I have met so many single mothers of disabled children from all community backgrounds, religions, cultures. We have one thing in common trying to do the best for our children. I salute them all and reach my hand out to them in admiration and friendship.
I have also met many parents who are together and have a disabled child and they can often feel alone in their relationships and feel as they too are a single parent juggling the various appointments they attend. Meeting so many professionals, trying to learn new concepts and approaches to meet their child’s individual and unique needs, a range of assessments and tests the list can feel endless for most of us.
When my marriage ended it felt so surreal. Never in my wildest dreams did I ever think I would find myself as a single mother of a two year old and 7 month old (who had a range of additional needs). I remember moving into my own house for the first time getting my first mortgage, the removal men had dropped of the furniture and I sat in our new lounge on my sofa with my mother who had come over to help (she had asked me to move in with her but I said I had to start this chapter with my children in a home of our own). However that afternoon sitting next to my mother the enormity of the huge life change was sinking in ‘Oh what have I done, can I really do this and take on this responsibility on my own, the house, the bills, drop children off at child minders, after school clubs and work full time?’ I asked her. She then said remember whose daughter you are. My mother raised four children on her own when my father passed away. I was the eldest aged 13 years with siblings aged 12 years 10 years and 6 years. My mother did not speak English, had never paid a bill as my father always did. She raised her four children the best she could I can never thank her enough for all she did for us. Surely I could do this, I told myself, as my mother had many barriers whilst I had a good English education, a career to still continue with and family and friends who lived nearby.
We had started a new chapter in our life full of possibilities. In 2003 we went to America to visit other members of the family, whilst there 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. At the time I did not realise that he all the time was and is my Champion along with his wonderful older brother, inspiring me, teaching me and I am so grateful to be their mother.
When I returned to England my youngest son, full of energy and life, seemed to propel me forward and was the inspiration of the charity I founded Include Me TOO.
I 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 but that did not mean we would not find solutions and overcome them.
I already had been along two very different journeys with my two children. I had no difficulty accessing both full-time childcare and eventually after-school care for my eldest son Cairen. Childcare meant I could continue working full time and support my family. I knew Cairen was in a safe secure environment amongst his peers, benefiting from social activities, gaining new skills and confidence.
I did not hesitate in accessing childcare for my youngest son Callum as I believed this would have a positive impact on him too, meeting other children and enjoying a range of activities..
I never had difficulty in accessing childcare until Callum reached two years old and his delayed development was more apparent as were his additional needs. He was not able to interact with his peers and with younger children his nursery placement was judged as unsuitable by staff and other professionals involved. My child’s ‘special needs’ meant it was becoming more obvious he would need one to one support in a suitable nursery environment. However I found nurseries did not have the extra staff to commit to this level of support which Callum would need.
I had begun a journey, which would lead me to experience frustration, experience discriminative practices, experience organisations and individuals sheer ignorance regarding disabilities.
The reality and choice I faced were the additional cost to cover a support worker if I wished to have him access childcare in a nursery.
Over school holidays the average cost for a child 5 days a week would be £100 however for a Callum to support his additional needs 5 days a week would be £100 plus an average of £250 per week additional cost for the one to one support. There was no funding to cover this and as a parent I was expected to pay this.
(At this point I wish to share with you 15 years on there is still extremely limited childcare which provides quality and affordability for disabled children and their families. Currently there is a government enquiry into this).
Even though the journey so far has had its’ fair share of trials and tribulations, I was aware that there would be more to come. My youngest son Callum, inevitably, would face many more challenges and barriers due to his additional needs
Callum is affectionate and fun. He expresses himself through his facial and body language also vocalising. He laughs, jumps up and down and claps his hands when he is happy or excited which is most of the time! All his personal care needs have to be supported, this includes feeding, drinking, washing, cleaning teeth, changing pads etc…
Due to having Cerebral Visual Impairment, it means he can’t always understand the things he wants to see. Callum can walk short distances and has a wheelchair but we are always encouraging him to walk as much as he can.
When I looked into my little star Callum’s eyes I know that there’s no differences between him and another child. He offers the same warmth, the same love, requires the same comforting, the same reassurance, shares in the same laughter and play, wants to learn and embrace the same life. My son is the same as any other child, but as with so many other disabled children will experience being denied the same opportunities because of his ‘additional needs’. How could this be right?
I had to get actively involved in the process to ensure all disabled children and young people’s RIGHTS were recognised and respected.
Callum inspired me to reach out to other families with disabled children to make sure they get the best out of life to. I realised I could not do this my own and after meeting with other families with disabled children and colleagues who had disabled children 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 delivered speeches about disability to increase awareness and met parents and carers of disabled children at local Gurdwara’s, Mandir’s, Mosques and African and Caribbean churches. All the time I shared Callum’s Story citing ‘Treat other the way you would wish to be treated’ 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 more and more families carried on contacting us and services providers wanted our help to. This is when I decided to resign from my job as I needed to do more. Callum gave me the strength and courage to make that huge decision as how can we change the process unless we actively get involved. Include Me TOO soon became a national charity as more and more families got involved as we supported disabled children and young people to have a voice too.
We supported disabled children and young people to develop the 10 Standards of the National Include Me TOO Charter of Rights. Over 60 national organisations including the Prime Minister and government departments endorsed and signed up to the charter.
We arranged for disabled children and young people to go to Number 10 Downing Street and talk directly to the Prime Minister’s advisors about their charter. My eldest son Cairen attended with his brother’s disabled peers and was representing other siblings of disabled children on the day. I was so proud of him, I knew how proud Callum was of him too. Callum quietly smiling knowing his brother was supporting him to make sure his mark was being left in this world alongside his peers.
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.
My mother tells me so many times how proud she is of Callum, Cairen and me, our family and friends tell us they think we are amazing. I can tell you we are no more amazing then so many of the other families and disabled children we have had the pleasure of meeting, supporting, befriending and laughing with. There are so many stories, aspirations and incredible journeys to be shared and celebrated from each of them.
I am often asked how I cope and like many families my focus and energy was to support my children to ensure their childhood was full of precious fun memories building a strong foundation.
It was essential from the outset to ensure Callum would be surrounded by positivity and every moment of his precious life appreciated as blessings. It does get hard that is true, what gives me strength is the moments that take my breath away as I see my children are happy.
Callum’s achievements you see are not small they are remarkable just like him. As he leads me on his life journey I continue to hold his hand I will certainly never let go and will forever keep Callum’s Promise! A life full of Love, Friendships and Adventures.
Moment of Inspiration my beautiful son Callum.
Callum attended the House of Commons in 2007 with other disabled children and families and he met many Ministers including Sir Ming Campbell the Liberal Democrat leader at the time. (Aww I can’t believe how time passes by and I remember everyone must have heard Callum he was happy and very vocal ensuring everyone knew that he and his friends where in the building!)
2009 Cairen at the age of 12 years attended No 10 with several of our disabled children and young people to discuss their rights. Cairen representing Callum, his little brother determined the rights of all disabled children are recognised.