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.

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The day I first heard the word Neurofibromatosis

 

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Diary entry December 2012:
I have just moved house with my newly turned 4 year old twins this week. We are living out of boxes and working our way through a garage full of our belongings and now we need to take time out today for yet another hospital appointment.

I am tired, stressed and hoping to simply receive the results of my son’s most recent 24 hour EEG. I already know he has classic autism and delayed development and last month marked a year since he took his first steps. He has yet to speak. He has yet to be potty trained. I have been reading. I know autism and epilepsy can be linked and I am praying if this is the cause of my baby’s seizures we can get this sorted today.

We arrive at the hospital. We wait.

Then they call his name.

I carry my baby boy into that doctor’s room kicking and screaming. There are two doctors in the room and I feel uneasy that something seems’off’ just looking at the thick notes the specialist has in front of her about my son. This is my baby; my longed for child. I ought to see a pile that thick of photos of him eating and playing and having fun, not a pile of medical reports about him. My son won’t stop screaming.

So we wait.

The doctor starts with asking about any updates. Have we noticed any further seizures? How is his general health? She then gently and carefully explains how my son’s EEG has come back ‘abnormal’ and that there was a lot of seizure activity noted. I don’t understand the technical reasons behind it but I do hear her saying ‘not epilepsy’. I start getting the children prepared to go home.

But she just sat there.

Somwe wait.

‘Are you aware your son has an abnormally large head?’

Well, yes I was very aware of this, especially compared to his twin sister.
‘Have you noticed any birth marks on him at all?

Well, yes doctor, but I would not worry about them as his dad has them too.
‘Would it be ok to have a look at them?’

I look at my son happily sitting on the bed pulling at the blue roll covering it for hygiene reasons and playing with it between his fingers. He would happily strip naked so he is never going to object to having his clothes taken off.

I sit there watching on as two medical professionals look in detail at my son’s body.

There is a way medical people look at each other when something isn’t right: a knowing look, a silent ‘are you thinking what I am thinking’ look, a look that says ‘will you tell them or me?’ We had seen that look just six months prior at the autism diagnosis. I never want to see ‘that’ look again. I am scared. I am curious. I am confused.

We wait.

And I am even more confused now the doctor isnasking if she can see my husbands birth marks too. He is 55. He can drive, live independently, has a job and no medical issues. It was just some marks and spots on his skin. What is the deal here? She asks my husband a few questions and then sits back down at her seat. My son returns to tearing up the blue roll and his sister sits on my knee quietly.

And then she says it:

‘Your son is presenting with autism, learning difficulties, seizures, a large head and, most importantly for us, over 8 prominent cafe au lait marks on his skin. Given the family history (what family history I wonder?), we both strongly suspect your son has a condition called Neurofibromatosis type 1. You will be referred to genetics and I will arrange for a nurse to come and do a home visit as soon as possible. Like your sons’s autism this is lifelong and there is no cure. Your son has simply inherited this from his father. I will see you again in six months time. Thank you for coming.’

At that we leave.

So that is it. At least she wrote it down for me.

From that day on we have waited. We wait to see if his health remains stable. We wait to see if any more tumours grow. We wait to see if his sight is affected.

On 3rd December 2012 I found out my child had neurofibromatosis type 1. All I can do now is wait. It is unpredictable and no-one can say how my son might be affected. All we can do is wait.

 

When it happens to you…

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We all, in one way or another, feel a need to connect with others. The popularity of reality TV, soap operas, social media, autobiographies and personal stories show how we can be touched and interested in others. Even the nosy neighbour in your street is looking for a way to be connected with someone else. Millions connect with football teams, attend clubs and groups of many sorts, join organisations and long to be part of something. It seems it is human nature to not wish to be isolated. Being part of something else makes us feel less alone, gives us security and allows us to feel loved and supported. Everyone one of us needs that.

We are drawn to other people’s stories because so often in some way we can connect with them. Many of you reading this will have children with special needs, or be a parent, or know me personally, have a similar faith to me, have twins, or identify in some way with part of my story. The longer I blog, the more experiences I live through and the more my children grow, the more people will be able to connect. I appreciate every one of my followers, family and friends so much.

It is the same for me too. When I was struggling with infertility I received comfort from reading other people’s stories from people who had went through similar. When my children were diagnosed with autism I searched the internet for support groups and information and joined online and local support groups with similar families. When my son was diagnosed with neurofibromatosis type 1 I did the same again. We are drawn to like minded people. It takes away the unknown. When someone else has walked that path before you there is so much reasurrance to be had from hearing those four words “It will be ok”.

But in amongst that common ground is still the reality that every one of us is different. There is a part of everyone’s story that is unique because we are all individuals. So here is a recap on our story so far and a brief update on the latest goings on:

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My name is Miriam. I have been married for almost 16 years now. I have always wanted children so we started trying for a family right away. Nothing seemed to happen. So we just kept on working, living, and believing it would happen in God’s timing. Finally after 7 years of nothing I went to the doctor. I was diagnosed first with polycystic ovaries and referred to hospital to be put on a very long waiting list for IVF. Further tests at hospital changed the diagnosis from polycystic ovarian syndrome to a rare condition called late onset congenital adrenal hyperplasia. More hospial referrals and life long steroid medication followed but still no further forward in our quest for a family. As IVF was now no longer a definate we applied to adopt. We went through so many assessments and checks and finally we were assessed as suitable candidates for matching with a sibling group. We had a big enough house, we worked, I had a degree in teaching and everything was finally looking like we were heading in the right direction after 9 years.

Then came a letter in the post that we had finally came to the top of the IVF waiting list! We had been told we had been taken off the list for medical reasons but now we had a very real dilemma. Doctors gave us less than 1% chance of success with IVF due to the medcial complications I had and our long history of infertility. But during those years our faith was growing. And we knew this was something we had to at least try.

So finally in January 2008 I started a form of IVF called ICSI. A huge amount of hospital visits, scans, blood tests, more blood tests, and injections I had to give mysellf daily at home. We were facing the unknown and had to keep out faith. On Mother’s day 2008 I injected myself with my final lot of fertility drugs. I had a reaction to the anaesthetic used to put me to sleep for the operation to remove my eggs so I was kept in hospital overnight. I returned again a few days later to have 2 embryos implanted from the 15 eggs I had removed. 10 days later I was admitted to hospital again as an emergency due to hyper stimulation syndrome and I remained in hospital quite ill for a week. It was during that stay that blood tests revealed I was indeed finally pregnant.

After I was home the pregnancy went well. I suffered from the usual sickness but the excitement of being pregnant made this more than bearable. At 7 weeks pregnant we had an early scan which revealed two healthy babies! In November 2008 my twins Isaac and Naomi were born healthy. Due to my medical history I had a c-section but within 3 days I was home.

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The first year of having the twins was a whirlwind of feeding, changing, sleepless nights, crying, visits from the health visitor and lots of weighing of babies. I was breast feeding but Naomi wasn’t putting on weight while her brother was eating like milk was going out of fashion (5 years later not much has changed there!). The children were late to meet thier milestones and Naomi was very small but no-one seemed too concerned. It was noted Isaac had an eye squint and he wasn’t playing much But I was willing to be comforted by the words everyone seemed to say, ‘It will come, don’t worry.’

But by 18 months I was worried: Naomi wasn’t crawling, or pulling herself to stand and Isaac was crawing into doors and walls like he could not see them and showed no progress towards walking at all. This was my first rung onto the ladder of special needs parenting and it was so scary and unknown. How do you find support groups when you have no idea what is wrong? What do you type into google when you are not even sure if it is just your imagination?

At 22 months old the twins saw the community paediatrician for the first time. We now know this lady on first named terms! That day I heard the word “autism” for the very first time. I will never, ever forget that day. My world was turned upside down over night. This started the barage of home visits from professionals, the self doubt as a parent and feelings of guilt that you have done something wrong, the vulnerability of having all you do with your child open to criticism from every professionals you ever meet. That feeling of desperation.
It took almost 2 years later before Isaac was finally diagnosed formally with classic autism, global developmental delay, severe learning difficulties and pica. Finally I had plenty to google! He attended specialist nursery provision and is now in a school for children with severe and complex needs. He then started having seizures. He had several EEG’s and in December 2012 we were told he has neurofibromatosis type 1, a tumour condition that means he has brain tumours. A few months later we found out he is visually impaired too and only has the sight in one eye.

Isaac started walking at age 3. Naomi required a standing frame to help her and finally she took her first steps at 2 and a half. I never knew if it was my imagination at first, but I started to see more and more signs of autism in Naomi too. In October 2013 she was assessed and diagnosed as also having autism spectrum disorder.

One of the many people we have seem in our journey of special needs has been genetics. When asked if there were any other conditions or diseases in my family I mentioned over a year ago that there was a rare syndrome within my family. The gene for this has now been discovered (isn’t it so amazing how research can do amazing things like that) and I was recently tested. I have just recently been conformed as having Aarskog syndrome and both children have a 50% chance of having this too. So one again we face more blood tests and yet more waiting.

But in all this we still believe. My faith was, and still is, an integral part of who I am. A few months ago I made my story into a film. Sometimes it helps to see it in words and pictures and song.

What do I want people to feel when they watch this or read my story? I pray you hear a message of “Keep believing. Keep on going. And keep the faith.”
It is so much more real when it happens to you.
Thank you for following me. This is a live journey of the good, the challenging, the real life of living with special needs children and faith. It is so good to have others journeying with me…