Our grandson’s ADHD rollercoaster

9 October 2024

Penelope’s world turned upside down when she and her husband took on the care of their grandson. Here, with his permission, she tells how Family Action helped them provide stability for him on what could all too often feel like a wild ride. 

We became the carers for our 17-year-old grandson, who has ADHD, about four years ago and, really, we had no idea what it would entail. Helping our grandson involved us stepping into a completely new environment, we had never once talked to a social worker before, for example. And even the language was different. Acronyms like SEND and CAMHS felt like alphabet soup. 

The thing is… we’re grandparents, not parents, and when you’re the parents of younger children you try and buy a house that’s in a nice school area and sort out where they’re going early, but we hadn’t had the chance to do any of that, so he couldn’t go to one of the very local schools.

We didn’t realise we were stepping onto a rollercoaster.

Penelope, grandparent and carer

He came in the August, and he didn’t get a place at a school until October – a month after the term had started – so he was very, very anxious and there were all these feelings relating to whether anyone wanted him. Putting it mildly, things went off track and it was too hard for him to cope with. His earlier environment and educational setting were quite nurturing and now he was mixing with new people and seeing behaviours he’d never seen before – kids, and even parents – fighting in the playground. He couldn’t cope… he couldn’t cope with school at all. 

They tried reducing his timetable from five to three days and having shorter hours but, eventually, it was decided that it wasn’t possible for him to stay at school.  If he was having a bad time in the day, however, it was especially bad at night. We had him climbing out of windows and we were sleeping on the sofa to stop him sneaking out… bear in mind we’re in our 60s and hadn’t parented in 20 years!

We were passed on the details of Family Action’s support group and coffee morning. 

Going to those coffee mornings was invaluable, especially at the very beginning, as it gave us hope

Learning about our grandson’s ADHD

The group gave us reassurance that, if we were on a rollercoaster, then other people were also on the ride, and it wasn’t going to fly off the tracks. We got one-to-one education to understand what ADHD is, and what we could put in place to mitigate and help. We found out about specialists and grants, and we met other parents who helped us realise that there are a lot of other people in the same boat and that, in fact, some were in worse situations than us – people who are single parents, keeping the wolf from the door or who have multiple kids. 

At the end of year 9, they allocated him a place at an alternative provision, which was absolutely fantastic, and was really the making of him. It was a very small group in a church hall with very loving, supportive teachers and a high teacher to pupil ratio and we could tell that, over time, he felt like he was included there and part of the family. It still wasn’t without incident. He would be late and would sometimes get excluded. We have a strong faith, and we would pray for him every day, and we’ve held onto that – even by our fingernails at times.  

At the bottom of the rollercoaster, it felt hopeless.

Looking back and moving forward 

I think we felt like the behaviours we were seeing weren’t our grandson. It just wasn’t him, and I would think back to all those fond memories, like when we would bake together when he was a child. 

I’d be lying if I said there weren’t times I don’t wonder what retirement would be like – going down the golf course or heading out and about – but we do it willingly and would do anything to make sure that he’s ok. When we went to the coffee morning and heard everyone’s stories… it helped us to unpack those feelings. We could have just wept the whole time as we began to understand what was going on.  

I think that for me it began to change when we redecorated his bedroom… It was almost like he thought “why would they redecorate my bedroom if they don’t want me to stay?”. Then I think he started to understand too and thought “I’ve done all those rebellious things now” and began to put them away. 

It didn’t get better overnight and it was definitely a day by day thing as he stopped smoking, or going out without telling us – we were always waiting for the other shoe to drop – but after about six months we realised “oh, he actually is getting better”. He’s a much happier person and the house is much more tranquil now because we understand.  

Now I look back and I think about the rollercoaster. What’s the first thing you do when they click the bar over your head that stops you falling off? You push against it to see that it doesn’t move. I think that’s what he was doing. 

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1 in 10 of us across the UK are neurodivergent, meaning the brain functions, learns and processes information differently. 1 in 5 children and young people experience mental health difficulties.

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