Why It's Hard to Let My Son With a Disability Grow Up

This week I was explaining to one of the classes I teach what it means to feel “emotional conflicted.”‘ Today, as I packed my son’s suitcase for his week-long overnight trip with school, I became the embodiment of that description.

When I asked Harry if he was excited to go away with the staff and friends he adores, he told me “no” several times and I just wanted to wrap my arms around him and keep him with me. But that reaction, as natural as it is, is not always helpful. With all children, but particularly those with disabilities, we as parents need to help them spread their wings and grow. We cheer them when they succeed and we catch them when they fall, and all of that is part of the life they carve for themselves. But Harry’s life is full of fears for me as his mum. His vulnerability is immense, his capacity to manage his own life independently is limited but this doesn’t mean that he can’t and shouldn’t live a life full of adventure and challenges. I am the first one to help him see the world, but this is where I come unstuck. It’s always me. I am always at his side. I don’t actually think he always needs me there, but I need to be.

Harry’s dad is fantastic at pushing him to be more independent. I know this is where I falter. My partner, Andrew, encourages Harry to walk at our side when we are out and about. Harry’s hand creeps for mine and I feel so relieved to feel the warmth and comfort of his hand in mine, but Andrew encourages Harry to walk alone, to be the young man he is and not the little boy I see too often, to give him some autonomy and to reduce his dependency on me. I get it, don’t get me wrong, and its 100 percent the right thing to do, but wow, I hate it.

At one time I thought that having a baby with Goldenhar syndrome and autism was my biggest challenge, but I was wrong. Letting my boy grow up is way harder than I ever expected it would be and as I kissed him goodbye at his dad’s today before his overnight trip I felt a sad ache.You see, I am so excited about his adventure, but I worry what may happen while he is apart from me and taking part in all sorts of daring (and brilliant) activities. I worry daily if he will be OK with the uneven floor surfaces, with the different routines, without his family.

But in truth, I am looking forward to my sleep being undisturbed for a week as Harry’s internal body clock is is something he can’t understand or explain. But I feel guilty that his absence generates even the briefest moment of relief. I feel like I am betraying him.

I am very much looking forward to spending time with Oliver without the distractions of Harry interrupting almost every conversation we have. Oliver needs this time with me and with his dad and he will benefit so much from that undivided attention and rest. But I feel bad that I am enjoying time without Harry as if he was an inconvenience or problem in some way, which he never is. Then, as I watch the clock for Harry’s return, I feel awful that I struggle to immerse myself in time with my other son who needs me just as much as Harry does.

On Tuesday, I will celebrate my 40th birthday with my family, which I am really looking forward to, but I will feel Harry’s absence so keenly. There are so many things I do on autopilot for Harry, without him here I feel somewhat redundant. It’s so weird to not have someone who needs you consistently, and now I realise that the way of life I had once dreaded has become the fabric of who I am and I would never ever change it.

It’s only been a few hours since I  dropped the boys off with their dad and yet I am already looking forward to Saturday when we are all reunited. Until then, I will enjoy my time with Oliver, catch up on some much needed sleep, drink in the peace and unwanted release from my usual intense responsibilities, have fun celebrating my birthday through the week with family and friends, and use it as the perfect excuse to drink gin and eat cheese. My toast will be: “To the love that teaches us who we are and gives us the strength to be the best versions of ourselves.” Cheers.