! He was at a state school and now at an academic hot house. He's bright as a button but only really willing to listen or channel it into any/ all things to do with... electricity.
My other worries are how common it is to experience bullying (although he's v verbal and quite confident, DOES 'get' less literal language/ metaphor, etc. - he has no real friends ).
Until now, and ongoing, his peers and adults in charge and in ALL clubs he's tried/ been in prob thought that he is/was unwilling/ didn't follow instructions and was 'naughty' / disruptive.
Now, will they reject him because he's 'special'? I'm worried about ignorant negative misconceptions and prejudice. Although, I know I can do nothing about this and wouldn't want those sorts of friends or adults in his life, I do want to 'fix ' his loneliness.
And then there's my work. In addition to having spent the last 4 of his 6 years questioning myself for having made parenting mistakes
I now see I've done a pretty good job but haven't the confidence of my convictions, I still wonder whether I SHOULD give up my job as I work 5-8pm (dinner, bath and bed time) Monday to Thursday. I'm reluctant to do so and realise that it may be another reason to question and berate myself. He seems settled with it and we have good Childcare (after lots of changes). In fact, I've always had these wiring hours- since before he was born and throughout.
I too started to realise 'it wasn't my patenting' when I had my DD. My DS was almost 3 at the time. Thank gd for her. Wonderful to have balance. I have to hold in a laugh when people tell me 'She's so good - you're so lucky!'
If only they knew...
I have one like this (standard, easy, love her)
And one like that (eccentric, 'electricity professor', hard work as always has his own mission and so v rarely in line with what he needs to do, love him - what a character)
My story is so similar to trouts I knew at 2yo and the school identified poor social communication at 4yo and I suspected AS. He was referred to Camhs at 8yo and awaiting official dx process ATM - he's now 9yo.
DD is 15 and was diagnosed 2 years ago following a long period of bullying, depression etc. Diagnosis and subsequent support/counselling from school and other establishments was a HUGE relief for us all.
Unfortunately with GCSE time fast approaching all her niggling anxieties are starting to surface. She has no worries, academically (predicted all A*/A's). Her focus is now on what happens if she is ill, where does she go, what happens if the bus is late etc. etc.
DH and I are just gritting our teeth, giving her constant reassurance and reminding school that she needs clear, concise instructions as to what happens in all eventualities!
Like GoodnessKnows we have received nothing but kindness and helpfulness from those we have contact with.
Schools - can be good, can be not as good. But at least you will know more about what to ask for. I have known boys with this diagnosis go through very selective private schools, on to University and even on to marriage (admittedly with another eccentric person).
Your job - routine is good, a break is necessary. What good would you giving it up do? If it causes you more stress than relief, then think about giving it up.
Prejudice - there may be some, but it is far less than being labelled as "disruptive" "naughty" "badly parented" "manipulative" or whatever.
Guilt goes with being a parent. I have parented differently since my DD was diagnosed, it is such a relief not to have to try to force her to be "like everyone else".
Goodness... It is a difficult time.. A real roller coaster ...Cut yourself some slack :-)
I can remember being overwhelmed with what I 'did not know' about asd/ Aspergers.... But I realised that I WAS the only expert on my particular boy.:-)
I will be ok- your boy. He will get there . Lol- I still say this to myself and ds is still ok and still getting there !
Schools vary hugely...and teachers do too. A dx means a signpost is always in place to help give them guidance no matter who is teaching.
Is he lonely? does he FEEL lonely? Or do you look at him and think he is lonely ? Ds has few 'friends' ... And those he has are very similar 'quirky' boys he met at secondary . They seem to have a vague loyalty but expect very little from each other. .He is not lonely ... He has no need to have friends like his sister does. He is very happy in his own skin.
Ds had a bit of bullying at primary... None at secondary. He's always had a very dry sense of humour...and a grown up manner. He's constant ... And his peers seem to appreciate that.
Your boy sounds great fun :-)
goodness I said something along the lines of there is this thing called Aspergers and some children with Aspergers hate loud noises and find school really difficult. Ds said "oh I've got that then"!. I had already told him about his ADHD dx (although that is now in doubt) and I did that just one quiet time when we were having a cuddle. I just said everyone is different and some children are born with ADHD which means xyz. He took it okay but was quite chaotic for a week after, I think it was settling in . One thing that really helped was a kids guide to ADHD which ds read in his own time and then came to me with questions. If your ds is a good reader then I would buy a couple of books, show them to him and let him read them in his own time. I made sure I was around ds when he read, so I could support him.
I sort of calibrate what I tell people depending on my instinct. So some school mums know the whole lot, others I say he finds noisy situations difficult, or he can act younger than his age sometimes, or he doesn't always get the rules.... it sort of depends. I am quite mindful of his privacy. It is a difficult balance,when he was first dx I was more open because I was sort of relieved I think to have a reason that he behaves as he does' but tbh you do develop a tougher skin I think.
One last thing and then I'll shut up . I am struggling with work too atm as the penny has just dropped that ds has more meltdowns on after school club days. But he actually really likes it as he is quite sociable, and I really don't want to give up my career. So am about to talk to dh about him doing a pick up a week. This Is hard and unfurls over time. Keep posting xx
Levantine, I can just 'see' that unraveling for me/ us, too. It'd be so sad as I love my job. Healthy-wise for me, it's not really possible to teach in schools full or part time any more either.
Youarewinning, was your DS slow to develop speech or poor at communicating in terms of turn-taking, eye contact, etc.
I hope that you get a good diagnosis that helps you both / all!
Sidney, what a very difficult time for your DD. I'm so glad that she has such support and hope she's finding relief in your reassurance. Such unavoidable and inherently anxious times in life are so difficult for children with AS. I'm only just learning about it (despite having taught for over 20 years and being a dyslexia teacher.
And I still don't know the MN acronyms. Why is 'DX' used for diagnosis? Lol
PLEASE DINT BE OFFENDED OR IRRITATED BY MY MYRIAD OF INDIVIDUAL MESSAGES. I HAVE A TERRIBLE MEMORY FOLLOWING RECENT MAJOR SURGERY. Sorry if I address the wrong person with a comment.
Mummytime, you're so right.
With my job, I winder whether it'd be less stressful for HIM if I didn't work 5-8. Problem is, I love what I do and selfishly need to do it for many reasons - I think I'd get depressed if not (awful-mummy admission). Then I'd be a Ratty Mum. But it's so selfish. I don't know. He's happy in the evenings. I'm here if he needs me. It's good with the right child care but we've been rough A LOT of babysitters and au pairs.
Trout, he's lonely
He wants to organise and be in charge (in a charming way). Others want to play together. Bit sad but I'm trying to create play date opportunities.
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