Parenting a child with a disability or additional needs
Article kindly written with Contact A Family (CAF) for parents of disabled children
Parenting a child with a disability or additional needs can often be a rollercoaster of emotions and experiences. It can be really hard to talk to others about how you feel or what you are doing as you may feel they might not be able to understand it fully. The tips below are from parents to parents.
There is a difference
Don't listen to parents of other children who say, ‘Oh, all children are fussy/obsessional/stubborn/lose things etc.’ It will drive you mad. Yes, all children do display these same characteristics but it's about the degree to which they do it that makes the difference and is so hard to explain.
It's OK to ask for help...
Don’t be concerned about asking for help – to my surprise I have found that friends and family don’t offer to help but are very happy to help if asked.
Choose your battles
I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!
Put yourself in their shoes
Remember that routines are important in everyone's life and missing a step can make you feel ‘not quite right’. Think about how you feel if you sleep in and don't get to eat breakfast or have a shower. This can be useful when trying to understand why someone with learning disabilities is struggling when they can't complete a routine.
Look after yourself
Try to make a little quality time for yourself each day even if this means leaving the person you care for in front on their favourite DVD or TV programme for half an hour. It won't do them any harm. As a family carer, you need to be the no one priority, so make sure you eat and sleep properly, and go for regular health checks.
Get all the help you can
I would suggest parents try every bit of help on offer – Portage (a home visiting educational service for pre-school children and their families who need extra support), Child Development Centres, Sure Start Centres, local libraries, health visitor, support groups, etc. It's much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (e.g. portage) can take ages and is worth getting sorted out as early as possible.
Register with your GP
Register as a carer with your GP. PCTs and local councils often run support schemes that are accessed through GPs but are otherwise not obvious or easy to find.
My parents are from the 'She must Eat What She Is Given' school so I feed Paula earlier than everyone else so there is less opportunity for upsets all round. Sometimes a picnic can also be a good tactic as everyone eats with their fingers and it's easier to relax a little.
Make sure you get a carers assessment and get all the benefits/support you are entitled to. You can speak to an advisor to find out if you are eligible. Speak to Contact a Family (the charity for families with disabled children) to get some impartial advice.
I try to keep up an exercise programme – mainly weights, because my son is large, and I worry that one day I won't be able to manage him. Being fit has given me confidence in how I manage my son, which in turn has improved his behaviour. Exercise is great for your overall mood as well.
Friends and hobbies
Friends and hobbies are enormously important when you are a family carer – especially when they take you out of your role as a carer for a short while. I try and mix with people who aren't carers too, so I get to focus on something else for a bit.
We know that children are more likely to be bullied when they are vulnerable in some way. Research suggests that disabled children are three times more likely than their peers to be bullied. A survey by Mencap discovered that eight out of ten children with a learning disability have been bullied. People’s assumptions and prejudices about disability can make disabled children more vulnerable to bullying for a number of reasons, such as:
- negative attitudes towards disability
- a lack of understanding of different disabilities and conditions
- being seen as “different”
- not recognising that they are being bullied
- they may be doing different work or have additional support at school
- they may be more isolated due to their disability
- they may have difficulties in telling people about bullying
- they may find it harder to make friends
As a result of their condition, they may exhibit bullying behaviour; or they may experience lots of transitions which means they have to settle into new environments. Examples of transitions are moving from a special unit to a mainstream school, spending periods of time in hospital and returning to school. In addition to usual forms of bullying, disabled children may also experience different forms of bullying, such as:
Manipulative bullying: where a person is controlling someone. “It wasn’t long before people realised that they could take advantage of her.”
Conditional friendship: where a child thinks someone is being their friend, but phases of friendliness are alternated with phases of bullying. He wanted to please them, wanted to be friends so he didn’t see it as a problem.”
Exploitative bullying: where features of a child’s condition are used to bully them. “He’s hypersensitive to smell. They’d spray deodorant in the room, so he had to leave the room.”
It is understandable to feel anxious about bullying; however, it is important to remember that not all disabled children are bullied. Don’t assume your child is going to be bullied but be prepared in case they are.
Childcare for disabled children
Quality childcare is important for all families – and disabled children or those with special educational needs can benefit from being around their peers and people outside of their family network, as they often don’t have as many opportunities to interact with other children and can start to feel isolated. Also, sometimes families just need a break from their caring duties to spend time with the rest of their family. You can speak to your local authority to find out if there are playschemes, registered childminders or nurseries that specialise in working with children with disabilities.
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Bounty is proud to bring you this information in partnership with www.familylives.org.uk. Family Lives is a charity with over three decades’ experience helping parents to deal with the changes that are a constant part of family life.
Comments on this article are monitored but NOT answered. However, Family Lives has extensive advice on their website, live chat services, and information about befriending services and parenting/relationship support groups. There is also a helpline and an online community forum offering a safe space for families to share dilemmas, experiences and issues with others who understand the ups and downs of family life. https://www.familylives.org.uk/how-we-can-help/forum-community/