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A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

It doesn't cover it at all, but we aren't all that convinced a peer group would be helpful because the kids he gets on with are not those who have similar needs, though some MH input around his epilepsy (though very light touch) would be helpful.
But I think I'm just a bit confused about why we would even tell him when we aren't at all sure ourselves that he has a LD - if he does, as I say it's mild/borderline and many other things (social skills, mental health, epilepsy) are going to have a much stronger influence on what he does and his future life, so why imply to him that this will limit him? I think what I'm saying is it doesn't have any explanatory power for him - ADHD is a reason why he finds concentrating hard and needs to practice that, epilepsy is why he has his fits and won't be able to drive, but his learning abilities are not that different to a lot of children in mainstream school and a lot of adults who work full time, and are so poorly defined we can't even be sure he has them - so why bring it up?

That is why I said it depends on the wider context. What works for one, won’t for others. All needs must have corresponding provision. Acceptable isn’t about saying something will limit someone. Just like you explain how ADHD means DS finds certain things harder, the same can apply to LD.

Obviously if you disagree with the LD diagnosis then that is a separate matter.

I just don't think this is a need even if he does have a mild/borderline LD. Having the learning needs (which he does, but I think it's mainly language) is a need. Having to come to terms with them I don't think is a need.

Legally, it is. But if you don’t want it, just don’t include it in the WD. The LA is unlikely to add it since it would mean funding more provision.

Ds had a very bad day at college today. Meeting in the morning to discuss an action plan. He spiked a huge temperature as I got him home (slightly terrifying as you could feel the heat an inch away from his head). It dropped with paracetamol and I put him to bed so I suspect is the true source of his upset at college. I know they will think I’m just trying to make excuses and I don’t know if he’ll be well enough tomorrow (though he looks weirdly much better despite a cold sore appearing today too). I feel drained and worried. I feel like I’m supposed to apologise but I don’t think he can help any of it.

I should have said he was shouting and threw his bag towards someone.

DS had a tonic clonic this morning and a focal seizure tonight.
Coincidentally we started his melatonin again last night after not giving it over half term.
We've decided to stop it again. Fingers crossed it helps.

DD1 has had around 4.5 years of psychological input at specialist school/college to help her gain acceptance of her epilepsy and the learning disability/specific learning difficulties. I’d say her profound language disorder and memory problems have the biggest effects on her cognitive functioning.

It’s made no difference to her whatsoever. She sees every other member of our family went to university, got a job, found a long term relationship, got their own house and the freedom to go out whenever and wherever they want - she wants those and has the self awareness to know none of those are ever going to happen for her. She cannot accept that.

I brought it up with the psychological worker at her care home at the annual review recently. He said the epilepsy just has such a big impact on her life!

So, whoever said that to you about DC may be unrealistic?

I think I’d see it as being comfortable with who he is rather than focusing on LD or epilepsy. I’d be fairly forthright with the idea that a natural part of growing into the man he is supposed to be is understanding himself and needs to be part of all of his development not separate and focused on one deficit. It’s the part of love thy neighbour as thyself that people always seem to miss. It is easy to admire someone else turning that inwards is part of true understanding.

Hope DS is better soon @drspouse and your plan works.

Sorry about school @ZairWazAnOldLady hope he feels better soon.

Hope there's a way some of the load of you can reduce @Lougle Not easy with 3 with high needs. Is there anything practical you could outsource like cleaning, gardening, DIY. DS is also on the road to nowhere and its sad when its like that but your other two are making good progress and two out of three ain't bad as the song says. We have one out of two.

The cleaner is due to come tomorrow for first time though rescheduled for later in the day, which is fine as long as we have a days notice which we got. DH and I just spent 2 1/4 hours each together cleaning downstairs mainly from DS. So not that much needs doing now. I found the missing rug and underrug as well - its in the downstairs bathroom cupboard. I wonder if DS has washed them. I threw out the underrug as we have a new better one and its a bit thin. The rug looks fine so just kept it on the shelf. Had a Thai takeaway which DS loves. Booked almost everything for the holiday now.

Looked out the window this morning and saw DS has taken 4 of the excess squirrel and hedgehog stepping stones we had left over and made a small circle with them by the apple tree.

@Lougle I read your post on the thread about the changes to theSEND system. Does your DD have focal cortical dysplasia?

(If I have misremembered, my apologies - DD1 is home this week, so most of my thinking is taken up watching over her)

DD1 is not comfortable with who she is. She is acutely aware of what she can’t do. Sometimes she asks me a question and when I say “I don’t know”, she says in astonishment “But you can do things!”

Widespread subtle cortical dysplasia. So more diffuse than focal.

DD1 has focal cortical dysplasia in the right frontal and temporal lobes, and there’s also something abnormal between the white and grey matter. Queen Sq referred her to the 100,000 Genome project. They looked at 1200 genes the first time and found a genetic metabolic disorder and genes for learning disability (my three times great grandfather had a son put down on the census, as “an imbecile from birth”). The second time, they looked at 1500 genes, but couldn’t find any for epilepsy or the focal cortical dysplasia. GOSH had reckoned it was a neuronal migration disorder due to a de novo mutation?

They all couldn’t understand why her epilepsy was as severe as it was, just from a focal cortical dysplasia. They now think it’s the interaction with the metabolic disorder.

That's very interesting. Is there any treatment for the metabolic disorder? DD1's epilepsy went into remission as she grew.

DD1 had her Ed Psych assessment today. She was quite distressed and didn't want to answer questions truthfully because she was worried the Ed Psych wouldn't suggest college. We managed to convince her that this wasn't about college or no college, just 'what is good for the real DD1?' After last week's campaign for animal care college, this week it was all about art because you can sit down.

The EP phoned me afterwards and said that in her opinion only a completely bespoke, individualised education would work.

An OT company emailed today. They've been commissioned by the LA to do an OT assessment. So it seems that the LA took my threat of tribunal seriously.

The new cleaner did come with someone else (for first visit only) and they did 50 minutes cleaning each though wasn't much to be done as we did it all yesterday and DS shut the downstairs bathroom, I did that yesterday.

DS is using the cushions I got for the shed though outdoors but they are outdoor cushions so that's fine.

It’s so rare, there are no specialists on it in the UK. All they can suggest is a high protein diet with high doses of vitamin B3, to try to remediate the deficiencies, it causes. The triggers for it, are the same as her epilepsy - physical stress on the body such as hunger, pain, heat, cold, etc; or emotional stress. In her case, we think the obvious symptoms are the neuropsychiatric ones - depression, anxiety, emotional volatility, ADHD…

She’s very sensitive to the psychiatric adverse effects of the AEDs and has to be on the lowest therapeutic doses of all of them. I now think it’s connected to the metabolic disorder somehow.

Her epilepsy just got worse and worse for years, until they tried sodium valproate, clobazam, Rufinamide, cenobamate (which does nothing for seizure control, but improves her mood) and Depo Provera injections every 9 weeks.

Interesting reading @BlueandWhitePorcelain. We were part of the 100,000 genome project, but it didn’t show anything we didn’t already know about. Maybe in the future. It will be intriguing to see how the generation study unfolds longer term.

It doesn’t surprise me that DD1 needs a bespoke package, @Lougle.

Sorry to hear about the difficult day yesterday and temperature Z and seizures Dr.

Yes, when I was in the antenatal clinic last week, there was a poster asking parents to allow their baby to undergo genetic testing for about 200 conditions for Genomics England (iirc). It will be interesting to see if some children are diagnosed with SEND earlier, as a result?

Some already are being diagnosed earlier.

Can you tell me how to find the article(s) on this?

@BlueandWhitePorcelain what is the depo provera for please? Does it help mood or suppress periods? DD has provera for periods has it got other uses?

DH is away until midnight Thursday. I’m planning to go out to a club for an hour tomorrow night. It will be a first for me and DD to try this. I hope she manages as I think she will feel very good about herself. It’s a 12 min walk away (under 8 if I jog in an emergency). I’m sweating about it already.

@HedgehogsAgree The Depo Provera is to stop her periods. Her epilepsy is very catamenial! Days 26 - day 7 of her cycle, she used to have 70 seizures a day, including 6 drop attacks - she was ending up, being admitted to hospital the first day of her period every month. There was one bad day every week in that phase, when she’d have 150 seizures and we’d end up calling 999. (So, I could call 999 three times in a week.)

The rest of the month, she’d typically have 5 - 6 seizures a day. It’s about the oestrogen dropping.