My friend Kaytee and her son Jaxon show we should all do our bit to help those families who may be struggling
THERE is a woman I initially followed on social media, then had the pleasure of meeting in real life at an event. Since then, barely a day goes by where I don’t think about her.
Her name is Kaytee and goes by @thenursemum on Instagram. She has a gorgeous son called Jaxon who is two. Jaxon has a very complex diagnosis comprising of a range of special educational needs and physical disabilities.
The moment I started to follow Kaytee and Jaxon’s journey I fell in love with their bond, her fight and the sparkle in his eyes.Yet my heart broke to see the struggle they had just to get their basic needs met – access to carers or respite so that Kaytee could get more than two hours sleep at a time.
I was overwhelmed with the wars she was having to wage. My son Frey has suffered communication delay, struggled to get a diagnosis and faced educational hurdles, so I know from experience just how draining the fight can be. It can be isolating and scary – and I experienced only a fraction of the struggles compared to this amazing mum.
I remember wanting Frey to be included in everything his peers could do. I knew due to his communication and hearing problems it wasn’t always easy, enjoyable or even possible but I needed him to have a chance. Kaytee was fighting for a chair so that Jaxon could be at his peers’ eye level when they were playing and not have to lay on the floor or be held up by his mum. It hurt to see how something a simple as a chair could shut Jaxon out from the simplest things.
It emerged this week that £400million over the past four years has been diverted from mainstream education to accommodate the rising amount of funding needed for special needs pupils.
But aren’t special educational needs still educational needs? All of our children should have the same right to education. Kaytee posted about how she had to fight to get her son access to education I had always taken for granted.
I understand we cannot carry the weight of the world on our shoulders but surely it’s our job to take a bit extra here and there to help those whose load is already crushingly heavy.
Kaytee is no victim and neither is Jaxon. They are proud and funny and he is exceeding expectations daily – mainly because of Kaytee’s attitude.
But how long can she carry on campaigning on issues affecting children with special needs and their carers, care for her son and try to work – all on four hours sleep a night?
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And there are households up and down the country who are similar to Kaytee and Jaxon.
We can use our voices and our energy and even share a post from a friend or a stranger on social media who may be struggling and asking for help.
We can show we care and that these families are not alone.
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