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[ExistingonCoffee]

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.

Thanks @ExistingonCoffee at least I haven't missed something. I don't really know what to do. DD2 went pale during the third session. It was so obvious she was struggling. Although I was really proud that she put a finger up to answer a question. I was also encouraged that I got mixed up and contacted the college to check if there was TA support, and the answer I got was 'This isn't the event that has TA support.' Then I got a further email saying 'This TA can support her at the event'. DD2 also managed to ask the TA if it would be possible to arrange that she always sits next to the door if she goes there.

@Lougle that sounds really difficult mixed with some positives. Do you think the open events were busier than an ordinary day/session would be? If you don’t think mainstream college will work, what about an EOTIC package built around animals?

I think I forgot to say that DD was diagnosed with ADHD yesterday - even on the Teams call the assessor could see her fidgeting, in fact from memory she was more fidgety than DS at his assessment when he was 7.
We can get medication through them and it will be NHS (i.e. free for kids) but there's another wait, 3-6 months.

That's really positive @drspouse . Hopefully it will help her make better progress when she's medicated.

@ExistingonCoffee she really wants to be a veterinary nurse. I can't see how she's going to manage at college.

@Lougle I think it depends on the college and on dd. It’s perfectly possible to attend school, college or university and successful attendance can look very different for different students. If you have a setting who only see making a student “normal” as a good outcome then it’s a disaster.

Thank you, you're right. I should have said 'this college'.

I've written to the SN Caseworker and said that unless she can think of a specialist college that is commutable and offers animal care, then we need to revisit EOTIS because I predict that if she goes to this college she will be a non-attender by Christmas 2026.

@drspouse a diagnosis is always a lot to take in even when it’s expected. Great that you got this far but I’m sure your brain will be full of noise of what comes next.

@NoHaudinMaWheest hope the pain is getting better.

DD has new going out shorts and has taken to them. So we have night shorts and day shorts now. They are very similar but a different cut. She looked gorgeous with a spring in her step wearing them out.

Yay for shorts! Your girl is really doing so well @HedgehogsAgree .

That's such lovely news @HedgehogsAgree . It's the little shoots of progress that keep us all going!

Thanks guys, there was a lot of objection to me allowing DD to go outside in men’s pj shorts but that was the only acceptable clothes at the time. No regrets as she is out now and has women’s outdoor shorts - that look so similar to the pjs that it’s hard to tell the difference 😆

Trundling through the LPAs and wills. The cost is eye watering compared to doing it myself but I really wanted it to be clear to DD that an independent person has been involved and hopefully establish a future relationship with a local law firm for her.

Maybe an outing photo but the thread is disappearing soon. Our trusted walking route has benches every 6 meters and really is beautiful.

Good diagnosis is done @drspouse

Good news on shorts @HedgehogsAgree

Discussed projects with DH and he says we can only do one of the three projects to start with and he said the bedroom. I said we could try and get permission for that as may not get it and will be ages and so could do DSs bathroom after easier permission for that and he was OK with that. But said no to shed due to finances and not wanting multiple projects at same time and said to do in 2 years. So I got back to them with sorry need to do this later and explained about DS. They didn't come up with a cheaper solution but did say they do a lot of work for special schools and their products are tough.

We are going to do work once can go on new lawn on current shed and also I want to really learn about everything to do with shed preservation. I don't want to spend significant amounts without being sure we can keep it in good condition bearing in mind DSs character and taking things apart. We are going to put gutters and water butt back on current shed and test if DS can tolerate them now as it won't last if he can't. Also have found some treatment for wood and investigated better paints.

Called private OT and they have now quoted £1,300. They can just take referral from us and do home visit but they do need DS to co-operate (think there is zero chance of that). But apparently we can fill in form and have a call with allocated therapist and they can say if possible. I am not terribly keen on form as it says we agree to quote. But they sounded honest.

DS is being good with lawn and sticking to paths. DD back on Sunday with all her stuff.

@drspouse I hope the meds help when DD starts them.

@HedgehogsAgree ,ovely photograph. Good news on the shorts. DD2’s wears some men’s clothing because she prefers the looser cut.

Drspouse good that Dd has her diagnosis.

squirrelsandhedgehogs It is good to have a plan going forward. We had a private OT assessment for Dd two years ago (very different issues I know). While it did produce some useful things I am not sure it was worth the hefty cost.

HedgehogsAgree shorts outside is real progress 😀
Thanks for asking about the shoulder. The private physio I saw thought that is actually mainly pressure on the nerves in my neck. One session obviously has only helped a little but it does make management better. She seemed good so I have booked Dd in for next week as her hip pain is ongoing and affecting her back as well now.

That is a beautiful photo! I was going to take a picture of our magnolia tree for you, but I've realised it's not in bloom anymore. I don't know when that happened or how I didn't notice it!

DD2's work capability assessment was a bit of a marathon. I had a call today to say that there have been reports of non-working video links and links not being received, so she wanted to check that we had received one. Then she said that the practitioner has to read all of the evidence at the time of the call. Apparently, the person who initially reads the evidence and decides what assessment should take place is not the person who does the assessment, and so many people don't turn up that the assessing practitioner doesn't read the evidence until the person shows up for the call. She logged that DD2 would not want to take part after the identity verification.

Then, at 3.20pm, 10 minutes before the call was due to start, the same lady called me to say that the practitioner was running late, so could I wait 30 minutes to log on so that I wasn't hanging around. Then the video call actually didn't start until 4.15pm. In the end it took 1hr 15 minutes to work through all her questions. She says she thinks she has enough to take it forward, and she'll now read the rest of the evidence and write her report.

I don't know quite how long it will take for a decision. Online people seem to be saying anything from 2-12 weeks.

@Lougle DD had a home visit and it took 4 weeks to get the decision.

@NoHaudinMaWheest glad the physio was helpful.

@Lougle I hope you aren’t waiting too long. Mine had paper based assessments, but I know people waiting from 1 week up to 4 months after their phone, virtual or F2F assessment.

I don't know what to do about the Motability car. DD1's car is due for exchange in May. The new car is in the country and the dealer expects that it will be ready on the day the lease ends. But now there is talk of DD1 going to residential college and I've seen various things online ranging from 'As long as you're using it for their benefit when they're home in the holidays it's fine to use it' to 'You will be committing heinous crimes if you even brush past the car on the driveway if your child is not present at the time.'

We can't have a large car sitting on the driveway to be used every 6 weeks...but then at the same time I don't even know if DD1 would weekly board or termly board, etc. Her psychologist said on Friday that she thinks DD1 should board for the whole of the first term at least, so that there is consistency, and she thinks she would find weekly boarding too difficult at first. But then again, I don't even know if there it is going to happen.

I don't want to start a lease in May that we have to give up in September, but at the same time, we would need a reliable car so that we could visit DD1 if she ends up at a college some way away. We also need it to be big enough that it can take her wheelchair, power assist, track wheel, etc.

I would carry on. You don’t know if the plan for residential will even come to fruition. Many have to appeal for a residential placement, too.

If DD1 goes to a residential placement, you can keep the car if it will be regularly used for DD1’s benefit, including you visiting her rather than her coming home. For accurate information see this leaflet from Contact.

I always took it to mean, when DD1 was in residential college, that if I was going shopping for food, clothes, etc for DD1 (usually before she came home for the weekend/college holidays), then I could use her Motability car for that too.

The care home has her car now, when she’s there. We drive there in our car to collect her for home leave, leave it there and then drive us all back home in her car - bearing in mind she spends 30% of her time at home.

Thanks @NoHaudinMaWheest Glad the physio helped and hope it helps your DD. Thanks for the thought on the OT - I am thinking the same that £1,300 seems a lot. At this stage I am just trying to plan and brainstorming things and trying to establish options and research.

Did 2.5 hours gardening with DH today and also measured the shed and the larger concrete base it stands on. Shed was 228cms plus 106cms extra on the base so around 11 foot max and deep it was 172cms so 5 foot max that way. I did have a thought, our thatched cottage doesn't have gutters so a thatched shed would not have gutters so the gutter issue would be solved. Just the small matter of £13k to £20k to pay for it. Its annoying the PIP renewal could come in June this year for June next year and likely to be up in the air for a while. The other way we could do it is not do the bathroom now, apply for permission for bedroom and shed and do shed. Bedroom will take forever to get permission. I think DS will prefer the shed as he can use our bathroom and its more an issue for us than for him. Though he would probably live in the bath if he had one downstairs. He had a bath whilst we were gardening. DD noticed has been using Nintendo. DD is back to Oxford tomorrow and we get a new tap for upstairs bathroom, DS has also knocked the toilet seat a bit so need to sort that but hopefully upstairs bathroom can all be sorted next week.

@Squirrelsandhedgehogs tomodachi life is just out on Switch. DD is enjoying it. @Lougle i think DD1 would like it.

@Lougle i would get the car, it seems easier to give it up than have to start from scratch ordering again.

Thank you! I'll look at it.

Wouldn't it be nice if life was simple and we didn't have to worry about these things?

DH turns 50 this week. We arranged a lunch out for his brother and wife, a couple who we've known since I was 16, and his DM who has moved over from France. Oh my word you should have heard DD1 yesterday. Waxing lyrical about how she hardly sees Daddy because he works all the time (he works standard full time hours and is home by early evening on most days), she misses spending time with her Daddy, so really she should be invited to the lunch. DD3 was really intolerant, having had a bad day, so she lit the metaphorical blue touch paper by telling DD1 she was a liar what lies and she can't stand it when people lie.