Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.
Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.
There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.
Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.
Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.
When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.
Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.
You see people are not their disabilities they are simply people. A child with disabilities is simply a child.
So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.
Over the last few weeks on social media there has been a lot of conversation about the way we talk and represent our children with disabilities. Some I have agreed with and some I haven’t. Yet I have avoided entering into the conversation as its been rather fractious and in all honesty I’m been overwhelmed by just doing life. Yet another message I’ve received today has made me feel like I need to speak up. Because when a point of view or a fear of being wrong stops people from asking for support, stops people reaching out for help, well in my eyes that’s a failing. We cannot educate or make real change in an atmosphere of fear. When the anxiety of being judged stops you from asking questions you are actively stopping progress and development.
Firstly, I want to say that being any kind of parent is hard and I can guarantee that a perfect parent does not exist. Yet for the most of us our children are our world and we wake up each day trying our best to love them and raise them to be decent humans.
Being a parent of a child who has disabilities is all this and more. Beyond typical parenting we often have to become medical experts, voices and advocates for our children.
So secondly, please be kind to yourself, life is a journey of learning. How boring would it be if we all knew everything, though believe me I am beginning to believe that some seem to think that they do.
Thirdly I just want to share my opinion, my own thoughts, maybe not unique to me but honestly it is coming to a point that I do feel that my posts need to have this disclaimer.
Anyhow I’ve had the gift of parenting a child with disabilities in two different decades and I do feel this gives me a perception of change.
When Livvy was born in 1999 disability was still very much a hush hush pity situation. The number of times someone would apologise for my child to me was appalling. You see social media wasn’t a massive thing in my world and actually it was rare to come across an image of anyone with a disability. If it was it was often a portray of limitations for fundraising etc. This made my world small, there wasn’t anyone I could celebrate my child with, in fact I think many would have preferred if I hid her away. No one talked about what she could do always what she could not.
Limitations not achievements.
This simply sucked and this was the reason I actually first started on social media in hope of changing the narrative. My daughter was a beautiful, inspiring, intelligent, amazing girl and I wanted to share and celebrate all her achievements just like I did with her sisters. So that’s what I did and slowly and surely the conversations around Olivia began to change. I stopped the pity party being the narrative of her life. Unfortunately, Livvy passed away when she 9 and a half but when we share memories of who she was they are joy filled, adventure packed, flirting moments of a life that was such a gift, such a blessing.
Still it was hard and it was a struggle and I often felt extremely lonely. I did have to hide the pain, exhaustion to keep the true joy of Livvy. It was rather a one-dimension conversation, I couldn’t risk being open in case the pity party started again.
Fast forward a decade and a bit I am now parenting Daniel in a world where yes discrimination still very much exists but it is definitely not as lonely. I love that my social media is full of children being celebrated for their differences. That disabilities are not being hushed away in a corner hiding, shame filled world anymore. That I can share a photo of a Daniel and my comments received are full of joy and celebration and the ” oh isn’t it a shame” mentality is leaving the framework of acceptance.
Yet what I really love is the community of people who reach out to love and encourage one another. Parenting is hard but fellowship and having a squad of cheerleaders chanting in support makes it a lot easier and a lot less isolating.
So where am I going with all this?
The fact that the world is more inclusive is a fantastic thing, whilst there is a long way to go for full equality believe me, I’ve seen a lot of change in the last decade. Advocating for our children is definitely what we should be doing yes the conversations regarding disabilities should be changing. People are not their syndromes, conditions or abilities. They are their hearts and minds. Yet let’s not allow this desire for equality stop the support that we give one another. Let’s not strive so much for correct terminology that we lose hearts.
The reason I have written this is because over the last few weeks I have been contacted by parents of children with disabilities who are scared to share. One had shared a family photo with a caption that caused her backlash, there was no reason. It was another’s need to educate that distracted from the truth. The photo shared was a family filled with love and laughter. Their children were all together enjoying life, making memories. That one parent is now scared to post again. Her words to me were “it feels like whatever caption I write would be wrong. I need this space to share my life, I accept the comments from people who don’t get it, but now from those who should has made me feel really low”.
Another parent asked me how she should word a post asking for some advice as she had seen others face criticism for what one had said “degrading her child”. Yet the thing is who else can she ask? It wasn’t degrading it was sharing reality in hope of advice.
You see those that live in the disability community we do have a lot to learn but our mess ups are based in inexperience, lack of knowledge and in my case often life fatigue. But we are and always will be our children’s greatest cheerleaders. We love and cherish the very bones of our babies. So, as it all forms of parenting we will screw up, but for the most part it is done with love. If our children are cross or annoyed with us when they are older, we can remind them of this and that as human beings we live to learn and as they mature I hope they realise that parenting isn’t easy and cut us some slack.
Yet as a community we need to be careful, I’m all for progression and I strive for equality for all but let’s not lose what’s special about this world we live in. Let’s love one another, support one another and be a safe place for all those trying their best in a world they wasn’t expecting. My Grandad often said “be the friend you need”.
Let’s be the friend we all need in this wonderful totally unplanned life.
As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point.
It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?
I didn’t have to think about it that long because I truly think my answer would be no.
I don’t think my viewpoint would change.
You see no amount of money can replace my compassion or my empathy.
But most of all money couldn’t replace my need to feel part of something.
You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness.
The consumerism lie that things can make you happy has been pushed down our throats way to long.
Yet the truth is far from it.
The newest model phone can be fun, but will it hug you close as you fall asleep?
That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?
Community and relationships are the greatest of things and money cannot buy them.
Having money won’t stop me loving on children who have no place to call home.
Stop me fighting for services and support for my friends who are either disabled or raising disabled children.
Having a full bank account will not stop me encouraging those who need support or guidance.
I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it.
Yet whilst the money would make life easier it wouldn’t make me complete.
It’s my, family, friends and passions that do this.
This week is World Autism Awareness Week and we are Speaking Up and standing up for autism.
Its not just about raising funds for autism support it is about spreading the word and raising awareness.
Here are some facts and statistics about autism.
Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound – sometimes devastating – effect on individuals and families
It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.
Autism is much more common than many people think. There are around 700,000 people in the UK with autism – that’s more than 1 in 100. If you include their families, autism touches the lives of 2.7 million people every day.
Autism doesn’t just affect children. Children with autism grow up to be adults with autism.
Autism is a hidden disability – you can’t always tell if someone has it.
While autism is incurable, the right support at the right time can make an enormous difference to people’s lives.
Raising two children who both have a diagnoses of autism has made me really realise how vast the spectrum is and its this degree of variation that leaves many struggling with little or no support.
There need to be more investment placed in early and true diagnoses and support given.
There also needs to be more support to those who care for children and adults with autism.
I can honestly say that why I love my children with all my heart at times autism has led me to some isolated places. Its hard watching your children struggle to understand, get frustrated or anxious. Its also hard when you are the receiver of their frustrations. Having the right support and guidance is invaluable.
So that is why this week I am Speaking Up to raise awareness of Autism.
I’m excited to share with you the news that I am now blogging over at the Fostering with Progress blog where for the next 6 months I will be writing a number of articles on a variety of foster care subjects.
As many of you know I have been fostering now for over five years and I am extremely passionate about what I do.
Here is my first post which I am also sharing here; as I think it is interesting for all not just foster care professionals.
One of the most common misconception’s regarding foster caring is that it’s just like raising your own children. A agonizing stereotype I know, yet this limited perspective of what is really involved, also leaves many believing that you need to have raised your own children to be a foster carer which actually is not the case.
Quickly I shall dispel other common pigeonholed viewpoints, yes; you can be a parent already, no you don’t need to previously have had a child of your own. Your marital status, sexuality, religious or cultural background will also not prevent you from fostering.
Fostering is a profession, it involves a skill set that extends well beyond the typical parenting prowess, yet the only real qualification you need to have is the desire to support and guide children. There are various types of fostering; including Emergency, Short- term, Long-term, leaving care, short break, parent and baby, and specialist care, yet all share an identical factor, the placement of children, whom through no fault of there own have been separated from their birth family and are often vulnerable, damaged and hurt.
In the best cases you are dealing with bereavement, while the worst circumstances can involve abuse and, or neglect, at first this seems a rather bizarre assertion, the cold reality however, is a child who has suffered neglect / abuse, or even both, often suffer with more psychological stresses and fears.
Unlike most caring professions, fostering gives a new meaning to the term full-time, it’s far cry from shift based employment, and you don’t get to go home and leave it all behind. Fostering isn’t easy and to be truthful it shouldn’t be, it’s a profession, which holds the wellbeing of a child in its hands. Yet as a foster carer you can lead a fulfilled career whilst making a difference in the life of a child, plus you can achieve personal development and qualifications that are suited across the care sector. Though each company is different, my agency; Progress Care; certainly encourages us to extend our skill set and education.
While money should never be the reason you become a foster carer, an income is necessary for the majority to be able to foster, the provision of a living wage enables us carers to flourish in a role that can be exhausting and challenging and yet personally for me, has been so rewarding.
You get to make a difference in the life of a child, complete job satisfaction.
I must admit that the last week or so i have been glued to my chair watching the antics of the housemates in “Celebrity Big brother” while I have no interest in the counterpart “Big Brother” there is something about the celebrity version that has me hooked.
It’s just the inquisitiveness part of me that just wants to know what these people are really like. The truth not just what we read or hear about them in the media.
So when I heard that Deirdre Kelly aka white dee was entering the house i was so excited i could have wet myself.
Since Benefit Street was shown I have loved this lady. While others saw a benefit scrounger I saw a lady with so much compassion.
I really admired her courage entering into the big brother house not knowing how she was going to be received.
I also knew that finding herself on show could have really affected her depression but give it up for the lady she wants to better life for her and her children so she walked up those famous steps.
I have loved watching the show, there are characters i am already loving to hate, James for one. Honestly if that man says “let me explain how it was” once more i may scream and surprise ones that i have taken to my heart, George for example. But the front runner and still my favourite is Mrs Kelly.
I love that lady.
So imagine my disgust to come across tweets laughing at her sadness that was shown on last nights episode.
The lady may or may not ( I can’t speak for her) seems to be finding herself on a roller coaster of emotions. Missing her kids, wondering how she got there and generally fighting the evil of depression.
I have seen tweets finding this funny.
Tweets accusing her of faking it for the money
And the worst ones saying that depression is the biggest con of all time.
I wonder what is going wrong in this world when people can say such things.
Why do some thing its ok to tweet such vileness?
Tweet with kindness it won’t kill you.
I only hope that Dee’s children are not reading such crap and are watching the television being super proud of their mom.
I think the world needs an education regarding depression, I have heard it quoted as “rich persons syndrome’. “Benefit scam” and a lot worse.
Depression is a devastating illness which can and does rob life from many.
As for those tweeters i hope everyone unfollows you and that way you can stay being sad and horrid in your own little world.
While i believe and advocate for the freedom of speech I do not believe that people need to be so cruel.
It’s not just about Big Brother its about so much more.
The fact that we have so many turning to social media to breed hate rather than love.
It’s just wrong.
As for me I will be ignoring such crap and will be rooting for Dee to win Celebrity Big Brother and hope that the millions of viewers get to see what I see, one damn fine lady.
I will also being trying to share love and kindess from now on.
[Tweet “Tweet kindness or don’t tweet at all “] is my new motto.