The Other People in Our Lives

For the majority of parents of a child with additional needs, I imagine that child will be the centre of their world. I am not suggesting for one moment that they love their other children, partners or families any less but out of necessity they may need to spend more time caring for and organising the life of the child with additional needs and who as a consequence is likely to be more dependent on them. I can say this from personal experience as this is how it was for me whilst knowing beyond doubt that I love both my sons equally.

What each of my sons needed from me was often very different.

I have two gorgeous boys. My eldest is now 28yrs old and has complex needs. He is and always will be 100% dependent on his family and carers to fulfil all of his needs. He is non-verbal and has a severe learning disability which makes him vulnerable and he requires others to advocate for him.

My younger son Harry is fast approaching his^25th birthday and could not be more different. He has always had a lot to say for himself, he is outspoken and confident in expressing his views. He is far better educated than I am, he is a hard worker and high achiever. The irony is not lost on me that whilst he travels the world alone, his elder brother cannot step outside the front door without a responsible adult with him.

As a parent, I would have wanted to share my time equally between my children.

For some of us that is not our reality. For practical reasons James needed me more. He needed me to feed him when his little brother was able to do this for himself. James needed to be bathed and dressed long after his brother had mastered these life skills. There are many things James needs to have done for him every day that his brother didn’t need help with long term. James could never walk to school alone, or make his own lunch or wash his clothes or make a doctor’s appointment. The list goes on.

It can be hard for siblings who can’t have as much of us as we’d like to be able to give. What I tried my hardest to do was spend quality time with Harry when it was possible even though I often had other jobs to catch up on or really just wanted to sleep. In latter years when James was in respite my husband and I made sure we took Harry on trips out, played games at home and generally just made the most of spending time together.

Exhaustion and stress were a significant factor in my life for many years.

I know this impacted on my other relationships on both a practical and emotional level. I’m sure there were many times when I was so absorbed in the complexities of my life that I failed to give others what they needed from me.

But life moves on and now whether its watching Harry graduate with first class honours or video calling him from somewhere abroad and far away or watching James complete a six-piece puzzle alone or putting his slippers on unassisted, my boys give me so much joy and I am equally proud of them both.