I would never have guessed it was ADHD

Photo of a woman lost in thought (PantherMedia / Stephan Köhler)

Anna, 38 years old, mother of a boy with ADHD (10 years old)

“We had already tried out all the disciplinary approaches in the book by the time he reached school age: strict, authoritarian, anti-authoritarian… But no matter what we tried, it just didn’t help.”

My husband and I already noticed that our son was different from other children when he was just a toddler. For instance, when he was little, he never stayed happy for long when we had guests or went to visit other people. As long as things were still new and interesting, then he was fine and would play. But after about half an hour he would usually start interrupting and bothering us, and then at some point he’d say things like “Bye, see you later. We’re leaving now,” or "You can go now." As his mother I often found that quite awkward and embarrassing. He would behave the same way when there was simply a lot going on at home too.

He was impulsive, bothered others and found it difficult to concentrate

He stood out in kindergarten too. He often bothered other children and annoyed them with his impulsive behavior. It wasn’t because he wanted to be mean. It was more of a spontaneous thing, whenever an opportunity arose. If another child was in his way he’d stick his leg out, shove them or pull their hair.

He also had difficulties focusing on one thing for long, and kept switching to other activities after a short while. He found it hard to try out things that were completely new to him too. He felt more at ease sticking to activities he was familiar with.

It took our son a long time to learn to put on his own shoes or work a zipper. Back then I didn’t know that fine motor skills sometimes develop more slowly in children with ADHD. I kept practicing with him and wondered what I was doing wrong. Whenever he was meant to sit at a table, he always used to fidget, and still does. We just had to accept that.

He was our first child so we had nothing to compare him to. But we did compare him to our friends’ children. We soon realized that he wasn’t like other children his age. He was just different.

We thought it was our fault

At first, my husband and I thought we were doing something wrong. We thought our son was behaving this way because we were failing as parents and weren’t dealing with him properly. It was really stressful for us both. Our own parents and in-laws kept telling us we should be stricter, tougher and follow through on things more.

We had already tried out all the disciplinary approaches in the book by the time he reached school age: strict, authoritarian, anti-authoritarian… But no matter what we tried, it just didn’t help. It was really hard for us to cope with his behavior.

After a while we started accepting it

I then reached a point where I decided I didn’t want to be at war with my son anymore. I love him after all, and don’t want to make my life harder than it has to be by starting every day shouting and screaming at him. I accepted that this is who he was and made changes in our daily life.

But that meant being quite isolated. We could only meet up with people who accepted his behavior. So we often did things alone. We would go on walks for hours. He always had to get out lots – and still does.

We could hardly ever do things with other families or invite friends over. It always ended in shouting, conflicts and awkward situations. Most of the other parents didn’t stick around long when they saw their children being harassed for no reason.

Our son is really sensitive to stress too. He starts feeling sick or gets a migraine. This also happens when he gets excited, like if he’s going on a fun outing. We try to avoid certain situations now. For instance, we try not to go on long car journeys or drive on winding roads because he always reacts quite sensitively.

I used to think that children with ADHD are always hyperactive

I would never have guessed that our son has ADHD. I thought children had to be hyperactive to have ADHD. But our son wasn’t. He didn’t feel the need to run around all the time and didn’t have a problem sitting still. In his case, inattentive and impulsive behavior tends to be more of a problem.

Nobody had mentioned ADHD before. At kindergarten they noticed that he was a bit behind in terms of his fine motor skills, so they suggested that we take him to have occupational therapy. And that’s what we did. But they didn’t mention anything about ADHD there either.

His teacher took his behavior personally

Then he started school, and we started getting letters from his teacher after about three weeks. She said he wasn’t paying attention or listening in class, and kept forgetting things and failing to complete tasks. She didn’t really know how to deal with his behavior, and took it personally. After a while he started being aggressive towards other children and sometimes couldn’t control his aggression at all. He was extremely unhappy at school. He often cried in the morning and said he had tummy ache.

His teacher came to see us at one point and suggested we take our son to see a pediatric psychiatrist. That really upset me. But we knew things couldn’t carry on as they were, so we made an appointment. After a lot of tests we were told "Your son has ADHD." I was devastated.

We were against medication

I knew from the start that I didn’t want him to take medication. I was worried about side effects. So I got hold of information and read up about ADHD instead.

We started structuring our days very clearly. We tried to always stick to the same routine. For instance, eat lunch at the same time every day, have a short break, then do homework, play, have dinner and go to bed. At the same time every day. He needed a clearly structured day without too many activities. We stuck to this routine at weekends too. Come to think of it, we had instinctively been structuring our days like that before the diagnosis too, but afterwards it became very clear that we had to do it like that. Nowadays he wants structure in his daily life. Every morning he asks us what our plans are for the day.

He doesn’t cope well with spontaneity. He often needs to be told about activities and events hours in advance, so he can mentally prepare for them.

After a while our son’s class got a new teacher. She pretty much saved us. She knew a lot about ADHD and wanted to help. For instance, she made him sit at the front of the class, away from other children. That way he didn’t get distracted and didn’t bother others either. I used to meet up with the teacher at least every three weeks to talk about the problems and what we had to practice at home with him.

We practiced a lot of things for school. We had to repeat things again and again until he could do them well enough. But we limited the practice time so it wouldn’t get too much for him. 15 minutes every day, during school holidays too. I introduced a little reward system and would always give him something after a certain amount of time. He’s in 4th grade now and is moving on to secondary school this year.

Then we decided to try medication after all

But things were still difficult with him, and between him and his friends too. Although his academic performance improved, his behavior was still an issue. Then we decided to try medication after all. He’s been taking it for one-and-a-half years now. It took about four months to find the right dose for him.

He was totally different after that: He was suddenly a calm, approachable child who could engage with his friends. I noticed how good being calmer was for him too. And he carried out tasks without complaining. Everything always used to be such a struggle before.

Some people think that ADHD medication sedates children. That’s not the case with our son. The medication helps him focus. For instance, he can now pour a glass of water without spilling half of it.

The tablets have side effects too. The main side effect is loss of appetite. He eats a lot less. So he lost weight when he first started taking the tablets. And he has more trouble sleeping.

A couple of times, when we were on vacation, my husband and I stopped giving him the medication or lowered the dose. But it was always hell. We soon realized that he needs his medication for now.

Our everyday lives nowadays

Our son has really changed for the better in the last few years. He’s doing well on the medication. There are still a few problems, but we can live with them now.

Over time we’ve all come to realize that he needs routines and rituals. We follow the same schedule every day, and my husband and I are always with him whenever possible. He needs structure in his life.

But that also means we’re pretty inflexible. Spontaneous plans with friends just aren’t possible at the moment. The time would have to fit in with our routine, we’d have to make sure he could eat at certain times, and see who else would be there and whether they’re likely to get on with each other. We always have to make sure leisure activities are okay for him too, and make compromises if need be.

Around five or six o’clock in the evening his medication starts wearing off and his behavior starts becoming a big problem again. So we make sure he’s no longer with friends around that time of day, and leave family celebrations or stop doing other activities beforehand. Otherwise things get difficult again and he starts aggravating me, being loud, and annoying me or other people.

Our life is really trying, and not a day goes by without something happening. Our son needs to run around a lot and always has to get out. The medication helps him to be calmer and more focused. But he still can’t entertain himself. He always wants us to have plans and keeps asking what we’re going to do next.

He never really played as a child. It was more like tidying up and working. He still does that now: He sweeps the house and the road, shovels snow, removes weeds. But recently he’s been spending a lot of time playing at the stream near our house with his friend. They do things like climb around and build damns there. He can’t do role-playing and pretend playing like our younger son does, though.

He’s very thrifty and collects returnable bottles. It’s a hobby of his. He’s saved quite a lot of money that way. And he breeds butterflies: We’ve bred more than 100 butterflies in the last few years! He does find activities he likes, but they’re different from what other children enjoy doing.

He’s going to secondary school soon. We decided not to send him to an all-day school. It would be too much for him. He needs regular breaks. He comes home at lunch, and after that we follow the same routine every day.

A lot of people think ADHD is a trend or a result of bad parenting

We still find it very hard to handle other people’s comments. People often tell us we should be stricter and discipline our son more, and ask us why he still isn’t able to do certain things, suggesting it’s our fault. I’ve only told a few select people that he has ADHD and is on medication.

His school teachers know about it – I’m very open with them. But I don’t tell people otherwise. You often get the impression that other people don’t see ADHD as a medical condition, but as a trend or a result of bad parenting. That really upsets me.

I find it a great relief to hang out with other mothers whose children have similar problems. We understand where we’re coming from.

I have to take care of myself

It’s all quite stressful for me, both mentally and physically. I’ve been ill quite a lot in recent years, and keep getting colds.

Both of our children go to bed at 8 p.m. Our son usually only falls asleep at around half past nine. But I got to the point where I realized I need peace and quiet after 8 p.m. I’ve just reached my limit by then and need time to myself. I usually read. That’s how I wind down. I sometimes meet up with friends, but I’m generally too tired to talk much in the evening, and don’t feel like chatting on the phone either. I usually need time to myself, without anyone demanding my attention in any way.

I go jogging, Nordic walking or cycling in the woods about twice a week. That’s really important to me and helps me relax. I’ve also joined a self-help group for parents and that’s really helpful. We talk about our experiences with the medication and side effects, and share tips about what to do with our children in our free time. Other parents sometimes say they have bad days too, and that they’re really stressed. It’s such a relief to hear that. It really helps.

We should’ve gone to the doctor’s a lot sooner

I’m kind of dreading puberty, to be honest. But I try not to think about it, and we take each day as it comes. I hope he’ll become more independent in the coming years. He’s started spending time at a skate park. I often invite friends of his to go to the zoo or do something else with us. He’s also more integrated at school now. He doesn’t have all that many friends, but he has a few good friends.

I think it’s important to see a pediatric psychiatrist as soon as possible if you think your child is different and none of your attempts to improve their behavior have worked. Looking back, I think we should’ve gone to the doctor’s a lot sooner. We just didn’t want to admit that he might have a problem.

The medication turned our lives around. It has been such a relief for us. It can have side effects too, of course. But we’re happy to accept loss of appetite and difficulties falling asleep in exchange for a better family life.

I couldn’t imagine life without the medication nowadays. Our son is performing well at school and his grades are usually “satisfactory” or “good.” He has friends and can live a normal life.


Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.