Sometimes having a SN child is just rubbish

[MooMummyMoo]

A self indulgent moan really. Just fed up. I know I should find the whole situation fulfilling and I should be telling people how much my wonderful SN DD teaches me everyday etc etc. but frankly, sometimes it's just rubbish and I hate it.

Earlier I left my DD with a book to look through - one of her favourites. When I came back she has shredded (and eaten a fair bit) of one page. This isn't hugely unusual but I find massively annoying. I shout, she just laughs, I get more angry.

She then later pulls her sisters hair. Also not uncommon but I am still simmering from before.

And now she is sat in a baby's bib (aged 4) as she is sitting spitting/dribbling and won't stop.

I hate days like this. I know all children can get to you at times but for some reason the SN element makes it all the more harder to deal with.

As I say, I am just moaning, but I need to let off steam somewhere and here is the only place I can do it.

Sadly I think it's some sort of pigment, rather than actual paint. It actually looks a bit like when bleach removes the colour from navy clothing, but it's actually the paint that has sunk into the fibres of the blazer.

He's 12 ... going on 4 this week.

I have all this to come. Dd2 starts school in sept. Luckily, we have some old uniforms from dd1, I think we will need loads! She loves messy stuff.

Lots of this sounds familiar:ripped books, food everywhere, laughing when you tell her off, love the phrase being psychic about what she might do! I love dd2 to bits and she can be very charming, but omg life would be easier if she didn't have ds... it would also be easier if we also got the help we needed all the time too.

Moose - the lack of uniform is one of the things that made me do a little internal dance of glee when I first discovered the existence of DS1's school. So far, he's ruined several items of clothing with glue that doesn't wash out (they do DT twice a week, even in primary) but it's £10 joggers and £4 in the sale t-shirts - stuff that doesn't break the bank and that he can still wear for bumming around the house, even with sticky white blobs all over.

And it's possibly that it is poster paint. This was the first time he wore this polo shirt, last September.
twitter.com/ouryve/status/387244836468031488/photo/1

Secondary uniform is ££s anyway, but of course he's in an out of area indie, which means not only is the uniform even more expensive, there are no local shops to buy it from and you can't buy it online either. Every time we have to replace an item we have an hour's car journey to get to the blooming shop.

That said, I don' think no uniform would work for ds either, as he has started getting ridiculously stressed about certain things he will and won't wear and whether others will approve. Tops must be no stripes, no 80/90s band tshirts, obviously, no bright colours, very few that have any sort of logo or image on and then of course there's the 'all trousers must have a soft knitted waistband, but can't look babyish' rule. He doesn't do shorts either, although will wear soft/jersey ones in the house. Overall I think a uniform is probably easier, if more expensive.

Can I join I've just done a trip round a zoology museum with ds in 90 degree heat I've come in to dd2 having a huge meltdown ! Dp is lying on the sofa dozing he may get a magnum stick up the nose

I'm so glad we've evaded the heat up here. It's even 5C cooler here than at DS1's school, today!

Moose - DS1 likes the joggers that Next do with the elasticated ankles. Thankfully, he's not fussy about t-shirts, so long as they're not boring. He's even back to accepting monkeys!

Ouryve it's unbearable I get migraines in thundery weather as well, moose total sympathy with the uniform

Can I join in and have a moan please? My dd is 14 and has had 'Enrichment week' this week. It doesn't bloody enrich me.

Meltdowns every morning because of the change in routine, what to wear, and then there are the 'what ifs'! Which I can never answer to her satisfaction.

Plus my sister is in hospital and dd is stressed about that but reverts to her default emotion, anger. I just don't have space in my head for it all. I feel like a tiny, tiny person that no one can hear or see.

I do not see Aspergers as much of a gift this week.

Moose, I feel tired just reading all that....you must be exhausted.

I know it's all a bit "touchy-feely" and it's hard to believe that it would make a difference but for me this works....

I keep an evening diary/gratitude list where I write down minimum 3 good things that have happened in the day (free parking space, spontaneous hug from DD1 etc).

Then I have mindfulness stuff for me DS. Started off with free online podcasts and have progressed to buying CDs.

It does not work with DD1..she refuses to even try (prob because she sees DS doing it). But DS is noticeably calmer and listens better when I do it (currently on the long finger but I will kick myself back into it).

Hi frizz... that's a long time to be on TLP? continuously, without a break?
Why is your OT discharging? is it on the basis that he is cured?????

Ooo interested by this Redoubtable. Are your three good things each day SN related specifically or just general? Eg would I have to think of things like...DD only threw two meals on the floor today instead of three, etc etc. or could it be Eg I have a big cold bottle white wine waiting for me this evening.

Really interested in this as an idea

Didn't explain that very well Redoubtable.

He had his first round in 2013 plus one maintenance, after a 5 week break, they did the same 12 week program. Then he kept a CD just for top up, until 6wks ago he has had nothing for approx 5mths.

They decided for this round to concentrate on a different area, that was problematic but not severe enough to meet their criteria for support (spacial awareness) It had a real negative impact, shouting, anxious, hyper noise sensitivity (when that had improved a lot), lots of crying, concentration was gone, all the gains we had from the first time were gone. I stopped them two weeks ago and said they needed to revert to some CDs he used last time - which they did, and he's getting better now.

Now, they are saying they're discharging him as yes, you've guessed it he's cured! So no maintenance and if I want to do it, I have to buy the CD's myself.

Moo....no, not SN related. This is 3 goods things for me, just me

So, the compliment on a job done well at work, the parking space outside the library when I'm going with DC, the new recipe I mastered, the basket of ironing I finished (that's a win in my world)

If you look up the positivity ratio, there is solid research behind the concept that we need 3:1 positive to negative on a day-to-day basis and 5:1 when we are under stress. Pay attention to the positive to "drown out" the negative.

I know it works as when I am calmer, I deal with DC better and, even more importantly, they feel it and are calmer or quicker to bounce back from melt-downs.

I try very hard to do meditation most mornings, even for 5 minutes and that def helps too. I like these which I've downloaded and listen to on my phone.

frizz that's a bit cr*p really.

If they have identified an area that, when targeted in TLP, really causes disorganisation, then that is where therapy is indicated

How's his core strength? It's really hard to have good spatial awareness without adequate sound processing and a solidish core

Core is shite, been paying for swimming lessons for 2 years to strengthen and it has a bit, but still way off. Arms like spaghetti too

Thinking of applying for a grant and getting private OT, so I can get strengthening exercise regime in place and make sure I'm doing it right. And then use any money left over to buy TLP myself, I've heard it's about £750

that's a lot of moolah.

Great demos of core strengthening exercises here. At a minimum, get him doing Superman and prone flexion. Once he has those, then you would move on to bilateral +/_ reciprocal movement.

Swimming wont target core if it's that weak; he needs strength more proximally. I treated a child recently who has gone from being able to do 25m to 80m in a few weeks.

Would you try working on core over summer...I set challenges for children where I measure their time when they come in and they love seeing the chart increase over the weeks...very motivating!

It's worth a shot..but needs to be done every day. 3-4 minutes, first thing. Done.

I can do that I'll be doing TLP for at least half of the summer. Is it on one of the demos?

Blimey I'm even invisible on this thread!

Sorry Thorn we've just hijacked the thread

No, no I shouldn't have posted that I'm so sorry and embarrassed!

Thorn, you're not invisible. I completely hear what you are saying. It's just bloody hard work isn't it. And it's shit sometimes. Your comment re the aspergers not being a gift really stood out to me, people say such stupid things and that is right up there with the people that say we are special parents, chosen in some way. All a load of bull.

Don't feel you're invisible Thorn. You are not.

And don't be embarrassed. I am for not replying sooner. I read your post and agreed with it so wholeheartedly it somehow didn't need a reply! Stupid of me and I should have engaged my brain out of first gear... (I blame the kids )

Thanks Moo, that's just what I needed to hear.

People do spout some rubbish don't they? It's hard to speak out about these things, this thread is great, thanks for being so honest.

Don't be embarrassed Thorn I did hijack the thread.

And I have never been able to see the gift in ASD and the person it makes him. Sometimes I get a little glimpse of him where maybe for a few minutes sometimes longer, it seems that he's not under the restraints of his ASD. I know I should see all the positives of those moments, but all I see is how the ASD limits him.
If I could get a hold of ASD, I'd nuke it and then drop it into a volcano!