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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.

@Lougle I know DD1 struggled with PAs/carers in the past, but I wonder if it is time to revisit that decision. The right carer, and maybe specialist SEN teacher, so there is 2:1. Not any old PA. You can’t do it all. You can’t be everything to everyone all the time. DD1 will struggle even more if you reach carer burnout. DC with complex MH needs are intense. It is too much for one person.

DS1 likes the idea of some things better than the reality. There are lots of contributing factors: lack of insight, not being able to understand exactly what is involved, I suspect he has aphantasia but it is difficult to know with his more limited communication, fatigue, anxiety, sensory overwhelm, social demands (even if the activity doesn't involve interacting with anyone), not wanting others to be angry/upset with him (people don’t get angry or upset with him for expressing not wanting to do something but he often thinks others are or will be angry/upset with him)…

I need to try to book a GP appointment tomorrow. I am exhausted. I could crawl into bed and hide.

Hugs to you @Lougle . It sounds like having a giant toddler.
I find the language of "nervous system disorder" deeply unhelpful for developmental/specific learning disorders. My DS has a nervous system disorder - epilepsy. Separately, he has 2 1/2 specific learning disorders, ADHD, DCD and traits of ASD. No amount of therapy, practice and parenting will change his epilepsy. His behaviour, motor skills and social skills are light years ahead of what they were thanks to all of these.
I find parents on some disability parenting groups use "nervous system disorder" to imply "my child will never be able to do that".

I don’t think it is as simple as that.

No amount of therapy, practice or parenting with cure epilepsy, but for some it can make a difference. For example, for some, lack of sleep lowers seizure threshold. For others, DC are more likely to have seizures with certain activities.

No amount of therapy, practice or parenting with cure ASD, ADHD, etc. but some things can help make a difference. Although for some DC they “will never be able to do that” regardless of what therapy, practice or parenting happens.

I'm sorry you're so exhausted @ExistingonCoffee - please do get that GP appointment. You've been doing this a long time so that fact that you're struggling means something is awry, even if it is 'just' burn out/exhaustion.

I don't know how we'd even get from here (no provision at all, not even 20 minutes) to what you describe. I said in the CPA meeting that it didn't even feel like we were at the beginning of a long, uphill path with DD1. It feels as if we are spinning around, blindfolded, trying to find the path. The psychologist agreed.

We have the EP on Tuesday, and LD nurse on Wednesday. We might have the psychologist if we can get an appointment that works, but the suggested appointment clashes with another appointment at the same place that I need to take DM to.

DD2 has her Gastroenterology follow up tomorrow.

I didnt say disorder @drspouse I said issue and PDA is connected to the nervous system. More information is available on the PDA Society website. I know some don't recognise PDA but since we have parented in this way for the last eight years, it has hugely helped DS to feel good about himself and be able to access education and social settings. I would never use it as a reason for him to 'never be able to do something' and I would never say never! Low demand approaches work, that's all, and he makes more progress with less demand.

@Lougle I hope gastro goes well.

To go from no provision to what I describe would take time. I’m not talking about jumping in with hours and hours, things may get worse before they get better and progress wouldn’t be linear, but I think it is something that is going to be essential for DD1, for you and for the rest of the family.

You’re right. At least ruling other things out will mean I will know I need to off-load some things (not sure what!) even if only in the short term. I have a lot on, but there have been points in the past where I have had more on my plate. Maybe it is a cumulative effect.

@ExistingonCoffee the last 10 years have been exhaustion by a thousand tiny cuts for me and you have many more plates to spin than I do. Parents take a day on the sofa/in bed following a child’s stay in hospital, they call in sick to work and people rally at the shock of it all. You are doing the extreme daily version of life’s difficult occurrences. @Lougle you too! I don’t know the answer but I see you both. It’s the word exhaustion used correctly not a bit of a busy week.

@Lougle can you put strategies on hold for DD1 and have a few weeks just getting through the days accepting all and any help from your parents for DD1. Letting her sleep at 6.15 so that you can regain some strength. It’s not stopping it’s pausing.

@ElizabethBennetsFineEyes PDA is very much connected to DD’s nervous system. The bladder demanding a wee counts towards the cumulative.

I don't know @HedgehogsAgree . The trouble is that whatever boundaries are set, DD1 erodes them. We used to say 8.30pm for bed. That rolled back to 8pm. Then 7.45pm, then 7.30pm. If we let her go to bed at 6.15pm, we might never get her back to a more appropriate time.

@Lougle what time does DD1 wake in the morning? Does she wake for long periods &/or frequently during the night?

The bladder demanding a wee

@HedgehogsAgree DS3 doesn’t have PDA, but he struggles with this. He does ‘the dance’ and needs prompting.

In general, when PDA &/or low demand is discussed, I think some people forget demand does not mean no demand. There will always be demands.

@Lougle it’s a horrible trap holding the line, so true that’s once it’s shifted there is no guarantee of return. When you went to France your girls got through it without you. Could you and DH dare ask for support for a less obviously urgent night or two away to talk and rest?

I have read the information on the PDA society website, but it didn’t help me work out how that translates into SEN for the transition to mainstream secondary.

Unfortunately, DD1 has deteriorated and is rarely coping for more than 30 minutes-1 hour with my parents now. She desperately wants to be with them and spends ages asking me to let her stay, etc., but as soon as we say yes, she gets overwhelmed and needs to come home.

Oh @Lougle poor DD1 and you are really in the thick of it. It’s a lot when family can’t get access to help no wonder you feel how you do.

@ExistingonCoffee we think so... She says she wakes up for ages in the night and that she gets very little sleep. She says that she wakes in the early hours then goes back to sleep. It's hard to know what's true. The psychiatrist suggested getting her a sleep band to monitor. We can't do anything she's very aware of because it changes the picture. She's very suggestible so if we ask direct questions it exaggerates the reality. However, at the same time, she told the physio very clearly that her left side didn't hurt and when she was asked about sensation, she said it was fine on both sides. So she's not lying, ever, I don't think. She's just getting a distorted view of the facts due to mental distress and anxiety.

It sounds exhausting (and a bit familiar) @Lougle . As far as PAs etc go I’d do the assessment, get the time and then use only what works for dd. Thats what I did for ds anyway. His PA taking him to the gym is a great success but we did a step before (supported by SS) through an agency called teaching for independence (I assume there are similar people with their own name near you). The hunger with AEDs is very challenging. Timed drinks helps, and helps hydration too. A drink before and after every meal. Perhaps a drink and a biscuit at 11, and mid afternoon. Evening drink with Dad (so grown up). That gives a fuller tummy and “events” throughout the day that involve putting things in your mouth. If she can cope with chewing gum that fills a gap (and if sugarless is really good for your teeth.)
More roughage combined with all that liquid will help her feel fuller and keep things moving which is key for ds’s mood/epilepsy control.
Exercise is always difficult especially with exhausted ones but helps in so many ways.

Does she take melatonin @Lougle? DS is on long acting and that might help with night waking?

Yes, she's been put up to 6mg.

I'm not sure how much she weighs but my DS is about 50kg and his is 4mg. Maybe it's not enough/not long acting enough? (I'm not sure how the release profiles vary - I know a bit more about ADHD slow release profiles).

@Lougle a few thoughts. Don’t feel as though you have to answer here. Has DD1 ever tried anything else as well as/instead of melatonin to aid sleep? Has she had a (relatively recent) sleep study? Does DD1 go to the toilet during the night? Have you thought about a camera to capture a picture of when DD1 is/is not asleep? (Some might have a shocked response to this suggestion but lots of families with disabled young people use cameras, including in bedrooms, for one thing or another.)

No, nothing else. Never had a sleep study. I've mentioned that it's impossible to tell what the objective situation is without a camera but nobody said 'good idea', so I haven't done it.

I ordered a Withings sleep analyzer today. I have no idea if it's any good. I am skeptical but reviews are generally good and it's a start. The psychiatrist suggested a wearable device but I think that would be problematic in terms of DD1's heightened awareness and compliance.

We use a camera for DS so we can work out if he's having a fit or just talking in his sleep. In theory he knows it's there but he's probably forgotten.

@Lougle I would request a referral for a sleep study and discuss trying something else to aid sleep. The latter might need to wait until other medication changes are stable.

We use cameras. I would just get one rather than waiting for someone to agree that it is a good idea.

Yeah, we didn't ask anyone - we just got one. We have one in the play room too as that's where DS mainly watches TV or games if he isn't with us. When a PA comes over we warn them it's there.

I have a question - on the annoying EP report, he said "DS needs to gain acceptance of his learning disability". I mean, he has knowledge and acceptance of his epilepsy. He told us the other day he'd like to work at the cinema because he can walk there, and he knows he isn't able to drive. I can actually see him working at the cinema (lower volume of customers than in some of his other favourite establishments, you get to see the films, he's already very tidy, I've just taught him to mop up though he could do with some work on that!).

But what do you do to help your child "gain acceptance of their learning disability"? Tell them "you aren't very bright so you won't be going to university"? The most they seem to be able to say is he has a "mild/borderline learning disability" anyway, and I think it's mainly language/social communication anyway so it would be appropriate to help him to advocate for himself along the lines of "I don't always understand instructions first time, please check if I'm following". But what on earth would "accepting your learning disability" look like.

And on a related note - DD knows that DH and I both went to university, all the secondary schools bang on about how many former pupils went to university. Given her progress, she's unlikely to go, but this is touted as the be all and end all by some teachers (not as many at her school, but some). I actually feel like she'd enjoy the social side. Given how outdoorsy she is, I'm trying to work out the best routes for an outdoor instructor/ski instructor/travel rep in that kind of area, as those do seem like they give the whole "away from home but with some support" thing that university does. But I am also pushing the idea that "you can go to college and learn a job like making something" which is another strength of hers. I hate to burst her bubble and I'd kind of like to know how the school navigates this - without totally ruining children's self esteem!

We do similar @drspouse. All staff working in our house are aware of the cameras.

The report should cover provision as well. It depends on the wider context. On its own that sentence doesn’t provide enough information. For example, some will need MH input to facilitate acceptance. Others might need to meet and interact with others with an LD and have a suitable peer group…