In November Mumsnet started an awareness campaign for mums whose children have special needs, titled #Thisismychild . Its a good way to get parents together, to discuss their difficulties they have or to just interact with other parents who are going through similar circumstances. Hosting Novembers issue was Hayley Goleniowska from Downs Side Up.
Hayley set up her blog to talk openly and to offer positive advice for parents whose children have been diagnosed with Downs Syndrome, as her own daughter has been diagnosed with this. Raising awareness is not an easy thing to do and does take up a lot of time and is even harder when you have a family. Hayley has done a fabulous job of bringing the stigma away from Downs Syndrome, winning many Blogging Awards and to also have been named Mencap Mumbassador
A huge thank you to the lovely Hayley for featuring my families story on #thisismychild , in the hope that FACS awareness will continue to spread. To read other mummy bloggers and their stories , click on the link below :
Yesterday Joe and I had a meeting at the childrens school with regards to Lauren and Lukes Statementing needs. When a child has special needs at a mainstream school they can apply for a one to one teacher to help and support them in which ever area is needed. As both of them have FACS and Cerebral Palsy there statement is based around their physical difficulties ,with Luke more so as he has other reasons for statementing ie behaviour – Aspergers Syndrome. The school are fabulous and so supportive, they meet all targets that are set for Luke and Lauren. As a parent of children with disabilities it is a worry sending your child to a mainstream school but with the help of a SENCO worker it makes it a bit more bearable. Lauren is now 7 so she is at an age where she is noticing she is different. We were told yesterday that she has been saying to her support worker “Im disabled”. Other children around her are faster and quicker mobility wise and she is becoming frustrated that she cant get somewhere quicker. It is part of finding herself to, so at the minute there are lots of questions, tears and very deep conversations. We are very honest with her and explained why she has these conditions and try and make it as positive as we can. The relationship they also have with their support worker is very special. They both get on great with their nominated teachers. Im not jealous that they have this close relationship, its like having an older best friend because they do tell me what they speak about – its nice and reasurring.
The key with our children the school, and outside agencies with all my babies care is to work as a team. Any questions, worries or concerns dont keep them to yourself but go and speak to whichever person nominated. You will most of the time get a truthful and honest answer. Dont keep things bottled in – it doesnt help you. The teachers told us yesterday they prefer hearing parents concerns as they can work on it better. So a very positive meeting.