Where can we get advice in the uk

[Clare184]

Hi our son is 9 and we are fairly certain he has adhd. Where is the best place to go for advice and support. We want to be able to help him with dealing with things like the emotional spirals.

I'll do a separate post for any ideas on this I'm sure this forum has tons of experience but husband and I would really like to be able to talk to someone too

[EJ_C]

In the UK you have ADHD-UK

&

Adhd Foundation.

But alot of the US resources are also great like the Aditude Magazine alongside ADHD Dude

Help etc. You'll need to either start by going to your GP and then look at the right to choose options (this will speed things up) with a fairly lengthy wait time I believe.

Or there are the private options. But this will result in any medication being paid for on a private prescription until you can create a share care agreement.

Then with the report, you can then easily obtain an Individual Education Plan which will help outline, additional support needed at school such as interventions on a 1:1 bases with a TA or specialist. -You don't necessarily need a diagnosis to create an IEP. A good school with a bit of a push will create one with good cause.

[Clare184 in reply to EJ_C]

Thanks so much, I'll take a look at those sites. Hoping to avoid medication because he generally manages well its just the emotional spirals that are a struggle. He thankfully is doing great at school because he loves learning and his hyper focus kicks in most of the time, just relationships with friends that can suffer with his emotions not being as they are

[Hidden in reply to Clare184]

Please keep us posted on how he's doing! I went through the same thing with my son last year. Academics has never been an issue, so ADHD did not immediately come to mind when I tried to figure out what could be going on. We had conversations in earnest with his pediatrician last year because his relationships with his friends were suffering to the point that it was distressing to him. I was so surprised to see how much medication helped him feel like he was in control of himself, his emotions, and his behavior. I've come to accept that his brain functions differently and needing medication does not mean anything is wrong with him (or his dad and me). However, if we could find other strategies that are as effective, we'd certainly give them a try!

[Hidden]

NHS CAMHS ADHD pathway waiting lists are very long, some children wait as long as 1-2 years for assessment. Quicker way is to have your child diagnosed with a private paediatric psychiatrist and once you have the diagnosis you yourself can refer your child for something called ‘transfer of care’ to NHS CAMHS ADHD path. For my son from the day I added him on a waiting list (in our area it’s called Integrated Services and I made a referral online stating that I need ADHD path because my child already has a diagnosis and prescribed medication) to the day that he was seen for a first ‘review’ by NHS CAMHS it was 6 months, so it massively cuts the waiting time.

My son has Educational Health Care Plan at school and his ADHD specialist nurse practitioner came to the previous review at school. School was given a handout about ‘what works’ and ‘what doesn’t work’ in term of behavioural interventions with children with ADHD. Why this matters? Because if your child doesn’t have a diagnosis or EHCPlan school will not acknowledge ADHD. School will insist that this is a ‘naughty child’ and will not accept that this is a child who’s frontal lobe in the brain is developed differently and that is why child has poor impulse control and no focus.

However bare in mind, if you are trying to get your child to a private school then it’s easier if the child doesn’t have EHCPlan and of course the diagnosis is confidential and you don’t have to disclose. From my friend’s experience- children with ADHD so much better in a small class, to give you an example when her son was in a state school in a class of 32 children there were days when he was asked out if the class 5 times. She loved him to a private school where he is on a mixed sex class of 8 children and he is thriving. Teacher allows him standing instead of sitting in the class, he is allowed a fidget toy, he gets all the academic attention that he needs (he is super bright, scoring in SATs 120-130). Had he had EHCPlan school would guard themselves and probably not want to take him because there is a lot of stigma attached to ADHD (I noticed people in the UK mix it with ASD and people were asking me ‘Oh, yous son is on medication, I thought autism can’t be treated with medication.’ And then I have to explain that ADHD is something different although many kids with ASD also have ADHD).

Your son’s school should have something called ELSA- in theory staff who runs it should know how to assist a child with ADHD, let’s say anger management strategies etc. In my experience they don’t know much, but it might be different in your child’s school. You may want to ask your ELSA staff or school’s SENCO if they think your child has ADHD. However what I noticed, if the child is mostly ‘inattentive’ type at school, school will not blink. That was the case with my son-he loves school and he was really trying his best in the class to sit and follow instructions and the effects were poor because his focus was so poor and he was using all his strength just to sit there and not move etc. Then he was coming home and he was a mess- anger outbursts, exhausted, not able to participate well in after school sports, refusing to do reading or times tables or anything involving concentration and learning. His school couldn’t care less, because he wasn’t disruptive at school. In between the lines the school was telling me (not in my face but just giving examples of other children etc) that my child is just not so bright and ‘why would you want to do maths with him at home, school is for teaching’ (that’s the words of ELSA staff). And me pointing that my son was over a year behind with maths and that was why I was trying to catch up at home because school doesn’t do it, school was basically implying that it’s his ‘lack of aptitude’. So now we are 2 years into medication (stimulants made my son worse so after 8 months we managed to swap to non stimulants) and my son is catching up with his maths with a home tutor coming weekly to do maths with him. His private tutor says he’s retaining once she explained stuff and by the end of this school year he should be back on track, not behind. So clearly it wasn’t ‘lack of his abilities’ as school in between the lines was trying to tell me, it was untreated ADHD stopping him from focusing and making him refuse any work on maths at home. He was so behind that sitting in the class and doing year 5 maths was like double Dutch to him. His tutor also does a points/rewards chart with him. That’s a behavioural strategy which works well when it’s applied properly. But before he was medicated he wasn’t responding to any rewards systems (area in brain responsible for rewards is often malfunctioning in children with ADHD, basically they have no inner motivation to do stuff they think they don’t like, but equally if they think something is difficult and that they don’t like it, they won’t even do it in return for rewards…). My son’s ADHD specialist nurse practitioner said that the goal would be - 10 minutes because his brain won’t take more and then slowly increasing. My son is perfectly fine doing 30 minutes tuition at 5pm and he is fine, but without medication he wouldn’t be fine. He also does spellings, homework, his 20 minutes reading daily, he will have outburst sometimes (it’s something about my relationship with him, he works better for tutors, teachers etc). It’s still not perfect but we can see the light at the end of the tunnel.