The difference a day
Posted: April 26, 2012 Filed under: SWAN UK Leave a comment »This post is taken from the blog HelenSwanMummy which you can read here.
We as a family have had an amazing year of emotions mostly happy but some sad.
My most happy time was the day I married my soul mate whilst surrounded by his family and some of my closest friends, my cousin, and surprisingly my dad, although I haven’t seen him since that day (5th August 2011) which is pretty much how our relationship has been for over 10 years.
I decided to become a member of the JHT family committee, a group of mums who’s aim is to provide friendship to other mums and dads who use an amazing local charity called the James Hopkins Trust who have helped Grace and the rest of the family over the past 8 years and raise money for them (last years garden fete raised over £4,000) and as I said we also had our saddest time of the year with the loss of my mother-in-law in November.
Something else happened last year which I never expected and for anyone who has followed my blog you may have read my post ‘Somewhere To Belong’ and you may know where I’m going with this one now.
About 9 months ago I found a group on facebook called SWAN UK and I sent a request to join it, it is a group for families who have a child without a diagnosis or a Syndrome Without A Name (SWAN). I posted an introduction of myself and my family to this very small group of mums and the SWAN UK co-ordinator, and was instantly welcomed by everyone on the group, at the time it was a very small group maybe only about 30 members and I quickly got to know everyone who regularly chatted on there and all about their children. There were families who were further along their journey in the world of undiagnosed genetic conditions with older children, there were families who were only just beginning their journey. I feel we are far enough into our journey that I can occasionally give a little advice to those just beginning, as although each of our children are very very different and have different needs, at the same time we are all travelling along the same paths, just at different locations.
The group has grown and grown not only in numbers but also in strength, just last week we welcomed the 200th member to the facebook group. Something that has never changed, in the 9 months that I’ve been a member, is the sense of belonging and the amazing, but huge, family we have become. When the children are poorly the well wishes that are posted, the posts asking how they are healing/feeling are continuous. Even when one of the parents falls ill or is just having a ‘down day’ the support and virtual hugs that fills the screen is amazing to see.
Advise or just company is always on hand 24 hours a day, because lets face it us ‘special need’ parents rarely sleep and there is usually at least 1 person online waiting to chat to another parent who isn’t sleeping for whatever reason … poorly SWANs, seizure monster paying a visit, or just unable to sleep .. this is my usual problem.
The best thing about the group though is this …. it doesn’t matter if you want to rant, scream, shout, cry, or (the best one) celebrate something special your SWAN child has done, there is ALWAYS an entire family, a chosen family, a supportive family, there waiting to do all those things with you. Because when 1 parent is hurting we all are because most of us have been through the exact same feeling before already and we’ve all grown so fond of each others children that when its something good we all just want to jump around and shout from the rooftops how proud we are of them, the first time they laugh, crawl, sit unaided, or take those amazing first steps that have defied everything the specialists say will/could never happen.
I love my SWAN family and even better, my SWAN sisters (and a few brothers), who just know what to say to each other to make things seem not so bad anymore.
Finding this group has been totally amazing for me personally, my husband has said he’s noticed a change in me, that I seem to have more purpose in what I do, I’m more enthusiastic and passionate especially about the group. I still get sad, but I have people (other than my husband) who understand why I’m sad and that will do all they can to put a smile on my face again.
It really is amazing the difference a year makes.
Read all about it! The latest SWAN UK newsletter is out!
Posted: April 16, 2012 Filed under: SWAN UK | Tags: genetic, newsletter, SWAN UK, The Sygnet, undiagnosed Leave a comment »Check out the latest edition of The Sygnet here
Read all about it – Edition 2 of the SWAN UK newsletter ‘The Sygnet’ is out now
Posted: January 24, 2012 Filed under: SWAN UK | Tags: newsletter, SWAN UK, The Sygnet, undiagnosed children, winter 2011 Leave a comment »Edition 2 of the SWAN UK newsletter is out – read it here
SWAN UK on BBC Radio UK
Posted: January 18, 2012 Filed under: SWAN UK Leave a comment »Incase you missed us on BBC radio stoke on monday you can hear it here:
http://www.bbc.co.uk/i/p00mq1hh/
Did we mention we were on telly?
Posted: December 15, 2011 Filed under: Family Stories, SWAN UK | Tags: ITV news, SWAN UK, undiagnosed Leave a comment »
Tuesday 13th of December was a very exciting day for all of us SWAN UK as the ITV network decided to broadcast a series of features highlighting the issue of children with undiagnosed genetic conditions.
Starting with Daybreak where a SWAN UK family and the project coordinator Lauren discussed the issues faced by families, the local and 6pm regional news then featured interviews with local families in their areas.
The Hook family on ITV West Country Regional News which you can watch here
The Norris family on ITV Wales which you can watch here
At 6.30pm the national ITV news then also ran a feature expanding on the stories which had been featured in the regional areas and also reported on the ‘Deciphering Developmental Disorders’ (DDD) study being run at the Sanger Institute in Cambridge.
You can watch the Beverly family on the National ITV news here
You can also watch the Brathwaite family on London tonight here
And the Phillip family on Anglia here
In the two days since the broadcast SWAN UK has been contacted by over 30 new families and the Genetic Alliance UK website had an extra 150-200 hits per day.
For more information about SWAN UK contact Lauren on SWAN@geneticalliance.org.uk
Joshua’s meet up with Emily….
Posted: November 18, 2011 Filed under: Family Stories, SWAN UK | Tags: meet ups, playdates, SWAN UK, undiagnosed 1 Comment »
As soon as Lauren advised there was another person inBristolwith a SWAN child, my first thought was great! someone I can relate too and being local was a bonus, so glad she connected the two of us together.
Before we met we chatted quite a bit on the forum about what we had both been through with our SWAN’s. It was brilliant as we both had so much in common already, great to be able to refer to someone, especially who has a child older than me so is a step ahead of me.
We met up a few weeks later in the park, it was a lovely Autumn day. We were chatting to one another like we had known each other for ages, suppose it’s great to be able to speak to someone who can totally understand where you are coming from. We took our SWAN’s to feed the ducks, think they were more interested in the bread rather than throwing it to the ducks..!! We then went on the swings and it was lovely to see Emily getting excited about being on the swing, Joshua was more interested throwing the sand everywhere.
Being able to talk through all your worries and heartaches face to face is comforting and reassuring. I love the way I can talk through all my difficulties with someone being on the same level as me. We will definitely be meeting again and I am already looking forward to it. “
How to find the SWAN UK group on facebook
Posted: November 2, 2011 Filed under: SWAN UK | Tags: facebook, facebook group, SWAN UK Leave a comment »
You can also find the group by clicking here
Global Developmental Delay – is your little one a swan child?
Posted: October 10, 2011 Filed under: SWAN UK | Tags: children, chromosome, delayed development, GDD, global developmental delay, SWAN UK, syndromes without a name Leave a comment »Contact A Family suggest that “is estimated to be five to ten percent of the childhood population” may be considered to have ‘global developmental delay.‘
A Developmental Delay is when a child is not meeting their milestones . ‘Milestones’ are things you would expect a child of a certain age to be able to do. For example, a physical milestone would be to roll over at 6 months old or being able to crawl at 12 months old.
According to the Contact A Family directory (http://www.cafamily.org.uk/Direct/g22.html) a child is said to have Global Developmental Delay (GDD) when they have “delayed achievement of one or more developmental milestones in one or more developmental domains.”
A developmental domain is an area of skills you would expect a child to achieve. The Contact A Family directory lists these areas as:
- “motor skills (milestones in this domain include, gross motor skills such as sitting up or rolling over and fine motor skills such as picking up small objects)
- speech and language (which also includes babbling, imitating speech, identifying sounds, communicating using non-verbal means such as gesture, facial expression, eye contact and posture, and understanding what others are trying to communicate to you – comprehension or ‘receptive language’)
- cognitive skills (the ability to learn new things, filter and process information, remember and recall, and to reason)
- social and emotional skills (interacting with others and development of personal traits and feelings).”
Global developmental delay is when a child is not meeting their milestones in all or most of these areas.
Global Developmental Delay is a description of the child’s problems, it is not a diagnosis in a clinical sense – meaning it doesn’t explain the cause of the problems.
“Paediatricians screen routinely for delays and if they suspect GDD they may ask questions regarding the child’s progress and evaluate the child with a number of tests, both developmental (checking out what exactly a child is able to do) and medical (usually to try to find a cause for the developmental difficulties) (Contact a family According to the Contact A Family directory (http://www.cafamily.org.uk/Direct/g22.html)
Global Developmental Delayis often has a genetic cause like down syndrome or fragile x.
However there also a large number of children with the ‘label’ Global developmental delay where the reason for the delay is not known. This is generally because the genetic origin of the delay is so rare or the chromosome change so small it cannot be found.
As Global Developmental Delay is a label given by doctors some families may not be aware that Global Developmental Delayis not an actual diagnosis and so do not pursue a clinical diagnosis – These families are therefore also probably not aware they could be receiving support and information from SWAN UK – so if you know a child with Global Developmental Delay make sure you let their parents know about us just in case they should be part of our community!
There is also a thriving Global Developmental Delay awareness group that you can find on Facebook here https://www.facebook.com/home.php?sk=group_160169860682019
