Family, Friends, and Playmates

Damini has just gotten back after a 3-day outing with her favorite aunt, uncle and cousins. As you can see from the pictures she had a blast.

Sixteen years have taught us the absolute necessity of co-opting as many people as possible into the process of rearing a differently abled person: family, friends, neighbours.

People with Down syndrome have an extra serving of sociability. They are by and large very affectionate, cheerful and easy to get along with.  Yet they somehow find it difficult to sustain interaction with their peer group. They do not possess the mental parity that enables one to chat, hang out, or kid around with people of their own age. I’ve helplessly watched Damini hang around on the fringes of a group, unable to overcome a social isolation that was more often than not self-imposed. As far as the other kids are concerned, they are the recipients of a benevolence that is atypical to a regular friendship. But there’s only so much mediation that can happen to facilitate socialization before it becomes completely contrived, thereby defeating its very purpose.

Of course we started off adamantly determined to make sure that Damini would have friends closer to her age. She went to a regular school until last year and it seemed to work initially. When kids are really young, interactions are simple and involve a lot of play and physical activity, so she fit right it. The gap started showing as she got older and her peers moved on to more cerebral interaction and complex forms of activity. As the years went by it became more pronounced.

 The effort to mainstream her education wasn’t completely futile. It gave Damini a lot of exposure to the ways of the average children of her age. They helped her get used to being in large groups and develop ways of dealing and interacting without being overwhelmed.

Even so, where is the outlet for her to express all that extra affection she has for the world? How does she build relationships that are independent of us? Of all the challenges I’ve faced this has been the most agonizing. You want your kid to have friends.

Something that helped, and we did it more for our convenience than anything else, was leaving her in the care of various trustworthy [and risk taking!] people regularly. It could be from anywhere between 10 minutes and 3 weeks, for anything from errands, to work…to a holiday [when desperate for a break].  With the common denominators being respect, affection and kindness, Damini has been exposed to diverse lifestyles, interactions, age groups, activities, entertainment, and ideas of discipline.

Our neighbor Vidya and her family would keep her when I had errands to run. Her son was Damini’s first crush.

Vijayta her sister [not always willingly] and her friends would babysit her. She would tag along with them wherever they went. Knowing how much she liked birthday parties, she was invited to all of theirs.

Grandparents, uncles and aunts have been imposed upon with impunity when we needed a longer break.  This meant having to deal with a more traditional approach to child rearing. It also meant bargaining and fighting for television time with her grandfather, which worked out because she found someone to squabble with.

My cousins and their really sporting spouses have actually left their homes to live in mine so as to be with her while we travelled.

Friends have been more than accommodating a number of evenings when we felt like a movies sans Damini. [Priya, Dushyant, Lakshmi and Arcot are some of her favourite people].

All these people have become her social group. These are people with whom she has forged relationships that are independent of us. In her cousins, who are at least 5 years younger than she is, she has found friends. She plans sleepovers with them. When she feels like it, she calls my brother and his wife [Rajesh and Bharti] and makes plans to visit them.

My cousin’s husband Keerthi is her closest buddy. Any family gathering will find her attached to 
his side. She calls her grandparents almost every day to discuss menus for the day. Das, of course, is her play buddy. They go cycling, and play football and hockey together.

My learning from all this:

-       People take their cues from us. If we treat her with respect in social situations, others do too. If we are confident that they can care take care of our kid, they feed off that confidence and trust. Of course we always give detailed written instructions, what we affectionately call ‘the Damini operation manual’. It contains schedules, medications, emergency numbers, do’s and don’ts. For a while there was a ready copy lying in my desk.

-       One cannot be very fastidious about how others take care of her. Given that she is treated with respect and affection and common sense, we just have to trust the other person’s ability and allow for certain latitude in child rearing practices. If anything, this builds flexibility.

-       We have to make peace with the idea that Damini may never have friends of her exact age. They will always be much younger to her or older than her. The most important question is, are her basic social needs addressed? The answer will have to be a definite yes. From 76-year-old Ram Mohan Rao to 5-year-old Aryan, she has people to do various things with.

-       There will be occasions where she will be just a spectator, wanting to be a part of the action but unable to. One has to learn to live with that.

One thing I give thanks to whenever I think of it is that we belong to a big happy-go-lucky Indian family in a happy-go-lucky society. That in itself has made it infinitely easier.