Severe global delays- I need help with this please

[dulciean]

good evening-
I am on here tonight to implore for some input/guidance from the forum.
as of last week my service enrolled a child , who's chronological age is 3.4 years. however, she had surgery as an infant to remove a large brain tumour, and is consequently severly brain damaged. She has been given a diagnosis of global delay- a very generalised term. She has been estimated at approx. 6 months old developmentally. She has limited vision, no voluntary muscle tone or control, and seems unable to communicate on any level - her state is quite catatonic. funding has been applied for and approved- and because i have worked with additional needs children in my past, my director has designated me her teacher/support worker.
i have not dealt with this level of disability ( for want of a better word) before, and feel quite emotionally affected. I have not received her paediatrician's report yet, nor met her other health workers. I feel quite out of my depth and grappling with ways to deal with the emotional side of the situation. to compound things, her background is of another culture that makes communicating with her mother difficult.
Has anyone here had experience with this type of situation, if so what strategies can i implement to make her-and me- more comfortable? ( she will be with me 2 days per week at this stage)

[fchaudari76]

I have not had experience with this level of disability before but I would say ask for an appointment to speak to the parents. They are your best source of info and knowledge and can give you a good idea of how to deal with their little girl.

[cathiek]

HI dulcieann - ask for the parents to come in and meet you and ask them to bring in all paediatrician and other health reports for you to look at prior to the child coming in. Make an appointment time and ensure you get some time that will not be interrupted. Mum may need to bring in an interpreter. Find out how they deal with things at home (feeding/sleeping etc) Ask if it is ok if you ring other health professionals who are involved and get feedback from them too. Get as much information as you can prior to the child starting if at all possible. If it is at all possible make sure you are not assigned other children on the first day. You will need to work out what works best. I have a global delay child who is non-verbal but is able to move around by themselves. I use a lot of gestures (patting tummy for hungry/head for hat before outside time etc) which really helps.
Main thing to remember is if you don't ask you won't get - so ask for some time for an interview - ask not to have other children to start with etc... Get continual feedback.
All the best
Cathiek

[dulciean]

Thank you for your input and support<as life would have it the child has gained a place with an early intervention service which will be much more suitable for her and her family. We can only achieve so much through Inclusion, after all.

[fchaudari76]

Good to hear ... I am all for inclusion but you are right sometimes some children are just beyond our scope of expertise and need much more specialised help and care from persons better trained to deal with their problems.

[cathiek]

I am really pleased for the child Dulciean, not that you wouldn't have done a wonderful job, I am sure, but they will have a better staff/child ratio, more expertise in developmental delays etc. that is what the early intervention centres are designed for after all. I am glad the family took up this offer, so many want their child in mainstream when perhaps, in all reality, they are better of getting specialised help.
Cathiek