My daughter Mia, who is two-years-old, has a rare genetic condition, which causes epilepsy and severe developmental delay. Her condition also affects her motor skills and muscle tone, so she’s unable to feed herself and it’s unlikely she’ll ever be able to walk.
Mia also has a visual processing condition which means although her eyes can see, her brain is unable to process the information. She can distinguish between light and dark, but she can’t see detail, so going into darkness can be distressing for her as she struggles to understand what’s happening.
Mia joins the Mini-Magpies group
We found out about Sense and the Mini-Magpies pre-school group at Manor Lodge, during one of Mia’s appointments. Due to Mia’s problems, my wife, Nicola, found attending ‘normal’ groups quite a distressing experience. When she first took Mia to Sense and met Family and Support Worker, Nicky Burgess, she remembers sitting in a circle and watching the other children using sign language during the songs, which made her very sad. But then she began to see the children enjoying themselves and how much they were getting out of the group session.
The joys of the sensory room and the hydrotherapy pool
When Nicola returned to work, I began taking Mia to Mini-Magpies. This was the first time I’d taken Mia to any kind of group by myself. Nicky couldn’t have been any more welcoming and I immediately felt at home with her, the staff and the other children. I imagined myself feeling uncomfortable and looking forward to the group ending, but I’m often one of the last people to leave each week. Mia enjoys herself, but I also find interacting with the other children and their parents a great experience each week.
Mia loves her time in the hydrotherapy pool. Being in the warm water relaxes her tense muscles and she often feels so comfortable that she falls asleep! She gets a great deal of joy out of being in the pool, so much so that we’re looking to get her some kind of hot tub at home.
Mia also often comes alive in the sensory room. Nicky introduced us to the resonance board, which Mia really responds to really well. Just having that time in the sensory room and pool each week is massive for her and I always feel she gets a great deal from it. Attending Mini Magpies each week is something we all look forward to and it’s a big part of Mia’s life now.
Nicky does her best to keep everyone happy and does an amazing job. Just after our son Charlie was born and we discovered he had problems, she allowed the four of us to come to Mini-Magpies and use the facilities as a family. It really helped us and we now consider her a friend and are lucky to have her in our lives.
Communication with Mia is very difficult. She has little understanding of the world, so we’ve had to get to know her and understand her ways (as any parent would). She has different cries that we’ve learnt to read, while she responds to a soothing touch when she’s upset, or differing tones of voice. We expect her to be non-verbal, so it’ll be a case of developing that moving forward.
Sadly, we’ve not really managed any big breakthroughs with Mia. She’s not really hit any major milestones in terms of communication.
Christmas hopes for Mia
Mia’s first Christmas was a tough one for the entire family. She was diagnosed with infantile spasms two days beforehand and we had to begin aggressive treatment with steroids, which rendered her very sleepy for much of the day. She was bought lots of mainstream toys that ultimately proved to be unsuitable for her, due to her complex needs. But going to Mini-Magpies has allowed us to discover the kind of toy that she responds to and has meant that we, and the family, can now get her more appropriate presents moving forward.
This year, our biggest hope is that we can sell our house and buy a new one – with Mia’s needs very much in mind. We want her to have a dedicated sensory room, filled with the kind of toys and gear she enjoys at Manor Lodge, plus a downstairs bedroom and wet room. There would be no better present for her than that, as our current house isn’t really future proof given her needs.
Speaking to other parents and sharing information is one of the best things about Mini-Magpies. Be it getting advice or passing it on yourself, it’s such a great environment for parents that have children with additional needs. It can be a very lonely experience, but the group is incredibly welcoming and it’s amazing to see how quickly new parents feel at home there. Mia is always happy at Mini-Magpies, but it’s also helped us become more accepting of our situation and the future we face as a family. Sense has played a part is helping us move out of the darkness and enjoy Mia for who she is now.