It was just horrific. It was heartbreaking. It was the worst. I’ve got three children and you are supposed to be hitting milestones and enjoying their childhood. I hate thinking about Harvey’s childhood from the last two years. It’s just too much for everybody.
I absolutely am in favour of the government scrapping what they’re doing now because it isn’t working. However, I am concerned. What we’re trying to do is break down the barriers so that our children with complex needs or disabled children have the same resources and opportunities as any other typical child. And I just think that the chances are they’re not going to break down these barriers. They’re probably going to create more of them.
What will they have in place to ensure that the local authorities will implement these laws? Because by law, our EHCP plan should have been completed in 20 weeks. It was 18 months and there were no repercussions. There was no: ‘Your local authority broke the law’. They broke the law in many areas. We ended up taking it to a legal team and the local authority had to give us a financial payout and apology, but everything was just far too late.
His EHCP was completed in February 2025 with Harvey due school to start school in September. But the council didn’t allocate or release any funding to the mainstream, so the only thing we could do was wait. He couldn’t start this provision until he turned five – the age that children start school – when they started to release the funding.
He started at the specialist provision in September and he’s like a different child. A few months before he started school, we needed help just to get Harvey out of the front door. He was that anxious. He stopped sleeping. He wouldn’t dare leave the front door because he thought he was going to nursery.
He was actually referred to the sleep clinic throughout these months because he was so anxious. He wouldn’t sleep. He was just sad. He was really sad all the time and he stopped eating. He’s sleeping right through the night now.
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But now, having only started in September, he stands at the door waiting for the car that picks him up. We had to fight for some transport, but we won that one. He has an hour-and-a-half journey there and an hour-and-a-half journey back, sometimes two hours. For any other child, that would probably be a lot, but I think Harvey knows that he’s going to a safe place.
There are only five children in his class. He’s got a one-to-one intervener, so he’s not falling over. He’s a cane user. He’s got a mobility and habilitation specialist. He’s learning braille. He’s learning hand-under-hand sign language. So he now stands at the window and runs out the door when he sees the car. He’s just not fazed.
His diet is expanding. It’s definitely because we’ve now got this support in place. But like I said, these effects that he had throughout the years are probably going to affect him for a long, long time – if not forever.
My two boys often couldn’t attend their clubs or friends’ houses when I was by myself because I couldn’t get Harvey. We’re talking about a four-year-old little strong boy. He would take chunks out of his own arm. He’s never done that in any other situation. He’s not that type of child who releases frustration through hurting himself or being sick. He’d just never done it. It affected the whole family. I think my worry is now with these changes to the SEND system, we can’t go back there.
And if the changes became unbearable for us, I’d have to look into some sort of home education and give up my job again, because there wouldn’t be any other option. I don’t think he would manage any more distress without it severely affecting his mental health.
I’m hoping the specialist school will fight their corner if the government cuts back funding. It’s a school for the deaf. There are no schools for Harvey for everything he needs, so they bring it in for him. We have to get a specialist teacher to teach him braille. He needs a rehabilitation specialist to learn to walk outside with his cane. If they start cutting back on funding, he wouldn’t cope. He needs a specialist teacher who knows braille so that he’ll be able to read, and he needs somebody to teach him to be safe on the road.
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I was warned that it’s going to be a big fight. It just makes me feel really sad and heartbroken. It’s not how it’s supposed to be. These people that are supposed to help protect our children in society are actually letting them down and are actually failing them. We’re a tax-paying family, we’ve worked all our lives, as have our families before us. We’ve put everything into the system, and I’ve never asked for anything back. When I needed support from the system and the local authority and this country, it completely failed us.
We need to stop tarring every child with the same brush. My child who is in need of deafblind support doesn’t need the same support or resources as an autistic child who is immobile. What we’re doing is that we’re all having to do the same process at the start and all our application forms are going into one big basket, and not being picked out based on the needs at that point.
It put me and probably some of my family actually in quite a dark place for quite a long time. It was so much pressure. I didn’t sleep knowing that I’m the only person that’s going to be able to fight in his corner, and I don’t know anything about any of this. I didn’t even know what an EHCP stood for at one point because I had never had to acknowledge it.
My mental health was not great at all. When nobody’s listening, nobody’s helping. And you know that the first few years of your child’s life is the most important. Harvey’s still recovering from the trauma.
He has big dreams and ambitions and I need him to be able to access them in the same way as any other child. Whatever barriers are in the way that shouldn’t be there because he should be able to fulfil his dreams. My dream would be that he wouldn’t ever feel that he couldn’t do something based on his disability. He shouldn’t feel that way, not in this country.
Kimberly and Harvey received support from charity Sense. Find out how to get support here.
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Response from the Department for Education
Responding to the Big Issue’s series around the SEND system, a Department for Education spokesperson said: ”These heartbreaking cases show why it’s so crucial we strengthen support for children with SEND and ensure families get help earlier and closer to home.
”We know too many parents are forced to fight for support, with rising demand meaning children’s needs can escalate to crisis point before help arrives. That is not good enough – and our reforms will mean more support for children, not less.
“Our reforms are designed to strengthen support for children and ensure help is delivered earlier and more consistently. We have already committed to unprecedented long-term investment, including £200 million to train teachers in SEND and at least £3 billion to create 50,000 new specialist places, and there will always be a legal right to additional support for children with SEND.”
Despite these reassurances, there remain fears that SEND support will be reduced rather than enhanced.
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