Dad dot info
DAD.info form. Ask questions, get answers
DAD.info | Fatherhood | Being Dad | Being a Dad of a child with disabilities

Being a Dad of a child with disabilities

Deanb

Deanb

MR ORANGE’S STORY

Mr Orange shares his experience of being a full time carer for his disabled daughter:

As a full time carer, I have spent the last two years with our disabled girl, M. In addition to her wonderful smile she had epilepsy, visual impairment and developmental delays. She would have been three this year.

Rather than feeling stuck at home, I searched for a special needs coffee morning within 10 miles. When I first started I was struck by how often I was the only man there, although over the weeks two more joined in. This helped me enjoy the time more because we talk differently and on different subjects than ladies. I was thus able to talk beyond the weather / our child etc and chat through difficulties, e.g. where to go to sort out a specific problem (education, getting syringes, benefits).

We benefited from Team Around the Child meetings to bring more than a dozen professionals together – from PCT, teachers, hospice and key-worker – to clarify the picture they had and thus coordinate any actions coming up for our little one.

Over the weeks M’s key-worker regularly assisted and chased things for us, many times going above and beyond what was expected of her (challenging petty decisions, promoting M’s best interest above bureaucracy). There were times when different council departments were unable to act together quickly or with the same clarity of purpose which was hugely frustrating.

At home I found it really helpful to treat visiting professionals as ‘family’ because they saw us as we were most weeks (un-vacuumed, toys and equipment everywhere, in the middle of nappy changes, or cry-screaming from epilepsy).

Through a strong working relationship I was able to accept advice/direction/correction without taking it personally – this meant that I got a ‘better service’ as mutual trust grew – but the professional had to take the risk of being direct when I didn’t take gentle hints!

Some days I had the distorted view that my wife was letting me get on with our little one and the chores. At times it was hard working as a ‘team’, each with a different approach to caring at home and when there were periods of one person needing ‘space’ while the other held the fort. I found myself shunning one chore until eventually she took it up.

In the midst of the health roller-coaster it was hard to push through obstacles such as fighting the local authority to get our preferred nursery placement. Although after a few days of our little girl being distressed by seizures, education some months off seemed irrelevant. But to take no action would mean getting stuck with the authority’s ‘good enough’ nursery – it would have helped if someone could have drafted a decent business case to act as the voice of the child at the education panel. At that time of stress it was exhausting finding the inner resources to express our hopes and concerns in a professional way.

Coming to terms with a life limiting condition was something I found hard. It had no time-scale on it but the idea felt very final. I found explaining health changes to each professional between their visits was double edged: mostly positive to talk through my concerns and report observations; but occasionally seeming to make the conditions bigger than the little girl I knew M to be. I valued the genuine care M’s key-worker had for her, able to see the nuances of new skills or variation in a condition.

Sadly M died in Summer 2009 a few days after going to hospital. We are left with new skills and rich memories. I’m grateful to have faced some of my prejudices and fears around disabilities. I greatly value the trust M gave so generously. It’s been a privilege to have spent time discovering how to interact and let M lead me in her learning.

If you would like to share your own experience of ‘Being Dad’ or talk to other dads, remember the Dad Info Forum is there for you!

Their mission is to: work in partnership with disabled children, their families and professionals, to ensure that all families throughout the UK have access to high quality care co-ordination or key worker services.

Find our more: http://www.ccnuk.org.uk/

 

Updated: Oct 2017

Related entries

The Cringiest Dad Jokes

The Cringiest Dad Jokes

Dads are famous for three things; DIY, Dancing and Dad Jokes. We might not be great at any of them, but we wear our Dad badges with pride. Today is National Tell a Joke Day so here are a few of the Dad Info team's best/worst Dad jokes - share yours with us!...

It’s Fathers Day – Let’s be Kind

It’s Fathers Day – Let’s be Kind

On Father’s Day we are feeling a little more reflective than usual. In collaboration with Parent Ping, we asked 1500 people what qualities they valued most in a Dad. 51% of those who responded said the most important quality in a Dad was kindness.  Patience and...

Latest entries

ASK DEBBIE – I HAVEN’T SEEN MY CHILD FOR FIVE YEARS

ASK DEBBIE – I HAVEN’T SEEN MY CHILD FOR FIVE YEARS

Dads, do you struggle sometimes? Who do you reach out to for help? Debbie Pattison, a qualified counsellor at Fegans can answer your questions. Send them in to Ask Debbie at info@dad.info and if she can she will answer. Today’s question is from a hurt dad that hasn't...

Childcare: what are the options?

Childcare: what are the options?

Modern parenthood is about striking a balance between caring for your children and earning a crust. Many families need childcare options to balance the juggle. If you don't know your nannies from your au pairs, read our guide to childcare to help you decide...

31 percent of parents don’t read to their children

31 percent of parents don’t read to their children

Are you one of the over 60% of parents who doesn't read newspapers or magazines to their kids We all know that reading is essential for our children’s development. Despite this, a third (31 percent) of us parents do not read with our children and 63% never read...

Pin It on Pinterest