FAS/D - OUT OF THE BLINDSPOT

FAS/D - OUT OF THE BLINDSPOT

From Joy HG

The House Of Little Miracles is going large! Please help raise enough money to provide free training & ongoing support about *FASD for 10 Primary Schools. *Foetal Alcohol Spectrum Disorder; a form of brain damage aff...

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Update #6

about 1 year ago

It's been a while!

Hope you had a brilliant summer!

Now that the schools are back, things are starting to move this end.... I'm visiting the first school tuesday and from there I have a steady stream taking me into February next year. Its exciting!

I've been working on the content of the training and as we speak the handout is at the printers!

Great news - your overwhelming generousity has meant I am able to set up a website with an area specifically for teachers to give them online, current and evolving resources and information to use. This is the best bit for me as it means teachers can dip in to what they need as and when they need it. This site is currently with a developer and will be ready very soon. I'll be sure you send you the link so you can check it out for yourselves as soon as it is up and running!

Presumably Fundly will close my account at some point now that my campaign is over so I have moved to a Facebook page. You can find it here...

https://www.facebook.com/houseoflittlemiracles/

If you're on Facebook, you will be able to see updates there if you click the like button. I'll take you with me as much as I can so you can see just how far your support takes us! I've literally just published it, so if you're very quick you may even get to be the first person to see it!

If you're not on Facebook, I'll still send updates by email monthly to let you know how it's all going!

Appreciate you all. xx

More Info

Many of you will be aware that we have three children, 2 of whom have been adopted… as the saying goes, “I forget which two” because it really doesn't make any difference in how we think or feel about them in terms of love. In fact, I feel like I am part of a family that was so well planned and beautifully bought together that it's mad to think it’s all just been a series of happy accidents and unconventional choices!! It's an amazing thing to feel that things are exactly as they should be and you will never catch us taking any of it for granted. I think we have been blessed beyond what we could deserve.

But there is more to raising children than the love that is shared day to day, especially when adoption is involved... things can get very complicated at times and things can spiral very quickly. At least one of my children has a condition called Foetal Alcohol Syndrome (FAS) which falls under the broader title of Foetal Alcohol Spectrum Disorder (FASD). It's basically a form of brain damage caused when an unborn child is exposed to alcohol in the womb. To turn her into a statistic for a moment, she is confirmed as 1 of the 7000 babies that are born with this condition every year in the UK, and my other daughter is more than likely to make her way into the statistics in the years to come. Many of these babies will find themselves among the 70,000 vulnerable children in our care system, mine certainly did. These are big numbers and they are on the rise.

Since they were tiny, Pete and I have done our best to raise awareness of FAS/D and support charities working to do the same. You may have supported one of Pete's many half marathons about 5 years ago where we (and a few good friends) raised money to pay for the printing on mass of information leaflets! Life has been pretty full-on since then and we’ve been quiet (ish) until the past year where I have done a few informal talks to professionals and those looking into adoption about what this condition actually looks like - it’s been enlightening and it's been disturbing. I'm starting to realise just how little is understood about it and how that is playing out in the lives of the children affected.

So let me explain the difficulty here... the damage caused by FAS/D is varied and far reaching, effecting each child slightly differently with a few common themes. With the right family set-up, a stable environment and some well directed support these children thrive but sadly this is often not the case. For many reasons a diagnoses is difficult and without it, the support that is so fundamental to them being able to access the curriculum and go on to lead fulfilling lives is nearly impossible to acquire. The result is that many of these children under-achieve and become disengaged once the structure of school starts to kick in and it has life-long implications for them and their families. They present as disruptive and difficult and the underlying disability remains unaddressed.

That's the immediate, short term issue. Long term it's a real worry... when these children, who on an obvious level have been 'rescued' from a dangerous situation are not supported, the outcomes are catastrophic. Adoption placements can break down as families struggle to understand and manage the behaviours; secondary conditions begin to emerge such as mental health problems, self-harming, substance abuse; truancy, crime, and the statistics currently record that the average life expectancy of a child with FAS is just 34 years old, with the most common causes coming from suicides and poisoning from illegal drugs or alcohol. These are the reasons many children with FAS/D will not find adoptive families in the first place - the challenges they face and bring into a family as they are growing up can easily overwhelm prospective adopters. 

So it's a pretty bleak picture and lately it has had me thinking... what did we actually 'rescue' these children from if we allow this to continue? What would happen if instead of leaving these children and their families to fend for themselves in a world that barely knows this condition exists, let alone understands it, they started to appear on our radar? Would that make any difference to the scenarios played out here? One of the most beautiful qualities about these children is how quickly they respond to stimuli and how agile they are emotionally. I can't help wondering, if FAS/D was more widely understood, if teachers had some strategies at their fingertips to help these children cope in school, if parents could open that conversation up more easily, would the work to make that happen be worth doing...?

For me, the answer is yes! I think the primary school plays one of the most crucial roles in the well-being and success of these children. It has the power to make or break them but many schools have no idea this condition even exists. And that's where I think we need to begin... well, that is where I have actually already begun. I’ve created a short talk suitable for teachers with the sole intention of getting these children more easily recognised, understood and better supported. It is based on my personal experience, draws on research and gives practical insights and strategies. I did this in my children's school and it was very well received but i really want to provide some information to leave with them and some form of ongoing support, otherwise it's mostly a waste of time. These things take money and I imagine we are all aware of the recent cuts to schools. Conversations I've recently had with schools suggest that this isn't a high enough priority for them to contribute to financially… but it is a priority for me and that's what this little project is all about - taking it into the schools without a cost.

I realise this isn't the answer to every inch of the problem but I do think it's a step in the right direction and I am willing to do the work. The good news is that to implement the support isn't necessarily expensive, time-consuming or difficult and can yield fruit very quickly.  Without doubt it would mean these children are happier, achieving more and experience less stress and ultimately fewer family breakdowns. I see no reason why these children can't go on to contribute to society in a way that is as meaningful as their peers and there is no reason why they can't be as enjoyable and enchanting as every other child along the way. We have a tangible way to change their course and if that happens, not only will it help them as individuals, but also the increasing number of children coming into our care system with this condition.

As a family, we have amazing support around us. Dubbed by social services as  ‘the house of little miracles’, my children are loved, supported and well understood. This isn't really about them as individuals… but they are the inspiration and so is everybody who has loved them and helped them come as far as they have. Adoption needs a community and our children are proof of everything that these children can be but often don't become. So it's not about them, it's about the children who no one sees yet and who suffer the consequences every day of decisions they didn't make. I've agonised over what to do for a while now (ever since the Mail Online saw fit to humiliate and degrade these children with their scathing fabrications and judgemental comments). To be completely honest, the whole idea of ‘doing something’ brings back all the emotion of our most recent adoption when we had to fight for three years to have our child seen for who she is and what she needs over a statistic and standard procedure… but what needs to be done, needs to be done and I've yet to find a reason why it won't be me doing it!

So the game is on - to bring FAS/D out of the blind spot. I'm hoping you will extend the support you already show my family and get behind this little project knowing that your part in this is the beginning of a change in the tide ... bring your wallets! X

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Help Joy raise £300 by making a donation.

Joy HG posted a new update:
about 1 year ago

Update #6

It's been a while!

Hope you had a brilliant summer!

Now that the schools are back, things are starting to move this end.... I'm visiting the first school tuesday and from there I have a steady stream taking me into February next year. Its exciting!

I've been working on the content of the training and as we speak the handout is at the printers!

Great news - your overwhelming generousity has meant I am able to set up a website with an area specifically for teachers to give them online, current and evolving resources and information to use. This is the best bit for me as it means teachers can dip in to what they need as and when they need it. This site is currently with a developer and will be ready very soon. I'll be sure you send you the link so you can check it out for yourselves as soon as it is up and running!

Presumably Fundly will close my account at some point now that my campaign is over so I have moved to a Facebook page. You can find it here...

https://www.facebook.com/houseoflittlemiracles/

If you're on Facebook, you will be able to see updates there if you click the like button. I'll take you with me as much as I can so you can see just how far your support takes us! I've literally just published it, so if you're very quick you may even get to be the first person to see it!

If you're not on Facebook, I'll still send updates by email monthly to let you know how it's all going!

Appreciate you all. xx

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Joy HG posted a new update:
over 1 year ago

Update #5

Well that was a fun month!!!

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Joy HG posted a new update:
over 1 year ago

Update #4

Well that was a fun month!!!

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Joy HG posted a new update:
over 1 year ago

Update #3

A mini mid-month update seemed like a good idea but because of your support, so much has happened that it has turned into a Day 12 update instead!

Have you ever noticed that when you post cat videos or cute pictures of your children’s artwork on Facebook it seems to be far better received than when you post about something that carries some weight or has some real meaning for you…?
It's not just a Facebook thing or even an online thing, it seems to be the same in real-life with conversations and small-talk and just so you know, I'm really cool with that and I think many of us are because we’re all pushed for time and energy. The point is, I was very prepared to have something that I care deeply about, mostly ignored. However, this has not been the case! In fact, almost the complete opposite has happened. It's very encouraging to discover that this is something many of us care about and would like to see addressed.

So, this is what we have achieved so far …

If you were one of the people who offered a donation or your ‘support’ right at the start, then you may not be aware that the £300 goal has already been reached. In fact, it was reached in just four hours - how amazing is that?!! It's now sitting at £700 and suddenly your support means that we’re in a position to do more than we had initially expected! What a great win already so to everyone of you who has contributed with their hard earned cash - thank you.

Over the past few days, I've been working (with my new best friend, Mr YouTube ) on a website to support this little project - it's not amazing but it's a start and your feedback or any pointers would be humbly received with thanks! It's very basic at the moment but the goal is to get it into a position where it can be a point of contact and ongoing resource for schools which will be far better than just a handout that gets lost or left in a drawer. It’s likely to need a professional to make it safe and reliable and your contributions have made that a possibility. If you would like to see it in its baby stages, you'll find it here but… BE NICE!!!
https://houseoflittlemiracles.wordpress.com

Several people have been on to the Fundly page and supported without donating… this is absolutely brilliant. When you do this, it shows the schools that this is an area of concern for a whole community of people who care about these children. That makes them feel more inclined to listen and take action when they have so many pressures already on them.

The really exciting things that have been happening have been mostly behind the scenes…many of you have helped to open up conversations with schools and teachers, have introduced me to people who have some influence and may be able to help this message reach further and so far two schools have been booked into the diary for September and this should become three at some point tomorrow! Your messages of support (some from the most unexpected places) and offers of assistance are sincerely appreciated and it seems that what is starting to unfold is striking a chord.

There is still 18 days left in this month and they are many ways that you can continue to help, if you feel so inclined…

Obviously, if you haven't donated and would like to, then please do. I’m aware some people have had trouble getting it to take their money and if this is you, please don't give up!! I don't know why it is being temperamental, apparently turning off the wifi works for some but I am also happy to do it on your behalf if you let me know.

Another great way to help is to hit the link https://fundly.com/fasd-out-of-the-blindspot and press SUPPORT - please don't underestimate the importance of doing this.

To share the page either on social media, with your friends or family by email, text or whatever you like to use is a great way to gain more support. The further you can help it travel, the more people will see it!

And finally, teachers are very busy people and time is running out to catch up with them before the summer holidays start - if you have any contacts within schools, an introduction is proving to be a very useful way to help get the ball rolling.

I think that just about covers it for now!

Appreciate you.

xx

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Joy HG posted a new update:
over 1 year ago

Update #2

There is fuel in the tank and I'm raring to go!!

The support (and by that I mean the messages of encouragement, the practical advice, the introductions and the sharing, as well as the significant amounts of good old hard cash that have come my way) has by far exceeded my expectations.

I don't really see pounds when I look at that total... I see photocopies! What can I say? It's the teacher in me!
I see the number of teachers who I can help to understand this and the ripple effect that goes out from there in terms of how many children this could have a positive impact on in some way. It's making me feel very hopeful about a situation that has made me feel very sad for a long time.

The first school is booked for September and I just want you to know... I will work my backside off to make it count!

Thank you, thank you, thank you xxx

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Joy HG posted a new update:
over 1 year ago

Update #1

Feeling floored and not quite sure what to say here... except 'thank you'!

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