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AIBU to WANT a diagnosis for ds?(11 Posts)
I feel terrible for feeling like this but i WANT ds (6) to have a diagnosis, i want a label to explain him and an understanding from others, i want to be told im not just a really crap parent and that ds is not just a really naughty, undisiplined child. I know that sounds horrible that i would want him to be given something that he will carry for the rest of his life what kind of mother does that make me? We know he had some sensory issues but there is nothing formal or a diagnosis. Family dont see any problem with ds other than im not socialising him enough or letting him be a boy and all children have habits and know how to play their parents. School dont have any issues as hes generally behaved and academically fine except talking and fidgeting.
But for me its hell, i want a reason for why i cant take him anywhere on my own as he runs off, grabs everything, is cheeky tries to take control of everything. He looks to others as naughty, attention seeking and spoilt he wants everything he sees. I want a reason for why i cant visit friends as he just WONT stop climbing all over them, begging for food,complaining, commanding all attention so that i cant even have a conversation. I want to know how other parents can take their 6 year olds to the cinema or on buses or to museams or for lunch etc the idea for us is laughable! I want to know why we cant do things as a family like to a shopping centre or walk down a busy street as he just goes wild, hyper is not the word and makes me so uneasy. I want to understand why he asks how long to lunch, dinner and what are we having 20 times a day. Why at school he can come home with stickers because hes behaved well with certificates from class for good behaviour and as soon as he gets in he starts playing up or laughing hysterically for no reason and why the same reward plans dont work at all at home. I dont understand how the world seems to have to revolve around him CONSTANTLY he has to command everything, hes never just calm and well 'normal' all i hear all day is big exzagerated "im hungry, ahh to cold, too hot, THIRSTY!" he has zero patience. I want to know why he frequently looks awkward hands bent at the wrist, walking on tip toes usually toungue hanging out walking up and down the room and why he finds it so hysterically funny when i ask about it.
I could go on but i'll stop now maybe i AM just not very good at this parenting thing, i feel totally unconnected from him, sometimes i hear other mums talking to their sons of the same age in supermarkets etc and it almost brings me to tears how normally they have a conversation about normal things, ds seems to have a really poor understanding and is really hard to have a conversation with he just asks questions back at you or barks 'what' and never really gets the point hes only happy to have a conversation when HE wants to you about his day.
Ds is getting referred to CAMHS after i spoke to my gp but who knows how long that will take, i dont think he will be diagnosed with anything either as he can appear just fine, well he must if school dont have a problem and hes there all day, im soooo exhausted, hes mentally draining and i just feel useless
Hi exterminate and welcome to the board.
No, I dont think you are unreasonable to want answers to your questions.
No one on here could tell you what is going on with your Ds but there are a number of us who have children who hide their issues at school and explode at home.
School is very structured with lots of visual reminders about what is expected of children. My Dd3 very rarely shows the real her at school and just occasionally the staff get a glimpse of what I see everyday.
Hiding behaviours at school is very tiring though and often children are about ready to burst when they come home. This is why parents sometimes get all the challenging behaviour.
I would totally recommend keeping a diary between now and going to CAMHS, make a note of all issues/unusual behaviours, what caused them [if you know] and how you dealt with them. This will show that you are being consistant and also what you are up against every day.
If you can video him doing quirky stuff like flapping and tiptoe walking, then do it.What you need is evidence to help you with your explanation of what is going on.
Keep coming on here for advice and support and good luck
I don't have much advice to offer but I can't bear to see posts like this left unanswered.
Dd is very similar in many ways in that I can't let her out of my sight as she tends to run off. We've been invited to a party of a good friends son in a soft play place and I've had to say no as she just does her own thing and I again can't take my eyes off her. Just too hard and I copped out.
It's good he's being referred to cahms, have you seen a paed at all? Does the school have a senco you could have a chat with and mention your concerns about him? It may be that he's holding it all in at school and then letting rip when he gets home iyswim.
Please don't doubt your parenting, a child with "challenging behaviours" as some might say, is really bloody hard. You are obviously a good mother to be worried in the first place.
Of course you're not being unreasonable, I agree with everything Ineedalife advises too. Your post really reminds me of myself before DS2 (8, Aspergers) got his diagnosis. Having had DS1 (NT) first, I guess I was able to feel a bit less guilty that it was all my fault somehow, but it's very natural to question your own parenting even though you know there's more to it. Don't give up with the GP, keep pushing to get your points across. I remember the devastation of finally getting a CAMHs appointment, then after about an hour of explaining everything to the paed, she snapped her book shut and said she'd see us again in 6 months! . I think my bursting into tears made her realise that was not an option!
All I would say is, do as much research in the meantime as you can, there are lots of very knowledgeable people on here who are always willing and able to advise, listen or sympathise if you need a rant , and the NAS website is good for leaftlets etc too (many of them are free).
YANBU, of course not. Scrape together what money you can and get a private Educational Psychology assessment. It's not right what you are going through, and it's certainly not fair on him to be unable to settle and enjoy his life.
You are not alone! My own personal experience was quite similar in that I wanted answers! I think we all do. The fact is the answers will not change your child but they may give you some help and in turn your DC! IME those parents who've struggled to parent their children ( like me and through no fault of ours or theirs!) are the ones who WANT a diagnosis. A friend of mine has an 8 year old and she was devastated when told at 2 he dad ASD. However now she says she's had it easy compared with what we've been through.
One psychologist sad to me that it's totally our choice and if it feels right for him then we should pursue no matter what.
TBH I'm still having an uphill battle at school. If anything diagnosis simply gives me some sanity and justification for demanding services for him. These kind of disabilities are called hidden disabilities for a reason and our kids are good at hiding their anxieties. In addition to that there is a lof of ignorance out there.
When we were in the process of getting diagnosis for DS1 I had a friend who kept going on about why would want him to have a 'label'.... My attitude was that if he has a condition (or disability, or neurological difference or whatever) then having it identified and 'labelled' would mean that he could get appropriate help when he needed it - he has autism, he knows he has autism, I don't see it as anything to be ashamed of. Personally I have found getting a formal diagnosis to be a huge relief from the guilt of feeling that it must be my parenting that had made him how he is, especially as he is very very well behaved (if a little quirky) at school and sometimes b****y difficult to deal with at home. We don't get much extra support now he has diagnosis (although we know get DLA) but it has meant that school at least have some pointers as to how best to help him, and I have found it much easier to stay calm with his more annoying behaviours, and to feel confident about putting strategies in place to help.
We weren't sure whether he would get diagnosis, the first doctor from psychology who saw him didn't think he would fit ASD diagnosis but when we went through the whole process that was the result. It did take a long time but for us it was definitely worth it.
It's not about 'giving him something that he will carry for the rest of his life' - it's finding out if that something is already there as part of him, figuring out what it is, and helping him to find the best way of carrying it. But I think that can be hard for other people to understand, especially as they don't see the extra work you have ot put to maintain the appearance of normality.
Not at all unreasonable. Dx is for the whole family because you are all affected.
The not-knowing can paralyse you and undermine your confidence, leads to inconsistencies and general unhappiness all round. I'm a v pragmatic person anyway and will always face the hard stuff to ensure an easier long term outcome. But I know it's perfectly natural for parents to stick their heads in the sand and struggle on in a rut of avoidance. Parents with SN kids need v thick skins and pushing for DX is not something you should let people get to you about. they don't have to live in your shoes.
We are awaiting assessment for DS2 next month, I'm 100pc sure he has PDA (have you looked at that OP?). He is 4 and behaves at times like a truly traumatised child with horrendous abuse or neglect history when there is no such thing. Having a delightful NT and equally pleasant Aspie child already, I am confident it's not my parenting but I feel I need some sort of written proof, even though school are backing me up totally. Most morning school runs it looks like I am kidnapping him. Jjust waiting for his language to develop enough to start denouncing me as something awful in public.
Sorry i'am just getting back to this i really appreciate all the replies and thank you all for not judging me. I suppose i just want to know once and for all is it just him, is it me, or is there real issues going on.
Silkstalkings - ive just read up on PDA and yes that all sounds like ds but then over the last few years ive read up on autism, aspergers, pdd, adhd and see bits of ds in all of them its so confusing.
His behaviour can be unpredictable for eg, hes never got a problem with changing things last minute etc but other other night he was messing about with his reading homework not trying and laughing for no reason as per so i stopped it and put it away and he went crazy! screaming, shouting, crying because the book hadnt been finished went on for ages eventually had to continue it to get him to calm down. He is starting to get quite aggressive as well, hes always randomly punching you when hes excited (i know hes just trying to play), he thinks if you say something silly or say stick your tounge out joking then hes got permission to start play fighting with you and jumping on you, he said he was going to stab me with his pencil earlier he just dosnt think, i hope thats something he grows out of.
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