Does this class as disability discrimination at nursery

[Ayekat9]

Hi,

My son has epilepsy, he was diagnosed at 6 months. For months following his diagnosis, life was extremely difficult, he would have 3-4 tonic clonic seizures a day and he would just be exhausted, irritable and just generally always unwell. It was so hard as a mother to experience and I can't even imagine how he felt at such a young age. I'm tearing up just remembering.
Thankfully, his epilepsy is under control with medication, although he still has bad days occasionally with a few seconds absences and poor sleep at night, he's happy and thriving and I'm hoping he no longer remembers the pain of those seizures.

He recently started in nursery, he gets 15 funded hours through his DLA and my husband and I top up for the additional hours. He loves nursery. He's come on leaps and bounds with his speech and I've noticed a real difference in his mood. He always talks about his friends and is practically running to the door waiting to go.

However, almost every week I get a phone call asking me to come and collect him because he is 'dazed' or his lips are trembling, or he is being clingy to his key person.
Personally, as his mother, I have never noticed his lips trembling, this was not a warning sign of a seizure I have witnessed. He did not have a warning sign or 'Aura' that family or doctors are aware of.
Also, I think being dazed or clingy can be normal toddler behaviour. I know he has absences for a few seconds, but he doesn't need help after these and continues what he is doing. You wouldn't even notice if you didn't know he has epilepsy.

I go and collect him and he is always happy and playing and he cries that he wants to stay. Everytime I get him home, he is completely fine and doesn't show any signs of being unwell. I'm not saying they are lying by the way.

I recently challenged this and said he might just be a little tired (they have beds that he can sleep on, but they never put him in bed) and that it's probably nothing to worry about. They said because of his epilepsy they don't feel comfortable.

I feel like this is something they should have told me before he joined because now he is losing his funded hours and I am still paying for the hours he is missing.
They have also received training from epilepsy nurses that look after him, and have contact details of his consultants secretary.

It's really starting to feel like discrimination, that because my child has a medical condition he is being excluded from being able to attend nursery. I honestly regret arranging the training and giving them the details of his condition.

Am I overreacting? I think he's missed over 10 sessions now.

You need to meet with nursery manager and agree a medical plan which states what you both agree will be followed. Include nurses if required. If they are then not following it and sending him home then you can go back and complain

Thanks @Dontsparethehorses I think that's a good idea. We did have one in place when he joined that if he had a seizure I would be called. I've already told them he has medication that controls the seizures and his consultant is happy with his progress and for him to be in nursery.
But I think I will ask for a meeting tomorrow to go over any concerns they have.

This.. there should have been a plan in place from day 1!

@Mammyloveswine there is a plan, I had a meeting with them before he started to talk about his journey and that he doesn't have an apparent trigger etc. The plan was if he had a seizure they would call me. I was understanding at first when they would call me for things as they were getting to know him and epilepsy is scary. But it's practically every week now.
Epilepsy nurses have also provided training and his rescue plan that we hopefully never have to use.

Then you need to ask for a formal meeting with you, manager, room leaflet and epilepsy nurses.

@Mammyloveswine I agree, I will ask for this first thing tomorrow morning.

How recently has he started? It may take staff many months to get used to his diagnosis and needs and feel confident managing him. They obviously have to be extremely cautious and can’t take any risks at all with him.

Leader not leaflet. Good luck! Advocate for your child but also reassure staff!

Speak to the epilepsy charity maybe? This has definitely happened to other people I know and it is probably going to help to get advice from people who have experience

Can you get the epilepsy nurse to go in and talk to them? Sounds like they are panicking because they don't know what to do.

It sounds like a confidence issue. Having responsibility for a child who has medical issues is scary, especially when they're not actually yours. They will be overreacting because they're scared of getting it wrong. They will want to know that you have confidence in them and that you're not going to go straight to Ofsted if they get something wrong.

Are you a SAHM? If so, just go along when they call you and see how he is and if he's fine just leave him there. That might stop them calling you.

It is slightly unnerving when children do have an absence seizure and it does take a bit of getting used to. We had a brownie at my pack who did (fairly) regularly - probably one meeting in 3, but they only lasted a minute or so. We always had someone who was "eyes on" if it was a risky activity - like hammering or lighting a fire/match or even playing a physical game. But one of the leaders wasn't keen to lead a meeting if I wasn't there without her mum coming.

So you can sympathise with them at the same time as helping them to deal with your DS's condition and no, they cannot claim the funding time for him if he's not there.

Its hard to gain confidence in them when they keep asking me to pick him up at the slightest thing. When I went on Thursday to pick him up because apparently he kept saying quietly that he didnt want to play outside, and when I got there he was completely fine, (even they said he was only quiet for 10 minutes and was back to his normal self) I said can't he stay? They said they are too worried because of his epilepsy. Saying no is not a symptom of epilepsy.

I do work, and that's why we have put him in nursery, I was reluctant at first and used to work from home with him with a arrangement with work, but after his big seizures stopped for a few months, we thought it was best for him to go to nursery and I start to attend the office.

His absences literally last seconds, the doctors aren't even 100% convinced they are epileptic seizures and could just be daydreaming as its never been caught on the EEG.

I was understanding at first, but now, it's hard to explain, but it feels like they are just blaming every little thing on his epilepsy.

In regards to the hours, I've been told that because it's short notice they still charge me or use the hours (depending on the day which usually falls on the days I pay for) because they already have the staff in to cover the shift. Should I ask them about this?

I can understand their approach.
If they are noticing something new of course they are going to seek parent collection so he has expert eyes on him. I think a dazed toddler who has epilepsy is a concern to non experts such as parents etc.

In an ideal world a medically trained support would be available to support the nursery team gaining confidence for a considerable period of time.

To me they are prioritising your child's medical needs.