Richard is dad and carer to Abbie. Born in March 2010 she was diagnosed aged 6 months with a neurological condition called Holoprosencephaly (HPE), due to abnormal brain development. She has cerebral palsy, epilepsy and global developmental delay. Abbie was also born with a severe cleft lip and palate, which has now been repaired.
Richard and his wife Lynne have two other daughters, Amy and Holly who are now 10 and 8. The family’s challenge began before Abbie’s birth, with Richard being made redundant on Christmas Eve 2009.
Following his redundancy, Richard started his own business with two colleagues. This in itself was a challenge as it was during the worst recession in the construction industry for sixty years, but when Abbie was diagnosed Lynne had to give up work to become a full-time carer.
Pressures of caring for a disabled child
“Starting a new business and having a new addition to the family , who is disabled, has caused pressures . Trying to spread myself fairly between work and family is difficult, not least because of all the hospital appointments” Richard explains.
“However, being self-employed does give a certain flexibility and is helpful for juggling working and caring. I am very lucky to have work colleagues who share an attitude to life of ‘family first, work second’.”
Strengthening family relationships
For Richard, one of the wonders of caring for a disabled child comes in the positivity he sees in Lynne.
“Having Abbie has brought Lynne a new sense of strength and I never cease to be amazed at her ability to fight for Abbie’s cause and push her to the limit of her abilities, whilst still being an amazing mum to our other two girls.”
In fact, he believes his relationship with Lynne has become stronger due to their circumstances.
“Although we undoubtedly don’t have as much time for each other, the time we get as a couple is even more precious than before. We are there to help each other through the tough times and hopefully we don’t seem to be both down at the same times, which means we manage to get by.
“Having a child with disabilities is both a challenge and a gift. The dark days can be VERY dark, but the good days make it all worthwhile.
“Any new addition to a family will create time and financial pressures, but with a disabled child this is multiplied, and one of the most important things I need to remember is to make time for our other two daughters, so that they never grow up resenting the time we have to spend with Abbie.”
Richard and Lynne get a lot of support from Lynne’s parents, which gives them precious time together as a couple, even if only for brief moments. But overall, he feels that mum carers have better support networks than dad carers.
“This could be because women are better at talking and sharing generally, and therefore are able to build these bonds. I would like to see more events for dads and kids at weekends to allow me to be more involved, but I’m also aware that most men are fairly introverted when it comes to group events, so anything available would preferably be kept as informal as possible.”