Breaking boundaries with FASD 

So I’ve not written in some time, some may think I’m not doing as much, but on the contrary, I’m doing more, but I’m doing more in the south west and less online, and being at the forefront of advice and support with FASD Devon & Cornwall keeps me very busy. 

In all honest,  a year ago I would have never invisioned myself setting up my own organisation. How I’ve got this far I don’t know, but I am determined and passionate in helping those affected by prenatal exposure to alcohol. 
So what switched my focus, from online with FASD Through my eyes, to setting up FASD Devon & Cornwall? It came out of a very low for me after Christmas 2015 was spent alone, and I found myself having very negative thoughts, including self harm and suicide. After getting through Christmas and new year, I tried to seek help, most people’s replies where, what is FASD? And what is it I wanted help with? I could answer the first question, but not the second, I know I just wanted to stop feeling how I was feeling, no amount of talking would make it go away. Eventually I gave up looking, but I did find helping others online was helping me, and very rewarding. But…… I could not get the thought out of my head, what about the others in the south west who have no support, and what little help there was came from professionals that only new small parts of the spectrum, like attachment disorders, or ADHD, and personally I feel just addressing one issue, doesn’t always help, when one problem can trigger another. How can you help an individual with an FASD if your are just trying to help with one small part of it. 
At this time I didn’t realise just how much experience I had in the different aspects of FASD, all the way from anxiety right through to heavy addiction. In my eyes I was just a bloke who had had a tough break, got on the wrong side of the CJS, and ended up in prison, homeless, wanted to end my own life many times, and attempted it more than once, had a list of broken relationships, and been addicted to alcohol for 10 years, which almost nearly killed me too. To an extent I see see myself that way. But I’ve come to realise my story is one of hope, to so many parent, success for an individual affected by FASD is possible. Yes, we all have our areas that we struggle in, but if you/we can find our strengths the we can excel, and possible become a huge success. 
We to can overcome the struggle of living with FASD, yes there will always be things I cannot do, and yes I struggle, but when I am out talking about FASD and educating and supporting others, that is where you will find me at my best, and in my element. 

So no matter what you might be struggling with right now and a parent, carer, fosterer,  adopter or individual with an FASD, a bright future is possible, sometimes it takes patients, in my case I had to hit rock bottom, but I came back, and I will continue to grow, learn and educate others for as long as I can. 
Lee Harvey-Heath

The actors behind the FASD curtain

For those with FASD much of life for them as they get older becomes an act, not because they choose to hide their disability but because the majority of nuerotypical people don’t understand just how hard life can be when you have so many disabilities or mental health issues all at once, like anxiety, depression, borderline personality disorder or bipolar.

Many see these issues as separate conditions, but with FASD we can have many of them at the same time, and because people do not understand that, we hide it, and we hold it together for the world to see us as ‘OK’ but when we are alone the meltdown starts, the emotions flood out, the brain races, with every thought and feeling we’ve had that day, that we’ve kept to ourselves, to either just keep the peace, or save ourselves getting grief, and more so because we know if we really told others how we think and feel they wouldn’t understand anyway, so why waste our time. 

Children with FASD do not know how to control these thoughts and feelings so there meltdown usually involve lashing out, swearing or screaming, but adults cannot get away with this, so they bottle it up, and it eats away at us, until we are alone and often we unintentionally take it out on the closest person to us, or try to hide it with drink or drugs. But its only usually one or two people that get the brunt of it because our social skills are not good so we don’t have many friends, and some of the few we do have I guess get sick of hearing about our problems so our friendships never last, and the few friends we have often become less. 

So we become actors, always hiding what’s really going on in our heads because people don’t get it, and we put on our ‘happy mask’ before we face the world, and all day we long for getting home to take the mask of and try to process everything that’s going on in our lives, often with knowbody to be completely open with, because not one person can fully understand the broad spectrum of issues that come with living with a Fetal alcohol spectrum disorder
Lee Harvey-Heath

FASD Through My Eyes UK

FASD – Born addicted

So 5 years ago today I had my last alcoholic drink, why is that important….I was an addict, 10 years of drinking from the age of 16. I started after being placed in a hostel because I no longer wanted to live at home, I became addicted to alcohol in a very short space of time, but I was born addicted. 

What fuelled my addictition at that age was the death of my father due to his addiction, I was 10, and around two years later the murder of my classmate, both deeply traumatic for me at that age, not to mention all the early neglect I had been through that I mentally tried to block out constantly. 

As the years past through my addiction, nobody detected my FASD, why???? Because the alcohol and drunken behaviours mask everything that was wrong with me, it covered my memory, anxiety, depression and other cognitive impairments, to the outside world the reason for those problems I had was the alcohols effect, which I have to add cost me relationships, my children, my home, on more than one occasion, and later on led me too prison, and after almost cost me my life. 

Many of us with FASD are born addicted to alcohol, and have addictive personalities, but with the right support and early intervention I believe the lives of these youngsters can be positive, and they won’t end up being a burden on society like I was. 

But a lot still needs to change here in the UK for that to happen, where I live there is no support, so I’m fighting to make that happen. 

The photo attached with this blog is my very own son, a happy and healthy beautiful boy, he doesn’t have FASD but I do, I was born with FASD and born addicted to alcohol. Not my choosing, but my problem, it can be a struggle some days not to want to drink, but I have gained so much that I lost through quitting my life now is completely different to was it was, and I’ll never go back to alcohol. 
Lee Harvey-Heath

FASD Through My Eyes UK

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FASD is so tiring

So yet again I’m sat here wide awake at 2.50am. I’m tired, I’m always soooo tired, but that doesn’t mean my FASD brain is going to say ‘oh we’re tired now Lee, let’s get some sleep before our busy day tomorrow. 

Nooooo, of course its not, MY brain is saying ‘oh your tired, your body aches with tiredness, your so tired of being tired you want to cry, and that melatonin isnt going to work tonight, oh what about this idea, or what about if we did that, yes and we must do it right now because our cognitive impairments won’t let us remember if we go to sleep, so we HAVE to do it right now’

Going through this most nights, is not fun, especially when its been going on for so long that you can no longer remember when you actually woke up feeling like you got some rest, I am always tired, and should that moment come when I feel I could actually sleep it is always at a time when it isn’t possible, when I’m out, or on the bus, and my brain tells me ‘oh we’ll get an early night tonight’ then to get home and finally settle, my brain says ‘oh I was only joking about getting an early night, its not really going to happen’ 

So I end up being awake at 3am, like right now, feeling like I’m on autopilot writing this blog, my body hurts, legs, head, eyes, but my brain has yet again told me to write a blog right now, because I will forget what I want to say, so now I’m sitting here, phone in hand typing away with whatever word comes next, my eyes are blurring, and I’m not actually reading what I’m writing, my brain is in control of my thumb and that’s about it. 

This constant tired, restlessness is exhausting and draining, I’ve tried many Technics but not found one that helps now I’m an adult, apart from melatonin, but that only keeps me assleep once I’ve actually gotten to sleep in the first place. As a child music would help me sleep, but now it keeps me awake. 

We are always so tired. 

I think my brain is satisfied we have written this blog now, Time to try and get sleep, not rest, just sleep. 
Lee Harvey-Heath

FASD Through My Eyes UK

Why do those with FASD end up in prison.

Why do so many with Fetal alcohol spectrum disorders end up being a burden to society and locked up. 

To most people its all due to plain and simple bad behaviour, but to those who know FASD will tell you different, and they are right. 

So what brings someone that looks absolutely normal to the outside world to there knees and locked away, not really understanding how they got there in the first place, what went so wrong that they ended up being shut away from the world, and labelled a criminal, and some can never live that down, some end up with a criminal record for the rest of there lives, and no matter what they do after that, to some people they will always be a bad person, disability or not, that label ‘criminal’ will always be there, effecting them for the rest of there lives. 

FASD is brain damage, irriversible brain damage, and many of those with FASD have been in care, feeling rejected by there birth parents, that feeling sticks with them for the rest of their lives, and can effect every relationship they ever have, fear of being rejected, and because of this they are much more likely to reject before being rejected, they’ll push people away to the point there is no one left, that feeling of ‘knowbody wants me around’ is constantly there, it never goes. So eventually they end up alone, or that is how they often feel. Also many of these individuals exposed to alcohol before birth are born addicted to alcohol or drugs. They are also vunerable, not always knowing right from wrong, with the inability to think about consequences, you can tell them over and over ‘if you do that, this will happen’ but due to the brain damage and cognitive impairments they don’t remember it when they are left in this world without support, they are easily led, and often can’t say no, they are people pleasers, so they will do things for others not thinking of themselves, and what might happen.

So you’ve got all of that, which one person is dealing with, and quite often they don’t even realise the problems they have, yet none of what they are going through is there fault. 

So you have this person, who receives no support, because there isn’t the support there to help them here in the UK, they have sunk so low, on there own, not knowing how to deal with there brain damage, or not even knowing they have FASD. 

How can you expect this person not to end up in prison or worse, they are not bad people, they’ve just had a really crappy deal, and have so many issues they didn’t ask for. They need support.

Things in the UK desperately need to change when it comes to FASD, it needs to be common knowledge that there should be no alcohol in pregnancy. 

THESE ARE NOT BAD PEOPLE, THEY NEED ALL THE HELP THEY CAN GET.

Lee Harvey-Heath

FASD Through My Eyes UK. 

Find me on Facebook, Twitter, YouTube and LinkedIn.

FASD – A gift and a curse

FASD is a disability, we all know that, but some parts of it makes us stronger than neurotypical people, when you think about what we have to deal with every day, and how frustrating life for us can be, and how not only the world around us get frustrated with us, but we get frustrated with ourselves. Often making ourselves miserable pleasing others just to save ourselves grief or criticism. Yet we still battle through it. Also the fact that often we don’t ask for help, because if we ask once and don’t get the help we need then we don’t always ask again, but what good is asking people for help if those people were asking don’t understand or realise we are asking. So often have I given up asking others for help because they just don’t seem to get it. But for a child asking, if a parent doesn’t understand, and that child gets angry because they don’t get the help they want, they get punished for bad behaviour, so we stop asking and bottle it up, and battle with it inside, which makes us trust less in others, and sometimes rely less on others. 
Some with FASD don’t feel physical pain like a neurotypical person, to an outsider, this is surely a good thing, NO, the makes life harder because when you are Ill or in pain, you never give a true account of your symptoms, so quite often we go longer with health issues before we even know we’ve got them. 

But although those with FASD struggle in areas most don’t see, we have gifts too. There are different things each of us can do that we do better than most, we have our own strengths. Some of us cannot work a normal job, but that doesn’t mean we do nothing, me personally, I’m creative with words, I’m good with music, I could always play music by ear, I’m good at helping others, although not always good at helping myself. 
So just remember, yes FASD is a very serious disability, and there are many areas we struggle with, we are not incapable, we know what we want, and with the right help, support and guidance we have the capability to get there. We have our gifts in amongst our curse. 
Lee Harvey-Heath
FASD Through My Eyes UK

When FASD takes over

I’m still fighting with my head, and I’m not clear of this storm that my FASD has brought me to yet, I’m trying my hardest to fight it but I’m up and down constantly, feeling like fear, anxiety, depression anger, hurt, pain and absolute darkness is trying to consume me. Telling me I can’t do anything, I’m not capable, I’m not strong enough, I’m worthless and knowbody would care if I was to disappear, and the world and the people in my life would be better of without me around, that’s how low my mix of issues that come with my FASD takes me, and because I am fighting this battle inside my head, I have no energy for anything else, I am emotionally unstable, because I’m so drained and tired of fighting the negativity in my head, I’m taking everything negatively, and taking things out on people that are trying to support me, as best they can not knowing the storm in stuck in the middle of. 
I want it to end, I want it to be over, and I know it will be…hopefully sooner rather than later, I just want the sky to clear, and feel like me again. 

It will get better, I know that, but until that time I just have to weather this storm that is happening in my head. 

FASDay 2016 Final Thought

So FASD Awareness day is coming to an end here in the UK, and its been a long day of posting to my Facebook page and tweets…..lots. I’m very tired, but it all seems worth it, I had lots of retweets, even by the the NHS and Health watch Plymouth which is great. 

I’ve had a few messages from friends overseas saying ‘happy FASD day’ which is nice, and I’ve said it myself, but thinking about it. Today shouldn’t need to exist in my opinion, as there are so many out there with FASD that don’t know it, struggling to survive as I did years ago, homeless, addictions and or in prison, all through a disability they don’t know they have, which they arent to blame for, and aren’t getting the support they need. How can they be happy. I know I probably shouldn’t see it that way but I do, because that was me once…..lost…….alone……not understanding why I was so different, or having anyone that understands. So please spare a thought for those fighters, the ones battling with a disability they dont know they have, and sadly may never get the answers they so rightly deserve. This FASDay evening I’m thinking about them, the 100s if not thousands out there that all struggle due to prenatal exposure to alcohol.

I also want to say to all you parents, fosterers and carers, keep doing what you are doing, stand by your FASD Superhero, even through tough times, because that is when they need you the most, on there darkest days. There are always brighter days to follow. You just have to persist, stand by them, and fight for them when they are weak. They won’t forget it when they grow up. 

And to all those out there like me that suffer with FASD. I know when you first get a diagnosis,your angry, upset, and hate the world and the person that caused you harm before you took your first breath, whether it was unintended or not, holding on to that anger is no good for you, and won’t help you move on with you life and grow. We are all different, but don’t let one bad thing hold you back from trying others, we can be successful too. Yes…..it takes us a little longer than it does most people, but so what, just be yourself, don’t be anyone else just to please anyone else. Don’t let anyone tell you you can’t achieve, or can’t do something because you CAN, and if you really want it, you will. 

Tonight on this FASDay 9-9-2016, my thoughts are with all of you. 

Lee Harvey-Heath

FASD Through My Eyes UK

Never Give up on FASD

So its FASDay soon, the 9th day of the 9th month, a lot of thoughts whooshing around my head, my kids go back to school next week, and I’m so very busy, raising awareness, preparing for public talks, making videos, meeting people, writing, the list goes on. I may get exhausted and tired but I’ve had to learn to keep an eye on myself, my moods, and pay close attention to it because the last thing I need right now is a meltdown, and having FASD they can creep up on you suddenly without warning, yes…..even as an adult, after all I still have brain damage due to prenatal exposure. 

Which is why I do what I do, that is what drives me, and forces me to never give up, and that is one very important message I would say to anyone that is dealing with FASD, whether it be living with it, or living with someone that has it. Those with FASD so often feel rejected by the world and everyone it it, that we want to just give up fighting, fighting for who we are, what we believe, and what we want to be or do. We just give up. Why would we bother when in our eyes nobody cares. I felt like that once, I gave up to the point it almost took my life. Now I refuse to give up, in order to try and prevent others with FASD taking the lonely road I walked, at least for a while I thought I was alone. But that’s where my mum never gave up, no matter what I did, or what I put her through, she never gave up on me. She was always there in the background trying to support me and help me through, even though most of the time I couldn’t see it. But that inevitable changed my life, and she is the reason I survived. 

So remember, those with FASD, some days are hard, and seem impossible to get through, I know that from my own experiences, but be strong, be determined, not to be as normal as you can, but to be who you are, don’t let your FASD determine your future, or your life, be yourself. You do not need to be someone else. Your FASD, although its a struggle to get through many days is not who you are, it is part of you, but don’t let it control you. 
And to those who are close to someone with FASD, never give up on them, because you could be the one reason, they carry one. They may not tell you or show you, but you are important to them, even if the world has given up on them, be that one person that doesn’t. Be there strength when they are to weak to get through the day. Be that one person they can trust not to reject them, and they will in time give you a reason to be proud. 

NEVER GIVE UP. 
Lee Harvey-Heath. 

FASD Through My Eyes UK

FASD & Childhood trauma

Why didn't you want me

So I’ve just read another blog that reminded me of how I felt growing up without the people that brought me into this world, you know, the ones that are meant to love you unconditionally, protect you, keep you safe and take care of you. Now i’m older I’ve come to realize some people are just not capable of that.

When your a child that’s been adopted and after years of no contact, and only receiving a couple of birthday cards, and having undiagnosed FASD, the negative brain really can take over. You start to question if you were ever really wanted, if your the reason your birth parents couldn’t cope, and you realize your not that important to them, if you were, then they would keep in touch. and whats even more devastating is that although you feel all this rejection from them, you so badly want to see them and you can’t help but have expectations of having a real bond with them one day and you long for that day to come,  but it never happens, because before you ever get the chance to see them again, they die. All that hope and imagining of seeing your father again and feeling his arms around you is suddenly ripped from you, because you know it will never happen, loosing a parents is so hard, but you can’t imagine what its like to loose a parent you have build up so much hope of looking forward to seeing again unless you’ve been through it. This is exactly what i went through at the age of ten.

For a few years i didn’t want to believe it, i tried to pretend it was a lie, and i would see him again. My adoptive mum tells me that one night i was crying, and said my dad was stood at the end of my bed, and it scared me, i vaguely remember it. but even after that, i didn’t want to believe he was gone and i would never see his face again. i expected him to knock on the door one day, i honestly thought he was going to show up one day, because the thought of never seeing him again was to hard to think about.

It was from the age of 10 i began to emotionally shut the world out, if i shut my emotions out, i couldn’t get so hurt again, but eventually, years later i realized i was never going to see my dad again, he wasn’t coming to get me, and we weren’t going to be father and son again. i stayed as strong as i could but even 4-5 years later at boarding school i would sometimes cry myself to sleep, my dormitory mate used to get really annoyed with me because of it. i couldn’t help it, i was dealing with something he couldn’t even imagine, he was an only child, with both parents.after i left school and ran away from home the last time i was placed in a hostel for vulnerable teens. I started drinking, and this was when all the emotion really came out, i was addicted in about 6 months, and started to self harm, i was very depressed on and of for years, but all that childhood trauma fueled my alcoholism, i drank to try and forget, but always became worse when i was drunk.

 

what am I getting at here other than just writing whatever comes out. Although most of what i write is FASD related, there is a lot of early trauma involved too, adoption alone can be quite traumatic, the majority of children with FASD seem to be adopted, fostered or in care, and for these children there is a huge amount of trauma that comes with them plus the FASD.

Lee Harvey-heath

https://www.facebook.com/FASDThroughmyeyesUK/