Diagnosis | Sleepless In Newcastle

Hello there folks, I thought that I would write a post about having an undiagnosed child and the support (or lack of it) that we have been able to find for our family. Nobody ever seems to be forthcoming with this kind of information and it is something that is vital for any family who was going through a similar situation as the one that we deal with on a day-to-day basis.

When Pretzel was officially determined as disabled, we were given no information on any kind of support groups, families or any other kind of services that could provide us with support, guidance and help in dealing with the news. Even now, because Pretzel has no official diagnosis, help can be sporadic and also withdrawn for any number of reasons, whether it be funding or that she did not ‘ fit the criteria for their charity to be able to help.’

There are a number of organisations local to where we live who attempt to provide day trips and outings, play areas and other recreational activities for disabled children, however, not all of these places or activities are suitable for children who have extensive special needs or those who do not like busy and noisy environments. This is the reason why families with children like Pretzel often feel isolated, cut-off and that they are dealing with their problems on their own.

This is why the idea that Swan UK has had of creating separate groups for each area of the country (we fall under the north-east category) means that families local to one another can get together in a social and caring environment which caters for all of the children and their particular needs. My family recently attended a North-East get-together for a picnic in a local park and it was fantastic to get to know some of the faces behind the forum names and also meet the children and let them play together with no form of judgement or ‘sympathetic’ looks that make the children and their families very self-conscious.

It was amazing how quickly the children engaged with each other and also how quickly the families started talking to each other about all kinds of aspects of caring for the children but also everything that they like to do that isn’t involved with caring for the children. This last point is probably the most important because when you deal with children with complex medical or physical needs can be very tiring, it can bring your energy very quickly and can often lead you to use shying away from social interaction of any kind with anybody including other members of the family and friends.

It is saddening thought to think that there are not more places but can offer this type of help to families in our situation but it makes me feel hopeful that organisations such as Swan UK can provide such an opportunity for children and their families to do activities together but in an environment where there are other families experiencing the same situation the same worries, the same anxiety and often the same opinions on how to get through the toughest of days that others who are not in this situation can find difficult even to imagine.

It is funny to think that a network of people who’ve never met each other, or, who have had very limited contact with each other, can be so close to each other as a family. Swan UK has a fantastic group of members who send birthday cards, get well soon cards and who offer words of support to each other through the good times and bad times 24 hours a day, seven days a week, 365 days a year. The sad thing about this is that this type of support relies on charity and donations and is not something provided by the government. It often demeans carers and also the people they care for to have to rely on charity to be able to purchase essential equipment, services and facilities.

I do hope that Swan UK managed to secure the funding for these local get-togethers as it has been the first time that my family has been able to go out and enjoy themselves without any kind of ill feeling or embarrassment to simply ‘be who they are’ and be understood by other people’

We have another meeting on 1 December this year where we will be attending the Alan Shearer activity centre in Newcastle which has the facilities to allow our children to play in a hydrotherapy pool, ball pool and soft play and a sensory cave together. This will probably be the only opportunity for our children to experience this kind of phone over the Christmas period as it is often difficult for us to organise all of the essential things that we need to be able to take pretzel out to enjoy these activities on her own.

If you would like to help out Swan UK and support their wonderful work which includes these types of days out and activities for children like pretzel to enjoy, then you can donate at: https://uk.virginmoneygiving.com/fundraiser-web/donate/makeDonationForCharityDisplay.action?charityId=1002602&frequencyType=S

If you do make a donation then please could you please comment in the Message Box stating that it did for Swan UK. That will ensure that your donation gets to the correct part of the Genetic Alliance.

Thanks for listening folks,

until next time Be Safe and Keep Smiling

Without a Diagnosis – Video Documentary as part of Feel Good Friday

Hi folks, here we are at the end of the week once again and I wanted to share something that made me feel quite good this week which was the discovery that the documentary “Without a Diagnosis” that Kat Williams had been working on was ready to be shared with the world. We have had a pretty rough time of it during these holidays with illness, stress and a million other little things that all add up to a bit of an unpleasant time of it. We often feel like this, as do many other families of children without a diagnosis, but especially during the summer holidays as our children are taken out of their daily routine and plunged into a totally different one without any warning. This is often the case when they go back to school as well because we have to get them back into a new routine once more. This is why we all try and grab onto anything that gives us a little hope or makes us feel a little bit better during the holidays and Kat’s video documentary is one of those things.

Kat Williams is a student journalist who is studying an MA in Multimedia Broadcast at the University college of Falmouth and she has made this documentary about children in the UK who have a genetic condition without a diagnosis or a Syndrome Without A Name (SWAN). I know I have spoken about SWAN UK before as I am a member because of my daughter Pretzel. It is not very often that we get a spotlight shone on us in this kind of way so we all jump at the opportunity of promoting these things when we get the chance. I have sat watching through this video at least 4 times now and I have to say that I have never seen something that has so accurately caught the feelings, sentiments and the real situations that families like ours face each and every day. It is a fantastic piece of work and I hope that it gets seen by as many people as humanly possible. I will be sharing it everywhere that I can and that is where I would like you folks reading this to come in and help me as well. First I would like to share with you the documentary “Without a Diagnosis”:

I hope that you may now have a little more understanding of the dilemmas and some of the problems that can face people without a diagnosis and I hope that you will feel like you would like to help families such as mine. I hope I am not sounding too preachy or self-righteous with this post as it is a simple way of letting you folks know what families like mine go through on a day to day basis. This is such a Feel good Friday feeling for me because it is just an extra step towards my family being understood and maybe having to fight a little bit less each time a project like this is done.

I would love for you to share this video with as many people as you possibly can and I would also ask that you please go and visit Kat’s blog and let her know what you thought of the documentary and how it has made you feel. Please let her know how much this kind of support means to families like mine and at the same time get a message of hope, understanding and love out for all of those families who are struggling without a diagnosis across the world.

Thank you folks and until next time,

Stay safe and Keep Smiling!