How to … support a child with a physical disability
Hearing the words “I think we have a problem here” was life changing. I had always been the professional, the care-giver and now I was the patient, or mother of a patient; or in today’s language, the service user. Those words, spoken by the sonographer when I was 20 weeks pregnant, diagnosed our unborn baby with spina bifida and hydrocephalus. I knew a little about the condition because I was working as an Occupational Therapist at the time and had come into contact with people with spina bifida. But this was different. It now affected my husband and me in a personal way. I had an inbuilt mother’s desire to protect my child, and an added concern of defending the weak which is often part and parcel of having a disabled child. There are added burdens which the parents of a disabled child will have.
Very soon after our daughter’s diagnosis we spoke to a health advisor at the UK spina bifida charity, Shine. She said that within a few months we’d know more about spina bifida and hydrocephalus than most GPs. This is not a comment on GP training but shows that when you’re suddenly immersed in the care and treatment of a condition for a dependent then your knowledge of that area naturally grows.
It is for these reasons that I have compiled the list below. It is not exclusive by any means, but it might help to start others thinking about how to make our youth work more accessible for children or young people with a physical disability.
Parents/carers of children with a disability often have to fight many battles to do with health and social care, mainly due to funding issues. We don’t want the Church to be another battleground where they feel they need to push for things. They will soon tell you if it is, either that or you’ll soon see the child withdrawn from the children’s activities.
Jesus himself said, “Let the little children come to
me and do not hinder them, for to such belongs
the kingdom of heaven.” (Matthew 19:14).
Jesus could so easily have refused to see the children, who were generally regarded as an inconvenient nuisance in that society, but knew that they deserved time and the opportunity to see him. He knew their importance and worth. Even though it may take effort incorporating a child with disabilities into our children’s programme, it is the right thing to do and is of infinite worth.
1. Be prepared to change…the environment.
Do access areas need ramps? Are the activities/meetings near disabled toilets? Do you have disabled toilets? What is movement like around the building? Are there internal steps in your building and do you require children to use them during meetings? Can your activities be carried out in larger rooms so there is more room for mobility? (Children in wheelchairs may need more room to manoeuvre and those who have reduced mobility but can walk may find too many children in a confined space a trip hazard.) Is the lighting suitable? Are hand rails needed? Don’t forget to think about the weekend away venue too and not just the weekly activities!
2. Be prepared to change…the programme:
The running order of a session may need to change to allow time to mobilise between or within activities. You could have other activities alongside the more active ones so there is choice. Alter activities to make them inclusive, eg. try wheelchair basketball (find a few old wheelchairs that are not being used (easier said than done I know!) and check out the rules online. Able bodied people can play this and scoring is dependent on level of mobility). Blind football can also be played by sighted people and the rules can be found online. You can make up games and rules depending on the needs of your children.
3. Nothing need be a limitation for inclusion.
It’s only us who put barriers in the way. Anything is possible and accessible; it just takes a bit of ingenuity and time to alter events. But, as the example of Jesus above shows, it is extremely important for everyone to feel included.
4. For help with ages 1-3
Speak with health professionals in your church or outside agencies for advice and
ideas. Speak to the parents/ carers too, they will probably have loads of ideas.
5. Very similar to age 4
Liaise constantly with the parents/carers. They will explain the situation as it is, give background information and show you what they find works best for their child. This is the best way to find out their needs and to begin to get to know the child.
6. Don’t be patronising.
It’s often hard to know whether you are being patronising, but try asking a fellow youth worker whether they think you are with the child.
7. Allow independence.
For example, don’t rush things. If they aren’t quite able to grab hold of something with their fingers, let them try for a little while unless it’s obvious that they’re in pain or discomfort. If they ask for help, then help. Basically, don’t “molly-coddle”. In my experience, most people with a disability want to try things for themselves and don’t want too much fuss.
8. On the other hand…
Some children with a disability have learnt a dependence, so you may find them asking you to do things more than they should. It can sometimes be perceived as laziness. It may be. It’s hard to work out. But with gentle encouragement, you may find they’re doing more things for themselves.
9. The hidden …
There could be more hidden forms of physical disability that you’ll need to account for. For example, toileting needs.
Make sure all your leaders are aware of the most important immediate needs of the child. (Everybody doesn’t need to know everything!) In this way all the leaders can be keeping an eye on them. It’s worth thinking about suitable leaders who can discretely come alongside the child to encourage them, so they feel included. But it’s also important that the child doesn’t feel singled out in an unhelpful way.
It may be necessary to appoint a leader who works with the child one-on-one depending on their level of need. This person can be their “key worker”, when the parent/carer is not around and will inevitably know the child better than other leaders. It can help liaison between the children’s leaders and parents with the information being channeled through them. It can also create a trusted person for the disabled child to go to. If there are any health professionals/social workers/carers in your church, then encourage them to join the team so their skills can be used to support the child.
11. Encourage an inclusiveness
among the leaders and children. Be good role models for the children. If a reference needs to be made to the child’s disability then talk about being “different” rather than “special”, so the other children don’t feel inferior and the disabled child doesn’t feel better than the others. If friendships are difficult then be thinking of suitable children that you could discretely encourage to come alongside them.
12. You will be taught by them!
Expect the unexpected. Don’t put limitations on what you think they can do. The disabled child will often surprise you!
13. Be patient with the parents/carers.
They may well have had a lifetime of offering care and may find this quite attritional. If they don’t respond too well to you sometimes, try not to be mortally offended.
14. Have fun!
Children want to see others having fun and it is catching!