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Hayley’s Story: How SENDIAS Services Helped Me and My Son

16 March 2023

Parents of children who have special educational needs or disabilities (SEND) often find that there are periods of great upheaval in their lives. Here parent Hayley explains how one of Family Action’s SENDIAS (Special Educational Needs and Disabilities Information, Advice and Support) Services helped with her child’s transition to primary school.

We were called into the headteacher’s office shortly after my son started school because he kicked and spat at his teacher. They told me he was a risk being there and had to be on a reduced timetable… and it all escalated from there.

All the time he was at that school he remained part time – I couldn’t work to earn money because I had to look after him, which caused me a lot of stress.

The way they were making him out to be… I was like “that’s not what he’s like at home”.

My son has Social, Emotional and Mental Health Needs (SEMH), meaning he can have difficulty managing his emotions and behaviour.

He’s very active – he rarely sits down – and loves anything hands-on.

For example, he likes taking things apart and putting them back together and he likes water and sand.

It doesn’t bother me to be honest as I’d rather him be up and playing than sitting on a tablet. I like seeing him out in the garden doing stuff, but at school he needs to do both – be active and sit and concentrate.

He doesn’t like listening to adults and he often found school boring and didn’t want to go.

Sometimes he’d tell me that he didn’t have any friends and, to hear that come out of a child’s mouth, well… It’s not nice.

I think partly what he didn’t like was that he was isolated at playtime as he wasn’t allowed out due to problems coming back in. The restricted timetable meant that the maximum he was there was two hours… On paper, it was two hours and would be reviewed every week. But it remained in place until he left.

I’d drop him off and then go down to town and I’d get a phone call saying he’s done this or that and you’ve got to come back. I think I developed something like a phobia along the way… like I couldn’t leave the house because I might get a call from the school.

It made me feel like I was doing something wrong; there was no light at the end of the tunnel and It felt like this was going to be my life. There was no seeing it from my point of view – I was worried he’d keep getting further behind but they were like “we’ll catch him up”.

My husband was angry because he works and wasn’t able to attend the meetings.

He had his opinions, but I would hold back from expressing them all to the school because I was the one having to face them, and he’d say, “it’s not right”.

It was hard on us all– I didn’t feel I could share everything because I’d upset him so I was bottling everything up.

I’d sit and cry on my own because I didn’t feel I could share it.

The school would set goals for my son and say “you have to do this” and he would do it, and then they would change the requirements.

They were changing the goalposts constantly and if it wasn’t for my son’s pre-school passing me the details for the SENDIAS service I wouldn’t have gotten through those first few months.

“If it wasn’t for my son’s pre-school passing me the details for the SENDIAS service I wouldn’t have gotten through those first few months.”

I could call my contact there and rant and she’d give me little ideas to try and put me in the right mood.

It was just nice. I’d always be apologising because I needed to vent but it was nice to be able to say something and know that it was safe, and they would keep it confidential.

She helped put me in touch with Early Help and then we began looking for an alternative school… and started the process for an Education, Health and Care Plan (EHCP), which states the support you’re entitled to.

We told the Local Authority in the meetings around the EHCP that we wanted him to continue in mainstream school but that we would look into specialist schools.

They said “you need to be realistic”.

It was frustrating as his current school said there wasn’t any evidence to support an EHCP and what they were writing in the drafts for the plan wasn’t representative… They said he needed ear defenders and wasn’t affectionate, which isn’t true.

In fact, when we were doing our research one of the specialist schools met him and they said “this doesn’t match the child in front of me”.

We visited one mainstream school that was my first choice, hands down, but because of how popular it is we couldn’t get a space.

Meanwhile, we were still three drafts in on the EHCP.

Our SENDIASS contact came around and spent HOURS with us doing paperwork – she deserves a raise! – and we got the EHCP finalised.

We went back to the mainstream school I liked and found they were putting in place some additional provision for a small number of children with additional needs, and my son ticked every box, but the spaces were already filled, and I would need to approach the Local Authority to see if they could help get him in.

It seemed amazing as it would give him the best of both worlds – specialist support in a mainstream school.

I just thought “I want it”, and approached the Local Authority, but I heard nothing back…and I heard nothing back… so I contacted my SENDIAS contact, who supported us by communicating with the local authority on our behalf.

Then one day I got an email from the school saying he’d got in! I was crying and texting everyone I knew.

The first day at the new provision he did the two hours he’d been doing forever; the second week he did five hours and he’s been full-time ever since.
He loves it as they can do fun stuff and be active… it’s not JUST sitting down and writing.

On his second week he told me he’d had hot chocolate with the headteacher for doing his best and I was crying again because I didn’t think it would ever happen.

I feel like I’ve been crying forever through either sadness or joy… I don’t think I’ve got any tears left!

“The best thing I ever did was contact SENDIASS.”

The best thing I ever did was contact SENDIASS.

The school was talking at us in acronyms, and the service explained everything to me: what they were and what they meant.

My contact made me feel like I had a voice and I would 100 per cent recommend the service, even if you’re scared to do it.

They helped me understand that I knew my son, to not roll over and to do what’s best for him

Read our Response to the Government’s SEND and Alternative Provision Improvement Plan and find out more about our vision of support for families of children with special educational needs.