Jan 24, 2022 in Counseling

Raising Children with Disabilities

Being a Therapeutic Counsellor and living with multiple disabilities, my journey has been one of learning and growth

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Being a Therapeutic Counsellor and living with multiple disabilities, my journey has been one of learning and growth. My experience of having my own children and supporting children in various capacities has allowed me to have hands-on experience in supporting families with disabled children. 

Parents often ask me for ideas and tips for supporting their children with disabilities. This led me to put together some tips which I have found helpful for myself and the families I have supported. 

Time Management

Supporting our children always needs some form of order and organisation. One thing I feel that is most helpful is good time management. Families living with children with disabilities will notice that time is much more precious. Some everyday tasks which we can take for granted will need extra time. Extra time to prepare a meal, to assist your child to get dressed, time for domestic work and the care and supervision of your child and let’s not forget free time. 

Having a structured timetable, whether it be in the form of a diary or Day/week planner, knowing your daily, weekly or monthly routine aids to bring order to what may usually feel like an uncontrolled time. For some children with disabilities routine and consistency play a big part in helping them to feel safe. Structure and planning encourage their ability to develop helpful learnt behaviours which build confidence and self-esteem. Good time management allows for the time to build better relationships with your child as you will include time to play and communicate as a family. All too often families can become overwhelmed with caring for their disabled child because all their time will be taken by the struggles of managing challenging behaviours or discourse which can occur within the family due to fatigue and lack of structure. 

Building a timetable together as a family, including the needs of all family members is very beneficial and can be a fun process. Thinking of activities, needs, exploring methods & strategies and personalising them to your own family likes and dislikes. This opens the door to a more explorative pathway of learning and developing supportive ideas for the family as a whole. 

Taking Care of Yourself

What I noticed over my years of working with families is that families with disabled children often feel that they are not doing enough. They are concerned about their child’s development, concerned if they are getting things right. This then leads to feelings of guilt which not only has an impact on the child but also on the mental & emotional health of the parent. 

Try to remind yourself that if you are able to get up each morning and be there for your child then you are doing a good job! Even on those days when you're really struggling, you're still doing a good job. Those days when you question your ability demonstrate that you care & that you are trying and that’s what matters. You also need to remember that if you are not looking after yourself then you will not be able to look after anyone else. Let’s take the analogy of the aeroplane emergency procedure: You always need to place your mask on first before you can help anyone else to put theirs on. I live by this and I remind myself every day to make time for myself, for my wellbeing and for self-care. Once I’m fully functioning then I know I’m able to support others to the best of my ability. It’s the same for parents looking after their disabled children, learn to take time for yourself, including rest time for your child and for you, including fun time. Factor in time for walks, spas, date nights or even weekends away where possible. Self-care is essential and encourages balance in your family life. 

Remember You’re Not Alone

Many parents & families have expressed feelings of embarrassment when we have discussions about asking for help. Whenever I’m unsure of anything I can research, or I can ask for help. Living with multiple autoimmune conditions myself, I often had a lot of questions and I realised that the more I spoke to people the more support and advice I got. I joined support groups and was then able to develop my own support network. There are many different ways of getting help….

Support Groups

Sourcing a support group that relates to your own experiences can be extremely useful. Speaking with families that are going through similar experiences or have experienced things which you are now facing can be a great resource of support and knowledge. 

Family and Friends

Talking to friends or family not only gives them a better understanding of your lived experience but it also allows you to have a sounding board, people to share your worries & triumphs with. You could be surprised by the amount of support you get from this.

GP

Speaking to your GP can help by the advice and support they may give but also help with sourcing support groups/networks and funding that may be available to you. 

One thing I will say is it's always good to talk, share your worries, your concerns, your questions and your successes. As parents we all have our doubts, as parents of children with disabilities, those doubts can increase tenfold. Remember we are always in a state of learning, allow yourself to be in a space of learning, development and growth. Remind yourself that progress is often slow and steady. Keep up the good work and take each day a step at a time.

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