What's the hardest to deal with?

[Alethia]

I'm an infrequent visitor to this board, and each time I come here, it strikes me how the majority of messages are about kids with ASD/behavioural issues. It just got me thinking, "What are the hardest things to deal with as a mum of a kid with SN?"

Now, when I finally got my son home from hospital with all his medical paraphernalia, I was pretty daunted, and although I was very glad to have him home, I was also pretty terrified and felt like I must have it really hard (I know, pathetic!). However, as time has gone on, we've adapted to a routine and he's developed very well and things are getting easier all the time. Also, because of his condition we get a cracking home care team. I've always bee very grateful for this, but sometimes I've felt guilty, because I think there are conditions which are actually a lot harder (not to say they're not rewarding!!) when coping day to day - kids on the more severe end of the autistic spectrum, non-verbal kids, kids with severe behavioural issues, locked-in kids, kids who just don't sleep etc. whose parents get precious little help.

Which brings me to this, which parents do you think need the most help at home or during the night? Where do you think the biggest deficits in care are when it comes to budget and provision?

The biggest deficits? All of it. DD has severe quad CP and epilepsy and can't move a muscle. But she gets bored because she is quite bright. So she yells constantly, rarely sleeps and can't communicate what it is that will help. We get 6 hours respite a week where someone comes and holds her so I can attend to the other kids (I have 4)
All parents with SN kids require help to some degree, from decent equipment, to getting to the constant hospital appointments, to respite care just to stop them going nuts. Yet there are no legal guidelines to how much respite you should get. Local authorities decide and many are hopeless with disabled kids at the bottom of the budget. Yet if parents crack, it would cost them way more to care for these kids in residential homes or paying a foster carer than just providing decent respite.
It's hard to compare needs because what will floor one person, another will cope with, plus having other kids, or having a partner or family or friends can make a difference to needs.
If I made a wishlist, it would be a decent level of physio/OT/SALT. Tests like EEG's or ECG's or whathaveyou the same week the consultant says its needed so you don't worry and worry, and respite care according to the parents need, not some formula based on how hard they think individual conditions are.
But it ain't gonna happen.

We were talking about this in school (SLD/PMLD) The mums with kids with ASD were in awe of the mums dealing with medical issues (and I have no idea how people cope when they know their child's life expectancy is limited- they're alwasy so matter of fact about thier children going into hospital etc), whilst the Mums of the children with CP/medical problems wondered how we coped with the challengin behaviours/going out etc.

I think you just get used to waht you know.

Deficits in budget all round. The ones who need help at night are the ones not getting enough sleep for whatever reason (although respite centres are shutting here).

My ds has epilepsy, adhd, speech and language delay and hypermobility. He doesn't sleep well at night and displays behavioural difficulties during the day.
None of my relatives will look after him because they don't feel they can cope and social services told me to find my ds a carer which I did and that we would be entitled to 8 hours respite a week but it went to panel and they have offered me 2 hours respite a week. I am appealing but have been told they won't change this until they have done another assessment, which won't be until June, and they probably won't change it then, and they haven't set up the direct payments to cover this period yet. I seem to have to argue for everything and its tiring.

I totally agree with bobalinga. I thought that encouraging families to stay together and taking up the direct payments scheme would have been more desirable and cost effective for social services, but in my experience it is confusing and difficult to navigate through the bureacracy. I feel I am being penalised because our social worker said to me 'you turned down overnight foster care' but I don't want my ds to be away from me overnight with a stranger, how do I know they will be able to manage his conditions the way I do? Noone knows him better than me, and I think that is one of the points that is missed. Parents know their children better than anybody so they should be supported as much as possible to be able to parent effectively.

I think something that would make a big difference to us is for me to not have to constantly battle for services I have been told we are entitled to, and therefore conserve my energy to look after and be with my ds, which is actually the most enjoyable thing!

Honeyblue- they offered you overnight foster care???? If you don't want that you have a right to ask for the equivalent in cash in the form of direct payments. If they are offering you overnight foster care they can't then say 2 hours dp's- it has to be equivalent. There's a bit on my website but follow the direct payments link- that's where the info is. It states quite clearly that it is not good practice for LA's to operate waiting lists for example and they should not be limiting services. I'd go back to them, and start making complaining noises. I have found the threat of the local government obudsman worked with the LEA, maybe the threat of that and councillors and MP will help.

Hi gess, yes they did offer me overnight respite, I think because my ds has nocturnal complex, (hard to treat) epilepsy so sleep is rare in my house!

I have had an absolute nightmare with SS. I was so happy to get the referral to the children with disabilities team, I felt like finally someone was taking us seriously but it has been pretty awful. We were referred to them back in November 06 and it was only after months of me ringing them and turning up that they finally told me who our assigned social worker was. When it became clear to me that support from them was not forthcoming (I've had a nightmare with ds ms school and am actually in the process of removing him, thought ss might get involved and help but no!) I asked them about dp after reading about it on mumsnet and that was when they told me to go ahead and find someone which I did and she has been brilliant and ds loves her but now I can't afford to pay her for the agreed hours since they retracted their offer of 8 hours.

I had a complaints meeting with them yesterday and I am usually so strong and never cry in front of people but I actually burst into tears because I felt like they were just covering their backs. I did copy the head of childrens services into my complaint hence the speedy complaints meeting after months of nothing.

Thank you so much for your advice, I will definately go back to them now which I wouldn't have done before. I am really clueless about this stuff, my ds is 6 and I have only just found out about dla and blue badge. Its a shame there is noone to inform parents about our entitlements and rights or is there??

So sorry for rant, its been a looong week - in the midst of all this I am typing up my dissertation which is due in on Tuesday!

Oh it's all so complicated, and a lot seems to not be set down in law really, but if they are offering you a service they have to offer the equivalent in dps. My council were good at that. So I would be asking for the equivalent of overnight respite care. Do you have an advice service locally? I think that is deemed good practice as well- to have an independent advice service to aid you. My worker has been so helpful- she comes to my house and helps with the paperwork, helped to get it all set up etc.

It often seems a lottery. My friend weas stuffed by dps, so she complained, as a result there was a big review to try and ensure that the help offered via dps was equal.

Another tip about school. If you are removing your son from school do not under any circumstances say you need dps fro respite during school hours- SS will say that is "education" and refuse to fund. I use dp's to pay for ds1s ABA therapists, but I don't tell SS- I just say they are people playing with him/helping me out. In fact he needs a structured programme - you can't just play with him-0 but they would call it education.

"wroker" being my dp's advice worker (not attached to SS- independent)- ask your SW whether they have an independent dp's advice service- and if not why not?

Have a look at the "direct payments guidance" booklet Lnked to from the direct payments website (linked to via my website). Point 16 "direct payments must be made to all individuals who are eligible to recieve them and want them". must; you want them, rather than foster care, so you'll have the equivalent in dps thanks...... Print off the booklet, highlight the relevant bits and pass it back to them. I find that SS normally become quite helpful once they realise you've read the guidelines.

hardest thing is lack of sleep lol

and also trying not to compare Ellie to her twin sister each day. Seeing the differences daily is hard at times. although it has got a bit easier

Ooops sorry

was a it distracted and didnt read the end of your post properly

sorry!!

The hardest for me is the constant waiting, for appnts, therapies etc & that feeling of wasted time when ds2 could be/should be benefiting from support.
I have never asked or applied for respite as until this last 6 months or so ds2 was always a good sleeper & I get a break at work & I wouldn't have a clue where to start!
A friend had to battle for some home care support for her son with DMD as his condition progressed, on top of all the other battles & heartache, she said it was having to justify her needs in caring for her son that almost tipped her over the edge, sadly her son passed away, it makes me appreciate just how fortunate we are.

dp's arent just paid for respite. Ours are used to pay for ds2's before and after school club (so I can be around to put ds1 on the bus), for ds1 to go somewhere so that ds2 and ds3 can go out with us and have a "normal" family day out occasionally (it's really difficult to take ds1 out- definitely not to cafe's/pubs etc). Also for an extra pair of hands, so we can go to places in the holidays. SS were quite keen to support the family in that way as well (phew).

Thanks gess. Can't believe that something set up to help parents like us can be so stressful to deal with!

Had no idea dps can be used for afterschool club. I stopped sending my ds because the school made such a fuss about him being there. Not because of behaviour but because he was having lots of absences and they were scared but when I asked them to maybe employ someone qualified to look after him or send his worker on some epilepsy training they refused. I found the time he was there really helpful for me to have a few naps, but what can I do? I am taking him out of the school because they refuse to budge and my LEA don't really want to get involved. Can't wait until he is no longer there.

I know what you mean about being able to do day to day things as a family. Respite has been handy for me to spend some time with my older ds and not have to give all my attention to ds2 for once.

I will look into advice services. Its a shame that I have to be on the ball or risk losing out on what we are entitled to. Not always so easy when you're suffering from accumalative sleep deprivation!