Parenting with a disability has its challenges as well as its rewards. I have been a parent for 17 years. The last five years have been the hardest as my mobility levels have declined. Seven years ago, I was diagnosed with a neuromuscular disorder.
The manifestations of this mainly occur in my lower body. This makes walking difficult, days climbing stairs are gone. I use full leg bracing, a stick and a wheelchair to get about. Fatigue and pain are a constant in my life and something I’m learning to live with.
Does this mean I can’t parent? No, of course not. It does mean I face certain challenges an able-bodied person wouldn’t have to, but I believe problems are challenges to be overcome. Let's face it, parenting is challenging at the best of times but we all have to find ways to adapt and overcome these in order to be good enough parents.
Good enough isn’t about settling for second best, it’s about providing a loving and stable environment for a child to develop and grow by being the best parent we can be. I’m fortunate in that my condition, although incurable, is a slow burner. Yes it will get worse as I get older but there are plenty of other parents with various disabilities that pose significant challenges to them that I don’t have.
I’m married and have a very supportive wife. There will be parents who are raising children on their own whilst having to manage their own significant needs. I don’t have this to deal with. I do find it difficult to access areas other parents can, such as beaches, outdoor playgrounds, swimming pools, anywhere with steps, any event that requires standing for more then a few minutes. I could go on but try not to dwell on what I can’t do and look at what I can do.
In order to achieve a level playing field I’ve had to adapt. There are many mobility adaptations out there to enable those of us with physical needs to access areas otherwise difficult. I have an off-road scooter called a Tramper for taking the dog out and my daughter is of an age where she can stand on the footplate. I also use leg-braces when standing so have that option should I need it.
I use crutches that fold, a flask to carry drink, I choose areas that are child friendly with decent accessible facilities if my daughter needs the toilet, as she still requires help. I do feel there should be more adaptations for buggies to attach to chairs. There wasn’t one for either of my daughters and this proved tough pushing and steering.
I enjoy the simpler pleasures. Reading to my daughter, indoor play where the activity is at table height and being out on the scooter with the dog. I have had to adjust to things I can no longer do: cycle, play football, trampolining. I did take my eldest to wheelchair basketball and she loved it. The beauty of this sport is that it’s for able-bodied and disabled people.
Adapt and overcome. I appreciate this is a very brief account of a small part of my experience. Money is an issue. If you have money then adaptations are out there. In these times of public cuts money is very tight. People with a disability are struggling to make ends meet. Funding equipment costs a lot of money. The more complex the need, the higher the price. The average power chair is £10,000, wheelchair £5,000, a Tramper costs in the region of £4,000.
Life isn’t fair and even more so when you are disabled. As parents we prioritise the needs of the children and that often leads to loss of independence. This account is of my own experience. If you’re reading this and struggling then please seek help of local support groups for parents in your area. Speak with a charity that covers your condition as they may have support groups in your area too.
The important message is you’re not alone. You can only do your best.
Ian's début crime novel, Rubicon