The day James got an invite to a party.
“Party!” James ecstatically yelled this word out as he ran towards me at the end of a school day waving a white envelope. He was thrilled, I don’t think he really knew what a party was but he knew it was something that other children got excited about and now he could join in and be just like them.
In that moment sat a mix of emotions within me; there was a happy feeling for him and that made me happy. His smile was and still is contagious and because of that so was mine.
There was gratitude in me because someone had included him in their celebrations and fun and these experiences were rare for James; he never got invited to his school friends party’s.
It was hard for James I was beginning to really acknowledge that mainstream primary school for him was indirectly excluding him from opportunities for him to connect, socially learn and evolve and he was missing out. Watching these social exclusions through his primary school experience was crushing.
I also felt anxious. I felt anxious about what I was supposed to buy the birthday girl, I felt anxious about how he would manage and if he became activated; would they understand his behaviour or would he be singled out and excluded amongst it all?
Could he join in the games? Would they be accessible for him? Will they have thought of this as no one has asked me about him? Do I have the right to go over and talk about this? Why do I feel nervous about that?
This is one of those small print anxieties amongst a million when it comes to parenting a child with additional needs, when you are so used to making daily life accessible but accessibility isn’t on everyone else’s radar and you have to address it and hope the response isn’t like you’ve caused an inconvenience. The day James got an invite to a party was the day I celebrated and also felt really anxious and protective of him.
When I was at school; party invites were the indicators of popularity and I was never one for wanting to be popular; but as an adult I would really feel it seeing James overlooked and when my second child Lennon came along; that was a whole different experience of inclusion which didn’t go unnoticed for James.
Our children with additional needs go through so much as they are passed between assessments, medical interventions, navigating daily living and all the sensory processing. For me the social exclusion is one of the hardest experiences for them and for us as parents to witness and manage. I know for James his regular appointments all became normalised for him, this made me a little sad but helped me realise that a lot of the burden and frustration and anxiety around his life was n fact held by me.
This I guess is typical of many parent carers; we are the buffer for all they experience and we feel the feelings deep.
There are so many emotional obstacles to navigate as a parent and talking to my partner last night we reflected on some of the areas of isolation we felt which as it turns out; comes to a lot of areas.
When my partner brought up her own experiences with party exclusions, it really reminded me of that awkwardness I experienced and realised that yes, it must really be a thing for so many of us.
When James went to special needs high school he received his first birthday party invitation within the first couple of months and that right there was a precious moment.
On the invite form was information around accessibility and the invite to have a conversation about James’s needs and a permission slip to drop him off and enjoy a couple of hours to myself if I felt okay to do that. I mean… imagine that!
The day James got an invite to a party was a day I will always remember because he’d genuinely earned that invite for being his most magical self.
The child with additional needs, the non-verbal child, the neuro-diverse child, the child with ASD, the child with global developmental delay, the child navigating life with a wheelchair or frame, the child who has been adopted, the child with dietary needs, the child who’s story or lived experience you aren’t aware of; that child wants to be included too.
As a parent I understand costings, I understand financial restraints and how expensive parties can be but even if there’s a little party in the park with a cake and a run around; those are invites they’d love too and so would we.
So yes the day James got an invite to a party is a day I will never forget and just to say; he had the most amazing time and loved every second.