How to COPE as a PARENT of a CHILD WITH SPECIAL NEEDS
With the birth of a child, life of family changes significantly and each of its members has to adapt to the new situation. When the child is born with a disability, in addition to regular adaptation, the family has to cope with stress, grief, disappointments, and challenges, which may lead to a serious crisis or even disruption of family life. Bringing up a child is hard enough for any family. But for the parent of a child with special needs, worries about their future can be overwhelming. Not only is it three times more expensive to raise a child with a disability, but parents often lack the financial and professional support necessary.
Parents must coordinate assessments, evaluations, and various treatments while maintaining contact with many professionals, institutions or services. They find themselves faced with important decisions on behalf of the child, decisions on management of the child with disability, and economic decisions that will affect the whole family. The event of a child born with a disability is always a big challenge for the family, but early intervention and support may help the family to adjust and become positively involved in the care and development of their child, even if that child is in need of special treatment.
Major challenges faced by the family relate to handling following issues:
- Overcoming the shock and disappointment of having a child with disability
- Fear of facing the social stigma
- Anxiety, obsessions, fearfulness, depression and irritability
- Behaviour problems – like tantrums, aggression and ADHD problems
- Eating disorder and self-injury
- Developing a positive relationship with child
- Teaching communication
- Teaching activities of daily living like toileting, eating, dressing etc.
- Teaching desirable behaviour, social and new skills
Come out of the initial shock, anger, frustration, guilt, shame, denial or hopelessness and anxiety. Accept the fact that you will have to put in extra efforts to take care of your child. So bring your life back to normal as soon as possible and take proactive steps to handle the challenge
Do not feel shy in seeking help from qualified person and people facing similar challenges. Learn about your child’s specific disability, join groups with similar interests and above all never ever develop a feeling of “Why Me” or curse your fate or the child. Share your concerns and strategy with family and friends and take the help of people with positive attitude and form a support group. Do not feel that you are alone in this problem.
Keep off from people with negative frame of mind and those who make you feel a victim. Be prepared to experience being socially rebuffed by friends and strangers or being treated inappropriately by poorly informed people. Put in extra efforts to find ways to handle your own pangs of negative phases along with the child and his physical and behaviour issues. Always remain positive and optimistic even when progress appears to be insignificant or slow.
Encourage your child to do his activities independently to the extent feasible. Involve the child as much as possible in household activities. Channelize his energy in various activities. Keep him busy and engaged. Keep encouraging him. Do not pamper and make him dependent on things that the child can do on his own. Let him try, let him struggle to do things keep motivating him.
Being a parent is hard. Being a parent to a child with special needs is harder
There is no doubt that it is extra hard to be a parent to a special child but it can also be rewarding. It can make us extra passionate and our life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.
Seek Professional Help
Get in touch with medical professionals, psychologists, therapists, special educators and experts for learning about the disability and developing a holistic intervention plan at the earliest. You may put your child in a rehabilitation, training and therapy centre but you must also be prepared to learn various techniques from these professionals to follow them at home where your child spends more time than he would spend at the centre. This approach will definitely help in achieving the full potential of your child much faster.
Communicating with the child
Learn communicating methods for knowing and responding to the needs of the child. Generally children with disabilities are not able to communicate their requirements in absence of speech and language development. Try to develop communication with the child in a manner in which initially the child needs to respond only in “Yes” or “No” through the movement of hand, eyes or head at the same time explaining things to him in short sentences for developing his understanding of the language.
Encourage the child to express the needs through gestures, signs or sounds. Learn techniques from speech therapists for his speech and language development. Children with disability have their own likes and dislikes. It is important to encourage their strengths and provide them with outlets for their interests and hobbies.
You are not alone
There are many people with similar challenges like your child. Get in touch with them and create a network of people. You will learn many things and solutions to challenges as well as support from them. Now a day’s internet and social media is a very good medium. Lot of groups are available which you can join and share your difficulties and learn from them. Do not feel that you are alone. But a word of caution- Never compare with the siblings or classmates in the care centre – each child has his own pace of learning and developing. Do not loose heart by comparing with the progress of other children even in the same disability type. Remember that each child is unique with individual strengths and weaknesses. If you are not satisfied with achieving the developmental milestone, talk to the care giver and find out the reason and possible solution but don’t forget that your child is a child first.
Celebrate little things
It’s also important to make time to play, laugh and just enjoy with your kids. Read stories to them, engage with them with what’s important in their worlds. Celebrate those little accomplishments that may seem insignificant or small to others but are huge for children with challenges. They may have learnt it very late or may not even have mastered it but take it as a big achievement and celebrate it with appropriate response – may be with a smile, a hug or a treat. Share it with your group and those who love your child.
Do not lose your Own Identity
A parent of a special child is much more than a parent and your identity should not be restricted only as a parent of special child. You have needs and a marriage and may be other normal kids to take care. Do not let your responsibility as a parent, neglect your other roles. You also have to live and enjoy your life and let parenting not become drudgery and make life miserable. So make sure that you take time and create enough opportunities to enjoy other interests and life in general with your partner.