1. They are a child. Being a child should come before their disability. Many fail to look beyond the wheelchair, NG tube and various other equipment. They fail to acknowledge that underneath all of that lies a child, a child that finds silly things funny, enjoys stimulation and has a cheeky personality.
2. We are not strong or brave. Comments like ‘I couldn’t do it’ or ‘I don’t know how you do it’, whilst they come from the best place, are unhelpful. Sometimes we feel like we can’t do it and we certainly don’t feel strong or brave. We love our children and whether they have additional needs, or not, as parents we will do everything in our power to ensure their needs are met. We are simply doing our job of being parents it’s just our children’s needs can be different to children that aren’t disabled. Acknowledging how hard things are for us and our children is ok, it shows compassion.
3. There is absolutely nothing ‘wrong’ with our children. Our child is perfect. Please do not ask ‘What’s wrong?’ or ‘What happened?’ when we have just met you at the bus stop. It brings us back to point 1. Maybe ask their name and their age instead and you could even try asking the child, it wouldn’t hurt.
4. We don’t wish our child was different, ever. We love them just the way they are. Sure, there are times when we wish things were a little easier for them and even us but would we change them? No, but we would change the world for them!
5. Don’t stare. We get that it’s human nature to look at things that are new or unusual to us but these children are human beings. We can see you staring and it isn’t nice. Maybe smile, say hello or comment on how you love the colour of their jumper. Just don’t stare.
6. You absolutely can offer to help. We won’t be offended, we will politely decline if we don’t need it. If you see us struggling to get down some steps, get through a doorway or even struggling to deal with behavioural issues in public, your support may be appreciated.
7. Unsolicited advice when we haven’t asked for it and you have no experience is unwanted. We understand you are trying to help but we often have an entire team involved in ensuring our child’s need are met and we spend lots of time researching and trying to improve ways we do things. For example, Our child doesn’t sleep through the night due to their disability/condition therefore we cannot leave them to ‘cry it out’ when they wake.
8. Don’t just ignore us. It’s not very nice to be ignored. We understand you might not know what to say to us, and that’s ok but we can assure you that pretending we aren’t there isn’t the way forward.
9. Teach your children about disabilities. Hidden & visible. Teach them that everyone is different, some people eat with a knife and fork, some through an NG (feeding tube passed through their nostril into their tummy) or a PEG (feeding tube surgically placed through their tummy). Some people walk and some use wheelchairs. It shouldn’t be a taboo subject.
10. We aren’t just parents of a disabled child, we are our own people. We still enjoy social events if we can make it, we still have a sense of humour, our own interests and aspirations. We may have children that aren’t disabled also. We are just like you, just on a slightly different path although you could argue that we all are.
It is important to note that there is no one size fits all when it comes to being a parent of any child, but this especially applies to being a parent of a disabled child. Everyone deals with things in their own way so by no means are these 10 points gospels. Ultimately, we feel and wish that as parents of a disabled child and our child, should be treated like any other member of the communities we live in.