& A Mother’s Promise
My son Callum was born at just 28 weeks in May 1999. He was in the premature unit for several months.
Callum came home in August 1999, but was still in and out of hospital. He would have “blue episodes”, stop breathing as his lungs where still underdeveloped. This could happen whilst having a bath, feeding or anything. He seemed to be upset all the time, as though he was in pain. Even so, the hospital would do checks, say his observations regarding the oxygen in his blood stream were good and send us home.
On October 1st 1999, I woke to see my son not moving. I quickly scooped him up in my arms. He was so cold and stiff. I could just about hear what felt like his last breath. We put him on the bed and his dad worked to breathe in his mouth. I grabbed the phone and called 999. Someone talked us through how to administer mouth-to-mouth.
The ambulance arrived. I held Callum in my arms, praying all the way to the hospital. At the hospital, doctors and nurses surrounded us. It was a blur.
I remember Callum in this huge room full of machines monitoring his every breath. Callum’s condition was deteriorating and his brain tried to recover from the shock. We felt so helpless as we witnessed his first seizure. There was nothing I could do to stop seizure after seizure, violently shake his little body, my 5 month old baby boy. Time stopped for us. Our consultant paediatrician entered the room and said the words no parent is ready to hear. She told us that, if in the unlikely case that Callum survived, he would be severely brain damaged. The floor gave way. We were devastated.
Callum was put on a life support machine. He fought hard and pulled through. I realised our family journey was going to be very different to what we had planned, as we met the many professionals who would support Callum.
Callum has severe learning difficulties, dyspraxia, vision impairment, epilepsy; he is non-verbal and will require support with his personal care needs for the rest of his life. Callum is my son, my miracle, my inspiration.
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.
When I returned to England my youngest son inspired me to set up the charity Include Me TOO.
I already recognised opportunities and choices would be limited for him, something had to change. I accepted there would be challenges and barriers ahead for us due to his additional needs. We already had experienced so many barriers.
I met with other families, with disabled children and we organised community outreach events. My aim was even if we helped one family that was still one family more than when we started. We delivered information stalls presentations to increase disability awareness in the community, reached out and met parents and carers of disabled children at local Gurdwaras, Mandirs, Mosques, African and Caribbean churches. So many families wanted to share their experiences with us and they wanted support, information and better services.
We developed our first family support network and increasingly more families continued to contact us, similarly services providers wanted our help to. This is when I decided to resign from my job as I felt I needed to do more. Being a experienced trainer and consultant in the field of disability, equality and inclusion I was able to commit more time to Include Me TOO as more and more families got involved and soon we became a national charity.
Our communities need support to increase understanding and awareness regarding disabilities. To support for our local families, positive language for disability and action needs to be taken eradicating negative stereotypes and ignorance regarding disabilities. The human rights principals and equality, diversity and inclusion are the base of Include Me TOO. By working together as Black, Asian and Ethnic Minority families with disabled children we have a stronger voice, a real chance to make a difference and achieve positive change.
You may have heard the quote ‘Meeting one autistic child is just one autistic child you have met as they are so different’. The same truth is meet one disabled child or family is just one of so many. We all have different views, experiences of our disabled child, our life as a family and Include Me TOO continue to support families to share their stories, increase awareness and create solutions.
How can I explain what is like to be a family with a disabled child for us? For my family it is like we have been channeled into a different frequency where you appreciate the very simple things. Callum loves the breeze on his face; the feel of sand and grass under his feet; swimming; a range of music. He certainly loves his food, huge hugs and cuddles and above all his family.
I am humbled and honoured to call him my son. I am his mother, his advocate, his voice as he holds my hand and guides me on his life journey. I am in awe of my angel, his mild loving patient nature, the love and beautiful smiles he blesses my life with, the direction he has led my life since he jumped up high to say I want to garb and enjoy my life on a sunny day in California! He is my inspiration, my teacher and I am his voice, in his journey ahead..
Callum’s achievements you see are not small they are remarkable just like him. Please visit www,includemetoo.org.uk and if you wish to know more abot Callum’s journey please see Callumspromise.com