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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Being mum to an anxious child

What is it like being mum to a child with severe anxiety?

It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.

It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.

It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.

It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.

It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.

It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.

It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.

It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.

That was just the first hour of our day.

My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.

Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.

I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.

Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.

Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?

I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.

Her anxiety is huge. Her worries are real.

Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.

I acknowledge her anxieties but I also help her overcome them.

That is the role of a mum to a child with severe anxiety.

That is what it is like being mum to an anxious child.

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The day my five year old changed her class without saying a word

imageLike every mum I was terrified when my baby started full time school. Even as I dressed her in her shirt and tie I wondered yet again if mainstream was going to be the right place for her.

I had more reason than most to worry as she left that day still unable to dress herself and not yet potty trained, diagnosed with autism and selective mutism, and despite having had an extra year at nursery already, she was still one of the smallest children.

On top of all that she carries a heavy burden wherever she goes even at the tender age of five.

I often wonder if professionals realise the daily weight that siblings carry on their shoulders every day?

As well as her own diagnosis my beautiful blue eyed girl is the twin sister of a boy with even more complex needs. He has tumours, severe autism, challenging behaviour, global delay and is non verbal. She has to live with that at the fragile age of five.

How would she manage without him as his school placement was 14 miles away from hers? How would anyone know to meet her personal needs if she was unable to talk? Would her anxiety, vulnerability and tiny size make her an easy target for bullies? Would her home life stress cause issues with her learning?

I worried. And wondered.

But something changed that first week she started school. And one day her classroom assistant told me that my special, fragile, silent girl had actually changed that whole class of new starts without even saying a word.

It turns out there were two other children in her class who were also silent, but for a very different reason: they were unable to speak English. For ease of teaching my daughter was sat next to these children so the one assistant could help them all. But none of the teachers spoke Russian and everyone was still trying to work out the best way to help this group of children who due to inclusion had all been placed in the same mainstream class.

The teacher taught a lesson and the children sat on the floor. My baby girl sat and listened intently and returned to her seat. The class had been asked to draw a picture and write their names at the top of the sheet. As all the eager children started to pick up pencils and pens Naomi just sat there. She watched as the classroom assistant struggled to help the two others who had no understanding of what had been asked of them.

As another child momentarily distracted the assistant Naomi got up from her seat and walked over to the two children. She took the water holder from the middle of the desk and pulled it beside them. And silently she took each child by the hand and pointed to their own name and then pointed to the top of their paper. She then picked up a crayon and began to mark their paper every so slightly and pointed to what the others were doing.

She waited while they took in her attempts to communicate without language and slowly they began to copy down their name and begin drawing. She looked at them and smiled. And only then did she return to her own chair to try and write her own name.

The classroom assistant cried. The teacher watched.

The most unlikely child in the class had taught them all a lesson that day. The child diagnosed with a communication disorder actually showed them all how to communicate.

She still does not know one word of Russian. But living with a non verbal brother with complex needs taught her something that changed her entire class of children without her saying a word: it doesn’t need words to help people.

I still worry. But I know that in all she lives with she is somehow managing to turn ashes to beauty. And I could not be more proud of her.

This article was originally published on firefly and can be seen here: http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-without-saying-a-word

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This is my ‘normal’

This is my ‘normal’

The intense sadness is beginning to ease now. Waves of heaviness still creep up on me at times but I cry, wipes my tears away and face another day with a smile.
Maybe I am getting to that point of acceptance?
Maybe I am realising it isn’t the end of the world and I still have two beautiful, amazing children?
Or maybe it has all just become ‘normal’?

I looked back on some old videos and photos this week. There were happy moments of my children playing, flapping moments at lifts, lovely memories of my daughter singing, and too many photos of my children eating! Reminders of how things were and a stark reminder that in many ways things are just the same.image

My son still has his chubby cheeks, big brown eyes and cheeky smile. My daughter has stunning golden hair, piercing blue eyes and beautiful petite features.
And my son is still not speaking…

This is my ‘normal’.

Since my children were months old I have been trailing them regularly to hospitals and clinics. We have so many professionals involved they have to add extra chairs at every meeting. If we decide to change something, if my children have medical issues arise or don’t eat their dinner for a couple of nights I feel I have to call everyone to keep them up-to-date. I have phone calls from schools, people dealing with our children, and others who have just received referrals about them on an everyday basis. We have to take our mobiles everywhere and be available to pick our children up at short notice at any time. Every week I have to discuss with transport about times my child will not be at school due to appointments.

This is my ‘normal’.

I have visuals in every room of my house, we have regimented routines, I read the same bedtime story every single night. I make the same dinners, in the same way, at the same time every week. I buy my children the exact same shoes in the next size hoping they won’t notice I have changed them as their feet grow. We visit the same places we have been to before. I use google street map to show places before we go there and I have become an expert at knowing where every single lift is in every shopping centre within travelling distance of my house. I spend hours watching hand dryers with my son because it keeps him happy.

This is my ‘normal’.image

I can’t tell you if, or when, my son may speak. I can not tell you if, or when, my daughter may overcome her severe anxiety or be able to speak in school. I can not say if, or when, my son will ever stop wearing nappies. I do know my son is unlikely to ever attend mainstream school in any capacity. I have no idea if he will ever learn to read or write. I have no idea if his tumours will grow anywhere else in his body or if his seizures will remain stable.
I live with uncertainty. But I also live with intense gratitude.

This is my ‘normal’.

I am thankful for everything. I celebrate the mundane. I kiss and hug my children in private and in public without caring what anyone thinks. I smile because I have a thousand reasons and more to cause me to. I laugh with my children. I treasure life and find enjoyment in everyday moments. I take pictures of my children like tomorrow is not guaranteed. I love with all my heart because my children have taught me too.

This is my ‘normal’. And normal is good.

Let silent words be heard

My children live in a different world to me. They have autism. I don’t. They order the world, understand language and process sensory feedback in an entirely different way to me.But because they were diagnosed at just 3 years and nine months and 4 years and 10 months old they were unable to tell me much about their world. So I took it upon myself to learn about theirs.

I bought so many books about autism. And read them all. Around 99% of them were written by people like me who do not have autism but who felt they understood what my children may be experiencing. I went to training courses about autism. They were all run by people without autism too, trying to explain something they have never lived with. But I did find out something very early on: no two people with autism are the same. I already had that figured out with two very different children both with the same diagnosis!

I wanted to know what it was like for my own two children. I wanted to know how best to help them and teach them. I wanted to be part of their world.

So I watched them. I sat with them. I held them. I listened to them even when it seemed like to everyone else there was nothing to hear. And everyday I prayed that one day they would open up to me.

This week my six-year-old explained to me a little about why she never spoke a word in nursery for the two and a half years she attended. Speech and Language therapists diagnosed selective mutism. I had no idea why my daughter was speaking so fluently at home but not at all outside of the house.

It was relaxed, accidental, and natural. As I read a bed time story to her and read a line that said ”Hi Tony!’, called Topsy, but her voice came out not quite loud enough’ (Topsy and Tim start school by Jean and Gareth Adamson). Naomi suddenly opened up. She knew how Topsy felt. She went on to share how that happens to her all the time: She wants to talk but the words just won’t come out of her mouth, how it was like the words just stuck in her throat, and sometimes her mouth could not even open up. She was scared and worried that she would get a row. She was shaking because things were new and different and she seemed so small. Her voice was scared of new people and liked to hide and sometimes she was sure she was talking because she could hear herself but now she realises it was just her brain and not really her mouth. She was worried that once her voice did come out she may not be able to control it and it might never stop. It was like someone jumped into her mouth sometimes and just stole away all the words she was trying to say.

Here I was suddenly getting a glimpse into her world. We had read this story so many times yet tonight she suddenly realised she could identify with one of the characters. And more than any book, or course, or professional input, I got to learn so much more about my daughter, her anxiety, her selective mutism and her autism.

Naomi’s twin brother is totally non verbal. I may never ever get the privilege of a night like this with him. I may never know why he bites himself, insists on mashed potato and gravy at every meal, only ever wants to wear a red school jumper or what keeps him awake all night. So I will have to learn to listen to him some other way.

Last week there was a social media campaign to support and bring awareness of non verbal children, especially those with autism. You could say that for a long time that applied to both my children, but for very different reasons. When Naomi heard about it she was desperate to be part of it. For her brother. But also for all those other children who like her have struggled to communicate with selective mutism.

I struggled to write this week. Writers block? Maybe. Or maybe I just needed to be quiet for a while and let those silent words be heard.

My children live in a different world to me. Both of them want to tell me what it is like. Only one of them can now explain that with words. The other is silent.

But let us listen. Let us put our fingers over our mouths to keep them from speaking. And let those who are struggling have a change to tell us in whatever way they can. Let us hear from our own children. Let us hear from those who struggle:

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Does her anxiety look big in this?

image Last year, a week before her fifth birthday, my beautiful daughter was diagnosed with autism spectrum disorder. She understands the world very differently. She struggles with changes to routines, has sensory issues, has balance and co-ordination issues, loves repetition, and struggles a lot in social situation, but more than any of these she mostly struggles with severe anxiety. She is anxious every minute of the day, and even through the night.

But unlike physical difficulties which can be plain to see, anxiety is a silent, hidden disability.

Can you tell from her photo she struggles so much with anxiety?

It is well-known adults can have mental health issues. Most people will know someone who seems that bit more ‘stressed’ or anxious about things than others, or who seems very low in mood. There are even medications, both prescribed and off the shelf, for adults who struggle with anxiety, sleep disorders and depression. But what about a young child whose anxiety is just as crippling, whose fears are just as genuine, and who struggles daily with stress?

For so many children with autism this is daily life. The ‘traits’ of autism manifest even more when anxiety is increased. With my daughter that means she clings to me even more, struggles even more with sleep and lines up her toys even more than normal. She withdraws into herself more and her eating becomes even more restricted. She is snappy, uninterested in life and always exhausted. Just like if an adult had no appetite, stopped sleeping, withdrew and had a low mood a doctor, or loved one, would notice something was wrong. Thousands, if not millions, of parents are watching their children struggle with the same thing and there seems to be so little help available.

We are fortunate to already have a diagnosis. We already have a team of professionals involved. Yet when my precious baby girl became so anxious at the transition of starting school she began having severe panic attacks and nose bleeds no-one seemed to know how to help her. Advice was so conflicting from keeping her off school to insisting she went to learn to face her fears. Those who observed her in the school environment reported back that her anxiety was so obvious that she spends all day chewing her tongue. She may be in a mainstream school but I know in my heart it would not matter where she was educated she would still be on constant high anxiety.

So while others have left their infants by the gate from the second day of starting school and went home crying in pride, I had to wait fifteen weeks later before my little one felt ready to take that step alone. Until then I had to hold her hand right up until the moment the school bell rang and she was lined up with all the other children.

Now she is panicking about all the changes involved in the run up to Christmas. Will I remember to come to the play, will she know what to do when her anxiety overcomes her seeing so many people watching the nativity, why are they going to a pantomime instead of doing reading and number work in school, what if a child is off and she wants to give them a Christmas card, why are they having a party, will she have to go see Santa….and so on. Real worries, real fears and causing very real stress to a just turned six-year-old.

I can reassure her. I can prepare her. But I need to balance that by not feeding her fears and allowing them to become even stronger.

She can tell me some of her worries. Many other children with autism can’t.

In two weeks time we have our first meeting with the children’s mental health team. We only got referred because ENT have completed all their tests and concluded her severe nose bleeds have no medical basis and they believe they are directly related to her anxiety. Then her panic attacks were so severe she was struggling to breathe some days. That was back in August and we are only just getting seen in December.

There are days when I hear her laugh and play and read her books to me and I wonder if this can be the same child who becomes distraught if I leave the room to use the bathroom. But you don’t always have to be sad to be stressed. You don’t always have to be house bound to be anxious. And you don’t have to be an adult to struggle with mental health.

We need to recognise that so many children with autism are struggling with anxiety. And we need to have help to support them.

That starts by realising that even when we don’t see it, anxiety is still there: the silent, hidden disability.

Can you see it? Does her anxiety look big in these pictures?

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