Just a quickie, am interested to know how many of you have a social worker or someone similar who supports your family? I am conscious that I have no one from local area to provide advice for example with child care / education / benefits etc. Truth be known, I feel totally alone in terms of Jasmine's welfare and am not sure whether there is help / support out there that I am missing.
Other than her peadiatrtician who I now won't see for 6 months, I have no body to discuss any concerns with regarding Jasmine. (Apart from you guys of course, that goes without saying!)
Hi Lucy, I don't have a social worker for Rachel but I know that every area has a children's team that works for children with disabilities ( I know we don't think of our little ones like that). I'm surprised you HV isn't supporting you more, mine has been brilliant. i had a social worker from the childrens team for my son jason when he was growing up & it was very helpful, I think my HV referred us . What about your local DS group? Mind I haven't really linked up with mine properley as it seems mostly about fundraising . Another thing is the 'face to face ' project- they link togeteher people who have children with similar or same special needs, as befriending & support, I've posted the link here ther should be someone to contact in your local area. I've met with someeone from our local area & it has been good to share experiences & because her daughter is older she has been able to offer advice etc . Give it a go. www.face2facenetwork.org.uk/ hope this is of some help. Susan
Hi Lucy, I don't have a social worker at least i don't think I do!! Does Jasmine have a portage or a physio person? They are very helpful and have helped me considerably. Our local downs group is also very good have you found a local one? I was very unsure about going at first and i've still only been 3-4 times to date but have to say they are lovely.
I had a student social worker but she said that the only think that the system could offer us at present as Jack is so young is respite care. We told her that we were not interested and she said that she would do a report and we would not see her again until Jack is at lease 7.
We had a visit from an Educational Physiologist last summer regarding Jack's education and we now see a special needs teacher every 3 weeks.
You should get in touch with your Child Development Team saying that you have so many concerns.
Gemma has a portage teacher who are great for advice, especially education. Gemmas health visitor still comes out to Gemma every 6 weeks and she is brilliant for advice or if she cant help she can usually put me in touch with someone who can. She will keep coming out for as long as I want her to. You should definitley have a bit more help and support. x
Hi, we don;t see a social worker specifically but there is one at the child development centre if Iwanted to see one. We have a play/meeting time every friday morning at the cdc which is great as the kids all get to play together then the parents can go to a different room for a coffee and chat and the carers look after the little ones. I've found that I've learnt more by talking to other parents than I have from the professionals as they only seem to tell you something if you ask about it but if you don;t know something exists then how can you ask about it (ifkwim). xxx
we had a social worker for georgia and she was brilliant! i only really used her for help with the DLA and getting a council house. She then signed us off as we didnt really need her anymore but shes there if we need her again. My health visitor refered us to her the first time then i refered myself the second time
In our area we have 'specialist nurse advisors' - basicly health visitors who specialise in looking after families with children who have disabilities. They've helped us since Harry was born and this has included help with all the many forms we have to complete + statementing for school, I've been told they will support us until Harry is 5 years old and then it will be the 'school nurse'.
Have you had much contact with Jasmine's health visitor? Is there a local downs group in your area? It's always really helpful meeting other people in your local area because often other parents can be the best people to let you know what's available where you are. xxx
Hi everyone, thanks for your replies. As it happens I have now had a referral and both a social worker and a member of the Child Development Team are coming to see me and Jasmine next week. I stirred up some trouble because I wrote to my local MP askng what support infastructure is available for parents of children with disabilities like myself and what policies they have to assist with development and integration. I also asked about local spend etc. The next day my Health Visitor called me in a right flap asking whether I felt unsupported! lol.
In answer to some questions, the local DS group is a fair distance from me and difficult for me to get to as I currently have no car but I go to some meetings and as you all say, they are helpful. A few of you have said in the past that services are a post code lottery but in my area there are no portage workers, no access to speach therapists etc. I think my main bug bare is that I don't know what is available and how to access it. Anyway, will let you know how next week's meeting go.
i have a special needs one met her at the child assessment clinic and she was the one who set up the baby group , it was beore christmas when we first went and wil have another meeting again when she is one i think this is where you see everyone social worker, physio, speech therapyst, ot and peadetrician as well and it is also here where they refer you to hearing and eyesite clinics etc