Disability & Friendships: What I wish I Knew

One of my deepest worries, when my son was diagnosed with a disability, was, would he ever have friends? Now that he is approaching his 30th birthday, I reflect on this important question and write three letters to my younger self – letters that would encourage me to reframe my thinking and actions. With the benefit of hindsight, here are the things that I wish I knew when my son was little so that I could help build his friendships.

Letter one

Dear Sylvana,

The other day you took your son to the library for a magic show.  The first thing you did before the show started was to find the magician and explain to him that, if he called a volunteer from the audience, your son would be the first to enthusiastically raise his hand. The fact that he doesn’t talk and has an intellectual disability never stands in his way. 

You wanted to share this so that the magician was prepared and confident, instead of awkward and confused. Sure enough, your son’s hand shot up as he bounced to his feet and once again he had the opportunity to revel in holding the audience and then taking his bow! 

Do you know what you were doing at that moment? You were sharing a part of your son’s personality, shining a light on his strengths and inviting others to see him as an individual person rather than defining him by his disabilities. You invited him to see your son as a friend, like any other child, one who has a full personality. 

You were inviting the magician to feel comfortable in choosing him from the crowd instead of nervously avoiding him. You focused on your son’s strength and paved the way for others to see that too. You gave your son the gift of experiencing success, through embracing who he is as a person by supporting him to do what he loved. You fulfilled your job as a parent to believe in your child and support him positively to grow up to be the best that he can be.

Importantly, you provided another opportunity for your son to do more of the things that he enjoys doing, which will help him to learn new things and ultimately lead him to thrive as a person and this is where bonding and friendships are formed.

Lesson learnt: The single most important thing I have learned in the last 30 years is the importance of finding your child’s strengths and then focusing on them relentlessly. 

Yours sincerely

The wiser and older Sylvana

Letter two 

Dear Sylvana 

Today your son’s teacher cornered you abruptly while the children were walking into their classroom.  ‘This isn’t working’ she snapped, ‘your son has no friends’. Her words cut you deeply as you held back your breath and your tears. ‘ All he does is stand at the window and watch the high school boys play football’. And then she stormed off behind the children leaving you shocked, sad and angry.

In the days that followed, you replayed this conversation over and over and formulated a reply which you never delivered to her, but that ultimately helped you understand your own son better. Here is what you wished you could have told her at that moment:

“ Mrs Grumpy, friendship is a complex and wonderful phenomenon. There are many different types of friendships. Each of us has different understandings about what makes a good friend.  Each of us has different ideas about what we expect out of our friendships.

 It can be easy as adults for us to impose our thoughts about friendship on children. I believe you have done that with my son and in doing so, you have misunderstood him. 

For my son, being around other people is important. He enjoys watching them, being in their presence, laughing with them, showing care and kindness to them with a hug or tender look. Please remember that when my son is around other children he is learning so much, but above all he is happy.  

Friendships can’t be forced but we do understand something about the conditions in which they develop. These include common interests and time spent with each other. You and I  can easily orchestrate these two things for my son at home and at school. I accept that challenge and invite you to do so too.

However, true friendships involve another magical and indescribable ingredient which is felt between two people. It is this we cannot force. I believe my son will experience this one day when he finds true friendship. Until then, I will focus on my son’s interests and intentionally set up opportunities for him to be around others who share these with him and hope that with time, true friendship will come.”

Lesson learnt: There are many different kinds of friendships. Friendship may look different for our child and this may be something we as family need to come to terms with. In the meantime, focus on your child’s strengths and interests and then orchestrate time with others who share these. 

Yours sincerely

The wiser and older Sylvana

Letter three

Dear Sylvana 

Fast forward to 2019. Congratulations, you have finally upgraded your son’s iPhone which he uses to text, email and FaceTime. About time. He is totally excited with his new phone and you see that he has shared this with his friends. 

He has phoned Benny, who he met through one of his old dance instructors Mircalla. Way back, she had a feeling that Benny would get along well with your son and so she orchestrated a get together over some bongo drums.  Nine years later and they are still mates. Last week Karim walked up the block to Benny’s house to watch the footy with him. When he dressed himself and walked out of the house raising his hand to say ‘bye’ you felt elated at his independence and that he has someone with whom he can share his passion for football. 

He texted his old dance instructor Mircalla and her partner John, who was his martial arts trainer. ‘Can come visit’ the text said, effectively inviting himself to their place up in northern NSW. He has holidayed there three times since they moved away from Sydney.  Do you recall the day they told you they were moving up north? You were shattered that his first friends were leaving. Yet it was a blessing as it led to his first holidays as a young man without you. 

He rang Sean, the actor with whom he now performs his show ‘Karim’s Mojo Disco’, which raises awareness of disability and inclusion. Sean does the voice over and your son is the actor. Who would have thought, in that moment in the library with the magician, that your son’s interests and strengths would result in a career?  Sean is a super cool rockstar actor and your son loves every moment of being with him and planning next steps in their business.

Oh, and who didn’t your son call? You of course. After all, he has friends to talk to!

Lesson learnt:  Be patient. Identify what matters. Plan and work towards the big goals. Take a long term view. Build a community who share your child’s interests as this will provide the environment that will bring potential new friendships. As your child grows older, these communities will also bring rich new opportunities which are more motivating than those you can plan for! 

Yours sincerely

The wiser and older Sylvana