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ABOUT...

The Illustrator - Karl Gabriel

The following was written by Karl's mother; Sanya Gabriel. So many people have asked me about Karl but I did not feel comfortable telling his story. Sanya tells it as only a mother could.

 

 

Diagnosed with Autism and a severe speech delay in expressive and receptive language at age 3, there was a time when we wondered if Karl would ever talk in sentences, if he would be able to follow instructions or answer a question. Just to hear him call for us as ‘Mum and Dad’ and to hear what he would sound like as a little boy was a dream come true.

 

The last 4 years have been an endless array of therapies from mainstream approaches such as Speech Therapy, OT, PECS, Makaton and ABA to non-mainstream remedies aimed at healing the digestive system, nourishing and detoxing the body. We have used toys, books, music, anything he loves in an effort to draw out words where ever we can. Engaging him slowly but surely in using more words. Some of our heart melting and funniest moments have been when Karl realised that by saying our names he could make us repeat musical notes after him, to this day Karl will say ‘Mum Dad - Do Re Mi, Fa sharp So La’ in so many combinations of notes and we repeat after him so happily (hearing him say Mum and Dad so clearly is music to our ears).  

 

 

 

 

Karl is a gorgeous, happy, loving and innocent 7 year old with energy galore. He loves to play with Thomas the Tank Engine, Bob the Builder and marble runs. Karl enjoys going to the park and particularly the swing. He loves to imitate the Wiggles and The Hooley Dooleys, whilst watching himself in the mirror.

 

The first book Karl read was the Very Hungry Caterpillar and it was through his love for Eric Carle and Lynley Dodd books and an interest in the piano and music notes that he started to use more and more words. Since the release of the i-Pad he continues to amaze us with his abilities with technology, the way he navigates both the i-Pad and the computer, working out what to do, is inspiring to see.

 

A healthy baby, developing normally for the first 18 months, Karl made all the usual milestone as did his older brother. He would make eye contact and engage with us and our photos clearly show this. Sometime around 18 months we noticed Karl withdrawing, almost like he couldn’t hear us.

 

Due to several ear infections and high fever at this age we were concerned about hearing loss and so we started visiting specialists for various tests. Due to Karl’s strength with numbers, letters and putting together words with magnetic letters his paediatrician took time to observe Karl. In hindsight, Karl’s sensory issues increased in severity over the years (which is why I often give credence to theories around a link between digestive issues/toxins in the body and Autism).

Karl continues to develop and surprise us every year. Karl predominantly uses single words when he wants something such as ‘water’, ‘sausage’, ‘chocolate frog’ and may even use a few words together like ‘Mums car bowling’ or ‘big Hungry Caterpillar book’ when necessary to get his message across. Karl is able to answer ‘yes’ to questions and for ‘no’ he has worked up from making shouting sounds to saying ‘stop’.

 

Karl has always had a fascination for numbers, letters and languages. Recently he has learnt to count to 10+ in many languages and loves to watch videos of The Very Hungry Caterpillar in different languages. Karl will recite the story in Japanese, French and German from You-tube clips… and to Karl’s delight we sourced a French copy of the book. Although he can read, our focus is now on comprehension, as simple questions like ‘what’s your name?’, ‘how old are you?’ and simple instruction can be difficult for him to understand.

 

 

Karl loves tickles and raspberries and has a beautiful giggle. However, it’s not always smooth sailing, in addition to the communication issues, Karl has sensory issues with sounds, tastes and textures, stimming behaviours and very low awareness of dangers. Some of our toughest times have been when Karl is crying and inconsolable and not being able to communicate with him to find out what is wrong. In those moments I have been reduced to tears and pray to God that my boy be blessed with some words to be able to tell me what is wrong. One time he had been stung by a bee and only by chance that I had seen the bee on the trampoline as he cried, and then by watching his body language worked out the site of the sting. With his sensory issues even the distant sound of a siren will set him off and frustration over things not working can result in a meltdown or aggression towards anyone within reach.

 

As I say to my older son who is ‘neuro typical’ (a new word I‘ve come to know since Karl’s diagnosis), ‘Imagine what it would be like to be in his place, quite aware in many respects, but then unable to find the words to communicate or to explain yourself’. For my older son, I often liken the sensory issues it to his dislike of the scratching sound of a knife on a plate that gives some people the shivers, or nails on a chalk board, that’s what it’s like for Karl with particular sounds.

 

Through all this we have come to appreciate the important and simple things in life more than ever before. To be thankful for what we do have in our health. To keep trying in the smallest of steps hundreds of times over, never give up. Even at times when feeling down and “it’s all so hard”, tomorrow is a new day and who knows what surprise is install.

 

We celebrate every new word, especially any unprompted words and to see him enjoying other people and peers company and truly engaging with eye contact and smiles is pure delight. I will always remember the tears of joy when in pre-school Christmas concert Karl held up a star like all the other kids – this was such an achievement. Most importantly, whatever the pace, Karl keeps learning new things every day and will continue to do so and that is surely something to look forward to. Last but not least, just like our older son Thomas, Karl has a smile that melts the heart and gives hugs that warm the soul.

The Author - Justine Edward

I wrote Shine because I wanted to give voice to children who struggle to be heard. I hope that Shine will encourage every reader to believe in themselves and to see that we all have a light within.

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