Where Should We Start Looking for Help?

Hi Giggles. Our kids are very complex and you probably need specialist assessment. You little one might have sensory attachment difficulties and nothing else but the chances are that there is more complexity. With hindsight I would say that I wish we had sought specialist assessments earlier. There are very good reasons why signs and symptoms are different in different environments so don't let this worry you just make sure it's understood by the specialists who use that sort of information to help them get to the bottom of it all when deciding between one potential diagnosis and another.

I love the animation at the link below - the key message is that you need to make sure any therapy or treatment is right for your son's neurodevelopmental level. However from our experience I would also argue that our children are even more complex than this animation suggests because they may have been exposed to drugs or alcohol in utero (so could have FASD, which often goes along with ADHD) and we often don't have a full understanding of mental health conditions they may have inherited or just have in the same way any other child might have them. (The birth parents may have been undiagnosed or just did not disclose or we may not even know who the parents are!) If it looks as though our children might have a known mental health condition (EG ADHD, autism, ODD, OCD) for which there is an evidence based treatment  then even though the symptoms might be the that or attachment related then trying the evidence based treatment for the possible common mental health condition is useful. If it makes no difference then you can stop and go back to treatments mentioned in the animation linked to the relevant level of development. If it does make a difference then go with it but also think about attachment related therapies linked with where they seem to be in terms of development. We found that these worked better once the medications were helping the other stuff. Before the medication the psychological therapies did not work at all.

Having said all that you will not get the required assessments easily. The NHS system is local CAMHS first and so many of us have found that this does more harm than good as they just don't have the expertise. We just paid for it all privately and now have no savings left but at least we know where we are. We have friends who have got their PASW to apply to the ASF for funding for the assessments- this will use all of your allocation under the fair access limits, however you might decide it's worth it. We went for paying for the assessments - to get a quick opinion and strong plan and then applying to the ASF to get funds for the therapy. The medication is available on the NHS once you have a diagnosis so this seemed like the most logical plan for us. 1 of our boys was diagnosed with ADHD and ODD and has responded well to medication and now responds well to sensory attachment therapy. He has very significant sensory seeking behaviours. The other was diagnosed with ADHD and OCD and is older the resistant to starting medication so we are waiting for ASF to get funding for cognitive behavioural therapy for the OCD. He wants executive functioning therapy but ridiculously this is on the list of things the ASF will not fund - we are currently exploring this as it's bonkers!

So the long and short is that there is no easy answer. Get a good assessment early from professionals who understand the complexity.

www.youtube.com/watch?v=FOCTxcaNHeg&feature=share

Thanks for that link Runmum.

Think I'll post it in resources so we don't lose it.

Giggles, my son ‘acts in’ at school, despite an impressive array of diagnoses and really severe issues at home.

The move to Year 1 may have triggered anxiety in your son (and therefore the re-emergence of issues) or it may be that he’s struggling with a more desk-based day (lack of sensory input). Or both.

I agree that some kid of comprehensive assessment would be useful. The ASF provides £2,500 per tax year (from April, I think) for assessments and £5,000 per year for treatment. If you have a PASW already, get them mobilised. That way you can get an assessment and use this FYs treatment money before the new FY starts.

Do some research into private providers in your area. I would have thought, from what you are saying, that your son will need to be assessed for attachment difficulties and sensory processing issues but also perhaps trauma and OCD.

If you don’t yet have a PASW then you need to contact your LA and get the ball rolling.

In the meantime, I would be trying to provide sensory input (swimming, tree climbing, gymnastics, fiddle toys, chew toys, giant bean bags) and calming activities (zonking out in front of the TV, colouring in, jigsaws, play doh and Lego) all help with my boy.

Good luck. It’s horrible when they go ‘backwards’ but the trigger is clear and hopefully that will help with teasing out diagnoses and treatment.