I guess I’ve been really lucky up until now: the response to my blog has been so positive and encouraging it’s been completely overwhelming. So it shouldn’t have come as a surprise that, sooner or later, someone somewhere would feel prompted to make an altogether less upbeat comment about what I’ve had to say.
My post “https://throughacceptinglimits.wordpress.com/2012/11/11/an-open-letter-to-toys-r-us-4/“ has so far received more hits than the rest of my blog put together, and has prompted interesting discussion both on my blog and elsewhere. I am delighted that it seems to have given other autism parents a springboard for discussing their own experiences. The comments left below the post have, without exception, been hugely encouraging. Until now.
I woke up yesterday morning to find a comment from Lena which says:
You’re essentially one of those whiny mothers who has an excuse for everything, aren’t you? He can’t sit in a buggy for sensory reasons? You are the mother, you decide the rules! If he suffers from sensory overload, just don’t go into Toys’R’Us!
I took some time to decide how, if at all, to respond. The easy option would have been to decide not to give Lena space on my blog for her negativity, and simply delete her comment. But who am I helping by doing this? I am not naive enough to believe that Lena is the only person who thinks like this – she’s just the only one to have voiced such thoughts to me thus far. I’ve spoken elsewhere in my blog about the “tuts” and disapproving looks I’ve received when J displays “naughty behaviour” in public. I’m sure I’ve been on the receiving end of comments like Lena’s many times, but usually behind my back.
And of course there is my core belief, upon which this whole blog is based, and which is a very good reason for at least attempting to put together some sort of response to Lena. “Some things I cannot change, but til I try I’ll never know”. Though to be honest, I kind of do know. I’ve spent enough of my life trying to challenge prejudice and discrimination to know how hard it is to do so, and I know that however carefully I think through the wording of this response, I am very, very unlikely to change Lena’s position on this.
And yet. And yet I have to try. Not for me, but for J. There are many challenges and difficulties he will face in his life due to his autism, but possibly the worst of these will be the lack of understanding from others. So I have to at least try. It is highly likely that J will come across his own “Lena”. Who am I kidding? J will have to battle his way through armies of Lenas every day of his life. The people who tell him to stop making excuses. The people who tell him “if it’s difficult for you, why are you bothering to do it?” So if I can get just one of them to think a little more openly, and to feel a little more empathy, then maybe one day that will make J’s life just a little bit easier.
So here we go. Here is my response.Dear Lena, I’m going to try to deal with each of your points in turn, though I’m a little confused about what you’re actually trying to say. When I read your first sentence about being whiny and making excuses, I initially thought my challenge was going to be to persuade you of the “realness” of J’s sensory problems. However the rest of your comment seems to accept that J does suffer from sensory issues – so I am left baffled as to what “excuses” you think I am making. Still, let me firstly deal with the accusation of being “whiny”, which to be honest is the part of your comment that I find most offensive. I would invite you to take the time to read the rest of my blog. I realise no-one’s life is without its difficulties, but I think it’s fair to say I’ve had it tougher than lots. I’ve recently walked away from a horrific marriage and an excellent career to be a full-time mother to young twins, one of whom has autism. I have serious life-long health problems of my own. To be honest Lena, I think I’ve got good reason to be a bit “whiny” sometimes. Except I’m not. I can’t stand whiners. I am someone who always looks for the positive. I face challenges head-on and always try to change the things in my life that cause difficulty, rather than simply moan about them. My letter to Toys R Us was an example of this – rather than “whine” to my friends about my experience, I have done something practical and positive to try to improve the situation. I’d like to make the point that autism is a disability Lena. Would you criticise a wheelchair-user for whining that a shop was not wheelchair-accessible? Probably not. In my letter I was simply asking Toys R Us to consider making their approach a little more autism-accessible – but in order to do so I had to describe our experience in their store. This is not whining. If there’s one thing I can say about myself with absolute certainty – it is that I do not whine. This, of course, is stating the blindingly obvious … but you don’t know me. So you’re going to have to take my word on this one. I’ll move on to your confident assertion that, as J’s mother, I should make the rules. You don’t say whether or not you are a parent, but I think it’s fair for me to assume you are, at least, not the parent of a child with autism. Because you know what Lena? I do make the rules. Until earlier this year I had a 7-year career as a secondary school teacher in a tough London borough. I know all about setting rules. However, I also know all about making the rules appropriate to the child and the situation, and luckily for J, I know about recognising the difference between behaviour caused by simple naughtiness and behaviour caused by factors out of the child’s control. J has a lot of rules in his life. It is an absolute rule that, no matter how frustrated or anxious he is, he does not hit his sister. It is an absolute rule that he does not hold the kitten by the neck. It is an absolute rule that when I say “no more chocolate”, there is no more chocolate. These are manageable, clear rules for J. However, I do not think it is unreasonable for J to have some rules of his own in order to help him make sense of the confusing world around him. J is terrified of the phone at my grandparents’ house because once, a long time ago, it rang and made him jump. So it is an absolute rule that they turn it to silent when we visit. J derives huge comfort from reciting the same “scripts” every day as they provide a constant in a world that is otherwise unpredicatable and frightening. So it is an absolute rule that, as we turn left at the traffic lights on our way home from school, when J asks “Can we go to this house?” I must immediately respond “No, we don’t know who lives there”. And, for reasons I have not yet discovered, J finds it very difficult to sit in the child seat in a trolley. So it is an absolute rule that I do not try to force him into one. So please don’t talk to me about rules Lena. My life with J and L is full of more complex rules than you could possibly imagine. They are rules that have been honed and developed to help them live safe and happy lives, whilst also teaching them as much as possible about socially acceptable behaviour. As for “having an excuse for everything”. Well yes, we do have an excuse. Not for everything, but for some. J has an excuse for having screaming meltdowns in public. I have an excuse for looking exhausted and stressed. We have an excuse for believing people should treat us with patience and compassion. My son has autism Lena, and as much as I don’t want us to be different, we are. We are not a “typical” family, and as such I sometimes need to ask for a little more understanding and for people to think flexibly. And finally your not-massively-helpful suggestion: “If he suffers from sensory overload, just don’t go into Toys’R’Us!” Oh Lena, if only you knew how much and how often I wished I could follow your advice. How much easier would my life be if I were able to avoid all situations that might be likely to trigger one of J’s meltdowns or anxiety attacks. It is worth me repeating a point I made in my letter to Toys R Us – even if I wanted to do this it would be impossible. I am a single parent and babysitters are not always easy to come by. Sometimes I have no choice but to take my kids with me. But, for the sake of argument, imagine I decided I was going to follow your suggestion. Where would I have to avoid taking J in order to keep him calm and serene at all times? Toys R Us. Supermarkets. Restaurants. Playgroups. My parents’ house. My grandparents’ house. Friends’ houses. The park. Soft play centres. Birthday parties. The doctor. This list is not exhaustive. So perhaps you are suggesting I should keep J at home at all times. Except even at home we are not “safe” from the sirens of passing ambulances; the drilling going on while our neighbours renovate their house; the buzz of a lawnmower outside … the million and one things that, without warning, can trigger another difficult episode for J.
And even if home was a haven where J is protected from all outside influences that could cause him a measure of distress, would it really be helpful of me to keep him there, protected in cotton wool and bubble wrap and cuddles? Would it be good parenting? Of course not. One day J will be an adult, and despite the problems I have written about in this blog, I am hopeful that he will be able to live an independent, meaningful, happy life. But the journey from here to there will be a tough one, and I see it as my clear role to prepare him as much as possible. Sensory overload will happen everywhere J goes, and over the years to come I will have to help him find strategies for coping with this. And at the age of 3, it is enough that he is being exposed to these environments in a way that feels as safe and manageable to him as I can find. Yes, as he gets older we will move on to coping with the fact that he can’t always crawl into a trolley and put his hands over his ears, but for now it is about striking the balance. I do not want to keep J segregated from the real world but I do not want to traumatise him either. Therefore I am absolutely comfortable with my decision to take him to Toys R Us, and with my wish to allow him to ride inside the trolley.
Finally Lena, I would like to make one last point. I am going to do all I can to teach J how to live independently. But I am also going to teach him a very important lesson – one that it has taken me way too long to learn for myself. It’s OK to ask for help. As I have said, my life has been full of challenges lately – and I have found almost without exception that when I have asked for help it has been there. Friends, family and strangers alike have been delighted to have the opportunity to make my life a little easier. And I am going to teach J that there is no shame in recognising his own limitations and asking for help when he needs it. Equally I will have to teach him that occasionally he will meet people like you who would rather criticise and jump to their own ill-informed conclusions, but hopefully he will learn as I have that the people in this world who matter are the ones who treat others with kindness.
Thank you, Lena, for giving me the opportunity to respond to your views. I realise they probably come from ignorance rather than malice, and whilst I accept I am unlikely to change your opinion of mothers like me, maybe I have planted a small seed … so that maybe next time you start to “tut” and shake your head at the mother in the supermarket who is seemingly indulging her spoiled brat’s temper tantrum, maybe you will stop to ask yourself whether there is more to that family than meets the eye.