A grandmother’s perspective on disability

Megan Parks (14) from Wokingham is non-verbal but has benefitted hugely from music therapy and other multisensory techniques in helping her communicate.

Here her grandmother, Lynda Hewlett (67) explains that although she can’t have a conversation with her granddaughter, they communicate through music, laughter and multisensory experience.

“When Megan was born she was just beautiful, absolutely gorgeous, perfect,” remembers Lynda of the day in July 2001 when she waited for her daughter, Anna, to come out of the operating theatre after an emergency caesarean section. She explains that although Megan has never developed beyond her baby stage, she is still ‘Nanny’s good girl’. A month before Megan’s third birthday she was diagnosed with Rett syndrome, after failing to crawl, walk or talk. The rare genetic condition affects the brain communication development, causing profound and multiple learning and physical difficulties. Explaining her close relationship with Megan she says: “After splitting up with Megan’s dad, Anna was struggling to cope with holding down a full-time job and giving Megan the care she needed so it made sense for her to come and live with me and my partner, Charlie.” It was Charlie who first learned of Rett syndrome after searching the internet to find out why Megan didn’t seem to be reaching certain milestones at 18 months. “It was like ticking off a list of symptoms; from cold feet to lack of hand movement. She had every one that was listed. “There had been no concerns at all when she was born and she began to develop normally at first. She started to sit up a bit later than usual at nine months but the never tried to crawl and seemed to regress. She had trouble picking up her toys and her limbs were floppy.” The diagnosis of Rett syndrome was confirmed in 2004.
Megan enjoying rebound therapy which involves sessions on a trampoline
“It was a huge blow to us all,” says Lynda. “I remember sitting on a train when Anna phoned to tell me and I started crying. Even though we had suspected it, we were hoping beyond hope we were wrong.” “But at least we knew there was a reason for her not reaching her development milestones and we could now work towards getting her the best education and lifestyle.” The house was adapted for the youngster’s needs with a front door ramp and a new bathroom and hoist. However as Megan got older and grew, she developed severe curvature of the spine and so needed a back operation. She was heavier to lift and wasn’t as active as before. It was then decided that she should become a residential student at The Children’s Trust school in Surrey. Megan follows the school’s unique specialist curriculum and has her own individual 24 hour therapy programme. Lynda visits her regularly and takes part in sessions. “I didn’t want Megan to not be with us anymore but I knew that this was the right choice;  that she would thrive and learn techniques to help her reach achievements,” says Lynda. “Before coming to The Children’s Trust, Megan was with me 24/7 so in many ways it’s given her more independence and allowed her to grow, develop and socialise with others. That in itself is a positive milestone.” Her lessons are multisensory and she has become progressively more interactive and engaging with her surroundings and particularly enjoys interactive music lessons. Music therapy, whilst a rehabilitation technique and ongoing aid for children with brain injury, is also beneficial to children with profound and multiple learning difficulties, such as Megan. “She has learned that by hitting something or banging a drum she can let others know that she would like more of what she is listening to.” Lynda says she is also fond of rebound therapy where she experiences therapeutic use of a trampoline. It gives her movement opportunities, relaxes her muscles and provides sensory stimulation. She also loves the hydrotherapy sessions and is getting more and more confident in the water. “She doesn’t vocalise but she does communicate with us. We paint pictures and I bounce her on the trampoline. If she wants more bounce, she claps. We always know what she wants, especially if it’s chocolate. She’s a very smiley, happy little girl. If she grins you know what the answer is.”
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