Need to let off steam

[Twinmumof2]

My twin boys are 2.5. They are not able to stand up even with support. They are thought to have a rare form of spinal muscular atrophy. They can't drink from a cup, they need to be given food, even sandwiches a tiny bit at a time or they are liable to over-stuff and choke. We had a physio who put them in a standing frame that did not fit them properly and you could slide a credit card under their feet so they were not taking any weight. I asked social services for help (my husband has arthritis and I am thought to have a mild version of the disability my sons have.) social services have reacted by trying to take my boys into care. I pay for help because that is the only way I can survive but I am not rich. We are on social worker number 10 because we keep getting passed on, not because we choose to change. I have had enough. We haven't had a social worker round since early feb and we have not been assesssed since October. We are getting no support. The boys can crawl but have to be carried everywhere, i am only 4' 11" I am really tired. The only good news is that they have been accepted for a SEN assessment. Even though the previous social worker was agaisnt them being assessed. I have had enough, I feel really low and fed up.

tanks for reading the rant.

Ask your health visitor for a referral to home start, they can offer 3 hours a week support or maybe more. They are more hands on than a social worker who just like to tick boxes. Maybe there's other help ie portage not in the same situation as you, hopefully someone else will come along who can help more.

I think you can self refer to home start, tbh.

The hv can also recommend the boys get an early nursery place a couple of sessions a week to lighten your load.

Do you have a specialist feeding SLT? Ours was brill with dd2 who had similar oromotor difficulties - she literally kept me sane.

Ask your paed to get involved. Sometimes they will liaise with ss or the local authority wrt education on your behalf. When is their next check up with the paed? They should still be on 6 monthly, even if they are seeing a specialist?

Have you had a carer's assessment done, either for dh or the twins?

It sounds as though they are all being very busy on your account, but not actually achieving anything.

MP?

Sorry, I think what I meant to say is, you need to have a very clear idea of exactly what you need, and then target appropriately. You have more chance of success this way than if you ask for nebulous 'help' which might give them the idea that you can't cope.

Be very directed.

If you can't do this on your own, and you genuinely have got to the point that you can't cope, then you need to identify someone who you trust who can advocate for your family along the way, and attend meetings/assessments with you.

Are you getting DLA for the boys?

1. Call this charity who deal with all sorts of muscle disease, and are good at making sure children get the help they should. this is the most important thing

1. If you haven't applied for DLA for all of you, do so now. Call the enquiry line and you'll get sent date-stamped forms (so payments are backdated) with 6 weeks to finish completing them. Otherwise the claim starts when forms arrive there.

Worth considering:

1. Carers assessments as well as 'child in need' ones, as suggested above
2. Health visitors 'for special needs' might exist in your region: ask
3. GP and paediatrician are worth getting on side, they wont know they might have to back you unless you tell them how useless SS have been.
4. This source of help and info looks good too.

1. Once you've spoken to the helplines, go and see your local councillor, preferably in tears and with the children, to ask if they will speak to the director of social services about your case. As said above, have a clear idea if exactly what help you need eg 1 or 2 carers for x min twice a day, plus x respite per week (or whatever). Explain how that will mean the NHS /council /society end up avoiding expensive disasters like unnecessary foster care. If the charities can send an advocate with you, even better.

1. Look at local schools, and learn about statements, they can start from age 2 to allow proper nursery provision. IPSEA and SOSSEN websites are helpful, you need to get cracking now as it's not straightforward. This is true even (especially?) if the professionals seem to have it in hand. If physio etc are 'educational' in the statement, provision is guaranteed by law. NHS just have to do what they feel they can offer, taking into account their resources

Hopefully this isn't relevant, but be aware: Sometimes there just isn't a suitable local school, so the parent goes to tribunal because out of area provision is too expensive for the LEA to just agree. If the children were taken into care, it's unlikely the council (social care) would go through that rigmarole of fighting the council (education) to make sure the statement was right.

Ps download the cerebra guide to claiming dla for children.