What it is like to parent a child who can never be left alone

When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.

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Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to the bathroom is such a huge risk I leave the door wide open so I can see him and hear him, or I take him with me. Simple tasks like tidying the kitchen can only be done if I am able to see him completely or he is in the same room as me. If I leave the house for any reason I have no choice but to take him with me. I can only shower or bath when he is at school unless there is another adult here to watch his every move. Even popping to the car in my own driveway is a risk I can not take most days.
I do not want to live like this but I have no choice. I am fully aware how damaging this level of hyper-vigilance is to my son and to myself but I am actually doing it because there really is no other way. School have to show the same level of vigilance as do his respite centre so it isn’t just me.

He simply can not be left alone, ever.

Here are a few reasons why:

1. He has no language.

That poses huge risks. He can not ask for help, or shout if in danger. He can not ask to reach something that could fall on top of him and he can not tell us where he wants to go. So I have to be with him.

2. He has no concept of danger. 

He would open the house door and stand right in the middle of a motorway and have no idea. He would eat grass or dog faeces or climb out a window. He would play with knives or drink bleach. I can not leave him for his own safety.

3. He sensory seeks all the time.

He seeks out water but can not swim. He seeks out lights…even if these are car headlights. He loves the noise of smashed glass…he climbs…he swings on doors…he bites and kicks…for his own safety and the safety of others he MUST be supervised.

4. He is violent.IMG_0449

One minute he can be the most loving, gently child but that can change in a moment and he can attack someone. While I know some of his ‘triggers’ for the safety of his sister he can not be left in a room alone with her or anyone else.

5. He smears.

As awful as this is to talk about it is real for so many families. Left alone for less than a minute and so much damage is done. No-one benefits from the clear up and the less it happens the better for everyone.

6. He eats everything.

Bedding is a current favourite but we have had clothing, toys, jigsaws, paper, pencils, lego, teddies and money all eaten regularly. The danger of that is very obvious and unless we wish to have a season ticket to the local hospital he MUST be watched.

7. He destroys.

He is the master of opportunity. Sensory seeking, no concept of danger, little awareness of cause and reaction and no understanding of empathy mean he has fed his sisters tropical fish milk, talcum powder, full tubs of fish food and several Thomas tank engine trains. He has thrown and broken expensive technology like iPads and cameras, he has blocked the toilet with all sorts and poured all manner of things into the bath tub. While he may have no understanding of his actions we do and it is vital this behaviour is prevented as much as possible. The only way to ensure that happens is to be always vigilant.

8. He has seizures.

Medically the consequences of leaving him unattended could be fatal. He has had seizures at the top of flights of stairs, outside and during the night. He could choke on his own vomit, badly injure himself or knock himself out. He must be watched.

9. He is vulnerable.

While he may be living in his own ‘bubble’ sadly he is at high risk for bullying and abuse or wandering off. As his mother I have to protect him. That means having to be with him. It is hard to trust when he has no communication to tell me anything.
People tell me I need to relax and that he needs to learn independence. What they don’t understand is that he never will be independent. The level of care he has now is what is likely to have to be in place throughout his adult life. It really is the only way to keep him safe and to keep others safe too.

I am tired. I cry. My life is severely restricted by the needs of another person. If I want my son to stay alive and have any quality of life I have no choice but to never leave him alone.
What’s it like to parent a child who can never be left alone? 
Lonely.

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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…

 

Isaac’s journey

I was so ill in hospital the day I was told I was pregnant. Seriosly ill with ovarian hyperstimulation syndrome, hooked up to a drip with a catherter and unable to do much without a lot of pain. But nothing could surpress my delight at finding out I was finally pregnant. The elation and excitement at the news spurred me on to recover and 5 days later I was home and able to enjoy the rest of my pregnancy. 2 weeks and two days after getting home I was back at hospital for an early scan and this was what we saw:
7 week scan
TWINS!
The frst 16 weeks I vomitted so much I lost a stone in weight, despite having two growing babies inside me. But things settled and I continued to work whilst having regular scans and check ups. I actually thought I was busy back then, working full time, keeping house and buying all the beautiful things that babies require. Ha! Try doing those things whilst actually having to look after two children and then you realy know what busy is!
Then on 7th Nov 2008 my world changed as Isaac Gabriel Joshua Gwynne entered the world weighing 6lb, 4 oz followed a minute later by Naomi Miracle Grace Gwynne weighing a petite 4lb 11oz. Beautiful and both so perfect.
9 months pregnant Before.
new family 24 Hours later.

And so the baby years, toddler years and pre-school years began. And this week those wonderful, exhausting, precious years come to an end as my baby boy begins full time education. I get to keep his twin sister at home another year and this time next year I will write a similar post marveling at all that she has achieved and enjoyed in those amazing years before school starts. But this one is in honour of my baby boy as he begins his adventure in full time education. So journey with me through the last 4 years and nine months and see how that tiny baby has grown to become a young boy full of character and energy and how he has faced so many challenges along the way. As I journeyed with this boy my life changed so dramatically that I will honestly never look at anyone the same ever again. He is being seperated from not only his mum and dad but his precious twin sister. But they will always be as close as this:
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looking
and this.

Isaac was a great eater and such a content baby. But a sicky baby too. He brought up a lot of milk but never cried. Eye contact was an issue even as a tiny baby but did improve a little as he approached his first birthday. Isaac was struggling to keep up with other babies and meet his milestones but I was told it was common with multiple births and not to worry. He was gaining weight and was progressing slowly. Here he is at 6 and a half months with his sister by his side helping to support him:
6 months
By 11 months he was catching up and now crawling and by a year he was sitting up unaided. Within a few months he mastered the art of pulling himself to stand:
1st birthday
pulling up
But then we hit a developmental block. We had no speech, only a few sounds and it was getting more obvious he had a significant eye squint. By 18 months referrals started to get made to a developmental peadiatrician. And everything changed. By the time he saw the paediatrician at 22 months we were still no further forward. He didn’t respond to his name, he had no words, eye contact was very poor and he was entrenched in his own world. Dependent heavily on routine and still not walking. Our house had just been repossessed and our world was turning uside down. We had moved miles away from friends, my mum was about to emigrate and then we heard that word for the first time: autism.
We felt lost. He looked lost.
lost
But things started to happen so quickly. Meetings, more meetings, people coming to the house to see the children, courses, professions I had only ever heard of at university suddenly start getting involved. I suddenly needed a diary, a filing system for paperwork and a crash course in a disability that seemed alien to the delights and cuddles my toddler was giving me daily.
He started nursery. Only a few hours at first. Then a few days. He was fast approaching 3 but still in the baby room at nursery. And still not walking or talking yet. And getting further behind by the day. It was all so scary. I had to trust God so much more, lean on my husband more and keep going when my heart was breaking. We applied for disability money and recieved word back in just 4 weeks. I didn’t want to read the reports that helped them make such a quick decision. I wasn’t ready.
He started scanning objects across his eyeline:
scanning
He cried so much:
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He refused to wear socks and showed no interest in toys. His only interest was food and sensory play:
space blanket
He started a specialist nursery and enjoyed going for a few hours 5 days a week. But progress was still incredibly slow. Just weeks before starting the specialist placement he took his first steps. But he was still very shaky and unbalanced and a few months later we recieved a mobility buggy. He was sent for more checks after having seizures. In July 2012 he was formally diagnosed as having classic autism, global developmental delay, severe learning difficulties and pica. Before we even had chance to digest this he was called a few months later for a 24 hour EEG to find out more about his seizures:
eeg
In the Decemeber of that same year we found out he has neurofibromatosis type 1. He has tumours on his brain causing his seizures. Tumours that could grow anywhere and at any time on any nerves in his body. But God has his hand on this boy and his story is touching so many people.
That month we moved house again and sadly he had to cope with yet another change of nursery. But this time he got to go with his twin sister even if they didn’t get to play in the same rooms. He had mastered the walking by now but still no speech and still behind in so many ways. Still in nappies. But growing, smiling, laughing and loving life.
As the nursery bus would pull up outside the house he would flap, almost fall out of the front steps in his hurry to get there and grab his beloved toy or book from us as he went. Never once a wave, not even a look at us..but happy in his own routine, doing what he loves.
But now he has finished and a new adventure awaits. Yesterday was the last time my babies got on that nursery bus together. He had no idea why I wanted to take his picture but I had to:
nursery bus
This was his last journey to nursery. The end of his pre-school years. The end of his stay-at-home-with-mum years.
This Wednesday he starts a new journey. A new season. He has came so far, been through so much, and even though he does not understand it, he hasn’t done any of that journey alone. I have went with him, dad has went with him and his twin sister has been to every appointment, been at every home visit and held his hand every day.
Now he has to journey alone…except he will never be alone as God is going with him. And so will mummy’s prayers.
Isaac’s journey just got more exciting…
please keep journeying with him as he starts his school for the first time this coming week.