I have two adult sons. Thomas is independent and lives away from home. Nick was diagnosed with Autism at the age of three and is completely dependent on us, his parents. Due to the severity of Nick’s disability we battled to find an appropriate school, therefore took on the challenge of creating our own small Centre. This has enabled us to provide a place of learning and therapy for Nick which he will never age out of.
Parenting two very different children over the last twenty-five years has been a challenging experience, beyond that of regular parenting. It has taught me about hardship, endurance, patience and acceptance. We have had many rocky years; however, have emerged as a strong and supportive family unit.
Being a ‘special needs mum’ narrowed my world and made me feel very isolated. I found it hard to maintain friendships with women who didn’t understand the reality of my life. Who wants to hear all that negative stuff, which outweighed the good times! It was also incredibly hard to watch the growth of Nick’s peers. Even today I have such mixed emotions when I observe other young adults the same age as Nick – I am delighted for them that they have so much to look forward to, yet sad that my precious son is oblivious about his future.
The natural order of life would see me waving my children off to start their own adventures. I hear conversations about the loss experienced by having an empty nest. I understand where the parents are coming from, however, I would dearly love to feel that same loss. Here I am, a woman in my mid-fifties, ready to start a new season in my life, yet am unable to do so because I care for a young man who requires assistance in all aspects of daily living.
I have been aware for many years that it is essential to carve out some ‘me time’ and I am the first to confess that I didn’t find this possible. Mother’s guilt always kicked in! Back in the early days it took a lot of self-discipline to take half an hour for myself and not spend that time frantically researching ways to help my son. If only I had had a ‘Future Me’ to hand out some worthwhile advice.
Future Me would have stated the following;
Remember the young woman who left home at a young age and was always keen for an adventure.
Remember the young woman who was her own person and made her own decisions.
Remember how liberated you used to feel being in control of your own destiny.
Where are you now?
How can you find that person again?
Let’s face it, reality happens, and we learn to let go of our independence and adapt to sharing a life with a partner and then children. However, along the way, I put myself last on the ‘to-do’ list. This carried on for more years than I wish to count.
Eventually Thomas left home for University and I settled into a comfortable routine with Nick. I began to carve out a bit more time for myself, although I was still down low on that ‘to-do’ list. I needed to find an interest that was exclusively for myself, something that would hold my attention and fill the missing element of my life. In truth, I required something meaningful that didn’t involve Nick in any way. An activity that was pure escapism from the world of special needs.
A close friend (also a special needs mum) suggested I attend her photography workshops. That was the beginning of a new journey and one that I continue to be passionate about today. Using my camera and experimenting with different genres has been food for my soul. I can mentally move beyond my present circumstances and really immerse myself in all aspects of photography. The sense of relief is liberating.
When Nick turned twenty, I was at a crossroads in my life and came to the decision that I was going to start putting my own needs before his. For my future mental health, I felt it important to make decisions that benefited me. These decisions range from little ones like leaving him at home with a Carer when we go out for supper; to much larger ones such as creating a group home to accommodate him and other special needs young adults. The pecking order in my house has definitely changed and I am no longer at the bottom of the list. Go me!
I am beginning to answer the Future Me questions. It’s time for some adventures and they are achievable. I remember that young woman and am taking steps to be my own person again. I exercise, meet up with friends, go away with my husband, take trips alone. I am in a good place and feel confident about my future. At the end of the day it is all about having a healthy balance. Although I am not quite there yet, I can see it on the horizon.