Having your child diagnosed with dyslexia or one of the other neurodiverse traits can be a traumatic situation that often leads to the panic of what to do to help. Since every neurodiverse person is different, what to do can differ greatly. But beyond the issue of specific treatments and assists, there are some principles that you can follow that are universal.
We have a dyslexic daughter who also has ADHD. My wife is also dyslexic and ADHD. I am mildly ADHD. It is not uncommon for one or both parents to share some or all of the traits. This can present its own challenges, which we will also discuss.
Photo by Steven Van Loy on Unsplash
A Tough but Amazing Job
Let’s be honest, parenting a neurodiverse child is even tougher than being a parent anyhow. There is often unnecessary guilt because of the genetic nature on many forms of neurodiversity. I say unnecessary because we usually don’t sweat it about short or tall.
Neurodiversity is not a disability.
Neurodiversity means that your child thinks differently and learns differently than society has arrogantly defined as the ‘normal way’. Trust me, after 40+ in higher education I can tell you there is no normal way to think or learn. Everybody is unique and there are an infinite number of combinations of cognitive traits.
Neurodiversity just means that there will, just like everybody else, be areas where your child struggles and areas where they excel. Don’t get me wrong, some of the challenging areas can be very severe for some children.
But remember, parenting can be a game of chance outside of the neurodiverse too. I’ve known people who have wonderful, completely ‘normal’ kids who go off the rails later in childhood or adulthood and cause complete chaos. Likewise ones who were complete nightmares when young, it seems like a switch flips at some point and it all resolves.
Raising your children to the best of your ability is one of the most amazing and rewarding tasks you can do. Yes you will pull your hair out. Yes, you will cry into your pillow at night. Yes, you may need therapy yourself. But it is worth it. That hug or the ‘hello mummy’ or ‘hello daddy’ makes it all worth it.
Good parenting is about doing as little damage as possible
Some Things to Understand
I’m not going to talk about the specifics of assistance and learning for your individual child. There are too many possible options. But there are some key principles and approaches that are universally applicable.
Even the experts don’t understand dyslexia or any neurodiversity yet
Yes, that is what I said. When I look broadly across the academic literature around neurodiversity, I see a lot of good work being done, but much of the thinking is constrained by the core assumptions on which the work is based. Does it make the work invalid? No. But it means that none of the current thinking can be considered complete.
Perhaps it is the benefit of age, and a photographic memory, but I remember so many areas of science and medicine where an existing paradigm was believed to be correct. People’s careers were based on that belief. Others, who tried to step beyond it, had their careers destroyed. Millions and billions of dollars of research money was directed only to that accepted paradigm. I’ve seen this over and over again. The change in attitude to neuroplasticity is but one example. It doesn’t make me distrust science, but it brings humility and a demand that others be humble in expressing the current thought. The more ardently someone expresses ‘this is how it works’ the more I dismiss them, because that is not how science works. Our ideas should evolve and change over time.
Part of the issue is that scientists operate in very narrow silos most of the time, due to the nature of academic funding and time constraints. An expert in a very narrow area may know virtually nothing about a closely related area of study, let alone something very distant. This does mean that there is a tendency to tunnel vision in science and medicine.
We don’t even understand consciousness yet or so many details about memory. Thomas Insel, who was Head of the National Institute of Mental Health in the United States till 2015 said,
“We know much less about how the brain works than we do about the heart, liver or kidneys”.
So everything to do with cognition and learning is and should be assumed to be a highly evolving field and what I would call a work in progress. If you need absolute answers, look elsewhere. Science will give us the best we know so far, within the limits of what it looks at and the methods it prioritises. That is the honest truth.
We are all groping around in the dark. The experts just have a slighter stronger flashlight.
Every dyslexic is unique
No two people think or learn the same. It may seem like it on the surface, but the deeper you get the more differences we find. This is actually wonderful; it is what makes dealing with people so interesting. But it also means that we can’t make blanket statements or assumptions. This is true not just of dyslexia bit of all forms of neurodiversity.
In dealing with a neurodiverse child this means that an intervention or learning strategy that works for one may not work for you. Sorry, but you will have to live with it.
Dyslexia can change over time
I know this is true of dyslexia, I believe it is also true of other forms of neurodiversity. Not only does it change in the long term, it also varies from day to day and possibly hour to hour. My wife and daughter both speak of ‘good days’ and ‘bad days’. On bad days nothing works for them, their brains feel cloudy and confused. On good days they are alert, clear and focused.
Long term changes can happen through learning and development. It is also becoming clear that neuroplasticity, the ability of the brain to rewire itself, also is a factor. I am covering this in a separate article.
Short term changes can be caused by so many factors, from nutrition to stress, hormonal changes and probably even the phase of the moon. For individuals you may be able to, over time, identify some of the factors that influence this and so deal with them, but I suspect that some will remain a mystery.
There are different definitions of dyslexia and neurodiverse conditions
This is also true of the many other forms of neurodiversity. It is the cause of a lot of conflict in discussion and support groups.
To some practitioners in the field, dyslexia will be a very specific issue with reading and writing, and nothing else. To others it will be a wider condition. Some will take a very clinic approach and view it as a disability that needs to be fixed. Others will see it as just part of the huge diversity that is humanity. I’m also starting to see some experts further break apart dyslexia into very specific ‘conditions’, including Phonological Dyslexia, Surface Dyslexia, Visual Dyslexia, Primary Dyslexia, Secondary/Developmental Dyslexia, Trauma or Acquired Dyslexia, Perceptual Dyslexia and Linguistic Dyslexia.
So called lay people (non-professional in the field), parents of the neurodiverse and the neurodiverse themselves, also vary widely in the terms they use. In many ways they know it better than the experts, because they live with it every day. I’m reminded of my last visit to my ophthalmologist (eye specialist) who said she now understood so much better the condition of ‘dry eye’ that I was seeing her about, since she now had it. Before that it was an intellectual exercise. Now it was a lived condition.
There is huge complexity here. Since dyslexia and ADHD often go together, many people will combine them and talk about it as their dyslexia, sometimes to the shock and horror of experts.
We all need to be tolerant of this and recognise that people may mislabel (from your perspective) something like dyslexia. We must try to get beyond the labels to the lived experience.
Some Ideas to Try
So, given the preamble, what can you do? Here are some ideas that I have and do practice with our daughter, that you may find useful.
Remember that you can’t do it all. Do not beat yourself up if you just can’t address some of these approaches. We all have limitations, every single one of us. Do what you can, lower the stress. Your child will read your stress, so doing less but sustainably and stress-free is so much more important than trying to be some ideal parent. None of us are.
Whatever level you can embrace these approaches will be a huge help. Do not beat yourself up because you can’t do more. Standing with your child shows you understand and support them and that is often enough. Love is most important.
Get a formal assessment done.
This will be essential with seeking many interventions at school, but it really helps to know exactly what you are dealing with. It will also help you know who should be on the support team we cover next.
Since it is common to have multiple ‘conditions’, I would advise having a broader assessment to look for other things that have not been noticed yet. Usually there will be one ‘condition’ that gets noticed first. If you just focus on that you may miss a wider issue or something more subtle. Early interventions often make a huge difference with neurodiversity, but you can’t do that if you haven’t identified the need.
Build a support team, then teach your child how to build their own
When confronted with a diagnosis of any form of neurodiversity you are going to need support. You will need support for your child, but you will also need support for yourself. You can’t be there properly for your child without supporting yourself first.
You need a support team of really good people that you can work with. They not only have to be smart, but also have a personality that you and/or your child can work with. Don’t be afraid to shop around. Getting second opinions is often the right thing to do, particularly early on.
For yourself, I believe that every parent needs at least the following:
· Lawyer
· Good general practice doctor
· Counsellor, psychologist, psychotherapist
· Other parents on a similar journey
I think everyone needs a good lawyer on their life team anyway (along with an accountant). In this specific case they can also be handy. Nothing gets the attention of an unsympathetic school principal than a well-crafted letter from your lawyer.
The starting point for specific support is often your GP doctor. If you do not have a good, open, cooperative doctor then find a new one. The good ones can be hard to get into but persevere if there are few in your area. In some countries the GP is key to further cost-effective support. For example, in Australia where I live, a GP can prepare a mental health care plan that gets you up to 10 subsidised sessions a year with a psychologist. The government pays part of the consultation fee. The psychologist can be of any type, so this could be a developmental or educational psychologist for your child, since here they are all considered psychologists, but with specialisations.
We all need support and while hopefully your life partner (if you have one) will be supportive and caring, I believe we all need an independent support skilled in dealing with all the issues you will confront. Recognise that investing in yourself will make you a better parent and pay dividends for your child.
If you are of that orientation, add a spiritual advisor to the list. This could be a minister, priest, Iman, rabbi, monk, lama, spiritual counsellor or such. Again, shop around. It is my view that there may be spiritual dimensions to neurodiversity, something that I will explore in other articles.
Find other parents on a similar journey. This could be a local support group or online. Again shop around. Some groups can be toxic.
Your child will need a diverse range of support depending on the concerns, from a paediatrician to speech therapists, learning specialists, tutors and more. The starting point may well be an educational or developmental psychologist. Make sure this person does not just focus on the ‘condition’ but looks after your child’s general mental health too.
In finding specialists to help your child, listen to your child’s preferences. There is no point having a tutor for them that you like if your child hates them. They will not learn.
The members of the team will likely change over time as your child’s needs develop in new ways. It will help the child if there is at least one consistent member of the team. This may well be the educational or developmental psychologist.
As your child grows, share with them this process of building a network and encourage them to build their own. Give as much control to your child as they can handle at each stage. It is the only way they will learn to be an independent adult.
Cost can be a major issue with all this support. Depending on your circumstances and which country you are in, some or all of it might be provided by the state. The peak body for whatever ‘conditions’ your child has should be able to provide advice about what government funding and support is available. Remember too that there are also non-government organisations that may be able to open doors to you, from the Freemasons to Rotary and more.
If you are a family with two or more parents, learn to tag team
It doesn’t help anyone if the parents are pulling in different directions. So the first step is alignment.
Frankly how well this works will depend on how good your relationship was before the diagnosis and how enlightened each of you are. Many marriages, partnerships and relationships, whether a pair or polyamorous, do not survive a neurodiversity diagnosis. In other cases it may make it even stronger.
Aligning the parents means spending enough time talking it out, discussing attitudes and approaches so that you reach a common position. With this done it allows one of you to make decisions that the other(s) will automatically support. It allows you to share to load without endangering the quality of support your child gets.
If you are a solo parent, the support team is even more important
Being a solo parent is tough normally, this situation makes it harder. You will need a strong personal support network to compensate.
There is one positive from doing it alone. It is better to be a solo parent than in a relationship where the partner is very unsupportive.
Recognise your own issues
We all have issues. Some have big issues, some small. If you share the neurodiversity your child has you will probably have issues relating to that. Just remember that the world is different now than you were a child and so your experience need not be your child’s.
Self-awareness is so important in raising any child, and here it is just exaggerated.
Good parenting is trying to do as little damage as possible.
If you are following the advice about the support team then you will hopefully also have a personal psychologist or such for yourself. Don’t spend all the time talking about your child. Focus on you. Explore what is emerging, as stuff will, through the process of supporting your child.
Dealing with difficult school authorities may bring up your own issues about authority, speaking out, being confident or something else. Don’t put off dealing with it. Work on it now. To be blunt, you can’t be walking wounded if you really want to support your child.
Do the work you need to do. Remember too that this shows and educates your child that it is fine to have support, that everyone has issues to work through. Talk about it and be open with your child. Not about the stuff that is bothering you, but about the process of self-development. Children model their parents. Set the example.
Creating more wins than losses
Your child is going to take some hits. No matter how hard you work, this will happen. The important thing is to try to ensure that your child can see they’re getting more wins than losses. This means putting effort into the things they can and want to achieve. Always take the low hanging fruit that is available, even when working for the harder stuff. Easy wins matter.
School grades don’t matter
I know this will be tough for some of you, but seriously, school grades do not matter. Ever. School grades are there because lots of parents want them, governments are focused on measurement and because, for some kids, they are a good motivator.
Universities like high school graduating grades because it makes their job easier in selecting student entry. But here is a little secret, there are always other ways to get into university. Here in Australia, for example, there is always an entry option for adult learners. It varies from university to university, but is typically the age of 23. At or after that you can apply for entry in ways that ignore your high school score or lack of it.
Having taught university basically my entire adult life I can tell you that most students entering university would actually benefit from some years of life experience post high school. We rush kids because we want them to get on the right path early. But at 18 or 19 most kids are not mature enough to make the right decisions. I have seen so many kids in the wrong course for the wrong reasons. Give it time.
And universities are not the path to success they claim to be. As I’ve written elsewhere, the whole higher education approach is in trouble.
If your child is set on a career where having a degree is a gatekeeper, like medicine, then they will have to confront this. But alternate entry methods still apply.
Your neurodiverse child will be a lot smarter than most teachers will catch on to. So the marks they give will not be an accurate reflection of your child’s ability, they simply measure how the child did a task they may not be well suited to, on a particular day that may have been a bad day, and in a particular communication mode that may not suit the child. My articles on maths and on text literacy deal with this further.
Adverse grades will impact your child’s self-confidence and destroy any love of learning they still have for no good reason.
Don’t panic
Related to the previous topic is the feeling that many parents have that they must find solutions quickly lest their child be massively disadvantaged for the rest of their life. Yes early interventions help. But since many neurodiverse conditions are aggravated by stress, the last thing your child needs is to be dragged from specialist to specialist, intervention to intervention.
A calm and considered approach will help everyone. Take some time, educate yourself about the issues. Proceed at a pace that works for you and your child.
Also don’t be concerned about sticking to the ‘normal’ age progression standards with school. If your child needs it, start them at school a year later. Repeat the last year of primary school if required. Just be prepared to move them to a different school for this if necessary. We did this, taking the opportunity to move her to a primary school which mainly fed into the high school she was going to. While she hated the concept of the move at the time, it allowed her to make friends that then flowed into high school with her, easing that sometimes difficult transition.
Never use the word disability around the child or allow others to
As I’ve written about extensively elsewhere, I hate the word disability being assigned to a child who thinks differently. Whatever we think, disability has baggage associated with it. Your child does not need another reason to think less about themselves. Banish the word.
Recognise how tiring it is to be dyslexic
Any neurodiverse child is working so much harder to do tasks that are not well suited to their actual abilities. It is exhausting. So your child may need time after school to recover. Recognise this and accept it as the way it is. No amount of yelling or discipline will make them do homework well straight after school, or enjoy going to their tutor. Now your child may be different, in which case that’s great. But in many cases they will be totally wiped out.
Plan your activities around it.
From as early as possible, start giving your child control
Always try to look at things from your child’s perspective. You are telling them what to eat, to go to school, do homework, go to bed, their teachers are telling them to do stuff all day. How would you handle that?
From as early as you can, designate parts of their life that they alone have control over. When our daughter was three years old, on Saturdays, which were father-daughter days, I started by letting her choose where we went and what we did. If she did not know, I’d ask her if I could suggest something. But I wouldn’t just tell her what we were doing. Pocket money was something that we resisted the urge to control. Rather we gave her money and it was her decision. If she spent it unwisely, we said nothing until she expressed unhappiness. Then we would make it a positive learning experience.
It amazes me how many parents complain about their kids not being able to make good decisions, but those same parents never gave them the chance to learn and practice how to. That’s dumb.
Listen to expert advice, but then do what your gut tells you
You should always seek expert advice. With children, getting the right help early can make a major difference. That said, it is important not to panic and rush. You need balance here.
The issue for parents is that there is often conflicting advice and especially when it comes to programs to support young children in reading development there are different approaches, all of which will work for some children.
This is where you support team comes into play. Get on the forums to discuss the choices directly with parents who have tried them. Talk to your child’s developmental psychologist or similar. Do your own research. If possible, let your child try out an approach.
But, given what we have discussed earlier about the work in progress state of neurodiversity understanding, sometimes you have to go against the advice. My daughter, with dyslexia, found major benefit from Irlen coloured glasses. Yet if you listen to the experts, they will say there is no evidence that it works. The argument against is perhaps most succinctly put as:
“Current, evidence-based research continues to argue that dyslexia is [a] specific learning disorder which involves difficulties with phonological decoding, and accurate and fluent word recognition”[1].
To me this misses the key point that so many dyslexics report issues of words and letters moving on the page. Are the experts arguing about two different forms of dyslexia?
You see the challenge for parents. So despite being a scientist myself we ignored the advice and gave Irlen a go. We briefed our daughter that we had no idea if this was going to help, but we thought it was worth an hour to try it out. When she hit the right coloured lenses for her, the exclamation ‘the letters have stopped moving’ was striking.
So use your own judgement.
Shift the conversation to strengths
One of the major issues I have with conventional education at present is that it seems more oriented to weaknesses than strengths. Neurodivergents often have what I call a ‘peaky strength set’. What I mean by this is that they can have large areas they struggle with but then a very specific area where they excel. There can be many of these peaks or only a few, depending on the child. The insistence on all kids doing all the subjects through much of school means that many neurodivergents are setup for too much failure.
Conventional education works from the belief that you cover all areas and, over time, a child’s strengths and focus area will emerge over time. This is reflected in the lack of electives early on that progressively open up in later years of study. This works for children with few major weak areas.
Neurodiverse children often show their strengths and weaknesses quite early. A strengths-based approach to learning will focus on the areas of greatest ability and use them as the cores from which exposure and development of the weaker areas will develop over time and driven by interest. There is a lot of work being done on this approach to learning. While it can fit well into primary school, there are challenges with how to fit the approach into existing high school structures.
But outside of what we can change at school, as parents we can totally shift our focus to strengths. Here are some specific suggestions.
Ensure that there is at least one activity a day that is oriented to your child’s strengths.
Remind your child of their strengths frequently.
Make a strength focus part of family life.
Provide modelling opportunities. Let your child see you taking a strength-based approach to your own development.
Create discussion opportunities that are not forced.
Sometimes great strengths can be very specific, and thus hard to find
As discussed above, neurodivergent strengths can often be very ‘peaky’, in other words specific and narrow. That can make them hard to find. The only way to find them sometimes is by taking a very wide and indiscriminate approach to experience and seeing what happens.
Exposing your child to a whole range of different experiences, activities and knowledge domains is important. This means trying all sorts of odd things. For example my daughter and I could be described as useless at sports. However only later in life did we both discover an affinity with target archery, and I know I am very good with target shooting, again discovered later in life. Had our schools offered these experiences we might have discovered that we were good at some sports much earlier.
I know from my university teaching that often it will be a very specific topic that will catch one student’s imagination and then, with the right encouragement and support, they are off running with it. Try to structure diverse enrichment activities into your child’s life from as early as possible.
Then, when you hit on something, provide follow-up opportunities that get more specific to see if it really takes.
Use inspiring examples that are relevant to your child’s interests
By mid-high school we had found our daughter’s attraction to film making. So not only did we find summer workshops we could both do so she had support, but I also used film making as the domain to help her understand other subjects, like maths, history, etc. So I would reframe maths problems so they related to a film production, we watched movies on any topic she wanted to better understand (and then discussed them) and whenever we were talking just about film and tv production I would try to tease out some angles relevant to what she was currently doing in school.
Any passion can serve as a vehicle to do this. For myself this passion was wargaming. In the 1970’s there was strong interest in map wargaming. This served as a driving passion that led me actively to study geography, history, science and math. I ended up teaching myself ballistics, rocket science and aerodynamics long before I hit them in formal study. Likewise my knowledge of geography became quite strong, having fought paper battles backwards and forwards across the landscapes.
Also children need to see examples of people with their own neurodiversities who have made it. Dyslexia is easy as there are so many entrepreneurs, scientists, authors and more who are prominent. But a bit of digging elsewhere will find good examples across any neurodiversity. For our daughter I found examples of directors, producers, scriptwriters, set designers and animators with dyslexia. This is getting easier as more people are willing to talk about these issues.
Find the interests and strengths, then leverage them. Show positive examples from that domain of interest.
Let your child’s emerging interests lead the way
As we’ve talked about above, as your child demonstrates interests and hopefully passions in particular areas use them and make them more of the core of their life.
The world of technology is opening up more diverse ways for people to make a living. The old model of having to fit into an existing career are passing and one can chart a more personal path.
When a child is young you may have to do much of the research and finding of examples. Frankly you have to enter the world of your child and immerse yourself. As they get older, they will take over much of this themselves having seen you do it as a model.
Clearly this is easier for some than for others. My wife struggled with this as our daughter grew because her own dyslexia made some of it harder. So I picked this up and ran with it. Because of cost there were things we could not do. We did the best that we could do.
Build a partnership with your child
Everyone needs support and your child especially. Doing even one of the things above will help you build a closer and more mature relationship with your child. Standing with them, listening to them, supporting without controlling them, gives your child space to grow, to experiment and fall down, knowing that you have their back. Don’t be too quick to pick them up. You don’t want to build dependence.
Gradually, over time, step back and let your child step up.
Realise and show that you are learning from them as much as they are learning from you.
Be open and honest with them. Kids always know when you are lying. Filter information but don’t hide it, as appropriate for their level of maturity and understanding. Ask their opinion.
If you treat your child like a partner on the journey, because that’s what it is, then the rewards are huge for you both.
Conclusions
No parent is perfect, and no one can do everything. Knowing yourself and knowing your child is what will guide you through all this. The rewards are great.
Love and light to you all.
[1] https://www.melbournechildpsychology.com.au/blog/coloured-irlen-lenses-really-improve-dsylexia-reading/