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Support is important, we all will need support at some points in our lives whether short term or long term but if you are a parent of an undiagnosed child you need support 24/7. But often in the case of many undiagnosed children the parents are finding it hard to get the support their child desperately need & every spare moment they have instead of using it to have some time to themselves or to simply sit and have a cuppa they are on the phone, writing letters, going to appointments & having meetings to try and get the support their child needs...every day is a battle, everyday we have to fight for support, when the going gets tough, when we feel like giving it all up and hiding, this is where SWAN UK comes in. Instead of sinking into the depths of despair at the lack of support from professionals & feeling so isolated we can go on line and log onto SWAN UK.
SWAN UK support network is invaluable to us parents/carers of undiagnosed children as there we can ask for advice about anything, talk about the medical issues/problems our children are going through, talk about the many different tests our children have to undergo, talk about which equipment is the best to use for a particular issue like baths, mobility, feeding and many more. Its a place where if we are upset or angry we can rant and cry without fear of reprisals as everyone on there are or have been in the same boat at some point and understand the many different emotions that we encounter...We all support each other no matter what, we celebrate every single achievement no matter how small as we know how precious it is to see our children achieve what might have been deemed impossible by the professionals. If we are not sure of what support we should be getting from the professionals then the best place to ask is on SWAN UK as many parents are a wealth of knowledge as we are spread out throughout the UK & even overseas so we have all experienced different levels of support so can advise each other.
When it became apparent that Roo had issues and that it would be a long journey till we got a diagnosis or if we ever would get one we felt so alone as we had never heard of another child being undiagnosed..I wrote about it here. Then we found out about SWAN UK and became a member and I have learned so much more from them than I have from professionals, I have learned what support I should be getting, what equipment would help Roo, what therapies would help him and so much more...I no longer feel isolated & invisible...I am part of a very important "family" who will be there supporting us all the way...
This is why its important that you vote for SWAN UK who are in the finals for the National Lottery Awards. If they were to win it would mean that many more families would get the much needed support who are invisible because their child is undiagnosed and doesn't have a label so therefore they aren't entitled to the same support as a family with a child who has a diagnosis. So please please please click on the image below and vote for SWAN UK.