The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Would you like her to go to residential school and come home at the weekend and holidays?
Would that be for that experience or predominantly working towards living in a supported living environment?
When you are older do you want her to live at home with you, nearby with your support or in her own place with her own support, or something else?
You don’t really need to have a goal but if you feel you are failing her, what is it you thought should have been achieved?
In families with multiple children there’s also the balance of what the others need and want. Will they stay at home or move out to their own lives?

@Lougle have you looked at St John’s in Brighton? Like some of the others, DD1 would be more verbal than many of their students, but I don’t think that is necessarily a barrier.

How far away are you looking up to?

@Wellzizizbetter I think she needs to go to a residential college because every day setting will result in travel/transition struggles and a pattern of lower coping ability until she refuses to go altogether. If home is an option, she'll choose home.

I thought weekly boarding might be ok if she was localish, but the Psychologist thinks she'll find it tricky and she'll need to board at least the first term as a termly boarder to get used to it. If it was a further distance, I think she would find the travel too much if it was weekly boarding because she'd have two long journeys with just a couple of days in between.

When she's older...well I want them all to be happy. If she can cope with living at home I certainly wouldn't ask her to leave, but she isn't coping. I don't know what the other girls will do as adults.

I don't, at this stage, think she would be able to live on her own with 'pop in' support, either from us or carers. If she lived out of the home I think it would need to be 24/7 support. Possibly, if lots of work was done she could have day time support...mmmm.. Not sure tbh. She wouldn't cope with shared accommodation.

@inthequietofdawn I haven't looked at St John's recently. I will do.

If she was termly boarding, then the distance could be longer, I guess. A couple of hours would still make mid-term/weekend visits doable.

Honestly, I don't know if any of it would work. But I know that if we don't try something she'll break down and end up in a challenging behaviour unit or similar, which isn't what I want for her. I want her to have choices.

The care is typical of her. She's disappointed that she has no care tomorrow and is talking about how she could have gone to a gym, but she's not coped with more than 30 minutes with a carer and is currently wearing a TENS machine because her back is so painful. If I had booked a session tomorrow, she would have been in our room at 3 am, telling me that her back is so painful and she doesn't think she'll manage a care session.

How am I in July with no provision again?

@Lougle if you are open to termly boarding opening up options further north, have a look at David Lewis (the college part rather than the school) in Cheshire, Royal College Manchester in Stockport, Camphill in Wakefield and Calman Colaiste in Peterborough. They would be too far for DD1 for weekly, although I know some travel such distances weekly, but are definitely possible termly.

There is a poster who was considering David Lewis and Royal College for their DC. I don’t know what they decided in the end because I haven’t seen them around for a while, but if you want a personal experience, if you start a thread they may see it.

Other than that and the ones the LA has consulted, I’m not sure I have other suggestions. There’s Portland college in Nottingham, but I’m not sure it is the right fit.

I'm hoping that either The Sheiling or National Star may be a good fit. I just want her to have a chance to thrive again.

My solicitor suggested National Star to me, at the time we were thinking about FE college for DD1.

He held a conference there, which I went to. The environment, what I saw of it seemed nice, although I didn’t go on the tour, because DD1 was settled by then.

I think while on the one hand, we need to do some long term planning, because we can’t leave EHC plans to the LA’s whims; on the other hand, it’s best to take DCs’ lives one day at a time. We find it’s like John Lennon said, along the lines of:

”Life is what happens when you are making other plans.”

Very true @LathkillDale and I need to reminder myself to ground into the here and now. the LA forcing me to think about Post16 makes me think I lost sight temporarily of the here and now. DD has made so so much progress in the last 18mths I hate that the AR progress makes you focus on the negatives & gaps to get to “MS” when really I think it’s never going to fit for her yet she has all the ability to function longer term in this world but her social / life skills will take 3-5years longer I think to develop. Sigh I don’t want to squash her back into the “ms box” again next year knowing it has a very high chance of failing & setting back some of the amazing progress she has made recently, yet I then doubt myself what if I’m wrong & holding her back by not pushing her.
We are having a week away in the SW & definitely have a great place by the sea to be a few degrees c cooler than if we had been at home. Eldest is driving down to join us after work for a couple of days. It will be her longest drive yet as it’s 3hrs from home so I’ll be on tender hooks hoping she arrives all ok.

I hope you have a lovely time @Beachgosling

DD2 had a college taster day today. A member of staff from school met us there, and they assigned a LSA to her from college. It was very overwhelming because there were so many people queuing up, but they offered her the option of going to the sensory room, then she managed to join the session. She decided to leave half-way through, but chose to go to school, which is amazing.

I'm away for work (again) but I forgot to say DS had a successful sleepover at my DF house, everyone visited my DM briefly, and DD attempted to go on school residential in the Lake District without a waterproof but DH was wise to that.

Yes, @Beachgosling have a good time in the SW. A beautiful part of the country!

Enjoy SW @Beachgosling

We have now heard neighbour will take tree down and just arranging dates with them. Think it will be end of July. Our next door neighbour has said she is fine with our planning application.

DD is home, lovely to see her. She's got a very exciting summer planned, including she has managed to get a 2 week holiday in China for a rowing regatta, all paid for her by the university and China based in Chengdu so she will see the pandas as well. Also going to two European cities on holiday.

@Lougle thanks for the new thread. It is very painful to miss a version of your child that they can’t seem to find their way back to. Things can change for the better and you are doing the most difficult work and worry finding the transition to adulthood.

I think education is a worthy pursuit in its most basic form, not as a means to employment but as a gathering of knowledge that helps with life skills and connection with others. Self esteem from education is priceless.

@Tulipandmagnolia great news on the tree! That moved quickly. How about a gazebo with flaps for DS while the shed is gone?

@Tulipandmagnolia or a teepee and cushions.

Have a great holiday @Beachgosling

DD has decided that she is ready to have the 2 vaccines she is missing. Back to the drawing board on how I can make a home visit happen.

@Beachgosling I hope you have a lovely time away.

@Lougle glad the visit to college yesterday went so well.

@TheGoodCat that’s a big step. I would start by asking if a practice nurse from your GP practice will do a home visit. If they won’t, I would investigate if the district nurses/community nurses will give them at home. If that’s a no, I would ask the LD team if they will. Although DD doesn’t have an LD diagnosis, in some areas, the LD team runs vaccinations for those needing more complex adjustments for reasons other than LD.

DS1 is unwell. I’m not sure exactly what is wrong with him.

I'm home, DD still on residential, I'm exhausted so I reckon DD will be tomorrow!
DS asked to watch a mystery programme so we are watching an Agatha Christie because I reckon there will be less blood and gore and it will be more visually exciting than more modern stories.

@inthequietofdawn I have a call with the practice nurse scheduled and hope things have changed as the last time it was a ‘no can’t do’ but the surgery has been promoting a missed vaccine service so fingers crossed. The big difference is DD has requested it 😮. Poor DS1 being ill in summer is extra hard, hope you get to the bottom of it.

@drspouse keep banging that drum for a suitable level of education it’s awful that DS has been shelved. Lemony Snickets series was a hit around a similar age to DS.

@inthequietofdawn sorry DS1 is unwell again. Wouldn't it be nice if a light flashed above his head to tell you what you're dealing with instead of the mystery tour of potential diagnoses?

DD2 has confided that the main LSA that has helped her at college doesn't make her feel safe. She feels that she's an anxious person so DD2 is picking up on it. She really felt comfortable with the LSA that met her on college visit 2. So I've emailed the ALS lead to say that, and I hope they'll consider it when they're allocating staff.

@TheGoodCat I do hope someone can facilitate DD's bravery!

@drspouse I hope DD is enjoying her residential.

@TheGoodCat DD deserves more understanding from the GP practice.

@Wellzizizbetter I know you were asking about motabilty lease extensions not too long ago. From the 1st July, Motabilty have changed their rules slightly. They are offering some people lease extensions when they wouldn’t have been eligible under the rules before 1st July.

@Lougle fingers crossed the college is open to listening.

Now that would be helpful!

A former colleague has been posting about her son's school experiences - he has ASD - I just saw he's off to an SEMH school and my heart is absolutely sinking for her.

Why? Genuinely curious. I only know about specialist speech and language schools or epilepsy schools; and parents in various groups in my county have told me about their children (mainly with ASD) in the MLD schools.

No other school will take DS and it's partly because he's in an SEMH school. Their focus seems to be on babysitting children and not educating them, and they have really low ambition for the DCs - they have no incentive to aim higher because nobody holds them to account. Many of the other children are very hard to cope with, and DS also copied quite a bit of their behaviour (though less so now).

And if teachers in other settings (like the English tutor we found) won't even touch him, you can't actually get an education for your child.