Raising a child is a huge and challenging responsibility. When that child has a physical or intellectual disability the challenges can seem even greater. Children with disabilities may have special educational needs, or require specialist equipment or support. Parents or carers of these children may need additional practical and emotional support to help to cope with their child’s demands.
Getting to know families in similar situations can provide an important support network, enabling parents and carers to share help and advice and to lend an understanding ear when discussing the unique challenges of their situation.
Preparing for a child with a disability
The arrival of a new family member will always mean change and, if that new arrival has some type of disability, those changes can seem even more dramatic. It is natural for this to cause some level of uncertainty and stress.
If the child’s disability can be diagnosed before birth, this does give the family some opportunity to prepare and consult with networks that can provide support and advice. Receiving the news is rarely easy. Every case is unique and no two sets of parents will react in the same way. Parents should feel able to express their feelings and reactions to the diagnosis without fear of being judged by those around them.
Ultimately, acceptance of the diagnosis and resulting prognosis, is often accompanied by a period of adaptation, putting things in place to provide a good quality of life and wellbeing for the child, as well as making preparations for the future.
Although these aims may not differ massively from those of any other parent – in that they want the best for their child – the means and resources for achieving them certainly can.
Research your child’s disability now and keep researching
Do as much research as possible about your child’s condition: the more you know, the more you will be able to help them. This initial research phase will see you speaking to professionals who can explain what is happening with your child, as well as how you can help to support them at each stage of their development. You will come across support networks, professionals and charities that can help to provide support and advice and give you information and access to the latest physical therapies suitable for your child’s condition, these can help to improve and maintain your child’s muscle strength, flexibility, balance and motor skills.
Research may also include looking into grants and provisions available for your child. This may include government benefits, financial support to purchase specialist equipment, access to appropriate education, transport and home modifications.
This research will be ongoing to take advantage of new developments and support as they are made available.
Support programmes, care centres and family associations
Schools and other educational institutions, as well as local councils and associations, usually have programmes developed for the parents and families of children with disabilities. There are also support groups that focus on bringing people together to share their experiences.
Support programmes are important at a training and educational level, and can be an essential means of information. In them you will find professionals who can advise you on the special needs of your child and on how they will continue to develop in the future.
Meanwhile, family associations are there to provide moral support, especially during the first few years, which can often be the most complicated for parents. Getting to know and being around other families that have undergone or are involved in similar situations to your own helps your child to interact with other children with the same disability in a safe, comfortable and supportive environment.
Working with the child’s educational establishment
Working together with the child’s education or childcare provider can be fundamental in ensuring your child receives the support they require. Having a close relationship with your child’s key worker, or teacher, allows you to provide them with appropriate updates so that they can tailor the curriculum to give your child the best opportunities in terms of exercises in team work, social integration and relationship building, as well as the more traditional areas of literacy and numeracy.
Socialise with other families
Socialising with families with children with similar disabilities can provide great emotional and practical support, allowing your child to interact with people they can relate to and build friendships and relationships. This can help with their emotional development. During your research you are likely to come across various groups and clubs that look to engage children with sports, as well as offering different recreational activities in line with their interests. Don’t be afraid to give these a try. you may establish some strong friendships and develop a good support network.
Plan in some play opportunities
Informal play dates and other opportunities to socialise (such as arranging a small party for your child’s birthday) are also important. To make the most of these interactions pay close attention to which children your child gets along with best, what games and activities they enjoy and how long a period of socialising they are comfortable with – often shorter periods of socialising may be preferable.
Don’t be afraid
The prospect of finding new friends who are in a similar situation to you can seem daunting, but be brave – often the right people come into your life when you least expect it.
Socialising with older and younger children
Don’t worry too much about finding children of the same age. Interacting with people of different ages can be beneficial. If your child is interacting with younger children, this may help them to take the lead and to feel important as they assume the role and responsibility of being the older child. Being with friends with older children can also be positive. Their level of patience and maturity is different again, meaning they can often engage with your child on a deeper level when conversing about their shared interests.
Consider animal therapy
A pet has the potential to complement your child’s existing friendships and can reinforce a sense of happiness and companionship.
Looking after a pet can help to develop a sense of responsibility and empathy, as well as providing an opportunity to show unconditional love.
Always remember that taking on a pet is a big responsibility, so only make this commitment if your child and your family have the time and resources to be able to provide the pet with the care and attention it needs. Children’s farms and zoos can often provide opportunities for children to spend time with animals without the responsibility of owning an animal.
Further examples of animal therapy can include equine therapy and the use of therapy dogs.
Your child has unique abilities
Children with physical disabilities can often feel inadequate when comparing themselves to their contemporaries. This means that it is vital to boost their self-esteem and give them faith in their abilities. Always be open with your child about the nature of their disability and any limitations this may place on them, but also focus on the opportunities available to them and the things they can do. It is important that they understand that they are as important as any other person and have just as bright a future.
The spirit of ‘overcoming’ is an important theme for children with physical disabilities. Sports can be a good opportunity for them to get to know their bodies and gradually overcome any assumed limitations. Speak to health professionals to find out which sports would be most suitable for your child and research appropriate groups.
The equipment your child uses is also vitally important in allowing them to interact with their environment. Sunrise Medical offers a wide range of both manual and electric wheelchairs for children, as well as positioning chairs enabling your to find the right mobility solution for your child.
At the end of the day, the most important thing is that your child leads a fulfilling life, combining education and leisure, with fun and responsibility and that you, as parents or carers, support their development and share in their successes.