Hyperlexia & Echolalia

My daughter’s very first love happened at aged 2. We were having an afternoon at home, CBeebies was quietly playing in the background, Neiva was on the floor playing with her toys, a ‘nothing out of the ordinary’ day.

Then, all of a sudden, out of nowhere, she began to laugh, a real long hearty laugh.

You have to understand, up to this moment Neiva hadn’t really shown any particular interest in anything. No favourite comforter (other than her dummies), no favourite food (she ate anything and everything with the same gusto and enthusiasm), no favourite toy (she would play with everything equally and without favouritism). But, this day, something she saw and heard stopped her in a tracks and put the biggest smile on her face, clapping her hands with excitement.

I looked up. It was an episode of Charlie & Lola called ‘I’ve Got Nobody To Play With’. Lola is trying to play by herself with two walkie-talkies, running back and forth between beds asking for pink milk. I played it again. Sure enough, the belly laughs came. Neiva was up on her feet clapping and bubbling over with excitement. You can see a recording of her here. We still have absolutely no idea why that particular part made her laugh. She is now 6 and still laughs uncontrollably at this scene.

From that moment on, Neiva’s intense love for all things Charlies & Lola began to blossom. We had no idea just how much those two beautifully quirky little characters would soon help us communicate with our gifted little girl.

What is Hyperlexia?

Neiva has Hyperlexia. In short, Hyperlexia is a syndrome which is closely similar to autism, though it has very different defining characteristics. These children are highly intellectual but have to work extremely hard in social situations. What makes Hyperlexia unique to other types of syndromes on the autism spectrum, is the gift of self taught reading, usually before the age of 5 (Neiva taught herself to read when she was almost 3 years old). This, combined with a highly developed visual and audio memory, and an unusual fascination with letters, numbers shapes, colours and maps.

One of the negative sides of Hyperlexia is a lack of everyday conversation. Neiva would very rarely asked for things and if she wanted something she would just simply point, give a one word answer, or just attempt to get what she wanted herself. But, this was all soon to change thanks to Charlie and his little sister, Lola.

What is Echolalia?

Echolalia is the term used to describe when a child repeats or imitates what someone else has said. For example, if you ask the child “Do you want a cookie?”, the child says “cookie” instead of “yes”. There is also a type of echolalia called “delayed echolalia” which is when the child repeats something he has heard before, even though he did not just hear it. For example, a child may repeat a line from a favourite movie even though that movie is not playing currently (Source: Speech & Language Kids). It was this type of delayed echolalia that we could relate to everyday moments with Neiva.

Echolalia is clinically described by some as a “meaningless repetition of another person’s spoken words”. How cold! I could not disagree more. This description is reckless. Every single sentence or phrase that a child uses echolalia to communicate with the world is not ‘meaningless’. They have specifically chosen to speak those words for a reason. Decoding the meaning of those words, for us as her parents, meant that we had to turn this communication barrier into a game, a puzzle, instead of a chore. Some phrases were self explanatory, others took some time to unravel, but the beauty of echolalia is, once the message has been decoded, it very rarely changes its meaning. Children with hyperlexia have an incredible memory. Astonishingly so. So for them, that particular phrase is set, like indelible ink.

Types of Echolalia

Immediate Echolalia is when a child repeats a phrase you have just said, for example, “would you like an apple or an orange” they may reply “apple or an orange”. It is important to realise that she is not saying this because she does not understand you. It is her way of saying ‘I’ve heard what you said, I am just processing that information and need a minute to do that’. Pausing for a few seconds longer before asking again really goes a long way to helping a child using immediate echolalia.

A practical solution for a situation like this would be a visual aid. So if I wanted Neiva to choose between an apple or an orange, I would have one in each hand and she would choose. If she chose an apple for example I would then hold the apple in front of her and say “I would like an apple please mummy” and she would repeat the phrase whilst taking the apple. Very quickly she would know that for me to release the apple in my hand she would have to ask for it. Again, because of her incredible auditory and visual ability, this situation and accompanying phrase would be banked in her memory.

Since hyperlexia is a self taught reading ability, we use this gift in situations where there are no visual aids to help. We would simply and clearly write down her choices and she would read and decide this way.

Delayed Echolalia… is the repetition of phrases after a period of time has passed. It could be months or even years after the phrase was originally heard and may randomly be spoken by the child at any time or any place. Below are some common reasons why a child may use delayed echolalia.  

….. for personal entertainment

This is something that we really relate to. Neiva from the age of two would repeat large sections of Charlie & Lola episodes days and weeks after watching it, excitedly reciting and reenacting word perfect out of nowhere and for seemingly no apparent reason.

I found this fascinating to watch. It was like she was in her own private movie theatre in her mind, experiencing escapism of the best kind. For some, this type of delayed echolalia is a child’s way of self soothing, often labelled under ‘self stimulatory behaviour’.

…..to convey a message

Some phrases were self explanatory. “I’m really ever so not well Charlie” she would say, Lola’s voice mimicked to perfection, or, “It is completely absolutely boiling” for when she was (of course) too hot.

Another obvious, well used, phrase was when it came to combing her hair after a bath. Neiva, despite having the most gorgeously beautiful long hair, detests the upkeep and responsibility that comes with it. “I like my hair completely the way it is” or “not the brushing Charlie, PLEASE not the brushing” were commonly asked when it was time to comb that enormous mane of hers. In this situation she would always ask if she could be “Princess No-Knots” another phrase from this episode, which to her translated ‘please stop brushing my hair now, that’s quite enough’.

My personal favourite phrase Neiva uses happens whenever I ask if she wants to go somewhere or do something that she is really excited about for example: a visit to the Ice-cream Farm or her favourite past time, to have a bubbly bath. Her smile slowly grows until it finally reaches her eyes then she replies, heartfelt and slowly “I really….really absolutely do”. It melts my heart every single time.

…. to determine mood or emotion

Some phrases though, required more thought. Whenever Neiva was sad or frustrated she would shout loudly and definitely “its my zoo house and my town too Charlie!” For weeks we did not know what she was trying to say. All we knew was that she was always sad usually with tears when she said it, until one day we watched the episode. Charlie was uncharacteristically mean to Lola and it made her feel so sad. So although the phrase Neiva was saying did not relate to anything going on in the real world, to her the phrase made her remember that Lola was sad and that was the message she was trying to articulate to us.

….. to process and compartmentalise her memories

For a child with an incredibly active visual and auditory memory like Neiva, the every day processing of information can be overwhelming. These incredible brains are storing masses amounts of information every second of every minute of every day and need to be sorted through. For this to happen these children use delayed echolalia as a way of processing the memories that bubble up to the surface and need somewhere to go, like folding and putting away mental laundry. For a parent of a child who finds conversation difficult, delayed echolalia is a life saver. A window into your child’s thoughts and feelings and a wonderful insight into her school day for example. For Neiva, I know she feels so much better when her thoughts and feelings have been processed and she can move on to a new day.

Today…..

Neiva still uses echolalia from time to time, more so during the school day if it gets too much for her or if a regular routine changes. She has the most incredible teacher (Miss T) who has been by her side since nursery, who knows exactly how to comfort and reassure her. We are incredibly lucky to have her in Neiva’s life.

Neiva will be 7 this Autumn and still adores Charlie & Lola and I’m so pleased she does. She has an extensive collection of Charlie & Lola books that she adores and reads most nights. I will be so sad when she eventually outgrows them. However, I am reassured that when she is all grown up, she will look back at her childhood and remember with great fondness just what a huge part of her emotional life they were during these important early years.

These photographs were taken at the beautiful Newby Hall in Yorkshire, during the Lauren Child Summer Exhibition that is currently running from July until September 2018.

To follow our journey on Instagram click here

Children & Homeopathy

Homeopathy is a natural form of medicine that has been used for over 200 years. It is based on the principle of ‘like cures like’. In other words, the ailments are treated by tiny doses of natural substances that in larger amounts would produce symptoms of that ailment.

“The holistic nature of homeopathy means each person is treated as a unique individual and their body, mind and emotions are all considered in the management and prevention of disease. Taking all these factors into account a homeopath will select the most appropriate medicine based on the individual’s specific symptoms and personal level of health to stimulate their own healing ability.” – British Homeopathic Association

Homeopathy has been a huge part of Neiva’s life ever since she was a baby. She responds so well to the remedies. I was introduced to homeopathy by my sister in law after watching how well her children responded to them. If you would like to know more about homeopathy and especially homeopathy in children, I can highly recommend the following books below that I refer to often. What I cant find in one I will almost always find in the other. They make a pretty good team.

 

How to use Homeopathy

It is perfectly achievable for parents with very little experience in homeopathy to prescribe a remedy to an unwell child with everyday common ailments. The key is to be led by the verbal and physical symptoms the child is presenting. Ask your child questions such as

  • where does it hurt?
  • which side?
  • what does the pain feel like?
  • is it worse for sitting up or lying down?
  • what circumstances led to there feeling ill?
  • when does it feel better? when does it feel worse?


Characteristics to observe 

  • temperature
  • perspiration
  • sleep pattern
  • most comfortable position
  • need for fresh air/adverse to cold
  • thirst for hot or cold drinks?
  • appetite
  • stool & urine colour texture and regularity
  • energy
  • colour and appearance in general

The more questions are answered the easier you will be led to a specific remedy with specific characteristics. At this stage, you will be able to select the appropriate remedy.

Potency Selection

Homeopathy remedies consists of three dosages; 6th, 30th and 200th. The general rule of thumb is the lower the potency the more frequently you will need to give the remedy.

  • 6th: This is the lowest potency with a gentle and steady action.
  • 30th: This is a medium potency (generally the dose that is effective in most cases)
  • 200th: This is the most powerful potency and generally given in situations of acute pain or intense symptoms (for example for a high fever Belladonna is generally given in 200th potency).


How to give the remedy

The remedies will be in the form of a small sugar pill. Neiva takes them this way although as a baby she took them in soft tablets that dissolve on the tongue. There are important things to remember when giving a remedy:

  • the remedy should go straight into the mouth and must not be touched by hand. The best way is to use the cap of the bottle pour one tablet into the cap and then straight into the mouth.
  • do not give the remedy 10 minutes either side of eating or drinking
  • do not give your child two different remedies at the same time

For acute symptoms, give the remedy every couple of hours.

How to store the remedies

Unlike conventional medicines, there isn’t a worry of accidental overdose and the remedies are completely natural. However, from the beginning it is important to stress to the child that these are a form of natural medicine and should be treated with respect. Store the remedies in a dark cool place away from strong smells.

The remedies we use are Ainsworths. You can find them here.

For more information on homeopathy please visit the British Homeopathy Association here.

Neiva & Elderflowers

It’s hard to believe whilst I sit here typing, listening to the summer rain pattering against the window, just how gloriously beautiful the afternoon was picking elderflowers only a few days before.

If there is one scent that smells of an English summer its elderflowers. Tiny beautiful frothy fragrant white flowers made from tiny blossoms appear from May onwards, with the black purply berries taking over from August.

Whilst we love some of the organic shop varieties, I really wanted to have a go at making it myself. I also wanted Neiva to have the whole experience. From picking to steeping, straining then decanting to drinking the final product. 

Tips for picking Elderflower:

  • Pick the flowers preferably around midday when the suns heat is on them. The warmth of the sun enhances the beautiful perfume.
  • Make sure the flowers have plenty of blossom on them
  • Do not gather after a rainfall. It’s the pollen that gives the flower flavour and the rain will wash that away.
  • For the same reason as above, do not wash the flowers. Any insects or debris hiding amongst the tiny petals will be strained out later.

So after consulting my Hedgerow Handbook and with a beautiful sunny afternoon ahead of us, off we went to find our bounty. There were so many elderflowers to choose from we lost track of time and only when our basket was full to bursting did we venture back. 

Elderflower Cordial

For this recipe you will need: 

  • 1.5 sugar
  • 1.7 litres water
  • 2 unwaxed lemons (sliced)
  • Muslim cloth or jelly bag strainer

Method 

    1. Add the sugar and water to a pan and simmer gently until the sugar has dissolved. 
    2. Turn off the heat and add the elderflowers (flower heads down to submerge them completely) and the lemon slices, cover and leave to sit for 24 hours to infuse.
    3. Strain the liquid with a muslin cloth.
    4. Decant into a glass bottle and top with either water, soda water (for elderflower presse) or champagne/prosecco (for a grown up version!)

    This should keep for up to 6 weeks in the fridge although I doubt it will be there that long. I found the flavour is enhanced, very intense and extremely delicious in comparison to shop bought cordial. So sweet and so very fragrant.

    Making elderflower cordial certainly isn’t a quick process, however as well as being a fantastic sensory and learning experience, it also taught Neiva to learn patience in a beautiful and fun way. 

    Good things do come to those who wait…..

    Screen Time vs Green Time: The Importance Of Nature In Childhood …

    It’s important to note before reading on that I am certainly not anti-screen time. Neiva loves her iPad. She plays games and watches programmes and videos. Although we don’t have a TV in our living room, we do have a TV upstairs in our bedroom where we enjoy many wonderful family movie nights.

    That said, if Neiva does have too much screen time, there are definite changes in her behaviour. Contrast this with where she chooses to spend most of her time, outside, and she is a much calmer and more cooperative child. 

    We are fortunate to live in an area where (despite living in a noisy little town) we can within minutes easily access a quiet park, take a walk in a local woodland, in a field surrounded by rolling hills and bird song, by a stream, anywhere where we can escape from car horns, percussive drilling and those obnoxiously loud mopeds (a particular pet peeve of mine).

    “Children cannot bounce off the walls if we take away the walls.” – Erin K. Kenny, Forest Kindergartens: The Cedarsong Way

    I have just finished reading a brilliant book written by a man named Richard Louv who coined the phrase “nature deficit disorder”. His book, The Last Child In The Woods is a frightening read into how children today have lost touch with nature. In his book he relates a story. He was talking to a group of parents who were expressing concern about how their children’s childhood is vastly different to their own.

    One man in the group, a quiet father raised in a farming community spoke up and said: “where I grew up a person was naturally outdoors all the time. No matter which direction you went, you were outdoors, in a plowed field, a wood or a stream. Now the park we grew up in is a metropolitan area. Kids haven’t lost anything because they never had it in the first place. What we are talking about here is a transition made by most of us who grew up surrounded by nature. Now nature is just not there anymore”. (The Last Child In The Woods, Richard Louv: page 12)

    That sentence stopped me dead in my tracks and I had to read it again! As a child growing up in the 80’s I do remember playing outside for hours with my brothers and sister. Having to be called in when it got dark, my brothers regularly playing in a nearby wood. But Neiva’s generation may never even have those memories. How can they miss something they have never had?

    So what are the benefits of playing in nature? The list is exhaustive. However, I read an article by the Child Mind Institute written by Danielle Cohen which beautifully sums up the most important reasons. The following list is taken from her article:

    It builds confidence. The way that kids play in nature has a lot less structure than most types of indoor play. There are infinite ways to interact with outdoor environments, from the backyard to the park to the local hiking trail or lake, and letting your child choose how he treats nature means he has the power to control his own actions.

    It promotes creativity and imagination. This unstructured style of play also allows kids to interact meaningfully with their surroundings. They can think more freely, design their own activities, and approach the world in inventive ways.

    It teaches responsibility. Living things die if mistreated or not taken care of properly, and entrusting a child to take care of the living parts of their environment means they’ll learn what happens when they forget to water a plant, or pull a flower out by its roots.

    It provides different stimulation. Nature may seem less stimulating than your son’s violent video game, but in reality, it activates more senses—you can see, hear, smell, and touch outdoor environments. “As the young spend less and less of their lives in natural surroundings, their senses narrow,” Louv warns, “and this reduces the richness of human experience.”

    It gets kids moving. Most ways of interacting with nature involve more exercise than sitting on the couch. Your kid doesn’t have to be joining the local soccer team or riding a bike through the park—even a walk will get her blood pumping. Not only is exercise good for kids’ bodies, but it seems to make them more focused, which is especially beneficial for kids with ADHD.

    It makes them think. Louv says that nature creates a unique sense of wonder for kids that no other environment can provide. The phenomena that occurs naturally in backyards and parks everyday make kids ask questions about the earth and the life that it supports.

    It reduces stress and fatigue. According to the Attention Restoration Theory, urban environments require what’s called directed attention, which forces us to ignore distractions and exhausts our brains. In natural environments, we practice an effortless type of attention known as soft fascination that creates feelings of pleasure, not fatigue.

    We have experienced this first hand with Neiva. Learning and being immersed in nature is an essential part of childhood. So whilst screen time does have its place in today’s world, it also needs to know its place.

    references:

    Hyperlexia & Bedtime

    Whilst routines are beneficial for any child, children with any type of sensory issue thrive on it. The world is an unpredictable place, routine and order relieve a lot of anxiety and stress, giving back some control for what is happening in the chaotic world around them.

    Neiva is a child that thrives on routine.

    Bedtime is a really important area that we try and stick to the same routine as much as possible. Sometimes, things crop up and we cant do anything about it but for the most part we try and keep to the same system. Here are some of the things that have worked for us:


    Reward Chart
    Neiva loves Charlie & Lola, in fact so much of her communication is related to an episode she has watched and memorised and fortunately for the most part, she uses it in context. For example if she is hot, she will tell us she is “completely absolutely boiling”.

    In one of the monthly Charlie & Lola magazines we buy for her, there was a whole section dedicated to “Bedtime”. Included in that was a page entitled “Bedtime Reward Chart” I cut it out and framed it. We ordered a set of Charlie & Lola reusable reward stickers from eBay and we were ready to go.

    The downside to taking something out of a magazine is that you cant change the order or content to adapt it to your personal routine (however, there are plenty of free printables on the internet that do this). Fortunately for us, the order and content was perfect for us. And of course, being the hyperlexic superstar that she is, she reads the instructions beautifully.

    So, Neivas bedtime routine is as follows:

    She has to:

    • “make my room ever so completely tidy”
    • “have a very bubbly bath” (although showers are necessary if we are pushed for time, generally the bath wins)
    • “put my pajamas on completely all by myself”
    • “brush my teeth extremely carefully”
    • “read a lovely bedtime story”

    I like this routine. It works for us. Its simple and covers all bases. Some days we do have to skip the bath completely but since the rest of the routine is covered we generally get through this without much fuss.

    There are days where we are back too late to start the set routine. As mentioned above when skipping bath time, as long as the majority of the list is covered we are usually ok. As long as we end with a bedtime story, bedtime is straightforward.

    Bedtime Story
    Reading a story to Neiva isnt a chore, its our favourite part of the day. And maybe this isnt the “thing” to do to encourage independence, but as they are only little once, we do often read her to sleep. Naturally, being a child of routine, she has her favourites. “We’re Going on a Bear Hunt” and “The Little House” are regularly read. Currently we are reading “The Velveteen Rabbit“. As far as bedtime stories go, this is such a winner on so many levels. For Neiva, who loves the outdoors and nature, she adores this book. Its so gentle and wistful and dreamily written, the perfect bedtime story. Its long enough for her to go to sleep to, but short enough to get the ending (and it is such a good ending)


    Finally, there are the nights where despite all the planning and routine following, she is just out of sorts and there is nothing we can do about it. So, for those nights its a few drops of Bach Night Remedy and an extra dose of patience.

    My reward? A lovely glass of red wine waiting for me downstairs.

    L x

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