Friday 23rd Sept
I have recently become friends with a lady called Sue. We met at a local support group for parents of disabled children. We have many similar experiences with our children and how they are treated both at school and in the community. It’s been really lovely to get to know someone with a child with additional needs, and although she doesn’t have any of the fostering issues we have – she does have an idea of all the other issues that go along with having a child with additional needs. Sue’s son has a genetic disorder called Jacobsen Syndrome. I have to admit I had never heard of this before I met Sue. When we first met I don’t know why but I didn’t actually stop to ask her what Jacobsen Syndrome was, she just assumed I knew, the longer the conversation went on, the more embarrassed I was about asking. So when I got home I had to quickly look it up!
I found out that Jacobsen syndrome is a genetic condition. Most people who have it have delayed development, including speech and motor skills (such as sitting, standing, and walking), cognitive impairment and learning difficulties. Many also have behavioural problems including compulsive behaviour, short attention span, etc. Many are also diagnosed with attention deficit-hyperactivity disorder (ADHD) or autism spectrum disorder (ASD). Jacobsen syndrome is also characterised by several distinctive facial features, which include small and low-set ears, widely set eyes with droopy eyelids, a broad nasal bridge, downturned corners of the mouth, a thin upper lip, and a small lower jaw.
Sue says that Jacobsen’s is not that common and most people just assume her son has Downs Syndrome. We have talked a lot about misconceptions. We get that with Alice too. People assume all sorts of things. Sometimes I correct them and sometimes I don’t. Its amazing that even in this support group people often think they are experts too on our children’s conditions. That can be quite irritating. You are just in the middle of explaining something and they have already jumped to the wrong conclusion and finish your sentence for you. The most annoying thing is when other parents become competitive – like their child is more special, more challenging, more complex, more disabled. A group which is essentially a support group, can at times be quite exhausting!!
I guess it is easy for all of us to switch off our ability to listen, and assume things of other people, without giving them the opportunity to really express how they feel. We all deserve to be heard, and for our stories to be treated as unique. I come away from this group determined not to allow the challenges we face with Alice, and in our family life in general, to overwhelm me so much I cannot be there for others!
A Less Ordinary Family Blog