March 21 was World Down Syndrome Day and April 2 was World Autism Day. Amid all the awareness and education programmes, the one being left out is the parent. As an educator I know how stressed these parents are with managing daily chores, therapy for their special child, support for the neurotypical, a regular job and very often parents would cry: “Why me teacher?” Their determination and resilience were always awe-inspiring, and the fatigue and loneliness on their faces so real. Today I urge you as parents to reach out to these kids and make life a little easier for these parents. My son had a visually-impaired classmate and I know how grateful the parents were for that play date once a week.
So, first don’t pity these parents. Pity can make them feel more vulnerable. Appreciate their effort and empathise with them. Let them know that they are doing a great job – “Amazing how you find time to do all your chores!” Point out some positive outcomes – “Nice to see___ carrying his/her own bag to class”. It doesn’t have to be grand but sincere and genuine.
Be a friend who knows what the ‘special needs’ are and learn to engage with the child. Read a book, ask a friend or go online so you can jump in at gatherings or events and interact with the child. Teach your children and family members too, so that the support base becomes wider.
Very often the sibling of these kids needs attention too. Take that child out, drop him/her for a class, or take that child out for a treat. This gives parents a breather and helps the sibling also do fun activities.
Lend an ear. It doesn’t cost much just your time, a cup of coffee and a listening ear. Very often advice is not needed, one just wants to be heard.
Set an example of inclusion. Find ways to include these children in everyday-activities like climbing the steps of a slide or getting children to play simple versions of the game so that the child with special needs can join in. Games like hide and seek or chain can allow a child to be a part of the gang.
Offer to take a walk with the child so the parent can get a break and sit down to take a breather for a while. I have seen these amazing parents running around on auto pilot juggling roles with such aplomb, never realising that they have needs too. It will be good for you, give you a sense of perspective and helps build patience.
Cook a meal or a dish for the family so that they get a well-deserved respite and a chance to have one of your special dishes.
Get familiar with the child and his/her routine so you could sit with the child in a park or at their home and give the parents a stress-free break. Begin with short periods and gradually build up to a time that is mutually convenient to both, remember to keep the child’s comfort food or toys with you and let the parents initially be close by. A few dos you can follow when a child has a meltdown.
Lower yourself so that you are at eye level with the child
Speak in short sentences
Don’t ask many questions
Place you hand on the child’s and say it’s all right
Let the child talk and just listen
Be calm yourself
I would like to conclude with this poem by April Vernon
Special Needs Mom… A look inside
You may think us ‘special mums’ have it pretty rough.
We have no choice. We just manage when things get really tough.
We’ve made it through the days we never thought we’d make it through.
We’ve even impressed ourselves with all that we can do.
We’ve gained patience beyond measure, love we never dreamed of giving.
We worry about the future but know this ‘special’ life’s worth living.
We have bad days and hurt sometimes but we hold our heads up high.
We feel joy pride and thankfulness more often than we cry.
For our kids we aren’t just supermoms. No we do so much more.
We are cheerleaders, nurses and therapists we don’t walk out of the door.
We handle rude remarks and unkind stares with grace.
Even though the pain they bring cannot be erased.
Therapies and treatment routes are a lot for us to digest.
We don’t know what the future holds but we give our kids the best.
None of us can be replaced so we don’t get many breaks.
It wears us out, but to help our kids, we’ll do what it takes.
We are selfless, not by choice you see. Our kids just have more needs.
We’re not out to change the world, but want to plant more seeds.
We want our kids accepted that really is our aim. When we look at them we just see kids.
We hope you’ll do the same.
One of my friends with a 25-year-old child on the spectrum came back home after a mastectomy. Her son asked her: “Is your heart okay, is your brain okay? Are you okay?” She reassured him and he left later he came back stood very close to her and whispered, “Mama don’t leave me, don’t die.” She says all the years of him not responding or emoting was erased right then.
(Writer is a volunteer in local schools and a trustee with Sethu)