Better late than never. So true.

I’ll be 45 at the end of this month and, two week ago, I was diagnosed with Asperger Syndrome. I’m still trying to wrap my head around it. I’ve spent 44, very nearly 45, years of my life walking round knowing that I saw the world differently to a lot of people, I knew that I was different. I just didn’t realise that I was autistic. It really is quite the mindscrew.

After the clinical psychologist put Moo on the NHS waiting list for an ASD assessment, she suggested that I read the Complete Guide to Asperger Syndrome. I read half of it before lending it to someone who needed it more. Alas, I can’t remember who that is so have lost the book. That’s by the by. While reading it, I started to recognise behaviours that I see in my father and some that I share with him. He has not been formally evaluated nor diagnosed. In the book, it refers to girls with Asperger’s being far harder to identify so I started reading books on girls with Asperger’s specifically. That’s when dominos started to fall in my head. The more I read, the more I recognised myself. There are traits listed in the back of most books. The most detailed list is in the back of I am AspienWoman. The table has 238 traits listed. I identified with 167 of them, 70%. So I went to the GP and asked for a referral. Apparently, the most common cause for self referral is a parent having a child diagnosed and realising they have the same traits. At this point, I thought that I would be borderline.

Now the NHS is overly subscribed and there are waiting lists for everything. If you want to get an assessment for anything, you have to jump through hoops. So needless to say, my GP quizzed me as to why I thought I had it. I listed the reasons and halfway through, he just said, “I’ll refer you”. Then I got a load of paperwork through with a million questions. I answered them all. Clearly, my paperwork raised red flags because I got offered an assessment which consists of three appointments, 1.5 to 2 hours long, where you are grilled in the kindest way possible. I cried a lot. I went into my first assessment physically shaking because I would have to talk about stuff that I have never talked to anyone about, ever. I still thought I was borderline. The assessor got to the end of the second session and she was convinced that I was nowhere near borderline, I am a full blown Aspie. I happen to be a very lucky one.

The reasons that it wasn’t picked up are several but the main one is my gender. Girls are far more driven to fit in, to connect with their fellow humans. They pay attention, mimic and learn to behave in ways that, although not perfect, mean that their difficulties are far harder to see. Also, like my father and my daughter, I have what is called a high social drive. Basically, we love being with people, even when social communication is confusing for us. My circumstances meant that I had a guide pretty much from when I was 4 months old. My cousin, Dominique, and I grew up together and were inseparable. She is a loud, gregarious character who often spoke for both of us. I then went to boarding school where it was easy for me to retreat into the library or my bedroom when I was feeling overwhelmed. My love of books and films pretty much provided me with the perfect escape everywhere I went.

So why am I telling you all this? Well, because I am not ashamed of it. I sought a diagnosis because I wanted to know. The label does not make me an Aspie, it does not define me. I would be an Aspie if I had a diagnosis or not. However, the thing that that label does is it explains a lot about me. It explains why I am never really sure if I am friends with someone unless they give me a gift, whether it be inviting me for dinner or a physical gift, or if they have stuck around in my life for a really long time. (Gifts are literally the cues in my life that people care. I am not materialistic, it’s just a language that I understand easily.) It explains why I have such dreadful auditory processing, why I avoid the telephone like the plague (I, literally, do not call anyone, ever). It explains why I avoid eye contact (although few people pick up on it because I lip read to help my ears and my eyes are so dark people can’t tell where my pupils are looking). It explains why I am so sensitive to light, dark and sound. It explains why I have such a hard time keeping in touch with people, I really can’t do it, why I find it so hard to initiate conversations (yes, you read that right. It is possible to be talkative, riddled with social anxiety and still not know how to do small talk). It explains why I am so loud, so full on in social situations and talk so fast. It explains why I am so rational, analytical and logical about everything, why I find it so hard to empathise with people who feel differently to me, yet empathise so deeply when I can. It explains my rigid thinking, I’m so black and white. It explains why I am so honest and, at times, blunt. It explains why I do take things literally and will never understand why people say horrible things just because they are angry then say that they didn’t mean it (why say something you don’t mean?). It explains why when I get really upset, I shut down (the amount of times I got accused of sulking as a child when I was in shutdown). It explains my obsessive nature and why I compulsively correct my poor mother and sister’s English. It explains my hyper focus and my ability to creatively problem solve. It explains my high intelligence and my relatively low academic achievements. It explains my synaesthesia and my misophonia, my depression and my anxiety. It explains why I can’t read subtle emotions on people’s faces, or label the ones that I am feeling. It explains my life long fascination with what makes people tick. It explains my profound sense of social equality and justice, my deep love for animals. It explains why I have never identified with the feminine even though I am definitely a woman.

I have missed out because of my Asperger’s. I missed a brilliant career opportunity because I misread my boss. I thought he was taking the piss, not giving me the chance of a lifetime. I have lost friends because they condemned me for not keeping in touch, even when I explained that I was trying really hard for me.

But I would not change a thing. I have a wonderful life. I have friends and family who accept me for who I really am, who know that I love them deeply, even if they haven’t heard from me for years. Social media is a godsend for people like me. We can keep in touch with so many without having to initiate the conversation.

I wouldn’t be where I am now if it wasn’t for my autism so I am so very grateful for it. My diagnosis has brought me peace. It means that I don’t have to maintain that exhausting social persona that I put on like a coat when I go out. It means that I inherently understand my daughter even though we have some different traits from the spectrum.

So, yeah, I have Asperger’s. I am autistic. I have absolutely no problem with that. Technically, it means that I have an invisible disability but I don’t feel disabled by it. My brain was my favourite part of my body before my diagnosis and it is still my favourite part of my body after my diagnosis. Nothing has changed. I think the more people share their stories, the more they educate. The more education, the more acceptance and that is a good thing for everybody, neurotypical or not.


Well, that was unexpected . . .

I’ve just gone for a meeting at the Neo Natal Unit that Moo was born at nine and a half years ago. I was going to meet a wonderful lady, Pauline, who is one of the founding members of the phenomenal charity, Born Too Soon. I have recently joined Octopus For A Preemie UK in order to give back to a charity and hospital to whom I owe so much.

Anyhoo, off I toddle without a care in the world, to the NNU to meet Denise and Pauline. I climbed the stairs to the first floor of the Maternity Unit and went up to the desk, at which point I started to feel a bit funny. I was directed to the Neo Natal Unit, went in and met up with Pauline, which was lovely. She asked me to wash my hands, as you would expect, and, as I am standing at the sink doing so, I start to violently shake and burst into tears. No thoughts were driving this reaction, it was just a full body meltdown. It was a bit embarrassing. When I turned around, Pauline took one look at me and gave me a big hug.

It turns out that while my conscious mind was happily going about its business, my subconscious mind was screaming “WHAT THE FUCK ARE YOU DOING, YOU LUNATIC?”.

Luckily for me, Pauline and Denise and everyone else who was looking at me did not think I was a lunatic. They explained that it might have been nearly ten years ago but the first time back in that unit was always going to be hard for me. After a few minutes, the whole thing abated and we were taken around the unit and I got to see first hand why I was there in the first place. The babies were so tiny and fragile, something Moo never looked. I also clocked the cotspace that Moo had been in. It was painful and healing at the same time.

Pauline mentioned to one of the nurses that my daughter had been on the unit and on hearing her first name, the nurse said “oh you mean,  . . . ” and promptly said her full name! Then she explained that she was on duty that day and remembers Moo perfectly. I said how is that possible with the amount of babies she had looked after ever since. “We remember the ones who cause absolute havoc”, she says. Sums Moo up perfectly.

I am now more inspired to take the pain and frustration of crocheting an octopus. I’ve been crocheting for a number of years now and this is the most technical thing I have ever attempted but every time that I want to give up because it is just so hard, I’ll just picture Amy and Emily, the tiny twins that I just saw, and all the babies like them who need these desperately.


Psyche shifting . . .

I was having a bit of a rough time of it and then some unhinged individual set off a nail bomb at an Ariadne Grande concert in Manchester. The kind of concert my own little Moo would have loved to have gone to. My heart took a battering for all those parents, friends, children who were having the time of their lives, only for it to be shattered into a million pieces by one deranged, brainwashed, misguided person.

Ever since Moo was diagnosed as being on the Autistic Spectrum, I have been going through a rather strange, disquieting period of self discovery where I am suddenly realising that all the strange things that I struggle with and that I have always kept to myself, may actually be completely explicable. I have gained a very real understanding of why I behave the way that I do, why I think the way that I do and why I have this internal conflicting, confused social dialogue. In finding all of this out, I have also started to question who I am and what I actually believe in.

I then heard a man on the radio describe humans as the only animal that built cultures based on what could be described as a story, religion. I also read a line in a puppy training manual that resonated with me which said “human are by nature a very aggressive species”. A biologist once described the human race as a “great mammalian weed” which is, in the context of our history, what we have done and what we continue to do to this planet and each other, stunningly accurate. We might think we are intelligent and above the other animals but we are not. We are animals first, humans second. More importantly, we are pack animals. We need a sense of connection just to function.

All of these thoughts have been milling about my head and I came to a rather psyche shifting conclusion. After 45 years, I have realised that I don’t actually believe in God. I thought I did, I believed that I did, but actually, I used Him like an invisible friend because I have spent so much of my life confused about friendships and people. I’ve spent a lot of my life looking for guidance and, sometimes, a mentor figure. In my darkest times, I needed to feel like there was someone out there guiding it all. I turned to the idea of God because He was always there. Nobody could take Him away from me. I’ve said before that I don’t believe in religion but I do believe in faith. This is not to say that I think that people who believe in God or practice religion are fools or stupid. I think that if it brings you great joy and comfort, then good. Whatever works for you. It certainly isn’t religion’s fault that people continue to kill each other. If it wasn’t religion, it would be something else. After all, it’s just one pack of aggressive animals attacking another.

I think religion served a very important purpose in the past when we were a lawless load of heathens with the capacity to kill each other, willy nilly. The best thing about religion is that, when you take its founding principles, it is designed to make us civilised, to have morals and principles, to have a sense of community and to make us feel connected. That is a beautiful ambition.

The flip side of religion is that it can sometimes take away a person’s sense of responsibility or accountability for their actions or beliefs. The American Indians believed in five different genders until Christians came along and told them they were wrong. Homophobia is often rooted in a belief that it is against God’s law as it says so in the Bible. While all major religions preach peace and love, that ever so aggressive animal, the human, likes to butt heads with each other and say “believe in God my way”.

But I would still classify myself as a person of faith because there is something that I truly believe in and it was shining forth in the aftermath of the bomb explosion in Manchester. I believe in the GOOD. I believe in kindness. I believe in courage in the truest sense of the word: a wise heart. I believe in compassion. I believe in empathy. I believe in inclusion and love and peace and everyone being free to be the person they want to be, religious or not. I believe in the homeless man who cradled a dying woman. I believe in the lady who led 50 children to a hotel. I believe in the nurses and doctors, who were off duty, but went in to help. I believe in the policemen, the taxis who offered free rides. I believe in the capacity of the human spirit to stand up in the face of a horrific act and grow stronger, kinder, more compassionate.

I don’t think any god pushed those people to do those things, I believe it was because that is who they are. They had courage and they were kind.

So it turns out that I am an accidental Buddhist because I do believe that if we all looked inward, instead of outward, for fulfilment and to be the kindest version of ourselves, we would be a lot happier and maybe, just maybe, some of these horrific incidents wouldn’t happen quite so often.


Education is key! Muppets.

I’ve become involved in a local arm of a national campaign for fair funding in all schools. I sort of fell into it as I do. I was volunteered to write the text for a change.org petition and ended up posting it from my account. Next thing I knew, I was part of the team. At first, I wasn’t sure that I had the capacity to take this on but the more I learnt, the more angry I became and now I am so grateful that I am. At least, I am actually trying to do something.

What’s the worry, you might say? Well, here’s a little film that we made to explain a bit about it. You’ll see my very own Moo in there too. So essentially, the “ring fenced” education budgets of schools have had quiet little unsupported additional expenses forced onto them. Well run, inclusive, amazing schools, like Moo’s, are going to go into deficit for the first time ever and will never come out again. So this year, Moo’s school will be in its first deficit of £15,000. Not much, you might think. However, by 2020, in THREE years’ time, that deficit is forecast at £450,000 and growing! That’s the equivalent of 8 teachers. If you want to see what is going to happen to your school, just click here. This is not an exaggeration although I really wish it was.

We held a public meeting on Monday at one of the schools in my area. Both MPs, one Liberal and one Conservative, came and spoke as well as a headteacher from a primary, a headteacher from a secondary, Matt Dykes from the national parent-led campaign and a member of the NUT. Everyone, regardless of politics, agreed that education needs more funding. It was a very successful meeting in that we had set it up to inform parents of what is going on and around 300 parents turned up. One of whom wrote how they felt afterwards here.

In my Greater London area, it’s really expensive to live but we do not qualify for London weighting so our school is funded £4,700 per pupil whereas a school a few miles up the road might be funded £7,500 per pupil because it is central London. Nuts, right? However, I might add that the schools funded like that were failing before the additional funding they received kicked in and now, as a result of better funding, they are soaring. So what was the government’s answer to this? Take the money away from those schools and give it to rural schools who are struggling. So essentially, putting those schools that have worked so hard to raise their standards and need the extra funding to do that back at square one.

As I mentioned, my school receives £4,700 per pupil and funding cuts are about to come in. Now this is where I get really mad. If a school is only receiving £4,700 per pupil but has to find the first £6,000 for every SEN child in their school before they are entitled to additional funding from a Statement for SEN or an Education Health and Care Plan and budgets are shrinking, it doesn’t take a genius to work out that soon enough, inclusion is going to be too expensive for schools. In my school, that’s an additional £1,300 per child! That means that children with physical disabilities who need a carer on site but would otherwise thrive in a mainstream environment, won’t necessarily be able to go to school. Or kids who have learning disabilities but just need a little extra support to access the curriculum won’t be able to go to a mainstream school or will languish at the back of the class, not keeping up. I know this because I asked the question of two headteachers’ at our public meeting. Both schools represented had provisions for SEN kids. The primary head runs a school where 38% of the kids are on the SEN register. She said that she now has to look at a child’s case, considers what that child would need to succeed at her school and whether she will be able to afford the therapy and support that child will need. If not, she can’t accept the child. That is not her fault. That is the real effect of  a lack of funding.

And it’s not just the SEN child that suffers. My daughter’s peers have gained so much from her inclusion since Reception. Not only have they had additional LSAs in their class but they have learnt from a young age that not everybody is the same. That different does not mean less and is not something to be derided, abused, discriminated against. They are more rounded individuals because they have learnt compassion and empathy from a very young age. Their generation is our future society. If mainstream schools can’t afford SEN kids, there will be more division, more discrimination because us, humans, are not anything if not predictable. What we don’t know, understand or are exposed to is unknown and fear of the unknown breeds prejudice. I don’t want my daughter to live in that kind of society. When we are in the age of celebrating the Paralympics as much as the Olympics, when disability access is something hard fought for, I don’t want society to go backwards. I don’t want future generations to miss out on being more rounded people. We need a more compassionate society and this is one of the easiest ways to build one.

So I am left feeling frustrated as hell. Not enough parents are getting involved. The government is very dismissive of teachers’ concerns. They say that they are over reacting but I know that they are not. They can say what they like but schools are at a tipping point. After five years, Moo’s school is no longer able to afford her two carers at all times. Next term, she goes down to one. There are schools where teachers are taking study materials home to photocopy them for students because the school can’t afford the paper. One of my fellow parents just donated a whole box of glue sticks to the school. And if we do nothing, there will be bigger classes, there will be reduced selection of subjects, there may even be shorter school weeks. I feel for those kids who aren’t the most academic but are phenomenal artists, actors or musicians because those will be the subjects that are cut first.

And who would be a teacher in this environment? Why are teachers so undervalued? They are the ones teaching our future doctors, scientists, lawyers, leaders. They must have the patience of a saint. I couldn’t do it. Why isn’t teaching a recognised, respected and well paid profession like being a doctor or lawyer is? It seems madness to me.

So if you read this and feel like you want to help, I beg you, please click here. Sign the petition, fill in the consultation before 22 March, write to your MP. The whole process might take an hour of your life and it means that, in five years’ time, you can look into any child’s eye and know that you did something, you didn’t sit back and let it happen. Let it be known that we demand a fairly funded education system where every child gets a good, appropriate education. They deserve it. At the end of the day, if you want a world class education system, then you have to pay for a world class education system, and, without it, how is our society meant to progress?




Peace, at last . . .

Around five years ago, I was having counselling through Shooting Star again. I was working through some personal issues, one being my inner critic that I had drawn in the shape of a vulture from the Jungle Book. How messed up is that?! However, in one session, I spent the whole time crying and was very, very quiet. I barely spoke. I remember the counsellor asking me how I felt, despite the tears, and I replied “peaceful. It feels lovely.”

“This is the real you,” she said. “I’ve seen glimpses of it in our sessions but, now, all your walls are down and this is the real you.” I started crying all over again.

“It’s been so long since I felt like this.” And I was scared. I knew that, once I was out the door, I wouldn’t be able to stay there, being the authentic me. I was right. Within an hour, the walls had shot back up and I couldn’t get back to that place in my soul that felt so peaceful.

I even had hypnotherapy to help me, which it did . . . for about a week.

The thing is that I have a phobia of vulnerability and, boy, did I feel vulnerable. Somewhere, in the recesses of my subconscious, long ago, it was decided that that person was not safe in the outside world and a new persona was built to protect her, my social persona. Everyone knows me as outgoing, I am an extrovert after all, and chatty with it. I use talking as a defence mechanism. If someone chats a lot, there aren’t any real reasons to ask questions. An old friend once said that when he thought of me, he thought of me always talking but when he asked himself what he knew about me, he realised he didn’t know very much. I’m very selective about what I share. It’s one of the reasons why I am so good at keeping secrets, no one expects me to be.

My social persona is modelled on my mother’s side of the family, where everyone is very expressive, charismatic and personable. They are such a fun family to be a part of and I love them dearly. They attract people. So I learnt how to be like them, how to manipulate the parts of my personality that I inherited from my social, loud, hostess with the mostest mother. I have always been fascinated by what makes people tick, what makes people behave the way they do, make the decisions they make, say the things they say. Given this interest, it wasn’t hard to create an alternative me. I was fifteen when my social persona got set in stone and I no longer could access the other part of me. Until that day in the counsellor’s, I had always thought that I had been freed that day when I was fifteen and snapped. Alas, it turns out the opposite was true; I had been imprisoned.

The thing about not being authentic is that it is exhausting. Utterly exhausting and it feeds depression and anxiety. Every time that I went out and partied, I would need the next day to myself to regroup. I love socialising, I love being with people, but it does drain me, trying to be upbeat, entertaining, likeable. Always has. That’s one of the reasons that I love books and film so much. It’s like attending a party but not having to leave home.

You see the thing is, I have never felt like I fit in. I always felt different. (When I was diagnosed with OS-CS, I thought that was why I felt different. It wasn’t.) Growing up, I used to wonder if I was adopted. I would be severely reprimanded by my mother for doing something naughty but did not always understand what I had done that was so bad. I still have those misunderstandings to this day. I don’t always understand why people get upset about stuff.

My mother and my sister live very much more in the moment. They tend to make more emotional decisions, which is not a bad thing, just different to me. Recently, we got into a heated exchange on Facebook, never a good idea. I understood my sister’s point to a degree. I still don’t understand my mother’s. I deleted the post in the end because it wasn’t doing any of us any good. However, I do not regret the post and the ruckus it caused because it had a remarkable, unexpected effect. It fixed me. After 30 odd years of living inauthentically, in the middle of our exchanges, I suddenly thought “I’d rather be me”. I realised that I have always felt substandard in comparison to them. I don’t connect instantaneously with people they way they do. I can fake it but I don’t feel it. I have great friends, don’t get me wrong, I am blessed, but it takes a long time for me to feel genuine friendship. I’ve only had one or two occasions in my entire life where I have felt an instant connection to someone. I sense people finding the social persona me “too much”. Yet, if I tried to stay quiet in a group of people, I was filled with such intense social anxiety, the only way to release it was to start talking. And I can’t read all the emotional cues. I struggle to recognise and correctly label my own feelings, never mind someone else’s. I can be incredibly rational and logical about things, feeling the need to point out the potential consequences of actions. I struggle with theory of mind and cognitive empathy. I am honest to a fault and I say what I mean. There are no “between the lines” with me, I am literal and, although I understand and use sarcasm, I tend to take things very literally. I suffer from selective mutism. I am tactiley defensive and my auditory processing is downright shocking. I am a visual learner. I am a big picture viewer. I can connect dots quickly. I live in my head a lot. I am constantly analysing. I can’t turn my brain off easily.

I’ve spent most of my adult life disconnected from my true self, like a split personality. The two personas are not so different, it’s just that one has the “social, bubbly” part turned up way too high. I am absolutely enough exactly as I am, wobbly bits, autistic traits, extroversion, grey hair, melasma, quiet reflection and all. I have my mother and my sister to thank. Finally, I feel like I don’t need their validation. I’m 44 and I didn’t even know I was looking for it. I feel whole again for the first time in decades and, for that, I will be eternally grateful.

PS AND it put me off Facebook, which is a godsend. I was way too addicted and I knew it. Now I have time to read, write and crochet octopi for the local neo natal unit. I do still share articles, especially from The Mighty, in case it might help someone else. I love The Mighty. I still check Facebook occasionally because I support other tracheostomy families through it and I like the memories section but, otherwise, I don’t go on. I’m free! Whoop! (Let’s hope it lasts.)


Desperately seeking to understand . . .

. . .  but I just can’t. The last week has been a tough one for a lot of people. I am struggling to come to terms with both Brexit and Donald Trump. I can sense in my bones that things are going to get rough all round soon enough. However, my spirits were lifted by the women’s marches all around the world. Peaceful and respectful on the whole, families stood united in voicing their concern about the future.

This morning, when reading Facebook, I saw this post from my cousin. Now, I know that she is a Seychelloise born Republican and that we have opposing political views. That is absolutely fine. The world would be a very boring place if we all believed the same and thought the same way. The world is beautiful because of our diversity: views, skin, gender, sexuality, they all matter.

So, here’s the post, it’s a long one:

For the snowflakes .. I did not write it. I asked permission if I could borrow it. 

I am not a “disgrace to women” because I don’t support the women’s march. I do not feel I am a “second class citizen” because I am a woman. I do not feel my voice is “not heard” because I am a woman. I do not feel I am not provided opportunities in this life or in America because I am a woman. I do not feel that I “don’t have control of my body or choices” because I am a woman. I do not feel like I am ” not respected or undermined” because I am a woman. I am not a “victim” because you say I am.
I AM a woman.
I can make my own choices.
I can speak and be heard.
I can VOTE.
I can work if I want.
I can stay home if I want.
I control my body.
I can defend myself.
I can defend my family.
There is nothing stopping me to do anything in this world but MYSELF.
I do not blame my circumstances or problems on anything other than my own choices or even that sometimes in life, we don’t always get what we want. I take responsibility for myself.
I am a mother, a daughter, a wife, a sister, a friend. I am not held back in life but only by the walls I choose to not go over which is a personal choice.
Quit blaming.
Take responsibility.
If you want to speak, do so. But do not expect for me, a woman, to take you seriously wearing a pink va-jay-jay hat on your head and screaming profanities and bashing men.
If you have beliefs, and speak to me in a kind matter, I will listen. But do not expect for me to change my beliefs to suit yours. Respect goes both ways.
If you want to impress me, especially in regards to women, then speak on the real injustices and tragedies that affect women in foreign countries that do not that the opportunity or means to have their voices heard.
Saudi Arabia, women can’t drive, no rights and must always be covered.
China and India, infantcide of baby girls.
Afghanistan, unequal education rights.
Democratic Republic of Congo, where rapes are brutal and women are left to die, or HIV infected and left to care for children alone.
Mali, where women can not escape the torture of genital mutilation.
Pakistan, in tribal areas where women are gang raped to pay for men’s crime.
Guatemala, the impoverished female underclass of Guatemala faces domestic violence, rape and the second-highest rate of HIV/AIDS after sub-Saharan Africa. An epidemic of gruesome unsolved murders has left hundreds of women dead, some of their bodies left with hate messages. Or the 7 year old girls being sold or married off to 60 year old men, Or the millions of women sold and bought into sex trafficking.
And that’s just a few examples.
So when women get together in AMERICA and whine they don’t have equal rights and march in their clean clothes, after eating a hearty breakfast, and it’s like a vacation away that they have paid for to get there…
This WOMAN does not support it.

I read this and my immediate reaction was to get angry. Then I stopped myself because an emotional reaction will do me no good in my effort to understand what she is trying to say.  So I stopped and thought about it.

The person who wrote this post may not be able to spell ‘infanticide’ but she raises some very valid points. There are far worse atrocities happening to women around the world. And she is ok. She feels that she has power of herself, her body and her life, which is great. All power to her. You know what, I also feel that I am in charge of my own destiny, that where I am now is a direct consequence of the decisions I have made in my life. I, too, take full responsibility for my life, the things that I do and the decisions that I have made. Here’s the rub. Some things are, inevitably, out of my control and my life is not just about me and what I can get out of it.

The thing is not everyone feels that way, or if they do, they are very scared that they may not be able to in the future. And the women’s marches took place all over the world, not just in America. They were marched by women, from all backgrounds, not just the middle classes, but they were for all the people who feel marginalised by this president. They were marched for the Muslim women who are too scared to wear their hajibs because of the way Donald Trump legitimised anti-Muslim sentiment. They were marched for the disabled kids whose education is being put into the hands of a woman who hasn’t even read the law that protects their educational rights and seems hell bent on creating an inequal education system. They were marched for the millions of women who rely on Planned Parenthood for their women’s healthcare. They were marched for the millions of people who are about to lose their healthcare altogether through the repeal of the Affordable Care Act. They were marched for the millions of legal immigrants who no longer feel welcome in their own country. They were marched for the LGBTQIA community who are always targets.

We are talking about a president who was caught on tape bragging about sexually assaulting women and who then dismissed it as “locker room talk”. As if that should be acceptable in the locker room. As if that should be acceptable anywhere. So there is now a president in the White House, who young men look up to, who has said that it is okay to a) brag about being a sexual predator and b) men can say what they want between themselves and, therefore, fuel that kind of behaviour and not be held accountable. For crying out loud, he said he would have married his daughter if she wasn’t his daughter because she is so beautiful. (She is but I am pretty convinced that there is far more to her than looks.) We have a president who clearly objectifies women and that should scare you. It might not affect you directly, but that will affect your daughters and your granddaughters as they grow up and are having to deal with the aftermath of sanctioning that kind of behaviour.

I don’t hate Donald Trump. I don’t know the man and hate is a very negative, soul destroying sentiment. I don’t hate anyone. I don’t have time for hate. So I have based my opinion of him on what I have seen of his campaign, his tweets and his rhetoric. And I have been deeply offended on so many occasions. Here is a man who ran his campaign on division. He turned against the entire Muslim community, the Mexicans, he has admitted to sexually aggressive behaviour, he clearly objectifies women, he mocked a disabled reporter and has started repealing the Affordable Care Act. So millions of women don’t feel ok, they don’t feel in control of the bodies or their lives. If they lose their healthcare and Planned Parenthood, how can they?

Donald Trump is mercurial, to say the least. He is also deeply insecure. He spent his first speech denigrating the media and accusing them of lying regarding the attendance of his inauguration. He threw his toys out of the pram. Surely, SURELY, he had more important things to worry about then the size of the crowd. He had just become President of the United States! He claims to be a strong leader but that is just the behaviour of someone who is indescribably weak. He says one thing, behaves one way and then completely denies it in the face of hard, physical evidence. Where is his integrity, where are his beliefs? He has shown time and again that he is an egomaniac, if not a complete narcissist. If he is a narcissist, we should all be terrified. Narcissists have a complete lack of affective empathy. That means they can not emotionally relate to another human being. Period. Imagine that. Why should he care about poor people? He’s not poor. Why should he care about mental health? It doesn’t affect him. Why should he believe in climate change? That might damage his businesses.

Yes, I am a middle class American living in London, having just eaten my warm porridge and drunk my coffee. Yes, I have healthcare, thanks to the NHS. Yes, my life is good. So by the tone of my cousin’s post, I should keep my mouth shut. I won’t. Just because my life is blessed, does not mean that I can’t appreciate that others are not in my fortunate position and try to help them. It does not mean that I can’t voice my concern that so many are going to be worse off. There is a world beyond me and my bubble that I care about. Even if I myself would not have an abortion, I would fight for other women to have that right. I have been a member, in my time, of both Amnesty International and Greenpeace. I recently started a petition, with friends, to pressure the UK government into addressing the funding crisis in education, even though my child is about to leave the mainstream and won’t necessarily be affected.

These marches were not about slagging men off or being violent. They were marches against the fear that Donald Trump inflames. It was about inequality. The problem is that we don’t know what his policies are. There were none in his campaign bar, make America great again, build a wall, drain the swamp and ban all Muslims. We had to go by what his tone was, what he encouraged, what he deemed appropriate. None of it was good. None of it was kind.

It’s not about me. It’s about us. It’s about what kind of people do we want to be, what kind of future do we want for our children and who do we want to lead us there. Marching when we are not happy is exactly what we should be doing. It is an expression of democracy. It’s called freedom of speech. It is taking responsibility for our futures, our countries, our rights and using our voices to express just what we want, what we think, what we want to protect and what we want to change. It is speaking up for those who do not feel that they have a voice. It is asking to be heard. Without public protest, we would still be living in the Dark Ages.

As for the atrocities around the world, the only way to stop those is through international pressure from other countries, but you have to have a leader who is willing to look outward as well as inward to do that. And just because you are not suffering in those countries does not mean that you should accept when you feel marginalised in yours. That’s like saying my friends shouldn’t confide in me about their worries for their children just because their children are not as disabled as mine. That’s bullshit. If I had that attitude, it would display a complete lack of compassion on my part. Luckily, I don’t.

Finally, I don’t get the snowflake reference. Is it meant to be derogatory? If so, it’s a rather odd choice. Snowflakes are stunningly beautiful geometric designs, each completely unique. They are battered by winds and, yet, despite looking fragile, they remain unbroken. One can’t do much on their own but when they gather in their millions, they are devastatingly strong, killing anyone in their path when they move. It’s called an avalanche. And, although, you may think they are white, they are actually colourless. Snow itself is white simply because it is devoid of any colour. So if this post makes me a snowflake, thank you for the compliment.



Wow! The courage . . .

I am not a regular Coronation Street viewer but I have seen articles regarding the storyline involving Michelle losing her baby later in pregnancy. Naturally, I have tended to avoid such storylines in other shows as it does bring back painful memories. However, on this occasion, I have followed it in the press in sheer amazement. Kym Marsh, the actress who plays Michelle, actually lived through this very horror in 2009 when she lost her son, Archie. Here she is, 7 years later, reenacting the same thing happening to her character.

Acting is putting yourself in the shoes of your character and living, not pretending, someone else’s life. When that life takes a dark turn, you live it. Otherwise, it’s just not an authentic performance. When your own life has put you through hell, where on earth do you find the strength to reenact your darkest days? Kym was involved in the storyline and was given choices along the way. There was a counsellor on set during the filming to make sure she could cope. She wanted to do it, to raise awareness of babyloss. Even with all of this, I can’t imagine what she went through to deliver this performance.

I watched it. I steeled myself for the memories it would bring back, but I watched it all the same. It was so real. And I remember feeling the same way she feels, although I didn’t scream as I’d had a few days to come to terms with losing him. I even remember the urge to lie down with Ziggy and just staring at him. At one point, I fell asleep from the exhaustion, only to wake up with a start and feel guilty for having wasted precious time.

I can only commend Coronation Street for working with SANDS in dealing with such a tragic storyline and highlighting what so many mothers go through each year. I have, in the past, had my loss of Ziggy belittled and somewhat dismissed by some, as if the loss of a baby in pregnancy is not of the same import as losing a baby at term or a living member of family. It’s not the same, it’s different, but that does not make it less. Nearly 12 years on and I still think of him every day. That will never change. There will always be a gap in our family that we live with. There will always be an ache to hold him. It’s just the way it was meant to be but it does not dissipate with time. Showing the experience as they did can only build awareness of what parents endure and the scale of the loss.

We’ve told Moo about her angel brother and she does talk about him. She wishes he was here so that they could share bunk beds. Just the other morning, she announced that there should be six of us, not five. There should be Daddy, Mummy, Ziggy, her, Nessie the cat and Sofia the hamster. I have explained to her that he was very sick, more complicated that her, and was never meant to live. Ziggy is part of our every day. Talking about him does not make my grief worse. If anything, it makes me ache just a little less because he is not forgotten.

So thank you, Kym Marsh, for your courage and self sacrifice. I am in awe of you. I don’t think I could have done that. Living through and with that grief once is enough for me. Thank you, Coronation Street, for your sensitivity and for being so true to the experience. Thank you for trying to break the taboo and starting a discussion of what it means to lose a baby.

Get the tissues. If you want to watch the scene, click here.


Happy New Year, one and all.

I hope you have all had a lovely festive season and were fortunate enough not to have had a panic inducing weight gain like I had. These things happen and, armed with my new trusty Fitbit Charge HR 2 and a photo of the current state of my stomach, I shall be back to my svelte self within a month.

I wish that this could be a happy post but, alas, I am upset again. I recently started following The Mighty which I highly, highly recommend. It is such a wonderful site, dedicated to encouraging understanding and support on a range of issues to do with health. The tagline “We face disability, disease and mental illness together” just about sums it up. Even if you do not have to deal with these issues, reading the articles written by those touched by it can only help to breed understanding and inclusion. There are also great articles on how to help people in those situations as well as ones of gratitude to those who have unwittingly made a huge difference. I, myself, have learned so much.

This morning, on my Facebook page, there was an article that started with the line “I’m Only Having One Child Because of My Mental Illness – and That’s OK“. The title was enough to set me off. I read the article out of curiosity but I was already feeling my high horse riding into view and my legs were getting jumpy. Quite frankly, why is this woman feeling like she has to write this article? I’ll tell you why: because when you say you are only having one child, some people will try to convince you otherwise or give you a strange look like you are causing your child harm by making her or him a singleton. I should know. I’ve had that conversation with people. Short of saying “well, if you hit perfection the first time, there’s no need to try again”, I tried to be polite. Most people assume that the reason we didn’t have another child is because of Moo’s medical issues but if I really wanted a second child, that wouldn’t have stopped me.

I did look into egg donation and ended up having a conversation with someone who asked the one question that I don’t think gets asked enough: “do you want a second child the way you wanted a first?”. For me, the answer was no. I wanted another child because I couldn’t imagine what being an only child would be like. I couldn’t imagine a life without my sister or brother. I wanted my daughter to have that kind of relationship. As was pointed out to me, you can’t force a close bond between siblings and I know too many cases where siblings are not in touch because they just don’t get on or have nothing in common. Having another child as a playmate for the first is not a reason to bring a child into the world. Every child deserves to be desired the way I desired my first. I was utterly driven in my need for a baby. I would have walked over hot coals, I would have tried everything to have her or I would have adopted. I was desperate to be a mother and have a baby. Turns out that once I had her, I didn’t need or really want another.

I have a dear friend who went through hell to have her first child and then, subsequently, had a very similar hellish experience in her quest to have a second. I remember talking to her and asking her “why are you doing this? Why are you putting yourself through all this heartbreak and heartache?”. Her answer was “because I want a second baby the way I wanted the first. I am aching for one”. When she said that, I had two thoughts: 1) “well, then, I have your back.” and 2) “oh, thank God, I don’t feel like that!” Thankfully, she went onto have the cutest little boy and her family is complete.

The fact of the matter is that the size of one’s family is no one else’s business. Why do people think they have the right to condemn such an intimate decision? You know what, couples who decide not to have children are not going to regret it later. I bet they took making that decision very seriously. I admire people who decide not to have children. They know what they want in their life and kids are not it. At least, they aren’t bowing down to the pressure society seems to put on people and having unwanted, unhappy kids.

As for only children, it might shock people to know only children are not lonely children. It depends on the parenting. That deeply entrenched belief in society is based on research that took place at the end of the 19th century and has been disproven over and over again. Research has proven that only children do equally well in social situations and education, if not better. And one of the reasons is because they often have a stronger self esteem, which in today’s society is somewhat key to survival. If you don’t believe me, I highly recommend you read this book which gives a very balanced view of being and raising an only child: Parenting An Only Child. The author has spent over a decade studying only children and has raised one herself.

So the message here is the size of someone else’s family is none of our business and we should not condemn them for their decision of how many people to bring into the world. Being an only child is not torture. These children do not suffer as a result of no siblings. For a start, they have no sibling rivalry to contend with. Childless couples may or may not have had a choice as to whether they had children but their lives are not any less rich than those of us with kids.

And, yes, when I found out that a friend was going to have her fifth boy, I did think “oh my word! Has she lost her mind?!” but that was a reaction based on my experience of parenthood and how hard I find it. She, on the other hand, clearly relishes it and wants a big family. Good on her. Each to their own. And I swear that she’s one of the most beautiful pregnant people. This is her fifth! By rights, she should look like a big bloater with puffy ankles and the works, but no. She’s positively glowing with a nice tidy little bump. Post Christmas, I look more pregnant that she does and she’s due in March!




Words, words, words . . .

Yesterday, I got annoyed. Nothing surprising there. I jumped up onto my high horse and took a ride. What annoyed me were memes being posted regarding Christmas. After what has gone on this year, it was the last straw on my haystack of annoying memes that I have seen this year. I posted on Facebook about it and set off a discussion about who we should and should not be wishing a Merry Christmas to although that is not what my point was meant to be about, nor did I intend for people to immediately start defending their faiths although it did accurately prove how powerful a meme can be and how fast a point can be misunderstood and swept away. A few people said that I should just focus on the sentiment behind the message and that is when I started thinking. Should I just focus on the sentiment? Isn’t that the problem?

See, the thing is words have power. They are not just semantics. They can be used as weapons. Just ask any mother whose child says they hate them if that didn’t sting despite knowing that their child didn’t mean it. We read a meme, emotionally connect with it and immediately share it. The people that share the memes that annoyed me are good, loving people. They wouldn’t mean harm to anyone and they are definitely not in any way meaning to disrespect another person’s beliefs. I know that so why am I still irritated? (And to be very clear, I am annoyed by the memes, not the people sharing them.) As my mother pointed out, these memes have been around for years. It’s not just religious memes; it’s political ones, it’s activist ones, it’s all of them. I’ll tell you why I am still irritated, because there is a very big difference between:

“Share if you believe that Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays.”


“Share if you believe that Christmas is about celebrating Christ and wish everyone a Merry Christmas or Season’s Greetings, depending on their beliefs.”

The first has a tone of condemnation if you don’t do their bidding (the word ‘should’ should be banned from the English language) and the second is more inclusive of those who don’t share the same faith. “Why is this so important to you?”, you might ask.

I won’t go into every reason why this is important to me but here is the headline. Your subconscious is listening to everything you say, read or do. It hears words. It does not judge the words as right or wrong, good or bad. It just hears them and embeds them into your belief system. So if you shout “I am enough” over and over again, you’ll find that your self esteem will raise simply because your subconscious is listening and says “ok, I am enough”. Sounds very simplistic but is amazingly effective. I should know, I’ve been controlling my depression and anxiety with that simple phrase for the last nine months. I’ve also been telling myself that “I have phenomenal coping skills”.  It works. I’m coping a lot better than I have in years and I don’t feel so overwhelmed so easily. (Thank you, Marisa Peer.)  The same works if you use the phrase “I want, I love, I enjoy” even if you don’t. Eventually, your subconscious will go “ok, I want, I love, I enjoy . . . ” and you do.

So, if you read a meme or article that emotionally connects with you, but don’t pay attention to the way it is worded or what it could be really saying, you are planting tiny seeds into your subconscious that you may not intend to or even be aware of. In your conscious mind, you are thinking “yes! I believe that Christmas is about Christ”. Your subconscious hears “Christmas is about celebrating Christ and we should be wishing everyone a Merry Christmas, not Season’s Greetings or Happy Holidays”. There is a divisive tone to what your subconscious hears. In the worst case scenario, one day, some demagogue comes along and starts to play with all those tiny seedlings that you don’t even know are there and, before you know it, you are voting for someone who you would never have voted for before. Some good, honest, intelligent people voted for Donald Trump, after all.

There are so many memes and articles bouncing around the internet and we share them because they resonate with us but we really must pay attention to how they are written, what they are really saying. They seem harmless but we need to be careful. When you see things like these over and over again, they can have an insidious effect without us even knowing about it. On the face of it, an article about a troll being put in their place appeals to our sense of justice and makes us feel vindicated but, when you stop and think about it, it is really an article about a bully being bullied. That’s not right.

Are they written in a tone of kindness, of inclusion? Feel free to share those bad boys. Could they be perceived as divisive, condemning, “I’m right, you’re wrong”? Stop those in their tracks. We don’t need “them” and “us”. Different does not mean less. I won’t even share a meme that says “Share if you think Donald Trump is an idiot” because that is essentially mass trolling. For the record, Donald Trump is not an idiot, he’s very clever in an extremely narcissistic way. He may be a misogynistic, racist bully but he’s not an idiot.

We must pay attention to the words we use and share. I never really thought about it until this year when I started to wonder how did we get to where we are. Words are how we communicate, how we express ourselves. They are the only tools we have to show who we really are and what we believe in. If we use kindness as our base line for all communication, then we should be able to communicate anything, including our faith, our beliefs, our stories. For the record, I love to hear about my friends’ and family’s beliefs, faiths and what they are doing. It’s who they are. The more we share and listen to with an open mind, the more we can understand. Understanding can lead to respect, tolerance and inclusion and that has got to be a good thing.



Being Harry Potter . . .

I was reading that JK Rowling fell off the billionaires’ list because she gave too much of her money away to charities. Good woman. It triggered a thought in me. Without meaning to trivialize the struggles, having a child with complex medical conditions or special needs is a bit like being Harry Potter in a world full of muggles. You get by the best that you can but your difference makes you feel a little bit isolated, a little bit disconnected, a little bit battered by life. You fight your own personal Voldemort on a daily basis, whether that is just trying to keep your kid healthy, trying to get them the best support you can or, often in hospital, just getting the doctors to put their egos aside and listen to you. Sometimes, it’s not letting everything get on top of you and push you into a dark hole. Sometimes, the battle is just trying to figure out whether your child is genuinely having a crisis or being a typical 9 year old and trying to pull a sickie. (Just got called to pick her up from school. Apparently, not a sickie.)

Then you go to somewhere like Shooting Star House or Christopher’s and, all of a sudden, you are in Hogwarts. Everyone understands. Everyone is different. These are people who fundamentally get what you deal with, even though their battles are different, even though their Voldemorts are different. Here, your child is normal. Here, everyone is magic. Here, you won’t get platitudes. Here, you won’t get “I don’t know how you cope” or “I couldn’t deal with what you deal with” or “I think you are amazing”. These comments are meant to make you feel good and you appreciate the kindness behind them but they still irritate. What else are you supposed to do? You are not superhuman, you are just a parent, like them. Here, a concern is not dismissed as something any child goes through.  At Shooting Star/Christopher’s/Hogwarts, we get to chat, play, relax, bond in an environment where we are not different in any way. You can’t underestimate the restorative power of that.

Parents of children like mine are so blessed, even though, unlike Harry, we don’t have a magic wand. It’s not an easy life, by any stretch. It takes a long time to grieve for the child you thought you were going to have. It takes a long time to come to terms with the hand that your child has been dealt. In my case, I’ve been through those processes over and over again. I anticipate having to go through them again. It’s like living as if you stand on quicksand, all day every day. Each time you go through those painful times, you can come to a place on the other side where you are eternally grateful, even though the knocks keep coming. It takes a conscious effort, a conscious decision not to get angry, bitter and twisted about it all. These children teach us so much and enrich our lives in a way that cannot be described. We live in an alternate universe, where there is much pain and suffering but, equally, there is much more joy and gratitude. It’s a life of extremes. The smallest achievement is huge. There are so many celebrations. The superficial is irrelevant. You learn to let go of the small irritants of life and focus on what is really important because we know it can be snatched away in the blink of an eye.

This is not to say that people without special needs kids don’t know what is important in life. It’s not to say that they don’t know how precious life is. They just know it in the way that we all know that one day we are going to die. It’s something we know but it’s far off and not thought about because it’s not imminent. It’s something on the distant horizon that does not need to be considered regularly. It’s the way that some people live their life in a way that endangers their health and greatly increases the chances of them dying prematurely but, until someone says to them, “If you don’t change X or give up X, you will be dead in six months”, they won’t do anything about it. Or it’s the way they read a meme that says “live each day as if it’s your last” and say “so true”, then carry on life as normal, even if they are not happy with said life.

How can I get frustrated that the window sill in my kitchen isn’t perfectly level or that the boiler doesn’t fit my cupboard perfectly, things that would have driven me crazy ten years ago, when my daughter could drop dead of a stroke at any minute?  I don’t like to think about it but it certainly gives you perspective. I’ve probably gone too far the other way. It’s hard to get stressed about things these days. ‘Things’ being the operative word. People and pets are worth the energy; things, not so much.

This is the life I lead, I didn’t choose it but I wouldn’t have it any other way. It’s really hard. So yes, I’d compare having a child like mine to being Harry Potter. Harry Potter could perform magic and walked around in a world of people who couldn’t, people who didn’t even know of Voldemort’s existence. Moo is a walking miracle, she IS magic and I am so very grateful to be able to walk in her world and the world of kids like her. I kind of feel sad that not everyone can personally experience what it’s like to have a special needs child and  its beautiful bittersweet wonder.