Nature Curriculum: Caterpillars

The first two weeks in May in our nature curriculum are dedicated to Caterpillars. This is so exciting for us because a few days ago we purchased our very first butterfly garden complete with 5 live baby caterpillars. They are indeed very hungry caterpillars because they spent the first week just eating, eating and more eating. The whole experience is fascinating to watch and something I think every child should experience.

We are keeping a butterfly journal so we can closely monitor these beautiful creatures. Neiva has even given them names. Say hello to Leo, Betty, Corbie, Arthur and George. Unlike the tadpoles from our previous months that are more slow growers, caterpillars literally grow right before your eyes. We also studied the life cycle of a butterfly and no-one is ever too old to reread the classic The Very Hungry Caterpillar.

Our reading book for the week was the very simple worded and informative book From Caterpillar to Butterfly. Each day the children in the classroom watch in amazement as the caterpillar eats and grows, shedding its skin several times, until it disappears inside a shell that it creates for itself. For a long time nothing seems to be happening. But one day the chrysalis breaks open, and a beautiful Painted Lady butterfly flies out of the jar. We also looked at the beautiful illustrations in the book A Butterfly Is Patient

For poetry reading we looked at two very short pieces of poetry. One aptly named Cabbage Bite by Geoffrey Summerfield and the other by NC Wickramasinghe simply titled Butterflies. Both pieces can be found our very well used book I Am The Seed That Grew The Tree, a nature poem for every day of the year.

Do check in with us in a weeks time for our week dedicated to butterflies where hopefully we have documented successfully the transformation of our caterpillars to beautiful Painted Lady butterflies.

Next week…..Ants!

When A Flower Does Not Bloom

This has been such a difficult post to write. It is very bitter sweet. For the last four years, Neiva has been in primary school. A wonderful one. One of the best. I have never seen a school so committed to the well being of its children. A school that has given Neiva all the support they could possibly give. A school that gave us the kindest, most patient and loving support teacher that has been with her since her nursery days and held her hand all the way through to today.

Why then, have we made the decision to take her away from all this?

The best way I can explain why is with an illustration. I’d love to take credit for it as it perfectly describes a child with sensory overload. I heard this in a Facebook group for home educators and it really resonated with me. So here is is.

Imagine you are terrified of spiders. A very real phobia. The very thought of one sends you into a panic. Even the mere mention sends your heart rate rising. You have butterflies in your stomach, you start to tremble. Panic starts to creep in. All your senses are now heightened. You are told to go into a room and sit at a desk. You are going to learn something new. Its going to be fun. You are going to be taught by the best teacher in the world.

Now imagine, you open the door and that room is filled with spiders.

That is how Neiva feels in a general classroom. Even with the best will in the world, she will struggle to cope in this environment. A quote you will have probably seen going around social media is “when a flower does not bloom, you fix the environment it grows in, not the flower” This, is us.

Wherever possible, the school made provision for Neiva to learn outside in a more natural environment. Anyone who knows Neiva knows she is calmed, soothed and comforted when immersed in nature. To build on this, we have made the decision to home educate Neiva on a nature curriculum starting March 2019.

The last few weeks Paul and I have been planning. To capitalise on outdoor learning, we have converted our summer house in the bottom of the garden to a school room. It’s a wonderful space that we can dip in and out of the garden throughout our learning time, as a lot of our lessons will be garden based. The school room also gives a designated learning area and a good structure for Neiva who thrives on routine. She will have a clear vision on when her learning time starts and ends. It will also save my sanity, meaning my house will stay tidy. We are in the processing of creating a mud kitchen and I will be writing a whole post on it when its finally finished.

The curriculum we will be following is Exploring Nature With Children. This is designed to be a step by step guide to an entire year of nature learning. To support Neiva’s academic learning we have subscribed to Twinkl, a primary resource that is used in most UK schools. Every fortnight she will be attending Forest School, and of course we have our much loved National Trust Membership.

Saying goodbye to the teaching staff and her best school friend, a lovely boy who has been her friend since they started nursery together, was so difficult. We are going to make an effort to keep in touch. At the same time, we are excited for our new learning adventure to begin. I will be using this space to document our journey, so I hope you will follow along with us. You can stay up to date by subscribing below and of course following us on Instagram.

If you have any questions, just leave me a comment below.

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

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.

_______________________________________________________________________________________

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
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