In My Story, readers share their unique, life-changing experiences. This week we hear from Rachael Kent, who’s 40 and based in south Yorkshire.
When my daughter was 18 months old, she was still making baby babble noises. It was like she was trying to make sense of different things, but it was just noises that came out of her mouth. She couldn’t form words.
Freya-Rose started a preschool group at two and when I saw her in that environment with other children her age, I realised she was going to need some intervention to help her with her speech.
She was referred to speech and language therapy – we did group sessions to begin with and she tried so hard. She’d get frustrated because she knew exactly what she wanted to say, but it just didn’t come out.
As she grew up, other kids would shy away from her. They’d call her the baby because of the fact she’d make sounds like ‘ba ba ba’ all of the time, even when she was trying to talk. You could see it hurt her because she’s a very expressive child. She can’t hide anything that well.
At the park, kids would go near her but the second she opened her mouth and all these strange noises came out, you’d see them look and then move away – and she’d just be stood there. That was heartbreaking to watch.
Every now and again you’d come across another child who didn’t mind or care that she couldn’t speak and they’d go on the roundabout together.
But it got to the stage where as a parent I used to think: is it really worth taking her up to that park and watching her look so disheartened because nobody wants to talk to her?
I would always say to other parents: if they see a child like that, don’t pull your kid away from them, don’t make a big issue out of it as if they’ve got something wrong with them. Get them to ask questions because that’s how they’re going to learn and how they’re going to be more accepting of kids that are a little bit different and talk in a different way.
When Freya moved to nursery, she had another speech and language assessment and they decided they were going to come in weekly to work with her.
The nursery had to do 15-minute sessions with her every day and then we did 15-minute sessions with her at home. You can’t just rely on the actual therapist coming in, like it’s going to be some sort of magic thing. As a parent you have to put that work in too, constantly helping them. It’s got to be a team effort between everybody to keep it going.
Because she was really struggling to make herself understood, we taught her Makaton and she picked the signs up really quickly. We already knew Makaton because Freya’s older brother Alex, who’s now 21, has autism, ADHD and epilepsy – and we’d used it to communicate better with him when he was younger.
We’re very lucky Freya is a really placid child, so even when she couldn’t speak we only ever had two or three incidents where she got frustrated at other children.
But the rest of the time she would keep trying to show you over and over again – and as a parent that’s really upsetting when you find out your child’s been doing that. She’d be there with tears in her eyes, welling up, because she so desperately wanted everyone to know what she was saying.
She’d go into her own little shell: most of the time she’d play alongside other children, but not actually with them because she didn’t know how to tell them what she wanted to do.
As a parent, you do hit those low points where you think: are they ever going to get that speech or is she going to have to fumble her way through life?
She’d have several accidents at school because she couldn’t tell them she needed the toilet and she’s the sort of child that will not go unless she’s told that she can go. Or she wouldn’t do her school work – and it wasn’t because she didn’t want to, but because she couldn’t get the lid off the pen. It can bring a lot of frustration. It complicates so much when you take away someone’s speech.
Freya was diagnosed with a speech sound disorder, which means she knows what she wants to say, but her brain doesn’t send the right signals for her mouth to make the movements of different sounds.
The speech and language team said about getting her into groups to try and encourage speech through social interaction. She wasn’t allowed to attend after school clubs, because they said she needed 1-2-1 support and they didn’t have the staff to facilitate it.
I’d gone to Brownies and Guides when I was younger and had adored my time with them, so I approached our local Rainbow group and explained the whole situation. They hadn’t got any experience of someone that didn’t speak, but they were willing to learn.
The first time I took her, I asked them if they wanted me to stay and they said: ‘No, let’s see how she gets on.’ I made them some visuals and gave them a crash course in the signs Freya used and we’ve never looked back.
The third week of Rainbows she came out with the biggest grin on her face. She dragged me to the door, pointed inside and she signed to me: ‘My friends.’
It was the best feeling ever. She had the odd friend outside of school but that was more because I was friends with their parents, not because they’d chosen to come and see her. She never really said ‘that’s my friend’ until she went to Rainbows. She couldn’t wait to put her uniform on each week.
Sometimes you can take children to groups and they’ll – for want of a better word – tolerate them if they’ve got any additional needs. I had that experience with her brother at a few groups we went to when he was growing up. But Freya just 100% belongs. The other girls walk in and she gets big hugs off everyone. If she’s looking unsure, someone is always there to grab her hand and take her to where she needs to be.
When Freya was about five, a speech and language specialist worked solidly with her, in addition to us and her school doing the speech and language sessions as well, and she slowly started saying two- or three-word sentences.
We kept building on that and then by the time she was six we were getting pretty much full sentences where you recognised at least 90% of the words that she was saying.
Freya-Rose is now eight and has been diagnosed with autism, a moderate intellectual disability, and PICA – in addition to her speech sound disorder.
She’s been in Brownie’s for 12 months, after finishing Rainbows, and completed all her interest badges within six months of being there. She’s absolutely flying.
She even went away for a full weekend with them and they set an entire chalet up with symbols for fridge, bedroom, etc.
She had the best time and they’ve helped her confidence grow so much – she’s gone from being that girl who would just sit and smile at everybody to someone that, when questions are asked, her hand will go up and she’ll try to answer stuff.
This week she’s narrator number five in her school nativity. I saw two of the school staff and they said: ‘Wait until you see it, make sure you’ve got tissues because we sat and cried through the entire practice when she stood up there with a microphone and said her lines.’
She’s got four pages and a couple of sentences on each page to read out. She’s not 100% clear all of the time, but compared to where she was before, it’s just amazing.
To find out more about Girlguiding and each of its four sections: Rainbows, Brownies, Guides and Rangers, visit girlguiding.org.uk.
Rachael was interviewed by Natasha Hinde and her answers were edited for length and clarity. To take part in HuffPost UK’s My Story series, email uklife@huffpost.com