Hard times

So I have been really struggling of late, the dwp have decided my FASD doesn’t count for anything and stopped my money, they know I volunteer through FASD Devon & Cornwall, but that has taken a backseat recently due to my mum being very unwell with parkinsons and lewy bodies dementia, and she deteriorating very fast, she lives a few hundred miles away which makes it even harder.

My self esteem has dropped drastically and I find myself sleeping alot, and a many days are spent shut away because right now my reality sucks, my anxiety and depression are at a very high level, and many days I am struggling to get out of the house. My mum was always my rock, she would be the one I go to for support, and now I have to do my best to support her. I am finding it hard to go to others for support, friendships a seeming to fade, and I find I have become a recluse and rejecting people, I feel if I open up to others I then become a burden to them. I also feel safer if I keep myself closed off from everyone, to many times have I trusted and got close to people and it has turned out badly and used against me, so i feel the safest way is not to talk, and to push everyone away. I doubt people when I hear them say things like ‘I care’ or ‘I’m thinking of you’ I guess I have become so used to things like that being said to me from a young age and it not being true, I don’t believe it from anyone anymore.

I know my head is not in the best place right now, and knowing my mum is not going to get better is the worst part, I know a day will come when she will forget who I am. Or what I look like, and that is a horrible thought, but a lot of it is also fearing the unknown, when will that day come, what will tomorrow bring, will it be a good day or bad day, all these things I wish I could prepare myself for, it is so hard to see this strong independent loving woman that saved my life struggle so much and fade before me. That is truly heartbreaking, and I wish I could take all her fear, pain and worry away. But I can’t, Dementia is a cruel disease.

Sorry not such a happy blog today, I’m finding life very hard at the moment. How do you deal with losing someone before they go, that’s how I feel.

Lee Harvey-Heath

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FASD – The light in this black hole.

When I was a child, long before my diagnosis of FASD, when everyone suspected I was just down, depressed, overwhelmed, lazy and told I just don’t care about anything. My mum would say “your in a black hole” and you need to get out of it. She was right, as mums always are, but back at the young age I never really understood what she ment, or how I was supposed to just get out. It’s not so easy when you don’t really understand what is going on in your own mind, it was always pinned to some traumatic event I had been through, the death of my father, or my class mate being murdered during summer holidays, or some other tough life event that I had not gotten past, and more than one councillor seemed to find me a lost cause. Later on once I began drinking, the alcohol became a mask for the early childhood trauma I had endured, all my dark days were just because of the booze.

Now as an adult, I see things differently, that black hole I was in was partly to do with the trauma, but also a lot to do with the fact I had no real understanding of the way I was, and in that black hole I was so alone because I couldn’t explain how I felt or how obscure my thinking may have been, I knew there was not one person in my life who would understand, absolutely nobody. So that deep dark black hole, although very grim, and me being in it affected those around me, I did not care because I knew in my mind it was the safest place to be, quiet, withdrawn, and lonely, but nobody could bring me any lower.

Recently I have found myself back in that black hole again, this time only deeper, and it’s darker, and again I have not wanted to try to get myself out, the only person as a child that could really get me out of it was my mum, the one person that through all the stress and trauma I have put her through is the one person who could ever talk me out of it. Sadly this time is different, my mum cannot talk me out of it, I’m on my own this time, trying to help my mum, and make her smile. My mum, the one that has been my rock for many years, the lady who brought me back from oblivion, and saved my life, can no longer be strong for me, or anyone else, she has parkinsons and rapidly progressive dementia, and as much as people say……. It’s going to get better, I know it’s not, only worse, and that is hard to fathom, that is what I am really struggling to accept, and at the moment I don’t feel I want to accept that, in dark times like these, she is the one person I could phone, and now that has gone. This week the DWP have decided I no longer meet the criteria for my employment support allowance, and they have stopped it, also meaning my rent will stop. My mum would help me and support me through it but now she can’t.

The one light I have in this very dark time is my beautiful children, all of them make me smile and make me feel proud, I can put on an act for them, even though my elder two know what is going on, I can hide my sorrow, and pain, and wear a smile for them,as I do now when I see my mum, the last thing she needs right now is to be worried about me.

My children, are the little spec of light I can see at the top of this black hole, and as long as I can see they’re light, I will continue to battle on through this time, the worst time I have been through in a long time, they will keep me fighting the darkness.

Lee Harvey-Heath

Why can’t I


When I look at the picture, for a second I feel a glimpse of pride…….. I think. My FASD makes it near impossible to make that connection between my accomplishments and being proud of what I have over come in my life. 

So many times in my life I was told, I’m not good enough, I won’t amount to anything, my goals are not realistic, if you had told me I was capable of starting and setting up my own organisation, I would have laughed in your face, and told you not to be so stupid, because when you hear diminishing words for so long, you believe it. 

Now, if someone says I’m not capable, and I do still hear it, even after everything I’ve overcome and survived, I will laugh at you and then go and prove you wrong. 

I know I am high functioning with my FASD, which is why I feel it so important to try to empower others affected, and give parents, or carers hope for their young ones futures. As I’ve said time and time again, the one thing that helped me get this far is have those that refuse to give up on me. Years back I lost so many people, many said I would kill myself, or end up back in prison again. I proved them wrong, people still criticise me, but I know don’t let it get to me. 

Hitting rock bottom, even with someone that has an FASD, can be life changing, I never imagine I’d be doing what I’m doing now. I couldn’t even imagine living past 40. I lost everything that ment something to me, but I have work my ass of to get it back and succeed and I will continue to do so. Those with FASD can hit rock bottom a lot quicker than most, and it can take a lot longer for those individuals to learn from their mistakes and come out of, but what can make it so much harder, is being in the gutter and feeling alone, and feeling like nobody cares. 

So for anyone affected by FASD, I know life gets hard, stressful, and at time it feels like there is no way back up from rock bottom. But……….ask yourself, why can’t I become successful, why can’t I pick myself up from rock bottom. 

Well I’m here to tell you, YOU CAN. 

Take advice from people, but don’t change who you are to please others, because only when you are your true to you, and be who you really are is when you will find out……. 

YOU CAN SUCCEED. 

Don’t ask Why can’t I, but ask yourself How CAN I. 
Lee Harvey-Heath

FASD Devon & Cornwall 

Breaking boundaries with FASDĀ 

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.