Have you ever wondered what it might be like parenting a child with ADHD? Or perhaps you’re a parent whose child has recently been diagnosed with ADHD and you’re trying to find your way ahead? If either is true, read on as I get into conversation with Ann who blogs over on Rainbows Are Too Beautiful in this edition of the What is it really like? series.
Can you share with us about your child who has ADHD, and their ADHD story?
This may be a bit strange, but Anthony’s ADHD story probably started with him being diagnosed with Autistic Spectrum Disorder (ASD) or Autism. Anthony was our first child and it was only really when we saw him with other kids his own age that we noted somethings about his development weren’t the same. When he was four years old we took him to our doctor, was referred to a specialist paediatrician and he was diagnosed with ASD. Following this granted a statement of special educational needs that provided him with support before he started school. He has a 1:1 learning support assistant who helps him all the time he is at school. He found many things challenging and after being there for two years we noticed that many of the issues he was having were down to not being able to focus, not being able to sit still or stop moving, and sudden focus changes.
Most of this can been considered to be down to the ASD diagnosis, that he was moving because of sensory issues and losing interest in topics because they weren’t of interest to him. His speech and language therapy meant he was now able to express himself but we still saw that strange things like conversations and indeed his mind darting erratically from one topic to the other, blurting out irrelevant things and on my goodness… so much interrupting. These might seem normal for a child his age but it’s honestly on a whole different level.
By this time our younger son had also been diagnosed with autism and although we knew every child with autism is different we noted big differences.
We talked to Anthony’s occupational therapist about his tip-toe walking which is another symptom of having sensory difficulties and discovered after appointments it was actually most likely because he has… hypermobility. It suddenly occurred to us that maybe Anthony wasn’t acting he way he was just because of his autism. I knew other kids with ASD and ADHD and started to look into this and found that ASD and ADHD are comorobid conditions – that’s ones that commonly occur together. We thought maybe him seeking movement wasn’t just was because of his autism anymore and started the process to get him accessed for ADHD.
We took him to a set of appointments and a short while later he was diagnosed with ADHD. The tests are a set of tick boxes and observations. The tests were set on a scale of 1-100 and when we had the test, anyone over 70 was suitable for a diagnosis – Anthony scored 94. Since then we’ve discovered that some of Anthony’s greatest difficulties are not associated with his autism but instead with his ADHD.
What is life like with a child who has ADHD? What are some of the challenges?
For us it’s very physical and emotional. Anthony is described by his teachers and classmates as ‘fun’, ‘friendly’ and ‘hard working’, which is great. He is on… all the time which is exhausting for him and many around him. He can also change mood very quickly going from extreme excitement to extreme anxiety. He finds it difficult to wait for anything he likes and finds it difficult to focus on anything boring. Written like that it can seem like any other child but the difference is plain when you experience it. Here’s a few examples.
When I say he is on all the time, I mean all the time until he is exhausted. When he wakes there’s no turning over and going back to sleep, he’s straight up and jumping around the house. Fine at 7am but not good at say 5am when the rest of us need.. well, our rest. He cannot rest, can’t go back to sleep and can’t stop moving, shouting and jumping about.
When his mood changes he could be enjoying something on television, then something happens either on the tv or he’ll just remember an event from years ago and burst into tears. He’s so upset, but can’t explain why.
He fiddles with everything while waiting in an effort to control himself. Games of monopoly end up being abandoned because he cannot leave the pieces. He apologises every time he’s asked to put pieces down or back, but will do it again seconds later, apologising again and so on. Then he starts to get upset because he is unable to control himself.
And in case you think no child can concentrate on anything that’s boring imagine not being able to go to the toilet or eat your dinner because you can’t focus on the task and can’t sit for the length of time the task requires. Going to the loo or eating dinner can actually take hours because he has to be reminded to stop jumping about, sit down and eat/go to the toilet. Oh and try not to stop knocking his drink over, again and again. Needless to say we only ever half fill cups!
How do you help your child to overcome these specific challenges?
We work with Anthony to help him regulate his physical movement. Specific exercises help his body feel grounded again but it’s not enough to help him concentrate. We took a big breath and went down the medication route. It’s not an easy decision for any parent, but one that we talked with Anthony about and agreed on.
Routines help him focus on completing everyday tasks and it’s easier to get his attention back on track if it’s part of a routine. Anthony has been putting his clothes on in exactly the same order since he was five years old, and probably always will. We used a comic strip to try and help him finish going to loo.
We also use mood charts and scales for Anthony to identify how he is feeling / how he should be feeling about things. It helps cam him down and focus on what’s actually happening.
How does having a child with ADHD impact on the family and in particular you, the parents?
It’s honestly exhausting, I’m on high alert all the time. Its a case of trying to help him regulate himself a lot of the time.
How important would you say encouraging movement, good diet, and sleep with a child with ADHD?
Anthony definitely needs opportunities to move about, we’d be lost without the trampoline.
Some parents of children with ADHD have has success with changes in diet. Although this has worked for many kids it’s not really been an option for us. Anthony’s autism means he’s quite picky about what foods he will eat. What is important is that he does eat a well balanced diet. Spikes in his energy levels can made his condition worse.
He eats three bowls of energy storing cereal every morning before school – I couldn’t eat that much! But this is good for balancing his energy and because one of the very common side effects of his medication is a reduction in appetite. Combine not eating with moving all the time and it’s not a surprise that the doctors monitor his weight very closely.
Sleep is another important factor for kids with ADHD, if you are on the go it’s a time when your body can rest. Unfortunately it’s not always the case. Anthony often has to be physically exhausted before he can sleep (hence the importance of exercise). He’ll tell me he is tired but that his body just won’t stop jumping. If he doesn’t eat enough or sleep enough he’ll collapse at the wrong time of the day.
What are some parenting tips you would like to share for parenting a child with ADHD?
Knowing what areas of interest your child has can be used as motivation. With this knowledge you can adapt their activities to include this area of interest. For example, when Olympic Swimming Champion Michael Phelps was young he struggled in school. His mum tailored his education around his interest in swimming. To help him read, she gave him the sports section of the newspaper and made sure his math problems were customised so they were swimming related. We do the same type of thing and use areas of interest for homework, and share the information with the school.
Routines and having places for things make life easier. If a Anthony can’t focus then having a routine to act as second nature really helps him complete tasks. Putting important things back in places means Anthony can find them himself. Looking for things is very difficult, it’s like he can’t see the woods for the trees and then is distracted by something else before he’s even really started his search.
What advice would you give to parents who are just starting on an ADHD journey?
In some ways I feel I’m still starting on the journey. In comparison to the knowledge I’ve consumed about autism, I feel I know ADHD far less. Most of the advice we were given turned out to already be applicable as part of the way we helped with autism in the family home.
In some ways it’s like parenting any other child (it’s not really that different to my other kids), it’s about being there for them and fulfilling their needs. Sometimes that’s a bit more challenging.
Learning and leaning on other parents in similar positions is very helpful. We tend to spot each other in playgrounds etc. I spot another child, recognise the traits and chat with a mum for a few minutes as we exchange stories. It’s not the same calm relaxed chat as the other adults might be having as we are on the look out but it’s relaxing in a different way.
Don’t be afraid to take advantage of ‘disabled’ services. For example having ADHD in the family can bring big challenges at things like theme parks and it’s OK to use the services that are available.
What are some myths about ADHD that you would like to debunk?
People with ADHD don’t pat attention – not true. An attention deficit means difficulty regulating attention. Many people with ADHD may have extreme difficulties with focusing, organising or completing tasks they find boring but they can focus intently on other activities that interest and engage them. This tendency to become absorbed in tasks that are stimulating and rewarding is called hyperfocus and can be a great asset. There is also something called the ‘Batman’ effect that can make some kids very focused too.
A child with ADHD is not just one that has difficult with keeping still. There are three areas, hyperactivity, attention deficit and a relatively less known one called impulsivity. Acting impulsively or on a whim without any forethought to the consequence. This is what makes Anthony shout out of turn, interrupt all the time or become instantly upset by something.
What are five things having a child with ADHD has taught you?
Patience, empathy, creativity and can I say patience twice again? Trying to understand how things feel to Anthony and then work out how to help him is basically what I do. Sometimes that’s hard when he’s screaming at you in car park like a 2 year old having a tantrum, and that’s where the extra patience comes in. Really it’s just treating him as the individual he is so it’s the same as what I do for my other kids. One has autism and one without, but as each is different, each needs different help.
Anything else you would like to add?
I’ve got experience of Anthony’s ADHD, but as he also has ASD and a few other things it might not be the same as others. I read somewhere recently, “They didn’t have all this ASD and ADHD things in my days, people just got on with it.” Well, you don’t have to just get on with it, because people weren’t. They were struggling, being excluded, ignored or singled out as naughty, and even worse punished. It’s not right that our kids or us as parents should feel like this and I’d encourage any parents of kids with ADHD or similar conditions to meet others if you can, even if it’s only to sometimes feel you are not alone.