Earlier this year, Adam was fitted with a lycra suit to help improve his posture. The suit, which appears similar to a child’s wetsuit, is worn under his clothing during the day. Whilst wearing the suit, Adam sits much straighter and his spinal curve (see "Scoliosis" on our Medical Information page) is less pronounced. William and Daddy think that the suit resembles the outfit worn by Syndrome, the villain from the Disney/Pixar movie ‘The Incredibles’ although Mummy frowns on this observation and would remove this comment from the website, if she only knew how…
Money from Adam’s Fund has recently been used to finance two major purchases of equipment. Firstly, we have been able to have a platform lift fitted to our vehicle to allow us to load and unload Adam’s wheelchairs and other equipment simply and easily.
Previously we had to manoeuvre Adam’s chairs manually up and down two portable aluminium ramps, which could be a tricky and sometimes painful business. The ramp, a Fiorella F300 fitted to the vehicle by the Cornwall Mobility Centre, can easily lift even the heaviest of Adam’s equipment (the Snapdragon wheelchair), making it far easier for us to get out and about.
We would like to thank the staff at the Cornwall Mobility Centre for helping us choose the Fiorella and also for their prompt and attentive service when fitting it into our vehicle.
We have also taken delivery of a Tomcat Tiger Trike for Adam. Purchased through Ashfield Special Needs Ltd, Adam's trike, like all Tomcat trikes, has been custom-made by Tomcat SNI Ltd and allows him to steer, while a carer using the special control arm at the rear can work the brakes and correct the steering if (or usually when) necessary.
Adam adores riding his bike. Although he cannot actually pedal, his feet are held firmly in place on the pedals and when the trike is pushed the wheels turn, causing the pedals to rotate. This gives the illusion of him pedalling and provides excellent exercise for his legs.
In September 2010, Adam started school. Currently he attends part time, but from January 2011 he may be going five days a week. We chose to send him to a mainstream school, as we felt this would give him the best opportunities for development, both physically and mentally. For many months beforehand, we were involved in long and frequently difficult negotiations with the Local Authority, Cornwall Council, regarding Adam's Statement of Special Educational Needs. Further problems with the Council arose when it transpired that the special equipment Adam requires, including a supportive toilet seat, had not been ordered in time and so had not been delivered when he started school.
Despite these problems, Adam appears to have settled well. He has made several friends and is fortunate to have two fantastic Teaching Assistants assigned to him, who have quickly mastered how to use Adam's equipment and who are actively encouraging him to be independent. Whether the funding will be provided to retain them both when he starts full time is not clear at this stage, although we are pressing hard to make this happen.
Several children at the school have outshone many adults with their caring and forward-thinking attitude to the needs and worth of disabled people.
Update - 25th February 2011: We have now received written confirmation that both Teaching Assistants will be funded full-time. We are delighted with this outcome and look forward to working closely with the TAs to ensure Adam's continuing development).
Update - 15th November 2012: Adam is currently being home schooled. See 2012 News for details.