Residential School + Autism and Epilepsy

[Stuckinthemudandcantgetoutofit]

Hello everyone,

I have been a Mumsnetter for a long while but have been off the forum for a couple of years.

I have been undergoing severe stress due to my son’s changing needs. My son, 16, has Autism and there are limited options in our borough. No local school can meet his needs. We are considering St Catherine’s Isle of Wight and he will have to board there. It breaks my heart to think about it. But I do think it can meet his needs.

My concern is that my son has recently developed Epilepsy :(. He has just started on medication. But the diagnosis threw me. I’m worried about SUDEP. I am worried about medication side effects. I am worried about everything. Due to this, he is on the vitamins, and I’m keeping an eye on his diet (low carb).

I am now worried to send him off to residential because of all of the above. Particularly as he just started on medication and I need to watch out for reactions. I was wondering if anyone has sent their children, with chronic illnesses, off to residential- especially those with Epilepsy. My initial reaction was keep him at home, see how his epilepsy pans out? But again, this may not be realistic? My biggest fear is that something happens to him and I’m not there :( or worse? Especially around night time.

I am also not sure if the residential school will be up for managing my son‘a diet and making sure he takes his vitamins.

if anyone has any insights, in particular with the specific school and having a child with a chronic illnesses off to residential, please let me know.

I don’t have personal experience of St Catherine’s, however DC with medical needs and dietary requirements can successfully attend residential SS. You would need the EHCP to be strong, including provision for training, and you would also need a good IHCP/IHP.

One thing to consider with the IoW is that if DS needed certain types of medical treatment he would need to come back to the mainland.

@ChasingMoreSleep

Thank you for your response.

Regarding your quote “One thing to consider with the IoW is that if DS needed certain types of medical treatment he would need to come back to the mainland”. What do you mean by this?

Some medical treatment isn’t provided on the IoW itself. Some people have to come back to the mainland e.g. Southampton hospital for certain treatment/care. Some find it less of a problem at 16 compared to if younger, but I still think it is something you might want to consider.

Ohno! But what happens if the person needs oxygen or is in a coma?

They still receive care. It is just that some receive care whilst also being transferred.

Oxygen alone wouldn’t be a reason for someone to need to be transferred to the mainland. Although the underlying condition might in some cases.

IoW has an adult ICU. Although some need to be moved to the mainland, they still receive care whilst that is being arranged and during transfer. Same for children who are transferred to a PICU.

Oh I see! I understand. So what should I do? Should I just forget the IoW then?

No-one here can tell you what to do.

No-one here knows your DS’s full medical history or the treatment he may need. Have you spoken to DS’s medical team?

Depending on DS’s needs, I think it is something to consider and be aware of, though. That isn’t necessarily don’t do it, but something to be aware of and take into consideration when making plans.

@ChasingMoreSleep

Thank you! There is a lot to consider. It is such a difficult decision. I will speak to hue care team as well as the staff there and decide from then on.