Bringing up a child with cerebral palsy

by Lesley Moore. One mother’s story – how the condition affects her son, and how she has found the parents of other children with special needs to be the best support.

Parent's hand holding baby's hand

My story

I'm a parent to a five-year-old little boy called Cameron who has severe cerebral palsy, learning difficulties and a very strong personality!

As I chose him (I am adopting him) I haven't gone through the feelings of loss and shock that many birth parents have - but I still have all the trials, tribulations and pleasures that having a little boy with difficulties brings. The last 18 months have been a huge learning curve for both of us.

I have worked with and taught children with special needs for a number of years, so I have developed a number of skills that are helping me with Cameron. All parents of children with special needs develop amazing skills in parenting their children. The professionals and the parents themselves should not underestimate that!

Physical difficulties

Cameron is unable to sit unsupported and cannot access any toys or activities successfully without physical support. He has major problems in sitting in specialist seating but his ability to do so is increasing.

It is very important for the development of children's learning abilities that they are in an upright position, sitting or standing (with support) as this gives them the proper visual view of the world around them. They are also able to access toys and activities to greater effect.

I encourage Cameron to be as physically able and as independent as possible through daily physical activities. He's encouraged to sit on a small stool with as minimal support as possible, to stand (with maximum support) and to transfer from different equipment.

When appropriate I carry or hold him in a way that encourages as much of his own physical control as possible. We go to a Scope 'School for Parents' group that has shown us both that you cannot predict what Cameron may achieve physically. He has amazed me on many occasions by what he has achieved!

I have a strong belief that children with disabilities, particularly those with severe disabilities, should access and experience all the usual and unusual things that society has to offer.

Cameron and I regularly go cycling. He has his own bike although it doesn't have pedals, just a footrest. We go horse riding. We go walking. Initially he was very unsure about being out and about, but with time and frequent different experiences he now takes most things in his stride. He'll let you know if he's not keen!

Control and choice

Cameron's physical difficulties mean that, as yet, he is unable to control his environment or to make choices without him being given the chance to do so. All children make choices and decisions, and children with severe special needs should be given the opportunity to make choices and to have as much control as possible.

Cameron is beginning to eye-point to things he wants so I encourage him to make choices between things that are very important to him – e.g. I show him the Teletubbies or Fimbles video covers for him to choose which show he wants to watch, and I give him the choice of a drink or more food by showing him the cup and bowl.

These all require time and patience as I wait for him to organise his body to give me a response. These may seem like little things, but to Cameron it is giving him a control over what he does - a control that he would not have without someone giving it to him.

Computers and ‘Switch’ activities

Finding activities for Cameron to do with as much independence as possible has been really difficult. We are now the ecstatic owners of a computer touch screen and a single switch system that operates specific computer programmes.

At present Cameron needs some support to access these activities, but in the future he will develop the skills to be independent. The specialist programmes we are using now (which feature bright lights and great sounds!) are great for encouraging the understanding of cause and effect. Children like Cameron have very little opportunity of developing this with normal toys and experiences.

Although the programmes and equipment are expensive, there are some charities and funds available, plus they make great presents - much better than the endless clothes and unsuitable toys that are often given (family and friends please note: I'm not speaking through personal experience!).

Parental support

I have found parents of children with special needs to be the best support. I know some parents informally and some through special groups. They share experiences, information and truthful reports about equipment and services.

We are members of a disability leisure group which has been one of the best things yet. We have been quad-biking, trampolining and abseiling! The children (and parents) get to experience all sorts of activities - and the parents get an informal support network.

Many new parents I meet through work are initially very reluctant to meet with other parents. But if you can get over that, the pleasure and value of sharing your real experiences with others who have been there (or are there at the same time as you) is great.

How CBeebies can help

The CBeebies website has a range of fun games which are ‘switch compatible’. These range from a Teletubbies ‘Peek-a-boo’ game to Something Special’s Magic Painting game.

’Switch’ is the name of the technology which makes access to computers easier for children who have difficulty using a mouse or keyboard. Switch-compatible games are those which have been designed to be controlled by just one or two keys - usually the 'Enter' or ‘Space’ key to select, sometimes the 'Tab' key as well - in order to move between options.

The purpose of supporting technology such as Switch is to give access to CBeebies games to as much of the audience as possible.

To take a look at all the different switch-compatible games on the CBeebies website, select ‘Switch and special needs’ when you are browsing the ‘Play Games’ section.

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Parent's tale

Until I had Cameron, I had not realised what impact so-called minor things can have on day-to-day life. Things like the lack of appropriate changing facilities, shop aisles that are too narrow to get down, able-bodied people parking in disabled spaces! Even though changing these often seems too great a task, I feel that we (as parents) can challenge those responsible and can have an effect.

Lesley Moore, Mother of a child with cerebral palsy

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