An Open Letter to the SATs Teachers

The SATs results tell us something, but they do not tell us everything…

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Today I sent this letter to J and L’s teacher.  Whilst some of the details will be different for each teacher and each parent, the sentiment holds true for so many dedicated, patient, hard-working, caring teachers.

Dear Miss B,

This week your pupils will take their SATs.  Many, many parents across the country have publicly voiced their opposition to testing our young children in this way, and some schools were rightly praised for writing to their pupils assuring them that SATs don’t test or recognise all their special gifts that make them unique, wonderful people.  At the same time, concerned parents received the response that we should not feel worried as SATs are there to test schools and teachers rather than the pupils themselves.  If this is true then perhaps it is the teachers rather than the pupils who deserve the most reassurance.

With this in mind I wanted to write to you to recognise how little the SATs results will show about what kind of teacher we know you are.  The results won’t show, for example, how your class adored you from the day they met you.  The SATs won’t reflect the warmth with which you greet our children each morning; the way you have got to know and care about them as individuals; the way you recognise when something is wrong; or the way you deal with problems so sensitively and professionally.  The SATs don’t acknowledge the long hours you work in the evenings and at weekends, or the fact you come to work with a smile even on the days when you’re not feeling terribly cheerful.

The SATs don’t know that J and L fight over who gets to “be” you when they play schools at home.  The results won’t acknowledge the time and care you have put into thinking of creative ways to engage J in his learning; the fact you’ve never made me feel like his autism is just another problem for you to deal with; or the huge strides he’s made this year in his ability to participate in a lesson thanks to you.  The SATs don’t see how much L loves going to school, or the way her eyes shine with excitement as she tells me about your innovative lessons.  They don’t reflect the fact that you have inspired her to create books and further her knowledge at home, or that she has already shed tears at the realisation that you won’t be her teacher next year.

Your class’s SATs results won’t reflect the time you spend listening patiently at parents’ evenings, never making us feel rushed or a nuisance, and always responding in a positive and proactive way.  They won’t show what it means to us as parents to leave our children in the care of someone who makes them feel so safe, nurtured and happy.

The results of your class’s SATs tests do, of course, tell us something.  Naturally we want our children to receive a high standard of education.  We want their knowledge, understanding, and skills to improve while they are at school, and for them to reach their full academic potential.  The SATs results tell us something, but they do not tell us everything.  As an ex-teacher myself I remember the anxiety of knowing my abilities as a teacher would be judged on the basis of how my pupils performed under exam conditions.  I want you to know that I – we – have judged you on so much more already, and are deeply indebted to you for the very, very many ways you have enriched our children’s lives since they started Year 2.

Warmest wishes.

When I Grow Up I Want To Be Like My Children

About six months ago, L started to notice that her twin brother J was “different”. She asked why he sometimes ignored her when she was talking to him. She asked why he always needed to repeat his daily scripts as we passed certain points when we were out in the car. She asked why he clamped his hands over his ears and shouted during tannoy announcements in supermarkets. She asked why it would sometimes take J a few minutes to answer a simple question; why he could not cope with making choices; why he would lay in bed screaming in the early hours of the morning; why he was obsessed with meerkats. She asked a lot.

At the same time J listened to L’s questions. Her enquiries meant that his difference, his “strangeness” was being pointed out to him. And whilst he made no comment I could see he was absorbing L’s questions. I saw the anxiety and confusion flicker across his face as L reeled off the ways in which he failed to behave like “normal” preschoolers. And I knew that my reply: “Because that’s just what J likes to do!” wouldn’t cut it for long.

So that’s when I first considered the idea of introducing the term “autism” to my 3-year-olds.

I initially broached the subject by gently introducing the concept of “disabilty” to them. L had only recently noticed that one of the presenters on CBeebies is missing the lower half of one arm. We had discussed some of the things she might find difficult and how others might be able to help, both practically (offering to tie her shoelaces) and emotionally (not saying mean things to her). And suddenly L’s world changed. Difference was all around her. She was, inevitably, full of questions. Why did that lady need to sit in a chair with wheels? Why did that man sound funny when he talked? Why did that big boy keep hitting himself on the head? Why did those people need sticks to walk? She very quickly grasped the idea that sometimes there will be part of someone’s body that doesn’t quite work the way it should, or work like everyone else’s. She understood that it might make life a little harder for that person, and that we should all do what we can to be kind and helpful to each other.

We talked about the infusions I do each week and she grew to understand that part of Mummy’s body doesn’t work like everyone else’s either – but that you can’t see it. L learned what an immune system is, and shouted angrily at her “fighters” to “make those germs scram” when she caught a cold. And finally we talked about J. I explained that whilst J’s body works fine (I’ll save the explanation of hypermobility for another day!), he sometimes thinks and feels differently to others. We revisted all of L’s “whys” and she started to put the puzzle together. J shouts in the supermarket because he hears everything really loudly and it hurts his ears. J sometimes ignores her because he can only think about one thing at a time. J screams in his bed because his brain isn’t very good at going to sleep. And gradually I introduced the word “autism”. At first it was hard to explain such an intangible condition. But then L would start to ask “Did J do xxx because he is autism?” (I still can’t get her to say he has autism!). Sometimes I would reply “Yes, I think J probably did xxx because he has got autism”. And sometimes I would reply “No, I think J did xxx just because that is what J likes to do”. Again, J listened and absorbed. And as autism by its very nature likes facts and answers, rather than intangible questions, J seemed at peace with the answers that were emerging.

And of course, we talked again and again about how much we love J, and how the things that make him different also make him very, very special. I knew I had overdone the “J’s autism makes him special” when L tearfully insisted that she is “a little bit autism” too. I didn’t protest too hard. We’re probably all a little bit autism after all.

And as time has gone on, “autism” has become just another word in J and L’s ever-increasing and hugely impressive vocabularies. It is simply another descriptive term. L has got blue eyes and curly hair, is very little, and loves to sing and make pictures. J has a wicked laugh and autism, is great at reading, and loves shapes and tickles. Sometimes J will refer to his autism and a little more often L does. Occasionally I have found it very useful in explaining J’s own behaviour to him, when he seems confused by his physical and emotional responses to different stimuli. But mostly no-one in our house mentions autism because no-one needs to.

I did not take the decision lightly to tell my children at such a young age that J has autism. After I had done it I worried constantly about whether it had been the right thing to do. Their response reassured me to a certain degree. But it was a conversation we had today that finally left me in no doubt that I had done the right thing.

A little boy, B, has recently joined J and L’s class in nursery. B has autism. I know very little about him, but it is clear that he is not at the same point of the spectrum as J. He is non-verbal and it seems that his autism is notably more severe than J’s. In the car on the way home from nursery today J suddenly said “Let’s talk about B!” I asked what he wanted to tell me about B and he said B had kept opening the classroom door today. I remarked that this was funny – B likes opening doors and J likes closing them. J said “Yes, B is like me!” A split second later came L’s inevitable question: “Is B autism?” “Yes” I replied, “I believe B has got autism”. “Oh!” said L. “That’s why he doesn’t talk!” Bearing in mind J’s verbal communication skills are excellent I was surprised she had made this connection. L went on to explain all the autistic traits B displays during an afternoon at nursery. I have to say her diagnostic observations are impressive.

Then L told me B had pinched her today. She said it hurt. I thought about my response before saying that I didn’t think B meant to hurt her or be naughty, but he still needed to learn that he mustn’t pinch people so L must tell the teacher if it happens again. Then L said something that brought tears to my eyes. I have reproduced her words as faithfully as my memory allows:

“Poor B” she said. “Maybe he wanted to be my friend but didn’t know how to tell me. I don’t mind that he pinched me. He probably knew that I would be kind to him because I know all about autism. If he does it again I will say ‘No B, pinching makes me sad. Do you want to play instead?’ Do you think that will make him happy Mummy? It must be very upsetting to not be able to talk or to tell people what you want. Maybe we should have a play date with him”.

Then J, who had been quiet for some time, added: “B has got autism like me. I will be his friend”.

If my children go on to climb Everest and win Nobel prizes, I can’t imagine ever being prouder of them than I was in that moment. At four years old they have openly understood and accepted difference and, through their own volition, considered ways to embrace it. They have shown empathy, compassion and kindness. The thought that B may grow up remembering the two children who offered to be his friend rather than shying away from him fills me with joy.

And I have learned an important lesson today. I have been so busy trying to change the world so that everyone is loving and accepting and understanding towards J, I forgot that he has it in him to be all of that for another. A year ago I could never have imagined being grateful for J’s autism. Now I am just starting to realise how many gifts it has given us. And the greatest of all is that it has made my children into the kind of people who wish to befriend a boy who might otherwise remain friendless. What parent could ever ask for more?

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Can You Feel The Love Tonight?

What a difference a week makes. Last Friday I was excited that I would be taking my children to see their first West End show and thanking the gods of calamine lotion that L’s chicken pox had cleared up just in time for us to go. Fast forward a week and I’m now looking back at the past few days with amazement. So much has happened in such a short space of time that I think I need to reflect and take stock.

Over 6000 people have now read my post describing our trip to the autism-friendly performance of Lion King. I know some blogs have tens of thousands of hits a week, but for me 6000 in three days is A LOT. I have received literally hundreds of emails and messages from other people who have children or family members with autism, thanking me for my post and for raising awareness of the challenges we face. I have lost count of the number of people who told me my post made them cry. My post was re-blogged, tweeted and linked to more times than I know, including by Theatre Monkey who called it: “The Most Moving Theatre Blog Ever”. I have been asked by Disney’s PR company if they can use my post to promote next year’s performance, and they have circulated it amongst their journalist contacts. I have been thanked by various members of the Lion King crew for being so complimentary about their involvement (They’re thanking me! How ridiculous!) I’ve had phone calls with one of the stars of the show who is now my Facebook friend (I couldn’t be more excited or star-struck if it was George Clooney). I was invited to talk about our experience at the show on a national radio programme, which I did this morning. I have been contacted by the director of another London theatre as well as someone from a small local drama group, both of whom are planning to look into organising similar performances after reading my blog. And possibly most overwhelming of all has been the outpouring of love and encouragement from the hordes of friends and family who have been texting me and sending Facebook messages over the last few days. So please excuse the twee and slightly tenuous Lion King reference but … can I feel the love tonight? Hell yes!

It’s certainly been a whirlwind of a week, but I find myself asking – what now? How can I harness this incredible love and support and carry it forward, so that I can continue trying to make the world a better, more accepting and understanding place for J and children like him? I can’t help thinking back to our difficult experience in a large toy store and the negative and dismissive response I had from one reader, and wondering – is it enough? It is unrealistic in the extreme to think I can single-handedly wipe out all traces of prejudice and discrimination from our society. But I can’t help feeling I must be able to do more. This isn’t quite as selfless and altruistic as it sounds … and if I’m being completely honest I think one of my motivations here is fear. Fear of how the world will treat my precious J as he starts to grow up and find his way.

And so I find myself in uncharted territory … I am being pushy. I am doing everything I can think of to get more media exposure, so that I can reach the widest audience possible. Obviously if my write-up of last Sunday’s performance leads to more of the same then that will be great. More than great, it would be bloody fantastic. But I need more than that. I need people from outside of the autism community to understand WHY these performances are needed, and WHY children and adults with autism need to engage in behaviour that might be perceived by others as unusual or disruptive or naughty. And then to take that a step further, I want people to understand what they can do to help. I want them to know that it really doesn’t take much. Giving our children a little time to think and formulate a response after asking them a question. Giving parents a smile instead of a disapproving stare. Asking the parent with a tantruming child if they need help, rather than muttering about them behind their back. Recognising the unique way that so many autistic children see the world, and considering what we can learn from them. Looking for ways around their challenges and limitations, rather than writing them off.

So I will continue to push for more media coverage … but assuming I don’t become an international writing sensation on the back of this, I need a Plan B. And luckily I have one. I’m planning to utilise all this love that’s been flooding in all week. Because ultimately, the more people who read this blog and other accounts like it, the more we really will start to change the world one person at a time. Up until now I’ve only really ever written this blog for myself – as a cathartic way of dealing with some very difficult times in my life. But now that changes. For the first time I’m asking those of you reading this to share it with your friends, and your friends’ friends’ friends … because maybe my Lion King reference isn’t so twee or tenuous after all. I AM feeling the love, and I can’t help thinking it’s that very love that’s going change the world.

Hakuna Matata On A Sunday Afternoon

From the moment I heard there was to be a one-off autism-friendly performance of The Lion King, I knew we had to go. Musicals have been my greatest passion ever since I was a teenager, and even when I was pregnant with my twins I’d dream of sharing this joyous experience with my children. I would lay in the bath singing show tunes to my bump. In fact I went to see Wicked when I was about three weeks pregnant – before I was even aware that my little ones had been created.

Once J’s autism came to light, however, it seemed less likely that he would enjoy a West End show with me. J has hyper-sensitive hearing, can be overwhelmed by large crowds, and does not seem to grasp the need to be quiet in certain situations. So when I heard there was going to be a performance of Lion King aimed specifically at an autistic audience, it seemed too good to be true.

I asked my parents how they would feel about buying the tickets as the children’s birthday present, as the performance fell two weeks after their fourth birthday. Of course they said yes, so having bought our tickets for Row H of the stalls, I waited patiently.

When the tickets arrived, there was an accompanying letter inviting me to use the resources on the website prior to the performance. Clearly considerable time and effort had gone into producing the visual story which enabled me to prepare J for our visit. It meant he knew what he would see when he arrived, and how the show would start. And indeed, when the big day arrived and we had experienced the excitement of a Tube journey and a taxi ride, J was very excited to see the theatre, exactly as he had seen it on the laptop screen the day before.

But it wasn’t until we took our seats in the Lyceum Theatre that I started to realise quite how special an experience this was to be. I looked around as the 2000-seat auditorium began filling with a truly unique audience. All around me were children, teenagers and adults with varying degrees of autism. Many were flapping their hands and jumping up and down. Some were rocking back and forth ferociously in their chairs. Others were making unusual hand gestures, or clapping their hands over their ears. Many were wearing ear-defenders to block out the sounds around them. Some were spinning around in the aisles, others sat on the floor and refused to stand. And the noise level grew and grew, with the sound of people groaning, screeching, hooting and laughing. To the uninitiated this might have looked daunting, even frightening. But to us, the parents and families of people with autism, this was pure happiness. Unlike J, many people with autism are non-verbal. The best way they had to express their growing excitement was to make these strange-sounding noises. And for some, like J, the noise and the crowds were overwhelming. Some made their own noises to block out the sounds around them. But this was fine too. This was part of giving our children an experience many of them would never have otherwise been able to have. And then I realised – a large part of the increased noise level was due to the parents who had excitedly brought their children to this special event. A theatre visit usually involves the audience taking their seats quietly, rustling through their programmes as they wait patiently for the curtain to go up. Not so here. All around me I could hear people introducing themselves and their children, comparing experiences, empathising. We were amongst friends.

The show started 15 minutes late. The organisers probably underestimated how long it would take to seat a special-needs audience. In that time, J had insisted on sitting on my lap and fallen asleep. Like many, many children with autism, J is a very poor sleeper. He had been up since 2am. (Incidentally, like many, many autism parents, I am permanently exhausted. I had also been up since 2am!) But at last, two cast members in full costume took to the stage. The audience grew quieter: something was about to happen. And then the man in the lion costume spoke.

“My name is George” he said “and I play the part of Scar”. This was clever. This helped the audience differentiate between the actors and the characters. Good start. George went on to speak briefly about what an honour it was to be able to present this unique performance to us. And he meant it. The emotion in his voice was clear. The audience applauded loudly. This made those with hyper-sensitive hearing groan louder. He introduced the woman standing beside him, who plays Rafiki, and explained that she would be singing the first song in the show. Again, a thoughtful measure to help prepare the audience for what would come. “Much too often” said George meaningfully “autism has to adapt to society. It’s about time a little bit of society adapted to autism!” The audience erupted. I burst into tears. The woman next to me handed me a tissue, as she also stifled a sob. They understood. All these people around me – the families, the cast and crew, the staff of the theatre and the National Autistic Society and Disney who were lining the auditorium ready to help: all of them understood.

And then the show began. I didn’t want J to miss the exciting start, as the huge jungle animals walked right past us. “Wake up J!” I said. “Look darling! Look at the elephant!” He opened his eyes blearily, and then rubbed them. He stared in open-mouthed wonderment at what he was seeing and whispered to me: “Mum! I see a giraffe!”

I cannot imagine the cast have ever performed to an audience like it. At times the noise in the auditorium made it difficult to hear what was happening on stage. But at no point was anyone shushed. No-one was on the receiving end of dirty looks, whispered comments about controlling our children, tutting and head-shaking. It was all OK. In front of me a teenage boy was rocking so hard in his chair that his mother tried to stop him and turned to apologise to the woman behind her. “Please don’t” said the woman. “He’s absolutely fine”. Each time Scar, the baddie, appeared on stage, a young man wearing ear defenders leapt into his father’s lap and buried his face in his neck. Behind me another teenage boy was completely overwhelmed. He stood up waving and flapping his arms violently. “Please sit Paul!” his mother pleaded. “Please just try!” In the end his father took him out of the auditorium, where they went instead to the thoughtfully planned relaxation area, full of large bean bags and tactile, sensory toys. Next to Paul’s mother, another boy was so lost in the wonder of the African drumming that he sat with his eyes closed, drumming his own beat loudly and enthusiastically on his thighs. Two rows in front of me a girl put her coat over her head as the show started. She left it there for the entire performance and no-one from her family asked her to remove it. Every time the audience applauded at the end of a song or scene, J clapped his hands over his ears and shouted until the applause subsided. He then thought of something funny his cousin had done last month and repeated what she had said again and again, very loudly, for about 20 minutes.

When the song Hakuna Matata started J recognised it and tried to sing along. The words of the song seemed so poignant at that moment. “It means no worries for the rest of your days.” Sadly I realised, the opposite would be true for so many of the young people sitting around me. The challenges caused by their autism will likely mean the rest of their days will be fraught with worries. But, for that moment at least, their worries were suspended. Hakuna Matata for a few hours.

When the curtain fell for the interval I needed to change J’s nappy. We went to the relaxation area where I sat on a bean bag to do it. No-one batted an eyelid. Every parent I passed wanted to engage me in conversation – about the show, about our children, about autism. I remarked how wonderful it was to allow J to behave exactly as he needed to, without fear of being judged as a bad parent. Everyone I spoke to felt the same.

The second half passed with as much noise and excitement as the first. Paul finally returned to his seat behind me, where his mother kissed him exhuberantly saying “Thank you Paul! Thank you for coming back! See how beautiful it is!” The drumming boy laughed loudly and hysterically at Timon and Pumbaa. J screeched with laughter when, on the stage, Zazu walked into the wall. “Zazu went crash!” he shouted joyfully. I wondered at times whether the cast had fully realised what they were letting themselves in for. It must have been the first time in their acting careers that they had to fight to make themselves heard. I hoped they could feel how enraptured we were by the beauty of their singing and the breathtaking staging.

When the final curtain call came, I leapt to my feet with J in my arms. I whooped and cheered for all I was worth. J hated this and screamed at me to be quiet, but I couldn’t. I had to let all those responsible for this incredible production know just how grateful I was and how much it had meant to me. As the house lights went up and we put our coats on, J started sobbing. “I don’t want to leave Lion King!” he pleaded. “I want to stay at Lion King!” He was placated by the Lion King flag handed to him by a smiling staff member on the way out, which is now taped proudly to his bedroom wall.

I don’t know whether the cast and crew of Sunday’s performance realise quite what an important thing they did. This went way beyond allowing people with autism to experience a trip to the theatre. What this performance did was to make us normal. For a few hours, our children and family members were free to be themselves and to behave however they needed to, without fear of judgement or retribution. For a few hours, we did not feel the need to apologise for our own children. For a few hours, no-one felt they had to explain anything. For a few hours we had no worries. Hakuna Matata.

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Conflicting Responsibilities

I’m in a quandary: I’ve got a humdinger of a dilemma. A puzzling parenting predicament to ponder.

J & L will be 4 years old in March, and after lengthy discussion have decided they want a “Ben and Holly” themed birthday party. For those of you not familiar with “Ben & Holly’s Little Kingdom”, it is a children’s cartoon about Princess Holly the fairy, and her friend Ben who is an elf.

L had the idea that all the party guests could come dressed as fairies or elves, which was met with enthusiasm by J – though when I suggested that L dress as Holly and J as Ben, J replied “I don’t want to be Ben, I want to be the Wise Old Elf”. I reassured him that this was not a problem, and I would get him a long white beard to go with his elf costume.

The next day it was evident that J had been giving the party some thought. He told me he had changed his mind and no longer wanted to dress as the Wise Old Elf, but now wanted to be a fairy. “That’s fine” I replied. “King Thistle is a fairy, you could have a crown and wings just like him?” J seemed satisfied with this response. But then a couple of days later J told me “I don’t want to be King Thistle. I want to be Holly”.

For as long as J and L have been playing “dress-up” J has enjoyed putting on pretty dresses. Sometimes he asks for lip-gloss too and announces to the mirror “I’m a very pretty girl!”: I have never questioned his choice or his right to do so, and haven’t given too much thought as to the reasons, as I couldn’t do more than guess even if I wanted to get to the bottom of it. Maybe he hears me telling L how pretty she looks in her princess costume and wants to receive the same compliment. Maybe the social difficulties caused by his autism mean he is less aware of gender-based notions of appropriate clothing. Maybe his sensory difficulties mean dresses are more physically comfortable for him than trousers. Maybe he is gay or transgender. Maybe he enjoys the joke of wearing the “wrong” clothes in the same way he often laughs when he says something of which he knows the opposite to be true.

The point is, it doesn’t matter. At home he is free to wear what makes him happy and be a beautiful fairy princess alongside his sister. He doesn’t always choose the dress when we’re putting costumes on – sometimes he is Iggle Piggle; sometimes he is the Grand Old Duke of York; sometimes he is a robot. But the choice is always his.

And so to my dilemma. Do I let J go to his own birthday party as Holly, wearing a pink sparkly dress and fairy wings? To be honest at first it didn’t even occur to me to tell him “no”. But then I got thinking. And now I’m confused. For every argument for letting him wear the dress, I can think of an equally valid counter-argument. Maybe a list of pros and cons might help …

Reasons to let J wear a pink dress to his party

  1. He should be able to express himself in whatever way makes him happy.
  2. It won’t hurt anyone, and if people don’t like it that’s their problem.
  3. L can choose whatever she wants to wear (I wouldn’t stop her being an elf) so why shouldn’t J?
  4. It will be hard to explain why he can’t be “Holly” whilst still making it clear that his general preferences are valid and acceptable.
  5. We should be setting an example to other children that they should be tolerant and accepting of difference.
  6. A parent should teach their child to stay true to themselves rather than conform to please the masses.

Reasons not to let J wear a pink dress to his party

  1. The other children might say hurtful things, either at the party or in the future.
  2. The other parents might judge us and talk negatively about J or me – to each other and to their children.
  3. J might be stigmatised for a long time as “the boy who wore a dress”.
  4. J already acts differently to his peers due to his autism – wearing a dress will only serve to accentuate his differences.
  5. There will be lots of other opportunities for J to dress up in pretty costumes without doing it in such a public way.
  6. It is normal practise to invite every child in the class therefore there will be a lot of children and parents at the party who I don’t know, and who don’t understand J.

All I can say is that I am pleased I don’t have to rush into a decision. I believe that I have a clear responsibility to teach J to be true to himself and not ever feel he has to conform to please others. I also believe I have a clear responsibility to help J understand socially acceptable behaviour and to protect him from a world that is not always accepting of difference. My problem is in deciding which responsibility takes precendence in this instance.

I can see that there is a third option here – a compromise costume. Maybe J could wear a pink top with trousers and fairy wings. And I’m not ruling that out … but for the purposes of this discussion that essentially equates to telling J he can’t wear a dress and be Holly at his party, as this is certainly how he will see it.

So to anyone who is reading this post – I would genuinely love to know your thoughts. I’m not considering “parenting by majority vote” but it would be great to know what you’d honestly think if you saw a little boy in a pink fairy dress. Tell me what you’d do in my shoes?!

Maybe asking for your opinions is highlighting for me the most difficult part of being a single parent. I had thought the most difficult part was not having someone else to take a turn when you’re called for the tenth time during the night. Or having to turn down fun social invitations because you can’t find a babysitter. Or caring for two children when you’re ill. But it turns out I was wrong: the toughest part of single parenting is having to take full responsibility for the most difficult decisions. Being solely accountable if the decision ends up being the wrong one.

I guess I need to accept that sometimes I’ll make the right decisions as a mother and sometimes I’ll make the wrong decisions. The important thing is that all my choices are made with the very best intentions … made because I adore my children and want nothing more than their lasting happiness. And more than anything else, whatever I decide about J’s party costume, I think all I can really hope is that he’ll look back one day and say “Mum [didn’t] let me wear a fairy dress to my party because she loves me”. Whether J’s preference for wearing pretty dresses lasts six months or sixty years, as long as he knows his Mum loves him completely, truly and unconditionally forever, I will be happy to accept I’ve done a good job.

“You’re Essentially One Of Those Whiny Mothers Who Has An Excuse For Everything …”

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

An open letter to Toys R Us

Dear Toys R Us,

My son J is coming up to four years old and has autism.  Here are some key facts about J that mean shopping trips can invariably become very stressful events:

1)      J often refuses to walk when we are in large shops.  This may be because he also suffers from hypermobility which in turn can cause painful joints and a strange gait.  However, it is more likely that it is because stores such as supermarkets and Toys R Us are a sensory nightmare for J and children like him.  J experiences hyper-sensitivity in a number of his senses including sight, sound and proprioception, and when he walked into your store this afternoon he went into sensory overload.  The bright-lights, garish-colours, shelves-packed-with-toys, children-crying, lights-buzzing, trollies-squeaking, tills-ringing sights and sounds meant that he simply could not put one foot in front of the other.  Adults with autism have described a feeling of “shutting down” when they go into sensory overload.  So J refused to walk once we were within 10 paces of the store’s entrance.

2)      J refuses to sit in the child seats in trollies and will only sit within the trolley itself.  I do not know why this is.  It may be because he once had a negative experience in a child seat and now will always associate these seats with this experience due to the difficulties with social imagination that partly define autism.  It may be because he feels more secure surrounded by the “walls” of the trolley, and has a sense of reassurance in an environment that otherwise feels so overwhelming for him.  Believe me, it is very unhelpful for me to have to allow him to sit in the trolley itself.  If you have ever tried to fit a week’s worth of groceries into a trolley that already has a child in it, you will know what I mean.

3)      J equally refuses to sit in a buggy.  Again I can only speculate as to the reason, but I suspect he sees a buggy as being for a baby.  His inability to think flexibly due to his autism means that as he is not a baby, a buggy cannot possibly be for him.

4)      J has a twin sister.  This means that whatever kind of behaviour J is displaying, I can never give him my undivided attention as I always have another young child to consider.

5)      As a single mother I cannot always carry out my shopping trips without my children.  Sometimes I simply have to take them with me.  And sometimes I choose to take them with me, since sheltering J from the real world will not be helpful when he is grown up and forced to deal with the real world alone.

I appreciate that some of these factors were not immediately visible this afternoon when, as we entered your store, one of your employees stopped me to tell me my child could not sit in the trolley itself due to “health and safety reasons”.  This is why I took the time to calmly explain J’s needs, and reassure the sales assistant that J would sit quietly in the trolley.  Explaining this calmly was more of a feat than it sounds, as by this point J was screeching loudly, clapping his hands over his ears, and shouting out the names of children’s television characters as this is one of his coping mechanisms when he needs something else to focus on.  When your employee replied that it was “company policy” and that I would have to put J in the child seat, I attempted to do so.  Your employee then witnessed my struggle as I tried to force my screaming child into a seat he did not want to sit in.  He witnessed J hitting and kicking me in an attempt to break free, then when I stood J on the floor instead, he witness J clawing at my clothes and begging “carry me, carry me”.

When I turned back to your assistant I asked him what he thought I should do.  I told him that I could not carry J.  He is far too heavy for me, and I needed to push the trolley in which his sister was sitting (within the designated seat, you will be delighted to note).  I could not abandon our shopping trip as we needed a birthday present for a party we were attending later the same day.  Of course at that moment, witnessing my distress and having heard my explanation for J’s behaviour, there are a number of responses the sales assistant could have given.  Perhaps he would permit me to pass him and continue shopping provided I guaranteed to keep J seated in the back the trolley and not allow him to stand.  Perhaps he would even ask me to sign a disclaimer.  Maybe he would offer to accompany me around the store to assist a family clearly in some difficulty.  Or perhaps he would keep blandly stating “Sorry, it’s company policy.  Health and Safety”.  I think you can probably guess which option he went for.

So, pushing my daughter in the trolley with one hand, and half-carrying, half-dragging J with the other hand, I proceeded into the store.  J’s crying by this point had reached a ferocious volume, and I was continuing to be hit and kicked for the duration.  Other customers stared openly at my “naughty” son, tutting their disapproval at his behaviour and, no doubt, at my parenting.  Once we were out of your employee’s line of vision, I put J into the trolley, where he immediately calmed and sat quietly for the remainder of our visit.

I do understand the reasoning behind your “company policy” stating children may not sit in trollies except in the designated seats.  I realise that the purpose of this policy is to pre-empt an accident following which your company could be sued for large sums of money and receive any amount of bad press.  Of course I could suggest that Toys R Us are more concerned with protecting yourselves than with the wellbeing of your young customers, but I won’t.  I could launch into a bitter tirade about this being an example of “health and safety gone mad” (which it is) but I won’t.

However, I can’t help but wonder whose health and safety was being protected this afternoon when we were essentially refused entry to the store until I took J out of the trolley.  Certainly not J’s.  The absolute safest place he could have been was inside the trolley, which would have avoided a sensory meltdown that could have potentially caused him to bump into displays or fall to the ground.  Certainly not mine, as I am currently undergoing physiotherapy for a back injury aggravated by J’s insistence to be carried when we are out.  The spattering of bruises covering my legs and chest are evidence of the kicking and punching I had to endure.  And I can only assume a Health and Safety policy would need to protect mental health and wellbeing too.  I don’t think it is necessary for me to point out the difference in stress levels for both J and myself when comparing a shopping trip when he sits in a trolley to a visit when he cannot.  Was your policy protecting the Health and Safety of your employees then, or of your other customers?  Again, I don’t think so.  A child who is so distressed and overwhelmed that his behaviour is temporarily out of control clearly poses a greater risk to others than one sitting in the confines of a trolley.

I would therefore like to respectfully suggest that as well as making sure Toys R Us’ 70,000+ employees have a rigorous understanding of Health and Safety policies in order to protect yourselves from potential law suits, they also receive training in qualities such as “flexibility” and “compassion”.  I also suggest that your employees undergo autism awareness training.  Around one in one hundred children have an Autism Spectrum Disorder (ASD).  This means your employees come into contact with significant numbers of autistic children each and every day.  A little understanding of what a trip to your store is like for a child with ASD (and their parents) would go a long, long way.  Circulating a copy of this letter around your 1500 stores would be an excellent start, as it will give your staff an insight into the experiences of one little boy and his mother.

Yours sincerely,

Ms L