Clark has a chromosome abnormality. He has been following a Brainwave Therapy Programme since 2016.
Told by Laura, Clark’s mum
Clark, our 6-year-old whirlwind, was five months old when he started to have epileptic seizures. His diagnosis revealed he was born with 1p36 Deletion Syndrome, a rare chromosome disorder where DNA is deleted and for Clark, abnormalities to the structure of the brain.
Clark has a severe learning disability & development delay, resulting in moderate to severe intellectual and physical disability. Some of Clark’s abilities at six are alike to a one-year-old baby.
Clark is vision impaired, hearing impaired and he has sensory processing disorder. He has epilepsy and a heart condition called Cardiomyopathy. He is nonverbal, so every cry is a guessing game. While termed non-mobile, Clark can crawl for miles for the right biscuit! Limited fine motor movements mean he struggles to manipulate objects…. but he will demolish that biscuit, with finesse!
The NHS are incredible, and Clark wouldn’t be here without them, but when we were advised of a 6-12 month wait to see a physio, we joined the 1p36 UK Facebook Group for advice. Many parents recommended Brainwave and from the first call, we knew we’d found something special.
Brainwave offers hope and purpose. When your child is diagnosed with additional needs, you feel overwhelmingly inadequate. How can we help him reach important milestones? How can we protect him from a world that expects normality? And how can we make sure he is happy, every. single. day? The answer is to find Brainwave.
Brainwave provides safe harbour for desperate parents who need help, to help their children. They transform parents into mini at home therapists who have been educated, advised, and empowered.
From the first assessment we felt at home and the therapists really listened. The therapy team identified that Clark needed help with mobility, communication, sensory integration, engagement, and independence. The Programme was tailored in small, achievable steps, including every area where Clark needed help to develop; a one stop shop.
Having small activities to work on included the family and gave us all a positive way to help him, and an outlet for that endless love that was sometimes difficult to share with a baby (who couldn’t physically tolerate cuddles or understand how much he was loved through smiles and affection). This has now changed, and Clark loves Mummy cuddles and kisses and rough and tumble with Daddy.
Clarks mobility has developed exponentially, and he is surpassing all expectations of limited movement. Clark can crawl and bottom shuffle between rooms, up and downstairs. With support, he can stand from kneeling independently, meaning that Clark has choices and is happier, especially when moving to the kitchen to give ‘I’m hungry’ hints!
Clark’s communication expands daily and we’re working towards speech and language with Claire this year. Currently, Clark can make choices between objects and photos which is extremely empowering and gives him a voice. He is more vocal every day and VERY expressive if you choose the wrong episode of Peppa Pig!
Makaton has been a game changer and the team have taught us ways to communicate which we’ve passed onto our family who love such meaningful interaction, resulting in a less frustrated little boy.
Clark has been on a journey in terms of sensory processing, things take his brain longer to process and he needs extra time to coordinate thoughts and actions. Mervin has devised a brilliant sensory programme which includes swinging, bouncing, rolling, playing with pasta, play doh and slime – 6-year-old boy heaven!
Clark has found all these things tricky, but with Brainwave’s ethos of repetition, repetition, repetition and encouragement, we are making huge progress which open up possibilities and experiences for him. We took Clark bowling recently, an almost unimaginable activity in the past. He coped well with the flashing lights, loud music, the crowds, and noise. He even got a strike!
Brainwave has changed my life. Our son’s life, our family’s life, and the way we see our once bleak, now bright future. They have helped us achieve what we feared impossible. Clark’s world has opened up and continues to grow, thanks to their commitment to helping children with disabilities reach their potential and become their very best selves.