Parents of children with adhd - some questions

[YouSurname]

I'm just wondering, and I know that kids are all different etc, but:

Have you gone down the medication route? If so, just school, or at home as well?

Which people know about your child's adhd - your wider family, friends of theirs, friends of yours, club leaders?

Did you make a claim for DLA? If so, why, and did you get it?

Did you request assessment for a Statement? If so, why, and did you get it?

We've just got a diagnosis of adhd for ds2 (after years of wondering), and just trying to find out other people's experiences of how things have panned out. CAMHS have basically said that they can do drugs if that's what we decide to do, but aside from that, we're on our own. DS is 10 btw.

DS1 (11) has ADHD and ASD.

Yes, he is medicated. He takes atomoxetine, so is medicate 24 hours a day. He needs it and hates the way he feels without it.

Anyone who has to spend a significant amount of time with him knows about it.

Yes we get DLA for him.

And he's had a statement since he started reception. This pre-dates his ADHD diagnosis. He's now in a specialist SEBD school.

relative very like our above except the medication made him quite dark-humoured, pulling wings off flies and chopping the tail off the school gerbil who was staying for half term.

That was ritalin and a while ago, so hoping the medicine helps.

Indie special school, and he is now thriving at college, and is able to self-regulate. Could well get a job in carpentry or bushcraft.

Everything to play for

DS1, also 10-diagnosed with Aspergers just before 5, and received further DX of ADHD inattentive (basically add but they don't formally DX add any more apparently) at the end of last year.

Yes he is now medicated. But the initial trial of the stimulant ADHD meds methylphenidate (medikinet was the brand name) was a disaster. Awful. He couldn't sleep, was miserably hormonal and volatile, and the attention deficit issues at school (we don't really have issues at home) got a lot worse. So like a pp's DS he is now on atomoxetine which is non-stimulant and has a cumulative effect. So far, so good, although according to paed we won't see real benefits until he's been on it 8-12 weeks.

Who knows- basically we tell people on a need to know basis. So clubs, scout leaders, family and friends we are close enough to to discuss these things.

DLA-no. Couldn't justify it. DS is cognitively very high functioning, attends mainstream school and copes well. Has never had or required 1:1. Is pretty much as independent as any other 10yo I know and every report he's ever had contains a sentence along the lines of 'self help skills are age appropriate.'

Statement - no. We have never applied. Currently on school action plus which is about to become SEN support. Has been well supported through primary school, is happy at school, has a good little group of like-minded mates (several with similar diagnoses). Is on track for high 4s and 5s in the Y6 SATS. So no need for statement as far as we can see for the moment but obviously with secondary looming fast on the horizon we may need to think again if the need arises.

dd is 8, with inattentive type ADHD.

We haven't seriously considered medication. I wouldn't rule it out if there's something she wants to achieve that could be easier to do with medication, but that hasn't happened yet. She doesn't go to school so there's no one pushing her to have to sit and concentrate. Her behaviour is easy to accommodate.

I haven't mentioned this particular diagnosis to many people. Everybody can see she is "different" but there are various aspects to that, so people tend to see the whole child rather than taking an interest in the diagnoses. If somebody suggests that she could join in some activity which would require sustained focus, I usually just say "I doubt she would sit through that" or "she has a very short attention span".

She does receive DLA, which was awarded some time ago for unrelated issues which loomed larger.

She hasn't needed a statement as she is home educated. She'll definitely need one (or rather, Education Healthcare thingy) if she ever goes to school.

16 year old ds has HFA and ADHD (diagnosed in that order. He's been taking medication since he was 10, we have no breaks because he needs it all the time and attends weekend activities that require focus and attention - it would be madness to send him unmedicated. He takes atomoxetine and methylphenidate.

He is home educated so his week isn't split 5:2 as it would be if he was in school. Some of his education takes place at the weekend so he needs to be functional seven days a week.

Most people know of his diagnoses, especially group leaders for activities he attends. You usually have to declare any medical conditions anyway for everyone's best interests. Family and friends all aware and mostly supportive.

We claimed DLA before ds was formally diagnosed with ASD at age 7. Some would argue that he no longer 'needs' it but he still has considerable problems that need a lot of time and attention, so I think that justifies the claim.

I applied for (and got) a statement after he'd been out of school for four years. I'd requested statutory assessment twice while he was in school and was refused, so he got no meaningful help (which accelerated our decision to HE). My LA was a pathfinder so we converted straight away to EHCP and that was finalised in December. He doesn't get much in the way of support but it means his needs and history are documented for official purposes, and taken seriously because of the LA letterhead.

Thank you so much, reading your replies has been very helpful.
DS only has adhd (not asd as well etc), and my thoughts are yes to medication, but no to DLA and Statement, as while life can be tough, I don't feel he warrants that sort of level of 'support' for want of a better word.
As for telling people, I am undecided. Adhd seems like such a judgement somehow, or like it's an excuse. While it might help in some ways/in some places, I can't help but to think for others it will bring negative judgements to bear on him, and once 'out' can't be retracted.
Ho hum. It's not flipping easy is it? The little bugger just wants to be like his friends and for people to like him , he'd rather he wasn't different at all.

If you don't like the idea of telling people that your son has ADHD, what about just describing whatever aspects of ADHD are relevant to the situation? For instance:

"He's easily distracted so please keep a close eye on him near the road" or "He has a tendency to be impulsive; I'm sure he didn't mean to hurt your child and he always feels awful about hurting someone accidentally."

Could that work? What sort of situations are you thinking of?

Look out for secondary school where it is much noisier and there are far more distractions, Look early and look often at the options in your area.

Some will be good at meeting his needs, some will be awkward and condemning. Speak to the SENCo and other teachers about their experience and how they manage.

If they get stuck in a groove of detentions and temporary exclusions for things that are not the fault of their ADHD kids, then it is time to be in another school.

I did hear that Forest Schools and bushcraft are brilliant for ADHD kids, as their 'disability' is a positive advantage in that environment. I can see if I can find you a link, if your son would be into cooking over a fire in a wood etc.

Our classroom environment and its expectations may make a bunch of kids who could operate in many mainstream work places into kids with special educational needs.

In the long term, the answer maybe to make the learning environment more varied so that different learning profiles had their chance to star.

In the meantime, there is nothing 'wrong' with your DS. He just ahppens to be in a minority which means it is harder to meet the expectaions of people who are too ignorant to encompass kids a bit off the bulk of mainstream kids, or bog-standard kids, as I prefer to cal them.

He will have his niche in the long run and do many amazing and wonderful things.