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Here are some suggested organisations that offer expert advice on SN.

How do you get through...

(38 Posts)
sarah293 Wed 09-Jul-08 12:05:20

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Widemouthfrog Wed 09-Jul-08 12:23:22

I can't claim to understand the difficulties of raising your lovely DD, because we cope with very different difficulties. I do understand that feeling of being so low and exhausted that you don't know how you are going to carry on. It takes courage just to have written it down.

A big hug - I hope some other mumsnetters have some advice -I just wanted to let you know someone is thinking of you, and give you a bump!

2shoes Wed 09-Jul-08 12:32:00

Hopefully it will get easier. once she is in full time school. I found the first 3 years untill dd started her sn school very hard. but once she got into the system life did get easier.
do you get any respite?

FioFio Wed 09-Jul-08 13:04:03

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Romy7 Wed 09-Jul-08 14:27:14

start with practicalities and box up the emotion as best you can for a day or two whilst you bunch your panties and force people to provide help and support. i know you're not getting much in the way of respite/ dps or whatever (saw a cleaning post the other day) so get on the phone to social services and demand they come out and update both yours (carers) and dd's needs assessments. not sure when last was done? cry on the phone, tell them you are at the end of your tether, and might need emergency respite if they can't get their act together to support you more than they are doing already. the sad fact is that you will find it more and more difficult unless they pull their weight.
do you have all the hoists etc in place that you need? (again, being ball-breakingly honest - she's not going to get any lighter etc etc) ask ss ot to come out and do a full assessment to see if there are any other ways to make life easier for you and dd in the home. have you got dfg etc sorted? don't want to do mad stalker thing and track your posts - sorry!
go to gp - i'm not an anti-d's advocate, but do believe that in some cases they can take the edge off for long enough to get you back to 'coping' - gp needs to arrange counselling assessment to see if you/ family would benefit.
contact your local carers association - although they are mostly geared around OAPs, they may know routes to support. contact your local volunteer service - they may know of a local group that might be able to provide some practical help.
used family fund? crossroads?

once you've done all the 'practical stuff' give yourself a week where you take all the pressure off - cancel all your physio/OT whatever, tell them you're taking a therapy holiday. once in a while you need a break from listening to other people prod your daughter. timetable it carefully, mind!

do you have any RL contact with any other families with disabled children? i think you are doing ms? we've got a local group which helps, but i do think ms kids and families can be under an additional amount of stress as singletons (that's not a criticism btw, just fact - it's a bit lonelier) and it's a bee in my particular bonnet - sometimes the opportunities for disabled kids/ families only get pushed out through the special schools, so it might be worth contacting the council and asking if you can get on the extended schools mailing list or whatever, so that you are aware of everything that is happening.

and really do take time for yourself, however difficult it is to organise.

i've seen you pop up on special kids - do you go to any of their meet-ups? some mums are coping in similar circumstances who might be more use than i am...

sending a virtual hug - everyone wobbles from time to time - take a deep breath.

sarah293 Wed 09-Jul-08 17:18:41

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TotalChaos Wed 09-Jul-08 17:30:00

I've not got your problems to deal with so can't really claim to offer any useful advice, other than to say sorry that things are so tough, and I hope that you feel a little better once DD starts school in September.

are you anywhere near SureStart or a Children's Centre - just sometimes they can provide counselling/family support workers a bit quicker.

MannyMoeAndJack Wed 09-Jul-08 17:30:33

I can empathise and sympathise. My ds has a completely set of needs to your dd BUT he is still very hard work. He weighs a ton at 5.5yrs already and I wonder how I will be able to change his nappy when he is much older? Will SS even care if I can't manage it?

Have you ever thought about your dd going into a residential unit, say, one weekend each month? Does your area offer that service? Or Family Link? We're down for Family Link but it's taking time to find a family and tbh, my feeling is that they won't find one because my ds needs a completely modified environment. My hope is that he will eventually be able to use a residential unit for one weekend each month. But it's a waiting game. Perhaps you could look into it?

Hope you feel better soon.

sarah293 Wed 09-Jul-08 17:51:00

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TotalChaos Wed 09-Jul-08 17:54:37

not at all negative re:Surestart, some are brilliant, others are just glorified baby clinic/toddler group venues. It's so horrible and crap and unfair that she has such severe CP (and that dealing with the systems causes such stress on top).

MannyMoeAndJack Wed 09-Jul-08 17:58:50

I'm sick of my ds's problems too, if it's any comfort. He is a major pita right now. Can't leave him for barely a second and he is so hyper. Even school have noticed a change lately (for the worse).

People say it gets easier when they get older but I'm not so sure. I think some things may improve but other problems manifest themselves anew; one step forward, two steps back.

MannyMoeAndJack Wed 09-Jul-08 18:45:40

Just gone into ds's room (not more than 4/5mins after changing his wet nappy) to find crap all over his bed and bedding. Nice.

Don't we have such fulfilling lives caring for SN kids.

Tclanger Wed 09-Jul-08 19:13:25

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Romy7 Thu 10-Jul-08 09:09:41

get yourself bumped up the list for assessments. next time you find yourself in tears call ss. next time you attend an appointment and feel like crying, do it. if we all wear our 'coping' hat all the time, there is no reason for anyone to do anything to help. it is a huge step, i'm a total control freak and to let anyone know i'm not coping would be possibly the last thing in the world that i would choose to do, but in these circs it is the only thing that will make anything happen faster. you aren't taking anything away from people who need it more, you are admitting you need more help - only two months until school! xx

BriocheDoree Thu 10-Jul-08 09:33:39

<<Hugs>> also, to you both. Hope you can get some HELP riven. I would also go with what Romy says. I got a lot of help recently by bursting into tears during a normal check up (not my style at all, and actually nothing to do with DD, but it was the first time I admitted that I wasn't in perfect health either. I seem to get this exhaustion thing post babies!) Really hope that it helps when DD starts school and that she really enjoys it and settles well. Saw your website the other day. She's so pretty!

sarah293 Thu 10-Jul-08 10:59:19

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Romy7 Thu 10-Jul-08 11:06:22

no. emergency appointment, not routine.
don't give up riven.

sarah293 Thu 10-Jul-08 11:09:10

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Romy7 Thu 10-Jul-08 11:21:29

ring the receptionist whilst you're in tears. seriously - take a huge breath and just do it - sometimes you have to make them listen to you. i can't believe the idiot you saw didn't just refer straight away to another gp for later - he won't be the only one on today. here they will prep the prescription but check with a regular gp that it's ok.

you know the rollercoaster will shift direction a bit in time - hang in there.

TotalChaos Thu 10-Jul-08 11:21:32

agree with Romy. this is an emergency, phone up and demand an emergency appointment without giving details if it's a stroppy cow receptionist. you've not slept for how many days (or weeks) which is really not helping how you are feeling.

Romy7 Thu 10-Jul-08 11:23:52

you're exhausted, you need a rest. is there no-one that can take over for half a day so you can just crawl back to bed?
have you been to look at a hospice for o'night? there are some that do provide 1-1 night care - people do have bad experiences, but if you find the right place they are a godsend.

sarah293 Thu 10-Jul-08 11:25:32

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Romy7 Thu 10-Jul-08 11:26:22

not right now obv! don't dismiss it out of hand though.

Romy7 Thu 10-Jul-08 11:26:55

x post - do ring now lol!

sarah293 Thu 10-Jul-08 11:29:04

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