Tag: disabled children

Dear Daniel

On By rebelwithkindnessIn Dear Daniel, grief, Uncategorized1 Comment

I did it again, I pressed my phone to call your Daddy to ask him if he had put you on your milk yet. Why is my body still waking me a month after we have lost you? Why is my normal no longer my own?

Oh Daniel there are not enough words in the languages of the world to explain how much I’m missing you. Even now as I lie here unable to sleep I know I haven’t accepted the fact that you have gone. I’m a mess, a complete utter mess and for once in my life I do not care. My mind isn’t full of wondering, afraid if others are judging me in my sorrow, I don’t give a monkeys it hurts, it’s agony.

The house still echoes of you, our home, your home, your scent still lingers on the air. I’m still using your shampoo as a body wash so I can smell your sweet scent of strawberries all around me. It’s running out, would it be weird to buy it again? Maybe I will search for an actual strawberry scented body wash. Maybe that’s a compromise. How I hate that word right now “compromise” it feels that’s all I am having to do. Grieve whilst trying to move forward. Rest whilst job hunting, always having to give a little when I really haven’t got a lot left anymore.

I don’t have you anymore.

Oh Danny, I know they will call me soon to collect your equipment and whilst I know you are free from the disabilities that made you need them, letting them go is part of an acceptance I have yet to reach. I’m scared of the emptiness their return will leave behind. I know I have to do it at some point, there is so much to sort out. Your wardrobe is full of new summer clothes you have yet to wear. No sorry clothes you will never wear. This sucks!

Your toy box is still in the living room, your book case full to the brim. Talking of books the new book written by Jacqueline Wilson came today, it shocked my heart. I had forgotten that we had put it on pre-order, “ A new adventure of the Faraway tree” do you think Moonface will still be in it ,maybe Silky too. We loved reading the original written by Enid Blyton together, I’m sure we would have loved this one too. Maybe when I get you home I will read to you. Is that a strange thing to do? Maybe I will just curl up under your blanket with Edgar and read it. Yes I’m going to cry, come on everything is making me cry. Do you know how hard losing you has been?

I guess I need to try and sleep, the irony is that now I have no one waking me at every two hours but I’m sleeping less than ever. I am hiding in my bedroom more than I should be, I’m not sleeping I’m just pretending you are downstairs with your Daddy. I know it’s not helping but let’s be honest nothing does.

Hey beautiful boy, I’m trying I promise I am. Giving up would be easy but I know you and Livvy didn’t teach me that way. Your both fought to live; I promise I will try to honour that. You guys need to help though, sprinkle me with some heart healing dust from heaven, how I wish that was a real thing. I remind myself that I “grieve with Hope” well I’m working on the Hope part, but I’ve got the grieving down perfect.

Oh my gorgeous handsome son, missing you is so so hard. Just to hold your hand in mine once more, yet I know once more is never enough, would never be enough.

So it’s been a month my dear boy, one whole month since your took your last breathe this side of heaven as you lay in my arms. As I held your body close to mine your spirit ran to Jesus.

Until my time comes, until I can run to you and Livvy.

I will miss you

Forever heartbroken

Your Mommy

Xxxx

My beautiful boy xx

Dear Ed

On By rebelwithkindnessIn UncategorizedLeave a comment

Dear Ed

I have watched your programme on the social care system in tears not because of the stories you shared (although they are heartbreaking) but because this is truly only the tip of the iceberg. Carers are the backbone of this country holding the weight of the social care crisis upon them, yet how long can they continue to do so before they break, the whole system is hurting.

Whilst I really hope and pray your programme brings awareness to those in power I do feel that your journey cannot end here. To champion carers I ask you to please champion us all, so I invite you to come meet,visit, grab a cuppa with parent carers of children with disabilities like myself. Those that also care 24 hours a day with little respite or support and those who battle daily for our children to be seen worthy by our current government.

Let me introduce you to my son Daniel, he is a 7 year old bundle of love. He is cheeky, full of life and loves animals and his favourite person is Peter Wright the Yorkshire vet and I’m kind of ok with that. Yet to those in power he is a burden on society, when I ask for support I’m told priorities have to be made, when I ask for his basic needs to be met I’m told of a policy that doesn’t allow for it. This last year the word Covid could have be easily added to the dictionary with the definition “useful excuse “. I am not at all minimising the impact of the pandemic I like so many others have lost loved ones but when the word is used as an excuse I find it insulting and shameful. These issues were there before the pandemic and Covid has literally just been the light that has shined upon them, bringing them out of the shadows, yet it’s being used as an excuse to hide behind.

Parent carers are at the point of being broken, exhausted with the constant battling for services, the constant begging for support. Drained by the daily strain of caring, isolated in a world many cannot understand or even want to. Parents wanting to just be Mom and Dad instead of nurse, carer, physio and so much more. Our children have been forgotten, seen as not worthy in all areas including the Covid recovery plan. My son has been out of education since March of last year, his emotional health has been hit so hard by the isolation that he is now so scared that everyone is going to leave him that he panics if he cannot hear us. This panic has seen him hospitalised, panic attacks so severe that Drs nearly ventilated him before deciding to sedate him instead. Should this happen to any 7 year old?

My son is being judged by his disabilities and conditions rather than by his spirit and determination. Assuming disability means a lack of understanding, judging communication by the lack of words.

Personally I’m exhausted waiting on a GP appointment to finally seek help for the pain that I am in. I’ve had one full nights sleep since 2016 but I cannot find carers to take on my direct payment hours, the level of his complexities scary in comparison to the wage I can offer. My husband and I had been out of work since the beginning of pandemic, we are foster carers but shielding doesn’t allow this to happen. We are lost both physically, emotionally and financially.

Yet I’m faced by comments like “well you are loaded” it’s seems my child’s disability payment is vast in the eyes of others , oh and don’t forget our free van, what a lucky boy my son is, ignorance feeding the isolation.

Yet what happens if I break who will then care for my child? What if I get sick, this fear has eaten away at me for the last 18 months the little sleep I get broken by this anxiety. Even now I am scared to go anywhere for the fear of bringing the virus home to Daniel. We celebrated our 25th wedding anniversary at the beginning of this month at a McDonald’s takeaway, what rock an roll lives we lead.

Yet this situation hasn’t just arisen due to the pandemic, this as you highlighted in your programme is partly due to the reduction in local authorities budgets which has dramatically hit families like mine. It is also due to the lack of respect for the job of a carer both paid or unpaid, the dismissing of what is a skilled and demanding role. Also things like respite or home care is a not a priority to most and doesn’t win votes, well that’s until they need it of course.

Our children, are the forgotten ones, the pandemic began and our doors closed and services disappeared. Children waiting for equipment for far too long, wheelchairs to small yet the only way a child can travel. Isolating and heartbreaking.

The void of this pandemic has been filled by some incredible charities but is it their place to protect the vulnerable or should that be the role of our government?

I hope I am preaching to the converted, your empathy and compassion shown on this programme made me wish your were back in politics. Maybe we need more politicians and policy makers to go on a journey like yours.

All I ask is that this programme is not the end of your discovery into the world of social care, that you would consider coming and meeting with families like mine, with the charities advocating for us.

The government says “every child matters” help me and many others make sure our child matters.

Daniel matters.

Then there was silence

On By rebelwithkindnessIn Uncategorized2 Comments

“I want my son to matter. I want him to be spoken about.“

I cried, I am so frustrated with myself but I cried.

On Friday 10th September 2021, I attended the DCP parliamentary event to raise awareness of the impact of Covid-19 on disabled children and young people. As a parent carer I was asked to discuss the impact of Covid -19 on our lives. The event was hosted by the lovely Mary Foy MP and the fantastic DCP staff.

I had been given the list of questions before the event, I had my answers prepared, I so wanted to be professional and get across the impact of how Covid-19 has affected our lives, but as soon as the question was asked I cried.

I cried because I had listened to the young people as they shared how they had been affected by Covid-19, their words, their struggles, I cried.

I cried because there I was asking, begging parliamentarians to see my son, to see me.

The week of this meeting we had been away to Yorkshire for a few days and we had to return because of Daniels need for bloods and his levels checked. We also came home because we couldn’t afford to book an accessible place to stay and we were physically broken.

The night before the meeting I had held Daniel tight as he tried to breathe through another panic attack. Why should a seven year old feel so much fear?

The morning of the meeting my back had given up lifting Daniel as we still wait for his hoists and adaptions to be done nearly two years on from the planning, Covid delays.

I cried because I was exhausted and I was tired of pretending to be brave.

This event mattered, it was an opportunity for those attending to hear firsthand the impact the pandemic as had, not the numbers, but the people. It was important to give the parliamentarians the opportunity to hear our stories but also to ask us, how, why and what could be done. To reach the ears of those that can effect change, their voices heard.

I cannot find the words to do justice to the impact of Covid- 19 on my family, on Daniel. How do I find the words to describe the fear of a young boy who felt abandoned, who felt forgotten? A boy who has been hospitalised due to separation anxiety, the fear that I will leave him like others. How do I explain the impact of watching my daughter sob heartbroken because her baby brother is reaching for her and she cannot hold him, cannot hold him close and tell him it will be ok, because its not.

How do I tell you about the fear that my son may get this virus and that it may take him from me, the anxiety that crushes my chest every time I have to engage with the outside world? What if I caught the virus, who would care for him, who would love him the way he deserves to be loved?

Words are inadequate when I see his body stiffen and his pain levels raise due to no physiotherapy beyond what I can do, but I am not a professional. Sitting in a wheelchair that is crushing his chest so that his breathing is harder, new wheelchair delayed because of Covid.

What words describe the exhaustion of my husband and I managing a 24 hour care plan with no support, sleeping in shifts, broken, scared and exhausted. Our beautiful boy dependant on us for everything yet our human bodies were failing.

Covid-19 has impacted so many, I am not trying to underestimate that, but I have sat watching our politicians on the screen waiting, praying for them to talk about my son and those like him. To mention the parent carers isolated at home, yet no words are spoken for them.

This meeting mattered and I am annoyed I cried but how could I not, I am broken, I am isolated and I am angry that my child was forgotten.

” I want my son to matter, I want him to be spoken about”

This meeting was to highlight and raise attention to the research and report published by the Disabled Children’s Partnership

 Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families.  It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.

Key findings in the report are that –

  • Children and families have been isolated and abandoned; and not been listened to.
  • Covid restrictions meant services were stopped or reduced; and many are still slow to return.
  • Mental health and wellbeing of all the family has deteriorated.
  • Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
  • The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.

As a result of our findings, we have identified five vital steps for central government, local government and the NHS.

  1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
  4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
  5. Invest in disabled children’s health and care services through the Comprehensive Spending Review.

This report is the tip of an iceberg, Covid-19 has only highlighted a system that was already failing, underfunded and uncared for. Children and young people with disabilities matter, they deserve to live a fulfilled life whatever that may look like. They deserve love, compassion and the chance to achieve. But most of all now as we try and return to some normality of life with Covid-19 these children, these young people need to heard.

My son matters, hear him.

Why did you want to foster?

On By rebelwithkindnessIn UncategorizedLeave a comment

I asked on my socials for some ideas of blogs that people would like to me to write and one question asked was “Why did you want to foster? “

So here goes

“Why did you want to foster? “

I think I was 12 years old or maybe 13 as we have moved up into the bigger school and there was a boy in my year who was in my thoughts then a ‘nightmare.’ He was always arguing with the teachers, always late and often coming to school dirty. Then one day he just seemed to stop coming to school, just disappeared until a few weeks later he returned but you could barely recognise him, he was so different, in clothes that fit, clean and seemed so happy and his behaviour in school was really improved. He was trying hard in lessons and actually listening to the teachers. About a week after he had returned, we ended up being partnered up and being the inquisitive (nosey) person I was, I asked him what was different, why he was different? He then told me that he had been moved out of his family home into foster care and whilst he missed his family his life had changed a lot, his foster carers listened to him, cared for him and were worried about him. He told me “That he felt wanted for the first time ever”. This obviously shocked me, I had no idea what his life had been like but the difference in him stayed with me for a long time and as I go older the desire to foster was grown in my heart. I remember telling my husband when I met him, I wanted 6 children and to adopt and foster many more and bless him he stayed around and came along for the ride. 

Obviously 12-year-old me wasn’t going to become a foster carer but after we got married Alan and I enquired into the process and after discussions and Olivia’s diagnosis we decided that maybe when the girls were older, we could foster alongside caring for Livvy. As you all know life did not go as I had planned, in November 2008 we lost Olivia to a rare virus which she had contracted due to her diagnosis of Rett Syndrome. Our hearts were broken and in all honesty our minds were literally trying to make it to the next day. 

Olivia died on November 7th and for what seemed an ironic moment that was the year I had finally got myself organised for Christmas so there sitting in my wardrobe haunting me was the Christmas presents I had brought for my beautiful girl that I was never going to get to give. Practically I knew I could return the gifts for a refund, but I just couldn’t, I had brought these as a gift, so I needed to do that somehow, gift them. So, after an internet search we found our local children’s home and called for a visit to drop off the gifts. 

Turning up at the children’s home was strange, obviously we were still in the midst of grief, but I just felt so sad that homes like this had to exist. I was pleasantly surprised when we got inside and shocked that the home was actually for children with disabilities, I hadn’t realised that when we called. We chatted for a little time with the manager who explained all the fantastic things the children did and what they had achieved but I asked the question why these children weren’t in fostering placements etc. The reason was simply because they struggled to get people to foster children with disabilities, they are fearful which we understood completely it is far from an easy but yet reason this stayed with me, stayed with us. When we returned home, we spoke to our girls about how we had taken Livvy’s presents to the home and how lovely the children were. Our girls’ questions were like ours, “why are they there” “why doesn’t anyone foster them” and the question that came back to a few days later “why don’t we foster them?”  You see fostering had been a family discussion for many years, our girls always knew our hearts and here they were asking us to live our hearts. 

Well let’s be realistic here I was in pain, I was in pain like nothing I had every felt before. I missed Livvy with a desperation I did not know I had. I felt lost, I felt empty. My days stretched endlessly before me, caring for Livvy had been a 24-hour job now I was redundant and just did not know what to do with myself. Yet regardless of my desire to love on those children that needed it, my head wasn’t there. I had to make sure my decision, our decision was made for the right reasons not just to fill an emptiness which that let’s be honest could never be filled. But the desire didn’t fade in fact it began to burn brighter in my soul and my girls well they never let it drop, they came up with a campaign to get us at least enquire about it. So, enquire we did, enquiry led to interviews, interviews led to an application and application led to panel and panel led to approval. 

In September 2009 we were approved as foster carers and it was a fantastic day, the joy of knowing we were going to make a difference really blessed our hearts, yet it was not one which we could really focus on as the very next day we were on our way to meet a beautiful boy that captured our hearts, our very first placement. 

Over the last 12 years we have only had 4 placements as we foster long term and whilst I have to say fostering is a profession it has allowed me to hold hearts in mine. The joy we as a family get from watching a child lead a fulfilled happy life knows no boundaries.  It has not been an easy journey, we have faced pain, a lot of anguish and often felt that maybe it is all too much, but the children, the children whose lives we get to change are worth it. The children we get to love upon are so worth it. 

It is so worth it. 

  • If there is any other subject you want me to cover here on the blog please get in touch.
  • @rebelwithkindness@gmail.com

It’s your fault

On By rebelwithkindnessIn Speak UP3 Comments

Having a child with disabilities means I often find myself meeting with professionals who are supposed to be in place to support and guide me and make sure my child’s reaches his full potential. I use the world supposed because sometimes and some would say often this doesn’t happen.

I have met some amazing people who are incredible at their jobs and I have met some doozies who seriously need to either consider a career change or at least attend a training course on compassion, respect and understanding.

Yet thankfully I have never come across one like the one my friend has met this week. My dear friend is at breaking point she adores and loves her child with every breathe she takes but after literally sleeping for less than three hours on a good night for the last how many years she is broken. After asking again for the numerous time for a little support and respite she actually told a professional that she is close to breaking, she is physically and emotionally on her knees. To which the so called professional replied “well how is that going to benefit your child, you have a responsibility to keep yourself well for your child”. What the **** seriously I’m not sure how my friend stayed calm in this situation without demanding a manager or someone at a higher level but she did (I actually think she is just too tired to fight anymore). Yet how, just how can a someone say this, it’s not as if my friend wouldn’t love a good eight hours sleep each night, the chance to spoil herself and have a haircut, a night out on the town with the girls. She would desperately love this but as a sole carer, her child has and and always will be her priority. How is her exhaustion her fault?

I’m sorry but do people really believe this ? That parents of children with disabilities just cannot be bothered to take care for themselves.

Let me give you a little breakdown of my day,

It’s starts pretty much where yesterday finishes, I have medication to give at 12am, 6am, 8am, 12pm and 6pm. I also have an overnight feed to prepare from 12am till 7am, also another 8 Bolus feeds to give throughout the day.

I have a minimum of 10 nappy changes each day with all nappies weighed and recorded.

My child sleeps maybe 3 hours max at a time needing comfort, moving and generally loving throughout each night and that’s on a normal night. This can double or treble if unwell in any way.

To leave the house, besides feeding, changing and lifting my child into his wheelchair I also have to pack feeds, meds, and emergency protocols and emergency meds. I cannot ever just wing it and just grab my handbag and leave. His life depends on me carrying the medication he may need.

Let’s also realise that normal chores are often doubled or tripled, washing for example does not consist of the normal one outfit a day but the numerous we need from unexpected changes, sheets bedding etc etc.

Add to this caring for my child’s needs, dressing him, bathing him, moving him, lifting him and of course playing, amusing him and loving him.

Oh I almost forget I’m also my child’s personal assistant arranging, rearranging and chasing his numerous medical appointments, the EHCP paperwork, ordering his medications, his equipment and so on. I’m also his advocate fighting for the things that he needs to live with a quality of life he deserves, his voice and his fiercest defender.

So please tell me where or when I am supposed to take care of myself? And guess what I have a supportive husband, great older children and actually a care package that is working for me. For a professional to suggest my sole carer, 4 hours each month respite friend literally is bringing her ill health on herself makes me see red.

Times are hard, right now we have a government that believes everyone can make do a little more, well everybody besides the top 1% of course. My friend already has to make choices between sleeping and eating but hey I guess she can make do a little more. I mean who needs food? She loves and adores her child and so wants the best for him but all she was asking for was a little compassion and support, is that too much to ask?

If she does break and her child goes into a residential facility where he will need 2 carers to support him at all times he certainly will be costing this government so much more.

I actually didn’t know what to say to my friend when she told me what had been said, part of me wanted to go in kicking and screaming and demanding an apology for her. Yet I’m realising the problem is a lot wider.

When you have train companies believe it’s ok not to make trains accessible for disabled people, when you have superstores using disabled children for advertising whilst depriving them of the basic facilities to have their care needs met, I realise this world needs to change.

When you live in county where almost three quarters (72%) of carers have said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

You know things have to change.

I welcome the news released yesterday that a joint report by two Committees of cross party MPs, the Housing, Communities and Local Government and the Health and Social Care Committee, calls for new contributions from individuals and employers into a dedicated fund to be ringfenced to help pay for the growing demand for social care in the future. Highlighting the immense strain that the current system is under, including families providing unpaid care, the MPs have proposed a series of measures including a new “Social Care Premium”.

But there is a long way to go..

Figures released by Carers UK show that

1 in 8 adults (around 6.5 million people) are carers

By 2037, it’s anticipated that the number of carers will increase to 9 million.

Carers save the economy £132 billion per year, an average of £19,336 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

Carer’s Allowance is the main carer’s benefit and is £64.60 for a minimum of 35 hours, equivalent to £1.85 per hour – the lowest benefit of its kind.

People providing high levels of care are twice as likely to be permanently sick or disabled

72% of carers responding to Carers UK’s State of Caring Survey said they had suffered mental ill health as a result of caring.

61% said they had suffered physical ill health as a result of caring.

Over 1.3 million people provide over 50 hours of care per week.

Again I will stress there is a long way to go.

Yet how hard or how little would be needed for those professionals in the lives of carers to actually think before they speak. To actually show compassion without passing judgement.

My dear friend hasn’t the energy to ask for an apology and right now is literally holding it together in her words “with Gods grace and the love of my boy”. But how many more are out there struggling feeling alone and broken?

I know how hard it gets and as I have said I am one of the lucky ones.

All I hope is that change will come but until then if you are struggling, if you are feeling alone please get it touch because none of us can do this alone but together we can and will make it.

I’m on the T.V

On By rebelwithkindnessIn Uncategorised, Uncategorized2 Comments

So a few weeks ago I blogged about my youngest daughter winning the Mayor Civic award  due to this amazing achievement Brodie and I were asked into our local tv station to share more about the award and Livvy.

Take a look at our interview here.

Be kind, I love to talk and Brodie bless her got stage fright.

 

 

If you want to learn more about Livvy’s Smile check out our website Livvy’s Smile and if you are interested in joining us to celebrate Livvy’s 16th Check out the facebook event here…

There has to be a line they don’t cross.

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

I’m on holiday right now trying hard to deal with memories that are haunting me whilst creating new ones to cherish and love.

Yet even here in the middle of nowhere I cannot avoid the arguments and discussions following the interview given by Samantha Cameron about the loss of her son Ivan.  

Part of me wants to be naive right now and believe that this a mother just opening her heart about the pain and devastation she has felt from the loss of her son.

I want to remember the shared look we exchanged as we acknowledged the loss of our children. How that brief moment in Downing Street span across economic backgrounds into empathy and shared understanding.

As a grieving mother I cannot imagine a mom using this loss as a campaign tactic.

Please no.

Yet as naive as I wish to be the Cameron’s  have already proven that all experiences, all struggles are open for exploitation.

We remember David Cameron telling us he understood  how hard it is to raise a disabled child. How he will be supporting families as they struggle. Only for him to walk back over all his promises in a dramatic fashion. With cuts to services and benefits that have dramatically left people struggling to survive. 

Cut in services

Bedroom tax 

Local government budgets being slashed leading to less respite, play schemes etc etc.

And so much more. 

Even now if leaked information is to be trusted if the conservatives stay in power there will be more cuts coming to those who are disabled and those caring for them.

To be truthful I am lost for words. 

The whole situation is making my stomach ache.

I want to believe that this story, that Samantha Cameron’s interview is not part of the campaign trail.

I want to honestly believe that she is not exploiting the hearts of those like myself who grieve desperately for their child.

In fact I have to believe this. 

To accept anything else would make me question humanity.

Would make me question everything.

Surely there has to be a line a political party won’t cross?

   

The crazy bunch of people I love.

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

So after I  had published my countdown post to Special Kids in the UK I found myself re-reading it from the perspective of someone who didn’t know the people I was writing about.

 

I wondered if I had given you the impression of a camp that was about disability and only disability.

 

Now after spending a crazy wonderful week there I want more than anything to give you a little more insight into who we really are.

 

Yes Special Kids is a charity which was formed by parents with children with disabilities for the use and support of other parents in the same situation.

 

It is true that this is the life we live, but it isn’t all we are.

 

We are fun crazy people that have somehow found ourselves in the world of disability.

 

Yet we aren’t just parents and carers of children of disabilities and our children are far more than just syndromes and conditions.

 

We are a diverse group of people.

 

From wine drinkers to tee-totals.

 

Drag queens to doctors.

 

We are sporty, creative, energetic,caring, imaginative and eccentric.

 

We have parents with full time careers and we have stay at home parents (a full time job in it’s own right.)

 

We are each unique and that’s why it works.

 

We are different but united.

 

Please don’t imagine this camp as a group of people sitting around a camp fire full of woe me for life.

 

You will find us sitting around that said fire laughing at the antics of our young adults, roasting marshmallows chatting into the small hours.

 

You will find us dressing up in weird and wonderful ways, wheelchairs transforming into race cars and families transforming back into the stone ages.

speshfest 2014(2)

Sharing life with others that understand that really get it.

 

Life is about living and the people that I camp with understand that more than most.

 

Special kids in the UK camp is about support and compassion but mostly it’s about friendship and laughter.

 

I am so blessed that I get to call this crazy bunch of people my friends.

speshfest 2014

 

So thankful that one day about 9 years ago i came across Special Kids in the UK.

 

I love these guys xxx

 

*Credit for the photographs go to members of Special kids xxx

 

My A-Z of Special Kids in the UK camp.

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

The last few days I have been having a fantastic time at Special Kids In the UK camp.

I wasn’t sure how to describe my time away until I wandered past a group of campers playing the A-Z game in a rather unique way.

So here is my time at camp from A-Z.

 

A – Amazing

B –  Beer o’clock

C –  Caring

D –  Drag queens

E-  Enjoyment

F-  Friendship

G –  Games

H-  Hugs

I-  Informative

J-  Jumping

K-  Karaoke

L- Livvy & Lucy- Mai

M-  Memories

N- New friends

O-Old friends

P- Pig roast

Q- Quality

R- Restore

S- Special

T- Tea tent

U- Ugly bug ball

V- Volunteers

W- Wobbly walkers

X- X-citing

Y- Young & old

Z-zzzzzzzzzzzzz

 

Is it my fault my child is disabled?

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.

 

I blamed myself for such a long time as I knew how important those first days of bonding were.

 

When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.

 

I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child

who wouldn’t even look at you.

 

The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.

 

I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.

 

I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.

 

I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.

 

In the end I retreated, my own world was safer.

 

Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.

 

The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.

 

Was this my fault again?

 

Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome.  A week later the neurologist confirmed it.

 

I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.

 

I couldn’t have caused it.

 

Something inside of me changed right then as I read the research into the condition.

 

“Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old. ”

 

See I wasn’t wrong.

 

This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.

 

It wasn’t my fault,

 

This realisation gave me the courage to break the chain of lies that were in my head.

 

No more.

 

I was determined to do as I had been.  Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.

 

The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.

 

It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.

 

Yet somehow the comments from people and professionals had cast doubt in my mind.

 

Was it my fault that my daughter was disabled?

 

No it blooming was not.

 

It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.

 

I couldn’t be responsible for that.

 

This knowledge set me free and the fear dispersed.

 

I was then able to live life for the gift it was.

 

Livvy emerged slowly from her own world and her mischievous spirit started to show.

 

My other daughters just grew and bloomed.

 

Life was good.

 

Then in 2008 we lost my beautiful girl.

 

As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”

 

Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.

 

There was nothing I or anyone could have done.

 

One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.

 

Maybe it’s ignorance maybe at times it is spite.

 

I can only be responsible for my own mind and my own thoughts.

 

I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.

 

 

I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.

 

Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.

 

If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.

 

I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.

 

The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.

 

Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.

 

Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.

 

But with the right help, support and friendship your life can and will be a good one.

 

My life is so different because I got to be Olivia’s mom and for that I am truly grateful.

wonderful gift