Posting for traffic - ADHD Diagnosis and "after care"?

[Mammabear31]

Posted on the SEN board but didn't get any responses

We have a meeting with DS's (6) consultant tomorrow. He's had a QB test and both we and the school have had to complete further paperwork. He has also been referred for an ADOS assessment but the waiting list is currently 12-18 months.

If we do have a an adhd diagnosis tomorrow, what should we expect with regards to support? I hate not knowing what is going on, and am having to go to the appointment alone with DS so I feel the need for some knowledge to try and calm my nerves. Obviously I know that "treatment" can take many forms, however has anyone experienced support for themselves and the wider family (as in me, dad and sibling)? We are struggling with managing his behaviour, will they offer us help with this? We want our son to thrive but we are finding it difficult to determine the difference between a potential condition and normal child behaviour.

Also, has anyone gone through this and been told there is no diagnosis and gone on to appeal? It's obvious to everyone (family, school etc) that he needs extra support but I am worried the consultant will say there is nothing wrong.

www.rcpsych.ac.uk/mental-health/parents-and-young-people/information-for-parents-and-carers/attention-deficit-hyperactivity-disorder-and-hyperkinetic-disorder-information-for-parents-carers-and-anyone-working-with-young-people

I have no advice but hoping someone does.

Why are you worried your DS might not have ADHD?

It’s better for him if he’s just going through a difficult phase or is a bit immature for his age and will self correct over time.

If you don’t get a diagnosis you may still be able to access therapy and help. Are you under CAMHS? Once referred into CAMHS they usually have a variety of courses and stuff going on that you can access. In our area that ranges from parent courses in ADHD, to sessions for kids including art therapy, psychiatry, managing emotions, or family therapy. We Have a local ADHD support group too that is worth looking up

One book worth reading is ‘the Explosive Child’ about managing behaviour.

We have had family therapy and also had access to a therapy called ‘the Parent and Child Game’ (google it) which coaches parents with dealing with specific situations with their children; and also brings in siblings too.

We were offered a course on ‘positive behaviour support’ and that’s about it! DS has medication now and sees his consultant every 3 months. Medication had been revolutionary!

@PlanDeRaccordement sorry that came across wrong - what I meant is, the school highlighted issues to us over a year ago and we as a family have concerns, there is obviously something there but we dont know what and to get DS the support he needs, we need a diagnosis. I don't want him to have ADHD. I hope that makes sense? Sorry, I'm tired.

Thank you @Catgotyourbrain, that is really helpful. I'll have a look at the book tomorrow once we know either way. We aren't under CAMH at the moment but I will ask about it tomorrow.

Just because he doesn’t get a diagnosis of ADHD doesn’t mean nothing is wrong. That’s a strange way to look at things.

I’d prefer not to get a diagnosis than get an incorrect one. Trauma, attachment issues etc. are often misdiagnosed as ADHD. Also think carefully about whether you want your child medicated for their behaviour. Parenting courses are often recommended here for ADHD type presentation.

If you get an ADHD diagnosis it is likely your child will be offered medication to see if it helps.

In our area we were also offered parent support classes run by Banardos. I have done one of the courses and will do the second in the new year. To be honest the content didn't tell me anything I didn't already know but it was very helpful to meet and talk to other parents who understand what it is like.

I asked for help with my child's explosive temper and her extreme difficulty in calming down once upset or angry. I was given some print offs which wasn't really what I was hoping for.

You might want to see if you can find any support groups run by parents or look at joining internet support groups. There are some on Facebook.

You need to be under CAMHS. Is it a paediatrician you are seeing? I would make sure you go armed with notes on all the behaviours and what might happen in a typical day: for us this included potential for meltdowns and really difficult behaviour at all transition points during the day - what does DC Do when you wake him up? Ask him to get dressed? Come downstairs? Clean teeth? Eat breakfast? Put his shoes on, etc etc. (For is all of those posed a problem).

You also need to come armed with notes on how this is affecting your child emotionally - because an ADHD diagnosis strictly speaking does not include ‘anxiety’, ‘violence’, ‘lack of social skills’ or OCD and sensory difficulties. In the experience of every parent that ever dealt with ADHD it is in fact odds on likely that the difficulties thrown up by ADHD will cause some of the above. Those Things have their own treatment paths and you should ask about those (not sleeping as he was counting endlessly and afraid of intruders and monsters for instance)

If you are on Facebook, like a page called 'Connect the Dots to ACEs'.

ACES stands for 'Adverse Childhood Experiences - but don't be put off by that, so much of what is posted there applies to children with ADHD too. Some of it is just reminders about the child, and what they are going through.