Progressing slowly but surely…
Our family includes my wonderful and challenging teenagers Billy and Kodie, my husband Mark and our son Buster.
Buster was born in 2005 at the Royal Women’s Hospital. He was not due for another 12 weeks but was born prematurely weighing just 1.354 kg and with a meningitis infection.
After antibiotic treatment and 9 weeks in hospital, we were immensely relieved to take Buster home. The long drive from home to hospital each day had been very stressful on top of being separated from our new baby.
Brain scans revealed cysts on Buster’s brain from the meningitis which resulted in scarring and hence a very high chance of cerebral palsy. This is now diagnosed as Cerebral Palsy, Spastic Quadriplegia – affecting the control and movement of both arms and both legs and other areas of his body.
We lived in a rural area and with one car (used by Mark to get to work). I felt very isolated and was not coping very well at all. Buster was a very shut down baby for the first 18 months, only interested in eating and sleeping, and life had many challenges.
Buster was 2 years old when we started Kids Plus. His legs were very stiff and crossed or scissored when he tried to move them. He had very limited use of his arms, still could not hold up his head, was not sitting and he had a very limited range of sounds. Cognitively though, he had become very interactive and aware, was learning about his body and interacting well with our family. He really enjoyed being “up” on his feet when Mark or I held him up.
Kids Plus has been the body and soul of our therapy and support, complementing the services that the therapy team at SCOPE has been able to provide us. Kids Plus therapy has been focused on the daily functional things that are important for Buster. I have felt engaged and consulted, and the goals relevant, achievable and meaningful.
These have included sitting while supported while being able to use his hands to play. We have focused on keeping his hands open rather than clenched and on his fine motor skills and use of his pincer grip. Sitting on the floor has been a variant on this goal, allowing him to play with a different range of toys. Buster has been learning to use a spoon to feed himself, he is a good eater. More recently Buster has been working on moving from sitting position to a standing position and self balancing. He has progressed from a Pony walker to a Kidwalker.
We have trialled an electric wheelchair through SCOPE and Buster was very excited to be able to turn it on and try to move himself around it in. He has had Botox three times to control spasticity of his legs which causes the scissoring. Each time it lasts for about 3 months giving a window to work on building muscle tone elsewhere and using strengthening exercises and stretching muscles, to keep his legs supple and his long bones straight as he grows.
Our long term goals are around communication and communication options. We would prefer Buster to be able to verbally communicate, but he may need some other systems like a computer device. Although Buster may not walk on his own yet, having muscle tone and some control in his body through using standing frames and walkers is important for some mobility and choices, long term spinal integrity to avoid scoliosis and to keep as many options open for Buster as possible.
Self care and eating are also important. Without input from Kids Plus he would not have learnt these skills, the small ones and the big ones. Each week we come away with progress. All the small ones add up into big ones.
There is no other place we can get this service. Words cannot express what it would have meant not to have attended Kids Plus. Weekly home practice, getting in and out of equipment – walkers, standing frames, a special bike, a shuttle seating system which gives Buster different angles of sitting from reclined to upright. Our next adventure will be a toilet chair as Buster wants to use the toilet.
What has this all meant for the family? Life is much easier now for his older siblings to interact and play. The Kids Plus team all have great ears to offload the ups and downs and are very supportive. They have no problems with us checking details, reviewing progress and answering all my questions.
To other parents, we recommend to keep talking. The key to surviving and moving forward is to keep communicating. Ask questions. Share.
Buster is progressing slowly but surely. Something we didn’t think he would do until we started with Kids Plus.