It was a normal evening in my kids’ school premises. I was waiting for my son and his class to come back after an excursion. There were Mothers talking out loud, sharing concerns about the bus being late and how they survived the ordeal of staying away from their child for 3 days and then there were Fathers complaining how the trip could’ve been handled better.
The skies were calm and I was sitting on the stairs of the common entrance for the bus to arrive. Aarshia was with me on the stairs, climbing up and down, touching me every time. And then this happened! Three children ( two her classmates) came and started playing on the stairs; running, pushing… I got Mommy active and told them to be careful with Aarshia. When I turned around to see Where she was? I saw her standing in a corner. I asked her to come and play with her friends, but she didn’t move. I thought of asking the children if they would be happy to have her play with them but they had stopped the stairs game and now were busy racing. I called out one girl’s name asking her if Aarshia can join too. She didn’t answer…realising Aarshia is looking at me; I tried again and asked Aarshia instead, if she would like to play with her friends? She didn’t move. I knew this wasn’t usual because she loves to run and as soon as the kids got bored of race and went someplace else, she pulled my hand and forced me to run with her.
One simple incident, nothing unusual but while driving back, I started to think and realized that my fear was indeed coming true. Since the day I got to know about her diagnosis, I had this fear that she will not have friends and she will not be able to form the bonds of friendship that are real and not just based on sympathy on the part of ‘normal’ group. I also know that there are adults with Down syndrome who have had a few ‘typical’ friends while growing up but let’s face it. The numbers are not even worth mentioning.
I read an article about another Mother’s take on friendship where she wrote how in spite of every activity she does with her daughter she can’t give her the gift of friendship and how he is dependent upon the choices of others- of other 7 year olds’. Here is that link…
Down syndrome: Fear, friendship and hope…
According to a British study- named “Does Every Child Matter?” Researchers followed children with
disabilities and their families through interviews and observation for a little less than 3 years. The key findings were that the parents face huge pressure to “make their child normal” and when they are not able to do so after certain years, they feel excluded. The biggest barrier is not transportation or access to places, but ‘attitudes’. I mean think about it, when our children finally get to a mainstream school they might have classmates and only incidental friendship arising out of sympathy but they hardly get to be ‘friends’ with their typical peers and “reasons can be aplenty. There are segregated programs, segregated sports and segregated classrooms to make sure that they know they are different.
Most of the parents I know would agree about how we all make efforts in the beginning but by the time the kids are 8-9, when the social bonds start to happen and when children start making choices about who to be friends with, isolation happens. I still feel uneasy wondering, what’s going to happen in teen age.
I try really hard not to think of all this depressing data and hope it all goes well for her but the truth is unless we do something today, we wouldn’t be able to help things much later. So I am trying to find some ways with which I can help Aarshia have more friends, Down syndrome or typical as long as she have somebody to share and play with.
She did not have any friends in her dance class too. somehow, her moving differently or not singing along made other kids look at her a little differently than everybody else there. Also her wanting to hug and be possessive of everybody wasn’t taken in a good spirit.
She did not have any friends in her dance class too. somehow, her moving differently or not singing along made other kids look at her a little differently than everybody else there. Also her wanting to hug and be possessive of everybody wasn’t taken in a good spirit.
Right now she only has one friend ‘Shivam’ a boy with Down syndrome. We got to know each other because of obvious common grounds and now they both are inseparable. Another good thing is that Shivam’s elder brother and my Son are same age and have similar interests too. All in all a great family to hang out with. We try and make sure of meeting each other once a month, organise play dates with themes, go out to malls or eat out and give our angels time to form a real friendship. They both have this extra chromosome and I guess that also gives them some extra sensitivity to be patient and to understand each other in spite of Aarshia not being able to communicate much. Shivam is a great communicator and can speak better than any other child of DS that I have ever seen and Aarshia has limited speech but they both still get along like a house on fire. Guess that’s the positive or negative of having just one friend. I have tried making her play with other kids in our colony park, she has tried too but it doesn’t last long. Her speech, low tone, not being able to follow rules of the game and not being ‘fast enough’ always comes in the way. A child of 6-7 years needs communication and has little or no patience, so it is always more difficult for Aarshia to be a part of a ‘typical’ play group.
I would like to end this post on a quote that I read somewhere by “David hingsburger” a blogger and an activist in disability sector. He said that “You will always be more important in the life of someone with a disability than they are in yours.”! Don’ t know whether that is a positive or a negative statement but that gives us a lot of food for thought because we’ll always have to prove the prejudices wrong and show that our kids have lot more to offer in a friendship than what is visible.
I would love to hear what all you have done to help your kids have friends and sustain a meaningful relationship and if you have suggestions for other parents. I would love to hear about them.
Love
Aarshia and Mama
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