Jessica was a normal baby until six months old when she was diagnosed with Infantile Spasms (IS). She started steroids and has been seizure-free (touch-wood) for two months and 23 days. IS is also known as Catastrophic Childhood Epilepsy and causes developmental delays. One study puts the mortality rate at 1 in 3, generally due to underlying conditions. Of the survivors, 40% recover close to normal. At seven months, Jess’s only connection to the world were her fingers. She loved cuddles (thanks big cousin Jess for cuddling little Jess on your days off school) but she also had ‘roid-rage’. From this, Jess has re-emerged. She may never walk but gets around with a stretch/roll although her left side is weak. She burbles
“Therapy is vital and we have now done several weeks at Conductive Education (CE). CE is one of two options available for Jess’s therapy. CE is the only option where we can have daily therapy if we want to. First success was taking weight on her left foot. CE suggested shoes might let Jess feel what her left leg could do. I held her in a standing position and she took weight through both feet. Now I say ‘Stand-up’, and she pulls herself up. Next goal, dancing. Jess couldn’t sit unsupported until they put braces on her legs. With her knee straight, she had no problems. Now she sits without braces. Soon Jess will also do hydro-therapy at CE. CE deals with an array of disabilities. The staff work so lovingly with the kids to give them the best life. Tiny improvements make a difference. For Jess I think CE is right and I encourage parents to investigate. Although Jess attends twice a week and is able to do this continually, I have seen successes with other children who live further away and attend for blocks of time only a couple of times a year. CE has been very flexible with when Jess and other children can attend.
Having a special needs child has been a case of being thrust into a world where things are not what they were meant to be. But we have survived the awful early times and with help, especially from CE, we are making progress. If there are other parents or caregivers out there that I can help by sharing my experience I’d love to hear from them.