Having a child with special needs often means you are forced to become involved in a world those parents who have children with no additional needs don’t have to. This new world involves coming into contact with professionals and services you may never have heard of before. This new world can be confusing and its often-hard work to manage the growing list of professionals involved.
Working with professional can be fantastic, there are many professionals from teachers, SENCOS, consultants, nurses, social workers, Occupational Therapists, who work really hard to make sure you are listened to, that you are part of the decisions made about your child, that you set the direction of travel, that you are supported to articulate what your child may want in the future. But there are also professionals who don’t get it, who have meetings without you, tell you what decisions have been made about your child and their support who talk over you, who make you feel uncomfortable, who you generally try and steer clear of. It’s these professionals, especially when there are a few of them together that often make it feel like you are hitting a brick wall, make you nervous about going into meetings and in the long term means that the views, wishes and feelings of your child and your family are not heard. I am by no means saying that these professionals are not trying their best, perhaps in their view they are, but the Section 19 principles in the 2014 Children and Families Act place the child and their family at the centre of all decisions about their care.
Sometimes I know as a parent that you often feel overwhelmed when in meetings, when working with professionals, when managing lots of paperwork and sometimes it feels too difficult to get your voice heard. Professionals are experts and have trained in their particular field of expertise but you have known your child all their lives, you are the expert in them.
The ideal situation is that you are heard, that you are able to advocate for your child, no matter what age, that you are able to raise concerns without fear of being, ‘shot down in flames’ that you are able to work with all the professionals supporting your child in a holistic way, with all listening to what your child wants to achieve. It’s only by everyone working together that good outcomes will be achieved.