I sat alone in a side room in the children’s hospital waiting on my son returning from his 16th general anaesthetic. In the silence of the room watching out the window to the busy street beneath I wondered if anyone knew I even existed. Did anyone care?
The loneliness was overwhelming.
I stood at the school gate quietly, all the other parents keeping their distance. Party invites being distributed, lots of chatter and excitement, but I wasn’t being included. I’m the parent of ‘that’ child. The one who is different, the one who plays alone and struggles to communicate. The child who doesn’t get the games others are playing and won’t join in with everyone else.
The loneliness is emotional.
Back home everything is in full swing, as one child comes home screaming, throwing and destroying. Things get smashed, children screaming, dinner gets forgotten and burnt yet again. I feel helpless as I wasn’t with him all day so I couldn’t prevent any of it. I sent him and now he hates me. Behind closed doors no-one sees the pain from the weight of the heavy burden.
The loneliness is exhausting.
The fighting for services. To get someone, anyone, to listen. Find my child the help he needs. Or to push our way up never-ending waiting lists. The struggle to find hope, to support my child in any way possible. The constant phone calls, appointments, all the talking. Repeating the same thing to so many people just trying to get someone to help.
The loneliness is overwhelming.
But it can be broken. The loneliness can ease. While no-one was physically in that hospital room with me or standing beside me in the school playground. Or helping me holding my child with me as he struggled after holding it together all day at school or attending the meetings and appointments that fill my every week. They were with me in other ways. They understood.
I used to feel lonely because I thought I was the only one going through this journey. Yet just along the road, in the next town, in the nearest city, out in the country and in the same school there were other parents whose child is different too. Other parents who know what it’s like to have a child who explodes after school. Or who doesn’t get that party invite and who are also fighting to get services and professional support. I didn’t know they existed because I let loneliness consume me.
You are not alone.
Yes, it is lonely raising a child with additional needs and some struggles may be unique to my family But, that doesn’t mean others can’t understand and support. It’s about finding your posse, your gang, your support network who can walk beside you and cheer you on, whether that be in person or online. It’s about Googling support groups in your area, searching for social media groups relating to your child’s condition, or even just groups for carers. They are everywhere and when you find one where you feel at home it will be life changing.
I can’t promise that you won’t feel lonely at times, but what I can promise is that others will be there and understand. A message, a text, or even just a funny meme sent in love might be all it takes to remind you that as hard as this is you really aren’t alone.
When you feel lonely as an additional needs parent always remember that others do understand. We care and we are cheering you on right beside you.