Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

[cupofteaplease]

Thanks to Thumbwitch for inspiring the title of this new thread.

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

Happy six months birthday, darling, darling Beatrice. How well you are doing, you and your mummy and all your family.

Ooh, Happy Birthday Beatrice Primrose

I noticed the primroses were out walking around one of my favourite gardens at the weekend.

• Just in time for your half birthday and for Mother's Day

( Just wondering if you've thought much about the possibility of DH looking after Bea while you returned to work 2 days a week. I don't know if that could be feasible for you or how it would work out financially ? Just a thought x )

6 months already?! Wow! Happy birthday - have some to celebrate and for Mummy! Definitely room for thoughts for your brother too Cup xx

Have a look at www.jessiemay.org.uk - is this the type of help you would like? The links page is excellent too. Jessie May may well know of a similar organisation close to you.

Loved your comment how working is a luxury for parents of children with disabilities - I can relate to that. Instead of working, I go to day classes eg sewing, art .... Which are easier to manage than working. Finding fun time helps.

Happy six month birthday little lady xxxx

Cup, I am so sorry about your brother - it must just feel like a different world to you all at the moment but I will keep everything crossed that his treatment works. I know nothing about it but sounds like from comments on here, that with a bit of luck he has a good chance xx

Your account of the meeting filled me with tears. I am glad he was able to put you at ease for the meeting - I hope Dr Doom learned from him how to deal with patients and their families from him. I'm also glad he was able to see how strong she has been (and continues to be). Did he give you any idea about how her brain will develop from here on in? To me as an outsider, it seems very much like she continually progressing in her development physically and neurologically and I hope with all my heart that it continues for her.

Oh and yay for the weight gain, we'll make a chunker out of her yet

So much news, and so mixed.

But Bea is here, and enjoying life (and food), and you (and we!) are enjoying her - there is much wisdom in your thread title.

Hoping and praying for Good Things in the extended Cup family.

(was CaroleService btw)

Happy half-birthday baby Bea and love to Cup, Bea, the Tea Set and the whole darn dinner service! Squeezed your brother into my thoughts too xxx

Thanks for the lovely wishes, I shall tell my brother that Beatrice's Virtual Aunties and Godmothers are wishing him better! (He will not understand and think I am crazy...)

To answer a few points- Dh asked his work if he could have Tuesdays off. The owner of the company said yes, but it was down to his line manager. His line manager said no, because other workers would be jealous of him having (unpaid!) time off regularly. I told dh to ask him to find one person in the place who would prefer to be in dh's shoes right now...

We are in the process of having a continuing healthcare assessment and being allocated a social worker, but this is just for respite, not childcare. That is what I am finding difficult. PracticallyPerfectnot linked us to jessiemay.org, which looks like a wonderful resource, but is more aimed at respite for those in need. I'm sure the time will come when I am needing respite, but what I am currently looking for is paid childcare. Like other people with 'normal' children can access. Like I used to access. I know I sound like I'm harping on, and I'd hate for it to come accross that I am resentful of having Beatrice in any way, I just don't like injustice, and to me, this feels unjust.

Have you tried phoning nanny agencies? Some nannies work like this and don't all want a 5 day week.

Cup - could you ask your LA if they have a registered CM who is trained in SNs or, if not, would be willing to learn and be able to CM Bea?

Jessie May is great - I fundraise for it.

Maybe this could help

www.childcare.co.uk/search/Childminder/Northamptonshire/Special-Needs-Experience

I see what you mean. How about www.radar.org.uk - they aim to stop discrimination and they have a booklet Children First which looks interesting at the website. My mother and also a friend has continuing health care funding - a heap of paperwork and discussions but worth doing. I hope you find the childcare you need.

I have a dd with PMLD and epilepsy, and work F/T (yep, its been my luxury). We have had an eclectic mix of childminders, nannies and nurseries to look after dd over the years, and touch wood its been great.
Happy to give you more details of how its panned out if you want to PM me. If having a nanny for the teaset is an option then I really recommend a phonecall to Sally at SNAP Childcare - she is fab and highly experienced at matching SN nannies to families with SN.
There are nannies and CMs who will have had experience of looking after children with complex needs.

Sending you (and your DB) lots of positive thoughts.

Firstly, have added your db to my prayers, I hope he gets a proper diagnosis and treatment v soon x

Secondly, how eloquently you have described the neurology visit and whilst the news was not what you wanted to hear and am pleased that he spoke to you with such compassion and grace. Also I echo BB3 and hope Dr Doom has learnt some compassion from him and Bea continues to astound

Finally, on the childcare front can dh not make a formal application under the flexible working rights for parents legislation. If his big boss has agreed it would be difficult for his line manager to refuse? I can understand your frustration, can the hospice recommend someone?

I hope you are thoroughly spoilt on Sunday, you deserve it xxxx

Yes, Happy Mother's Day cup - I'm sure your girls will make it a special day.

That's a good idea carrotcake for DH to try again for flexible working slightly more formally - write to big boss and ask for flexible concession in view of exceptional circumstances (or something along those lines) Then you'd only have to find a carer for Bea for the one other day a week and you could go back to teaching 2 days a week ?

Happy 6 months Bea xx

Wow, happy six month birthday Beatrice - you are a little superstar who is obviously thriving on the love given by all the cup family...you go girl.....

Cup, do you know that you can apply for a Statement of Special Educational Needs? what I hear you say she is only 6 months old...

If you apply for a child under two years then a formal assessment has to take place(and it is more health needs based than educational as it is specifically for children with more complex needs-which I am sure you won't mind me thinking that is a 'category' you would place the wonderful Beatrice in), I know of one person who applied before there dd was 2 and did get a statement which meant that there dd was supported in a nursery situation(I haven't seen them for a while but maybe at the end of the month? would you like me to share info and get them to get in touch with you directly?)

If you get chance have a look at www.cafamily.org.uk/index.php?module=newsmodule&action=view&id=806&src=@random489afd7cd606f

Hope that helps, have a lovely weekend xx

cup. In a bizarre way - that only parents of children with special needs will understand - going out to work is respite. Respite is a 'break from caring' and being able to go out to work is exactly that. It gives you time to do something else and maintain your independence by earning some money (depending on childcare costs).
Your continuing care assessment should take into account time you need away from the lovely Bea. Yes it needs to provide overnight respite - which you already get through the hospice, and it may also provide care in your home to enable you to take time out with your DH and your other 2 beautiful girls, but an important part of your life is returning to work.
Can you find out how much your childcare would cost if you went back to work and you were putting a child into 'ordinary' childcare. Then find out what it would cost for specialist nursing care for the same number of hours. Deduct one from the other and tell the PCT that you need that amount in Direct payments to cover your working hours. Its worth a try - if you don't ask then you don't get!!!!
Also have a look at this website and see if there is any advice they can give you - they also have a helpline
www.workingfamilies.org.uk/articles/parents-and-carers/caring-for-disabled-adults-and-children

Wishing you a peaceful Mother's Day, cup x

Hope you enjoy your first mothers day with Bea and that she spoils you with lots of smiles and chatting! Have fun with your three beautiful girls!
Also sending best wishes to your brother and to everyone else in the tea set.

Happy Mother's Day Cup. Hope you and your family are having a peaceful time. x

Happy Mother's Day Cup xxx

Happy Mother's Day and six month birthday to the lovely Bea :)

I agree with bigblue - I don't particularly like my job these days - largely because I have basically given up on "getting on" but it is respite of a sort. I joke that I go for a rest!!

And happy half birthday Bea!!