Need to get some advice (re possible adhd or sensory processing disorder) and a bit of a rant!

[AlwayswinterneverXmas]

Not sure where to start but basically for many reasons I think dd (9yo) may have a sensory processing disorder or possibly adhd (or something completely different, am not trying to self diagnose) because there's many issues I'm concerned about with her and doing an spd checklist I was going 'YES, THAT!' at so many things.

Don't want to dripfeed but if I list everything I'll be here all day but the major ones are;

-she's a very (very!) picky eater
-very high energy levels
-racing heartbeat (that has been so bad at times we've had it investigated)
-extreme fear of things like heights/lifts/escalators/theme park rides
-gets very frustrated (esp at things like not being able to do work or someone talking/singing when she doesn't want them to)
-always fidgeting/restless
-gets bored incredibly easily
-still sucks her thumb
-talks too loudly all the time, always chattering
-finds it hard to keep track of what you're saying or instructions (like will go into another room to get something you've asked for then come back having forgotten all about it)
-finds it very hard to concentrate on something (except tv/video games)
-poor social skills
-clumsy
-HATES making any sort of decisions
-never notices if she's thirsty
-can't stick at anything 'boring' (which includes most stuff)

There's definitely something that needs addressing beyond being a typical child and I don't care what it is, even if it comes down to bad parenting, but really need advice on what to do about it all, and if there's a 'label that fits her then it would help to find out what it is.

I've been aware of these issues for a long time but didn't want to go to GP before in case it was brushed off or dd was automatically given a 'label' but as the issues are getting worse not better I think I need some outside advice. Also, I can try and help dd as much as possible but it's getting REALLY frustrating and upsetting that other people (especially family) can't just deal with dd having her own issues, without a 'label' they think she's being awkward/disruptive/putting it on and get really frustrated. Sad as it is I know if I have a 'name' for the issues they'll suddenly start being a lot more helpful.

(now for the rant) Phoned GP to ask about booking an appt to get some advice and got nothing but talking down to! He didn't seem that interested in my concerns, just picked up on the fact dd's currently home educated (because of all the above she had a terrible time at school) and told me in no uncertain terms "well that's just going to disadvantage her for the future isn't it?". He also seemed determined that there must be 'something' going on at home, even when I explained it hadn't come after any big life change, the issues have been there years. He very grudgingly agreed to refer to our local children's centre but in a 'will that make you happy' way. Am fuming, would like to be taken seriously not given some spiel about how bad home education is.

Will take the referral when it comes but knowing our area it could be ages, not sure what to do in the meantime for dd?

Reposted in special needs, wasn't sure where it should go tbh!

This is a tricky one. It sounds as though she could so with an assessment with CAMHS (children and adolescent mental health services) referral usually comes from either GP or school...
First of all I think a complaint to the practice manager into that doctors attitude is in order. It is not appropriate fro him to make any judgements about your child, issues should be assessed by specialists. Then a discussion with another GP, face to face with the list you've given above and a polite request for a CAMHS referral.
Good luck, let us know how you get on.

Thanks for the reply - am very hesitant to complain about him because he's one of the partners and I think the GP who's been there longest (so should know better!) so I feel like I'd get very short shrift if I complained. Will phone and ask to see another GP though - do you know if CAMHS might be involved in the children's centre he said he'd refer us to or would that be something completely different? Just don't want to seem like the neurotic mother asking for the world

The very first thing you need to do is stop worrying about other people's opinion of your parenting. Getting a diagnosis and support for children like your DD isn't easy and people will try to fob you off and blame your parenting throughout the process.

Go to a different GP and state very clearly that you have serious concerns about your DD's neurological development and you would like her to be seen by CAMHS. Don't accept referrals to anywhere else unless they are able to offer neurological developmental assessments. The waiting list will be long but you need to get on it. GPs often decide children don't have ADHD, ASD,SPD, etc for ridiculously uninformed reasons so don't let that happen.

What you need is information. You need to read up on Asperger's Syndrome ( get this book from the library), sensory processing this book) and hopefully someone will be able to recommend one on ADHD.

Also talk to other parents whose children are similar. This site is good for parents of children with ASD and SPD. Look for some on ADHD too.

Arm yourself with as much information as possible and remember that you are the expert in your child.

HTH

How is she at school? does she struggle at all?

Just a thought - do you have access to the school nurse service at all? I'm not sure how that works for home educators. If so you may be able to get a referral to a community paediatrician who can then refer on to CAMHS.

Don't ever be afraid to make complaints about senior partners. It's up to the practice manager to deal with any issues so you don't have to worry about it.

You will have more control and power if you start this process by making everyone aware you are not willing to accept blame. Not a criticism of you at all but Goldmantra is completely right, you will have to face and battle against judgements throughout the process.

Thankyou Goldmandra, hadn't even considered school nurse service, just rang them and they said I'm (well, dd) perfectly entitled to use the service and they've made an appt to see us in 4 weeks, so that's a lot easier than going back to GP - they seem to be taking it seriously as well. They want to see us first, as CAMHS here apparently are very picky because of funding, but she said they'd be happy to refer to CAMHS if appropriate so that's more willing than the GP showed! Definitely agree I need more info, this is completely new to me - will look at the site and get hold of the book. Have been worried about other's people's opinions, especially as I parent differently to the way the rellies would like (apparently if I was into smacking all problems would be sorted ) but need to ditch that.

didldidi - she found school a nightmare by the end, so we've been HE'ing since Sept. Because she was 'different' the other kids were excluding her and making her miserable and the teacher seemed to be getting fed up of her rather than supporting her because she wouldn't be 'normal' and would sit doing no work because she found it boring or too hard.

AccidentalExhibitionist - will definitely complain but will make a complaint in writing, will feel easier about that. Find it very hard not to be critical about my parenting, especially when other people are, but am really working on that - was very pleased with myself because I politely but firmly disagreed with the GP and pointedly explained the reasons for HE'ing and how much I felt dd had been losing at school and how much she was gaining now so hope I made my point to him. Going to work very hard on cultivating the polite version of a 'if you can't tell me something helpful you can eff off' attitude.

It's good news that you can get a direct referral to CAMHS. Ours can't/won't do that.

When you see them you need to ask if they can refer to Occupation Therapy too. It needs to be one who is trained in sensory integration. You may need to wait for CAMHS but it's well worth asking the school nurse.

I now have some stock phrases to use for professionals who think they know my child better than me.

"We didn't take this decision lightly. We understand the pitfalls but on balance we feel it was the right thing to do"

"I know that all children this age can have some of these problems but this is stopping her living a normal life."

"It is important for her to get the support she needs to live a normal life."

"I have tried x, y and z already. I think the support she needs is more complicated than I as a parent can offer."

If you are too open to the idea that her difficulties are the result of bad parenting some people may jump on that bandwagon and just send you on a parenting course. Be clear about what you have already done to try and help her and why those things have not worked. Be willing to trying things they suggest but honest and open if they don't work because this will help with the diagnostic process.

Good luck

She sounds just like my dd right down to the not knowing if she's thirsty! My dd got a dx of ADHD age 6. She struggled immensely at her old school and started picking her skin terribly. We moved her school and she's much better now, though still a hyperactive chatterbox! Good luck