The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

@NoHaudinMaWheest I would like to talk about personal hygiene hurdles more. Some things are, well, too personal to post.

Yes, it's tricky to post about but we also face these issues.

Thanks for DD2's congratulations. It's very kind of you all.

lougle and thegoodcat we really need that meet-up.

Yes!

Great hydrotherapy went well for DD1 @Lougle

Thanks @NoHaudinMaWheest Its hard when they go out of sync though your two are doing really well with your amazing support.

Paid for shed roof removal and paid new shed deposit. Well hopefully we have paid new shed deposit as bank gave a strange message saying call us in 2 hours if we haven't paid this but roof removal has gone through. After DH put the temp roof on the shed yesterday and then went to get the cats tuna he said DS was slightly slamming doors and he thinks he was either not impressed with DHs shed roof or dinner being later than usual. But DH brought back cream cakes and DS ate two of them and seems quite happy and in the garden a lot today. DH on the other hand was very impressed by his own DIY skills but when we looked at the shed so much of it would need changing it makes more sense to replace. I also want everything to last for years and years when possible so if anything happens to one of us the kids won't need to do any work on house.

And we have the black bin lorry - happy days 😎

@Lougle that’s brilliant.

@TheGoodCat I know what you mean about having things you want to post about but can’t. I have a question not suitable for posting publicly online. I don’t have anyone to ask IRL either. I asked a urology nurse specialist. They looked at me strangely and said they didn’t know and no-one had asked that before.

@inthequietofdawn I've PM'd you.

I'm always getting strange looks when I ask questions 🤣

Idk about all of you, but I have to discuss some things. Every year, there’s an annual review to discuss DD1 being on sodium valproate. I say, she can’t give informed consent to sex, never mind pregnancy and child birth and I suspect pregnancy could kill her. The only way she’d get pregnant is sexual abuse.

My chat with medical professionals is fine, it’s more the personal behavioural hurdles or oddities that I’ve not come across before. It’s amazing how often I think something is exclusive to DD and it’s not.

@inthequietofdawn if there is a possible gap in your schedule and you want to come to the meet up that would be lovely. I always leave feeling lighter and less alone. I pick up new approaches to the un postable shared personal difficulties.

The meetups are the highlight of my year. It really is so good to be able to chat freely without the worry of who might be reading. I love it that we spend ages reminding each other of who we are!

I have no problem speaking to HCPs, but there are some things which aren’t appropriate to discuss on a public forum. Although the nurse specialist wasn’t particularly helpful in this instance. @Lougle has been far more helpful and didn’t think it was a strange question.

@TheGoodCat I struggle to get time away for meet ups, but let me know what date you are meeting and if I can come, I will.

DS1 is at respite tonight. The rest of us went to crazy golf (DS2's choice) then for something to eat. While I always feel an element of sadness DS1 isn't with us, I have to remind myself he wouldn't cope and doesn't see it as missing out. It is good to be able to spend time with DD2, DS2 and DS3 without having to worry about DS1 or focus on his needs.

@inthequietofdawn I'm battling with all of those feelings at the moment - DD3 was desperate to go kayaking and it's so expensive here. It would have been about £80 for an hour for the family. We've joined a canoe club with a yearly membership for £90, and they give free courses included in the fee. Plus, they have all the equipment for us to use, and it's only 4 miles away. DD1 can't possibly join in. To my relief, when I mentioned to my MIL today that we had been given our first session on Sunday, DD1 said 'Umm..what's happening with me, because there's no way I can cope with kayaking...' I told her she was going to Nanny and Grandad's and she just said 'Phew!'

I so wish there was something we could all do, but the reality is that it never works.

We have a similar problem with the together, or separate activities. It’s hard not to include, but sometimes the truth is he’d hate it. The result is often we only do ds1 activities. It makes me sad.
The flip side issue I have is ds1 really only truly enjoys trips/holidays/activities if ALL his siblings are there. It makes it SO expensive to do anything, so we have to do things much less than he would otherwise. I’ve never found a comfortable solution.

Meet ups are lovely though I am often exhausted afterwards. It’s impossible to talk about large parts of ds1s care on a public forum. It wouldn’t be appropriate especially now he’s an adult. It’s also nice to put faces to posts. Honestly I am so envious of those of you that stay longer.

I’m turning my attention to “what next” for our day to day life. Not in a particularly urgent way as truly ds barely attended college last year and certainly for the last half of the year it was more disruptive than positive.

We are starting sodium valproate in a few weeks as his epilepsy has become significantly more difficult. I feel very unhappy about how much impact it is having on him and I suppose us. Hopefully the valproate will help but it may make him very hungry so I think more exercise and less time wallowing around at home will be a good idea. He is already heavy so it’s going to be difficult to manage.

He has swimming, gym, rebound (trampolines), and drums during the week. Any ideas for new things to do would be really welcome. I have PA time for accessing leisure and community (and could probably get more funded if needed) or I could go with him myself. He absolutely will not “go for a walk” or anything like that. It needs to be focused on the activity rather than the exercise. I’d love to take him away for overnight adventures now the other children are at university or working and I’m not tied to pickups and drop offs, but where to go?

How physically able is DS, @Wellzizizbetter ?

Quickly exhausted now, but normally very able. My feeling is if we went slowly he would get back to rather too hearty young man. It’s hard to see what’s epilepsy/neuro, what’s meds, what’s loss of tone and what’s depression/ennui.

I also remind myself our other DC need time away from DS1 and with me and DH together. When DS1 is around, his needs mean he gets more attention. DS1 is hard work and intense even though other DC aren’t directly caring for him. We do a lot where DH and I split up and one of us cares for DS1 and the other goes with any combination of the other 3, but sometimes it is good for them to have both our attention.

@lougle is it DD1 wouldn’t cope with the physical aspect of kayaking, canoeing, etc. or is it she wouldn’t cope more generally? If the former, have you looked at any adaptive sessions? DS1 has been adaptive kayaking and canoeing. Physically, DS1 doesn’t do anything other than sit there, but the experience is good for him even if he moans/shouts/growls. He has also done things like adaptive sailing, surfing and wet wheels. I think your DD would enjoy rebound therapy, too.

@Wellzizizbetter what about surfing, kayaking/canoeing, climbing, archery, skiing? They are all available as adaptive sessions if needed. Gymnastics (DS3 has a 1:1 session as part of his EOTIS package. It isn’t a gymnastics session that those who know mainstream sessions would be recognised, but DS3 enjoys it. His favourite part is the foam pit.) Cookery lesson (DS3 has a 1:1 lesson with an ex food technology teacher, but I know some who use specific cookery lesson companies and I know another MN’er's DS has a lesson with a chef). Horse riding.

Do you have any soft play centres who offer adult sessions or SEN sessions without an upper age limit? Or any centres with inflatable assault courses?

Outdoor activity sessions. Like forest school. Some provisions will work with DC up to 25, some offer 1:1 and some don’t require LA (education) funding.

Driving experience. There are companies who will still offer experiences to those who never be able to drive. Along similar lines, depending on DS’s ability, a flight simulator.

Would DS go for a bike/trike ride, or is it in the same category as going for a walk? There are inclusive cycling sessions run across the country where you can try different bikes/trikes.

What about a personal trainer? It doesn’t have to look like a tradition PT session.

For an overnight adventure trip, you could look at Calvert Trust or Bendrigg.

@inthequietofdawn thank you. Today has been very hard and this gives me hopeful avenues to pursue.

@Wellzizizbetter if DS enjoys music how about break dancing or capoeira or making up routines to favourite songs. Comedy sketches are quite popular here at the moment which involve movement rather than sitting.

Sorry today is hard @Wellzizizbetter. Great that you have got all your others through to work or university from September / October, well done.

My DS obviously won't do these things now but before he did swimming, was fascinated by machines at gym as they counted numbers, trampolines, ziplining - higher the better, gorging, canoeing, kayaking, climbing, rowing, going in caves, white water rafting. He tried wakeboarding and snorkelling but didn't get on with either, has issues with anything with equipment you put on. Would walk in rainforest but would not 'go for a walk'. He did love Tresco gardens on the Isles of Scilly though and loved all the islands and did walk round those and photographed the red squirrels. He enjoyed the swim with seals trip to Lundy from Ilfracombe though weather will turn for that soon. He would only look at the seals but enjoyed the boat (loves boats) and loved climbing Lundy and seeing the wild animals though he did need to be told don't walk up or down cliffs and then we'ld get why not? 🤔Bath was also a good base - Bath spa is really nice if he can cope with people and Cheddar Gorge I think has rock climbing / caves and Bristol had a good trampoline park. He used to love the glow in the dark golf they have in Bath in the winter and could get hot chocolates there. Tried skiing but he seemed to like cable cars, snow and hot chocolate and not have the patience for it. He used to like the feed the animals things at zoos. Hope you can find something.

DD is in Austria, and DS in the garden. We are having afternoon tea for DHs birthday. Shed have confirmed got deposit so on Monday should get more details. Day out tomorrow.

@Wellzizizbetter I’m sorry today is difficult.

A few more suggestions.

I think you have previously said DS likes Lego? You could look Lego Therapy. While it is often delivered in a small group, it can be delivered 1:1.

Did you ever find someone to restart pottery? I recently came across a day service in your LA which offers pottery.

Would DS take part in any disability team sports e.g. football, basketball, cricket, or would that be too much for him?

If DS can cope with the sensory input, bowling?

@Tulipandmagnolia it is very hard to look back on the version of a child/YP that used to enjoy so much. How is DS responding to having less people visit him to ‘help’ him? Can you see an improvement in his mood?

@Wellzizizbetter for all round movement we have a running joke that I’m too short to reach things so I ask DD to get things for me throughout the day if we haven’t left the house. A very small thing to do but it makes her stand up regularly throughout the day. So it doesn’t go from a walk one day to zero movement the next.

New bedroom chair has arrived! It’s enormous not sure it will fit but fingers crossed the old sad memories one will be leaving the house today.