parents' experience
Disabled parenting - dual account
Chris and Sonya Grande, who live in Worcestershire, UK, offer a dual account of how they fought for Chris's rights as a disabled father, after he moved from Boston, USA, to the UK to be with Sonya and her four sons.
Chris has spinal muscular atrophy type II. Being disabled left him feeling he would never have a family, but all that changed when he met Sonya and the boys.
Chris's account
We met on the internet in January 2004 and were friends for about eight months. Then Sonya flew over to Boston and that was it. We are now married and settled in Redditch, Worcestershire, UK. I found where I belong, and the dreams I had are now a reality.
We have four children - Josh 14, Tom 11, Elliott nine and Oliver four. Technically, I'm the boys' stepfather but they just call me Dad. They never questioned anything. We all get on really well and have a strong bond. My disability never fazed them. I am just their father.
I enjoy everything about being a parent - going to school parents - evenings, sports days, cooking with the boys and taking them out to the cinema or other places they like to go. I love being called Dad and knowing that I have earned the boys' love and that they are my children. It gives me great pleasure to see them growing into wonderful young men.
I have always been lucky to have supportive parents and now they have gained a daughter-in-law and grandchildren that they thought they would never have. It is other people's attitudes that leave you feeling disabled, but our story shows that they can be overcome.
I went through mainstream schools and got my BA and Masters in psychology and counselling. I needed assistance but I got there. I lived independently in my own apartment, with the support of personal assistants (PAs) until I moved to the UK to live with my wife Sonya and our boys.
I now employ PAs here in the UK through direct payments, and live a fully independent life. My PAs support me in everything including parenting. I am in fact a house husband. Sonya is the worker and college student.
It was a struggle to get the support from social services. My disability was an issue. Social services (adult section) did not want to fund any parenting support. They would not take into consideration my parenting rights and responsibilities, but Sonya pointed out that the Department of Health Fair access to care services guidance clearly covers the parenting role when it refers to &lquot;vital family and other social roles and responsibilities&rquot; (Department of Health 2003).
My wife was my biggest advocate and with her support I got what I needed. Unfortunately, Sonya had to say &lquot;I am busy. I also have things I need to do.&rquot; This is something that went against the grain, but it was the only way to get the direct payments.
If social services feel that your other half or parent will do everything, they will let them. It took Sonya landing in hospital with a serious medical problem for her to realise she could not and should not be expected to do everything herself. She is human after all.
Sonya's account
The boys liked Chris immediately and grew to love and respect him. There have never been any questions about his disability. Oliver has only ever known Chris as Daddy and that's how he sees him.
The children are very well rounded. Josh is excelling in school and is very active. Tom is kind and thoughtful. He has dyspraxia and dyslexia but is very bright and, with Chris's support, he's flourishing. Elliott is the sports mad one, always on the go, and Oliver is the real &lquot;daddy's boy&rquot;.
Chris is a fantastic parent to all of our children. They have grown through Chris's input and nurturing into wonderful young men. Yet when dealing with social services our experience has been very negative.
They questioned how a disabled man can be a &lquot;daddy&rquot;. What vital role does he fulfil? Easy. Chris complements everything I do and vice versa. We are a team. Our roles are slightly reversed from the traditional family model, but our home is built on structure, love and understanding.
Advocating Chris's role as a parent is without a doubt one of the most important issues we have faced, making sure that social services recognise his rights as a human being and his vital role within the family unit.
We really had to fight for Chris's rights as a parent, and to obtain support from adult services. They wanted to pass the book to children and families services and I said &lquot;No. You have to provide the support through a method my husband wishes to use&rquot; and I stuck to my guns.
I ended up collapsing with an abscess and having to be rushed to hospital. The stress of the situation brought it on as it lowered my immune system. I was living on three hours' sleep a night at that time, helping Chris run the house, trying to work and keep everything going.
I had to have an operation. I begged the doctor at the hospital to get me in on the Friday night so I could go home the next morning. Even while on morphine, I was calling the house to make sure Chris was OK. I was going to sign myself out with the drips still attached. I was extremely upset and anxious and I could not walk.
The social worker at the hospital was great and sorted everything out for me. I said I would not let myself get to this state again. I had to be there for my children and my husband, and if I got ill again through stress and overwork, I would be unable to do that. I told social services that I was busy with work and college and that it was physically impossible for me to do everything, and that Chris was as entitled to be independent of me as I was of him.
I started doing an Access to Social Work course to get in front of social services, and to educate myself so I did not feel bullied by them. I have looked up everything I can find and slowly we have made progress. Chris has all his rights recognised now, but it took a lot to get to where we are now. I would love to develop a career helping other disabled parents. Everyone deserves a chance to be a parent. We all need help sometimes, just different types of help and assistance. I have also just found out I have borderline dyslexia and dyspraxia.
Chris and I are exceptionally lucky to have each other and our children. We are a close family and we do everything for each other. We are a team and we love each other and can not imagine a life without each other.
Reference
Department of Health. 2003. Fair access to care services: guidance on eligibility criteria for adult social care. London: Department of Health.