The OS Doorstep - a helpful and supportive thread in these tough times

stiltwalker

Huge (but very gentle) hugs kidcat - please try not to blame yourself (and yes - I know how hard an ask that is!) It is summer holidays and I don't think this weather is helping matters. We had the first ever real meltdown from DD on Saturday - she's still sporting the cracking bruise on her chin that she gave herself with her own knee she was bucking and thrashing around that badly.

Picked up DS's single buggy from wheelchair services today then went to our group and then on to PILs. Also had SALT this morning and agreed DD's new therapist - we're having the augmentive specialist one as we have decided that this is probably the route we will need to go down. Will be looking into communication devices both low and hi tech - feel kind of good about this as it will hopefully allow DD to communicate with more people, more easily but it is yet another thing to get to grips with - oh well I'm sure we will manage.

Take care all - X

kidcat

stiltwalker - there are so many different communication devices out there now, I dont envy you having to sort through the choices good luck though.

EstherH

KIDKAT, so sorry you are having such a rough time at the moment. I don't have any experience so can't really add anything helpful but from seeing friends with children who are disabled or learning difficulties realise how it is 24/7 full on and such hard work. I'm amazed at how you keep going.
Esther x

twofishes

Echoing what Esther said, take care of yourself Kidcat, you and stiltwalker and other parents of disabled children are real heroes.

kidcat

morning toughies - wow its quiet today, we are having a really lazy day today and am planning on doing nothing at all. OH has taken DS9 to have glasses repaired, but I havent even got dressed yet

EstherH

Hi KIDKAT, I think that's very well deserved. Enjoy. Esther x

CRANKY40

From Kidkat's description I managed to guess exactly where they had visited and I have to say that I found the experience slightly unnerving when we went last year, so no wonder her son tried to run away. I kept tight hold of my son and pushed my way through which isn't like me at all. I like to show that we both have manners and use them.

Just been to Asd@ which was very busy. Must remember not to go on a Wednesday morning in future!

Hugs to you all

kezlou

((hugs)) Kidcat - ouch hope your back feeling slightly better today. Just have a chill out today, let ds9 sleep on the sofa and put some films on.

Have to admit we've been days like that luckily they haven't turned out violent. Just the boys constantly nagging and being demanding.
Really it was my fault because i hadn't prepared them properly and i didn't know of OH was going there or not.

Went up towards seahouses on Sunday for OH's race, had all planned for camping etc. The the rain came and everything got cancelled because the whole placed was flooding out. Cue two upset boys and they dad, who i'm now even more convinced on the spectrum as i had to deal with three meltdowns :eek:. Luckily i had the the bright idea of going to wet n wild cue three very excited peeps who thought i was the best person on earth :rotfl:
Six hours of total entertainment for three hyper people. It was well worth the £40 and can fully recommend it.

So i sat in peace reading with a few cuppas, wish i could have gone but i still have my boot oh yes, the fashion accessory that loves me!:o


We were at Saltburn yesterday after the hospital, we all loved it. We met up with a rally good old friends and her two children and spent all day mucking about. Then went and at a pub called The Ship, its reasonable priced but the portions are HUGE. The starters were big too.

The children are at playscheme today till 3pm, so spending my day sorting tax credits and things out. Been trying to contact them since this morning.

ginnyknit

Kidcat and Stilty I think you are both amazing Mums like my DD but I often find meltdowns are caused by outside forces and sometimes your brain doesnt snap onto the problem as fast as other times. So you just have to start a new day and log it all in your memory banks.

Dgs came to see me yesterday morning with my birthday presents and hadnt eaten any brekkie. I just asked if he wanted toast and got 2 slices of bread out, he slapped his face and went Nooo!( always does this) So I made a jam butty and cut it into chunks, he asked me to open the cutlery drawer and promptly got a knife and fork, sat down and ate the butty as if it were a roast dinner :T This was the first time he had used a full size knife and fork, first time ever with a knife - this boy suprises us all the time but my goodness its hard work. Discovered recently he hates electric doors so thats another to add to the list and avoid like the plague, but he loves air travel ( am guessing its the quiet and coccoon like sensation).

Sat waiting for my AF order, space cleared in pantry and hoping for lots of empty boxes to pack stuff away in. Then a trip to the CS is needed to donate, not buy... note to self take no cash ..

FairyPrincessk

Hi all!

I've been trying to catch up since I got back yesterday, but a lot has happened. Hugs to all who need them, particularly those of you struggling to help your children cope.

Ginnyknit--I too love air travel--in particular I like how orderly all of the processes are. I grew up travelling a lot and I like that there will be signs telling me where to go in the airport etc. Perhaps this is some of the appeal?

My visit with my family was nice, although difficult in a number of ways. My grandmother has some health issues, some of which seem to be affecting her in ways that make her unpleasant to spend time with. It makes me quite sad, particularly because I think she is being over-medicated and might be able to address some of the issues better in other ways. If she got help for her depression, I think she would snap at people less and possibly her friends would visit more often and she would be less lonely. But, she has been seeing the same doctor since my mum was a child, and he seems to give her strong medication for every little thing. She is taking strong pain killers for her back, when there is a much simpler solution to her problem related to diet, but she refuses to eat any of the healthy things prepared for her and instead snacks on crisps and chocolate and then simply takes more medication which in turn makes her snappy. My uncle recently got her to see another doctor who reduced her medications substantially, but she just went back to her old one to get put back on them. I think mental health is probably playing a big role in it, but she snaps at anyone who tries to help and has alienated many people around her. She is staying with my parents in Europe for six weeks, so my visit was timed in the middle. I think my mum, especially, needed the relief, and my mum said my Uncles seemed relieved she was visiting my mum outside of the U.S. as it gave them some relief. It is a tough situation as we used to be close, but every time I tried to engage with her she was either snapping, manipulative, or playing games on her phone because her medication keeps her zoned out. For the record--she is still very able bodied, and some of her problems are caused by medications that don't agree with her--some of them medications she is taking because she refuses to eat less processed carbohydrates which are causing pain.

Whew. anyway. It is nice to be home and back into my routine. The plants seem to be doing ok, although I think the peppers are getting too much rain. I have two baby courgettes growing and many more flowers. I was worried they wouldn't be pollinated, but I gather the bees have managed.

OH has planned a series of exciting meals for us and he did most of the shop before I got back. I'm so proud of how OS he has become. He even bragged to me that on his short trip to see friends he refused to buy a number of things--a sandwich in the station, a bottle for a friend that was a few quid more expensive in a station supermarket, an oven pizza when he got back etc. and instead made alternative arrangements each time.

Right, I suppose that is enough chatter from me. Hugs to any who need them, and a big warm welcome to any new members who joined while I was away, or any who lurk.