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Feel like I've left it far too long for dx - where do we go from here?

(11 Posts)
rainingcatsandsprogs Mon 08-Apr-13 17:17:50

Don't want to drip feed anything but honestly don't think it's possible to fit everything I'm thinking in one post so sorry if I do! Basically I've known for a few years that DD's a little more 'individual' than other kids and have worked around it and tried to help her with her issues because I thought it was best not to 'label' her and thought I could help her by myself. It's come to a bit of a head now, we've started the (long by the sounds of it) road to having her assessed/dx'ed and the best guess at the moment is that she has sensory integration problems. We've had an assessment from CAMHS who referred us to an OT (still waiting just to hear how long the waiting list will be let alone when an appt will be) and having some help from a family support worker (starting a non-specific 'additional needs' support group tommorrow). But some things are whirring round my head, would love answers but any response/advice welcome!

1) How massively have I f-ed up leaving it so long? DD is nearly 10 and the isues have been getting progressively worse since she was about 5 and I don't know now where to start helping her, I feel like I was just about 'juggling' everything and now feel like I've dropped it all and suddenly haven't got a clue what to do. She'll be starting secondary school in less than 18 months and I hate to sound like I want to 'fix' her but I'm really worried how she'll cope there, whether we've got enough time to help her before then. She's HE'd at the moment but because she had so many problems at school, not least with the kids being horrible to her because of her problems.

2) How to deal with family in this 'limbo' time before being assessed? The family issue is really what's broken the camel's back for me and pushed me to get an assessment, because they're being so unreasonable about tolerating/helping with dd's issues - they act like she's a pain and if we just put our foot down/parented better/smacked her everything would be ok. I don't want to bandy about the SID label in case it's not applicable but they won't accept she's 'different' and they ought to put up with it, but frustratingly I know a 'label' would suddenly make them much more tolerant. Their frustration/lack of tolerance is getting much worse (or more obvious) as she gets older and the issues are more obvious (less easy for us to 'cover') and she's noticing more and taking it more to heart. I want to put my foot down and tell them to be more tolerant or not bother seeing us but I'm not sure how to when they can't understand that it's not bad behaviour without a label.

3) How (and when) do I tell DD about the possible dx? I don't feel I can leave it until the assessment because the support group we're going to will involve her and I know she'll pick stuff up, but again I can't give a 'label' when I don't know if there'll be one or what it will be. She feels bad already that she's different but I've always 'covered' saying it's ok so I don't know how to 'be honest' and talk about her issues being 'issues' with her now without making her feel worse about them.

4) Do I stick with the idea of the issues being sensory problems (both my gut feeling and CAMHS worker agreed that was the 'right road to go down' in her opinion) and try and research/find out how to help dd now (especially if assessment will be ages away) or just wait? Feel like I should instantly find out how to do everything 'right' seeing as I feel I've been doing it wrong for so long.

5) How do I cope with feeling so tired of dealing with dd, so guilty about not having her assessed for so long, so guilty about having her assessed now in case she hates being labelled, frustrated with family, upset at not having an 'NT' child (I know how horrible that is to think but it's true - I love dd with all my heart but part of me wishes she was the 'same as everyone else') and so lost about what to do?

Sorry for the essay, I'm not even sure now if I need advice or just a rest but thanks if you got to the end!

rainingcatsandsprogs Mon 08-Apr-13 17:18:41

Oh and to top it all off I feel bad asking for advice here because 'it could be worse' and I feel like I'm whining about nothing blush

Ineedmorepatience Mon 08-Apr-13 19:37:53

Hi raining love the name grin

My Dd3 had Asd she was diagnosed when she was 9, for us it has been very positive, she is in a lovely school now and like you Dd is heading for secondary in sept 14.

Dont feel like you shouldnt be here you are not whining about nothing, you must have concerns or you wouldnt be here! I am convinced that you should go with your gut instinct when it comes to your children and to be fair most outspoken relatives are talking out of their arses hatsgrin

I had the problem of not knowing what to say to my Dd3 too but in the end we just said she was going to the clinic and lots of people go. It was tricky but the MH worker that we saw at CAMHS was really good with her and actually she wasnt really involved much in the process. She was diagnosed using a DISCO assessment which is a madly long questionairre.

One of the best bits of advice I was given was again from CAMHS and it was to treat her as if she had Asd while she was being assessed because it couldnt possibly do any harm and it might help. Actually it did help and it started to make a difference to our lives straight away.

The other best bit of advice was from someone on here, that was to keep a diary of all her issues/quirks, what caused them and how I dealt with them. It really made the proffs sit up and take notice when I showed it to them.

Good lucksmile

rainingcatsandsprogs Mon 08-Apr-13 20:14:10

Thanks Ineedmorepatience - though I think I should have your name really grin (I don't even have lots of sprogs despite the name, just had been at a wedding before choosing my name and been surrounded by them).

Thanks for the reassurance - I've been fairly vague with dd so far, like saying we're going to a group where kids that find things like X and Y hard like she does, just didn't know whether to be more explicit or if making it about the issues would make it worse for her.

Makes sense to start acting as if it definitely is SID because otherwise I feel completely helpless until we've got a yes or no, at least that way I can do something. Will start keeping a diary too, thinking about it that would help me so much - with the CAMHS assessment she asked me what dd's issues were and I laughed at first, didn't know where to start and felt very muddled with how much there was - a diary would definitely help, especially if I've got in there the amount I do to accommodate/'cover' the issues. Thanks for the help.

rainingcatsandsprogs Tue 09-Apr-13 16:04:52

What a difference a day makes - feeling more positive today and more resolute. Went to the additional needs support group with DD and DP and it was such a relief to feel 'normal' in not being normal. No-one giving sideways glances to dd and then looking back at me with condescension or pity. No-one commenting in that special voice that "DD is very energetic isn't she" or giving me parenting advice.

Everyone there was very welcoming but didn't seem to give a stuff what was 'wrong' with dd - and I mean that as a very good thing, everyone else I know either brushes any concerns of mine off or asks millions of questions about what's 'wrong' and tells me about their sister/cousin/hairdresser who was like dd but grew out of it/had a good smack and was fine in the end. Was also wondering if I'd feel a bit of a sham with no dx but felt very comfortable and included.

DD had loads of fun with the other kids as they weren't surprised she 'was weird' and I wasn't feeling awkward when she boomed over the top of everyone else. Don't expect one good session to even start to solve everything but it's certainly helped so far. Just wish there was a group every other day now!

Flappingandflying Tue 09-Apr-13 17:05:55

Can you afford a private assessment? I think you'd need an ed psych/ clinical psychologist and an OT? Does she need speech and language as well? I just ask because Flyingboy waited eighteen months for nhs OT. Got given 8 sessions then signed off. Given that he is very very duyspraxic it was a bit poor really. I paid for a private OT and it was te best five hundred quid ever. He's had OT and physio provided by his school since.

I know what you mean about the family and those shitty little comments from people. I remember a patronising bitch of a receptionist at te eye clinic grrrrrrrrr. Do social stories work with your daughter. Also really recommend cranial osteopathy.

Ineedmorepatience Tue 09-Apr-13 17:19:26

Glad you had a good time at the support group smile. Dd3 and I get a lot out of the one we go to to for similar reasons. No pressure to fit in and no judgemental parents.

Good luck with the diarysmile

rainingcatsandsprogs Tue 09-Apr-13 19:14:09

Flapping - there's no way we could afford one at the moment, especially as our location means we'd have to travel about 100 miles to the nearest one I've found that specialises in SI but we're planning to move this year and hopefully I'll be going back to work so might have better access to OT's and might be able to afford a private one in a few months. Can I be nosy and ask how/why you got OT & physio in school - ie was it because you'd had the private OT, did they recommend that school provide that or would school have done it anyway even if you hadn't had private OT? Is it an LA type thing that you would have been able to access in any school or something that particular school sorted out? Sorry for all the questions, am expecting to need to be as prepared as possible, mostly for secondary school, and find out the best way to access that kind of support if/when needed.

Thanks Ineedmorepatience, I knew the 'not fitting in' was wearing me down but didn't realise anywhere near how much until today when we didn't have to. Tbh I came home and had a nap for an hour because I felt like I'd just had a massive weight lifted and was worn out! Have started the diary too, can already see how much there is and I'm resisting the urge to kick myself for leaving it so long.

rainingcatsandsprogs Tue 09-Apr-13 19:18:11

Sorry Flapping, missed off replying to half your post! It's amazing how the comments grind me down more than dealing with dd's issues - one family member saw a very minor meltdown of dd's when we were out and stormed off saying "this is ridiculous" - it's the closest I've come to wanting to kick someone in the face. Not sure what social stories are? And will look into cranial osteopathy, have heard about it for birth trauma but not for older kids, will google!

Flappingandflying Tue 09-Apr-13 20:12:36

Hi sprogs (love your name!). Flyingboy got a statement very early on because he was so revolting in Reception that they had to give him full on one to one. We then went for an independent special school place which we had to fightthe LEA for hence commisioning the reports. The school has on site OT and speech and lanngiage therapy and he had individual sessions of both. His speech now is amazing. He is so articulate it takes my breath away. He can now walk in a straight line which he could never do before.

Another therapy is behavioural optometry which also can really have a powerful impact. We paid for this but it helped him. Some people swear blind by body brushing for sensory stuff but not sure as not done it. Flyingboy had mahussive tantrums for years so I feel your pain. I also think that people are more tolerant of boys than girls. Boys are tolerated, its almost expected for them to be socially inept and boisterous and loud wheras girls are supposed to sit quietly colouring in. I had the problem that flyingboy hated football and sports involving throwing, catching, team. Type things. You discover a lot of people can't get their heads round this.

Social stories are stories that explain simply social norms. Google for examples. They might well work. What I also found work was prerehearsing things before hand so. 'We are goingto x house. What are you going to say when we first go in? What are you not going to do? What are you going to do if..... Happens. When i say we are leaving, what are you going to do?

NoHaudinMaWheest Tue 09-Apr-13 20:14:37

The advice you've had from others is good so I won't repeat it but I did just want to say not to beat yourself up about leaving the dx process until now. Like you I was aware from about 3 that Ds was different but was happy to accommodate it as 'we don't all have to be the same'. As he got older the problems became more obvious and some people did hint at ASD but I was still unsure about pursuing it. When he was 9 he developed OCD which triggered an ASD assessment and he was diagnosed with Asperger's at 10.
You can only do what seems best at the time with the knowledge you have. Also it is not too late. Diagnosis at 10 still gave us time to sort out a good secondary placement for Ds. He is now 16, about to sit GCSEs and, although not problem free, doing very well on the whole.

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