Welcome to motherhood where you are not given a handbook with frequently asked questions in the back such as “why does my son decide to pee a fountain the second I remove his nappy?”
“why does my child suddenly cry for the toys I am giving to the charity shop even though they’ve not been touched for 2 years?”
“why can’t my child see their clothes when they are right in front of them?” and
“why do I constantly feel so much bloody guilt?”
We feel guilty about everything – if we work hard but have to put our children in day care, if we stay at home with the children so can’t contribute financially as much as we’d like, if we serve ready made oven cooked lasagna instead of home-made (ok I don’t feel too much guilt about that one. It tastes just as good!) The list is endless but for the purpose of today’s blog I want to share with you the guilt I feel when I spend time with just one of my boys.
Read the moment that life changed forever to find out more about Harrys craniofacial syndrome but as well as that he has significant learning disability, is autistic and non verbal. I adore him and wouldn’t change him for the world but undoubtedly Harrys autism has an impact on my family time.
If I am out with the boys my eyes and ears are on Harry constantly, even when I should be listening to something of vital importance to Oliver – like how many more dragon eggs he needs until the next level on his game. Sometimes he will quiz me to check I have understood. Of course, I get all of his questions wrong, because my focus is on reading Harry for any potential signs of a meltdown and ensuring he is safe at all times. Oliver is disappointed. I am full of self-reproach for not paying better attention and yet all the while my focus is still Harry. Its as natural to me as breathing and its not something I can switch off. Without me reading Harry at all times we could be faced with a melt down which halts all of our plans at that moment. Without being aware of his every move he could hurt himself (he is visually and hearing impaired) or wander off with a stranger. I am conscious of his feelings and behaviour at all times but I am also acutely aware that I have another child who needs me just as much. Oliver struggles massively with his anxiety as I have blogged about in the past (read about it here in a siblings curse) and I know he needs my focus and full attention at times too. But short of splitting myself down the middle, what can I do? The only answer is to spend some one to one time with each boy.
This is brilliant because it means that I get to focus on each boy entirely.
On the days I am with Harry we go bouncing at the local trampolining park, we visit the miniature railway he enjoys, we go swimming (well, just on the slide 523 times) or we will do some arts and crafts that I hope will be sensory fun for him.
When it’s just me and Oliver we will go to the cinema, to the gym, go out for food and chat the day away, visit Manchester on the train for shopping and sushi, or I just watch Oliver play his game and he educates me on Pokémon or dragon balls or whatever his latest obsession with. It’s great and its necessary that each boy has my full attention because the alternative is deflating for them (well Oliver, Harry is oblivious) and exhausting for me.
But here’s the thing. Even though I am giving my boys exactly what they need, I still feel incredibly guilty.
When I have time with Harry I am able to relax and immerse myself in paying full attention to how and where he is without stressing about Oliver. I kiss and cuddle him more to make him squeal with delight knowing that Oliver won’t be feeling pushed out (he’s waaaay passed the public displays of affection now) If he does have a meltdown I can deal with it without any distractions and panicking about triggering Oliver’s anxiety. But Harry is non-verbal. We talk at each other rather than with each other. He repeats a lot of what I say or calls me random names like a guinea pig or suitcase (we laugh but its weird right?! No, I have no idea why either – I get my tash treaded so it’s not the fur). Time with Harry is wonderful but it can also be lonely. The times when my ex husband takes Oliver away are long weeks without my side kick. I miss him. And then I feel guilty because I worry that this means I feel that Harry isn’t enough for me. That he doesn’t fulfil me as a mother. What a wicked thought. I am consumed by Harry in the most intense and wonderful way and his love has changed me in so many incredible ways yet I miss Oliver when it’s just us. Not all the time, but enough to make me beat myself up.
On the days when it’s just me and Oliver I can link my son as we walk through the shops and carry my shopping bags instead of carrying the bags and holding Harrys hand / wrist at all times. We can walk back to somewhere we have passed without Harry having a steaming melt down because he simply doesn’t do reverse. I can listen fully to Oliver as he tells me the things that matter to him right then. I am relaxed and happy. And yet, I feel dreadful for that same very reason – I feel awful to be enjoying time away from the constant surveillance that is part and parcel of having a child with a disability. I feel almost like I am betraying my responsibility by enjoying the ‘freedom’ of a day without autism. I’ve mentioned before some of the ways that living with autism can be hard and enjoying a moment in time without it is another one. It also makes me sad to be doing things with Oliver that Harry may never enjoy and that there are things we can’t enjoy together as a three but as my partner Andrew reminded me recently without realising, that’s not autism life, that’s family life.
His daughter B is 12 and his son H is 10. As well as being different ages and sexes they are both obviously into very different things. Andrew takes B shopping and feels sorry for H who trails behind them bored. When he’s watching (i.e. feigning interest) football with H he feels that he’s neglecting B as she plays in the garden. After almost seven years together, he’s only told me this very recently and it was a real eye opener for me.
It’s not just me! I’m not the only parent to enjoy and yet struggle with one to one time. I am normal (whatever that means!) and I’m not as wicked as I sometimes convince myself I am (*Puts the hair shirt and whip away*)
I will continue to enjoy the one to one time I have with my boys and no doubt I’ll still have my struggles with it but knowing I’m not alone in that helps loads. There’s an old saying that there’s safety in numbers, I’m changing it to sanity in numbers! There’s reassurance in knowing you’re not the only one who is winging their way through parenthood and writing their own handbook as they go!