The ‘scaniexty’ I live with when my child has NF1


He was four years, three weeks and five days old when I left the hospital with a piece of paper with the words ‘neurofibromatosis type 1’ scribbled on from a doctor I had only just met.

 
The more I googled the more upset I got.

 
Would you not be anxious if your baby was diagnosed with an incurable progressive genetic condition? 

 
IMG_1043Back then my biggest worry was seizures. The cafe-au-lait marks on his little body had meant nothing at all until that day but now I read that their presence was a key marker for diagnosis. Another one we could tick was developmental delay, another large head, and still another freckles under his arms. It meant the doctor was right and as I read on about complications and tests my mind began to panic. The condition causes benign tumours to grow anywhere on the nerves of the body causing a large variety of difficulties including scoliosis, vision impairment, bone deformities, epilepsy, learning difficulties and facial deformity. 

 
As the tumours can only be seen properly by MRI my first thought was should my little brown haired boy have to have anaesthetic to have a brain and body scan?

 
This was my first taste of the form of anxiety that is common with parents whose children have NF1: SCANIETY, a form of anxiety that is associated with having scans and waiting for results. You won’t find that word in a dictionary but parents of children with NF1 understand it and struggle with it so much.

 
You may never have heard of it but we live with it none the less. 

 
Before our child ever has their first scan we still suffer with it. The ‘what-if’s’ of thinking should he/she have an MRI and if so how do we convince doctors to give them one? In some areas it is standard procedure to scan a child soon after diagnosis to have a ‘base line’ to work from but for so many others this expensive test is only given when there is a clinical need. Parental anxiety is not always recognised as a clinical need so many families find themselves fighting for a scan to find out if their child has any internal tumours and if so where.

 
My son was 7 years, six months, one week and two days old when he finally had his first MRI. From the moment I received the appointment I was anxious. It was going to be the first of many times he would require anaesthetic. How would he cope? How would I arrange care for his sibling? Would be need to stay overnight? What might they find? When will we get the results?

 

Scaniexty is scary.

 

My whole life was suddenly out of control and everything rested on the results of this scan.

 
Two weeks and five days later I had a phone call from the doctor. Could we come to the hospital the following day as a matter of urgency to discuss the results.

 
Scaniexty hit again with a vengeance. They had found something. 

 
They discovered a number of things from that first scan. My son had a serious eye condition unrelated to his NF1 which meant he had no sight in one eye. On the other eye he had something called an optic glioma which so many NF parents dread: a tumour on his optic nerve. A group of oncologists discussed my child’s case and decided, for now, no treatment was needed. We were sent home.

 
Scanxiety never left me though.

 
In six months time we would be back for another scan. My mind could not ignore that. He had a scan, they found a tumour, next time there could be more.

 
What should have been a six month wait until the next one turned into an agonising ten months before we finally had our next scan on 3rd March this year. The scaniexty of waiting for that second scan was awful. The day of the scan was awful. Waiting on the results is awful.

 
When your child has NF1 scaniexty never leaves you. 

 
This time the results showed the original tumour was stable but he also has brain lesions, one of which is large, and these are a direct result of his NF1 too.

 
We live with the constant worry he may one day need chemotherapy. We live with the worry he could go blind due to his optic glioma since he has no sight in his other eye at all. We live with the worry they may one day they could find a tumour that keeps growing.

 
I live with anxiety as a mum to a child with NF1. That anxiety is deeply connected to the fact my son needs ongoing scans for the rest of his life.

 
There is no cure for NF1 and there is no cure for the scaniexty it brings either.

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There is nothing ‘high’ or ‘functioning’ about her autism at all.

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My daughter attends her local mainstream school. Her grades are average and her behaviour perfect. She is mostly happy to go to school and is never later with her homework. She appears to be an ideal student and school report ‘all is well’.

But all is far from well with my child!

She no longer receives occupation therapy, or speech therapy or any other support in school. Her grades are considered a reflection of the fact she is coping well and therefore her autism is deemed to be ‘high functioning’ simply by the fact she can answer simple times tables questions or write a story.

But there is nothing either ‘high’ or ‘functioning’ about her autism in any way!

The dictionary defines high as “great, or greater than normal, in quantity, size, or intensity.”
My daughter has high ANXIETY, high EMOTIONS, high SENSITIVITY but not high autism!

She struggles with noise, touch, change, lights, attention, demands placed on her, eating, drinking, toileting, self care, socialising and understanding the world. Just because she can read a book, sit quietly in a classroom and sing in assembly does not make her autism any less.

The dictionary defines ‘function’ as “the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.” Is it ‘proper activity’ for a person to break down in tears and make herself sick because the school has changed her gym day for a few weeks? Is it ‘proper activity’ for a child to be unable to interact at all with other children in the school playground? Is it ‘proper activity’ for a child to stop eating and drinking completely due to anxiety?

Her autism does not disappear when she is at school. All that happens is she conforms. She ‘follows along’ like a sheep in the hope that no-one notices. Inside she is breaking up, welling up and churning up but all anyone sees is a child who can write in a jotter, sit on a seat and tidy up when asked.

A child with autism in mainstream school should never be assumed to have ‘high functioning’ autism simply by the fact they are in a ‘normal’ school classroom. Just because they have the same uniform on as all the others does not mean they are the same.

Inside they are either feeling sick, shaking with anxiety or screaming. The flickering light is causing them pain, the humming of the radiators is making them want to cry and the child next to them leaning on their desk or touching their pencil case is causing them to want to run away. Can you see any of that or do you just see a child with a pencil in their hand writing?

School don’t see the pain in her eyes when I pick her up at three o’clock. They don’t see the teeth grinding, the skin picking and the disengagement. They don’t see the lining up of everything, the screaming and the cowering in a corner. They are not dealing with the sleepless nights begging me to come in bed beside her or the full on food refusal because her anxiety is making her ill.

They look at test scores, conformity, and academic skills and decide that my child at best has ‘high functioning autism’ or at worse is ‘fine.’

She is neither.

She has autism. Simple as that. She is every bit as autistic as her non verbal brother who has severe learning difficulties and attends a special needs school.

Don’t dismiss her struggles based solely on the school she attends.

School can say what they like but there is nothing ‘high’ or ‘functioning’ about her autism at all.

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50 Reasons Why We Still Need Autism Awareness Month

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You are probably thinking this is going to be a heck of a long blog with a title like that. What use would that be? I have no intention of boring you so I will cut to the chase.

If you have ever wanted to know why we still need autism awareness days or months or awareness days for any other type of condition here is why…

These 50 comments are all from the general public and each and everyone of them were actually said to a family with a child with autism or additional needs.

This is why I keep writing about autism. This is why we need people to talk about it.

1. Now your child has glasses it will cure his autism.
2. The best way to stop your child from smearing is to change him more often.
3. Your child’s difficulties are because you worked while you were pregnant.
4. Your children have autism because you don’t love them enough.
5. They probably have autism because they are twins. Twins always have problems you know.
6. It is because you had post natal depression. You are to blame for your child being disabled.
7. Your child is like that because you are not strict enough with them. They would never be like that if they were mine!
8. Are you sure they have autism? They don’t look autistic to me!
9. Vegetables, your child needs to eat more greens and then they will be fine.
10. It is because you breast fed them for far too long!
11. Your child needs to control themselves better.
12. Are you sure it isn’t you with the problem? Have you thought about counselling?
13. You must have really done something terrible is a past life to have a child who is blind.
14. Have you tried praying more?
15. She is non verbal because you don’t speak to her often enough.
16. He is just lazy.
17. They never had anything like that in my day you know.
18. He’ll grow out of it.
19. Have you not thought to use essential oils?
20. They just need a good smack.
21. Once he starts talking you will never know he has autism.
22. Disability is just a excuse for poor parenting.
23. Your child has that because you neglected them.
24. It is learned behaviour because their brother has it. They are just copying you know.
25. He just has too much screen time. Take his iPad away and he will be fine!
26. All kids do that.
27. It’s just because you have anxiety. That makes a child disabled.
28. She isn’t talking because you are deaf so you can’t teach her!
30. He’s fine in school you know!
31. Fillings. If you have fillings in your teeth it makes your child disabled.
32. Peppy Pig is what makes your child autistic.
33. You need to feed them the right stuff. Organic, gluten free, sugar free, wheat free…
34. It was probably for the best you had a miscarriage as you would not want another child like your son would you?
35. Cool they have autism! What’s their special gift?
36. He’s always fine with me you know!
37. It’s because you and your husband separated.
38. There’s no chance he has autism because he gives good eye contact.
39. There’s no chance you have autism…you have a job!
40. Are you sure they actually got diagnosed with that?
41. You just sent her to the wrong nursery!
42. Vaccines. I got my child immunised and made them disabled.
43. They just need more fresh air.
44. Dirt. My house is too clean and that has caused my son’s autism!
45. Have another child. If he has someone to play with he will be fine.
46. She can’t have autism, she’s a girl!
47. She is way too social to have autism you know!
48. You do way too much for him. Doing that makes them disabled.
49. You just want people to feel sorry for you because you have a disabled child.
50. Mixed race marriages. It isn’t right and that is why your child has problems!

Are you shocked? Angry? Upset?

So was I.

Ignorance is still rife and until people realise how wrong and hurtful comments like this are I will continue to write about the reality of my life.

You may have heard about autism but do you really know what it is?

It is alright to not know but it isn’t ok to say any of the things above.

I just hope and pray that every awareness day, every awareness month and every blog I write goes some way to dispelling some of these awful comments.

Until then I will talk about autism in all its reality, splendour and wonder.

Because I never want these two to ever have to hear any of those 50 comments, ever!IMG_0725