your stories

Every parent carer has a powerful story to tell about what it's like to care for a child with additional needs. Here, some of the parents Amaze has worked with share their stories and explain how we have helped them.

She was coming in [to school] for an hour a day because that’s all they could handle, and at that point, when you’ve got a very challenging child and you’ve got them for the rest of the 23 hours, you know, you’re on your knees at that point. A lot of tears, a lot of struggles…
Gemma's story

I started to notice that my son was different. Firstly I thought he had hearing problems, as he turned the TV up full blast and didn’t answer to his name – even when chocolate was mentioned or sweets! At two he had never hit a milestone or slept through the night. He only slept three to five hours a night.

I told my health visitor and we had hearing checks done, but his hearing was fine. We went to speech and language therapy at Seaside View; we were there five minutes when the lady said that word – autism. I didn’t know anything about autism. I got referred to Amaze and started going to the Saturday autism group, but Lucas was the same as at any other group – he ran around touching everything, having meltdowns when it was busy, and trying to escape.

A year later we were told Lucas has severe autism. While he was at Jeanne Saunders, I became (after training) an Amaze face to face befriender so I could help people going through the same or similar situations.

I consider myself to be a strong person but I did break a bit in that first year, thinking life was over for not just my son but for me as a person – a wife and mother of three with two neurotypical children. How wrong was I? Belonging to Amaze feels like being part of a big family I can turn to at any time. If I’m having problems, or have questions, or need a coffee and a cry, I can go to breakfast club or I can call or message someone. We have each other at Amaze and I can’t thank them enough.

I started to notice that my son was different. Firstly I thought he had hearing problems, as he turned the TV up full blast and didn’t answer to his name – even when chocolate was mentioned or sweets!
Fiona's story (video)

When Dan was eight years old, I realized that I needed help. I just wasn’t coping – I was very depressed by the whole experience. I just couldn’t grasp the fact that we were unable to do the normal things that families do…
Colleen's story

mum hugging son tight“Things were really bad. I didn’t go out and felt really depressed. I had no help with my little boy, Finley, who was three at the time. He was delayed but we didn’t know what was wrong…. I had financial problems and problems with the council as my kitchen was falling apart but they were refusing to fix it. Lizzie helped me with the DLA forms and I wouldn’t have been able to do them without her. They’re massive and I’m not good at spelling and writing. I’ve never been good with forms.He’s coming up to 5 now and I know Amaze will help me again and we may get more help as he’s up at night. Toni also gave me a lot of emotional support as well as helping me phone up the council and get Layla into Young Carers. She really helped with my housing situation. Amaze also put me in touch with Seaside View and I have a keyworker now.

The (Moulsecoomb) coffee mornings have been amazing. If they were anywhere else there’s no way I would go. Because they are in walking distance and in Finley’s school I can get there. It’s been brilliant meeting other people. I didn’t know anybody before they started and I was really isolated. Also people visit and it’s great to get advice.

I’m much more on top of things now. Amaze has been brilliant and they’ve also put me in touch with other organisations I wouldn’t have known about. We’ve got more support and I’m less isolated.

Things were really bad. I didn’t go out and felt really depressed. I had no help with my little boy, Finley, who was three at the time. He was delayed but we didn’t know what was wrong.
Amanda's story (video)

There are so many websites – “we can do this for you, we can do that for you” – but unfortunately nobody knows you. Nobody knows your child. So as you try to relate things to your own situation, it doesn’t quite fit…
Alison's story

“We left London to escape domestic violence. Billy had a diagnosis of global developmental delay to begin with but then they said he had Asperger’s. No one had ever spoken about how the violence might have affected him… Billy had been at a speech and language unit at mainstream school in London but in Brighton they said he was high functioning, so he’d be fine in mainstream. So I picked a school nearby. Billy was there for three years: it was horrible. He was bullied. One of the other mums said, ‘Phone up Amaze’. So I did just to find out what they did. I found out loads of stuff, things I’d never have found out otherwise because no one tells you.

“Amaze helped with school meetings. As soon as you tell the school Amaze is coming, they take notice. It’s like I’ve got someone who is standing alongside me and speaking up for me. Billy was really unhappy, being excluded for days at a time and sat away from the other children. The school used to put him on the computer to keep him quiet: stop him from kicking off. Amaze got school to agree that Billy’s problems weren’t because of me and got everyone to agree to Downs Park Special School. This made all the difference.

“The first time I rang, Amaze suggested claiming DLA. I had tried before but kept getting turned down. They said I could have someone to help. I think I said ‘Really?’ Being a parent it’s hard to know what to put [on the form] and I have real problems in reading and writing. It felt OK to say the difficult stuff. They weren’t surprised at anything I said. They wrote it all down, just as I said it. If I didn’t have the support I wouldn’t have gone for it again. The minute Amaze got involved I got it. I don’t know how I’d manage without it. Billy’s quite bouncy and if I couldn’t afford good food, you know, if we had to eat cheap food, the E’s set him off.

He’s very hard on everything and the DLA helps to replace what gets broken and I can afford the internet and his special interests. We go out places and that’s really important to burn up all this extra energy. It pays for school trips. Some days Billy just can’t do buses, the extra money means we can take a taxi. I’m on benefits so I could never afford all this otherwise.

“I’ve done two Triple P courses (Positive Parenting Programmes) with Amaze. Stepping Stones when Billy was younger and, more recently, the teenager one. That’s been really helpful: how to talk to him…not shouting up the stairs. Yes, he has special needs but he’s also a teenager. PPP helped me sort out which [behaviour] is which – teenage hormones or autism. I have more strategies in my tool box, so I know if one thing doesn’t work, I can try something else.

“Billy has grown into an amazing person who is learning to embrace his autism. He fits in at Downs Park. He still has his moments but he gets up happy and wanting to go to school and he’s learning. At last I’m confident about leaving him at school: they never exclude him.

Amaze keeps families together. If you’re having a crisis you can just pick up the phone and have a chat. Amaze never say, ‘Look we’re really not here for that.’ You always feel encouraged. The message is ‘You’re doing OK, stay with it’.”

We left London to escape domestic violence. Billy had a diagnosis of global developmental delay to begin with but then they said he had Asperger’s. No one had ever spoken about how the violence might have affected him…
Debbie's story

“Zoe was two when I was told about Amaze by my health visitor who referred me because it was clear there was something wrong. She gave me the Through the Maze handbook and told me to call Amaze. I spoke to someone on the helpline and they told me to apply for DLA.

“I remember one of Lizzie’s volunteers, a red-haired woman, came to help me to fill out form. And because of that and because we’d sort of done it but just needed a second opinion, I thought – I could do that. So I volunteered to do Amaze’s DLA volunteer training course – the very first course.

“And I became one of her volunteers and because I was a nurse, she sent me out to do all medical ones.

“When my daughter Zoe’s DLA was up for renewal, when she was about 5 or 6, we were awarded high rate care and middle rate for mobility and Lizzie just said, “That’s not right”. Just because she can walk, she can’t make use of that ability because of her learning disability. She said we needed to appeal and helped us to successfully appeal at a full blown tribunal.  She prepared us for it. Wrote all the letters to the GP, panel, etc.

“If she hadn’t persisted, we’d probably not have fought for it.

“Being a DLA volunteer gave me the confidence to go on and get more involved with Amaze and then PAC. I started working for PaCC in 2009 and now because Zoe is an adult (Lizzie helped with her PIP claim), my role has expanded and I now coordinate IS across West and East Sussex…. I’m doing for others what Lizzie did for me”

Zoe was two when I was told about Amaze by my health visitor who referred me because it was clear there was something wrong…
Debby's story

“I went to a big meeting with a paediatrician, child psychologist, speech and language therapist, and the pre-school SEND service.  All but the lady from the pre-school service said they agreed my daughter was autistic but, as she wasn’t very ‘severe’, they wouldn’t support any further input from services or any requests I had for help, benefits, etc. Immediately I was speechless.

“For once I could not fight for my daughter. I felt totally powerless to help her. Visions of her being alone in school, at lunch, at play, everything we did flashed through my mind whilst her dad and I would struggle to keep life as ‘normal’ as possible.

“The meeting had been in the week leading up to Easter weekend. I called Lizzie at Amaze to let her know I couldn’t get the documents we needed for my daughters DLA claim and repeated what I’d been told.  Her sigh in reply was so powerful. She didn’t let it lie.  She made an appointment to come and see me that Friday.  It was Good Friday.  She was squeezing me into the day following going to meet with another.

“I’d never have asked Lizzie to come out in this way.  However, she gave me hope, made me feel as if I mattered, and gave me a focus for the next 2-3 days because I was feeling so powerless, lost and depressed I couldn’t even make a cup of tea without drifting off into my own thoughts.

“It struck a friendship that has led me to work with Amaze ever since.  So that others, will have the same support I got from Lizzie, support they deserve, and never have to feel alone.”

For once I could not fight for my daughter. I felt totally powerless to help her. Visions of her being alone in school, at lunch, at play, everything we did flashed through my mind whilst her dad and I would struggle to keep life as ‘normal’ as possible….

If you would like to share your story with us, email charlotte@amazesussex.org.uk

resources

Sign up to our newsletter