Ds1's community nurse is worried about ME......

[proudestmummyever]

Hi, my ds1 is 2 and a half, and has a rare genetic disorder, resulting in various problems.

His nurse was in this morning and suddenly turned to me and said to me "You're not ok, are u?"

I couldn't believe she knew how I was feeling, I ended up in tears, cos I am just not coping mentally with the whole SN thing, and accepting things, do we all feel like this?

Yes we do, we are undergoing diagnosis process for my DD and I keep bursting into tears, had a good blub on the health visitor last week, who said she would be more worried if I wasn't crying.

Got upset yesterday too, seems like it all comes out and then you accept things slightly more and keep improving.

I wouldn't underestimate how tiring it all is either, do you get time to yourself?

Thanx FangedGhoul, love the name, it is soo hard isn't it?

Xpost FangedGhoul...(hblush)

No don't get time to myself

It is hard but I hope you will start to feel better....do you have support?

The reason things are getting easier for me is that I have had a lot of support/people to talk to, which has really helped.

I think it's a process we have to go through and eventually ends in acceptance, but it is painful.

Other thing that really helps (thanks to Riven for this one) is not Googling too much. I can be feeling perfectly fine but start looking things up and end up crying, I think sometimes you can know too much!!!

Can you get any respite care? We are being assessed for this, I doubt it will be very often but it will help.

Do you have a social worker? The community paediatrician could see I was having a hard time (understatement) so referred me to them for an assessment (I think you are in Scotland as well, it's called a Section 23 assessment) to see what support/respite can be provided.

Hey I do have support yeah,and a social worker. I get 4 hours a mnth respite, but the nurse said today she is gonna try get 2 hours a week instead of 2 hours a fortnight, Yeh I am in Scotland! Falkirk, where are u?

I TOTALLY agree with u on googling things, not a good idea, believe me I have sat and done this numerous times

What is wrong with yr dd, if u don't mind me asking that is....x

That 2 hours would help loads, I hope you get it!

I am in Edinburgh.

Not sure what is wrong with DD (3) She has hypotonia/hypermobility, developmental delays and is probably ASD too. Awaiting blood tests for chromosome disorders/ASD assessment.

she is also extremely hyperactive...

Yr in Edinburgh then? Yeah it would help loads!!

God, yr dd sounds like Jack, he has hypotonia, hypermobility, dev delay in all areas and severe epilepsy and his is a chromosome disorder, and possibly autistic, but too youg for diagnosis apparently

I find it helps lots to get out and about, just walked for a couple of hours with her in buggy and feel so much brighter, and she enjoyed it too.

Yes, it's physically hard work and mentally draining isn't it...

Jack is hyper too, won't sit still , terrible sleeper at night too

It does help gettig out, but it's pushing myself to go out, can yr dd walk yet? Jack can't, or talk, or even sit himself

Yes, she could walk just after 2, she still can't climb stairs and trips over a lot.

It is hard when they can't talk and tell you what is up.