When People Don’t Believe You as a Special Needs Parent
It’s easy for people to say ‘Mum (or Dad) know best’ but sadly in reality when it comes to parenting a child or children with extra needs the sad fact is that parental opinion is far too often ignored, belittled and even worse made out to be lies!
When my twins were born my daughter struggled to feed. I was told it was the way I was holding her, my milk wasn’t enough, I wasn’t winding her enough, I wasn’t getting her to latch properly and so on. Despite the fact her twin brother was feeding great and gaining weight it was somehow all my fault. It turned out my daughter had horrendous colic which required medication to help but that was my first experience as a parent to a struggling child of feeling I wasn’t believed.
Not being believed left me feeling like I was a failure and that the issue was all my fault, which wasn’t the case at all.
Months later I happened to mention to a health visitor that I had some concerns about my son. He wasn’t giving any eye contact, he wasn’t reaching out for toys like his sister and he wasn’t babbling or attempting to make any sounds. Initially, I was made out to be paranoid and told to stop comparing my twins and that ‘boys are always a bit behind so don’t worry.’ 13 years later and my son has since been diagnosed with three separate eye conditions, he’s still non-verbal and he has global developmental delay and learning disabilities.
Not being believed meant vital referrals were not made until later and support was then delayed.
At 3 my son was diagnosed autistic and by 4 he was in full-time special needs school. His diary would consistently say he had a ‘good day’ and feedback was positive yet at home, he had horrendous meltdowns, was difficult to manage and sleep was erratic. I would often mention this to school wondering if there was perhaps anything distressing him or any changes he was perhaps struggling with. Rather than the support I was met with a wall of ‘it’s not what we see’ or the classic, ‘it must be home that’s the issue.’ I was made to feel like I was exaggerating, lying or simply unable to handle my own child.
Not being believed affected my mental health making me feel worthless and doubting my own abilities as a parent.
Unlike her non-verbal twin, my daughter had clear speech and a large vocabulary. She would sing, question, describe and share so much at home yet I soon found out from nursery and school that while she was there she was withdrawn, anxious, and silent. Before she started school she was diagnosed with selective mutism which I soon discovered was very misunderstood. As a result of being unable to read to her teacher, my daughter would be given the same reading book at home for weeks even though she fluently read it easily at home. I would gently mention this to school but I was initially seen as being pushy, demanding and seen as someone who thought themselves above the teacher.
Not being believed resulted in my child being held back academically and not meeting her true potential.
Like many parents, I am not always comfortable speaking up. I avoid confrontation and have huge respect for teachers, doctors, therapists and paediatricians. I don’t like being a ‘problem’ or questioning too much, but when it comes to my children I do feel I know them more than anyone. When I do find the courage to ask for help or speak up about something it’s because I feel this is necessary and not because I just want to get attention or be difficult or whatever else.
I know there will always be a small minority of parents who are over-anxious or exaggerate something for attention or have issues of their own but by far the majority of parents and carers are asking for support and mentioning issues because they know their child needs help and they are trying to support them better.
What we need is people to genuinely listen to us, believe us, and support us without judgement or condemnation. Believing and working with us empowers us to be the best parents we can be, helps the child reach their potential and ensures services are in place as quickly as possible to pick up and rectify issues as they arise.
It’s easy to say ‘parents know best’ but sadly too many special needs parents like me have long felt ignored, unheard and made out to even be liars because no one believed us when we mentioned issues. Imagine how life-changing it would be if only every special needs parent was heard and believed.