Here are some suggested organisations that offer expert advice on special needs.
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how do you meet the needs of an NT child(12 Posts)
.... if the needs of a sibling with ASD get in the way all the time. DC2 is getting oder and I would like to do certain things with DC2 (swimming, going to the museum, cinema etc) and DC1 (severe ASD and severe LD) cannot cope with anything. no family, no support, got turned down for respite. DC2 is really getting upset by it but I cannot see any way around it .
yes, but he is due to a longterm illness not well and cannot really help (he is somebody else I am in effect caring for)
its hard ((hugs))
I dont know about all areas, but i know a lot of respite services round here have had their funding cut completely now.
Is your dc1 in a SEN school? Often the school might be able to point you in the right direction for inclusive activities that you could do with both children - for instance theres a swimming club round here for children with disabilities, that will take siblings too.
It would be worth asking your gp to refer you to get a family support worker. They can help wth some of the things you say, and accessing services you might not know about
GP and paed say they cannot help. school only did a CAF which got us nowhere (turned down for respite). we are in waiting lists for swimming but they are round here 2-3 years long and we have 'only' waited 1 year. I feel so guilty and sorry for DC2
please dont waste too much time feeling guilty. You are already doing everything you can, and whilst cinema and swimming would be lovely, there will be a time when these sort of things are easier to manage, and while it must feel like there are few benefits for your dc2 at the moment, he will be learning and absorbing such a great deal of compassion and skills that other children dont grow up with.
your situation is what it is, and youre making the best of it x
Have you had a carer's assessment and/or tried to get direct payments. Just getting a few hours each week really helped my family. Any holiday schemes that your older son could attend?
no,. no carers assessment. cannot even get to this stage. but my LA cut respite recently to the bone, families in much more dire situations lost theirs. I know we wouldnt qualify anyways and I don't have the energy to battle this out atm
we use holiday scheme during the school hols but I am working all week and need this as childcare in order work. I haven't been at home alone in years I think.
Try the charitable route. MIND/ MENCAP sometimes offer inclusive playschemes or befriending schemes so that you could book dc1 in and have time with dc2. Use the DLA to find and pay for appropriate childcare (respite) instead of via ss (there have been some strides in providing specialist sn sitters in some areas - you know it will take a while for dc1 to be comfortable, but over time this is a good exercise for him as well) Carer's assessment (for both dc1 and dh if he is unable to even be alone in the house with dc1) and see if it gets you anywhere. Find activities they can both do. Find out any availability for extended schools schemes in your area for after school clubs etc.
Find out about any support you can get for caring for dh. Try local carer's groups for info. You may find that you can more support for dh than for dc1.
Try looking around for disability screenings at local cinemas / theatres etc.
Contact groups like skinuk and get to meet-ups. Network with the other parents and carers to seek out opportunities you might not be aware of and tips for dealing with your local system. This can lead to all sorts of ideas. (There are always plenty of NT siblings running around).
Get dc2 into clubs and groups in their own right (scouts/guides whatever) as these youth groups will run trips and opportunities to all sorts of places. Sometimes it's ok to encourage them to go without you, even if you really want to be the one going...
Ship in grandma for a week in the summer holidays. (You say no family but not sure if you mean locally or at all. Ours are 3000 miles away lol, so it's occasional)
Ship in Auntie for a week in the summer holidays. (Ditto)
Work on their relationship with dc1 and use the time to pop out with dc2 occasionally. Or to take everyone out and if you need to leave with dc1 (cinema too unsettling, pool too loud) then dc2 can stay and watch the rest of the film. Or do the same with a child carer if no family available.
Find out local parenting groups for sn - often these are a waste of time on one front, but offer good networking on the other.
And last but not least. Be kind to yourself. You are not failing anyone. Cinema and museums are all very well, but no match for a loving family.
thanks mad, that gave me a few pointers
Oh, also look for 'sibs' or siblings groups. Some areas do have specific youth opportunities for the siblings of kids with disabilities (like a youth club - some offer gaming nights or trips, I have also seen camps). The benefit is that they get to do cool stuff while being in the company of others who are familiar with the pressures on families who deal with disability etc.
A lot depends on where you live. Some areas are better provisioned than others. It does tend to be that areas with terrible respite records have more charitable options (for obvious reasons). I'm always conflicted about the not for profit sector plugging gaps left by the welfare system (in that in an ideal world it shouldn't be necessary) but they do a great job.