I share an armour which is worn by many Warrior Mothers. We are faced with no other choice but do not protest wearing this shield as it prepares us for the battles and challenges ahead.
16 years ago my life and focus changed when my youngest son Callum was born premature and was in hospital for several months. He had complications and I still remember the moment where time stood still, when our consultant paediatrician entered the room and said to us the words no parent is ready to hear. She explained that it would be unlikely Callum would survive and if he did he would be severely brain damaged. The floor beneath me gave way as I took in the words spoken. We were devastated and I tried to find some source of reference from the books and magazines fleeting through my mind to reassure myself not to worry: the planned journey may have changed but everything would be okay.
Nothing had prepared me for this.
I hoped, I prayed, I watched my baby boy have seizures, be put on a life support machine and to come through it all. As Callum's mother I developed a new mantra: "My beautiful son no matter the outcome, you are perfect to me always. Callum fight my angel and I will fight beside you. Get well, stay with us and your life will still be an incredible adventure we can share together."
I could already see we were going to have a lot of hurdles to overcome regarding choices and opportunities available for Callum in the future. As my son was coming home I found myself going through the ritual of putting on the Warrior Mother armour that many others have to endure, declaring to the world: "I think we are ready, don't treat my baby boy with indifference, as I will break down barriers put up against him and I am determined to shield him from any negativity. Just please world don't give up on my boy".
Challenges included childcare and afterschool provision for disabled children, which is extremely limited if they exist at all. I was a full time, working, single mother, which made the situation even more difficult.
All families with disabled children have huge mountains to climb and we face continuous barriers and endless challenges to clear a path for our disabled child to belong in society, to belong in our communities and to be valued so they can live a full life: enjoy friendships, a social life, a job, go to college, have their dreams and aspirations supported.
In 2003, on a California street, I took a photo of Callum as he leapt of the ground with his feet of the floor huge smile, arms out wide and eyes shining bright. When I saw the photo, I saw how much my son wanted to embrace life, grab every opportunity and live life to the full, this is when I decided to step up and be my son's champion to make it happen.
On my return to England my youngest son's photo was echoed in my thoughts and seemed to propel me forward. Callum became my little inspiration of founding the charity Include Me TOO. Include Me TOO developed the first national charter of rights with and for disabled children and young people. We provide activities and support to disabled children and families - including peer and outreach support - and increase disability awareness and campaigning for inclusion, equality and rights.
The best way I can explain what is like to be a family with a disabled child is that we have been channelled into a different frequency where we appreciate the very simple things. Callum loves the breeze on his face; the feel of sand and grass under his feet; swimming; having baths; music from bangra, the Beatles to classical. He certainly loves his food, huge hugs and above all his family.
I promised Callum the world would become more understanding and accept disabilities. However within our communities there is still an uncaring attitude due to a lack of disability awareness and a lack of real empathy to make real changes. Many disabled children and families have shared with me how negative their community can be towards them and their disabled child. There have been times when I have experienced the ignorance of the community as people stare at Callum, comment how it must be our karma! Furthermore commenting on how hard it must be looking after Callum and giving us pitiful glances.
It is hard for people to understand that our 'normal' is different to theirs: the meticulous preparations we consider for everyday activates like going shopping; days out; the priceless, beautiful moments as Callum jumps up in glee, expressing his contentment through his huge smiles, hugs, clapping hands and becoming excitably vocal. When he is vocal and expressing his joy we smile: it is Callum's way of saying "Hey everybody, I am here".
Underneath the Warrior Mother armour, I am anxious about the future, as Callum's needs will continue to grow, but I try to stay optimistic. I love my son so dearly that I am determined for him to not be invisible. I want him to live a full life of adventures, friendships and I want this for every disabled child, young person and their families.
I have been supporting the rights of disabled people for many years prior to becoming a parent to my youngest son. Sadly in my experience many people do not get involved unless a particular issue affects them. The community needs to talk about disability and get more involved: increasing friendships to disabled peers and their families; increasing choice and opportunities to disabled people; and getting proactive with us to create an inclusive disability rights respecting and disability friendly society.
I look forward to the day I can take off the armour and no longer have to be Warrior Mother, knowing that the world is kinder, safer and inclusive for my disabled son and his peers, knowing that their individual abilities and aspirations can be supported not as 'additional' but as 'the norm'.
Parmi Dheensa is the Founder and Executive Director of Include Me TOO which supports Black Asian & Ethnic Minority (BAME) disabled children & families. Parmi has been shortlisted in the Social & Humanitarian category for this year's Asian Women of Achievement Award for her work with Include Me TOO.
More information on the charity can be found at www.includemetoo.org.uk and @includemetoo