Being a parent, you have to ensure that you are happy and at peace so that you can raise your kid in a happy, positive, and supportive environment. In this era of social media, you can also join support groups and communities and connect with other patients or parents dealing with the condition and striving to have a better shot at life.
What exactly is Down’s syndrome?
Down’s syndrome is a genetic disorder caused due to alterations in the chromosomes. The condition occurs when abnormal cell division occurs, resulting in extra genetic material from chromosome 21.
The disorder leads to defects in facial appearance, intellectual disability, and developmental delays. While people with such conditions often face neglect and discrimination from society, what often goes unnoticed is that parenting such kids can be extremely challenging. It requires patience, empathy, a positive attitude, and much more!
Down’s Syndrome & Its Professional Intervention:
Early intervention refers to a range of specialized programs and resources that professionals provide to children with Down’s syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers. Research indicates that early intervention improves outcomes for children with Down’s syndrome. A variety of therapies can be used in early intervention programs and throughout a person’s life to promote the greatest possible development, independence, and productivity.
Physical therapy includes activities and exercises that help build motor skills, increase muscle strength, and improve posture and balance.
Speech-language therapy can help children with Down’s syndrome improve their communication skills and use language more effectively.
Occupational therapy helps find ways to adjust everyday tasks and conditions to match a person’s needs and abilities.
Emotional and behavioural therapies work to find useful responses to both desirable and undesirable behaviours.
Children with Down’s syndrome may become frustrated because of difficulty communicating, may develop compulsive behaviours, and may have Attention Deficit Hyperactivity Disorder (ADHD) among other mental health issues. These specialized therapists try to understand why a child is acting out, create ways and strategies for avoiding or preventing these situations from occurring, and teach better or more positive ways to respond to situations.
Guiding Tips For Parents To Raise A Child With Down’s Syndrome
The question that haunts the parents when they find out their babies have Down’s syndrome is how do we raise the child? Will we be able to raise the child? How to begin with? What are we supposed to do? What should not be done? And the list goes on!
Here we have a few parenting tips that are easy to follow and shall be your saviour in helping you raise your child with Down’s syndrome:
Willingness to learn: As a parent, proactively seeking information on the subject will help you parent your child better. Researching, gathering information, and staying informed will help you provide a better quality of care and life to your baby.
Planning it out: In most cases, this condition is usually diagnosed before the baby’s birth, during routine prenatal check-ups. Hence, it is important that you consult your doctor before birth and be prepared for what is in store. A baby about to be born with Down’s syndrome implies that he/she would require extra care and attention, and would have to stay for extra days in the hospital under medical supervision. However, the consultation with the medical professionals and Down’s syndrome specialists should continue beyond the birth as well, to seek assistance and guidance on raising these special babies with extra care and attention!
Seeking medical assistance for your kid: As a parent, you will have to understand that your baby is specially-abled and will need constant medical assistance. Babies with Down’s syndrome exhibit difficulties in the growth and development of their physical as well as mental health. They are usually slow even in basic activities such as crawling, walking, talking, etc. Hence, the best way to ensure that your parenting journey goes smoothly is by scheduling regular visits with a doctor you can trust and rely upon. With physiotherapy, occupational therapy, speech therapy, and special education, your baby’s growth and development can be boosted and navigated in the right direction!
Giving your child the freedom to live their life: As the babies grow, they might feel restricted due to the limitations imposed on them because of their condition, as well as enforced by you as a parent. This can make them feel as if they can’t lead their lives as per their choices and could render a significant psychological impact on their mental health.
In such a scenario, you have to make sure to let loose at times. You have to allow them to make their own choices and stand by them throughout. Simple decisions such as letting them choose what they want to wear, what they want to eat, or where they want to go out will give them the happiness that their life is their own! Also, letting them take certain risks and figuring out things on their own will give them the confidence that they can lead an independent life despite being special.
But you must always ensure that you are there with them as their pillar of strength and communicate with them openly about what they are going through and feeling. Supporting them and knowing when to give them the liberty at the right places, and hold their hands during appropriate situations is essential as a parent!
Have a routine: The life expectancy of babies with Down’s syndrome increases when they have a fixed routine and a healthy lifestyle. Waking up and sleeping at fixed times, consuming a healthy diet, indulging in physical activities as per their convenience and health, studying as well as being involved in co-curricular activities, all these basic steps will give them access to a better quality of life.
Self-care is the key: Being a parent of a baby with Down’s syndrome is a journey filled with roadblocks! Juggling personal and professional lives and a specially-abled child can be exhausting for you at various levels. Hence, it is important that you often take out ‘me time’ for yourself and involve yourself in activities that are therapeutic for you.
As the kid will grow, their needs and demands will also grow and evolve at the same time. Hence, it is essential that you are happy and in the right frame of mind to manage all the responsibilities as well as your special kid. You need to understand that pampering yourself isn’t selfish and you deserve it! Share about your parenthood journey, socialize, and seek external help to take care of the baby whenever and wherever required. Opting for therapy if things get overwhelming or uncontrollable for you is nothing to be ashamed of and can in fact help in handling yourself, the baby and the situation in a better manner.
The bottom line is that your Down’s Syndrome baby is indeed a baby at the end and would need your love, support, and guidance at all walks of his/her life. Hence, most importantly, you need to understand and accept the fact that your kid is special and requires assistance. You need to take care of yourself as well as the baby and the key to raising a baby with Down’s syndrome is to go easy on yourself as well as the baby!
(By Shuchita Dua, Clinical Head at Mom’s Belief)