The Change in Social Circles While Parenting a Child With a Disability

Before my son was diagnosed with a rare genetic syndrome that ultimately meant he would have a learning disability for life, we were told that he may need surgery. In very close succession we learned everything we could about craniosynostosis and hydrocephalus and braced ourselves and our friends for a possible, imminent operation. Friends from near and far rallied round and we were inundated with offers of help during this difficult time. Further investigation established that surgery was not needed and my son became undiagnosed, he was a SWAN (syndrome without a name). We then entered the unknown territory of appointments, numerous blood samples and waiting. As we crossed off possible causes and syndromes, the initial offers of help and support started to diminish.

When my son was finally diagnosed with ADNP we celebrated the diagnosis, reached out to our new community of children with the same rare syndrome and settled into our new life with our rare bear. Again the circle became smaller, people outside of the SEN community struggled to find the words to say and some even had a hard time with how to interact with a child with a learning disability.

Those initial offers of help were no longer available to us and they seemed to be founded on the want for our son to get better. A lot of offers of help are like that — people want actions that will solve problems and bring everything back to the status quo. But life with a learning disability doesn’t go away and for some people that makes them uncomfortable, and is probably not something that they want to think about. My son is not someone who is facing a temporary battle, where people can feel good about themselves by donating to his cause. My son continuously needs people around him who will challenge their own ableist views. People who will alter their behavior and mindset to help their interactions with him. People who are invested in helping another person become integrated into society. That is a lot of work, way more work than just clicking on your PayPal account. And so the circle gets smaller and smaller until you are left with a handful of people. Initially that used to make me confused, then upset and now I am slowly moving into a level of acceptance, peppered with a healthy dose of “you’d be bloody lucky to get to know my child!”

Those people who are now in our inner circle are incredible. They are invested, truly invested in my child. They put the effort in to get to know him and are rewarded with such an intense reciprocal love that other relationships seem trivial in comparison. Those people are golden and my life line.

So while that circle has got smaller, it is most definitely, 100 percent, full of the best of the best.

Thank you, you lovely lot!