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.
Kind regards,
L
Through Accepting Limits 
I am the mother of three boys, two with Autism. I agree we have to strike a balance when it comes to our rules for our children with Autism. I also agree we can NOT keep them at home in their somewhat “safe” environment. My youngest son hated to leave the house and go anywhere. Therefore I took him almost everywhere with me. I endured the severe meltdowns he had, strangers staring, and some even made nasty comments to me. The best thing we can do for our children is to educate society and hope that society will be more accepting of others differences! Also I have to say “whining” is not what we autism mothers do, we state facts, we try to educate and advocate for our children.
Great to know my approach to “autism parenting” is shared by others. “Educate and advocate” sums up exactly what I’m trying to do – thank you for helping me find the words!
impressive misses standing up and giving you a huge round of applause and thank you!!!
Oooh a standing ovation – thank you! xx
Well said. I stand up and applaud you too. Keep up the good work of being a good mother to L & J.
Thank you hon! X
Beautifully written as always! What I like most is the part where you thank Lena for giving you the opportunity to clarify a few things. Through her criticism of you she has inadvertantly provided a platform for you help educate others. When I read her comment to you I felt my blood start to boil. But you perfectly illustrated to her that she needs to look beyond what we see when a child is having a meltdown, and consider the difficulties causing the situation. Parents need to pull together more and criticise/judge each other less. Thanks for this x
What a great comment – YES YES YES!! Why are parents so quick to criticise each other when we all know how tough it is … regardless of autism or other special needs? I’d be interested to know whether Lena is indeed a mother herself xx
I thought I had commented on this before now but I just wanted to say that one thing that has always amazed and impressed me is how you deal with everything thrown at you with an amazingly positive attitude. You could so easily sit around being all “woe is me” but you don’t and your attitude is an inspiration. I don’t know anything about bringing up an autistic child but you are doing a very good job of educating us all and that is VERY important!! You are awesome, your kids are awesome and don’t ever forget that!! 🙂
Thank you hon! Really can’t see much point in sitting around feeling sorry for myself – seems like such a waste of my time. Would much rather be doing something to make life better! Xx
Indeed.
My husband – bless him – sometimes makes me crazy by refusing to park in the handicapped spot for me. He doesn’t like the label.
Well, you know what? I don’t either, and I struggled and struggled with perceived stigma before I even took my hangtag application to the county clerk’s office. But then I realized: We make choices each and every moment of our days, some of which are choices we would rather not make, but for reasons of time, expediency, priorities, necessity – or sheer bullheadedness – we do anyway. In this case, it was my pride – and I realized that with my pride could come, yet again, another *literal* fall – or simply a slow and awkward – and highly embarrassing – physical collapse in aisle 16 from exhaustion. Thus, a handicapped hangtag is available to people who genuinely and verifiably need some accommodation in their lives.
I *cannot* walk *far* most of the time these days, though I can wear heels (I’ve worn them since well before I walked the runway as a model and frequently find them far more comfortable than my flats), I can dress up… it’s just the length of time out is exhausting. Disability laws exist so that people may maintain as much of a semblance of normalcy as possible. Maintain independence. And maintain dignity. I may *look* as though there is “nothing wrong” with me – but it is not up to the average person to decide that for me. I have doctor’s for that, and I have fired doctor upon doctor because they make the same assumptions based on my *appearance.* I was a model – and the daughter of a model – long enough that I can cover up nearly everything – and have the vanity to do so even when I simply should not out of sheer exhaustion. When I look bad, I can assure you things are grim indeed. I will be 45 in three months, and I haven’t yet been called out at 40. Most of my students take me for someplace in my early-to-mid-thirties. My mother at 70 looks as though she should be in my decade of life. It a blessing, yes… but it doesn’t help a damn bit when people make life-and-death decisions – and incorrect ones at that – based simply on how you *appear.*
So, each time my husband starts driving to the far end of the parking lot I remind him that, in order to walk with him through the store/school/library/doctor’s office/etc., some things need tweaking and forgiveness – and love. He usually then pats my thigh, gently smiles, and drives to the entrance to drop me off as close as possible to the door… and parks in the nearest handicapped space.
We do what we need to do to pursue our lives with the least negative impact all around. Thank goodness we have things (and people!) here and there to allow us to cope.
Probably the most important of those is, though, is not something physical. It is a combination of empathy and kindness in others. I would hope that Lena would understand that, and perhaps reevaluate her words. I am glad my husband does. And I am looking forward to Toyz-R-Us seizing the power to change themselves as well.
Thinking of you, dear.
:::hugs:::
Love this blog sooooo much. People like Lena are ignorant and do not think before they open their mouth to criticise, probably because they have no experience of or empathy for the challenges that some people face. And I applaud you for your perfect, insightful response.
I know some people may find my comment offensive because of the language I am about to use but I don’t care, because in this case only the f word will convey how much I mean my next sentence.
You are fucking amazing.
That is all.
I am now going to go back and respond to Lena myself. Excuse me…
Thank you honey, that means a great, great deal to me – as does your letter to Lena. Left me kinda choked!
Mwah xx
You are the most amazing mother! Any mum who wants their child to become independent and strong is truly a mother who wants the best. If Lena is reading this and she does have children, I would be concerned about what she may be teaching her own kids- as my only perception of her is from that comment, I can only assume she models her own ignorance and quick judgements to her own kids.
As for not taking J to Toys R’ Us because of potential concerns, should every mother then not take their child anywhere because of the dangers of say, falling off the swings, strangers in the park or dangerous drivers on the road? Don’t think so.
Still sounds like a whiny autistic mother to me.
Then I think you and I have a very different understanding of the word “whiny”. Also I’m not autistic, my son is. I’m an autism Mum, not an autistic Mum.
Sadly I accept that I cannot change the views of every ignorant small-minded person who comes across me or J in our lifetimes. But that’s sure as hell not gonna stop me trying.
Thanks for taking the time to read my blog Rosie.