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The Loneliness and Isolation of Special Needs Parenting

The Loneliness and Isolation of Special Needs Parenting

I’m in another hospital waiting room with my son watching him in the small children’s area as we wait for his name to be called.

No-one speaks to anyone else.

The silence is only broken by the odd cough or child’s cry.

I am pretty sure I am not the only lonely parent there. But no-one even gives eye contact let alone says hello.

My child gets transported to school.

I don’t know the names of the other children in his class even though there’s only 8 of them, neither would I recognise his support assistants if they passed me in the street.

Going to anything in the school is not only physically difficult due to the distance it’s also highly distressing and confusing for my son if he sees me in the school environment.

There is no contact with other parents, no community I can join, not even a Facebook group.

When I collect my son for appointments he’s escorted to the office to meet me with little more than a ‘see you tomorrow Isaac’.

Communication is by short basic sentences in a diary. Sometimes there is no communication at all even though my son is non verbal.

It’s a very lonely and isolating place to be as a parent.

I took my son to his favourite soft play. While other parents pulled tables together I sat alone watching others look quizzically while my ten year old flapped in the ball pool, alone but happy.

My son has no friends we could meet up with.

Outside of school he goes nowhere because he can’t cope with changes to his rigid routine and because we need to be home for food and medication at set times.

In school holidays I can go weeks without seeing another adult or having adult conversation.

That’s incredibly isolating and lonely.

I walked round the supermarket the other day with my son with me. He refused to use the Firefly GoTo Shop trolley, which was fine as I couldn’t find it anyway.

I’m pretty sure there where people in that shop who knew me but actively avoided me.

One person once tried to say hello in the supermarket while I had my son with me but his high pitches screaming and agitation meant the conversation never got beyond the ‘hi, good to see you’ part.

I so wanted to have a longer catch up!

I longed to hear how their family was doing and listen to their news.

It just isn’t possible unless I don’t have my child with me, and then others are at work or busy.

I left the shop feeling more isolated and lonelier than ever.

My child never goes out to play with other children. He’ll never be part of a football team or a chess club.

He’s never even had a play date. Even family need amazon wish lists because they never see him to know what he likes.

People don’t pop by to visit and they definitely don’t phone.

It can feel like I am invisible sometimes.

When my child wasn’t meeting milestones, when he started developing medical issues, I knew life would be a bit harder.

I expected the myriad of appointments and meetings. I got used to the form filling and fighting for his rights.

I am immune now to the stares and the tuts.

But years into this special needs parenting life and I still struggle with the absolute isolation and loneliness of it all.

That for me has to be the hardest of being a mum to a child like mine.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Miriam Gwynne

Meet Our Blogger

I am 41 and from Scotland. I have nine year old twins who both have complex needs and a husband who has autism, depression and nf1. I read, write, help out in my daughter’s school and have a strong faith. I laugh, cry and over share!

View Miriam’s Profile

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