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) beca

[AlwayswinterneverXmas]

Reposted this from behaviour & development, think I should have posted here to start with.

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?

Completely failed on copying the title

Hi Always! I think a lot of us here have felt like you do today, it tough when people don't take us seriously. Not wanting to diagnose myself either, but I do think you're concerns are valid. It's very telling that her problems were severe enough for you to remove her from school...how was she when at school?
Try not to bother with GPs view, at least he has referred you , keep a diary and take it with you , it helps them get a picture of day to day living for you're family.
Good luck and keep posting, I'm sure lots of good advice will follow mine! :)

I would say - from my own experience that very few professional - evan OT's have a good understanding of SPD - DS is sensory seeking, and one OT (not in this country) gave us the name of a pediatrician who would definately prescribe ADHD meds to DS (he was 4 1/2 - 5 at the tome) as he "definately had ADHD"...thank god we didn't go down that road.

Even some pediatricians have no understanding of it. You need a referral to a specialist trained OT, who is qualified to do the SIPT test.

Because we were new to the country we went privately. The place we go is called Hopscotch in London - goggle it, their website has lots of great info, and books/resources.

AWNX - I have a similar situation with my DS. Not sure if he is sensation seeking, has ADHD or is just on the far side of normal iykwim? CAMHS don't want to get involved as he presents issues more at home than school, so they are saying it is about family dynamics. I really don't think it is. Wish I could offer some useful advice

mrslaugham - could you say a little more about your DS? What do you think the differences are between how SPD and ADHD present?

I fear because we have learned how to parent DS well, and he is smart, his difficulties are quite hidden sometimes, and when they do manifest outside home, ascribed to bad behaviour or immaturity, which I don't think is the full picture. I'd really love to hear some words of wisdom .

Go back to your GP and ask for a referral to someone who is able to ascertain for definite, whether your DD's difficulties are intrinsic, extrinsic, or a combination (kids with SPD and/or ADHD are just plain harder to parent, so a parent of average competence has a lot to learn, faced with such a child). This would either be CAMHS or a paediatrician who can coordinate several agencies to carry out an assessment.

I doubt if your GP has the first clue about ADHD, SPD or anything. I know DS1's doesn't. He insisted that DS1 needed sedation when I went to get his antihistamine for hayfever changed because the sedative effect was making him extremely bad tempered and aggressive. I'm hoping not all GPs are as clueless, but it doesn't instil faith in me.

DS also has fine motor dyspraxia.
In busy environments - like school - he just could not focus, yet at home could, would get quite involved with doing jigsaws or imaginary play - that was why I always questioned the ADHD.
The child at school was very diff from the child at home. At school I used to describe him as a fly in the microwave - buzz buzz buzz - until he exploded. The explosion could be complete emotional melt down, or hitting another child, which he always felt very bad about.
He was quite noise sensitive, still is at times.
If we were out with him, at a busy place - like a very busy museum or playground - again he would be like a fly in the microwave, but if we were somewhere, not so many people, not so much stimuli , he would remain calm.
Lots of vestibular winds him up, proprioceptive helps him maintain a calm active state.
Does this help?

Oh and I was told if he had ADHD he would have concentration issues across different situations

Always the list of issues that your DD shows would definitely make me wonder about sensory processing.
A bit like mrslaughan says, I would investigate that before the ADHD as a child with vestibular/prorioceptive issues would have the issues with sitting still, concentration, short term memory.

Have you considered that she may be high functioning on the Autism Spectrum/Asperger's?

Practical steps would be:
Keep a diary of the 'quirky' behaviours that DD shows. Be as detailed as you can. Note how many instructions she can retain if going to another room, and how many it takes for her to ''fail'' the task. Note her social gaffes. Note odd turns of phrase. Her sensory quirks, likes and dislikes.
Does she ever have melt-downs? If so, when and where? If not, is it because you 'manage' her and never let her reach boil point?
If not, is it that she is never that bothered and doesn't notice things that would upset someone else?

Fill out a detailed sensory processing checklist. Educate yourself about SPD.

Again, echoing mrslaughan, get to an appropriately qualified OT. Being qualified to complete the SIPT is the highest level of training in SI but someone who has completed several levels would certainly be able to start you off.

As for the GP, it would not be unusual for one to not be au fait with Sensory Processing Disorder. It's not recognised on the DSM and many CAMHS/CDC/Paediatricians would still be somewhat dubious about it being a true 'diagnosis'.
However, the last 10 years of research in neurology are tending to provide an evidence base for a theory that OT's have spent 40 years seeing functionally.

Hi always and welcome to the board, I was going to say similar to porridge , my Dd3 has a diagnosis of Asd, we tend to say she has Aspergers because she fits that profile. Your list could pretty much describe her if you added in watching the same tv programs and dvd's over and over again.

Having said that there is a massive overlap between many conditions such as SPD, ASD, ADHD, Dyspraxia etc so it could be that your Dd has one or a multiple or mixture of any of them.

Your GP sounds rubbish and rude and he probably knows nothing about living with a child with these issues and he almost certainly wont know anything about HE or why families choose to do it.

Definitely keep a diary and do some reading and make some notes about how your Dd fits the profiles, using real examples where possible. Then either go back to the GP or find another one and insist assertively that he/she refers your Dd either to a developmental paediatrician or to CAMHS.

Good luck

Just echoing the above tbh.
Sounds like you do have reason to be concerned I would definately get the ball rolling on trying to find the rifght person to help.
I say that because my 2 youngest Ds's 3&6 have SPD. my youngest DS with a variety of other 'more noticeable' problems still hasnt been officially diagnosed with SPD, just gets labelled with 'sensory problems' (it took me til he was 8 months old to get anyone to acknowledge he had any problems that needed investigating). Whereas my 6yr old DS got diagnosed with SPD in the summer hols after seeing his dr about PICA (eating non food items). He was eating things since I can remember but it was always 'age appropriate' so got pushed aside by HV & Dr. Ds was about to start school so went back to dr as by then I KNEW it wasnt age appropriate & he just fobbed us off. I spoke to HV who agreed with me and had a stern word with the dr who reluctlantly reffered us to a Paed. To cut a long story short after referal to Cahms and behavioural physc who wouldnt deal with it, Ds was referred to an OT by that time I was very pessimistic but she was fab and immediately said it was SPD (the PICA was seeking stimulation). She also suggested an attention disorder which we are again fighting to get the right person to refer us. I do feel that it is more than just SPD we are dealing with for him.

Definately keep a diary (which I have started doing too) If anything, if the dr/ot/paed suggest it -you have already done it hopefully cutting some waiting time down.
And I definately agree with Ineedmorepatience after reading up on SPD etc there is a very fine line between so many disorders that children are commonly misdiagnosed as the wrong one.
It can be a very hard and difficult road but imo worth it to know how to help our children the best we can.
Good luck

Thanks for all the replies and help - will try to reply to everything, sorry if I miss anyone! DD started off well at school, enjoyed reception/yr 1 but then it went steadily downhill from there. She didn't seem to work out how to socialise with the other kids, found the work either boring or too hard so not worth trying at, lost confidence in herself and thought she couldn't do anything, had loads of problems doing physical stuff (like climbing bars in PE, playing ball games, scared of going up and down stairs) which really marked her out as 'weird' to the other kids and eventually they really cut her off and got nasty towards her. The last couple of end of year reports were horrible, basically said she was academically fine but was a PITA child (to paraphrase) - ie wouldn't socialise well, didn't listen/do the work (wasn't disruptive, just would sit there not working). After the first one I spoke to the teacher and was told they'd support her, try to work on the issues then was told through the next year (Y4) that there were no problems then got a just as damning report at the end so just decided to get her out, I didn't trust the school to support her and she was crying almost every night about how bad school was and how she had no friends.

Will keep a diary, thanks, think it would definitely help to be able to show GP/people what the day-to-day reality is like, so it's harder to brush off.

Thanks for the info about diagnosing SPD, that's one of my fears, that dd will get labelled as ADHD even if she's not because it might be easier, very tempted to 'shortcut' the process and find a private OT, if only to eliminate one possibility, will look into where a nearby one might be and how much. Will look at Hopscotch.

Silvercase - I feel the same way, there's some things I've learnt to 'parent around' so wouldn't be very obvious to other people or come across as dd being 'odd' rather than something really being wrong, hoping if I make more of a point of explaining what I see rather than waiting for someone else to see it it'll show the full picture.

about the sedative ourvye! I didn't expect the GP to know much about SPD but I naively thought he'd take me seriously and refer on but haven't got much faith either now tbh. Any opinions on whether CAMHS or paed would be the best port of call, if I'm asking GP for referral? Makes so much sense about it being harder to parent - I get so frustrated sometimes and I'm sure that just makes it worse, think it would help me so much to know what the 'problem' is so I can learn how to 'parent it' iykwim.

Will have to look up vestibular and propioceptive mrslaughan but I do know dd alone with me can be different from with dp and in other social situations, with some people she'll 'act up' (not my words!) and with others she'll be much more capable of handling the situation.

porridgeLover - I did wonder about asd but somehow thought that she wasn't 'bad enough' to consider it, as if I'd be jumping on the bandwagon of 'more severe' autism but have an open mind, if paed/whoever thought she was high-functioning asd I'd be very grateful for the diagnosis - just want to know what it is and how to deal with it. Thanks for the tips about the diary, will do that.

Not sure whether to wait to see what this children's centre referral amounts to or get back onto GP - could it involve a paed/CAMHS or do you think it be a bit useless?

CAMHS/Paed would depend on your locality. DS1 has ASD and ADHD and started out with the paed, with input from CAMHS, SALT and eventually OT. When he got his ADHD diagnosis age 6, he was transferred completely to CAMHS.

I found the Out of Sync Child books incredibly useful pre-diagnosis. Full of helpful explanations and ideas. He still acts like a pinball in the evenings, but at least we know why!

I'd take the children's centre referral, btw. Regard it as part of your evidence gathering. And yes, they might recommend that further input is needed.