Dyspraxia Awareness Week 2018: Mental health matters to teenagers with dyspraxia and their parents

Trustee Sally Payne sat down with Judi Smith to discuss mental health matters to teenagers with dyspraxia and their parents.

“Every teenager gets a bit anxious, but teenagers with dyspraxia have so many extra things to be worried about. When do everyday worries become a mental health issue – anxiety.”

Judi is someone I consider to be an ‘expert’ in dyspraxia, an expert because she lives in family of dyspraxics and because of her experience as a tutor for pupils with specific learning difficulties. I’ve known Judi for over 10 years now, as the parent of a young man referred to me as an occupational therapist and as a Dyspraxia Foundation volunteer. Judi has generously shared her family’s experience of living and growing up with dyspraxia, and our conversations (often over coffee and cake) have without doubt had a positive influence on my practice. As Dyspraxia Awareness Week 2018 focuses on the mental health needs of teenagers with dyspraxia, it seemed a good idea to write this piece so that other parents, carers and professionals can benefit from Judi’s experience.

Poor gross and fine motor skills are core features of dyspraxia (also known as developmental coordination disorder) and these present lots of challenges for children during the primary school years. But it is the combination of movement difficulties with poor organisation, planning and time management skills, and others’ reactions to these that can really affect the emotional well-being of teenagers and young adults with dyspraxia.

All teenagers worry about how others will perceive them. They want to fit in and not stand out. But teenagers with dyspraxia have more reason to worry about drawing attention to themselves than their peers, as Judi observes:

They worry that people will think them stupid because there are things that they can’t do that others manage easily, like eating without spilling things down their clothes. They have to concentrate so hard on what their hands are doing that they can’t manage the social aspect of eating as well. So they might avoid eating in the company of others, or only agree to go to certain places where they can eat without using cutlery, like burgers or pizza. They worry about where they are going and what they are going to eat. So an occasion that should be enjoyable becomes very stressful.”

Judi’s point that experiences that are enjoyable for most teenagers can be highly stressful for teenagers with dyspraxia is an important factor for their well-being. The potential cost of accepting an invitation (risk of social embarrassment, physical/cognitive effort required to get through an event) has to be balanced against the possible benefits, and parents may need to support their son/daughter with the emotional fall-out of the decision they make.

For parents, providing support that is helpful but not intrusive is a fine balance according to Judi:

“They go through the same feelings as other teenagers of wanting their private lives to be private. But as a parent you can see their anxiety building and you don’t always know why, and they may not want to tell you why. When they do talk about what’s worrying them, it can be hard to know whether they want advice or just want to offload.”

All teenagers want to be independent and take greater responsibility for themselves as they approach adulthood. But for young people with dyspraxia it can be hard to see peers coping with deadlines, organising themselves and managing daily activities. Respecting teenager’s desire for independence, but seeing their frustration and anxiety when they struggle to manage is hard for parents:

Budgeting is a real challenge and I used to help by going through his bank statements with him when he went to university. But this meant I could see where he was spending his money and he might not want that. He uses Apps and online banking now, but I know that he has to work really hard and worries constantly about whether he’s spending too much, how his budget is going to work out and what he’ll do if something unexpected comes up. Anxiety about going into the red because of his organisational difficulties is an added pressure. I know he needs and wants to be independent, but as a parent it’s hard to see his anxiety and hard to know just when to offer help.”

Managing the frustration of losing things, breaking things or unintentionally letting people down by missing appointments or double booking is hard for teenagers with dyspraxia and their parents:

“The things they lose might not be valuable or irreplaceable but losing or breaking something for the third time in as many months is hugely frustrating for them. Then there’s the time they spend looking for things like their wallet or keys, making them late which is another cause of stress and anxiety. Their anxiety is cumulative and it’s hard not to get caught up in it as a parent.”

Judi says it’s important for parents to try to keep things in perspective but to be aware that a little anxiety can very quickly grow into something bigger . Teenagers with dyspraxia often worry about things that might happen. This anticipatory anxiety is based on their experience of things going wrong previously, or the negative reactions of others:

“They get anxious about what might happen, and each time something does go wrong the anxiety increases. They worry about how other people like teachers, peers, members of the public will react, and this anxiety can grow out of all proportion. They catastrophise, imagining the worse possible outcome and can’t then rationalise what the next step should be.”

Judi says parents can help build their teenager’s confidence and self-esteem by encouraging them to notice when things go OK (without coming across as saying ‘I told you so’). Parents should also help by not belittling teenagers’ anxiety and helping them come up with their own solutions to reduce their anxiety:

“You can say ‘I understand that you are worried about forgetting x, so what do you want to do to make sure that you don’t forget?’ Even if their plan sounds a bit odd to you, like setting three alarms so they don’t oversleep, let them try their strategy. Suggest they try it for 2 weeks, then review together whether it’s worked or whether you need to come up with a new plan. This way you are building them up so that they are in control and developing skills for the future.”

Most of the parents I’ve met work really hard to help their sons and daughters develop the skills and confidence they’ll need as adults. But it’s hard for parents to know when their teenager is ready to do something independently (like use public transport) and how much help to give them:

“You are really aware as a parent of their vulnerabilities and it’s hard to get the balance between wanting to keep them safe and allowing them to do things for themselves. I’ve sat next to the phone worrying about all the things that might go wrong, but often they surprise you with how independent they can be. Some parents have the opposite problem in that their teenager is frightened to try something and it may help to take small steps towards the goal.”

I asked Judi if she had any advice for parents of teenagers with dyspraxia and she offered the following:

“There will be times when your son or daughter will be super anxious, for example when they have exams or when there is a change at school. Try not to get caught up in their anxiety. Listen and accept their anxiety but try not to join them in their worries.”

Judi also stressed that it is important to recognise when you need outside help for your teenager’s mental health:

“If you need to talk to someone or to seek help from your GP or the school, you haven’t failed as a parent – and nor have they. You can’t fix everything and asking for outside help might be the best thing you can do. You wouldn’t blame the parent of a child with asthma for seeking help with their medication, so why should you blame yourself for asking for help for your child’s mental health? If their anxiety is coming out through self-harm or an eating disorder, parents can feel hugely guilty. But you aren’t responsible for everything and there are times when the best approach is to look for professional help. Facilitating that is you doing your job as a parent.”

Being the parent of a teenager with dyspraxia can be exhausting, but it’s important that parents look after their own health as well as their son or daughter’s:

It gets very tiring. Sometimes you just want things to go quiet for a bit so you can stop and take a breath. You need to find someone outside your family to talk to otherwise the anxiety will stay within the family and snowball as it passes from person to person.  Keep a diary and encourage your teenager to as well because it can be hard to see the small successes when emotions are running high. Another parent said to me ‘I am a professional worrier. I am so scared about the future and how they will manage’. But look around, there are people with similar difficulties who are doing OK and because our young people are aware of their challenges in some ways they are more prepared than their peers for adult life. These tests can make them stronger people in the end.”

On behalf of all the teenage dyspraxics I have met and have yet to meet, thank you parents and carers for all that you do for your young people. And thank you especially to Judi for sharing your experience and insights. I think it is time for more coffee and cake, don’t you?