William (aka 'little peanut')

December 24, 2011

William (aka 'little peanut')

And so we come to the last of my posts on my brilliant kidlets and i've saved possibly the most brilliant till last - this post is about William.

For those who don't know i'll give a brief explanation of William's disability (you might want to skip this paragraph if you already know): William was diagnosed with a condition called Tuberous Sclerosis before he was born - he has over 50 tubers in his brain, which basically means he has brain damage to every area except for the brain stem. He also has 2 subependynal nodules in his brain which have to be monitored because they could grow and cause fluid on the brain in future and he has smaller tubers in his heart but these are shrinking and haven't caused him any problems. William's brain damage means he has developmental delays (he is currently functioning at the level of a 3 month old at the age of 16 months) and epilepsy resulting in several seizures a day, despite being on a cocktail of medication. William also has a cortical visual impairment, meaning his brain can't process the messages from his eyes properly, sensory processing difficulties making him hyper-sensitive to some sounds, tastes and textures and he is also displaying some characteristics of autism which is strongly correlated with his condition. William is enrolled in an early intervention clinic and receives speech therapy, physiotherapy, hydrotherapy, a group music and movement session and advice and input from an occupational therapist and a visual impairment specialist. i also carry out daily therapy with William in the sensory room we built in our loft.

William has made amazing progress despite all his difficulties and he is now able to:
- look at, focus on and track objects, toys and pictures in normal lighting
- show recognition of familiar people and favourite toys
- show preferences for some colours over others
- operate large switch pads independently to activate favourite sensory equipment
- reach out for and take toys offered to him
- pick up toys from the floor to investigate
- tolerate and enjoy some textures
- splash with his hands in water
- support his own head
- remain in a seated position with cushions to support him
- push up from the floor with his arms for increasing amounts of time
- make happy, cross and upset noises

William is a very determined little boy and he doesn't let his disabilities get in the way of something he wants to do. He will try and try and try until he succeeds and he can be very stubborn when he wants to be! William is generally very happy and affectionate, loves physical contact and snuggling with his family, is beginning to respond to his twin brother Finn more and more (he learnt a new skill from Finn the other day that none of his therapists have been able to get him to do!), has a gorgeous giggle and a beautiful smile and quickly captures people's hearts. Some of William's favourite things are: bathtime and water play, light-up toys, music and songs, bubbles, ducks, being outside in the sunshine, watching the wind blowing the leaves on the trees, being in the woods or on the beach, massage and being in the sensory room. For Christmas we have got William a variety of sensory toys - ones that light up, play music, makes noises or are for water play. We think he will enjoy using them very much!

Thanks for reading about my little peanut, William