“I wouldn’t change you for the world, but I would change the world for you”, said Amy Wright, the mother of two kids born with Down’s syndrome. In a world where even those considered most perfect are judged each day, one cannot really imagine what it would be like for children with special needs and their families. Such families are on a taxing lifetime journey that is both emotionally and financially challenging.
Managing a child with special needs is not the responsibility of the individual families alone but that of the society at large. In spite of increasing awareness regarding the love and support that these children should have, we as a society keep ignoring our responsibility. Know a special kid in your school or colony or community or an organization near-by? Know also that they and they parents need you. Here is a handy list for not just the parents but all of the society to rise up and learn to spend time the special ones:
Be patient: Every child is trying and requires your patience. A special kid might take a lot of time to do certain things that their peers can do quite easily. Be kind and patient with them. Though it can be very difficult to stay calm when dealing with tantrums or demanding behaviours, always try to focus on the good as a child reacts well to positivity.
Interaction: Special children may be shy or may get angry sometimes when unknown people try to speak with them. This should not dissuade you from trying to interact. Be polite, maintain eye contact, and keep encouraging the child soothingly to have a conversation with you.
Keen observation: Keep note of all the ways a special child communicates to you. It may not necessarily be verbalized by the child, so pay attention to all of the child’s behaviour.
Don’t fear disability: It may be new to you, but to a kid with special needs, it’s a fact of life. There is no need to get nervous or antsy, instead be calm and affirmative around the child.
Be flexible: Teaching special kids a particular concept – be it educational or a value might require its presentation via a game or skit or hands-on art project. Having a fixed teaching pattern can hamper the development of the child; hence utilize a variety of teaching patterns.
Be consistent: Deviation from a specific routine that the child understands and gets used to can be of great dilemma to the child. Avoid contradicting instructions, keep it simple and consistent.
Use visual, auditory or tactile cues: Having the right cues in any environment can encourage the participation of many children with special needs. For example, taking pictures of their daily routines and activities to familiarize them, using index cards for simple written or pictorial instructions, singing or clapping or whistling to indicate a specific activity, gently touching the child’s shoulder to get attention and so on.
Promote independence: Avoid absolute control over special kids by giving them little say in what happens to them. This deprives them of decision-making skills required to become independent. Offer them choices to choose from, talk to them, and listen to what they have to say. Simple things like letting them choose which shirt to wear or which fruit to have for snack or which colour to paint a picture in can encourage them.
Have back-up plans: In the world of special needs, there is always a Plan B, and usually a Plan C for every situation a child may go through. Ensure space for the child to calm down and move freely if things go haywire.
Cheer their strengths: Look out for the activities they like doing or excel at and encourage them to pursue these talents. Be their personal cheerleader!
Let them know their worth: Having a low day, persuade them to give you a hug. Tell them how much their hug means to you and how it lifts your spirit. Take their help depending on their strengths. For example, if they like painting, make them prepare cards for occasions and send it out to your friends and relatives.
Be Positive: A positive attitude is the most essential quality for anyone who works with children with special needs. Throw aside all those assumptions and negative thoughts, jump in with a lively optimistic attitude always.
Special note for parents –
You are not alone: Make sure to reach out to support groups and build a strong network around you and your child.
You too need care: Do take care of yourself because you are all your child has.
It’s okay to be imperfect: Everyone makes mistakes. Do not penalize yourself for those goof-ups you make. You won’t always get it right so learn to forgive yourself.
You are a superhero: You are not just a regular parent; you are a therapist, nurse, doctor, friend, confidante and much more.
Therapy and play go hand-in-hand: Not just your child, you too need therapy and you can let down a little once in a while.
Don’t lose yourself: You are much more than just the parent of a child with special needs. Find things you love doing and do invest time in them.
Don’t let anyone let you down: Remember most of the people out there do not know your child as you do. You are doing a wonderful job; don’t let anyone tell you otherwise.
Trust your instincts: You know your child the best – sometimes even better than the doctors, therapists and teachers. Do not be afraid to fight for your child and their needs.
A loud shout-out to all those amazingly strong parents who against all odds will move heaven and earth for their special ones!
Written by :
Ms. Chinna Philip,
Intern, Content Development,
New Delhi Children’s Hospital & Research Centre (NDCHRC)