My Husband’s Story: I didn’t even feel I was normal

My name is Nigel and I was diagnosed with autism at 59.

I always felt I was different right from my teenage years. It’s hard to describe but I didn’t even feel I was normal.

I hated school. It was a real struggle and so hard. I didn’t go to anything at school, clubs and such. I had no true friends. I was just different and invisible. I felt like I was always passed over. The only subjects I was remotely good at where physics and chemistry. Maths was a mystery but then I had a PE (physical education) teacher teaching me who had no idea about maths herself. I never did understand that one.

I was horrendously bullied at school. Every single day. Kids beat me up, kicked me and pushed me. All I remember about school was being black and blue from the other kids.

I think my difficulties and struggles were overlooked as I had a physically disabled sister who was number one priority in the house at all times.

I collected stamps for years and liked photography but it was frustrating as with just 50p a week what can you really collect?

After school I worked in a supermarket for years. It was just a job; somewhere to go really. I had work colleagues but no friends there either. I only left that job when I moved from Wales to Scotland to do a course. I had no idea that would be the last job I would get for many years. I can’t do forms, I detest them with a passion. I have a speech impediment which means I’m rubbish at interviews. I can do the job but few ever saw that bit.

I hate change of routine. If I do the grocery shop any day but Thursday I get so confused. I struggle to shop anywhere but Tesco as other shops are laid out differently, smell different, look different and don’t sell Tesco products. I would be wondering ‘will I like that?’ , ‘Will it be as good as the Tesco brand I know?’, ‘where is the the sell by date?’ I know where that is on the Tesco product.

If something doesn’t work in my routine I am so thrown out not just for that day but days later.

If I am geared in my mind to park in one place and there is no spaces there I can’t think of anywhere else to park so I go home. That may sound strange but it’s just how I am.

It wasn’t until my son was diagnosed with autism when he was three and I reluctantly went with my wife to a course that I started to think the course was talking about me and not my son. It was like an awakening to think maybe I actually had something that was making me different after all.

People always had the attitude ‘oh that’s just Nigel’ and would ignore me, ‘he doesn’t know anything’; people never give me any credit.

I have been depressed since my teens but no-one really thought about it. They would say ‘what do you have to be depressed about?’ I’m been on medication for 5 years now. I’m still depressed it’s just some days I have good days and others bad days.

I have two autistic children but that doesn’t mean I can help or understand them any more than my wife who is not autistic. In fact caring for them exhausts me due to my own depression and autism and the fact I have a hearing impairment.

I hate being interrupted and the children interrupt with demands, screaming and needing attention so much. It gets too much. If I cook dinner and you interrupt me by phoning I can’t concentrate to cook dinner. I just can’t.

I’m allowed to struggle. After all if I didn’t struggle with certain things in certain areas I would never have been diagnosed would I? Isn’t that the whole point of autism?

But I have a strong faith, I love my wife, I adore my kids, and I get by.

Maybe if I had been diagnosed sooner things could have been different?

I don’t know.

I just hope my children don’t struggle like I have.

I hope the world is kinder to them.

Nigel.

Advertisements

He is there

imageCompanies often have silent partners. Many businesses and charities do too. It is a highly successful strategy that brings stability, maturity, and grounding to an organisation.

Yet people are quick to judge when it seems a marriage has the same balance.

Sometimes I go to meetings for my children on my own. I send emails on my own and answer and make phone calls mostly on my own.

But that does not mean I am truly on my own. You may not see him, but my ‘silent partner’ is there. My children have a father. I have a husband.

And there is a reason why he is more ‘behind the scenes’ than some people would like.

Everyone copes differently. That does not mean that any one way is right. And we all have different strengths.

I find social situations quite enjoyable. My ‘silent partner’ does not.
Meetings rarely make me nervous or intimidated. My soul mate finds them heavy, frustrating and stressful.
I find talking openly about my children’s difficulties fairly straightforward. Communication is one of my strong points. My husband finds this difficult and draining.
I quite enjoy form filling. For my partner this is like sticking pins in himself.
I find multi-tasking comes as second nature. For my lover this is confusing and he would much rather finish one task before moving onto the next. Interruptions like unexpected phone calls, cancelled meetings and children’s illness cause him to become anxious and flustered.
It is second nature to me to put the ‘right’ jumper on the right child, make sure the food is not touching on the plate, and do up the buttons on their coat in the ‘right’ order. But the stress of ensuring things are ‘just right’ for our autistic twins can become overwhelming for my husband. The slight change of detail can throw either one of our children into a screaming meltdown that lasts all night, so his fears are both real and understandable.
Homework is a mystery for my partner. He struggled though school and finds modern ways of doing things confusing.
Dealing with a screaming child who can not speak limits my partners patience. And I totally understand that. I am far from perfect and my patience runs thin at times too.

It doesn’t help that both our children have complex needs. They both thrive on routine and have rigid ways of doing things. They are more relaxed when the same person does the same thing everyday. They need the same words used, the same voice, the same physical touch and way of doing things. So they both cling to mum as if their life depended on it. In many ways it does.

But they know, just as much as I do, that dad is still there. He may seem in the background. But he is there.image

Some of you will be saying right now that my ‘silent partner’ is just a typical man. Some may be annoyed he is leaving more to me. Some of you may even wonder if he understands it all. A few may even feel he doesn’t care.

Let me tell you something: He cares. He loves. And he sees. He is very much here.

But there is something I feel people should know about this very important ‘silent partner’ in my life: My husband has neurofibromatosis type 1. The exact same genetic tumour producing condition our son has.

Some of his struggles are due to his upbringing, his personality, his age, or his lack of support in school. But some of it is because he has NF1. That affects his way of thinking, his behaviour, and his personality. It is part of him. It makes him less confident, means he struggles more with some academic things and he may seem less social. It is all too easy to judge his ‘silence’ as lack of caring or interest. That could not be further from the truth. I never knew he had NF when I married him. But even if I had it would not have affected my love for him.

Sometimes the most amazing support comes from someone just silently holding you, listening as you pour out your heart. Often that silent partner is the one with the wisdom, insight and calmness to hold it all together. Sometimes the most powerful thing anyone can do is just be there.

He has neurofibromatosis. He isn’t as ‘in your face’ as I am. He isn’t as known to all the professionals dealing with our children as I am. He doesn’t write in the home school diary, or read the bedtime story.

But he does something very important. For me. And for his children.

He is there.

And we all love him.

image

Why can’t they take away his tumours?

I try not to think too much about my child’s medical condition. His classic autism I can deal with (well most of the time anyway), even the fact that at six years and six months old he has no language is just about bearable. The fact he has global delay and has the understanding of a young toddler is hard, but something that might improve. But when I talk about the fact my child has this condition called neurofibromatosis type 1 my heart still breaks, even though we have been living with it for over two years now.

This is not easy to write about but if it helps just one person then I feel I have to talk about it.

This handsome boy, full of life and energy and mischief, has a body that keeps making tumours!

imageAnd there is absolutely nothing I can do about that!

You see I know about autism. I can sit with him and work on that. He might never speak but there has been huge investment in autism and so many resources available. I can use the internet to access photographs, or even take some on his iPad that he can have instant access to. Then there is picture exchange communication that one day he may be able to understand. There is also makaton and British sign language. He can take me by the hand to things he wants and we can help his socialisation skills by taking him to a wide variety of places and hopefully in time introducing basic social stories.

I know he will always have autism. But the likelihood is he will improve, even if not by a lot.

I know about his global developmental delay. We can work on his physical skills, one day eventually we may even be able to toilet train him, and in time he may be able to use cutlery, wash himself, dress himself and learn basic life skills. Children with global developmental delay, especially to the level of Isaac, may never catch up with their peers but he will improve, even if he always needs support.

But his neurofibromatosis type 1? Well that is just another thing altogether!

I am educated and willing to learn. I know about the physical features like his large head, his skins marks (cafe au lait marks because they look like coffee stains) and his small height. I know that some of his learning difficulties is also due to his NF1 and that genetically he inherited the gene from his father. I see glimpses of how his body may look as he ages by looking at my husband. We know he will most likely get freckles under his arm pits, his cafe au lait marks will increase and grow, and he will most likely have fibromas (small tumours on his skin). Those are all things we can cope with. And I am sure Isaac will cope with them too.

imageimage imageIt’s just the unknown. The fact that when you say to people he has tumours the first thing they say is ‘does he have cancer?’, followed by the inevitable, ‘why can’t they take them away?’. That’s the hard bit. No he doesn’t have cancer, for which we are incredibly thankful. But he also can’t be cured. And should he develop certain tumours on his spine, or eyes, for example, he may one day require chemotherapy. But unlike cancer, there will never be the option of no longer having tumours.

He will always have autism. He will most likely always have global delay (although that may change to learning difficulties as he ages) and he will always have neurofibromatosis type 1. But unlike the others his NF MAY be stable, mild and not require treatment or it may throw up hurdles we don’t want to even think about. Of course we hope and pray for the former and reassure ourselves this is how it has been for my husband.

Why can’t they take away his tumours? Sadly he would just produce more. And more. And more.

Do I want a cure for autism? Sometimes when I have tough days and my son is not able to be understood and is frustrated yes. When I spend longer watching lift doors with him than I do sleeping some weeks? Maybe. Would I like a cure for his global delay? Partly, but then he is slowly achieving things and I know in his own time he will get there. Would I like a cure for neurofibromatosis? Yes I would.

But then I look into these big brown eyes and I think I couldn’t possibly love this boy any more than I do. And I know whatever the future holds…well we’ll get through it…one lift at a time!
image