And Next Comes L: An Interview with Dyan Robson

Changing lives, one light bulb moment at a time.

I love that quote. Whenever I think of a “light bulb” moment I’m immediately taken back to the day we discovered Hyperlexia. For so many months we felt helpless, lost. Neiva was not neurotypical, that we knew, but trying to get an autism diagnosis also had its challenges.

There seemed to be no “typical box” for Neiva.

“The Light Bulb Moment”

Neiva had gone to bed, Paul was still at the office and I was again scrolling through countless autism websites looking for answers. She had just had another particularly stressful day at nursery and I was trying to find specific strategies for coping mechanisms for autism. After scrolling past web pages I’d visited many times before, seeing strategies I’d tried using without success, something in the search results caught my eye. “….A precocious, self-taught ability to read words which appears before age 5, and/or an intense fascination with letters, numbers, logos, maps or visual patterns…..” The light bulb moment! I had somehow stumbled across a small seemingly insignificant page simply titled Hyperlexia UK. I could not believe what I was reading. Neiva ticked every single box.

I wanted to know more. I typed Hyperlexia into Google and found an amazing website ‘And Next Comes L’ a treasure trove of all things hyperlexia. Dyan, its founder, is Mum to a son with hyperlexia and hypernumeracy. When her son received his diagnosis in 2014 she knew nothing of the subject and had to study and research everything herself. Her website is full of information, strategies and practical help to improve communication between parent and child and has been source of real encouragement for me.

Dyan also has a support group on Facebook which again has been a huge help and, despite the time difference between here in the U.K. and Dyan in Canada, she responds to any questions we may have.

She really is an amazing lady.

Hello Dyan, thank you for taking the time to talk to me today. Would you tell us a little about yourself?

Sure! First of all, my name is pronounced just like Diane. I just want to get that out of the way so no one mispronounces my name while reading through this interview…

I was born and raised in the Canadian prairies and married my high school sweetheart. We have two boys, J and K, who are currently ages 8 and 6. J is the son who is diagnosed with autism, hyperlexia, hypernumeracy, sensory processing disorder, and, most recently, ADHD hyperactive/impulsive subtype.

I am also a part time piano teacher, something that I have been doing since well before having kids of my own. And then, of course, I also write a blog, which I love dearly.

Just for anyone reading here that is unfamiliar with the term “hyperlexia” how would you describe it?

Well, hyperlexia is actually something I find very difficult to sum up into a short description.

Basically, though, hyperlexia is a self-taught early reader who has significant difficulties with verbal language, usually accompanied by an intense fascination with letters (and/or sometimes numbers, maps, or logos). So my son could read you just about any word at age two, but he couldn’t carry on a conversation, answer questions appropriately, or comprehend non-written instructions.

It is important to point out, though, that hyperlexia is not a standalone diagnosis and is usually diagnosed alongside something like autism. I like to think of hyperlexia as a practical label instead of a diagnosis.

Could you take us back to the beginning, what lead you to discover hyperlexia?

Oh goodness, I’m not even sure where to start to answer this question. We always knew there was something different – something special – about J. I vividly remember him at age 4.5 months. He had just learned to sit up independently, a milestone most babies don’t reach until closer to 6 months or later, and he would sit quietly, carefully flipping through books, one page at a time. Not just any books, but full on chapter books with delicate pages like Harry Potter. He wouldn’t make any noises or anything. He would just sit there turning the pages one by one. We had always read to him since birth so his love of books came naturally, but the way he flipped through those pages like a little bookworm was so mesmerizing and fascinating.

Around 18 months or so, while my husband was away for work, my father-in-law came over to play with J for a bit. My father-in-law pulled out a set of chunky 3D plastic alphabet letters and numbers that my mother-in-law had found at a garage sale to play with. J could literally not stop playing with them ever since that little play date. He would sleep with them, carry them, hug them, and eventually started to name them. You can only imagine how shocked I was when he started saying the sounds “Rrrr” like a fiesty pirate and “Dubba-dubba” for W in the cutest little voice.

Sometime around this point, J also insisted I reread Dr. Seuss’ ABCs over and over, until the point that holding the book in my hands was pointless because I already had the book fully memorized. He was also comforted by me singing the ABC song from the Signing Time video, a video he watched probably close to a million times.

Then just shortly before his second birthday, he started spelling out full on words with alphabet blocks and reading big words from books.

By age 2.5, he was reading those early reader books all by himself. Then shortly after, was writing out words on his own with chalk.

Obviously, I thought he was brilliant and he is, but after he turned three, concerns started to creep in. He would have frequent meltdowns. He would hyper focus on his letters and tune the rest of the world out. His conversation was practically non-existent and his speech relied heavily on echoing phrases from his favourite books or movies.

So by age four, when my younger son started carrying on better conversations with me than J could, I pushed to start the referral process for an autism diagnosis.

Shortly after his fifth birthday, he received that autism diagnosis. And that is when my world completely changed because the words hyperlexia and hypernumeracy were first introduced to me during his assessment. The sense of relief I felt when I heard those words is indescribable. I am so thankful that the psychologist introduced those terms to me because I could finally name what J has.

I am still saddened though that I never stumbled upon the term hyperlexia before this moment. It angered me, actually, which is why I choose to write as much as I can on the topic now.

So now you had a diagnosis and now you had a name. I feel very lucky because when I started my research, I found you! Obviously you didn’t have that. I’m guessing there wasn’t much else out there? When did you realise that there were other parents out there like you struggling to make sense of hyperlexia?

There was certainly next to nothing on hypernumeracy when I first searched google. I think it was like 60 search results total or something. However, there were a few things on hyperlexia I could find, but not quite what I was looking for. I so desperately wanted to connect with other parents and read about their journeys, their strategies, and what it is like to watch a hyperlexic child grow up. I was able to find some of that when I joined the Hyperlexia Parents Facebook group. I scrolled through photo after photo of what could have easily been a picture of my son. For once, I did not feel alone.

I think the pivotal moment for me, however though, was when a mother reached out to me on Instagram. I’m not even 100% sure how she found me, but I am thankful that she did. She literally stumbled upon hyperlexia because of something I posted on Instagram and it changed her world. I could feel her relief when I read her messages. She had finally had her aha moment and I helped her get to that, which is an incredibly rewarding feeling. I have since had countless encounters just like this one, even on the local level.

So I guess I realized that there were other parents out there struggling, just like me, after I had the confidence to start writing and sharing about hyperlexia. That is, afterall, when I started to get emails and messages asking for help and advice.

Was this the motivation behind starting And Next Comes L? How did the website start?

Actually, no. I started my blog in February 2013, after some nudges from a couple of mom friends. They always saw me posting these fun sensory activities on my Facebook profile and kept urging me to write a blog. So it started off purely as a hobby for me and as a place for me to share some of the fun things the kids and I did together. No fancy photos or anything. Rather embarrassing to look back at, honestly, but I had no idea what my blog would evolve into years later!

However, a month or two after J’s diagnosis, I knew that my focus for my blog had to shift. My disgust with the lack of hyperlexia resources and information was a huge motivating factor in the decision to shift my blog’s focus. I was terrified to be so open and raw about this part of our life though. I hesitated to hit publish on that very first hyperlexia post of mine. I think I was even in tears after I hit publish because I was just so nervous. However, it is a change that I am glad I made. I have been able to connect and help so many other struggling parents because of my decision to finally hit publish on that hyperlexia article.

Id just like to say Dyan how invaluable your website is to me. I would feel totally lost and overwhelmed if I didn’t have this to turn to. The work that you have put in from almost nothing is just remarkable. Are you seeing hyperlexia becoming more recognised by the education and medical professions now then when you started or do you feel there still a long way to go?

You are much too kind. I am so happy to hear that my blog has had the impact that it has had. It is something I never imagined would happen when I first started it.

Unfortunately, I have not seen any changes in hyperlexia awareness over the years. Having said that, though, I do know of a psychologist working on developing a hyperlexia questionnaire and a filmmaker working on a documentary on hyperlexia. Would I know about these things if it weren’t for my blog, though? Probably not.

My wish though is that more professionals know hyperlexia even exists. I would also eventually love to see it be a standalone diagnosis one day.

A stand alone diagnosis is my greatest wish too. So, what’s next for you? Do you have any ongoing projects that you can share with us?

Well, I like to wing most things so no major plans at the moment. My goal is still to work on my blog as much as I can. I would also like to go back and update my hyperlexia ebook. Maybe even self-publish it as a paperback one day. But it’s hard to find time to accomplish all of the ideas in my head!

I would love to see a book of yours on my shelf of hyperlexia references. That would be totally amazing. So for any parent reading this who feel their child may have hyperlexia, what would you encourage them to do first and foremost?

There are two pieces of advice I always like to give when it comes to hyperlexia.

First, write it out! Your child’s gift is to decode words so use it to your advantage. Invest in a whiteboard too! They’re such a valuable tool for these kids and are perfect for writing out steps and instructions to help them be successful.

Second, do not discourage your child’s interests or intense fascinations. Embrace those letters! Use those interests to teach new skills and help support your child.  (Read Dyan’s advice for hyperlexia parents here).

But I also highly suggest advocating hard for your hyperlexic child. Guaranteed, you will encounter numerous professionals and educators who will have never heard of hyperlexia. You will need to teach them about hyperlexia, unfortunately. It will help make it easier for your child’s needs to be met. FYI, I may or may not be known for handing out 60+ page documents on hyperlexia to people who have worked with J over the years…

You and I know just how extraordinary our children are, we love sharing stories one hyperlexia parent to another,  but to anyone else reading this, would you give us an example of a proud mama moment or moments for you?

Goodness, it is hard to pick just one proud moment, but he has taught me so much over the years. He has shown me how to appreciate the beauty of simple things. He has made me more patient and calm. His intense love for things like math and Pokemon remind me how important it is to celebrate diversity. It is my hope that we can all be that comfortable being ourselves.

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It’s been such a privilege for me to interview Dyan. She is a tireless ambassador for our wonderful little but ever growing community and I’m forever thankful to her. If any of this resonates with you as a parent/carer and you feel that your child may have hyperlexia, I would encourage you to visit her website for more information or pop a little comment below.

You may be at the start of an incredible journey.

If you would like to learn more about Dyan and her wonderful hyperlexia/hypernumeracy journey (as well as her amazing website) you can also find her here, here and here.

I could not let this moment pass by without linking to one of my favourite ever posts from Dyan. Do you want to know how she came up with the name for her blog, And Next Comes L? It is probably the sweetest most beautiful reason in the world and you can read about it here.

Dear Hyperlexia

Hyperlexia,

We have always had a complicated relationship you and I. In the early days, I wish I understood you better. Some days I wished I was more like you. Other days, I wanted you to just leave.

I’m sorry I did not understand your ways, your methods, your rules. I’m sorry I fought against you, expecting Neiva to conform. It was wrong of me. It’s not your way and so I failed, as you knew I would. You made me feel I was failing. You expected too much from someone who knew nothing about you.

You still never back down, change or compromise. Everything has to be done your way, to the letter.

It felt unfair, maybe it still is.

Yet….. at the same time….. I find you absolutely fascinating.

Now we know you a little better, I am so sorry for treating you so harshly. You have opened our eyes to a world that is just so beautiful.

When all becomes too much for her, you gave her a place to find solitude, a place full of numbers and letters. You gave her an intense obsession with the night sky and therein started a life long love of nature, another place of peace and solitude. In turn, you taught us to slow down and appreciate these things.

You gave her the gift of teaching herself to read. A gift that astounds all that know and love her. Thanks to you we have our beloved Enid, her loyal best friend. Thanks to you she sings Russian nursery rhymes, the alphabet backwards and finds number sequences hilarious. Her memory is phenomenal!

Life with you for her is so easy and, even though it is not easy for me, I’m ok with that. Paul understands you better than I do. I think you and he were childhood friends for a time. You are her biggest protector. She is immune to unkind words, unkind comments and puzzled stares thanks to you. I wish you could protect me from that. I know you can’t, but still it would be nice all the same.

If I could wish anything for you, more than anything else, I want more people to know about you. I wish you weren’t so misunderstood. Knowing your name after all the months of feeling lost was a monumental moment in our lives.  I wish you were recognised on your own merits. I feel you are distinguishable enough to earn this. I wish more people would advocate for you. I will do my very best to do that.

Now Neiva is getting older, you are less of an influence.

She now allows me into her world with her. I think she wants you and I to be friends. She now can be dissuaded from doing everything your way although she is still very loyal to you. I know you will always be a part of her life. I’m glad. I would be sad if you disappeared completely.

Thank you for being here.

Your friend always…..

Neiva’s Mummy xxx

For more information on Hyperlexia please click here
For the best resource for parents of children with Hyperlexia click here
To follow our journey on Instagram click here

Hyperlexia & Discipline

I can honestly say that generally Paul and I have a really positive attitude when it comes to Neiva. The seeming lack of social interaction or conversation doesn’t seem to overly concern us when we see how gifted she is in other areas. We can see her improving day after day with her conversational skills so as her development is heading in the right direction, we tend to not to over analyse the situation.

However, when as a mother, you get to a point where you think “I actually don’t know what to do about this” fear overtakes. I have struggled and felt completely lost and helpless in one particular area. An area where, in Neiva’s case, whichever route I take could either help or hinder her progress so far, and this left me terrified.

Discipline.

Over pretty much the month of May, absolutely nothing I said or did seemed to resonate with Neiva. I read forums and books, sometimes into the early hours, that dealt with the standard straightforward discipline tricks and tips for a neurotypical child. This, in hindsight, was a mistake. I tried patiently repeating myself to her. When that didn’t work, I resorted to raising my voice and using trusted key words like “enough” (which I only use at a total exasperated breaking point) which served me well in the past but even this didn’t have the same impact as before. Basic generic reward charts whilst great in the beginning started to wane as the week went on. The naughty step, whilst still enabling her to say sorry became a carousel of repeated bad behaviour; naughty step, say sorry, bad behaviour, naughty step, say sorry. You get the picture!

Interestingly, the “simmer down chair”, that we use when she is struggling to express her emotions and needs a time out still seemed to work, although anything that relates to Charlie & Lola is always a winner with Neiva.

My concern was if she isn’t listening to me with the little things, how can I trust her to listen to the big things. I could feel I was losing control of the situation. I couldn’t remember in the heat of the moment what worked and what didn’t, my reprimand wasn’t consistent, my ramblings became longer and longer and it was only when I looked at her beautiful confused eyes, did it hit me. She had no clue what she had done to warrant my rant! After a heavy dose of mummy guilt whilst holding her tightly through tears, I vowed to find a way to resolve this.

“Enough” was indeed, enough and I found myself on the receiving end of my own discipline. I needed to speak to the only group of people that would be able to help. The Hyperlexia Support Group.


The response I got was pretty overwhelming. Not only were there strategies I’d never even thought about, there were others (if I’d just thought a little harder at Neiva’s areas of strength) were glaringly obvious. I am happy to report we are now back on track. Here are a few of my tried and tested favourites so far;

For reward charts with my hyperlexic twins we focused on choosing a favourite number and getting toward that (counting in 5’s if it was a big number) or having a word that they could earn the letters of the word by good behaviour. Once they got the letters of the word or reached the number they could choose a toy from the reward box (a shoe box covered in coloured paper and filled with junk from the $2 shop… I would try to reward the good rather than punish the bad – NATASHA

Why wasn’t I utilising Neiva’s gift of letters and numbers? She loves counting her five times table at the moment and loves discovering the words in letters. Instead of a reward box we have a reward jar with all her favourite things to do (go for icecream, make jam tarts, go to the cinema, have a picnic, go to her favourite little toy shop). What an amazing way to implement a reward chart.

 

I wrote some house rules. Each rule was a letter. For example A. No splashing water out of the bath. B. Always hold hands when crossing the road. Etc. There were no more than 10 rules. If he broke a rule he had to go to his thought space (bottom stair), where the rules were posted and he reread them – LUDO

I loved the idea of house rules. Again this involves utilising her reading gift and a love of the alphabet. The “thought space” is such a positive spin on the dreaded naughty step and I absolutely love that it involves rereading the house rules. Again, positive reinforcement is working well for our children here.

When I first found out what Hyperlexia was I read somewhere that if they haven’t seen it written it may not exist. So we started writing everything down. Lists work great for completing tasks and as mentioned above “house rules” have been really beneficial to use – ERIKA

This has been the advice that has really struck a chord with me more than anything. This advice is key to anyone understanding a child with hyperlexia. We now reinforce an instruction by writing it down and showing her. Neiva’s teacher unknowingly confirmed this when she told me how well she had adjusted when changing to a new activity table in class. As her classmates are just learning to read, pictures are placed on various activity tables. (I.e a picture of a cake for the “baking table”) so they are easy to find. These pictures now include a written instruction underneath.

We’ve also implemented this for times we are out of the house. I’ll now regularly type an instruction into the notes section on my iPhone and show it to her to reinforce what I’ve asked.

Since my son has always responded to numbers I do a count down from ten . If he’s not doing what he’s supposed to I start counting ! By the time I reach three or two he’s usually trotting off to bed or doing what he’s supposed to do . Maybe this technique will help? – JENNIFER

“I’m going to count to three…..” was something that never worked with Neiva. However, reverse the numbers from 10 and it’s a very different story. This, to my total amazement, really works for us. We use it if she is taking her sweet time to do something or if she is being purposely slow.

Its now mid July and I feel back in control again. Yes, there are times where I feel she is starting to fall back into her May habits. Instead of encouraging that helpless feeling again I have to remember the well known parenting phrase “before you can expect your child to listen, you really need to listen to your child.” I’ve learnt over these past few months that there is always a reason behind Neiva’s behaviour and unlike a neurotypical child that can just tell a parent what is bothering them, we have to ask Neiva in a different way which requires a lot of time and a lot of patience. By implementing the above strategies which are catered especially to her and her hyperlexia, this has eased her anxiety so much that when a situation arises that calls for discipline, its easy to discover what the problem is. By using strategies that she loves, she is a much more happy and contented child.

I want to say a special thank you to the parents on the Hyperlexia Support Group. They are a continuing source of help and encouragement. Hyperlexia is a beautiful gift for sure, but it does comes with many challenges. If you suspect your child has hyperlexia and need help or advice on where to go from here, please contact Dyan Robson here.

Social Stories, Sequencing & The Supermarket

For the most part Neiva is such a laid back and quiet natured girl. However, when anxiety strikes, its strikes sudden and loud. Anxiety for Neiva is most common when we are at a supermarket. Most people assume it’s a sensory overload of noise but noise isn’t something that worries Neiva. Its busy crowds.

As she looks older than her tender age of five, random loud outbursts can be really embarrassing. To a random passerby, in that moment, she can look like a child with a bratty attitude. She certainly isnt that. Her true personality is anything but.

I don’t need parenting approval from strangers but I certainly don’t want someone going away talking about the “spoilt child in the supermarket today…” when it is something that she has no control over. I also needed to know the difference between a outburst due to stress and anxiety and a deliberate willful disobedient one.

We needed to make some adjustments and like everything else in life, its all about the preparation.

  • First we changed supermarkets from a big store to a smaller one. Neiva is very rarely overwhelmed in our smaller supermarket. It’s familiar, quiet and she knows where everything is.
  • I always try to have a list with me to make sure our shop is done quickly and efficiently.
  • We always try to do the same routine from going through the same door to the same path of aisles (as it’s a small store, it doesn’t take us long)
  • Neiva is in charge of the pull along basket and I get her to look for the things we need which distracts her for a little while and if I’m really organised that day (and because of her reading ability), there may be a written list.
  • We will always finish at the same bank of self service checkouts by the magazines so she can go look at them whilst I quickly run my shopping through at the side of her.


Social Stories & Sequencing

 Social Stories are great for preparing a child for any regular real life situation.

Using these stories and sequences she is able to know what’s coming next, eliminating any frustration and calming any anxiety. I made one especially for our supermarket trip and will add more destinations as and when I feel there’s a need.

You will see from the story that I haven’t written anything in the last box. This is for when we have time to go to the cafe afterwards. Neiva would be able to read anything I put in the last box and would then be expecting to go to the cafe every single time. By keeping it clear gives me the flexibility on days where I am pressed for time.

It is only a quickly made basic visual and because it’s made of card and paper it’s a bit scruffy and sorry looking. I will  update this shopping social story for a new one when my weeks of hinting to Paul for a laminator has finally paid off!

For more information on social stories click here. For help creating social stories specifically catered to children with hyperlexia click here

Hyperlexia & Reading Comprehension

Neiva’s ability to read literally came out of nowhere. I think we really started to notice when she was almost 3. We were reading a lovely book called “Ten in the Bed” when she just spontaneously started to read, word for word!


At first we put it down to her knowing the familiar song. However, in this book, the words were slightly different to the song she knew and sang so well. We continued to try different books and the outcome was always the same. She read the words with total ease!
As time went on and the more she read, the more we realised that she in fact had an extraordinary visual and auditory memory and was using this to “read”. Despite this fluent decoding of the written word, we weren’t actually sure whether she was actually understanding what she was reading. Now we were facing another issue – comprehension.

Children with hyperlexia do find it hard to understand:

  • Pronouns (they will most likely use reverse pronouns. They may also refer to themselves in the third person).
  • Inferences (not being able to read between the lines and draw conclusions)
  • Echolalia (parroting long sentences and phrases without necessarily understand its meaning)
  • Emotion in the story (being able to interprete what the person might be feeling)

Now Neiva is older, she is successfully working her way through this list. It is still an ongoing process. She still struggles with inferences, and she will use echolalia when she is anxious but she will get there in her own time and is heading in the right direction. We are so proud of how far she has come in such a short space of time.

Strategies that can help reading comprehension…

A story preview… So before we begin reading a new book, instead of jumping right into the words, we would begin by looking at the cover, the title and the pictures inside. This is great for getting her to vocalise her own ideas as to where the story is going. By going over the story briefly also gives structure and sequence, something that Neiva particularly really thrives on.

Making Connections… An important part of reading comprehension is for a child to make the connection between the text and their own experiences. So, using the story of red riding hood as an example, when talking about the forest, Neiva can relate to the sights sounds and smells of her own experiences playing in the wood. That particular experience will help connect her to the story and in turn help her to comprehend the words she is reading.

Recap… As mentioned in a previous post children with hyperlexia struggle to answer “wh” questions (where, when, why, what and who) so to ascertain how much Neiva has understood when reading something new has to be done in a different way. Instead of asking for example “why did red riding hood walk through the forest?” I would have to say “red riding hood went through the forest because…” and she would then finish that sentence.

Neiva is learning to respond to “wh” questions. Usually, we will practice these when reading a story she knows well, as she already has the answers she just needs to know how to respond to the question.

Charlie & Lola: Ep. “I slightly want to go home”

“I went to the moon” game…  This game is played by Lola and Lotta in an episode of Charlie & Lola. The first person (usually Neiva) starts by saying “I went to the moon and I brought an apple” The next person would then say “I went to the moon and I brought an apple and a mermaid” and it continues until one person can’t remember the list (usually me). I love this game because not only does it encourages a continued conversation, it also teaches her the proper use of pronouns. “I (instead of mummy/neiva) went to the moon” Finally, it encourages turn taking which is great for Neiva who gravitates to solitary play.

You can find magic wherever you look. Sit back and relax, all you need is a book

– Dr Seuss

 

 

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