Reaching for the stars
Donation protected
Daunting isn't it...the target for this fundraiser. I've asked myself so many times, "how on earth will we manage it?" and the truth is, I don't know. I know only one thing: I can't give up on him.
Many of you know I've dedicated my life to helping others; working extensively with children with special educational needs, fighting local authorities to get the correct support, battling red tape to improve provisions, shining a light on areas so others in the future don't ever feel lost in the darkness.
Right now, that darkness is where I am...and very lost.
From 4 months old, I noticed multiple signs that my little boy, Koah, may be significantly autistic: sensory issues, not wanting to be held, continually making noises, food aversion, repetitive actions. The list grew, but suddenly my voice wasn't heard. Like all the parents I had fought for, I was called the anxious Mum, the overthinker, over-worrier. Family, friends and professionals alike told me to calm down, but as time went on, they too grew concerned. I begged for help from the NHS: allergy testing, dieticians, paediatricians, speech and language therapists, food aversion clinics. Labels started accumulating: PICA, ARFID, sensory processing disorder, food intolerances, eczema, Autism. With each label, there was no real additional help, or minimal help with years worth of waiting times. Amongst it all, I just tried never to lose hope.
As Koah now approaches 3, he has 1 year left until he is expected to start school as one of the youngest in his year. Currently, he wouldn't cope. He barely looks at, or talks to people he doesn't live with. He struggles with huge speech delay and the words he can say are only approximations, difficult for anyone to understand without practice. He has approximately only 15 "safe foods", many of which are still baby puree foods. He struggles with sensory processing disorder where even looking at things like pasta or playdough can make him heave or cry. He finds emotional regulation a huge challenge and unexpected changes can leave him needing help to not injure himself as he finds his way back to a happy and safe mindset.
"He has noone better placed to help him than you" is a phrase I hear all the time. I try. My god, do I try. I made picture exchange cards to help with communication, I learnt to cut hair so he never has to face the barbers, we try to desensitise the scary, the noisy the overwhelming. I gave up nearly all work to be with him, because he wouldn't cope in a nursery without trained support. I became my son's therapist for free, as well as his Mum. BUT, because I am his Mum, I am not allowed to support him in a nursery setting or a mainstream school setting like I have for so many other children (funded by the local authority.) Without working myself, neither can I afford to fight the local authority to get him a trained professional to work with him in a mainstream setting. It feels an impossible situation and so, so unfair.
My little Koah bear has already made huge progress with us and has so many skills waiting to come out. We have come so so far already. He loves to dance, he can imitate dance routines he watches on telly. He adores animals and longs to speak in a way that Pippa, the dog, understands him when he tries to tell her to "sit" and "turn around" for treats. He longs to be able to make friends and have them understand all the great ideas he has in his mind. He wants to be able to tell us early when he is getting upset so he doesn't lock into meltdowns and cry so much he needs to sleep it off.
All these emerging skills (WITH trained support), would enable Koah to attend mainstream school and learn from his peers, make friends, gain academic skills and help him map out his future. I have spent my life seeing this structure work. However, these skills in a special needs school would mean he would likely learn negative behaviours rapidly, via imitation. Sadly, the expectation for child like Koah in SEN settings, suddenly drops from any future qualifications down to self-help skills and minimal, basic social communication. It's a hugely flawed, dramatically two-tiered system and suddenly, I am powerless to intervene because unlike all the times before, I'm his Mum. It breaks my heart.
This is why I am here, desperately asking for help to find a way to support Koah. I have been offered the chance to get him a private specialist consultant in our Borough, that can work on all his skills and then continue to support him into mainstream education. This consultant has taken on the local authority here 11 times and WON 11 times...BUT the price for private therapy, plus all the legal costs, educational psychology reports, speech and language reports etc. in order to WIN and give Koah the best possible chance in life, is astronomical.
It used to be me, telling families to "keep fighting, you will get there, it will all be worth it in the end" and now I need you all to tell me the same, to believe in Koah the way I've believed in so many others. To lift him up as he reaches for the stars.
My first goal is to start private therapy and then apply legally to the local authority to have Koah's school entry year delayed one full academic year. Then use that year to give him as much private therapy as we can afford, collecting data on his progress, to then prove to the local authority and anyone who doubts him, that he CAN learn and he WILL succeed if they match the same support in a mainstream setting.
I know times are hard right now, but literally every penny will count and a small amount multiple times to help sponsor my little star, would be just as valued as a bigger amount. I will appreciate everything along the way, including just wishes for success, health and happiness, so please reach out and help where you can, in anyway you can.
I don't know how we will get there, but I do know if we reach for the stars, sometimes miracles can happen, so I'm here, holding my boy up for as long and as high as I can, to give him the best chance of reaching the stars. One day, I guarantee you, Koah will be able to say "thank you," himself to everyone who helps hold him there too. Mark my words.
Love to you all,
Sammy and Koah xx
Organizer
Samantha Booker
Organizer
England