what now? possible SPD 3yo DS

[NiceCupOfTeaAndASitDown]

hi, I posted a while back about my DS, I have suspected something wasn't quite 'right' with him for some time. after stumbling on a book called 'understanding your child's sensory signals' - all signs point towards sensory processing issues/disorder.

I had a meeting with my HV a couple of weeks ago..she read my list of over 50 'symptoms' - behaviours that DS exhibits, I'd asked her if it would be possible to have a referral to an OT for assessment. she has given me a leaflet (understanding sensory behaviour or similar) which further convinces me and has helped me identify that he struggles with self-regulation, particularly with his auditory, vestibular and proprioceptive senses and seems to be under and over responsive to his tactile sense at different times (please bare with me if I'm not making much sense, it's all very new to me and I'm still trying to understand) - she basically told me that SPD is not recognised as a stand alone condition in the UK so unless it's causing real difficulty in day to day life (it is and I told her this) or he's a danger to himself or others (he's becoming so) they wouldn't do anything at present and I should wait until he starts nursery in April 'to see if they notice anything'.

so now I'm really clueless about what to do - and starting to look for other signs that something else is present - ASD or ADHD or similar but I don't really know what I'm looking for. I don't want to worry unnecessarily or label him but he's becoming increasingly distressed and difficult (he's 3 I do expect this somewhat) and I feel completely clueless and alone. I don't want to wait for him to struggle at school if there's issues, this is why I was looking for an assessment, I just want to know if there's something to worry about and to understand him and help him live a full life.

any idea what I should do next? I don't want to 'go behind her back' but I am wondering if our GP might be more helpful. are there other things I should be looking for? I do notice other things -repetitive questions, doesn't understand pointing, anxiety, horrific and frequent tantrums etc, but because nobody else is picking up on things I wonder if it's me (I do suffer with anxiety) but also I think they could just be a 'side' effect

any help would be greatly appreciated, I'm a bit lost at this point

[Hanginginthere123]

We were in similar situation with our HV. In the end I did go to my GP and ask for a referral to a Paediatrician and it was the best route in.

[Jacksterbear]

My ds has a stand-alone dx of SPD (both privately and NHS), given before he was subsequently given an ASD dx (privately). It can very much be a stand-alone condition, and it can also cause emotional and behavioural problems such as anxiety, if not addressed (he was originally dxed with SPD plus anxiety).

If you haven't already, have a look at both "The Out of Sync Child" and "The Out of Sync Child has fun" - the latter has lots of suggestions for sensory activities which will help him be better regulated.

I agree with suggestions to go to GP and ask for referral. A developmental paed would in turn be able to refer you to OT services.

[Jacksterbear]

Oh and re the wording of the dx - agree with Polter that it can differ but that they all refer to the same thing.

Ds' report from private paed says "sensory processing disorder"; report from NHS paed says "sensory integration difficulties".

OT report says "sensory processing difficulties" and lists them in detail; report from psychologist team who dxed him with ASD says "sensory differences".

[NiceCupOfTeaAndASitDown]

gosh it all sounds so complicated! I wonder why professionals are so reluctant to give a diagnosis of sensory processing disorder...is it a financial issue I wonder?

I've been keeping notes and a diary where possible (and linking it to the 'signals' such as 'fear of wind' 'covers ears/runs at sudden noises) but it's so hard to find the time to write stuff down but also to find the words to explain - had 15 screaming tantrums today over seemingly nothing or was a nightmare today unable to stop hitting, grabbing, banging, stomping etc, how do I explain it? I've been videoing him if he does something I find a bit odd but often he just shouts at me or runs off!

I've heard of a developmental paediatricIan but assumed that was for if I had concerns about his development? the only concerns I have physically is he's always been a bit clumsy but looking at the stuff on spacial awareness etc it makes sense. with regard to his speech it's always been great, my only concern there is him repeating/reciting things a lot and what seems to be a slight regression in manners and some of how he talks but I assumed that was an age thing and something he did previously before learning something big like jumping/balancing - perhaps I have got the wrong end of the stick about a developmental paed - it was an OT I asked for referral to..was that wrong?

[NiceCupOfTeaAndASitDown]

oh and I really want to read the out of sync child but I only really get a chance to read books on my phone kindle app and it's not available (it would probably take me a year to finish an actual book) - I have read 'how to grow an in-sync child' though and have been trying some of the activities in there. I've also found the Angie Voss book really helpful for how to steer the 'odd' behaviours once I know what they're about

[NiceCupOfTeaAndASitDown]

thanks goose. what does 'remit' mean? I'm just looking for him to be assessed at this point but it seems I am being talked out of it. it's funny you point out those things because I've only really noticed them as an aside...the not pointing/getting the concept of pointing has always been there, I've just only really picked up on it because I'm looking for a secondary (or more likely main) issue..does that make sense?

[NiceCupOfTeaAndASitDown]

thanks so much those links are great. I've bought the book and the fact files are useful too. a couple of things ring true and there's some good tips in there. I have been reading lots lately about different conditions and Will continue to do so, I expect I'll be an expert in all areas by the time I'm finished! that's the trouble isn't it that all toddlers are a bit odd...I just feel that DS has some oddities that are normal for his age/personality and some which seem to be distressing and I feel they are telling me something only time will tell I guess. thanks so much for all your help

[NiceCupOfTeaAndASitDown]

I didn't mean an 'expert' in all areas I meant have knowledge about all areas even those which don't apply...must sleep!