The Gift of Unconditional Love

Very often when I talk with parents of Autistic children, especially parents of Autistic children who are non-traditional communicators, one of their deepest and most abiding fears is that their child will never say the words, ‘I love you’ to them. It seems to many parents to be such a fundamental and profound need, to hear those words, spoken by their child, in their child’s own voice, like it is the ultimate proof of the bond between child and parent, the paramount evidence of shared devotion. And from the murmurings of sympathy I hear from other parents, many share this view.

And yet… I wonder about the visceral grief parents feel when they find themselves facing a future in which they may not hear ‘those words’. I wonder when words became so important, and when having a metaphoric voice became synonymous with having a literal one. Does a child who uses AAC (Augmentative and Alternative Communication) to say ‘I love you’ say it with any less conviction for not using their vocal chords? Does the fact that a child uses signing to say “I love you” undermine the depth of their feeling? Does a child who shows their love through their every communication and behaviour, but not with their words, feel that love any less?

It’s the last one, isn’t it, though? Because ultimately parents doubt their entirely subjective interpretation of their child’s intention in particular behaviours. Does their child’s smile constitute a declaration of love? Does a cuddle? Does their son’s preference for their company, above everyone else’s, speak to his love for them? Does it indicate love when their Autistic daughter seeks comfort from them, and believes that they can give it to her? What about when their child simply glances in their direction, to make sure they are still there? What about when their son trusts them, and them alone, to touch him, even though he anticipates that their touch will be excruciating? Is this love? Is it a declaration of love? Is it enough?

I would answer emphatically yes. Our children communicate their love to us every day, through their actions and behaviours. Sometimes that communication is obvious: my littlest likes to make his fingers into a love heart sign and then point to me. Sometimes it is more subtle and nuanced. When my eldest sits next to me, he likes to rest his foot on top of mine, just to show me that he is there for me, and to assure himself that I am there for him. Sometimes as parents, we just have to learn to read the signs better, and to trust our children that those signs are there. Because, for the most part, they are.

One of the few idioms I really understand is the one about ‘actions speak louder than words’. When I googled that, the first thing that came up was: ‘people say things and make promises they have no intention of keeping on a daily basis. You can tell someone you love him or her as many times as you want, but until your behavior coincides with that, the other person will probably not believe you’. And isn’t this the crux of it? For me, I’d much prefer to experience love from my child than to hear it. I’d much prefer them to show me that they love me — in whatever under- (or over-) stated, idiosyncratic, unique way that suits them — than to hear recited words on automatic recall. (Cue Extreme crooning ‘more than words’, and all that.)

And if that’s true for our children, then it is so for us as parents as well. Most of us offer our children the words ‘I love you’ regularly. But do our actions always reflect that declaration? By just saying ‘I love you’ to our children, do we make it so? Will our children see our love in our actions and interactions with them? Will they believe us?

Unconditional love. It’s what we expect of our children: despite our good days and bad, despite our crotchety moods and accidental mistakes, despite our loss of emotional control, that cutting edge to our tone when we’ve had a long day at work, our exasperated lack of patience, the odd moment of lapsed empathy or judgement … we expect that our children will forgive us unconditionally and love us nonetheless. My question, though, is whether we parents offer that same unconditional forgiveness and love to our children? Of course we love them in that biologically-charged kind of way, because they are our children, but do we actually like our children? Do we enjoy their company and find happiness in their presence? Do we really love them for the exceptional, joyous, wondrous beings that they are? Because, if we do, that means loving their Autism, too.

Recently, I was reading an academic article about parenting children with disabilities (not just Autistic children, but very apposite in an Autistic context). The authors lamented the way in which, after a child’s disability diagnosis, parent education often insists that interventions and therapies are inserted into every aspect of a child’s life, even into their home life. This intervention-focus negatively impacts on the way in which parents are able to express their unconditional love for their children. By overlaying ‘intervention’ and ‘therapy’ into every aspect of a child’s childhood, parents make the home an unnatural, performative environment. The authors argue that, over time, children internalise the message that they are not worthy or deserving of unconditional love as they are, that they must change, perform and mask in order to be gifted love. The message is not explicit, nor is not necessarily consciously intended, but children soon come to the understanding that they are unacceptable and unlovable as they are (Turnbull et al., 1999). For our Autistic children, they come to the understanding that — whilst Mum and Dad love them as part of that primal urge to love and and protect one’s progeny — they aren’t necessarily likeable as unique human individuals. They internalise the understanding that in order to be more likeable and more personally, profoundly lovable, they need to perform less-Autistically.

But our children have a right to know that their Autism is loved unconditionally too; they have a right to have their identities accepted and loved by their parents. More than that, actually: they have a right to have their Autistic identities appreciated and liked by their parents. Because loving, accepting and appreciating all aspects of our children, including their Autism, gifts our children a sense of intactness (a word I’ve taken from the Turnbull et al. article). ‘Intactness’ is the simple concept that all aspects of identity, of self, are valued as an integral and positive part of an individual. This concept of ‘intactness’ is a key one: all children should feel lovable (and likable) as themselves, authentic and unchanged… intact. The freedom to experience ‘intactness’ of self is essential for the development of healthy self-esteem and positive self-regard, and is based in part on a ‘parent’s ability to show pride and pleasure in the disabled part of the body, as one valid aspect of the child, and to communicate appreciation and respect for the child’s unique, often different-looking ways of doing things’ (Turnbull et al., 1999, p. 165).

If, as parents, we don’t value our children as whole and complete, if we don’t view our children as worthy of our unconditional and unqualified love, and if we don’t acknowledge and accept their value to our community, our children will grow up with the perception that they must change their essential selves to deserve our unconditional love.

And, of course, if they must change themselves to be loved, our love is not unconditional at all is it?

Let’s face it, if our children internalise a need to change to be loved, that is tantamount to them being unlovable as they are: Autistic. Unfortunately, ‘parents too often communicate to their child, directly and indirectly, that the disability should be hidden or altered, if not purged — the child should strive toward appearing as “normal” and nondisabled as possible’ (Turnbull et al., 1999, p. 166). This striving towards normalcy, the effort to conform to the homogenous ‘typical’, sacrifices a child’s intactness, their wholeness, their identity… It sacrifices their sense of self.

How, then, should we parent? I have written before about the important of investing in your relationship with your Autistic loved one (https://reframingautism.wordpress.com/2018/10/15/investing-in-relationships-the-core-business-of-parenting/). That is fundamental. But ultimately, I think we must approach parenting from our child’s perspective. We must offer them the kind of unconditional love that we expect for ourselves. And we must understand what is valuable by listening to the voices of other Autistic children and adults. We must develop a genuine respect for Autism and for Autistic individuals, as valued and valued, whole and complete, worthy of unconditional love, and deserving of unqualified inclusion. We have a responsibility to do better for our children and to embrace their intact identities. As parents, as a community, we have a duty to match our actions to our words, to demonstrate our unconditional love by embracing our children as they are, not as we’d like them to be. For our own children, and for each other’s. Our children deserve that.

Advertisements

Investing in Relationships: The Core Business of Parenting

At a workshop a few weeks ago, I was talking to parents about how they spend their time with their children. We were talking specifically about how they devote themselves to their Autistic children. There is no doubt that parents are busy. The struggle of the juggle is real. Work, domestics, parenting … they all very often result in parents being stretched too thinly. Let’s face it, it makes me exhausted just thinking about the never-ending rotation of cooking, cleaning, washing, groceries, ironing, not to mention the diplomacy required to negotiate the tricky business of sibling interactions, or the extra-curricular routines that require a dedicated taxi service, or the day-to-day skirmish required to achieve clean bodies, hygienic teeth, full tummies. And, for many parents of Autistic children, you can add into that mix of commitments appointments, therapies, interventions, planning and executing funding agreements, working on goals, lack of sleep, repeated meetings with schools and preschools, preparing visuals and social stories. The list goes on. It wasn’t a surprise, then, that the parents with whom I was speaking at said workshop talked about the time they spend with their Autistic children in terms of appointments, therapies, and the general overwhelm of ‘jobs’ to be ‘done’.

We are very low on therapy in our family. We do only just as much as we need, and nothing intensive. But even still, I am entirely sympathetic to this position. I’m an Autistic Mum, homeschooling her three Autistic boys, working part time, a volunteer, a writer, and the designated keeper of ‘home duties’. It’s a lot. But I’m lucky: in homeschooling my gorgeous boys, I have an opportunity that many other parents miss out on… I have the opportunity to invest deeply in my relationships with my boys.

So, to those parents who are swamped by the ‘jobs’ to be ‘done’, by the appointments to attend, by the therapy goals to achieve, I want to offer a different perspective. I can’t take away the need to provide clean clothes or to satiate hunger. But I invite you to stop and reflect on the core business of parenting. I’d suggest that the real core business of parenting – and especially parenting an Autistic child – is not to insert therapy and intervention into every moment of their life, not to focus on their development at every turn, not to engineer every moment for social skill development, but instead, very simply, to invest in a genuine, unconditional, compassionate and loving relationship with your Autistic child.

What do I mean by investing in your relationship with your child? Well, I’m talking about relating to your child beyond satisfying their biological needs and beyond working towards your priorities for their development. It’s not about taking them to the park to expend some energy and watching them play, although that may be involved; it’s not about ferrying them to soccer on Saturday morning or Drama after school and watching them participate. I’m talking about actively and consciously becoming your child’s companion and their friend, learning from them to marvel at the berries they pick in park, sharing with them in a moment of wonder and satisfaction at a perfectly organised line of toys, appreciating fun and play in the way your child does.

Investing in your relationship with your child is about getting to know your child on a profound and authentic level, so that they know that you not only love them because they are your child, but that you love them because you genuinely enjoy spending time with them: that their company is so enjoyable to you that it is worthy to be given some of your valuable, precious time. Play with your child, engage in their passions, stim with them, and accept that whatever they do, you can find delight in doing it too. And by play with them, I don’t mean ‘playing’ within some normative construct of turn-taking and sharing and imagination, but the very simple idea of engaging in something for enjoyment, with no expectations or prescriptions.

Sharing in your child’s passion is powerful. Before I had my children, I was typically Autistic in my deep and abiding passion for one subject. Since I was seven years old, I have been interested in one, single subject, to the exclusion of all others. I spent my whole primary and secondary school career waiting for the moment that I could do a degree devoted to my one subject, then I did a PhD  in it because I Just Needed More. For me, that subject framed my everything. You couldn’t understand me, couldn’t connect with me, couldn’t enjoy my company, unless you were willing to engage with me about this particular subject. Because I have the insight of this lived experience, I understand that my children have similarly consuming passions. And I know that just as I felt most loved, most competent, most alive, most connected, when someone invested in me by investing in my subject, so too do my children.

When I say that my subject is totally and completely unrelated to steam trains, war planes, the universe, and bats and zombies (my children’s areas of passion), I understate the distance between my children’s interests and my own. But just today, I have invested hours with my littlest guy investigating the differences between Megabats and Microbats, their anatomy, understanding echolocation, and exploring the unique quality of the membrane that makes bats’ wings so incredible. We talked. We researched. We watched YouTube videos together. We trawled the internet for every single bat plushie available online. We debated which would be best to go on his Christmas list. Maybe that doesn’t sound like play. But it was for him, and who am I to say otherwise? And at the end of the those hours together, he and I had shared something intense and exceptional and utterly delightful and enjoyable. We shared companionship and friendship and love. And he was so generous with his passion, his enthusiasm, his pleasure. For those precious hours, when it was just him and me, with no jobs, no motives, no goals, we could just appreciate each other’s company and love. We could enjoy each other.

Now don’t get me wrong. I still don’t find bats an especially compelling subject. I shall not dream about them tonight. But, well, it was fun learning about them today, partly because I loved seeing my son’s enjoyment, and partly because, to be honest, it was liberating just to be curious. My son’s passion was more than enough to ignite an eagerness in me to learn, to be educated. He made me a better person today, and certainly a more knowledgeable one. It’s not always that case that your children’s passions will excite you deeply. One of my children loved flicking light switches on and off. Another enjoyed watching the blades of fans rotate. There’s not as much there to interest my intellect. And yet, sharing in my children’s joy, recognising and being instrumental in their happiness, trying to see and to experience what they find compelling about these pursuits… well, that’s more than enough motivation, and reward, for me.

Which brings me neatly to something I’ve noticed since I spend more and more time investing in my children’s passions. For the longest time, I framed our interactions by using rewards. Rewards which accumulated over days and weeks to motivate my children to do the things that needed doing. Extrinsic motivation. Goal-driven motivation. What’s incredible to me is that as I have dedicated more and more of my time investing in my relationship with my boys (mostly, as I said, by engaging and playing with them around their areas of passion), I have noticed that rewards and extrinsic motivators have less and less currency in our house. Part of that decrease in rewards stems from the general increase in well-being and happiness that accompanies someone (i.e., me) valuing something of value to you (i.e., my kids’ passions). And part of it stems from our new (and I’m arguing, better) relationship. My kids come to eat dinner not because they necessarily want the dinner I’ve cooked, not because they don’t want to finish whatever they’re doing  at the moment before dinner, and not because I’ve offered them a tokenistic reward to do so, but because they actually enjoy spending time with me. And they know — really, properly know — that I enjoy spending time with them too. They know I will ask knowledgeable questions about their passions. They know that their preference for a topic of dinnertime conversation will not just be tolerated, but actively embraced. I am not resigned to engaging with them, I relish it.

Looking back, I am honest enough to realise that I often used rewards to abrogate my responsibility to establish meaningful relationships with my children. I rewarded them into compliance because I was too busy to dedicate the time to invest in building the relationship. It wasn’t a conscious decision, but the busyness of life trumped nurturing a reciprocal connection with my kids. But now, the relationships I carefully and consciously and continuously foster with my children has become their intrinsic motivation. They are loved, and they love, and it is joyful. For me. And for them. The attachments that I share with my children don’t negate every challenge, or provide solutions to every barrier we face. But those challenges and barriers are far less daunting now, because at the end of each day, I truly appreciate what wonderful humans my children are, and they appreciate that in themselves.