So many issues to post about.. Where to start?

[DJAngel]

Apologies! This is a long 'un ..

Not been on for a while but really struggling in the holidays and in need of a few kind words! No school for ds1 (NT)age 5.5, and dd2 age 3.5 (SN- Tuberous Sclerosis, GDD , Epilepsy etc) who's not having her two mornings a week at nursery so juggling both of their needs - very tiring.

Finding dd2 so hard to deal with. She is in a very destructive stage - breaking/ trashing lots of stuff and seems to be entering a real tantrum stage too. If everything is not 100% perfect begins to wail and scream. Problem is for her 'perfection' is either being in the swimming pool or watching favourite tv prog over and over, currently Kerwhizz from CBeebies. Having to keep getting it on demand but there's only one episode available for a week til it changes.. OMG I lose the will to live after about 8 times, and if you try and slip away well that's not perfection!! And she signs 'more' or 'again' so beautifully I can't refuse her - and face the wailing!

Trying to leave the house she has a knack of creating a disaster.. I was out when poor DH found her in garden sitting in mud just as about to go out, while dh upstairs to get new nappy and clothes she did a poo and carefully lined (luckily) half the pellet poos on tv cabinet, then while DH cleaning this up grabbed ds1 juice and poured all over kitchen floor then while clearing up unrolled whole loo roll.. Most days are like this these days.. If you don't laugh you'd cry..

She is a runner as well so going out anywhere other than the pool that she loves ( couple of times a week is enough for the rest of us!) is pretty grim. Great family days out just don't exist for us.. We've got 2 weeks off work from friday but couldn't face a holiday as be a waste of money. Any holiday ideas for our situation greatly appreciated.

I long for the day when she won't wander off/ run away without a backward glance - she waddles unsteadily - but quite quickly (!) usually just as we sit down for.. the picnic, or stop to look at birds/monkeys/toys..
She never stops. I just wish day to day life with her was calmer.. and that she was happier.

There are more serious worrying things which I may do another post about another time but I can't really think about that too much today..

I absolutely adore her and she is gorgeous but I so have that groundhog day feeling everyday at the moment and can't believe I'm wishing away the holidays. I so wanted to spend some time all together and particularly with my son. He gets so shortchanged bless him and he's so good about it. Been trying where we can to split up with the kids and have one each but ds1 often with dad and I miss spending time with him. DD always wants mum.

Pretty sleep deprived too and know we should be thinking about getting a bed for dd2 as her feet are nearly touching the bottom of the cot but I can't face the idea of her being let loose in the house or even her room while I might be asleep.. Send shivers down my spine..What she could get up to.. Any ideas/ experiences of this?

Anyway what a rant.. Thanks for sticking with it.. Hope it doesn't sound too pathetic.. I'm just so exhausted by it all.. Realise others have things much worse and more serious but I already feel better for having had a moan to people who understand the relentless nature of family life!!

www.mumsnet.com/Talk/special_needs/805745-holiday-home-in-Wales

Have a think aboout getting a high sided bed-Bakare or Theraposture or Safe Spaces are all suitable but quite expensive. Sme authorities provide beds, others dont-you have to through the funding route-lots of charities fund them if you ask.

Forgot to say-sorry to hear you are having a tough time-Your days sound sooo like mine!!! I hate the school hols-ds1 Angelman Syndrome is so bored and out of routine, I have a truly obnoxious 12 yo dd, ds2 is 3 and dd2 is 2! Dh was made redundant at the start of the hols after working for 3 months after being unemployed for 3 years because he broke his back at work.

Do you get any respite? Home start, direct payments etc? Might be worth asking social Services for a carers asessment-your needs are as important as your dc's.

Hope you have a better day tommorrow!!

Hi DJ angel,

So sorry to hear about your summer. I have a little boy who also has tuberous sclerosis. He is 4.2 and has epilepsy/SLD/Autism. He is lovely and we are very lucky to have him but like yours requires one to one at all times and has challenging behaviours. We have just started receiving direct payments for respite care and although we are still setting things up, it's already made such a difference, so definitely worth trying.

Hope your days get better....

Thanks MMM for the bed link. Will check it out. Oh gosh I don't know how you're coping with 4 kids!! It's always a bit scary being seriously outnumbered by kids I feel! I often have my sisters two when she works and it completely wipes me out on those days..
So Respect to you!

Thanks for the advice re possibility of respite or homestart sort of thing. We don't get any of that yet, but haven't self referred to social services so probably need to get going on that eventually. Glad I'm not the only one living on this strange planet!

Hi izzie123

I haven't met anyone else on this forum yet with a child with TS yet so hello!
I think we are thinking about the possibilty of respite for some point in the future but not quite ready for that yet..Your ds is a year older that our dd2.And also Stevie's deterioration in behaviour is relatively recent. It's like she 's started the worst terrible twos with a vengeance! Bit of a shock for us coz ds1 sailed through that period of development with barely a stamped foot in sight!

If your son is 4.2 - that means you must be at the tail end of the statementing process? How was it and have you got what you need do you think?
Whereabouts are you in the uk?

Lots of questions..

Anyway good to hear from you and I hope you manage to get someone really nice with the direct payments to give you a well earned break.

I hope we'll speak again.

Hi DJAngel,

sorry for not replying sooner. We went through the statementing last year. As he was going to a special school that wasn't the issue but the amount of speech and language therapy was. After much discussions we were able to up the hours but have been fighting with the LEA for the last 3 months as it appears he hasn't received the SLAT agreed. Armed yourself with as much info as possible. It's more difficult to change things later on so if you can get all the important things you are after in the first statement I think it is easier.
We are based in the south east. How about you? Do you go to the TSA events?

Good luck with the rest of the summer!

Hi izzie123

We haven't been to any of the TSA events as dd2 not a good traveller - and we too are in the south east, and lots of stuff you have a couple of hours in the car but we did consider the centre parcs days.. Have you been on any?

We did go to the TS Conference Parent Day last September in Brighton ( not far from us) which was very interesting. We were 6 months after diagnosis then so was all quite daunting then, well it still is but in a different way. Did you make it to that?

Thanks for the tip about the statementing. We need to get some ideas about what we want/need fully formed so we know what dd needs to be provided by the LEA..

I'm sure will be posting on this forum to get further help as the time goes on with it..

ds1 had horrid tummy bug at the weekend but today managed a better day as dh and i both off work for a couple of weeks. Even managed a dip in the sea! It was lovely..

Hope you manage to win your battle with the LEA over SALT. It's so important and yet so scarce everywhere! Hope it comes through for this term..

Good to hear back from you. Be good to be in touch. Happy for you to contact me if you feel like a total TS chat!

Would be great to get in touch. Do you post on the TS website forum?
We did attend the Conference...

I have posted on the TS website but not under this name.. Not for ages though. I posted a few times when dd was first diagnosed and at times when having bad time. I'm melodymum on there i think, without checking, coz had a time of posting on epilepsy forum too under that name..
TS website is pretty quiet though as there are so few of us so don't post much these days and I don't find it a very user friendly forum format wise.. Doesn't take a lot to confuse me these days!
I may have met you at the conference as met a few parents but can't place you..
Anyway.. off to enjoy a bit of time with no kids. dh has taken kids off for a couple of hours swimming so going to listen to rest of womens hour! Have a good day..