Bringing understanding to hidden impairments

A mum who was scared to leave the house with her three-year-old daughter has credited a local community project funded through The Health Lottery with helping them to finally “laugh and have fun together”.

Amy stayed at home for two years, missing out on family days out and meet-ups with other parents in fear of other people’s reaction to her daughter Annabelle’s additional needs. 

But since discovering volunteer-led local charity WHISH - which helps families with children with hidden impairments - Amy has found a community where she feels safe.

Hidden impairments are conditions which may not be obvious to other people, such as autism, learning difficulties, diabetes and depression.

Amy says, “Annabelle is in a special educational needs provision within her nursery and they started to use the sensory room at WHISH, which is how I became involved. 

“We were at the point where we wouldn't go out in public, or we wouldn’t go on a family day out because of how Annabelle would react in public situations. 

“People would stop inviting us to parties because of how Annabelle behaves, or what they perceive as her behaviour.

“At nursery, she doesn’t have common ground with children, it is like she ghosts them and looks straight through them, but here she knows she can be herself. If a child screams for no reason, it doesn’t matter. No one cares. She is surrounded by people who have an understanding of those with additional needs, so you never feel alone, only safe.”

Amy said the project - which sees children with hidden impairments enjoy horse riding, swimming and gardening, has been a lifeline for her after previously struggling to come to terms with her daughter’s differences.

On the day we visited, the children (and braver adults) were meeting some exotic creatures face to face. This is a regular event where the children really enjoy learning about the animals that provides a sensory opportunity, a calming influence and a great deal of fun.

Amy told us, “I was rock climbing with Annabelle this morning, which we would never have done a few months ago, and the other week I was watching her as she was laughing on the bouncy castle with other children. I just stood there in tears. These are things she has never done before and when I look at her and see her happy, it makes me happy.”

“Annabelle hasn’t hit any physical milestones since birth, and she doesn’t really have a lot of speech. She hasn't had an official diagnosis, but we think ASD [Autism Spectrum Disorder]," she added. 

“We noticed very early on that she was different, but my husband and I buried our heads in the sand. We said it was because she was a Covid baby, and it has taken us really until the last six months to accept that Annabelle is different.

“We have also had to accept the way we felt, because we did grieve for everything we thought we were going to have and the way our lives are very different to what we expected it to be before she was born.”

It wasn’t just Amy who struggled with Annabelle’s needs.

“Autism is a completely new concept to Annabelle’s grandmother, and it has been very difficult for her when providing childcare whilst while I work,” Amy admits.

“She has struggled to come to terms with it, but she came to a coffee morning and has been joining in the activities, like the puppet show and she has an understanding now.”

Since Amy has become a member of WHISH, she has also made her own group of friends and has grown in confidence as a parent.

She said, “I’ve exchanged numbers with some of the parents and we have been talking about schools for next year. It’s nice to be able to talk to parents who have that common ground and who will be looking at schools for additional needs like I will be.

“Being part of this community project has just been life-changing for me. If we didn’t have WHISH, we would still be shut up in our house not knowing what to do and not having people around us to help. We are so grateful.”

WHISH welcomes 114 families to use their services every year, and helps support children with 54 different hidden impairments, though ASD and ADHD [attention deficit hyperactivity disorder] is their biggest cohort.

It is run by a small team of people including Jo Morris, 66, a retired head teacher of a special needs girls’ college in Staffordshire, and a group of volunteers. Jo says they wouldn’t be able to function without the kindness of those who play The Health Lottery.

She says, “Everything that we do - the activities, horse riding, swimming, the electricity bills, the rent, everything comes from grants and the generosity of people who are playing to give something back. 

“Without The Health Lottery we wouldn’t be able to do the work we do, support families and give the children these fabulous opportunities they wouldn’t otherwise have.”

https://www.whishgroup.org.uk/