Am I Wrong???

Am I wrong? Am I crazy?
Apparently I am over anxious… a nervous, neurotic mum.
Yesterday I sat and listened once again to a room full of people discussing what they feel is best for my warrior.
There were three of us present who know our warrior inside out, there were one or two people who know our warrior well enough to speak up for her… the rest were people who have seen our warrior once or twice and read about her on bits of paper.
The facts speak for themselves….
For four years I have been asking for support for my daughter’s seizure triggers…. for seven years I have been asking for better monitoring of my daughter’s epilepsy…. for two years I have been asking for her medication to be reviewed…
Since social services were involved over my refusal to agree to any medical procedure that would harm my daughter, all of the so far useless agencies have been made to do their jobs properly.
And the results of that is that our warrior has gone from needing rescue meds 3/4 times a week to only needing them once every three weeks.
Her seizures have reduced from 20+ a day to 5 a day.
She is happier, brighter and we are ecstatic!
So, everyone should be celebrating, right? Everyone should be looking at what’s working and pulling together to make sure this continues, right?
Wrong.
Everyone who loves our miracle and cares about her is thrilled.
Her beloved ta’s at school who worked so hard to get this result have been banned from talking to me… at the meetings these people who in my mind are worth more than the god-complex consultants are pulled to pieces, their invaluable knowledge of my daughter is dismissed.
My daughter’s siblings, one who is medically trained and was a young carer is ignored.
I am patronised and accused of being anxious and overly worried about nothing.
My daughter’s respite care was removed, her carer (my mum) is not listened to.
The people that DON’T know my daughter are being given the floor.
These arrogant, misinformed people have decided that my daughter is best placed in a facility, alien to her, away from everything and everyone she knows for a minimum of three weeks.
They can’t after four months of asking, give us an explanation of what they will be doing, why they will be doing it or what they expect to get from it.
They have said that they want a complete assessment of her seizures, behaviour, triggers etc…
We’ve pointed out that to take a child with complex issues, who is reliant on routine, familiarity and who is reactive to environment and put her somewhere utterly different with so much change will trigger seizures and meltdowns.. Will distress her and has a high risk of a status seizure resulting in coma and possibly worse.
They agree this is a risk. But, they say it’s worth the risk, even though right now she’s doing well.
Even if we could support her enough to prevent a status seizure, how do they expect to get an understanding of how she responds to her world, when they’ve taken her out of her world?
What knowledge can they gain from this? Why is the knowledge we’ve provided dismissed and rejected?
Unless they’re not interested in our warrior as an individual but more interested in what paper they could produce with results from any experiments, I mean assessments they were able to do…. (hmmmm)
It’s a circus.
Am I wrong to refuse? Am I wrong to ask that her best interests be the most important thing? Am I wrong to ask that we find a way to get results without putting her at risk?
I’ve soul searched on this… I’ve looked at it from every angle…
I’m not wrong. I’m not crazy.
Our warrior deserves to be heard… and if they won’t hear her roar, mama’s going to roar for her.

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Pets vs Children……

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‘Your mum chooses her cats over you’ve
What kind of a person says that to a child? Luckily my child knows he is loved, knows this is a ludicrous comment, knows this was just a vindictive, unprofessional, childish comment made by a bitter adult who should know better.

Yes, I do have pets. Yes, I love my pets with all my heart, but, I love them in a different way to my children.
I love my children with every fibre of my being.
They are my heartbeats, my life.
I would NEVER put my children at risk and if for one moment I thought that having a pet free house could improve or cure my children of their health problems, I would resolve myself to live an animal free existence.
But, our pets are not the problem.
In fact, our pets benefit us, benefit our health, both body and minds.
Our pets enrich our lives, we adore them and they adore us.
It’s well documented that stroking, cuddling and sitting with a pet calms, releases serotonin and dopamine, relaxing the mind and body.
Pets help to decrease anxiety, promote well being, give us a sense of stability.
Having a pet teaches responsibility, they provide routine and stability.
Playing with a pet stimulates the mind and body…
Pet therapy is regularly used in occupational therapy as a sensory modulation approach… excellent for children with autism or sensory issue’s… my daughter’s tactile sensory issue’s have improved drastically since I got her a pet cat… Our pets have provided my children with so many health benefits!
Three of my children are asthmatic and recently I’ve been urged to get rid of our cats because of the risk to my children… fair point… if there was any truth in it.
But not ALL asthmatics are allergic or triggered by Cats!
In fact only one of my children has an animal allergen trigger… to bird feathers… it’s ignorance to presume all asthmatics have the same triggers… excusable in somebody with no knowledge of asthma.
But, the person who wants me to break my children’s hearts by removing their pets has the power to put forth her stupid ideas and be listened to… I, as their mum, who shares a home with them and who knows them better than anyone on this planet am ignored.
Hmmmm…. children vs pets? Why do I have to choose???
I choose happy children and happy pets…. shouldn’t that be what’s important?

Just a mum……..?

I was never really maternal… My dreams were not to be a mum, I wanted to change the world.

I was a strange little girl, from a young age I was interested in activism, animal rights, human rights, the ecosystem… looking back I probably annoyed a lot of people…. not much has changed there!

When I fell pregnant at 16, it shocked a lot of people.

I was set on working in the film industry, I was modelling, I was focused and motivated…. a baby didn’t fit with my plans.

I still thought I could have it all, carry on with college, get my qualifications, have my career.. I had a good support network, I was intelligent… how hard could parenting be?

I read baby books, went to antenatal classes, I’d babysat and had a younger brother.

Life’s not always textbook.

Tiredness, morning sickness, asthma flare ups, water retention, panic attacks… I put college on hold till after I’d had the baby.

Not a problem, I spoke to my tutor and my parents and worked out care for my baby while I studied.

Wrote my birth plan….

My baby was premature.

The birth was traumatic. NICU was terrifying… and my baby did not look like I’d expected.

She was tiny, couldn’t hold her own body temperature or feed and had a tube in her nose.

I must have missed that chapter in the books I read.

Motherhood was not how I’d planned it and for all my preparing, nothing had gone to plan.

I did my best, focused all my energies on being a good mum but, I was a scared 17 year old and it was only through my mum and nannas support that I got through it.

My daughter was a year old before I felt like a proper mum.

By then I was 18 and expecting my second child, college was a dream for another day.

I felt more confident as a mum, spoke to the midwife, there was no reason that this time everything would go smoothly….

Nope. My second child was even earlier and at seven weeks old she caught meningitis.

She was critically ill, yet, she recovered, only to catch a different strain at nine weeks old.

It left her with disabilities.

And suddenly, I had to relearn everything all over again.

All of my children have been premature, two of my children have disabilities, two have long term health conditions and two are healthy.

Each pregnancy, each child has been different and each time I’ve had to get to know my baby to be the mum that they need.

That’s motherhood.

In the past 18 years I’ve studied blood disorders, epilepsy, neurology, prematurity, asthma, sensory disorders, autism, behaviour disorders, eczema, allergies, feeding issues, immunity disorders, anaemia, ibs, cfs, cp, skull defects, spinal defects, visual impairment, hearing impairment, learning disabilities, physiotherapy….. I threw out the baby books and picked up the medical ones.

I didn’t go to college to study art and make up… but, I’ve studied neuroscience and sensory disorders..

It’s been a full time job, exhausting, frustrating, terrifying, heartbreaking…. I’ve had to adapt, sacrifice and relearn everything I thought I knew.

I’ve had to learn to be their voice, to fight when I’m exhausted, to stand up for them when I want to hide away, to put myself second at all times.

When I think back to that naive, clueless 16 year old I don’t know wether to laugh or cry, but, I’m proud of how far I’ve come.

Being a mum is hard. Being a mum of a child with special needs is even harder, it’s a 24 hour, seven days a week job with no time off, no sick pay, no holiday time…

My life is not what I thought it would be.

But…

Every time my children put their arms around me, my heart smiles.

Being their mum is more rewarding, more fulfilling, more exciting and surprising than any job I could think of and when I look at how amazing they are and how far they’ve come…..

And I’ve come to realise… I have changed the world. 🙂

A Mothers Tale…..

So, here we are… at the end of a long and traumatic year.
A year where I’ve cried more than laughed, lost more than I thought I could take and seen miracles that have made it all worth it…
But, I fight on. I have too… I have a voice and I have to use it… but, I’m also my daughter’s voice and she needs me to use it.
Her story started almost 13 years ago…. once my pregnancy was confirmed, I wanted my baby, I loved her from the moment I saw her heartbeat at her first scan.
She was a twin, but, her twin was lost early on.
In February 2002, I felt something was different with my pregnancy but it wasn’t until March at my 21 week scan that it was confirmed.
My unborn baby’s diagnosis was severe bilateral ventriculomegaly. She had suffered brain damage and the fluid in her brain was so severe, only half her brain could be seen. The other half was flattened against her skull.
I was urged by a team of professionals, some world famous to terminate my pregnancy. We were told her condition was incompatible with life and even if by some miracle she made it to birth and survived birth, she would be in their words, ‘a vegetable’.
Well, she made it to 32 weeks. She was delivered in the May by emergency c-section after her heartbeat dropped, was flat for eight minutes and settled into the NICU at our local hospital.
We had a few hours of relief before it became clear that our miracle was utterly unique.
In her first week, we found out that this little girl had been put together differently.
She had an operation to fix a TOF on her second day, a shunt placed to drain fluid from her brain a week later… tests showed a skull defect, a spinal defect, a heart defect… yet somehow this tiny little girl was battling through.
She had cp, aggressive reflux, visual impairness, hemiplaegia… feeding problems, breathing problems.. but, she would not give up. So, neither did we.
There were many serious talks with the doctors… at one point DNR was put on her medical file and we started planning her funeral.
She had other ideas…
At 11 weeks old, she came home, with no oxygen, no feeding tube and only a few medications.
Our miracle was eight months old when she had her first seizure.
Since that day, she’s never really had a break from them..
But, she is not a child to be pitied.
As she grew up, more differences became apparent…. for every one as a family, we have adapted.
We were told she would never walk… at five she took her first independent steps.
We were told she wouldn’t talk, she sings constantly….
We were told she wouldn’t see her first birthday, yet, next year she is 13….
She has friends all over the world.. She has a sweetheart called Bear…
That is down to her spirit, her courage, her determination to live….. but, also us, her family.
Very few of her accomplishments can be contributed to the ‘experts’… in fact there have been many times that I have confronted the ‘professionals’ who are supposed to support her… and for that, I have been punished.
My daughter is different, her world is different.
Three years ago in desperation I contacted experts across the world begging for help in controlling the seizures which have got worse and worse and more frequent.
Seven years ago my miracle ended up on life support from a status seizure and I was told ‘ to expect more’…. after many assessments and finally getting professionals to work together, we were told, ‘she has autistic traits and sensory issues… these impact the way she communicates with the world and trigger seizures.
We can never stop the seizures, but, by managing the triggers, we can try to reduce the seizures.’
So, that’s what we’ve done.
We have changed our lives, made sacrifices, adapted… because we feel blessed to have her here..
And it’s helped. Every status seizure she’s had, she’s recovered from within a week.. she’s just managed Christmas for the first time ever…
Fantastic… everybody should be thrilled, all working together… but, no.
The ‘professionals’… these experts who don’t know her, don’t understand her, don’t care about her… now, want to know.
They’ve steam rolled into our lives and decided they’ll take over from here.
They’re great plan?
To take her. Place her into a strange, frightening environment, take her seizure meds away… and observe.
We all know that the end result is intensive care…. or death.
The final solution.
We’ve begged. I’ve cried, pleaded, shouted, refused… they won’t listen.
They’ve branded me an unfit parent…
They’ve involved my other children.. family members… friends…
I’ve asked them to listen. To hear us. To get to know our miracle… to do things around her. For her. With her best interests at heart….
Still they say no.

This child has fought her whole life to be here… She has fought to LIVE.
She has smiled and sang through difficulties that would have destroyed the majority of us… yet they want to silence her.

A great consultant once said to me, ‘we are experts in our medical fields, but, parents are the experts in their children… together we can give children the best life we can’…

I wish more professionals were like him….

My daughter lives every miraculous moment of her life to the full… with every breath in my body, I will fight to make sure she continues to do so.
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Contradictions and Fabrications…

Mummy loves me, she loves me not….
According to some authorities who have had very little contact with my children, my children are the victims of emotional abuse and neglect.
My children’s personalities have been called into question because they’re not stereotypical.
A 10 year old boy who claims to have a rollercoaster in his garden, 25 cats and who says he needs an inhaler because he’s asthmatic like his brother (to get sent home from school because he’d rather watch tv) is craving attention because he doesn’t get it at home (supposedly), a teenage boy who is called a liar by his school for reporting bullying, who is upset by his cousins premature death and who wears black, grunts instead of talking and likes rock music is reported as being depressed and ignored, a 4 year old who has sensitive skin, likes chatting and climbs on the settee is neglected and craves love….
Because my daughter has a learning disability and severe epilepsy and lost skills because of seizures, she is having her medical needs ignored..
Because we are different and do things in a different way, we are being persecuted.
Having Christmas decorations in the house with a child with autistic and sensory issues is being used as an allegation of me not looking after my daughter’s needs…
Refusing to allow my daughter to be admitted to an institution for observation with a high risk of this causing a status seizure and coma and possibly death has been cited as me putting her at severe risk…
Taking my son to the pharmacist, nurse and optician is me not getting medical help for his inflamed eye…
Keeping familiar furniture in the house even though they’re shabby to create a familiar environment to meet my daughter’s complex needs is cited as having a poor living environment…
Leaving a violent man and banning him from contact with my children is emotional abuse..
And the list goes on.
I have created a sanctuary for my children, I am fiercely protective of them and our privacy… this too is neglect and abuse.
A social worker recently said that my house is a warm and loving environment and that the love I have for my children is without question.
Then she accused me of emotional abuse and neglect.
But, I am the one who’s accused of being inconsistent and contradictory?

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The thief that tried to steal a little boys smile..

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There’s a little boy who holds a piece of my heart… he’s loving and affectionate…
He’s sensitive and kind.
He has the biggest, cheekiest smile, huge brown eyes, a mop of hair and I’m blessed to be his mum.
He’s my fifth heartbeat, he’s my rainbow baby, born after I lost a baby to miscarriage.
When he came along he healed me.
When I pick him up from school, he comes out, smile on his face, straight into my arms.
It doesn’t matter how hard my days been, he brightens it.
Everyday I ask him the same thing, ‘what did you do in school today?’, everyday he says the same thing ‘cant tell you, you wouldn’t understand’ with a cheeky smile on his face.
It’s our saying…
Today I watched him singing in his school play, when I picked him up, I said ‘what did you do in school today?’..
But today there was a different answer, his little face creased in confusion,
‘A strange lady with brown hair wanted to talk to me’
He said, ‘I had to go into a room with her, she asked me how many cats I’ve got… she asked me if my sister was ok. She asked me if I was happy. I told her somebody was being nasty about my mummy.’
Then he broke my heart.. with a frightened face he said,
‘Mummy, I don’t want a new family.’

I gave him a cuddle, told him I would never, ever, ever let him go anywhere and how much I loved him. I told him the strange lady was just mean.

The strange lady is my daughter’s social worker. She is supposed to support my daughter as a disabled child.
She’s been in our lives for a year…. Yet my children don’t know her.
I agreed to her observing my little boy in school, with his peers so, she could get to know him.
What took place was similar to a police interrogation.
She stole my little boys smile.
Well, I’ve stole it back.
I’ve just tucked him into bed… and he’s gone to sleep smiling, loved, safe and dreaming of Christmas.
No thiefs allowed.

special needs children…. make the worst siblings?

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It’s been said to me many times, in many ways…. patronising… well meaning…. viciously… by many people.

People who don’t have a child with special needs… who don’t have a sibling with special needs… who don’t love anybody with special needs.
Yet, they do have an opinion on life with a child with special needs.

‘Must be hard for the other children’
‘They must miss out on so much…’
‘Maybe you could leave her with someone else so, you could have quality time with the others..’
And the latest is an official report by a professional stating that ‘her complex needs will have a long term effect on her younger siblings’…

Here’s a new idea… why don’t you ask my children? Or me… or anybody that knows my family and has been to our home… or you ask my older children, who by the way are described as ‘intelligent’, ‘polite’, ‘loving’ and ‘happy’…

Strange as they too have the same sister.

Of course life is challenging, my little girl is complex, she is challenging and we have had to adapt.

Our way of life is unconventional, but, it works for us.

But, statements insinuating life would be better without our unique girl are insulting, hurtful and imply that children with special needs shouldn’t have siblings.

That they can’t be an important part in a happy family.

Now, my next statement will be judged as unreasonable, hysterical and confrontational by the professionals, but, I stand by it…

‘Children with special needs make the worst siblings’… not in my world, not in my children’s world, we wouldn’t be without her.

I love you my six heartbeats.