Maria Barnes brought her second and third children into the family when she gave birth to Tom and his twin sister, Iris.
But Tom had a particularly hard first year – he was very stiff and uncomfortable. Doctors told the family it was colic.
“I think we had taken him back to the hospital about six or seven times to see the specialists and they never picked anything up and the just kept saying: It’s colic, he’ll outgrow it.”
Maria trusted the specialists, as is normally the right thing to do, but it became really difficult for her to do nothing, especially seeing Tom in so much discomfort for so long, so she started her own research. And instantly regretted it.
“One day I just Googled infant with stiff limbs and got pages of stuff about cerebral palsy. I completely panicked and thought: You stupid woman, why did you look at that, never look at medical stuff on the internet.“
“I went back to the neonatal doctors and said: Can you just tell me that it isn’t this (cerebral palsy) because I’ve really scared myself. The guy went white, and I just knew. My husband says I fell to the floor.”
“That was the day that changed everything. But changed everything for the better, to be honest, because then we knew what we were dealing with and knew how to help him.”
Tom was diagnosed formally at just over one year old as having quadriplegic spastic cerebral palsy. “We don’t know how or why,” says Maria, “but it is what it is, and life’s been so busy we haven’t really dwelt too much on it.”
Maria gets excited talking about Tom. She beams with pride talking about his abilities, his intelligence and his funny little observations.
“He’s an awesome boy, he’s really amazing. He has fantastic speech, which developed sooner than his twin sister’s did, which was kind of bizarre. He’s got an amazing imagination, he loves to explore, he loves to know what everything’s made of and how it works.”
“So he’s a very motivated little boy but up until now his world has been very small because of the limits of his mobility. He can’t sit unaided, he can’t stand unaided, he can’t walk unaided. He can just about roll over. But in his mind he can do anything. He doesn’t tell us that he’s aware of his limitations at all.”
Tom’s Upsee only arrived two weeks ago, but Maria couldn’t wait to tell us about his progress. She sent a great photo through to our Facebook page and we just had to contact her for a chat.
“The Upsee has just been amazing.” She said. “This weekend he spent 20 minutes taking me around the kitchen just looking in all the cupboards, at the pots and pans and looking in the drawers and just exploring.”
Now he had his Upsee, the little adventurer was finally free.
“I was absolutely amazed that the first time we put him into the Upsee I felt him go. It was like all of a sudden I’d given him this mechanism for the freedom he had wanted for so long.”
“Yesterday we went to the hardware shop around the corner and he spent 15 minutes looking at all the tape and the glue and asking me what everything was for and I gave him my debit card so we could pay for the wood so he waved the card at the person in the shop and announced “I’ve come to pay for my wood!”
"Then we came home and invented a new game called ‘kick the watering can’. We gave this big metal watering can a boot and it made a huge clang , he was laughing his head off, so we played it for ages."
"One of the nicest things was going to a family fun day and it was the longest walk yet – he spent 40 minutes in the Upsee and he went all the way along our road, across the recreation ground at the end to this big field where they were having this fun day. And there was this live band playing. He took me straight over and was he like: “look at the drummer, look at the drummer.”
“And then I felt him dancing. He was dancing for the first time in the Upsee!”
“We walked home later and he said: “I want to hold daddy’s hand”. So my husband walked all the way home with him just holding hands with his son. We’ve never been able to do that before.”
“I’ve noticed that he’s becoming more aware that he needs to stand up tall, to hold his head up to look where he’s going. The first few times we went in the Upsee he was staring at the floor – he was interested in seeing his own feet, I think – but now he’s looking where he’s going and he’s taking everything in.”
“It has been totally life-changing for us. We’re having so much fun, I can’t wait to get him home from school so we can go on another little adventure.”
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