Five things you don't know about parenting a child with additional needs - from a mum who does

Vicky Lewis and daughter Amelie
Credit: Vicky Lewis.
Vicky Lewis with her daughter Amelie. Credit: Vicky Lewis.

Exclusive figures obtained by ITV News Anglia have revealed that hundreds of vulnerable children have been left without a school place.

Councils in the East of the Anglia region responded to our freedom of information request - and told us that, as of August the second, 964 children with Education, Health and Care plans - which legally entitles a child to specialist provision - were out of school.

More than three quarters of these are home schooled, either by choice, or because it's the only option left.

We spoke to Vicky Lewis, who described what it is like looking after a child with additional needs.

It is a battle to get your child any support

When your child needs additional support, it can feel like a lonely and bewildering place tobe. It feels like the world is against you, rather than walking alongside you to offer support.

There are systems in place to support children, but they are massively failing.

For us the battle started when school professionals didn’t acknowledge or understand our daughters needs so we felt forced to deregister her from school. We turned to NHS services, but they are so overwhelmed, and many said they wouldn’t help my daughter as they ‘support neurodiversity’ so accept she will struggle.

I was told applying for an EHCP (Educational, Health and Care Plan) would offer my daughter support but even with one it has currently given her nothing, apart from a stressed and broken mother! I have sent hundreds of emails to my local authority, written many poems of complaint, spent hours trying to make sense of the process, watched webinars, researched SEN legal processes, submitted appeals to take the local authority to tribunal.

There is no accountability in the system and the desperate change that’s needed is not on the political agenda, so children like my daughter continue to go without support and be failed.

Credit: Vicky Lewis

It can feel very isolating

The isolation is tough, and it’s been one of the hardest parts for me. It’s hard to parent andexist in a world when people around you do not understand your child and the way youneed to parent to meet their needs.

Especially so when your child needs you to parent in a way that goes against traditional parenting methods. It sometimes feels like family and friends avoid contact with us, or rather we avoid contact with them as explaining and justifying our daughter's needs and behaviours all the time is exhausting.

Sometimes people stare at your child or avoid you in the street when your child’s having a meltdown. Social isolation is there when your child never gets invited to birthday parties.

When ‘back to school’ causes such stress for your child but you see friends' children happily skipping off to school.

Despite this isolation it is amazing to see my daughter grow and develop in differentsituations. She started animal therapy recently and to see the smile on her face whilefeeding the animals was magical.

I have gained so much support through online communities. To find like-mindedpeople who understand your daily struggles and do not judge is so validating - for someone to just listen and accept that this journey is hard, to tell you you’re doing a great job!

Amelie with her younger sister Alba, smiling through the rain. Credit: Vicky Lewis

You often feel judged and doubt your own judgements

Parents are the experts on their own children and that expertise is often undervalued.

I had to become the expert on my daughter's needs as I was desperate to help her. Doubts often creep into your mind though that you’re not doing things ‘right’!

In our case, it feels especially hard trying to navigate parenting a neurodiverse child in a world which is set up for neurotypical people.

I’d often be given advice from well-meaning professionals, friends, and family but often they don’t understand the realities. My daughter has certain ‘safe foods’ that she will eat so if we go out for a meal then she will take her own food, but it’s often frowned upon.

Some nights my daughter will take over two hours to fall asleep as her mind and anxieties don’t allow her to switch off. She’s currently sleeping on a mattress on my bedroom floor as it makes her feel safe to be near me, but professionals deem this inappropriate.

We both sleep so despite feeling judged, I know my judgement is right for us.

Finding time for yourself is a daily struggle

As my daughter’s full-time carer, finding time for myself is non-existent and I’m exhausted.

I'm mentally exhausted by fighting the world to accept and support my daughter and ourfamily, and I'm physically exhausted by the lack of sleep as she struggles to fall asleep and stay asleep.

The admin you have when you have a child with additional needs seems never-ending, especially related to the EHCP process. I often spend my evenings searching forsupport, arranging therapy appointments, emailing the local authority again and again, completing forms to try and get some support.

I often can’t go out and have time away as my daughter has severe separation anxiety and there’s only a few people who she’s happy to be left with.

Despite the difficulties I've described, there are moments of joy in the daily struggles.

When my daughter was happy today to leave the house and go shopping after refusing for days due to her anxieties, or when my daughter masters new skills and thanks me for helping her. The small steps feel like big victories.

The squeals of joy when she managed to ride her bike, made us all smile. The small steps feel like big victories and make us forget the struggles.

You are made to feel like your child is wrong

When you have a child with special educational needs often too much emphasis is placed on what a child can’t do, rather than their strengths.

My child is precisely the person she is meant to be. She is perfectly herself, but society mars that ideal.

When my child struggled to attend school, I was made to feel like she and I were the problem and was told to dismiss her feelings and ‘just make her go.’ If a child struggles in an environment, then the focus is often on fixing the child, rather the environment.

When my daughter wears her ear defenders when we’re out and about because it’s too noisy and overwhelming, people stare and ask me what is wrong with her.

You often have to deal with prejudice and discrimination. I was made to feel like my child was of less worth when a local councillor referred to children without SEN as normal and stated children with SEN pull funding away from "regular" children.

No one is "normal". We are all unique and everyone’s differences, regardless of their individual needs should be celebrated.

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know