When nobody understands you and your child, when you’re made to feel like a bad parent by the people who are supposed to ‘get it’, it affects your mental health.
By Blessing Kingsley
As a parent to a special needs child, nothing affects my mental health more than the constant fights for my daughter’s basic human rights to be met.
My daughter, Mercy’s diagnosis of Cerebral Palsy, and her high level of care and special needs, require me to be calm, patient, alert, positive and happy at all times. 24/7.
To get through some of our hardest days, I have to focus on the positives, no matter how small they are, or hard to find.
Yet I also have to explain, in great detail, everything that Mercy can’t yet do, everything she struggles with, and how her diagnosis affects her daily, to her doctors and the relevant professionals.
I’m questioned constantly, I’m judged unfairly, and I’m made to feel like I’m asking too much, by the very people who are supposed to be helping families like mine.
Every battle for services, support, and equipment leaves me feeling anxious, defensive, defeated and broken.
Explaining Mercy’s needs is draining, especially when you start explaining to bus drivers and conductors how important her wheelchair is to her if they don’t want to carry us with the chair.
I fight to protect my daughter’s safety.
I don’t want Mercy to have to be supervised constantly and restrained for her safety, I don’t want her to have to rely on a wheelchair, an enclosed safe bed, specialist chairs, specialist car seats and restraints.
I don’t want Mercy to wear diapers, to be restricted by stair gates, stable doors, and locks.
I don’t want Mercy to have a caregiver who isn’t me, because sometimes I need a break from the constant caring myself. I don’t want Mercy to have to communicate with pictures or signs.
I don’t want any of it, she didn’t ask for any of it. BUT SHE NEEDS IT.
Everything I fight for, is what my child needs to live a happy, healthy and safe life.
When nobody understands you and your child, when you’re made to feel like a bad parent by the people who are supposed to ‘get it’, it affects your mental health.
Special needs parents are the strongest people I know, even though we might not feel like it at times.
We never give up. We have no choice but to be strong on the outside, when inside we’re feeling broken. We focus on our child’s positives daily, whilst also explaining all of the negatives.
Our emotions are constantly conflicting.
The love we have for our children makes us strong, it’s the reason we keep going and fighting each day, even when we’re barely surviving.
But it shouldn’t be this hard.
Our children are vulnerable.
We shouldn’t have to lose ourselves whilst fighting for our children’s basic human rights to be met.
• Blessing Kingsley is a mother of a child living with disability and an advocate for the rights of children with special needs.