When faced with the prospect of having a daughter who would never able to crawl, Tara Thompson took things into her own hands, quite literally.
The popular blogger realised the importance of home therapy to help little Willow in her fight against the debilitating effects of cerebral palsy.
Willow was born prematurely in emergency circumstances and to say the disability diagnosis came as a shock to Tara and her husband Kirk, both 33, is an understatement.
Before becoming a mum to a perfectly healthy daughter, Ava, now 6, Tara had been studying a Bachelor of Primary Teaching and working as an early childhood educator. She also opened up a family day care to allow herself to continue studying after Ava was born.
Willow, now 4, arrived at 29 weeks when Tara was finalising her degree.
“I had a bleed and a few pains and within a couple of hours had an emergency Caesarean. My placenta ruptured and they just got her out in time,” details Tara.
“We knew my placenta was close to my cervix but the doctors weren’t worried, we had no idea I would go into premature labour or that Willow would have special needs.”
Willow spent the first 6 weeks of her life in the NICU, during which time a brain scan showed damage.
“A couple of months in it was evident that she was behind in all of the typical baby milestones and her right hand was constantly in a fisted position,” Tara says.
Willow was officially diagnosed with cerebral palsy at seven months old.
“Although we knew that this was more than likely coming, it was still a huge shock and the first few years were quite tough to fully accept and come to terms with,” admits Tara.
Willow had her first intense seizure at 3, and is now on daily medication. Six months later she was also diagnosed with autism.
Tara describes the initial therapy sessions for Willow as overwhelming and daunting.
“There was so much to work on, so many skills to practice and a heap of therapy to do at home,” recalls Tara.
“With another child I found it tricky to fit in and placed a lot of pressure on myself to get it done.”
Tara’s teaching background ensured she was well equipped to facilitate learning outcomes, so she implemented her own system.
“Play was now our aim and therapy was a bonus. Therapy wasn’t something just for Willow it was fun, creative and playful so Ava could join in too.
“I knew how crucial those first years were and even more so for children with additional needs. Early intervention is all about using time effectively and not allowing it to go by without fighting against
the damage to the brain in order to retrain neural connections.
“I know with 100% certainty that Willow has come such a long way because of the therapy we did and I am so grateful that I stuck to home therapy and making it my mission to give her the best possible start.”
Tara recalls the moment that crystallised her resolve to help at home.
“Her therapist said she thought the way Willow’s body was affected would probably make it too difficult for her to crawl and she stopped making it a focus at appointments,” Tara remembers.
“But this didn’t sit well with me and knew we could keep trying. There wasn’t any harm in still trying.
“Weekly and sometimes daily we practiced crawling and skills to assist crawling and at 22 months of age Willow crawled. She crawls with reciprocal movements and now has even begun knee walking.”
While Willow still participated in – or “tolerated” – occupational therapy and physiotherapy appointments, the home approach appeared to pay the most dividends.
“Willow thrived and I began sharing our journey publicly on our Instagram page so that others could use ideas for home therapy too,” says Tara, who also welcomed another healthy daughter into the household, little Indy, who is now 14 months old.
“Four years in and therapy at home is still very much a part of our lives and Indy joins in too. Willow really enjoys it and actually asks if we will do therapy.”
“While she will always do the more traditional therapies she also does swimming, gymnastics, yoga, and horse riding in special needs classes or one-on-one and they all have amazing therapeutic benefits – but to Willow they are just fun activities that all kids do.”
Up to three home therapy sessions are scheduled each week.
“I have therapy toys and cupboards ready to go and if I ever think of an idea I write it down.
“I recycle a lot of things. For example, I use recycled yoghurt pouch lids and blu-tack them on the wall in line at a height that Willow can lift her leg while holding on to the wall to knock them off.”
A popular two-handed therapy idea we use is where I put things inside a kitchen whisk and Willow has to try to hold onto the whisk handle with her affected hand so that her functional hand is free to pull the items out.”
Tara uses the analogy of training for a marathon that never ends to describe their journey.
Later this year Willow will undergo Selective Dorsal Rhizotomy surgery, an intensive neurosurgical technique that involves cutting the sensory nerve roots at the spinal cord level.
“While it isn’t a cure for cerebral palsy it will take some of the stiffness away and allow her to have more freedom and comfort to move,” Tara says.
“Therapy after this operation will be very intense for at least a year, more so than we have ever committed to before – daily therapy sessions at home again and daily appointments to get her strength back – but it will be worth it in the long run.”
So, with that challenge ahead for the family, Tara says it’s important not to get overwhelmed.
“As soon as it gets too overwhelming take a step back and give yourself a break,” she advises.
“Write a timetable, concentrate on just one of two things a week, slot in a couple of blocks or work on a just a little every day.
“There is no right way to approach therapy and the world of early intervention. But it doesn’t have to be a chore. Therapy can simply just be play .Get creative, make it fun and soon enough those overwhelming and daunting feelings won’t be as much of a burden and before you know it, it will become natural and easy.”