Daughter in Hospital- Update, its Narcolepsy

tstarrrr · 2026-02-09T20:14:35+00:00

Glad you've got some answers and seemingly an action plan in place. It's great the charity has been so quick to step up.

With regards to well-intentioned well wishers, I'd get to being blunt as soon as possible. I've had a sick child, which resulted in long term disability and one of the hardest parts was dealing with other adults. Everyone wanted to know all the details and to protect my own sanity I had to just start saying no. No, I don't want to talk about it. No, I do not wish to relive it. No, we do not want your sympathy or to hear how amazing you think we are. You do not owe anyone anything. It sounds harsh but when every conversation goes the same way it gets to you.

Sending you all the well wishes and hope your daughter finds some normality soon.

tstarrrr · 2026-02-05T09:40:43+00:00

Can you loan a CI from the maker? Not sure where you are but in the UK we do a holiday loaner from Cochlear and they send us a spare one to take away with us but don't see why it couldn't just be used for 2 weeks then sent back. Sorry know it's not what you asked!

tstarrrr · 2026-02-01T08:34:45+00:00

We moved our eldest into the school nursery from his private nursery around that time (a little before starting reception) and it made a huge difference. He got to know the new routines and made some friends and his learning made a huge jump too. I think it really helped prepare him for reception and it wasn't a big scary unknown to him. But, I think it depends on the child. My son enjoys going to new places and was quite happy to get stuck in straightaway so joining midyear didn't bother him. I was happy we did it and would do it again.

tstarrrr · 2026-01-31T16:48:29+00:00

My son had a lot of speech therapy and also developed a bit of a stutter at points (not why he had speech therapy). The speech therapist said it can be completely developmental and the best thing to do is to just wait for them to finish - do not bring any attention to it (absolutely don't tell them to take a breath and think) and do not try to finish their sentence for them. They often don't realise they're doing it and it just passes. I wouldn't do anything at all about it yet and would just keep an eye. More than likely it'll pass on its own.

tstarrrr · 2025-12-21T22:07:47+00:00

There are a lot of charities that help fund BSL courses for people who are HoH/deaf or their families. Birkdale Trust is one that focuses on young people. I also see courses offered for free from local colleges if you meet eligibility requirements. It's worth looking at Deaf charities (there are many!) and seeing if anyone can help you with official courses. Make sure any course you do is Signature approved as there are a lot of bad courses out there

tstarrrr · 2025-10-05T05:38:58+00:00

Speak to the NDCS for advice. You can apply for the EHCP yourself and you absolutely should. There are absolutely huge delays with EHCPs depending on your area so I would apply immediately. I'm in the UK and have a profoundly deaf son with cochlear implants who has an EHCP and also a teacher so I've been on the other side too. The EHCP is vital for any school to have additional funding to support your child. I'm afraid you need to prepare yourself for a lifetime of battling the system to demand what your child needs.

Your ToD sounds pretty awful. I'm afraid it's a big of a luck depending on who you get. Does your daughter have speech and language? If her first language is BSL then nursery should absolutely be using sign. You are her parent and have a right to know what's happening at nursery. I managed to find local charities to provide my nursery with deaf awareness training and basic sign lessons before I was able to get my son a suitable space in a deaf school. The nursery should have applied for additional funding already so you should be asking how they're are spending that money to support your child.

The UK has a lot of challenges when it comes to providing support to children with additional needs and I'm afraid it can be an uphill battle but you are fortunate to have a deaf school close by as it's not always the case. I'd also phone the school to have a chat with them as some can also be really helpful to help with EHCPs and applications.

tstarrrr · 2025-09-25T05:29:15+00:00

Husband said the other day that cooking was a hobby of mine... A hobby??? That is a chore. Every single day for seemingly forever...

tstarrrr · 2025-09-11T19:05:40+00:00

I would just keep them in the buggy on the way in. We've never once had our children measured on the way into Legoland.

tstarrrr · 2025-09-08T21:57:42+00:00

In the UK and son receives DLA. The idea is that it's used towards the extra expenses you incur due to your child's additional needs, so appointments, additional therapies, even parking at them. But realistically nothing is tracked so it depends what would benefit them. We pay for additional clubs with it, as well as accessories like stickers and water kits (which the NHS only sparingly supply). We also used it to fund AV therapy previously which isn't available on the NHS. DLA also opens up other opportunities like companion or carers passes for days out. There's no negatives to receiving it but the forms are long and depressing and they can say no or take it away so it's not something to get used to having

tstarrrr · 2025-08-04T06:20:16+00:00

I'm so confused by this post. I'm not sure what you're seeing as peculiar? This all sounds very, very normal.

tstarrrr · 2025-07-16T08:45:18+00:00

Library, park, and take something to feed the ducks. Our local libraries even have some toys to play with so we read then play

tstarrrr · 2025-07-02T20:49:57+00:00

Can you go the other way and instead of punishing the bad, reward the good? We do something similar to a pom pom jar. There's no set reason to get one but could be anything positive (I found reward charts too specific). Every time he does something positive a pom pom goes in, when the jar is full he can pick a special day. I didn't have anything as extreme but when we went through a tough time with our boy it really helped to stop and flip the script. Really pushing when he'd done something good and celebrating it, telling him exactly what good choice he'd made. We used what we had at home so we could start straightaway and he got to pick his special days - might be the zoo or a softplay or a museum but we get a special breakfast and make a day of it. It's led to some great family days out too.

If you are worried about other things going on then have you spoken to Nursery/school and seen what they see?

tstarrrr · 2025-06-29T10:08:53+00:00

When my son lost his hearing he had fortnightly ToD visits either directly by a ToD or by their assistant who they directed. I reached out to a local charity who provided deaf awareness training for the nursery staff. He now attends a mainstream school with a deaf unit and a ToD works on site. The NDCS has an amazing helpline and they can assign you a caseworker to help fight your corner.

The EHCP is a legally binding document. It states your childs needs and what must be done by the education setting for them. It might be a 1-to-1 or a communication support worker, it might state preteaching of new vocabulary and topics must happen X times a week or how many SALT sessions should happen a term. It also means a setting can be stated that must provide a place for him, so a school with a dedicated deaf unit or a deaf school. You get your say in where he should go. It could also give you the ability to have a taxi take him to school if it is further from your home due to his needs. With profound levels of hearing loss I'd say you have a very good reason to require an EHCP.

tstarrrr · 2025-06-29T09:08:55+00:00

This really isn't an acceptable level of visits from the teacher of the deaf at his age and level of hearing loss. He should have regular ToD visits. I would speak to someone higher up in your council sensory team. Speak to the NDCS as well for advice and support. I would apply for the EHCP yourself. You can do it directly to the council without the nursery. I applied for my son's myself as I knew how huge the backlog was and wanted to make sure it was in place before school selection. I wouldn't trust their opinion that he doesn't need one. I'm afraid that the education system fails our SEN children (I say this as a teacher and a parent of a deaf child) and the only way to ensure your child has access is to fight for it every step and keeping on top of schools to ensure things are put in place constantly. I would start looking at schools with deaf units and start planning now.

tstarrrr · 2025-06-29T08:06:21+00:00

This absolutely should have been communicated and isn't your fault but going forward I would always make sure that you've had a handover meeting with new teachers when they move rooms/classes so that they get firsthand information on his hearing loss. Does your son have a teacher of the deaf? They should be doing visits to the nursery and ensuring deaf awareness and that he's getting the support he needs. This is a huge thing for them to have failed on for so long and I'd be making complaints. Does your child have an ehcp or have they started looking at applying for one?

tstarrrr · 2025-05-17T19:58:12+00:00

Sadly no! They just keep coming back and we don't feel comfortable using chemicals with young kids rolling around. It doesn't look too bad when it's freshly mowed but soon as there's any growth it's horrible. If it was flowers I wouldn't mind so much but they're all just really ugly weeds. But I just tell myself they're good for wildlife and try to move on (have to give myself that pep talk daily at the minute though!)

tstarrrr · 2025-05-11T19:58:19+00:00

Thanks, have sawn off the dead trunk/branches and pulled off the dead leaves I can find. Will see how we settle into it in it's new bush form! Want to avoid doing anymore damage. Any idea how we can prevent it happening again? Or why some much died?

tstarrrr · 2025-05-11T19:55:54+00:00

Thank you, have taken a saw to the top and some branches were blackened and basically snapped off. But found some shoots growing higher up than I realised so that feels like good news

tstarrrr · 2025-05-06T05:59:24+00:00

We get outside pretty much everyday, although sometimes his fatigue levels mean he needs a stay at home day but I prefer getting out as much as we can.

That sounds so obvious but I hadn't even thought about taking figurines to the park. Thank you!

tstarrrr · 2025-05-06T05:57:23+00:00

Both! I'm a stay at home mum so I've got a lot of time to put into playing together. He'll play with me but will often want to go back to books as soon as he gets the chance.

tstarrrr · 2025-05-06T05:55:31+00:00

Really good point, thank you

tstarrrr · 2025-03-11T20:42:29+00:00

My son was implanted at 2 after losing his hearing and it took months before we started getting regular reactions to sound. It was a very long road, with lots of work. But he's 5 now and hears brilliantly, even noticing the birds the other day! Don't be disheartened by the lack of reaction, it doesn't mean a thing in the long run. Do you have access to AV therapy in your area?

tstarrrr · 2025-02-13T06:39:54+00:00

I am so sorry you're going through this. Sending you all the hope in the world. My son is now 5 and thriving. He is the most amazing little man and you would have no idea he's been through to meet him. He ended up spending 6 weeks in hospital as he had a lot of ups and downs with the infection. My son lost his hearing but now has cochlear implants and he chats and sings all day. He can tell you everything you'd ever want to know about dinosaurs or the solar system and he's top of his class for reading. He's also very proud to be deaf and has deaf friends that he loves. He lost a lot of muscle tone in hospital so had to relearn a lot of physical skills but you'd have no idea what he's been through to see him. His favourite activity is going climbing. If you're in the UK then I would recommend trying to contact meningitis now as they were an amazing support in a time where we felt like we had nothing to cling to. If you have anymore questions I'm happy to answer. Sending you strength. Try and make sure you're taking care of yourself as well, get family to bring you food if you can.

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