Max’s story

Watch Max’s day in the life video

Max’s journey, shared by Mum, Kirsten

Max was a fun-loving two-year-old toddler who enjoyed causing mischief.  He was full of energy and had a cheekiness that made everyone smile. Then our world slowly unravelled.  Rather than developing, Max started to regress.  He lost his ability to talk and play.  He stopped making eye contact.  The only way I could reach him was by singing.  Then he would smile and connect with me again.  We had songs for everything: going up the stairs, having a bath, getting ready for bed.  The list was endless.

At two and a half years old, Max was diagnosed with severe autism.  At age 14 years, he developed epilepsy and then later that year he was diagnosed with Phelan-McDermid syndrome, a rare genetic disorder that affects how a person’s brain develops and how their body functions.

Things did not get easier.  Max’s care needs were high. Whilst he attended a local school and had therapies, we were struggling at home to support him. His epilepsy was challenging.  At one point, he had 250 seizures in 24 hours.

By the time he was 18, Max needed two carers 24 hours a day. He had to be held onto when he was on the move to prevent injury.  His sister, who has additional needs, needed our support too.  We were exhausted. He needed a 52-week residential college place which could support his complex needs and enable him to develop.  There are many more young people like Max who need specialist support but the supply of such places hasn’t met the demand.  We were having a hard time finding somewhere that could meet his needs.

I visited National Star, by chance, with one of the mums in my support group.  I didn’t know much about National Star but the more I saw the more I thought it would be perfect for Max.  The charity offered 52 weeks, fantastic facilities and therapies, and 24-hour nursing care which is so important for Max.  It took us more than two years to secure him a place there, but it was worth the fight.

Max’s journey with National Star

Max is a happy and inspiring student. With the biggest smile, he is a pleasure to teach and brings joy to every session he attends. On the Engaging with the World pathway, Max is working to build his communication skills so that he can tell people what he needs and likes. 

Max had a rocky start at National Star. He found it difficult to settle into sessions and needed significant support from his multi-disciplinary team (MDT). Over time, staff have worked with Max to create a safe and comfortable environment that meets his needs. He now has a secure space in the classroom where he can move freely without constant physical support. In addition, collaboration with the physiotherapy team led to funding being secured for his very own Grillo walker, enabling Max to walk independently. This has been a life-changing step for him, creating greater independence.  

‘Max is really happy there.  He has an amazing care team.  They really love him and care for him so well – ensuring his emotional and physical needs are met. He feels understood and safe. He has all the therapies he needs and more.’ Max’s Mum, Kirsten.

Building communication and engagement

One of Max’s key targets is to increase the amount of time he spends on new activities, especially those chosen by other people. Initially his goal was to participate for 30 seconds. Max has already surpassed this milestone and is now working towards extending his engagement for longer, more meaningful periods. This progress reflects his growing ability to interact with others and explore new experiences. 

A day in Max’s life

Max’s day is carefully structured to support his communication, physical, and sensory development: 

• Sensory sessions are designed to encourage exploration and engagement. It helps him to master communication in fun and stimulating ways.
• Max then takes part in tailored speech and language therapy sessions, which are often combined with occupational therapy in the sensory rooms. These sessions work to support his movement, independence, and communication.
• The day ends with rhythmic and sensory-based learning. Tac Pac uses music and movement to help Max connect with rhythms, build coordination, and integrate more confidently into his environment.

Looking ahead

Max’s timetable has been created to support his learning outcomes.  These learning outcomes are broken down into manageable steps for each year of his college experience: 

• Engage with the community and build meaningful interactions with people around him. 
• Participate in a variety of activities that support his sensory needs.
• Communicate his wants and needs across a range of different settings. 
• Understand and express his emotions, while learning to respond to calming strategies offered by others. 

A journey of smiles and strength

Max has already shown tremendous resilience and progress in his first year at National Star. From overcoming the challenges of his early days to walking independently with his Grillo walker, he continues to grow in confidence and independence. With his radiant smile and determination, Max’s future is filled with opportunities to engage, connect, and thrive.