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Hello all. My wonderful son has just been diagnosed ASD at the age of 10. It feels like I have battled for years to have him helped. He was excluded throughout most of his life from halloween, Christmas , fire engine visits due to nursery care not having "the resources" to care for him properly.
In my LA a child over 3 cannot wear a nappy to nursery, even though issued free ones from NHS, and being declared medically behavioral incontinent. so, was allowed to soil himself daily. Staff would shower and change, but not nappies. Why???
I have yet to contact agencies to start getting support. I would dearly like to have a be friender for David, just someone to take him out for a while ,as maintaining friendships under ASD is difficult.
I am a single parent of 4 years, working 2 jobs trying to hold my family together. My daughter , 9 is a great girl, but is often denied the attention due her brothers behavior IE- threats of violence, distruction etc. Easier sometimes to ask her to leave the room .
Just wondering where / what to go or do now. Could someone advise first steps . Thanks for listening
Sorry to hear about your battles - I have been through similar.
Have you contacted the National Autistic society helpline - they are very helpful and may be able to point you in the direction of some more help you can access.
Also do you have a social worker? If you do then ask them to refer you for Direct Payments - in this way you can be awarded money to buy in help so that you can have a rest and some time with your daughter, which is very important. Do your county operate a "buddy" scheme - this may allow your son to build some friendships with other teenagers - again ask social services.
You should also inform the social worker that you are exhausted and that you need more time with your daughter. You are entitled to a core assessment which you can ask for (assesses the needs of all the family). Social services then have 7 days to respond to your request for an assessment to be carried out.
The charity SIBS is also very good at advising ways forward with your daughter ie. how to get more time with her .
It is a bit tiring having to call lots of people with the same story but it is worth trying every avenue and don't give up. I have been down the road you've been down before and it can be very lonely and isolating but there is some help out there.
Hope this helps and wishing you all the very best
Hi FW, thanks so much for your reply and for sharing some great advice.
Alicon, you can call the National Autistic Society Helpline on 0845 070 4004 or visit their website at www.nas.org.uk
You can also find out more about SIBS on their website at www.sibs.org.uk
Good luck and do let us know how you get on.
Best wishes, Rachel
Hi Alicon Hope all the information so far has been helpful. Just to let you know the NAS have more information about siblings and support http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2173 They also run a befriending service http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=344&a=2313 Best wishes, Lucy
Hope all the information so far has been helpful. Just to let you know the NAS have more information about siblings and support http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2173
They also run a befriending service http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=344&a=2313
Best wishes, Lucy
I hope someone has told you about the benefits your son is entitled to, both DLA Care and Mobility Components. Although your son may be able to walk, if he needs RESTRAINT even if it is just a gentle touch on the arm, you should get Mobility Allowance.
Financial help may also be available from the Family Fund for things to make life easier, or for a holiday. Try and streamline your house as much as possible so that your energies can be saved for other things. A dishwasher and tumble dryer are absolute musts for anyone with a child with behavioural problems. My own son was horrendously hyperactive as a child, as well as having severe learning difficulties due to brain damage at birth. Sadly money doesn't cure anything but it certainly helps no end! Good luck.
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