Blog#5: Grandma

We live in what is fashionably called ‘a multi-generational household’. What it means in real terms is that JJ, his dad and I share a house with my mum. We’ve all lived together since 2015 when JJ was four years old. Here’s a bit of background.

We made the decision to sell both our houses and live together for financial reasons. I’m sure many parents reading will know the experience of not much being left in the bank at the end of the month, once the mortgage and bills have been paid. JJ’s dad and I were in a really tight spot and couldn’t see it getting any better. Mum and I had always been close and, as I’m an only child, when she offered us a way out of the situation we jumped at the chance. Mum had been living alone in the family home since my dad died in 2006. She was perfectly capable of taking care of herself, and with no health concerns, led quite a calm a stress-free life. She had been a huge help since JJ was born. When I had bits and bobs of freelance work to do, she looked after him and he loved being with Grandma. When JJ was at pre-school, and I went back to work a couple of days a week, she had him in the afternoons. Basically, we couldn’t do without her. She would also feed us all a couple of nights a week, and did most of our laundry. What an absolute hero.

As JJ got older, she would take him for afternoons at our local pottery cafe, or on the bus into town for a potter around the toy shop and a McDonald’s lunch. They used to enjoy feeding the ducks by the river, walking down to the quay for scampi and chips, and probably an ice cream too. It was wonderful to know that they had this relationship and that I could have a break during the day every now and again.

When we started to suspect JJ was developing differently and he quite quickly became an outwardly anxious seven year old, trips out with Grandma happened less frequently. As his separation anxiety increased week by week, he started to refuse to want to spend time out of the house with Grandma (or his dad, actually) causing her quite a bit of sadness. My mum could see that stress in the house was escalating with JJ’s increasingly physical meltdowns and anxiety, and she was unable to help. Over the next couple of years, JJ retreated from her more and more and at the moment, he rarely even acknowledges her presence in the house. Sometimes if she asks him a question, he will look at me and answer.

Although she doesn’t say anything, this must be crushing for her. The once-happy grandson she used to have fun with acts as though she wasn’t even there. I think I know why he is like this with her, and with his dad to a certain extent. It’s the DEMAND of the relationship, the demand of being a son and grandson and all that entails. Of course, I can’t ever be 100% sure as JJ does not talk about his feelings at all. But since he started to make ME the focus of his life, since he needed ME to be with him all the time, the need for other people fell away.

I also think that I am partly to blame. When JJ was younger and we were like most other parents who thought they had a neurotypical child, we used to place a lot of importance on politeness and manners. This was especially important to me. Growing up, my mum and dad were older than many of my friends’ parents, and I sometimes noticed how polite both they and I were in comparison to others. I carried this thinking through to JJ and was a stickler for please and thank you which I thought would set him in good stead for life. Always being able to charm people with a smile, good eye contact and a sincere compliment had long been staple behaviour of mine. People respected this and so it reaped rewards. So I always made a point with JJ of insisting he look his Grandma in the eye, and always saying please and thank you.

Of course, knowing what I know now I was asking him to do something he would have found incredibly uncomfortable. And insisting on eye contact – it makes me shudder to think of myself doing that. And looking back, all of these behavioural standards – manners – placed on him by me and by his first school, were just demands in disguise. They now have the potential to be as anxiety-inducing as something far more serious, such as leaving me to go to school. Because to JJ, with his extreme demand avoidance, one demand feels just as frightening as another. A demand is a demand.

Once we started to adopt a low-demand style of parenting, and saw improvement in his general level of anxiety, JJ’s dad and I changed our perception of what was important and what was not. We started to ask ourselves the question ‘is it really worth it?’ before making a point of something, which has since become the cornerstone of our parenting. There have been times over the past couple of years that we have both questioned this choice: he really should say please and thank you, people will think he’s rude! Are we just letting him get away with bad behaviour? Is it good for him to have his ‘own way’ all the time? What about when he’s older, he’ll have to learn to live in the real world? These are questions which used to trouble us a huge amount, and still do occasionally. But I now think that we are on the right track, and JJ will be ok. Let me address these questions:

Should he be made to say please and thank you?

This is obviously a very British expectation. As a society we can be quite judgmental of people who we deem rude. It’s just a fact. We make assumptions about someone’s upbringing and their character based on the utterance of a few words, which may be said completely insincerely. All I know is that to try and make JJ state these arbitrary words is painful for him. He knows they are expected and that demand means he cannot say them. I would rather have my child less anxious and occasionally thought of as rude by strangers.

Are we letting him get away with bad behviour, and what is this teaching him?

Firstly, I don’t believe there is such a thing as ‘bad behaviour’. All behaviour is a form of communication. If JJ is exhibiting supposedly undesirable behaviour, why is that? What need isn’t being met? Why is he feeling anxious? His outward behaviour is a mirror to what he is thinking and feeling inside. That’s my priority – to work out WHY. All I am teaching him is that he is not going to be punished for being upset about something he has no control over.

Is it good for him to have his own way all the time? What about when he’s older, he’ll have to learn to live in the real world?

JJ needs to control his environment. This is not his fault. He is autistic and PDA and also very young. If he does not remain in control as much as possible it causes him huge amounts of emotional pain, the like of which I as a neurotypical cannot fathom. It’s my job as a parent to protect him and make his environment a safe place in which he can function. In terms of the ‘real world’, there are many autistic/PDA adults who have carved a place for themselves. It may have taken time, and it may have been a painful journey as the world can be a very inhospitable place, but they have got there. Besides, this can be an ableist and inhospitable world for the neurodiverse and part of me thinks JJ, with his incredible focus and remarkable stubbornness, might end up trying to change that.

Back to Grandma. She lives in an often difficult, fraught and stressful house with the majority of the action geared around JJ and his needs. She never complains about the JJ as she is kind to the core, loves him dearly, and knows that none of this is his fault. But she’s now in her 80s and this cannot be the retirement she thought it was going to be. She is often banished to a safe space by me as soon as I can sense a meltdown coming. She’s witnessed frightening situations and been powerless to help her daughter, something which must be incredible distressing for a mother. She’s never been physically hurt, thank goodness, but I worry that it will happen one day. At a time when she deserves peace and quiet and to live on her own terms, she gets nothing of the sort. She doesn’t even get to cuddle her grandson anymore. Looking at it through her eyes it must be incredibly saddening. And she has a wobbly relationship with her daughter who is frequently stressed and distracted. But I’m so grateful for what she has done for JJ, and what she still does now. She offers unconditional love and absolutely no blame, despite tough circumstances. Thank you, mum. Love you.

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